I usually post about heavier things, so I thought I would share a post about how our family does, at times, actually have some fun;)
This has been a very busy work week for me - working every day when I normally have Thursday and Friday off (although my husband often reminds me that I do go in for an hour or 2 on those days and rarely do I actually have them off). This week was a lot more than that and we (especially my husband) needed some down time.
Today I got to present a 2 hour training on Trust Based Relational Intervention (TBRI). I love "teaching" and I am so passionate about that material (just as passionate as I am about EMDR!). I was so excited that they asked me to come and talk about it:)
While I was doing that my husband took Superman, Faith, and JJ fishing in the town where I was presenting. I reminded my husband it was not a "hard-core" fishing day...just enough for the kids to make some memories. My husband's idea of fishing is waking up when it is still pitch black and leaving for the water (which is harder to find in this state than in MN where we grew up;) and not returning until dark lol! Today was low key:)
Anyway, they picked me up when I was done and we went to Applebees for lunch. We used a gift card that I had gotten for a presentation I done on the same material a year ago (we clearly do not go out to eat very often lol!). It was a good meal. Some highlights of the meal included JJ asking for both grilled chicken and a corn dog. While he was considering those he saw a picture of a steak. So...he got the kids' steak. He ended up eating 1/2 of that and most of Faith's shrimp. Then he thought the lemons on my plate were oranges...his face was hilarious when he figured out that was not the case lol! He then insisted that we buy him shrimp and oranges to take home for him to eat. Superman really likes to eat burgers so we got him a quesadilla burger. He was shocked at the size of it and said it was the first time he has eaten out at a restaurant and actually got completely full:) Faith loved the mozzarella sticks (a girl after my own heart) and her chicken and shrimp meal. Jonathan loudly announcing his need to...use the restroom...left us all laughing as well.
Grace was not with us because...she is in the Team Mates program and got to attend the Spring Game today! She was so excited to go and had a great time. We are so thankful for that program for her to get the extra connection time with her Teammate who is, by the way, the most perfect fit for Grace:) Grace is now insisting that the rest of us need to actually attend a game too (although my husband and Buddy have attended a Spring Game too) so I suppose we will actually have to experience a game at some point (after living in this state for 18 years now;).
We came home and the kids spent the afternoon and evening playing outside. JJ INSISTED that I jump on the trampoline with him. He seems to think I am some 20-something mother. I was sitting on the trampoline catching my breath from laughing so hard at his silliness (ok...and from jumping so long) when he looked down on my head seeing my "roots" growing out and said, "Mom, why is your hair turning white?" I answered, "because I am getting old." He was so sweet when he replied, "Mom! You are not old!" So we jumped, I played catch with the 3 of them while Grace enjoyed her calming lavender bath, and JJ had a ton of fun running through the neighbor's sprinkler while fully clothed;)
Beautiful and her husband were heading back to our place tonight but she REALLY wanted to see the Jungle Book movie so asked if we would come too. Buddy was at work all day and I thought it was too much for the kids...so my husband drove down to eat supper and see the movie with them. It is just so incredibly sweet to me that my husband does those fun things with her (and that SHE wants us to be such a constant part of their life even post-marriage), and the other kids. So many dads do not. I am infinitely thankful for my husband - and God's wisdom when He put us together. Looking back 24 years ago we were a terrible match - but God has worked in both of us and made us compliment each other well. He knew what He was doing;)
So, just a fun post about a fun day to let you know (and remind me) that we are able to have fun times as a family and it isn't ALL drama (just 80% of it;).
Saturday, April 16, 2016
Wednesday, April 6, 2016
JJ's Scope Procedure
Thank you all for praying for today! It went well:)
We got up up 4:15 a.m. to be on the road by 5. I accidentally knocked the diffuser over where JJ was sleeping and got him wet...which woke him up (he has seasonal allergies so he has been having a bad runny nose and we were using EO's to help him). Instead of falling back asleep like he normally would, he knew what we were going to do today and got up. At 4:30 in the morning. There is a first for everything! Then he begged for food! JJ! Before 2 p.m.! I laughed hysterically for a few minutes while my husband was trying to figure out if I had lost my mind (which I probably have) then we just moved forward.
The whole trip to the hospital from 5 - 6:30 JJ stayed wide awake but was very quiet other than commenting about the stars:)
We got there 15 minutes early and registered. The next person who was supposed to be there already for the 7:30 procedure did not show up on time so they just prepped JJ and got him done at 7:30. I held up ok. JJ was clearly very nervous and retreating inside himself. When the charge nurse (who was AMAZING) asked him for his name before she could administer the liquid valium he couldn't even say his name - I am not sure he even remembered his last name at that point. The staff were all wonderful but we had 45 minutes less than we thought for prep so it all moved pretty quick (praise the Lord!). The anesthesiologist, GI specialist, Nurse Practitioner, nurses, and Life Specialist (there to help JJ feel calm, and prepare him with pictures of what was going to happen) were all very kind, low key, thoughtful, and anticipated our anxiety and tried to help us with that.
They took JJ at 7:30 and he did not get outwardly upset at all. The nurse got us some drinks and a muffin and then the GI specialist was right back. It was 8 and the fastest 30 minutes of my life. I know that was because of your prayers! Thank you for praying and for those of you who texted this morning to show us you were thinking of us. It meant A LOT!
The GI specialist gave us some of the pictures of JJ's insides and it was all structurally normal and there was no visible evidence of long term damage from his frequent vomiting. Yea!! He will call in a week with the results of the biopsies (like if he has Celiacs, infections, long-term damage, etc). If the biopsies come back clear, and the neurologist says it is not related to any neurological problem, and the feeding specialists say it is not motor related...then we are looking at this being a behavioral issue like anxiety. I know the depth of JJ's anxiety with all of the separation issues but if his anxiety makes his vomit every time he eats? When I was a teenager I spent several years vomiting 3 - 5 times a day entirely due to being in specific situations that made me extremely anxious (pretty much being rejected by people I wanted to like me). It would slay me to think that JJ feels that much anxiety - those were horrible years for me. But...I am counting chickens before they are hatched...we will get the results from the next diagnostic phases first before we check out that "basket."
Anyway, then a younger child was brought to the room next door and was clearly unhappy and inconsolable. As JJ was still in recovery I just paced and paced the floor thinking he may be that unhappy back in recovery and I wasn't there for him. But, the anesthesiologist stepped in and said he was fine. Would he tell me if he wasn't? probably not lol! But I was able to sit for awhile then. That was the longest 30 minutes of my life (aside from being in labor;)
They brought him back and he was still sleeping. He opened his unfocused eyes a bit to crawl into the regular bed and snuggle with me. They did all of the vitals, etc. They wanted him to wake to drink but we told them that getting him to eat/drink in the morning on a good day was sketchy so they let us go after about an hour. He woke long enough while we were taking out the IV and dressing him to tell us he wanted pizza and wanted the wheelchair to take him to the car rather than me carry him. Then he promptly fell asleep in the car again. We are home, we ordered pizza and it is waiting for him, but he is still sleeping and likely will sleep a long time yet I am sure (and I am going to go nap right with him:)
Thanks so much for your support and your prayers:) We are at the beginning of this diagnostic process and really appreciate your prayers for peace and for answers:)
We got up up 4:15 a.m. to be on the road by 5. I accidentally knocked the diffuser over where JJ was sleeping and got him wet...which woke him up (he has seasonal allergies so he has been having a bad runny nose and we were using EO's to help him). Instead of falling back asleep like he normally would, he knew what we were going to do today and got up. At 4:30 in the morning. There is a first for everything! Then he begged for food! JJ! Before 2 p.m.! I laughed hysterically for a few minutes while my husband was trying to figure out if I had lost my mind (which I probably have) then we just moved forward.
The whole trip to the hospital from 5 - 6:30 JJ stayed wide awake but was very quiet other than commenting about the stars:)
We got there 15 minutes early and registered. The next person who was supposed to be there already for the 7:30 procedure did not show up on time so they just prepped JJ and got him done at 7:30. I held up ok. JJ was clearly very nervous and retreating inside himself. When the charge nurse (who was AMAZING) asked him for his name before she could administer the liquid valium he couldn't even say his name - I am not sure he even remembered his last name at that point. The staff were all wonderful but we had 45 minutes less than we thought for prep so it all moved pretty quick (praise the Lord!). The anesthesiologist, GI specialist, Nurse Practitioner, nurses, and Life Specialist (there to help JJ feel calm, and prepare him with pictures of what was going to happen) were all very kind, low key, thoughtful, and anticipated our anxiety and tried to help us with that.
They took JJ at 7:30 and he did not get outwardly upset at all. The nurse got us some drinks and a muffin and then the GI specialist was right back. It was 8 and the fastest 30 minutes of my life. I know that was because of your prayers! Thank you for praying and for those of you who texted this morning to show us you were thinking of us. It meant A LOT!
The GI specialist gave us some of the pictures of JJ's insides and it was all structurally normal and there was no visible evidence of long term damage from his frequent vomiting. Yea!! He will call in a week with the results of the biopsies (like if he has Celiacs, infections, long-term damage, etc). If the biopsies come back clear, and the neurologist says it is not related to any neurological problem, and the feeding specialists say it is not motor related...then we are looking at this being a behavioral issue like anxiety. I know the depth of JJ's anxiety with all of the separation issues but if his anxiety makes his vomit every time he eats? When I was a teenager I spent several years vomiting 3 - 5 times a day entirely due to being in specific situations that made me extremely anxious (pretty much being rejected by people I wanted to like me). It would slay me to think that JJ feels that much anxiety - those were horrible years for me. But...I am counting chickens before they are hatched...we will get the results from the next diagnostic phases first before we check out that "basket."
Anyway, then a younger child was brought to the room next door and was clearly unhappy and inconsolable. As JJ was still in recovery I just paced and paced the floor thinking he may be that unhappy back in recovery and I wasn't there for him. But, the anesthesiologist stepped in and said he was fine. Would he tell me if he wasn't? probably not lol! But I was able to sit for awhile then. That was the longest 30 minutes of my life (aside from being in labor;)
They brought him back and he was still sleeping. He opened his unfocused eyes a bit to crawl into the regular bed and snuggle with me. They did all of the vitals, etc. They wanted him to wake to drink but we told them that getting him to eat/drink in the morning on a good day was sketchy so they let us go after about an hour. He woke long enough while we were taking out the IV and dressing him to tell us he wanted pizza and wanted the wheelchair to take him to the car rather than me carry him. Then he promptly fell asleep in the car again. We are home, we ordered pizza and it is waiting for him, but he is still sleeping and likely will sleep a long time yet I am sure (and I am going to go nap right with him:)
Thanks so much for your support and your prayers:) We are at the beginning of this diagnostic process and really appreciate your prayers for peace and for answers:)
Thursday, March 17, 2016
JJ's Pediatric GI Appointment
Today we had an appointment with a Pediatric GI specialist. JJ has struggled with reflux since birth off and on, but it has been worsening the past 18 months (since he is actually eating regularly!) We decided to take him in to a specialist and see what may be causing it and try to fix it. We are wondering if it is related to the apraxia. We are also wondering how much damage is being caused and how to fix the damage or stop damage from starting.
