Yes! An entire week has gone well! I am not sure I can remember when the last time that was. THANK YOU to everyone who has prayed for us. Obviously it has made an impact.
Grace has had a week that has gone as well as we could ever reasonably expect. I have been very pleasantly surprised that we have had no major issues (of course the...less than major ones continue). We need your continued prayer for how to parent her and make future decisions. I don't to go into too many public details about what we have been dealing with, but please know that it has been extremely difficult and this past week has been a relief.
We have decided that we need more help with her. We are seeking people who are willing to meet with her regularly to just be a friend/mentor, offer us respite, and babysit. We had to be gone today and we knew it was too much to expect Buddy to deal with all 4 of the younger ones, so we sought out a babysitter for Grace. It worked better for everyone involved (we gave the babysitter some time to think through whether she is willing to do it again...but we sure hope so!!) I think that it is an option that we need to continue to use regularly, especially with Beautiful moving away...
We took Beautiful to New Student Registration today! Another step in "letting go." I only teared up once. Her class schedule is pretty good, I think. Pretty much she has class from 10 - 3 with two 9 a.m. days of the week. We hope it is only going to be 13.5 credits. I got to see the outside of the house they are moving into. I am excited for getting into the house and getting it set up for them. I will miss her so much...
Yesterday we got her signed up for her online math class. Now to figure out how to navigate that system (it is a different college and thus a different platform to learn). Ai yi yi!!!
JJ is doing GREAT! Remember when I have talked about how we have to carry him as he gets so fatigued? He hasn't asked us to carry him in weeks - maybe longer (unless we wake him up, he really REALLY hates to be woken up and he isn't able to walk well right away). Sunday night he RODE HIS BIKE for TWO MILES!!!!!!!!! Yes! Two miles!!!!!!!! Last night he didn't quite have the endurance but he rode his bike/walked for 1 1/2 miles!!!! My husband and I used to walk/ride bikes with Beautiful and Buddy all of the time when they were young. We have a 2 mile loop we always walk and they did it with us. That all stopped when the Middles came as it was much more like an exercise in walking headless chickens. But now we are back to trying to get them walking and they did great:)
It was so much fun and very delightful to just listen to him on the walks. The SLP has repeatedly told us that his constant movement is a way that helps him to retrieve language. It is activating the motor cortex so that he can speak/retrieve better. Wow. He talked NON-STOP on the walks. He kept up the cutest commentary the whole time. I was so tickled! It was like listening to Grace, whatever thought was in his head was coming out of his mouth lol! It sounded something like this:
"There is a stick. I rode over the bump. I smell the grass. There is a ribbit (frog). Is that Mike's? Oh! I have to go around that stick. I see a dog. Oh my legs need a rest. Why do I have to ride on the side? (so you don't get hit by a car) but you are in the middle? (to keep you from getting hit by the car lol!). I don't want to fall in the hole (the sewer holes)." It was so precious! He is doing this more and more but it was so pronounced while he was doing this activity.
The other day Superman was putting his clothes away and JJ decided that he wanted his clothes to be kept in the drawers under his bed rather than in his dresser in my bedroom. So, he kept up a monologue while he was carrying clothes back and forth and got them all situated.
He is getting so much more self-sufficient. He is using the restroom by himself, goes outside by himself, dresses himself, gets his own popsicles, etc. About the only two things that he really still insists on us with are feeding him (it is just too much to finish an entire meal when he has to not only do the fine motor skills of getting the food to his mouth but the intricate work that we usually don't think about of chewing and swallowing) and putting himself to sleep. He is fully in 5T pants now! I just can't believe how much he has grown in 5 months! How much stronger he is! How much more confident he is!
He likes to kick the soccer ball around and actually has pretty good aim, etc. Last night while we were doing that he informed me that he wanted to play soccer on a team!!!! When I informed him that the Middles were too old to be on his team and he would have to do be on one without kids that he knew he said, "but you will come and watch me?" I said, "Of course I will." He said, "OK, then you will be there in case I get hurt." and just went on with the game. The kid who won't even let us leave him in Sunday School or Nursery wants to play soccer! Now, when it actually comes time to be without us, who knows what will happen. But he is at least considering it!!! Separation Anxiety seems to be improving somewhat too!!!
We were at a graduation in a building full of strangers a few weeks ago. He had no siblings around him, yet he WALKED TO THE OTHER SIDE OF THE ROOM BY HIMSELF to grab some food! I couldn't believe it! He had to weave in and out of people to do it and he did it! Yes sir, he is improving!
Monday he walked over to talk to the neighbor. The neighbor has had a special friendship with each of our kids but JJ has appreciated him more from afar. JJ actually walked over there (again, with no siblings around!) to have a conversation with him. AND, the neighbor was actually able to understand every response that JJ gave him! Yay!!
