Today, well, actually the past several months (or even years) have been extra tough for our family. We are getting hit from every possible direction with tough decisions that need to be made. Work decisions, financial decisions, education decisions, friendship decisions, activity decisions, ministry decisions, extended family decisions, health decisions, caring for parents decisions, and having special needs kids decisions. It seems like right now major decisions are needing to be made in every one of these areas (and more) and my head is swimming with a million questions of what the "right" thing is to do on too many fronts for me to keep straight. We have had the rug pulled out from under our feet several times in the past 6 weeks in particularly making us have to stop what we thought was forward progress, rethink, and seek God's wisdom for what direction to move forward. Who to trust? What source to trust? What happens when people you thought you could trust are found to be untrustworthy? With Grace alone we have sooooo many issues/directions that we have to be intervening with that it makes it very hard to discern where to place efforts. Each of the kids have such unique needs and I am feeling inept at getting them prepared for independent living and serving God someday...especially as our oldest is racing toward that stage of life...
I feel kind of like a juggler that is juggling at least 500 balls that I can label and they are all hitting me in the head. Feeling this overwhelmed is making me a little philosophical...what if I just had one really, really huge ball to deal with, like a terminal disease or a child dying? Would that be better? No way! I keep telling myself "put one foot in front of the other." "Just keep swimming" (while I really dislike Ellen D. I do love the idea (and the song) of "just keep swimming;). "This too shall pass." "I can do all things through Christ who strengthens me." "Nothing is impossible with God." "Consider it all joy, my brothers, when you face trials of many kinds for the testing of your faith develops perseverance. Perseverance must finish its work in you that you may be mature and complete, not lacking in anything." and "Blessed be the man who perseveres under trial for when he has stood the test he will receive the crown of life that God has promised to those who love Him." I am focusing on the two priorities that Jesus set 1) Love the Lord your God with all of your heart, soul, mind, and strength (and teach the kids to do the same), and 2) love your neighbor as yourself. Right now I am having to pull in and consider my "neighbor" my children and keep hunkered down. Mostly I am focusing on the character of God, keeping Him my audience of One, the shortness of this life, and that this is not my home.
What I try to do when overwhelmed is step back and see the big picture. Things are always worse when they are in a microscope. So, I have had some things today that I am choosing to be thankful for and realizing that no decisions need to be made today (including my impulsive urge to fly to Tahiti lol!)
Some things that made me laugh today:
When JJ woke up this morning we heard for 30 minutes, "where's Daddy?" JJ loves his Daddy so much and we are so blessed to have a Daddy who is home so much for his kids!
JJ is starting to like food, and he calls all food either "pizza" or "apple." JJ brings me MUCH joy and laughter. He is a card!
Faith went to blow her nose today and sat on what she thought was the lid of the toilet to do it...but someone had not put the lid down... I felt sorry for laughing but it really was very funny!
Some things that I was thankful for today:
When I went through the science lesson with the kids today on scientific method..I think they got it!
Faith finished her 1st grade spelling! I am so excited for her diligence and love to learn:)
Superman is reading...really, really well!!! I thought for 2 years that he had dyslexia. I am SOO thankful that he does not and he is making progress. This is soo huge for us:)
Grace did well in occupational therapy today. She is now working on eating issues (as the messiest eater ever!) She gets to eat in front of a mirror to watch herself eating carefully:)
Buddy has passed 2 levels out of 3 in Myofunctional therapy! He also gets to eat in front of a mirror to make sure he is swallowing his food properly. We are a couple of months from being done!
Superman did not graduate out of PT today, but I am thankful for a therapist who is understanding his issues and beginning to see more of what we were telling her his issues are...since they are subtle.
Thankful that we could trust Beautiful to watch some of the kids today so my husband and I could go to PT/OT together so he can see why/what we are doing with the kids and help me with interventions.
I'm thankful for a husband who is willing to try to build some contraptions to help Grace more.
I am thankful for a house that is comfortable for us all (although I saw some pictures of a house recently and unfortunately had some covetousness about wanting to move to a nicer home - then I remembered who would be living there with me and said, "bad idea!!!")
I am thankful that my mother in law made it through her amputation surgery today only having to have 2 toes amputated when it was discussed during the past week about possibly having to amputate up to below her knee. I am thankful that my husband is a man who wants to love and honor his mother by being there and supporting her through all of this. That means that he is a man who will never leave my side either:)
I am thankful for a friend to who called to go for a walk just to get to talk:)
I am thankful for the Body of Christ, some of whom provided us with a delicious meal tonight...just because they thought we could use it today:)
I know we are not called to "easy." We are not even called to "comfortable." I am warring against my flesh and need to keep reminding myself that no matter how many decisions we have to get made about things, our Father already knows all of the answers and all of the outcomes. I so much want to be a Faithful Servant with all that He has given to me, but days like today make me feel like no matter what I do it doesn't matter. You know what? That is true and I should find peace in that!!!
Wednesday, September 26, 2012
Sunday, September 23, 2012
JJ Update: He is doing great!
Throughout JJ's life we have had 3 primary goals:
1) get him to breath normally
2) get him to eat and gain weight
3) get him to sleep better
Well...
Breathing: why is he better? Remember back when we went to Mazatlan, Mexico in Feb 2012? We found out that he breathed perfectly. We came home, bought a very expensive air purifier, and found that it improved his breathing as long as he did not leave the house:) Last year we were unable to take him outside at all - if we did he needed a nebulizer treatment. This year...not a single nebulizer treatment! Remember when we did that funky and weird allergy intervention weird thing? Well, that seems to be the only intervention that is consistently different (the air purifier helps inside but would not account for him being able to be outside). We wondered if because we are in such a drought if it was just the absence of molds from wetness. However, when we went to MN, which has had plenty of rain and wetness this year and it rained while we were there, he did not have any problems at all. In Aug/Sept when my husband and oldest son started having some fall allergy issues, JJ did not! Faith also had these treatments. She also has not needed any nebulizer treatments although she is having some congestion this fall.