I had prayed for specific things:
That the specialist would take the time to hear what the issues really are: The specialist was wonderful. He took a lot of time to listen to me, and ask questions that clearly showed he was trying to assimilate the information and work toward an accurate diagnosis and the best help for JJ.
That he would make an accurate diagnosis: There is no doubt that JJ has reflux. The problem is what is causing it. So...we have to go back in 3 weeks and have an upper and lower scope done where pictures will be taken of JJ from his mouth on through - along with biopsies taken to see how much damage has been caused already from the reflux, if there is a structural problem, and if there is an infection/disease/inflammation problem. So many "possible causes" were thrown out that have me terrified that I am not letting myself even go there yet. I am trying to just think about it as a "rule out" procedure.
That he would suggest a plan relevant for Jonathan (not just a cookie cutter approach): The specialist sees 3 areas that need to be assessed/evaluated before a final diagnosis(or more) can be made.
1. The problems are related to the reflux (his specialty),
2. The apraxia (so we have to go see a pediatric neurologist in May for a more formal and comprehensive evaluation and diagnosis from him of the apraxia and what all of the "systems" are that are affected by the apraxia (as it is not just his speech), and
3. a formal "feeding study" where an OT, PT, and SLP watch him eat and see what the feeding issues are.
The specialist was concerned that I still have to feed JJ 90% of the time as he won't feed himself otherwise and then won't gain weight. We finally have JJ gaining weight but he is not eating "like a 5 year old should" both with quantity and feeding himself and not eating until the afternoons. He just opened up so many "possibilities" of what is wrong that I have not considered that my head is spinning. So...all of that is very overwhelming but I completely agree with the reasons he thinks all three areas need to be assessed.
That whatever the problem is it can be fixed and without pain for JJ: Today JJ had nothing invasive done and he was very happy. He knows that he has to have a scope next time though. They will let me hold him next time while the meds take effect to put him under for procedure. Then they will take him and I will see him again after he is woke up. I am already a wreck just considering it. Blech!
That JJ would be willing to answer any necessary questions, would not be scared, doesn't have any permanent damage already, and would be cooperative: JJ did great in the appointment and was very brave. After we got out he kept saying "I was so brave!" (although it took me awhile to figure out he was saying "brave" lol!) Of course, we won't know about any current damage until after the scope is done.
So, God did answer our prayers today. Thank you for those of you who have prayed:)
It was a very hard appointment for me and I could barely keep it together emotionally afterwards. I keep thinking that we should have done this a long time ago. It is just too much information for me to assimilate about processes that I just do not understand. I am overwhelmed with feeling out of control. I have fear that they will find something bigger is wrong or that what we have been doing has been wrong. I am beating myself up that I have attempted to "normalize" his issues rather than aggressively seek consultation before now. The specialist was very kind, but it was clear that JJ is not developmentally on track on so many levels and he thinks we should have been in before now. I am emotionally overwhelmed but, like everything else that happens here, I will eventually just assimilate it as the "new normal." It is appointments like this that make me feel utterly inadequate to have all of these special needs that we deal with. The learning curve is so steep to understand the new issues that arise and it stretches me way beyond my comfort zone and makes me fear so many unknowns. Then I beat myself up because it could be so much worse and I need to just be happy it isn't life threatening.
I have been reading about Joshua and trying to just trust in what I know that God told Joshua specifically, but imagine that He has the same message to all who He calls to something that stretches them:
Dt 31:7b Be strong and courageous
Dt. 31:8 It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.
Josh 1:6a Be strong and courageous
Josh 1:7a Only be strong and courageous
Josh 1:9 Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.
On and on we are told it as a command. He answered our prayers today. He has the final outcome in hand as well but I have a feeling He my sanctification is in the process and not the outcome (I hate it when that happens!!). I just need a little time to regain my footing and new normal. JJ is still our sweet JJ no matter what these diagnoses are, no matter what the interventions are, no matter if he is developmentally on track or not. God has the control, I do not, and today God is probably sitting back laughing at me saying, "one day you will finally consistently get it that you are not the one in control woman! Trust me!"
I had prayed for specific things:
That the specialist would take the time to hear what the issues really are: The specialist was wonderful. He took a lot of time to listen to me, and ask questions that clearly showed he was trying to assimilate the information and work toward an accurate diagnosis and the best help for JJ.
That he would make an accurate diagnosis: There is no doubt that JJ has reflux. The problem is what is causing it. So...we have to go back in 3 weeks and have an upper and lower scope done where pictures will be taken of JJ from his mouth on through - along with biopsies taken to see how much damage has been caused already from the reflux, if there is a structural problem, and if there is an infection/disease/inflammation problem. So many "possible causes" were thrown out that have me terrified that I am not letting myself even go there yet. I am trying to just think about it as a "rule out" procedure.
That he would suggest a plan relevant for Jonathan (not just a cookie cutter approach): The specialist sees 3 areas that need to be assessed/evaluated before a final diagnosis(or more) can be made.
1. The problems are related to the reflux (his specialty),
2. The apraxia (so we have to go see a pediatric neurologist in May for a more formal and comprehensive evaluation and diagnosis from him of the apraxia and what all of the "systems" are that are affected by the apraxia (as it is not just his speech), and
3. a formal "feeding study" where an OT, PT, and SLP watch him eat and see what the feeding issues are.
The specialist was concerned that I still have to feed JJ 90% of the time as he won't feed himself otherwise and then won't gain weight. We finally have JJ gaining weight but he is not eating "like a 5 year old should" both with quantity and feeding himself and not eating until the afternoons. He just opened up so many "possibilities" of what is wrong that I have not considered that my head is spinning. So...all of that is very overwhelming but I completely agree with the reasons he thinks all three areas need to be assessed.
That whatever the problem is it can be fixed and without pain for JJ: Today JJ had nothing invasive done and he was very happy. He knows that he has to have a scope next time though. They will let me hold him next time while the meds take effect to put him under for procedure. Then they will take him and I will see him again after he is woke up. I am already a wreck just considering it. Blech!
That JJ would be willing to answer any necessary questions, would not be scared, doesn't have any permanent damage already, and would be cooperative: JJ did great in the appointment and was very brave. After we got out he kept saying "I was so brave!" (although it took me awhile to figure out he was saying "brave" lol!) Of course, we won't know about any current damage until after the scope is done.
So, God did answer our prayers today. Thank you for those of you who have prayed:)
It was a very hard appointment for me and I could barely keep it together emotionally afterwards. I keep thinking that we should have done this a long time ago. It is just too much information for me to assimilate about processes that I just do not understand. I am overwhelmed with feeling out of control. I have fear that they will find something bigger is wrong or that what we have been doing has been wrong. I am beating myself up that I have attempted to "normalize" his issues rather than aggressively seek consultation before now. The specialist was very kind, but it was clear that JJ is not developmentally on track on so many levels and he thinks we should have been in before now. I am emotionally overwhelmed but, like everything else that happens here, I will eventually just assimilate it as the "new normal." It is appointments like this that make me feel utterly inadequate to have all of these special needs that we deal with. The learning curve is so steep to understand the new issues that arise and it stretches me way beyond my comfort zone and makes me fear so many unknowns. Then I beat myself up because it could be so much worse and I need to just be happy it isn't life threatening.
I have been reading about Joshua and trying to just trust in what I know that God told Joshua specifically, but imagine that He has the same message to all who He calls to something that stretches them:
Dt 31:7b Be strong and courageous
Dt. 31:8 It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.
Josh 1:6a Be strong and courageous
Josh 1:7a Only be strong and courageous
Josh 1:9 Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.
On and on we are told it as a command. He answered our prayers today. He has the final outcome in hand as well but I have a feeling He my sanctification is in the process and not the outcome (I hate it when that happens!!). I just need a little time to regain my footing and new normal. JJ is still our sweet JJ no matter what these diagnoses are, no matter what the interventions are, no matter if he is developmentally on track or not. God has the control, I do not, and today God is probably sitting back laughing at me saying, "one day you will finally consistently get it that you are not the one in control woman! Trust me!"
Saturday, February 13, 2016
An Interesting Conversation with Grace
Two weeks ago I posted about how things have been getting difficult with Grace again. We have had ups and downs the past two weeks. Thursday we had her parent/teacher conference and once again I was amazed that they have zero behavior problems with her at school. In fact, they have to encourage her to answer questions in class. That is so different from at home where she is always interrupting and argues with us about EVERYTHING insisting that her answer is the correct one. I have flashes of the future when she is arguing. I can see her standing toe to toe with God: "No, Sir, I did not trip my brother. He ran into me. It was all his fault."
Thursday night she had one of her terrible tantrums. I hate those tantrums. It was bigger than usual.
Anyway, yesterday she had off from school which always fills me with trepidation (especially after Thursday night's behavior). I had decided that the day would be spent actually getting some cleaning done. It was the Perfect Storm for me. I had the uninterrupted time, the energy, the motivation, and kids who were not at each other's throats distracting me from my purposes of cleaning. When that kind of day hits I have to take advantage of it. Faith was, as usual, helpful and asking me how she can help. She often gets the short end of the stick doing more chores than anyone else. She is compliant. Superman takes FOREVER to get his school done - often still working at 7 or 8 at night. Grace flat out refuses to work and it is easier to avoid the temper tantrum. So, I had Faith working on chores while I asked Grace to deep clean her room.
And she did it. Without arguing! I felt like I had won the lottery!
Then we moved all of the furniture in Faith's room. I had Buddy help me do it and he asked me why we were moving furniture. After we moved all of the dressers and bed he understood - she had enough tissues (she suffers from bad allergies) and tiny pieces of ripped up paper to fill to overflowing a wal mart bag lol! We got it all cleaned it up and it was great.
I made home made pizza and popcorn and we watched a movie last night to relax and reward the girls for working so hard (Superman did school until 8:30 and never did get done).