We have been singing nursery rhymes and playing London Bridges. He gets such a kick out of it lol! He is singing along with us (obviously he doesn't do it well, but he is trying!) and asks for London Bridges.
Another odd thing about JJ is that he has hated and refused to be read to. He is now letting us (and sometimes even insisting himself) that we read 2 books at bedtime. He is doing better with scissors. He has such and incredibly looooong way to go with writing. We got him a dry erase board with a fine pen and the board is lined to write letters one. He makes the tiniest little chicken scratches and is not willing to let us direct him. So, we will just be happy with all of the other gains and let that one go. That has been hard for me as by the time Buddy was this age he knew all of his letters and was actively reading. But...they are very different kids...
OK, I am just going on and on now.
Oh, I have SLEPT this week! Praise the Lord I have slept! AND, I only had one headache (it was Monday night, it was very, very painful, but it was only about 5 hours and Tylenol did actually relieve it (and a dark quiet room). I tell you I feel like a new woman! I am getting so much more done around the house. Big projects! What a difference a non-sleep addled mind makes for motivation lol! JJ has been sleeping in his own bed for a week and that makes such a difference to not have the little guy climbing in with us at 5 or 6 a.m. He does this periodically - going about a week or so of staying in his own bed. Then something happens. Last summer was terrible due to chiggers. JJ attracts them in huge numbers and then is up 1/2 the night begging ,"scratch them Mommy!!!" I will be making up some EO bug repellent this year to see if it works:)
Last time I made comment about him wetting our bed and us being happy that meant he was drinking enough. Oddly enough, he has stayed totally dry (not wetting his pull up much less his/our bed). That actually has me concerned as I am having trouble getting him to drink. I try to bribe him with smoothies and popsicles but mostly he just wants 2 glasses of milk at bedtime and doesn't drink the rest of the day. Sigh... He is one stubborn little fella...but we sure do adore him!!!
OK, enough of how well things are going. Off to watch Superman play baseball! I love watching him play! His team is doing great:)
Wednesday, May 27, 2015
Friday, May 22, 2015
Allergies, Headaches, Sleep...and a good 2 days: a mish mash of topics:)
Springtime is a glorious time of year with leaves budding, grass turning green, flocks blooming...and lilacs blooming. I love lilacs. LOVE the smell of lilacs. I do not think that there is a better aroma than lilacs. Our driveway is lined with lilac bushes. May is my favorite month as I get to smell them anytime I want. But...I have several family members who remind me every day that "those lilacs" are making them miserable. We don't get to enjoy open windows in the spring and fall due to our kiddos with intense inhalant allergies, but that is life:) Poor Buddy. Two years ago we went to Branson in May and he was MISERABLE. Last March/April we went to Disney World and Epcot Center had their garden/floral/whatever it was called gala and Buddy was MISERABLE. This year his face and eyes are swelled up and he is exhausted as he can't sleep. JJ is the next worse. Beautiful, Grace, and my husband are the next in line for how bad it is. Superman, Faith and I don't really have any trouble. That is surprising considering all of the years that Faith was on a nebulizer due to how bad she would get. All of the affected kids are sleeping more restlessly and therefore longer in the morning. Even Grace slept until NINE O'CLOCK this morning!!!!!! I am dosing them all up with allergy meds, essential oils, etc but so far they are still all pretty miserable.
So, that means JJ is sleeping less well. He coughs all of the time. It increasingly takes him until after midnight to fall asleep. He gets fitful sleep which means he wakes later than he used to. The last two days he didn't get up until 11:30! Which only worsens the bedtime cycle. But, that is just the way it is.
He usually crawls in bed with us sometime in the too early hours. Yesterday it was 5, today it was 6. He also usually wets our bed as he then sleeps so long. However, we are not upset about that. Back when Beautiful was a newborn she got the hang of nursing for a couple of days and then didn't eat but once a day for 3 days. It was a long weekend and we were not sure what to do. That Monday a Le Leche League woman came over in a blinding snowstorm and helped us out. When her digestive system finally started to work since she was then eating we were thrilled! No matter how many diapers that child blew out (she was our blow out child - sorry to embarrass you dear;) we always maintained the perspective that a blown out diaper was far better than those horrible 3 days that we could not get her to nurse and therefore she wasn't wetting.