Today the kids played nice (for the most part) for awhile while I wrote a blog post. Then I played a bunch of card games with them. Grace and I made a diorama she had to do for school. She did pretty well today and I have to say it was very nice. So, essentially 2 tolerable days without any major incidents. At supper she was getting verbally out of control and I told her that if she feels like that she needs to remove herself until she can calm down...and she did!
At bedtime, which went better than usual with only minor issues, she stopped me after we prayed and I tucked her in. She apologized for her behavior on Thursday night and admitted that it was horrible. She said, with some insight that we rarely see, that sometimes she lashes out at us the worst when she is actually mad at herself. She said some other things along that line that impressed me in that she was actually thinking through her choices and taking responsibility. A hallmark of Grace's behavior is that she blames every wrong in the world on someone else and WILL NOT stop and see her role in it. Before I left she did try to tell me that my husband takes away her Kindle for 2 days when she has a big tantrum and she thinks she should only lose it for 1 day so "will you please talk to Dad about that for me?" Of course I told her that her major tantrums deserve the loss of Kindle for 2 days and if she doesn't want to lose it she shouldn't have the tantrum. She is completely able to control her behavior at school so I know she is capable - it is a choice. Anyway, aside from that piece that felt a bit manipulative, I was impressed with her insight. We shall see what comes from it:)
Thanks for your continued prayers for her and for our family. God is working. We will persevere. And He will be glorified:)
Thursday night she had one of her terrible tantrums. I hate those tantrums. It was bigger than usual.
Anyway, yesterday she had off from school which always fills me with trepidation (especially after Thursday night's behavior). I had decided that the day would be spent actually getting some cleaning done. It was the Perfect Storm for me. I had the uninterrupted time, the energy, the motivation, and kids who were not at each other's throats distracting me from my purposes of cleaning. When that kind of day hits I have to take advantage of it. Faith was, as usual, helpful and asking me how she can help. She often gets the short end of the stick doing more chores than anyone else. She is compliant. Superman takes FOREVER to get his school done - often still working at 7 or 8 at night. Grace flat out refuses to work and it is easier to avoid the temper tantrum. So, I had Faith working on chores while I asked Grace to deep clean her room.
And she did it. Without arguing! I felt like I had won the lottery!
Then we moved all of the furniture in Faith's room. I had Buddy help me do it and he asked me why we were moving furniture. After we moved all of the dressers and bed he understood - she had enough tissues (she suffers from bad allergies) and tiny pieces of ripped up paper to fill to overflowing a wal mart bag lol! We got it all cleaned it up and it was great.
I made home made pizza and popcorn and we watched a movie last night to relax and reward the girls for working so hard (Superman did school until 8:30 and never did get done).
Today the kids played nice (for the most part) for awhile while I wrote a blog post. Then I played a bunch of card games with them. Grace and I made a diorama she had to do for school. She did pretty well today and I have to say it was very nice. So, essentially 2 tolerable days without any major incidents. At supper she was getting verbally out of control and I told her that if she feels like that she needs to remove herself until she can calm down...and she did!
At bedtime, which went better than usual with only minor issues, she stopped me after we prayed and I tucked her in. She apologized for her behavior on Thursday night and admitted that it was horrible. She said, with some insight that we rarely see, that sometimes she lashes out at us the worst when she is actually mad at herself. She said some other things along that line that impressed me in that she was actually thinking through her choices and taking responsibility. A hallmark of Grace's behavior is that she blames every wrong in the world on someone else and WILL NOT stop and see her role in it. Before I left she did try to tell me that my husband takes away her Kindle for 2 days when she has a big tantrum and she thinks she should only lose it for 1 day so "will you please talk to Dad about that for me?" Of course I told her that her major tantrums deserve the loss of Kindle for 2 days and if she doesn't want to lose it she shouldn't have the tantrum. She is completely able to control her behavior at school so I know she is capable - it is a choice. Anyway, aside from that piece that felt a bit manipulative, I was impressed with her insight. We shall see what comes from it:)
Thanks for your continued prayers for her and for our family. God is working. We will persevere. And He will be glorified:)
The Wedding (from 6 months ago;)
It has been over 6 months now since The Wedding. I can hardly believe it! I have thought many times about the post for the wedding but I haven't figure out exactly what to say, or had the time to ponder it. So, since it has been 6 months I thought I had better just get it done:) If you just want to see how beautiful the wedding was, our daughter was, and how precious it all was, just clink on the link and watch the 9 minute beautifully edited version that captures all of the highlights. If you want to try to follow the bunny trails of a mamma's heart as she married of her beloved first-born...read on:)
https://www.youtube.com/watch?v=RKbX3I4ZJQ8
As those of you who follow our life know, much of 2015 had a lot of ups and downs. We started with the wedding planning in January (they got engaged 12/15/2014 on their 2 year anniversary of dating) with finding the perfect dress. It was a very emotional experience for me and I cried when she put on the one she ended up choosing. It was perfect for her - add the veil and I was lost.
One of the days we went to buy the flowers and other decorations I also realized that I had to put on a GRADUATION PARTY in less than a month! I had totally overlooked that in light of the upcoming wedding. I am so thankful for our amazing friend who planned the decorating and I was just along for the ride. We did manage to have a nice graduation party on May 2. That was also Buddy's birthday so we had graduation cake for her and birthday cake for him.
It was also nice that my husband's mother was able to be there. She lived in a nursing home 6 blocks away so my husband wheeled her in her wheelchair to the church for the party and she got to enjoy seeing everyone and being a part of it. That was very special to us as later in the month her health deteriorated to the point that she passed away on 7/15/2015. My mother and sister also came down for the graduation.
By the end of May my mother in law was in the hospital and we were pretty sure that she would not make it. We did as much planning for the wedding as we could while also dealing with her being so sick and making difficult decisions. Everything that we did at that time I was realizing that I was doing it for the last time with Beautiful. At times I could remain matter of fact. Other times it was too emotional for me so I just tried to keep it matter of fact. I am so thankful for the many, many people who helped with the wedding. I could have been overwhelmed with anxiety but I know that so many people were praying for us along with coming aside us to help.
A couple of those "last" moments with Beautiful were going out with her on my husband's and my 20th anniversary, and taking the whole family for our "birthday party" at The Pizza Machine (we do one joint big party celebration with essentially just family rather than have a bunch of separate parties. Since most of the kids are within 2 months of each other it just works better that way;)
We could not have pulled off the wedding without the help of so many people. It also would not have gone as smoothly without Beautiful being as flexible as she was. She is the Pinterest queen and looked up thousands of ideas and ran them past us and our friend who helped. Our friend also had ideas and they came up with what was such a beautiful wedding - simple and beautiful.
Women in our church and my son-in-law's church put on very precious and sweet wedding showers for her. It melted my heart to see these other woman loving on her and supporting her. It has been hard at times because some people have not agreed with our allowing Beautiful to marry at age 18. We know that more people "thought" it than actually confronted us. But we had peace that we made the right decision, and continue to have that peace. We did a lot of praying about it ahead of time, consulted with quite a few pastors, had many people praying, and finally decided that this was the right path for them. Besides that, only in our state do people have to wait for age 19 before they can marry without parental consent. Beautiful and our son-in-law were gracious enough to include us integrally in this important decision rather than just running off and eloping (not that they would have).
Actually, I will go on a bunny trail here...I really REALLY tried to get them to have a destination wedding. I REALLY tried. But, they wanted to marry in our church with their friends and family around them. So that is what we did...and boy were there friends and family around them!
So...lets get back to my biggest anxiety about the entire wedding...the guest list. We knew that very few of my husband's and my family would likely travel all the way here (we are the only ones from our family in this state). However, we have a lot of church family. Our home school family includes many from our son-in-laws home school family too since we are in the same "group" together. But his family and friends of family are extensive. By the time we narrowed down the list over 550 people were invited. We were pretty sure that the church would hold no more than 350 - and that was if they were squeezed in. We had over 300 people RSVP that they were coming. My husband had one family member come (his brother) and I had 8. We had to laugh that that was the same amount as our immediate family (now including our son in law) lol! After the wedding we figured out the total number of people who came was...350. Praise the Lord that He knew how many we could accommodate and had just the right number come! In fact, there were 12 people who RSVP'd to come but were not able to as they had to attend a funeral at the same time as the wedding - if they had come there were have been people standing. So, I was right to be anxious about the guest list and how we would accommodate everyone, and am so thankful that God took care of it:) Believe it or not, even with the huge guest list, there were people that were not on the list that we debated about. We did not want anyone to feel left out. However, we obviously could not have accommodate any more so it was all it is was supposed to be.
Planning for the reception was another ordeal. The church could not hold 350 for the reception so we rented the old high school gym in town. Not the most beautiful location but the women who helped decorate it made it a perfect location for us. We had decided that it would cost us too much to do a full meal for 350 people so we did a dessert reception (hey, that is simply the reality of it). We went back and forth for months on what exactly to serve but in the end I think it was fine. We decided that instead of a buffet line to pick up deserts that we would decorate each individual table using the food as part of the decoration. So we incorporated wood, candles, lights, platters, baby's breath and the nuts, cupcakes, and meat/cheese plates. When we came up with that plan I had neglected to think about the reality that I would have to buy several platters for every single table...but it all worked out beautifully. There were not many leftovers and our family had them (except the cupcakes) gone within a couple of days lol! I can't do justice to how beautiful the decorations that Beautiful and our friend came up with at the reception and the church so here are just a few pics:
I did not have many ideas for the wedding, but my contributions were, I think, kind of fun. I had suggested that since they had a camouflage and hunting theme for the wedding that we use a boat for the beverages. We filled the boat with water and soda so people could take what they wanted and it would expedite the beverage process. Trying to get 350 people through a line for coffee or punch seemed...daunting. Also, I had suggested that when they lit the unity candles that we had candles lit on the alter that symbolized each of our families - 8 coral candles for our family and 5 white candles for my son in law's family. His mother gave them the unity candle which was very special:) I also thought that the guest book would be more fun (and practical) if it was a photo album of their engagement pictures:) So, there you have it, my THREE idea contributions to the entire wedding lol! Believe me, it is a good thing that those are all I came up with...I am not gifted in decorating...or hostessing...or organizing a party...or anything at all that is associated with a wedding. Anyway, I have seen a picture of the whole wedding cake area but can't seem to find it. My friend did a FABULOUS job on it. I am bummed I cannot find that picture (or a picture of an entirely decorated table:(
Ok, now for the hardest part of the post (can you tell I put it off for last?) The Wedding.
I thought that I had planned for most aspects of the wedding preparation. However, I did not plan well for the morning of the wedding. My husband was busy doing last minute running around while trying to get items where they needed to be. That left me trying to get 4 children plus myself ready. See where this is going? I was not able to be there for Beautiful to get her dressed and made up. We had a personal attendant for her (who thought of a ton of things that I did not, she was invaluable!) and people to do hair and makeup. But I wasn't able to be that person. Then, I was not really part of the pictures of her. The pictures turned out beautifully but I will admit that even in that morning God was whispering to me that this was how it should be...the wedding was hers, they were her pictures, and it was her life that was separating from mine. No longer was she mine. Man, I am crying just thinking about it. I thought that waiting 6 months would help but I guess not. It is a difficult choice to hand your first-born over to her husband - no matter how worthy he is. It is especially hard when she is only 18, had just graduated, and is also heading off to college. All of those "degrees of separation" happened simultaneously.
I have to smile at how God knows the hurts of my heart though and meets me where I am at. Literally as I was typing those sentences Beautiful texted me "Missing you. How are you?" The last 6 months have shown me that she is as tightly woven into our family as ever. We text almost every day (usually several times) and we see each other often (in fact, this is the first weekend they aren't here since the beginning of November). I could go on and on about how I have tried to find the balance between being an involved mom who adores my daughter and son-in-law while fighting hard to know where the "line" is that should not be crossed between giving "advice" and "taking over." Maybe I will understand that dynamic before kid #6 marries off lol! But...that is not the point of this blog post so I won't bunny trail that far off:)
Back to the day of the wedding. In one word it was chaos. We had an overall plan and I believe, in hindsight, that the overall plan went over well. There were so many pieces that had to be adjusted and I think God brought us through those. Just some of those were: my mother in law dying 3 weeks before the wedding. She passed away on 7/15, the next day we drove to our daughter's college to get her partially moved and deal with some things at the college, the Middles went to camp the following Sunday - Friday. Wednesday of that week on 7/22 was my husband's and my 20th anniversary. Beautiful went with us to Omaha for a very fun night out to celebrate our last big outing with her as a single woman. The following Wednesday we had an emotional Memorial Service for my mother in law led by the pastor who did all of the pre-marital counseling for Beautiful and her husband. The next morning we moved more items in to our daughter's rental house then continued on to my husband's home town with his mother ashes so that the next morning he could lead a grave side service and bury her ashes. We drove home that day (Friday). Sunday the pastor who had been working with Beautiful and our son in law went to the hospital and had to have brain surgery a few days later (he almost died and we are VERY thankful for his life!) but that meant we had to find another pastor ASAP and our senior pastor was on the east coast on vacation. So...Praise the Lord there is another pastor in our church who had left his church about a year ago I think to come home and farm. He agreed to do the wedding, met with everyone, and did an amazing job with the ceremony. So, so, SO blessed by him! Oh, and somewhere in there the person who was supposed to do all of the hair had to back out as her boss would not let her out of work and we could not find any replacements so we had to find non-professionals to do hair. I did not like my hair for the wedding, but in the grand scheme of everything else that happened, my hair was incredibly minor lol!
The ceremony was so beautiful. It was God-Centered. It was real. It was emotional. All through the wedding preparations I just kept repeating 2 things to myself through all of my anxiety - "As long as God is honored and at the end of it they are married that is all that matters." I very much felt that God was honored in it, and clearly they are married:)
Some of the most memorable moments for me (and not in any particular order):
*All of the parents/grandparents/wedding party circled around our daughter and her almost-husband praying over them before the ceremony.
* we parents praying over them during the candle lighting song
*worshiping during the ceremony
*seeing our son in law adore and love our beloved daughter
*my father walking me down the isle just like 20 years ago:)
*watching my daughter and her husband walk through the haze of bubbles to the truck.
*watching them have their first dance.
*holding my husband's hand tightly while we watched our daughter make her vows to her husband.
*watching so many people come to watch our little girl get married! I was blessed beyond words at the sheer number of people who took the time to witness their special day!
*watching how many people helped us, took over when we gave just an idea, and totally served our family and guests with their talents and love for our family. (Including the people who helped with the clean up. I did not sufficiently plan for that aspect either - thinking my husband had taken care of it. It did all get done that night though so that is a major blessing:) It was deeply humbling as I am a "do it yourself" person and this wedding stretched me so far beyond any of my capabilities. It was awkward to let so many people help us knowing that I would never be able to thank them all sufficiently but it was also a good learning experience for me.
*being very VERY thankful that there were enough chairs at the church for everyone to sit in (after my initial shock of walking in at the beginning and seeing SO MANY PEOPLE!!!!), chairs/tables for everyone at the reception (I don't think there were many extra chairs there, I know there were no empty tables), and that there was enough food/beverages for everyone.
*walking into the reception area and seeing how incredibly beautifully everyone had setup the tables and the area.
There were also things that did not go as we had hoped/planned, but I refuse to dwell on them and hopefully those details will vacate my brain as if they never happened lol!
So...the days after the wedding...I don't mean to end this walk down memory lane with a downer but...it was tough on me! It was as if all of our prayer warriors had prayed us hard through the wedding and then the protection was lifted. I spent 3 days practically not sleeping and filled with overwhelming anxiety. I would fall asleep, dream I was back at the wedding and things were not going well, wake myself up and keep repeating (it is OVER it is OVER it is OVER). For some reason one of the major things that kept going through my head that I could not get rid of that is so utterly ridiculous that I don't know why that is what was stuck in my head was...I am embarrassed to actually say...was that I looked fat in my dress. I just shake my head it. I actually loved my dress. It thought it was a beautiful dress (I did not pick it out but had a blast with Beautiful and our friend dress shopping when they chose it for me lol!). I also worried that I did not thank someone, I was dismissive to someone, I didn't greet someone, etc. It was such a blur all day that I worried that I offended someone (many people) in some way, shape, or form. I was so sick over it all being over and imagining that something went wrong and that dress thought going through my head that I was anxious to the point of being very nauseated. It went away after 3 nights but it was intense. No logic to it, but I guess that is the hallmark of anxiety, right?
Anyway, Beautiful and her husband spent a fabulous week in Estes Park, CO and sent us lots of texts and funny videos of themselves hiking. Then they returned and the next Monday we had his family up for the day to open gifts. It was also JJ's 5th birthday AND our son in law's grandparents anniversary! so we had cake for that as well. I did not take any time off for the wedding and in hind sight I should have. Sigh... I just kept thinking about how much it cost to put it on and knew that I could not afford to take a week off lol!
So, that is a very loooong winded description of the thoughts of this mamma about her first-born daughter's wedding:) Real, raw, and honest:)
https://www.youtube.com/watch?v=RKbX3I4ZJQ8
As those of you who follow our life know, much of 2015 had a lot of ups and downs. We started with the wedding planning in January (they got engaged 12/15/2014 on their 2 year anniversary of dating) with finding the perfect dress. It was a very emotional experience for me and I cried when she put on the one she ended up choosing. It was perfect for her - add the veil and I was lost.
One of the days we went to buy the flowers and other decorations I also realized that I had to put on a GRADUATION PARTY in less than a month! I had totally overlooked that in light of the upcoming wedding. I am so thankful for our amazing friend who planned the decorating and I was just along for the ride. We did manage to have a nice graduation party on May 2. That was also Buddy's birthday so we had graduation cake for her and birthday cake for him.
It was also nice that my husband's mother was able to be there. She lived in a nursing home 6 blocks away so my husband wheeled her in her wheelchair to the church for the party and she got to enjoy seeing everyone and being a part of it. That was very special to us as later in the month her health deteriorated to the point that she passed away on 7/15/2015. My mother and sister also came down for the graduation.
By the end of May my mother in law was in the hospital and we were pretty sure that she would not make it. We did as much planning for the wedding as we could while also dealing with her being so sick and making difficult decisions. Everything that we did at that time I was realizing that I was doing it for the last time with Beautiful. At times I could remain matter of fact. Other times it was too emotional for me so I just tried to keep it matter of fact. I am so thankful for the many, many people who helped with the wedding. I could have been overwhelmed with anxiety but I know that so many people were praying for us along with coming aside us to help.
A couple of those "last" moments with Beautiful were going out with her on my husband's and my 20th anniversary, and taking the whole family for our "birthday party" at The Pizza Machine (we do one joint big party celebration with essentially just family rather than have a bunch of separate parties. Since most of the kids are within 2 months of each other it just works better that way;)
We could not have pulled off the wedding without the help of so many people. It also would not have gone as smoothly without Beautiful being as flexible as she was. She is the Pinterest queen and looked up thousands of ideas and ran them past us and our friend who helped. Our friend also had ideas and they came up with what was such a beautiful wedding - simple and beautiful.
Women in our church and my son-in-law's church put on very precious and sweet wedding showers for her. It melted my heart to see these other woman loving on her and supporting her. It has been hard at times because some people have not agreed with our allowing Beautiful to marry at age 18. We know that more people "thought" it than actually confronted us. But we had peace that we made the right decision, and continue to have that peace. We did a lot of praying about it ahead of time, consulted with quite a few pastors, had many people praying, and finally decided that this was the right path for them. Besides that, only in our state do people have to wait for age 19 before they can marry without parental consent. Beautiful and our son-in-law were gracious enough to include us integrally in this important decision rather than just running off and eloping (not that they would have).
Actually, I will go on a bunny trail here...I really REALLY tried to get them to have a destination wedding. I REALLY tried. But, they wanted to marry in our church with their friends and family around them. So that is what we did...and boy were there friends and family around them!
So...lets get back to my biggest anxiety about the entire wedding...the guest list. We knew that very few of my husband's and my family would likely travel all the way here (we are the only ones from our family in this state). However, we have a lot of church family. Our home school family includes many from our son-in-laws home school family too since we are in the same "group" together. But his family and friends of family are extensive. By the time we narrowed down the list over 550 people were invited. We were pretty sure that the church would hold no more than 350 - and that was if they were squeezed in. We had over 300 people RSVP that they were coming. My husband had one family member come (his brother) and I had 8. We had to laugh that that was the same amount as our immediate family (now including our son in law) lol! After the wedding we figured out the total number of people who came was...350. Praise the Lord that He knew how many we could accommodate and had just the right number come! In fact, there were 12 people who RSVP'd to come but were not able to as they had to attend a funeral at the same time as the wedding - if they had come there were have been people standing. So, I was right to be anxious about the guest list and how we would accommodate everyone, and am so thankful that God took care of it:) Believe it or not, even with the huge guest list, there were people that were not on the list that we debated about. We did not want anyone to feel left out. However, we obviously could not have accommodate any more so it was all it is was supposed to be.