The same has gone for JJ. We have fought for SO LONG to get him to consume liquids. We tried so many formulas to try to get him to keep down. Then me going through the process of nursing him, and the generous women who wet nursed him and donated breast milk during that process just so he would actually keep nutrition him. Once that all got sorted out and he actually kept liquids down, then we had the issues that he didn't want to drink very often. Now we understand that it was due to the Apraxia and the swallowing issues, but getting liquid in him has been difficult. He does NOT like water, does not prefer juice, and pretty much only wants milk (we drink raw milk). He has discovered that he likes smoothies though, so I make him one+ with frozen fruit every day to increase his "liquid" intake. With him waking so late and not wanting to eat/drink until early afternoon that leads to him doing most of his drinking at night after he body/brain has "woke up." That leads to wet beds most mornings. Which, of course, usually means our bed;) But...we never complain. A wet bed means that he is drinking enough!!! Yay!!!!
But, him in our bed means that my sleep is disrupted. No new news there. However, I have discovered that lack of sleep is one of my biggest triggers for my migraines. I typically get 6 hours of interrupted sleep at night. I have pretty much had a migraine this entire month. Before that I think I had a little over a week free of one. They are much more frequent now and last for weeks now. The stress we are under right now is over the top of normal. That affects my sleep and is another trigger for my headaches. I am so tired during the days that by early afternoon I am useless. My 12 and 14 hour work days now require me to drink two organic energy drinks whereas before I could easily only about 1/2 of the time have to drink 1. I am just plain exhausted. Once I am woke in the morning, there is really no good sleep left in the night for me. To prepare for my Monday and Tuesday work schedule I now always have to take a nap on Sunday afternoons. I keep the Sunday schedule completely cleared after church as I know I cannot "do" anything and still work on Monday and Tuesday.
Kid issues have been overwhelming. A couple of weekends ago it was the worse 2 days we have ever had. It was followed by a Sunday that when surprisingly (and confusedly) well. Then we had a couple of ok days, then several bad days, and so the cycle continues.
Right now we happen to be on day two of an ok cycle. Tuesday was Grace's last day of school. I had two days of exhausted loooong work days. Wednesday she did not do well, I expected it with the change in her routine, but that doesn't make it easier when it happens.
Wednesday I took JJ to speech therapy. He did pretty well. He was extremely energetic. However, he is clearly remembering at least the tune and some of the words of the songs she sings with him, and the nursery rhymes we are working on at home (singing them). He can sort and match like a whiz. She is working on not just speech with him now but language. He shocked me with the things he understood.
Wednesday night my husband informed me that he wanted to go fishing with Buddy on Thursday (Superman had a baseball game so it would have been too much for him to get up early and do that). I panicked. With Beautiful at work all day and my husband and Buddy gone I did not know how I was going to get through Thursday with the 4 kids by myself. Things have been so incredibly...bad.
So, when my husband got up to leave at 7:30 on Thursday...I burrowed my head back under 2 pillows, knew JJ was in the bed with me and couldn't get hurt or woke by the Middles (who were still sleeping at that time), and went back to sleep.
It was glorious! Not only did I fall back asleep until 9, but...the Middles actually occupied themselves without...drama...until I woke up!
AND...I actually had enough energy to be productive ALL DAY! Yay! I got tons of cleaning/organizing done! The kids were even as cooperative as I can ever realistically expect!!! I had one incident with Grace after lunch that I thought was "it." But...the interventions actually worked that time and the rest of the day went well:)
Then, last night I was so exhausted after a day of cleaning since I actually had enough energy to do so that at 10:00 (YES!!! TEN O'CLOCK!!! I NEVER get to bed before 12-1 a.m.) I informed my husband I was going to bed and he could put JJ to bed. I slept until 6 this morning!! EIGHT HOURS of uninterrupted sleep!!!!! I do not even know when the last time was that happened! At 6 JJ came in the bedroom saying "I'm wet!" He wet his own bed that time;) So I cleaned him up and put him in our bed, but couldn't fall back asleep so just got up to do my time on the treadmill (When I wake in the morning and know I can't sleep anymore I get on the treadmill. I do an hour 4 - 5 days a week).
Two days of good sleep! And two days of NO HEADACHE!!! And two days of Grace being...as calm/cooperative as we can expect her to be! I have to note this as I know it doesn't have often, and it won't happen for long, but I have great, greatly enjoyed these 2 days:)
I just re-read this and noted all of my exclamation marks and capital letters. I sound a little giddy. Heck, I am a little giddy! Two good days! Wow!
I want to thank those of you who have prayed for us since I posted Wednesday. It really has been better these 2 days:)
Wednesday, May 20, 2015
Grace Update
Ok, I have tried to write this many times. Each time I try to be real but also realistic but I end up in a long diatribe. So, I will leave it at this.
Things are horrible.
We need prayer. I don't know what we need. We vulnerably opened up to some people recently who listened authentically to our hearts and gave very helpful advice. It was such.a.relief. That gave me the courage to be honest here. We need your prayer. Something has to change...soon.