Planning for the reception was another ordeal. The church could not hold 350 for the reception so we rented the old high school gym in town. Not the most beautiful location but the women who helped decorate it made it a perfect location for us. We had decided that it would cost us too much to do a full meal for 350 people so we did a dessert reception (hey, that is simply the reality of it). We went back and forth for months on what exactly to serve but in the end I think it was fine. We decided that instead of a buffet line to pick up deserts that we would decorate each individual table using the food as part of the decoration. So we incorporated wood, candles, lights, platters, baby's breath and the nuts, cupcakes, and meat/cheese plates. When we came up with that plan I had neglected to think about the reality that I would have to buy several platters for every single table...but it all worked out beautifully. There were not many leftovers and our family had them (except the cupcakes) gone within a couple of days lol! I can't do justice to how beautiful the decorations that Beautiful and our friend came up with at the reception and the church so here are just a few pics:
I did not have many ideas for the wedding, but my contributions were, I think, kind of fun. I had suggested that since they had a camouflage and hunting theme for the wedding that we use a boat for the beverages. We filled the boat with water and soda so people could take what they wanted and it would expedite the beverage process. Trying to get 350 people through a line for coffee or punch seemed...daunting. Also, I had suggested that when they lit the unity candles that we had candles lit on the alter that symbolized each of our families - 8 coral candles for our family and 5 white candles for my son in law's family. His mother gave them the unity candle which was very special:) I also thought that the guest book would be more fun (and practical) if it was a photo album of their engagement pictures:) So, there you have it, my THREE idea contributions to the entire wedding lol! Believe me, it is a good thing that those are all I came up with...I am not gifted in decorating...or hostessing...or organizing a party...or anything at all that is associated with a wedding. Anyway, I have seen a picture of the whole wedding cake area but can't seem to find it. My friend did a FABULOUS job on it. I am bummed I cannot find that picture (or a picture of an entirely decorated table:(
Ok, now for the hardest part of the post (can you tell I put it off for last?) The Wedding.
I thought that I had planned for most aspects of the wedding preparation. However, I did not plan well for the morning of the wedding. My husband was busy doing last minute running around while trying to get items where they needed to be. That left me trying to get 4 children plus myself ready. See where this is going? I was not able to be there for Beautiful to get her dressed and made up. We had a personal attendant for her (who thought of a ton of things that I did not, she was invaluable!) and people to do hair and makeup. But I wasn't able to be that person. Then, I was not really part of the pictures of her. The pictures turned out beautifully but I will admit that even in that morning God was whispering to me that this was how it should be...the wedding was hers, they were her pictures, and it was her life that was separating from mine. No longer was she mine. Man, I am crying just thinking about it. I thought that waiting 6 months would help but I guess not. It is a difficult choice to hand your first-born over to her husband - no matter how worthy he is. It is especially hard when she is only 18, had just graduated, and is also heading off to college. All of those "degrees of separation" happened simultaneously.
I have to smile at how God knows the hurts of my heart though and meets me where I am at. Literally as I was typing those sentences Beautiful texted me "Missing you. How are you?" The last 6 months have shown me that she is as tightly woven into our family as ever. We text almost every day (usually several times) and we see each other often (in fact, this is the first weekend they aren't here since the beginning of November). I could go on and on about how I have tried to find the balance between being an involved mom who adores my daughter and son-in-law while fighting hard to know where the "line" is that should not be crossed between giving "advice" and "taking over." Maybe I will understand that dynamic before kid #6 marries off lol! But...that is not the point of this blog post so I won't bunny trail that far off:)
Back to the day of the wedding. In one word it was chaos. We had an overall plan and I believe, in hindsight, that the overall plan went over well. There were so many pieces that had to be adjusted and I think God brought us through those. Just some of those were: my mother in law dying 3 weeks before the wedding. She passed away on 7/15, the next day we drove to our daughter's college to get her partially moved and deal with some things at the college, the Middles went to camp the following Sunday - Friday. Wednesday of that week on 7/22 was my husband's and my 20th anniversary. Beautiful went with us to Omaha for a very fun night out to celebrate our last big outing with her as a single woman. The following Wednesday we had an emotional Memorial Service for my mother in law led by the pastor who did all of the pre-marital counseling for Beautiful and her husband. The next morning we moved more items in to our daughter's rental house then continued on to my husband's home town with his mother ashes so that the next morning he could lead a grave side service and bury her ashes. We drove home that day (Friday). Sunday the pastor who had been working with Beautiful and our son in law went to the hospital and had to have brain surgery a few days later (he almost died and we are VERY thankful for his life!) but that meant we had to find another pastor ASAP and our senior pastor was on the east coast on vacation. So...Praise the Lord there is another pastor in our church who had left his church about a year ago I think to come home and farm. He agreed to do the wedding, met with everyone, and did an amazing job with the ceremony. So, so, SO blessed by him! Oh, and somewhere in there the person who was supposed to do all of the hair had to back out as her boss would not let her out of work and we could not find any replacements so we had to find non-professionals to do hair. I did not like my hair for the wedding, but in the grand scheme of everything else that happened, my hair was incredibly minor lol!
The ceremony was so beautiful. It was God-Centered. It was real. It was emotional. All through the wedding preparations I just kept repeating 2 things to myself through all of my anxiety - "As long as God is honored and at the end of it they are married that is all that matters." I very much felt that God was honored in it, and clearly they are married:)
Some of the most memorable moments for me (and not in any particular order):
*All of the parents/grandparents/wedding party circled around our daughter and her almost-husband praying over them before the ceremony.
* we parents praying over them during the candle lighting song
*worshiping during the ceremony
*seeing our son in law adore and love our beloved daughter
*my father walking me down the isle just like 20 years ago:)
*watching my daughter and her husband walk through the haze of bubbles to the truck.
*watching them have their first dance.
*holding my husband's hand tightly while we watched our daughter make her vows to her husband.
*watching so many people come to watch our little girl get married! I was blessed beyond words at the sheer number of people who took the time to witness their special day!
*watching how many people helped us, took over when we gave just an idea, and totally served our family and guests with their talents and love for our family. (Including the people who helped with the clean up. I did not sufficiently plan for that aspect either - thinking my husband had taken care of it. It did all get done that night though so that is a major blessing:) It was deeply humbling as I am a "do it yourself" person and this wedding stretched me so far beyond any of my capabilities. It was awkward to let so many people help us knowing that I would never be able to thank them all sufficiently but it was also a good learning experience for me.
*being very VERY thankful that there were enough chairs at the church for everyone to sit in (after my initial shock of walking in at the beginning and seeing SO MANY PEOPLE!!!!), chairs/tables for everyone at the reception (I don't think there were many extra chairs there, I know there were no empty tables), and that there was enough food/beverages for everyone.
*walking into the reception area and seeing how incredibly beautifully everyone had setup the tables and the area.
There were also things that did not go as we had hoped/planned, but I refuse to dwell on them and hopefully those details will vacate my brain as if they never happened lol!
So...the days after the wedding...I don't mean to end this walk down memory lane with a downer but...it was tough on me! It was as if all of our prayer warriors had prayed us hard through the wedding and then the protection was lifted. I spent 3 days practically not sleeping and filled with overwhelming anxiety. I would fall asleep, dream I was back at the wedding and things were not going well, wake myself up and keep repeating (it is OVER it is OVER it is OVER). For some reason one of the major things that kept going through my head that I could not get rid of that is so utterly ridiculous that I don't know why that is what was stuck in my head was...I am embarrassed to actually say...was that I looked fat in my dress. I just shake my head it. I actually loved my dress. It thought it was a beautiful dress (I did not pick it out but had a blast with Beautiful and our friend dress shopping when they chose it for me lol!). I also worried that I did not thank someone, I was dismissive to someone, I didn't greet someone, etc. It was such a blur all day that I worried that I offended someone (many people) in some way, shape, or form. I was so sick over it all being over and imagining that something went wrong and that dress thought going through my head that I was anxious to the point of being very nauseated. It went away after 3 nights but it was intense. No logic to it, but I guess that is the hallmark of anxiety, right?
Anyway, Beautiful and her husband spent a fabulous week in Estes Park, CO and sent us lots of texts and funny videos of themselves hiking. Then they returned and the next Monday we had his family up for the day to open gifts. It was also JJ's 5th birthday AND our son in law's grandparents anniversary! so we had cake for that as well. I did not take any time off for the wedding and in hind sight I should have. Sigh... I just kept thinking about how much it cost to put it on and knew that I could not afford to take a week off lol!
So, that is a very loooong winded description of the thoughts of this mamma about her first-born daughter's wedding:) Real, raw, and honest:)
Saturday, January 30, 2016
JJ Update: January 2016
I am going to attempt to do monthly updates again on JJ and his Apraxia progress, as well as just how he is doing. It will also help to remind me that he really is making progress:)
Sleep: Until the last 2 nights, this month JJ has slept in his own bed ALL NIGHT LONG!!!! It is the longest stretch that he has ever gone! That led to much better restful sleep for me when I didn't wake at 5 a.m. waiting for when he would come crawling into our bed. The last 2 mornings he did come crawling in at 5. However, he had to go potty both times (he is not yet nighttime trained) so if he is actually waking to potty I am good with that:)
Wednesday he had speech therapy. He had woke himself up for the day at 7 a.m. (tough on a kid who usually wakes between 9:30 and 11). He fell asleep in the car on the way there, slept while I carried him into my work, slept on the floor while I worked for an hour, slept while I took him back into the car, and finally woke up as I was taking him into his speech therapy. When he is out...he is OUT. He wasn't very on top of his game there as it takes him so long for his brain to "wake up." He takes about 2 naps a year so I guess he got this one out of the way early lol! Amazingly he was still asleep by his normal time of midnight that night - yay for me!
Speech: He is working well with his new speech language pathologist (SLP). She is pointing out more and more issues that confirm that we are dealing with Apraxia. For example, he cannot say FACE, then say SAFE. He cannot switch between the words. Everything comes out as FACE. I won't go into the long explanation of what is happening in his brain when that happens (nor do I completely understand it) but it is further confirmation that his motor cortex just needs to be making new connections. Every time his SLP points things out like that I am infinitely grateful that we got the second opinion and did not just trust what the school SLP had told us.