Things are horrible.
We need prayer. I don't know what we need. We vulnerably opened up to some people recently who listened authentically to our hearts and gave very helpful advice. It was such.a.relief. That gave me the courage to be honest here. We need your prayer. Something has to change...soon.
Thursday, May 14, 2015
Apraxia Awareness Day! Session 13
Today is Apraxia Awareness Day! It is an important day as many people do not understand Apraxia, and even more have never heard of it. I had heard the name before JJ was diagnosed and knew it had to do with speech issues, but had no idea what it all entailed.
This weekend we found out about 2 more children within our wide extended circle who have Apraxia and are very young. I really enjoyed talking to the one mother at a graduation for a long time and comparing the symptoms and issues. I look forward to making connection with the other mom soon as well.
This week's therapy session:
His SLP was ecstatic that JJ was able to trace an outline of a fish AND then cut it out properly using a scissors!
He was able to match pictures of faces with different emotions - AND label them!! (retrieval)
He spontaneously sang for her! (intonation and retrieval)
He is learning the new songs and she does some "melodic intonation" work with him, and we are to continue that at home. It teaches him to anticipate the next word, work on naming body parts (he knows them receptively, but this is an expressive/retrieval exercise).
He is able to make the /f/ sound (a blessing!!!!), but is very inconsistent with it. We are to be working on making that more consistent...while not making him feel like we are hounding him and thus shaming him with the constant reminder that he is not speaking "right." Not an easy task.
He seems to be getting more comfortable in therapy over the past 4 months (FINALLY!). He does not hide behind me or under my legs as often and is staying on task longer at a time. Thus, the sessions involved a great percentage of actual "therapy" and not just trying to get him to feel safe with her.
Last night Superman had his first baseball game. JJ felt very safe and comfortable to be playing on the playground equipment right near where we were sitting (he had Grace and Faith with him). He even let a total strange girl HOLD HIS HAND! Now, granted that was not something we were really thrilled with...but to get that comfortable with a stranger so quickly was a first!
He continues to have full out bodily temper tantrums 1 - 2 times a day but we are understanding more of what triggers them. Obviously the word "no" is a big trigger, but when we analyze it, it is more about us having interrupted his routine/expectation. For example, when we got home from therapy yesterday it was the exact time that the school van was in the driveway dropping off Superman and our friends who take/bring Grace to school were right behind me. I had 10 minutes before I had to get to work so I just parked on the street. Grace had run to the van driver to get a hug from her (since she doesn't ride the van anymore and insists on hugging everyone in a 5 mile radius) so the van wasn't getting out of the driveway yet I had to transition to get to work and thought parking there was not a big deal. JJ WOULD NOT get out of the car. He would not even let me unbuckle him. I wouldn't have cared if I was in the driveway, but being on the street I couldn't just leave him to run to the house as he could have then gotten out of the car and got run over. So, I finally had to ask my husband to come and help me muscle JJ out of his car seat and get him into the house. The whole time he was yelling (and flailing) that he wanted to be in the driveway. He has his set routines/expectations for how things are to go and is pretty rigid about them. He is NOT on the Autism Spectrum...but he certainly wants things to be a certain way. Most of the issues we don't even realize until something unexpected like this comes up. It makes us be much more aware of the importance of routine and structure for him. Of course, he also has a tantrum when we tell him "no, you can't have a second can of pop" (at a graduation) or "no we are not buying a bag of chips at the concession stand." Those issues can be addressed by us anticipating and discussing it ahead of time with him...but it is sure exhausting to try to anticipate all of his expectations lol!
He also gets really worked up with Grace is screaming at us. He gets pretty hysterical and overstimulated and will start to also yell at us and get physically aggressive. But...that is for another post on Grace that I have been mulling over. Things have been very bad on that front...
This weekend we found out about 2 more children within our wide extended circle who have Apraxia and are very young. I really enjoyed talking to the one mother at a graduation for a long time and comparing the symptoms and issues. I look forward to making connection with the other mom soon as well.
This week's therapy session:
His SLP was ecstatic that JJ was able to trace an outline of a fish AND then cut it out properly using a scissors!
He was able to match pictures of faces with different emotions - AND label them!! (retrieval)
He spontaneously sang for her! (intonation and retrieval)
He is learning the new songs and she does some "melodic intonation" work with him, and we are to continue that at home. It teaches him to anticipate the next word, work on naming body parts (he knows them receptively, but this is an expressive/retrieval exercise).
He is able to make the /f/ sound (a blessing!!!!), but is very inconsistent with it. We are to be working on making that more consistent...while not making him feel like we are hounding him and thus shaming him with the constant reminder that he is not speaking "right." Not an easy task.