He also struggles with word order and usage. For so long I just wanted to understand the "message" he was trying to get across. Now that I am understanding him about 95% of the time (no one else understands him that much, just me) I am paying more close attention to his articulation and word order, etc. Sometimes I have to stop myself from doing that because it is overwhelming for me to think of everything he still has to overcome. I also have to stop and wonder if he is actually speaking clearer or if I am just learning how to "hear" him. So, I try to walk that fine line:)
Frustration Tolerance: This has been such a HUGE issue for him. However, it is much, much, MUCH less than it was. Last week I had to pick him up off the floor and carry him resisting me out of the church. However, by the time we got to the sidewalk outside he was calm enough to walk by himself home. He had wanted to stay and play and I said "no." His tantrums are much less frequent maybe 1 - 2 a week (or less) instead of 4 - 5 day:)
He also gets frustrated when I am correcting his speech (placing my finger on my lip with my bottom lip tucked into to model the /f/ placement). I would say that 90% of the time he will then correct himself rather than just say "NO! I don't have to do it!" Those percentages used to be opposite. It is the same with the /s/ placement. So, overall there is improvement:)
Eating: He is eating a lot more than he was. He is definitely growing:) However, he still won't feed himself. He is able to feed himself. And as independent as he insists on being it surprises me that he won't feed himself. But, as he is willing to actually eat the food I don't care how it gets to his mouth as long as he eats it! Last weekend Beautiful and her husband watched the kids while my husband and I got away for a night (I had an EMDR conference and my husband took the opportunity to take me out for an early birthday get away - I have a most excellent husband;). Beautiful fed JJ a bowl of Cheerios (we go through a LOT of Cheerios for JJ. He hates the honey nut ones) and he asked for more. She handed the bowl to her husband to feed JJ. Now, I adore my son in law and since he has had virtually no experience with kids except for our kids I am so thankful that he is as tolerant and wonderful with the kids that he is. Especially since JJ absolutely thinks he is the greatest thing since sliced bread. However, he is still learning about watching kids. Apparently he went and handed the bowl to JJ on the couch...and the couch got christened with milk:) Anyone in the world would assume that a 5 year old can hold a bowl of cereal and feed himself. But that just doesn't hold with JJ. Mostly, he cannot sit still long enough to eat the entire bowl so an adult holding it is just a good idea lol! My son in law felt so terrible about it. I told him that we knew better than to buy a "new" couch because we know our kids and knew this would happen. No big deal:)
School: with school he is doing very well with colors and patterns.So, I have moved into focusing on 1) letter/sound recognition, 2) fine motor skills of writing the letters, and 3) neural connections. His SLP thinks that if we can get him to see/read the words he is trying to say that he will get the differences between /s/ and /f/ better. So...I am trying:) He cracks me up though as a lot of time he gets wrapped up in "bathroom humor" with the words. I just try to roll with it...and roll my eyes;) To address #3 I pulled back out the Dianne Craft books I used with the other 5 kids and we are working on brain cross overs to build neural connections. I know it helped with some older kids. We shall see if it helps JJ:)
Humor/Inquisitive Mind: Last night he really got me. He was looking through Netflix for a movie to watch. He saw one about some dogs getting married or something and I told him that it looked like a ridiculous movie and dogs don't get married. He response, "if they can't get married how do they have babies?" My husband looked at my face, which showed my shock with my face red and my jaw dropped, and just laughed at me and left me to explain. I am a strong believer in just telling kids how it is and being real with them about many realities in life - including how babies are made...but I just don't want to explain to my 5 year old the mechanics of...procreation! It was hard enough when Faith was reading the Lot story last week and asked me how two males were able to "know each other" since we have already explained the mechanics of husbands and wives "knowing each other." Also, we obviously have had to have a lot of conversations with the older kids about the reality that while God says to wait for marriage to engage in the behavior which results in procreation, obviously people can choose to engage in that behavior and not be married (hence their conceptions). But...I have not yet discussed this with my precocious 5 year old. Sigh...So I thought I came up with a good answer when I said that God created animals differently from people. We are able to think and reason and are made in His image, and therefore God wants us to be married before we make babies so we have families to raise up the children. But, noooooo, he persistently asked, "but how do dogs make babies." At that point I totally gave up, changed the subject, and distracted him by suggesting another movie. That was the cowards way out but that is what I did! Every time these conversations come up I flashback to my step-mother having The Talk with my step-sister and I when I was younger than 10. I was horrified and mortified and very much do NOT want that to be my kids' experience (although, admittedly, it was definitely Superman's experience - poor kid!). One would think by the 6th kid I would not be so shell shocked every time the topic comes up lol!
OK, that is enough for now. What started as a post about Apraxia progress has ended on a discussion of Birds and Bees...can I bunny trail or what?!?!
Sleep: Until the last 2 nights, this month JJ has slept in his own bed ALL NIGHT LONG!!!! It is the longest stretch that he has ever gone! That led to much better restful sleep for me when I didn't wake at 5 a.m. waiting for when he would come crawling into our bed. The last 2 mornings he did come crawling in at 5. However, he had to go potty both times (he is not yet nighttime trained) so if he is actually waking to potty I am good with that:)
Wednesday he had speech therapy. He had woke himself up for the day at 7 a.m. (tough on a kid who usually wakes between 9:30 and 11). He fell asleep in the car on the way there, slept while I carried him into my work, slept on the floor while I worked for an hour, slept while I took him back into the car, and finally woke up as I was taking him into his speech therapy. When he is out...he is OUT. He wasn't very on top of his game there as it takes him so long for his brain to "wake up." He takes about 2 naps a year so I guess he got this one out of the way early lol! Amazingly he was still asleep by his normal time of midnight that night - yay for me!
Speech: He is working well with his new speech language pathologist (SLP). She is pointing out more and more issues that confirm that we are dealing with Apraxia. For example, he cannot say FACE, then say SAFE. He cannot switch between the words. Everything comes out as FACE. I won't go into the long explanation of what is happening in his brain when that happens (nor do I completely understand it) but it is further confirmation that his motor cortex just needs to be making new connections. Every time his SLP points things out like that I am infinitely grateful that we got the second opinion and did not just trust what the school SLP had told us.
He also struggles with word order and usage. For so long I just wanted to understand the "message" he was trying to get across. Now that I am understanding him about 95% of the time (no one else understands him that much, just me) I am paying more close attention to his articulation and word order, etc. Sometimes I have to stop myself from doing that because it is overwhelming for me to think of everything he still has to overcome. I also have to stop and wonder if he is actually speaking clearer or if I am just learning how to "hear" him. So, I try to walk that fine line:)
Frustration Tolerance: This has been such a HUGE issue for him. However, it is much, much, MUCH less than it was. Last week I had to pick him up off the floor and carry him resisting me out of the church. However, by the time we got to the sidewalk outside he was calm enough to walk by himself home. He had wanted to stay and play and I said "no." His tantrums are much less frequent maybe 1 - 2 a week (or less) instead of 4 - 5 day:)
He also gets frustrated when I am correcting his speech (placing my finger on my lip with my bottom lip tucked into to model the /f/ placement). I would say that 90% of the time he will then correct himself rather than just say "NO! I don't have to do it!" Those percentages used to be opposite. It is the same with the /s/ placement. So, overall there is improvement:)
Eating: He is eating a lot more than he was. He is definitely growing:) However, he still won't feed himself. He is able to feed himself. And as independent as he insists on being it surprises me that he won't feed himself. But, as he is willing to actually eat the food I don't care how it gets to his mouth as long as he eats it! Last weekend Beautiful and her husband watched the kids while my husband and I got away for a night (I had an EMDR conference and my husband took the opportunity to take me out for an early birthday get away - I have a most excellent husband;). Beautiful fed JJ a bowl of Cheerios (we go through a LOT of Cheerios for JJ. He hates the honey nut ones) and he asked for more. She handed the bowl to her husband to feed JJ. Now, I adore my son in law and since he has had virtually no experience with kids except for our kids I am so thankful that he is as tolerant and wonderful with the kids that he is. Especially since JJ absolutely thinks he is the greatest thing since sliced bread. However, he is still learning about watching kids. Apparently he went and handed the bowl to JJ on the couch...and the couch got christened with milk:) Anyone in the world would assume that a 5 year old can hold a bowl of cereal and feed himself. But that just doesn't hold with JJ. Mostly, he cannot sit still long enough to eat the entire bowl so an adult holding it is just a good idea lol! My son in law felt so terrible about it. I told him that we knew better than to buy a "new" couch because we know our kids and knew this would happen. No big deal:)
School: with school he is doing very well with colors and patterns.So, I have moved into focusing on 1) letter/sound recognition, 2) fine motor skills of writing the letters, and 3) neural connections. His SLP thinks that if we can get him to see/read the words he is trying to say that he will get the differences between /s/ and /f/ better. So...I am trying:) He cracks me up though as a lot of time he gets wrapped up in "bathroom humor" with the words. I just try to roll with it...and roll my eyes;) To address #3 I pulled back out the Dianne Craft books I used with the other 5 kids and we are working on brain cross overs to build neural connections. I know it helped with some older kids. We shall see if it helps JJ:)
Humor/Inquisitive Mind: Last night he really got me. He was looking through Netflix for a movie to watch. He saw one about some dogs getting married or something and I told him that it looked like a ridiculous movie and dogs don't get married. He response, "if they can't get married how do they have babies?" My husband looked at my face, which showed my shock with my face red and my jaw dropped, and just laughed at me and left me to explain. I am a strong believer in just telling kids how it is and being real with them about many realities in life - including how babies are made...but I just don't want to explain to my 5 year old the mechanics of...procreation! It was hard enough when Faith was reading the Lot story last week and asked me how two males were able to "know each other" since we have already explained the mechanics of husbands and wives "knowing each other." Also, we obviously have had to have a lot of conversations with the older kids about the reality that while God says to wait for marriage to engage in the behavior which results in procreation, obviously people can choose to engage in that behavior and not be married (hence their conceptions). But...I have not yet discussed this with my precocious 5 year old. Sigh...So I thought I came up with a good answer when I said that God created animals differently from people. We are able to think and reason and are made in His image, and therefore God wants us to be married before we make babies so we have families to raise up the children. But, noooooo, he persistently asked, "but how do dogs make babies." At that point I totally gave up, changed the subject, and distracted him by suggesting another movie. That was the cowards way out but that is what I did! Every time these conversations come up I flashback to my step-mother having The Talk with my step-sister and I when I was younger than 10. I was horrified and mortified and very much do NOT want that to be my kids' experience (although, admittedly, it was definitely Superman's experience - poor kid!). One would think by the 6th kid I would not be so shell shocked every time the topic comes up lol!
OK, that is enough for now. What started as a post about Apraxia progress has ended on a discussion of Birds and Bees...can I bunny trail or what?!?!
Saturday, December 26, 2015
JJ Update: Misc and Apraxia Oct/Nov/Dec
Three months with no update on JJ...there is so much to tell!
JJ is showing huge improvements in so many areas. It is exciting to watch.
1. Word Retrieval: I have learned that JJ's issue is not a struggle to learn, per say, but in retrieving appropriate words. He has learned all of his colors with 99% accuracy. Sometimes he messes up yellow. Now we are working on those difficult shades of colors when, depending on who you ask, it may be yellow...or it may be orange;) We have moved onto shapes...he is getting it:)
I would say that, given enough time, he is able to retrieve the words he is looking for about 80% of the time now. The rest of the time he is now readily willing to ask "what is that again?" or "what is that I eat again?" Sometimes after he asks the question he is able to answer himself before we figure out it:) I try to find a pattern in the words he can't retrieve but there doesn't seem to be a pattern to it. One would think that it would be more novel or less used words, but sometimes it is words that he uses often (like cheerios). He will still ask "What I eat tomorrow?" which means "what did I eat yesterday that I liked?" Sometimes he will ask "what I eat last time?" Of course that is a very open question and we have to use context and him pointing to it, saying who he ate it with, where he ate it at, etc for us to figure out what the food was.
An example is that he loves corn dogs. He, however, cannot seem to remember the word "corn dog." So, he will ask "can I have one of those hot dogs with the stuff on it?" We always respond with "A corn dog?" to be sure that he gets feedback on what the word really is, but he can never retrieve it correctly. One of these days it will come:)
1a. Letter Retrieval: In October we started intentional home school preschool with him. In two months he can now identify A, B, C, and D (He still calls /e/ /a/ which tells me he knows the letter but can't articulate it correctly yet). We are soooo happy! Rather than teaching him the names of the letters, we are just teaching him the sounds for now. We have been told that will create less confusion for him as he tries to learn/retrieve only one piece of information for each letter (except vowels. We will deal with that later;)
2. Pattern Recognition: Boy or boy is this kid good with patterns. He may not be able to retrieve the word to tell me what comes next (e.g. circle, etc) but he can show me. I think it comes from all of the video games and Kindle/Ipad apps that the kid plays with (although that is a "chicken and egg" question - maybe he is good at those because he is good at patterns?). He can't read but he knows exactly what button to push/swipe to get anything to happen. He is leaps and bounds beyond me in understanding those things.
2. Frustration Tolerance: With his new found retrieval of words, he is MUCH MUCH less likely to have a temper tantrum. I would say that if he has one a week it is a lot (the full out screaming flailing tantrums where he needs to be removed to his room to calm down as he will not tolerate being in our presence to calm). Thankfully even in those situations he calms very quickly once left alone and comes back apologetic and peaceful. Grace ramps up in those situations so it is always surprising to us that he calms down when left alone. He did have one of his tantrums in front of my brother last month, but I don't think he has more than 3 since then. Since he used to have 1 - 3 day daily, it is a delightful improvement:)
2a. Repeated Requests: Not having a full out temper tantrum is one thing. Repeatedly asking for something when being told "no" is entirely something else. This kid has the stubborn tenacity of a bull. He certainly teaches us that if we are going to bother to say "no" there had better be a good, detailed reason for it that goes far beyond it being inconvenient for us. He does very well with logical answers. He does not do well if it is inconsistent with something we have allowed in the past (unless there is a reason for the disparity).
3. Articulation - I am learning the difference between articulating words and word retrieval. They are obviously very different but I never had cause to have to think about it before. His articulation is probably at about 90% of the time understandable by our family. I know that he is not understood at that level by people outside of the family, but it is delightful that we can understand him so well. In this category novel words are the hardest for us as we do not yet know how he says a word. However, I think that it is probably only 1 - 2 times a week that he asks for something that we cannot figure it out by context or other verbal/physical cues that he gives. With that said, usually he says a string of syllables and we catch the main words and then interpret what the rest of the words must have been. But it is still a huge improvement for him and makes him, and us, happier that we can communicate so well:)
4. Preschool: learning is not a problem for him. He learns information very quickly. However, being bored with a school task is a very big problem for him. We learned quickly that he will deliberately answer us incorrectly once he knows something and is just bored with us asking him again. He soaks up information quickly and is extremely curious. Therefore, doing it the rote habitual way every day does not fly with him. I have learned from watching his speech pathologist work with him how to keep him engaged. I am thankful for her expertise.
5. Switching Therapists: that leads to the next sad news. He has had 2 speech language pathologists over the past 10 months. I am sooo thankful for each of them and the role they played in what he needed at the time. But now the organization has taken on a new contract and these two therapists will be switched to inpatient work and we will be getting a different therapist. God helped move my heart when we showed up 2 weeks ago and the new therapist was there since his current one had a medical emergency. So when they called me last week about the change I was able to know who the new one was and know that JJ worked well with her. Apparently she has even more training with Apraxia than the last one so I will have to trust God with his. I guess it was unrealistic to expect that we would have the same SLP for his entire 3+ years of therapy. I worry that he will backslide since the new person won't know what has been doing, but they assured me she would be fully briefed. It has just been hard to know that the one we started with (the one who diagnosed him, started with him, taught me so much about Apraxia, was so patient with him for the months he would only hide under my legs on the floor and barely engage her at all, and who prayed for him by name every night) will not longer be working with him. On the up side...are you ready?????
JJ HAS BEEN GOING IN TO THE SLP BY HIMSELF!!!!!!!!!!!!!!!!!!!!!!!!!! Even when he met the new person last time!!!! He knows where I am sitting and if he hears a noise in the lobby he opens his therapy door to see if I left him, but he is going into therapy by himself! I can hear everything through the door and he seems to be doing better than if I were in there. He accepts her (their) direction without challenge. He is doing great:)
5a. Stranger Anxiety: In general he seems to be improving with his willingness to talk to strangers although still stares a lot or grunts his "yes" if someone asks him a question. However, in a public place he only insists on my holding him less than 10% of the time - he is getting more comfortable! He has no problem tearing around the church by himself with 200 people milling about (that is not the greatest thing, but I am choosing to see the blessing in it;)
6. Sleep: ehhhh, still chaotic and unpredictable. He had a week about a month ago where he was not falling asleep until 1:30 a.m. I changed up some routine for my own sanity (and need for sleep) and it has worked. Now he falls asleep in our bed (usually around 11:30), and I carry him to his bed and he sleeps usually until 5:30 - 6:30 when he come crawling back in our bed. Today he actually slept in his own bed until he woke for the day! I suspect he will be gone from the house before his sleep patterns actually look like any normal pattern. The only problem for me is that my body now wakes me up at 6:30 anticipating he will be waking me and crawling in with us so I can't fall back asleep (I hate being woke up and if there is a chance of it I simply cannot fall asleep - it is quite annoying).
7. Growth: He has been eating a fair amount for him. He is so excited that he can now almost reach the end of the tub with his toes when laying down in the bath. I measured him and he...has grown 4 1/2 inches in a year!!!!!!!!!!!!!!!!! He has grown 2 inches just since May! He is currently at the 50th percentile:) For so long we were thrilled when he was at the 20th percentile, happy that he was actually on the growth chart. I am so thankful for the speech therapy helping him learn to swallow better so he eats better:) It isn't just an issue of swallowing, but the nausea that he seemed to wake with before doesn't seem to be as much of an issue. He hasn't gotten car sick in several months. He just doesn't seem interested in much food (wish I had that problem!).
8. Routine: JJ is all about routine. Not to the point of him being autistic like - but he likes his routine. For example, at bedtime: he must watch one Garfield (he can be persuaded to watch another short show if need be), then a bath with bubbles (a few drops of Lavender to get him sleepy;) and he insists on Epsom salts (yes, he is an odd child;), with dinosaurs and other toys. After that he has a chair he must sit in while I feed him a bowl of cereal. He is willing to switch that up some but goes on long streaks. For 2 weeks it may be Kix, the Cheerios (hates honey nut - must be plain), or Chex. For 6 months he has refused sugar, but in the past few days he wants sugar again. Then he wants a glass of plain white milk (he was on a chocolate milk kick for awhile, but he is back to white now). After that he brushes his teeth, I put Essential Oils on his feet to help him sleep, and he crawls in my bed with a pillow and falls asleep. It usually takes him about 15 - 20 minutes to fall asleep most of the time. It used to take him over an hour. Sometimes it is even just 5 minutes! Since it usually takes me over an hour to fall asleep I am happy with 15 - 20 minutes:)
He also likes routine with food. He likes it prepared a certain way, determines if he needs a spoon or fork with that food, 80 percent of the time he says "mommy you feed me?" He likes "chicken" (all meat is "chicken" to him or he won't eat it) but it must have extra seasoning on the plate for him to dip the meat into (that is a habit we can thank his biggest brother for emulating for him;)
Changing his clothes in the morning is also something he thankfully will now do for himself, but he has a very specific plan on what happens, in what order, what gets worn, etc. Heaven forbid if someone actually suggests certain clothes for him to wear or not wear. I have decided that as long as he is dressed for church, I will not care what state of wrinkedness they clothes will be in. I simply got rid of the "every day pants" with the holes in them so he couldn't choose them lol!
9. Language: I never used to understand the difference between learning "articulation/speech" and "language." But, now I do. JJ has the most interesting ways of constructing sentences. We joke that he is like Yoda. I always find it endearingly cute, but I also always forget to write it down. It is like listening to someone where English is their second language and the verbs and nouns are not in the correct order for English. I don't think about it too much since it is just the way that he talks, but everyone now and again it will hit me how odd it is to others.
Even so, he has a grasp on a lot of "language" concepts that our Middles struggled with. For example, location prepositions. For something different in preschool one day I spent a lot of time asking under/over/on/below/etc questions. He got them all correct. It is fascinating to me to try to understand what he does understand and what he does not.
10. Why? And, finally, his biggest change is that he has finally moved into the "why" stage. Fully and completely. Everything is met with a "why." And because he is so smart and so curious the answers required are much more extensive than we ever had to do with the Middles. He keeps us on top of our game;)
As I type this and focus on "language," I have to laugh at myself. After working with Buddy teaching him about Gerunds, Participles, etc I realize that I don't understand them, have no motivation to try to understand them, and probably drive crazy all of you English people who read this and see my many language errors. I never learned about them in high school and can remember a professor in Graduate school putting red ink all over my papers about "hanging participles." I still don't get it lol! That all gives me perspective that no matter what JJ's issues are, his tenacity and desire to learn will get him wherever God needs him to go in life...even if he does speak like Yoda;)
JJ is showing huge improvements in so many areas. It is exciting to watch.