He seems to be getting more comfortable in therapy over the past 4 months (FINALLY!). He does not hide behind me or under my legs as often and is staying on task longer at a time. Thus, the sessions involved a great percentage of actual "therapy" and not just trying to get him to feel safe with her.
Last night Superman had his first baseball game. JJ felt very safe and comfortable to be playing on the playground equipment right near where we were sitting (he had Grace and Faith with him). He even let a total strange girl HOLD HIS HAND! Now, granted that was not something we were really thrilled with...but to get that comfortable with a stranger so quickly was a first!
He continues to have full out bodily temper tantrums 1 - 2 times a day but we are understanding more of what triggers them. Obviously the word "no" is a big trigger, but when we analyze it, it is more about us having interrupted his routine/expectation. For example, when we got home from therapy yesterday it was the exact time that the school van was in the driveway dropping off Superman and our friends who take/bring Grace to school were right behind me. I had 10 minutes before I had to get to work so I just parked on the street. Grace had run to the van driver to get a hug from her (since she doesn't ride the van anymore and insists on hugging everyone in a 5 mile radius) so the van wasn't getting out of the driveway yet I had to transition to get to work and thought parking there was not a big deal. JJ WOULD NOT get out of the car. He would not even let me unbuckle him. I wouldn't have cared if I was in the driveway, but being on the street I couldn't just leave him to run to the house as he could have then gotten out of the car and got run over. So, I finally had to ask my husband to come and help me muscle JJ out of his car seat and get him into the house. The whole time he was yelling (and flailing) that he wanted to be in the driveway. He has his set routines/expectations for how things are to go and is pretty rigid about them. He is NOT on the Autism Spectrum...but he certainly wants things to be a certain way. Most of the issues we don't even realize until something unexpected like this comes up. It makes us be much more aware of the importance of routine and structure for him. Of course, he also has a tantrum when we tell him "no, you can't have a second can of pop" (at a graduation) or "no we are not buying a bag of chips at the concession stand." Those issues can be addressed by us anticipating and discussing it ahead of time with him...but it is sure exhausting to try to anticipate all of his expectations lol!
He also gets really worked up with Grace is screaming at us. He gets pretty hysterical and overstimulated and will start to also yell at us and get physically aggressive. But...that is for another post on Grace that I have been mulling over. Things have been very bad on that front...
Friday, May 8, 2015
Graduation Celebration and birthday party!!
Last Saturday we had Beautiful's graduation celebration! It was a delightful time and it went off without any hitches (to my knowledge:) I am so thankful for a friend of ours who helped us with all of the decorating and thinking through the celebration since she has done it twice before. Beautiful and I had shopped a few days before (with our friend), along with doing wedding dress alterations and more shopping for the wedding, etc. We had bought my graduation dress at the first store of the morning and hers at the last store in the late afternoon. When I got home and was putting my dress away it occurred to me that we had both bought royal blue dresses lol! People kept asking us if we had planned it that way. Nope, I just have a bad memory lol!
The day was also Buddy's 15th birthday. We got him his own cake. He had a friend over the night before to go watch the latest Avenger's movie (Buddy is thrilled that his birthday always falls on the opening weekend of some new Marvel movie lol!) Two other friends then played board games with them through the graduation party. It was a far more enjoyable situation for them than to mingle with guests:) I was so thankful for our friend who offered the afternoon activities:)
I was so stressed about the food ahead of time. Would there be enough? Would there be too much if no body came? How to get it all served? We had 4 amazingly wonderful women who willingly very, very competently took over all of the food process. I also reduced my stress by not cooking any of it myself (so thankful for the local grocery store!) The women not only did all of the prep (we had a soccer game that morning so by the time we got back, got the kids showered and everyone dressed it was an hour before the celebration!) but then also did the cleanup. I did not expect that! I was able to just be a hostess, greeting people and getting to talk to everyone. There was the perfect number of people at just the right flow that I felt like I got to have some kind of meaningful conversation with just about everyone. It built my confidence a little for the wedding...but we will be potentially talking about over 300 people instead of just 100;)
The graduation really touched me. Everyone who came to celebrate with us was so wonderful. All of her home school basketball team friends who came was so thoughtful - especially since she didn't even play this year. I was thankful for the warm weather so that we could wheel my mother in law down from and back the nursing home so she could participate too. Thankfully the nursing home is only 6 blocks away:)
Probably the most touching part of the party for me were the 5 women who sacrificed their Saturday to cheerfully, thoughtfully, competently, and lovingly serve our family by doing the decorations and the food. I actually spent quite a bit of time that night thinking over why it touched me so much. I realized that in my life I have not had people who came around me and sacrificially served me. I am more used to people looking for excuses not to be involved, not caring about what I care about, making me feel guilty for asking for help, or making it clear that it is an obligation that they would rather not be a part of. Thus, I have such a hard time asking for help and tend to try to be an island unto myself (which I am being forced off of with current life situations). I was, and our family was totally blessed by these women. I am getting a bit sappy here so I will stop now:)
I did not let myself get too sentimental about this being Beautiful's graduation and that it means she is leaving soon. I figure that getting ready for the wedding and college will keep me occupied enough. However, come the wedding date I know I will be a total wreck. It is one thing to send her off to college when she will still depend on us and be home on weekends. It is another when we will be handing her off to permanently cleave to someone else... Sigh...I am getting emotional and need to stop this. I will miss her so incredibly much. But, we also could not have handed her over to a more worthy man who adores her. All will be well:)
Another good thing came out of the graduation party...Buddy, our hermit child, hates to have his picture taken...or be around crowds of people. When I made the big 4x3 foot collage of photos of Beautiful's life he remarked, "Huh, I guess I will have to start letting Mom take pictures of me or she won't have anything for my collage!" Yay! That means he is at least resigned to having some kind of celebration for his graduation lol!
The day was also Buddy's 15th birthday. We got him his own cake. He had a friend over the night before to go watch the latest Avenger's movie (Buddy is thrilled that his birthday always falls on the opening weekend of some new Marvel movie lol!) Two other friends then played board games with them through the graduation party. It was a far more enjoyable situation for them than to mingle with guests:) I was so thankful for our friend who offered the afternoon activities:)
I was so stressed about the food ahead of time. Would there be enough? Would there be too much if no body came? How to get it all served? We had 4 amazingly wonderful women who willingly very, very competently took over all of the food process. I also reduced my stress by not cooking any of it myself (so thankful for the local grocery store!) The women not only did all of the prep (we had a soccer game that morning so by the time we got back, got the kids showered and everyone dressed it was an hour before the celebration!) but then also did the cleanup. I did not expect that! I was able to just be a hostess, greeting people and getting to talk to everyone. There was the perfect number of people at just the right flow that I felt like I got to have some kind of meaningful conversation with just about everyone. It built my confidence a little for the wedding...but we will be potentially talking about over 300 people instead of just 100;)
The graduation really touched me. Everyone who came to celebrate with us was so wonderful. All of her home school basketball team friends who came was so thoughtful - especially since she didn't even play this year. I was thankful for the warm weather so that we could wheel my mother in law down from and back the nursing home so she could participate too. Thankfully the nursing home is only 6 blocks away:)
Probably the most touching part of the party for me were the 5 women who sacrificed their Saturday to cheerfully, thoughtfully, competently, and lovingly serve our family by doing the decorations and the food. I actually spent quite a bit of time that night thinking over why it touched me so much. I realized that in my life I have not had people who came around me and sacrificially served me. I am more used to people looking for excuses not to be involved, not caring about what I care about, making me feel guilty for asking for help, or making it clear that it is an obligation that they would rather not be a part of. Thus, I have such a hard time asking for help and tend to try to be an island unto myself (which I am being forced off of with current life situations). I was, and our family was totally blessed by these women. I am getting a bit sappy here so I will stop now:)
I did not let myself get too sentimental about this being Beautiful's graduation and that it means she is leaving soon. I figure that getting ready for the wedding and college will keep me occupied enough. However, come the wedding date I know I will be a total wreck. It is one thing to send her off to college when she will still depend on us and be home on weekends. It is another when we will be handing her off to permanently cleave to someone else... Sigh...I am getting emotional and need to stop this. I will miss her so incredibly much. But, we also could not have handed her over to a more worthy man who adores her. All will be well:)
Another good thing came out of the graduation party...Buddy, our hermit child, hates to have his picture taken...or be around crowds of people. When I made the big 4x3 foot collage of photos of Beautiful's life he remarked, "Huh, I guess I will have to start letting Mom take pictures of me or she won't have anything for my collage!" Yay! That means he is at least resigned to having some kind of celebration for his graduation lol!
Apraxia Sessions 11 and 12: He is growing!!!!
The great news first...We just measured JJ since he is finally GROWING...and he is at the 50th percentile for height!!!!!! We have always struggled to get him even on the growth chart, then above the 10th percentile. The highest he had gotten before was the 25th. AND he is on the 75th percentile for WEIGHT! Woo hoo!!! Yay for improved ability to chew and swallow!!! He has grown a full 2 inches since we started therapy!!!
Last session he was pretty active. She started some musical components as a way to help teach him to separate phonemes. Right now he is able to say words, but often times kind of puts the first sound (or his way of making the first sound) and the last sound all scrunched up together. So "bow and arrow" sounds something like "bear" (although he can't make a /r/ sound). We are working on getting him to say each sound.