1. Word Retrieval: I have learned that JJ's issue is not a struggle to learn, per say, but in retrieving appropriate words. He has learned all of his colors with 99% accuracy. Sometimes he messes up yellow. Now we are working on those difficult shades of colors when, depending on who you ask, it may be yellow...or it may be orange;) We have moved onto shapes...he is getting it:)
I would say that, given enough time, he is able to retrieve the words he is looking for about 80% of the time now. The rest of the time he is now readily willing to ask "what is that again?" or "what is that I eat again?" Sometimes after he asks the question he is able to answer himself before we figure out it:) I try to find a pattern in the words he can't retrieve but there doesn't seem to be a pattern to it. One would think that it would be more novel or less used words, but sometimes it is words that he uses often (like cheerios). He will still ask "What I eat tomorrow?" which means "what did I eat yesterday that I liked?" Sometimes he will ask "what I eat last time?" Of course that is a very open question and we have to use context and him pointing to it, saying who he ate it with, where he ate it at, etc for us to figure out what the food was.
An example is that he loves corn dogs. He, however, cannot seem to remember the word "corn dog." So, he will ask "can I have one of those hot dogs with the stuff on it?" We always respond with "A corn dog?" to be sure that he gets feedback on what the word really is, but he can never retrieve it correctly. One of these days it will come:)
1a. Letter Retrieval: In October we started intentional home school preschool with him. In two months he can now identify A, B, C, and D (He still calls /e/ /a/ which tells me he knows the letter but can't articulate it correctly yet). We are soooo happy! Rather than teaching him the names of the letters, we are just teaching him the sounds for now. We have been told that will create less confusion for him as he tries to learn/retrieve only one piece of information for each letter (except vowels. We will deal with that later;)
2. Pattern Recognition: Boy or boy is this kid good with patterns. He may not be able to retrieve the word to tell me what comes next (e.g. circle, etc) but he can show me. I think it comes from all of the video games and Kindle/Ipad apps that the kid plays with (although that is a "chicken and egg" question - maybe he is good at those because he is good at patterns?). He can't read but he knows exactly what button to push/swipe to get anything to happen. He is leaps and bounds beyond me in understanding those things.
2. Frustration Tolerance: With his new found retrieval of words, he is MUCH MUCH less likely to have a temper tantrum. I would say that if he has one a week it is a lot (the full out screaming flailing tantrums where he needs to be removed to his room to calm down as he will not tolerate being in our presence to calm). Thankfully even in those situations he calms very quickly once left alone and comes back apologetic and peaceful. Grace ramps up in those situations so it is always surprising to us that he calms down when left alone. He did have one of his tantrums in front of my brother last month, but I don't think he has more than 3 since then. Since he used to have 1 - 3 day daily, it is a delightful improvement:)
2a. Repeated Requests: Not having a full out temper tantrum is one thing. Repeatedly asking for something when being told "no" is entirely something else. This kid has the stubborn tenacity of a bull. He certainly teaches us that if we are going to bother to say "no" there had better be a good, detailed reason for it that goes far beyond it being inconvenient for us. He does very well with logical answers. He does not do well if it is inconsistent with something we have allowed in the past (unless there is a reason for the disparity).
3. Articulation - I am learning the difference between articulating words and word retrieval. They are obviously very different but I never had cause to have to think about it before. His articulation is probably at about 90% of the time understandable by our family. I know that he is not understood at that level by people outside of the family, but it is delightful that we can understand him so well. In this category novel words are the hardest for us as we do not yet know how he says a word. However, I think that it is probably only 1 - 2 times a week that he asks for something that we cannot figure it out by context or other verbal/physical cues that he gives. With that said, usually he says a string of syllables and we catch the main words and then interpret what the rest of the words must have been. But it is still a huge improvement for him and makes him, and us, happier that we can communicate so well:)
4. Preschool: learning is not a problem for him. He learns information very quickly. However, being bored with a school task is a very big problem for him. We learned quickly that he will deliberately answer us incorrectly once he knows something and is just bored with us asking him again. He soaks up information quickly and is extremely curious. Therefore, doing it the rote habitual way every day does not fly with him. I have learned from watching his speech pathologist work with him how to keep him engaged. I am thankful for her expertise.
5. Switching Therapists: that leads to the next sad news. He has had 2 speech language pathologists over the past 10 months. I am sooo thankful for each of them and the role they played in what he needed at the time. But now the organization has taken on a new contract and these two therapists will be switched to inpatient work and we will be getting a different therapist. God helped move my heart when we showed up 2 weeks ago and the new therapist was there since his current one had a medical emergency. So when they called me last week about the change I was able to know who the new one was and know that JJ worked well with her. Apparently she has even more training with Apraxia than the last one so I will have to trust God with his. I guess it was unrealistic to expect that we would have the same SLP for his entire 3+ years of therapy. I worry that he will backslide since the new person won't know what has been doing, but they assured me she would be fully briefed. It has just been hard to know that the one we started with (the one who diagnosed him, started with him, taught me so much about Apraxia, was so patient with him for the months he would only hide under my legs on the floor and barely engage her at all, and who prayed for him by name every night) will not longer be working with him. On the up side...are you ready?????
JJ HAS BEEN GOING IN TO THE SLP BY HIMSELF!!!!!!!!!!!!!!!!!!!!!!!!!! Even when he met the new person last time!!!! He knows where I am sitting and if he hears a noise in the lobby he opens his therapy door to see if I left him, but he is going into therapy by himself! I can hear everything through the door and he seems to be doing better than if I were in there. He accepts her (their) direction without challenge. He is doing great:)
5a. Stranger Anxiety: In general he seems to be improving with his willingness to talk to strangers although still stares a lot or grunts his "yes" if someone asks him a question. However, in a public place he only insists on my holding him less than 10% of the time - he is getting more comfortable! He has no problem tearing around the church by himself with 200 people milling about (that is not the greatest thing, but I am choosing to see the blessing in it;)
6. Sleep: ehhhh, still chaotic and unpredictable. He had a week about a month ago where he was not falling asleep until 1:30 a.m. I changed up some routine for my own sanity (and need for sleep) and it has worked. Now he falls asleep in our bed (usually around 11:30), and I carry him to his bed and he sleeps usually until 5:30 - 6:30 when he come crawling back in our bed. Today he actually slept in his own bed until he woke for the day! I suspect he will be gone from the house before his sleep patterns actually look like any normal pattern. The only problem for me is that my body now wakes me up at 6:30 anticipating he will be waking me and crawling in with us so I can't fall back asleep (I hate being woke up and if there is a chance of it I simply cannot fall asleep - it is quite annoying).
7. Growth: He has been eating a fair amount for him. He is so excited that he can now almost reach the end of the tub with his toes when laying down in the bath. I measured him and he...has grown 4 1/2 inches in a year!!!!!!!!!!!!!!!!! He has grown 2 inches just since May! He is currently at the 50th percentile:) For so long we were thrilled when he was at the 20th percentile, happy that he was actually on the growth chart. I am so thankful for the speech therapy helping him learn to swallow better so he eats better:) It isn't just an issue of swallowing, but the nausea that he seemed to wake with before doesn't seem to be as much of an issue. He hasn't gotten car sick in several months. He just doesn't seem interested in much food (wish I had that problem!).
8. Routine: JJ is all about routine. Not to the point of him being autistic like - but he likes his routine. For example, at bedtime: he must watch one Garfield (he can be persuaded to watch another short show if need be), then a bath with bubbles (a few drops of Lavender to get him sleepy;) and he insists on Epsom salts (yes, he is an odd child;), with dinosaurs and other toys. After that he has a chair he must sit in while I feed him a bowl of cereal. He is willing to switch that up some but goes on long streaks. For 2 weeks it may be Kix, the Cheerios (hates honey nut - must be plain), or Chex. For 6 months he has refused sugar, but in the past few days he wants sugar again. Then he wants a glass of plain white milk (he was on a chocolate milk kick for awhile, but he is back to white now). After that he brushes his teeth, I put Essential Oils on his feet to help him sleep, and he crawls in my bed with a pillow and falls asleep. It usually takes him about 15 - 20 minutes to fall asleep most of the time. It used to take him over an hour. Sometimes it is even just 5 minutes! Since it usually takes me over an hour to fall asleep I am happy with 15 - 20 minutes:)
He also likes routine with food. He likes it prepared a certain way, determines if he needs a spoon or fork with that food, 80 percent of the time he says "mommy you feed me?" He likes "chicken" (all meat is "chicken" to him or he won't eat it) but it must have extra seasoning on the plate for him to dip the meat into (that is a habit we can thank his biggest brother for emulating for him;)
Changing his clothes in the morning is also something he thankfully will now do for himself, but he has a very specific plan on what happens, in what order, what gets worn, etc. Heaven forbid if someone actually suggests certain clothes for him to wear or not wear. I have decided that as long as he is dressed for church, I will not care what state of wrinkedness they clothes will be in. I simply got rid of the "every day pants" with the holes in them so he couldn't choose them lol!
9. Language: I never used to understand the difference between learning "articulation/speech" and "language." But, now I do. JJ has the most interesting ways of constructing sentences. We joke that he is like Yoda. I always find it endearingly cute, but I also always forget to write it down. It is like listening to someone where English is their second language and the verbs and nouns are not in the correct order for English. I don't think about it too much since it is just the way that he talks, but everyone now and again it will hit me how odd it is to others.
Even so, he has a grasp on a lot of "language" concepts that our Middles struggled with. For example, location prepositions. For something different in preschool one day I spent a lot of time asking under/over/on/below/etc questions. He got them all correct. It is fascinating to me to try to understand what he does understand and what he does not.
10. Why? And, finally, his biggest change is that he has finally moved into the "why" stage. Fully and completely. Everything is met with a "why." And because he is so smart and so curious the answers required are much more extensive than we ever had to do with the Middles. He keeps us on top of our game;)
As I type this and focus on "language," I have to laugh at myself. After working with Buddy teaching him about Gerunds, Participles, etc I realize that I don't understand them, have no motivation to try to understand them, and probably drive crazy all of you English people who read this and see my many language errors. I never learned about them in high school and can remember a professor in Graduate school putting red ink all over my papers about "hanging participles." I still don't get it lol! That all gives me perspective that no matter what JJ's issues are, his tenacity and desire to learn will get him wherever God needs him to go in life...even if he does speak like Yoda;)
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