We understand him better than before, but we still need context and to know what he typically calls things. There are words that he is able to say clearly like "good," "hi," hug," etc. There are other words that aren't necessarily clear but most people could make out if they heard him. Anything that involves more than 1 syllable is suspect though, and anything with an /f/ or /v/ or /s/ or /th/ sound.
It still takes him a long time to "retrieve" words. He has some words and phrases that he has those neural connections firing very well and rapid. However, when asking him novel information he still takes a long time to retrieve words and give answers. That is part of why in public he won't talk to people and tends to just hide his head and not respond (beyond "hi" or "good").
The SPL states that some research has been done suggesting the using a stand up scooter may be helpful, specifically standing with the right leg and pushing off with the left leg to increase that neural activity in the areas he needs it. We are looking to get a scooter now...it can't hurt:)
She also is looking for some research that she had seen that may indicate that kids with Apraxia may struggle with reduced REM during sleep. That may be a reason that he is struggling with sleep so much. We are waiting to see more of that research. The sleep issues are the only issues that we have not found a direct Apraxia cause yet, other than the difficulty waking in the mornings due to the motor cortex taking longer than other kids to "wake up" along with all of the sensory overload issues in the morning (unable to eat, nausea, car sickness, being really cold, etc).
This week's session my husband and I both attended. JJ was much more subdued. I know that when you guys see him you see him usually silent and shying away from people (unless you see him at church lately - his one social place that he feels safe and comfortable...perhaps too comfortable lol!). But at home he is a constant ball of energy, noise, movement, and speech (his way). We have not figured out why some weeks he is very energetic and some weeks calmer at therapy. I would think that once he feels safer there he would be more energetic every week, but who am I to try to figure out my kids lol! The SPL is also using music to help him anticipate and retrieve words (singing the same phrase repeatedly, or just changing up one word like the part of the body, etc).
JJ is a very intelligent child and his receptive language skills are very good. However, JJ is also a very stubborn child (and embarrasses easily) so getting him to be compliant to work on speech is difficult. He would rather joke around and be a clown, taking the focus off of what he knows is not "normal." That means that we work very hard to not push speech, encourage him when he tries rather than when it is said correctly, and try to make a game out of the teaching.
He still dysregulates about once every 1 - 2 days becoming physically uncontrollable. He is triggered less often than he used to be. It is a bit odd to watch the process. He triggers and his amygdala goes into alarm mode. There is then no "logic" that we can interject. He pushes everyone away and is violent. He goes into a verbal feedback loop during that time where he repeats himself for 10 - 45 minutes. Then it is like a switch gets flipped and he goes to sobbing and clinging and very sad. Last Sunday was an example of how hard it is to read him. Usually he is very difficult in Sunday School as we wake him to take him to Sunday School and he just wants to be held. He did OK in Sunday School this week though. But by the time we got to church I had to take him out 3 times. I don't think I have ever had to take him out 3 times (usually it is not at all). The final time we just walked home. As soon as we got home he asked for a bowl of soup...he was hungry! Since we are not used to him eating anything before 12 - 2 p.m. due to his nausea/sensory issues we weren't prepared. Asking him to eat is always a tricky situation. So, we just wait for him to lead or prepare food and leave it available for him to eat (he still insists to be fed most of the time). I think that the chewing/swallowing/fine motor skill of getting the spoon to his mouth is just too much at once for him. However, it seems that he is now getting hungry earlier in the day so we will have to figure out how to deal with that on Sunday mornings... However, a lot of his behavior is also clearly mirrored after Grace. We have been having a very, very terrible time with her lately and the frustration is only increased when JJ does what he sees her doing. However, that is for another post as my blood pressure raises every time I think about what we are dealing with with her and I don't have time for that today!!
On to a lighter note;)
Today he asked for cookies. I was delighted and said that we could make some together. He informed me that he did not want to make cookies...he wanted Oreos. Yes, this little tyke is in agreement that Oreos are America's #1 cookie lol! He doesn't like chocolate, he doesn't like sugar cookies, but Oreos are his favorite (right along with his big sister;)
JJ is also all boy. My other boys were not this..."boy." He loves to belch and fart. He thinks it is hilarious. This is a new issue for me. Lately his favorite thing to do is pee outside. Yes, if you drive by and see my child urinating on the lawn...I apologize. He has recently learned that one can relieve themselves (if male) while standing up and it has become a favorite past time. Sigh... As if the ninja moves, sword/light saber fighting, shooting, Super Smash Bros, and bow and arrows were not boy enough;)
Last session he was pretty active. She started some musical components as a way to help teach him to separate phonemes. Right now he is able to say words, but often times kind of puts the first sound (or his way of making the first sound) and the last sound all scrunched up together. So "bow and arrow" sounds something like "bear" (although he can't make a /r/ sound). We are working on getting him to say each sound.
We understand him better than before, but we still need context and to know what he typically calls things. There are words that he is able to say clearly like "good," "hi," hug," etc. There are other words that aren't necessarily clear but most people could make out if they heard him. Anything that involves more than 1 syllable is suspect though, and anything with an /f/ or /v/ or /s/ or /th/ sound.
It still takes him a long time to "retrieve" words. He has some words and phrases that he has those neural connections firing very well and rapid. However, when asking him novel information he still takes a long time to retrieve words and give answers. That is part of why in public he won't talk to people and tends to just hide his head and not respond (beyond "hi" or "good").
The SPL states that some research has been done suggesting the using a stand up scooter may be helpful, specifically standing with the right leg and pushing off with the left leg to increase that neural activity in the areas he needs it. We are looking to get a scooter now...it can't hurt:)
She also is looking for some research that she had seen that may indicate that kids with Apraxia may struggle with reduced REM during sleep. That may be a reason that he is struggling with sleep so much. We are waiting to see more of that research. The sleep issues are the only issues that we have not found a direct Apraxia cause yet, other than the difficulty waking in the mornings due to the motor cortex taking longer than other kids to "wake up" along with all of the sensory overload issues in the morning (unable to eat, nausea, car sickness, being really cold, etc).
This week's session my husband and I both attended. JJ was much more subdued. I know that when you guys see him you see him usually silent and shying away from people (unless you see him at church lately - his one social place that he feels safe and comfortable...perhaps too comfortable lol!). But at home he is a constant ball of energy, noise, movement, and speech (his way). We have not figured out why some weeks he is very energetic and some weeks calmer at therapy. I would think that once he feels safer there he would be more energetic every week, but who am I to try to figure out my kids lol! The SPL is also using music to help him anticipate and retrieve words (singing the same phrase repeatedly, or just changing up one word like the part of the body, etc).
JJ is a very intelligent child and his receptive language skills are very good. However, JJ is also a very stubborn child (and embarrasses easily) so getting him to be compliant to work on speech is difficult. He would rather joke around and be a clown, taking the focus off of what he knows is not "normal." That means that we work very hard to not push speech, encourage him when he tries rather than when it is said correctly, and try to make a game out of the teaching.
He still dysregulates about once every 1 - 2 days becoming physically uncontrollable. He is triggered less often than he used to be. It is a bit odd to watch the process. He triggers and his amygdala goes into alarm mode. There is then no "logic" that we can interject. He pushes everyone away and is violent. He goes into a verbal feedback loop during that time where he repeats himself for 10 - 45 minutes. Then it is like a switch gets flipped and he goes to sobbing and clinging and very sad. Last Sunday was an example of how hard it is to read him. Usually he is very difficult in Sunday School as we wake him to take him to Sunday School and he just wants to be held. He did OK in Sunday School this week though. But by the time we got to church I had to take him out 3 times. I don't think I have ever had to take him out 3 times (usually it is not at all). The final time we just walked home. As soon as we got home he asked for a bowl of soup...he was hungry! Since we are not used to him eating anything before 12 - 2 p.m. due to his nausea/sensory issues we weren't prepared. Asking him to eat is always a tricky situation. So, we just wait for him to lead or prepare food and leave it available for him to eat (he still insists to be fed most of the time). I think that the chewing/swallowing/fine motor skill of getting the spoon to his mouth is just too much at once for him. However, it seems that he is now getting hungry earlier in the day so we will have to figure out how to deal with that on Sunday mornings... However, a lot of his behavior is also clearly mirrored after Grace. We have been having a very, very terrible time with her lately and the frustration is only increased when JJ does what he sees her doing. However, that is for another post as my blood pressure raises every time I think about what we are dealing with with her and I don't have time for that today!!
On to a lighter note;)
Today he asked for cookies. I was delighted and said that we could make some together. He informed me that he did not want to make cookies...he wanted Oreos. Yes, this little tyke is in agreement that Oreos are America's #1 cookie lol! He doesn't like chocolate, he doesn't like sugar cookies, but Oreos are his favorite (right along with his big sister;)
JJ is also all boy. My other boys were not this..."boy." He loves to belch and fart. He thinks it is hilarious. This is a new issue for me. Lately his favorite thing to do is pee outside. Yes, if you drive by and see my child urinating on the lawn...I apologize. He has recently learned that one can relieve themselves (if male) while standing up and it has become a favorite past time. Sigh... As if the ninja moves, sword/light saber fighting, shooting, Super Smash Bros, and bow and arrows were not boy enough;)
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