Eating/Drinking:
JJ has made it to 28 lbs, which is the 50th percentile! He has never been above the 10th percentile so we are thrilled! The first 18 months of his life he gained weight one month and lost weight the next. Makes for slow progress. In the past 6 months he only lost weight once! He is also in the 25th percentile for height:) His mom is 5'5" and his dad is 5'10" so we don't expect him to be a super tall guy...but that is the same height of my husband and I and our oldest is pushing 6 foot and her brother is close behind lol!
JJ is a very, very picky eater. We have not really cared what he eats as long has he eats. JJ has considered a "meal" to be 2 - 3 bites of a food. Even at that, he has required that my husband or I eat the food first (kind of like a food tester for a king lol!). He has preferred to sit on our lap and just sample a bit of what we are eating (thankfully in the past 2 weeks he is now insisting on being in his highchair- yay!!) He likes foods like rice, raw tomatoes, cranberry juice, sliced ham/turkey, and grape nuts. He is an odd duck. He does NOT like breads. It is very funny that now that he is starting to talk, when he is hungry his word for "food" is "pizza." As that food is a family favorite (although not for JJ) he is used to hearing the word so uses it for all food lol! Some people may think that we are not doing a good job of requiring him to eat/try all foods, etc. Well, after almost two years of this kid not gaining weight we were willing to have a picky eater...if just to have an eater!
Another oddity of JJ is that he really does not like sippy cups...at all. He wants a bottle and it must be of milk. It has been pretty recent that he will drink anything other than milk, and that is only cranberry juice. Even at that he drinks maybe an once or two. We keep his bottles filled in the fridge so he can just go and get them at will (just like another kid having their sippy cup always available). He has learned that he drinks two bottles at a shot now so will just grab two from the fridge and go double fisted:) He will drink from a straw so we are trying to transition with that. This is a new problem for me as my babies all went from nursing to the cup at 11 months with no bottle. Even Grace, who was exclusively bottle fed obviously, gave up her bottle very easily. We are learning that even though he is the 6th kid, there are many, many firsts!! Thinking of weaning him from the bottle makes me worry that he will lose weight again so we are just holding off... We spend $100 a month on raw milk for our family and much of it goes to JJ. It must be working as he is gaining weight and he wets through his diaper almost every night - we are SO HAPPY about this!!
Sleeping:
In the past 2 months JJ has been sleeping better with most nights him sleeping most of the night. In the past 3 weeks this has improved to him sleeping all the way through the night 6 of 7 nights a week! He has also never been a napper - he may fall asleep in our arms at some point in the day (usually way to late in the day)...or not. Most days he never napped. He fell asleep sometime around midnight and woke late morning (after being up with us several times in the night for comfort). In the past 3 weeks he consistently goes to sleep 2:30ish and takes a 2 - 3 hour nap. He still doesn't go to sleep until midnight but wakes between 8:30 and 9:30 a.m. What has not changed is that we still have to put him to sleep. We lay on the bed with him and he drinks his bottle, hangs onto us, and falls asleep. Oddly enough he will fall asleep within 15 minutes for his nap but at bedtime it usually takes an hour...
Embarrassing Quirk:
Probably JJ's most embarrassing quirk is his attachment object. I think I have made it pretty clear that he prefers to be held, cuddled, not put down, not be left alone, and always in the company of my husband or I. Well, other than his pacifier he has never attached to an "object" other than us. In the TBRI training this was a key part of attachment and bonding. I nursed JJ until he was 16 months old. He was not excited about being weaned. Before that, he would hang onto my shirt collar when nursing or falling asleep. Once weaned he decided that did not give enough guarantee of my closeness so went for my...bra strap. Yes, the child prefers my shoulder bra strap over a blanket, stuffed animal, or any other object. There are times where I can distract him, but he continues to be a very fearful child so when in public, and thus afraid, he goes for the attachment object...Yes, the embarrassing things we as parents put up with to give our children security lol! I am currently trying to put a rubber hair band around my shoulder outside of my shirt to get him to hang onto that. He is not very interested. So, I continue to put him to sleep at bedtime and nap time (he will let my husband put him down for nap but not bedtime) as I am the one with the bra strap. Gotta feel loved lol! Again, at this point we are just so happy that he is consistently going to sleep that we are not going to rock any boat. He has no ability to self-sooth at all. This will be something we will need to get figured out.
Going to others:
Another huge praise has been his willingness, well, not willingness but tolerance is probably a better word, for going to nursery and Sunday School. I am so thankful for his Sunday School teachers that told me I could just leave and let him cry. He remains pretty stand offish but at least he is going and not screaming the entire time:) Nursery is a bit different in that there are different caregivers every week. We had Faith stay in there with him 4 times. Now he goes, unhappily, but goes. Today when I handed him over to the caregiver (a sweet friend of mine) he clung to her and put his head on her shoulder. I was thrilled he was accepting comfort from someone else! There is also a man at church who has taken JJ under his wing and JJ will go to at times. Good things!
Talking:
Finally, JJ is beginning to talk. He doesn't have a large expressive vocabulary to use words to name things. Yet, he is able to get his point across well to us between sign language and words. He mimics almost everything that we say. He will point to things and get them if we ask - showing he is doing well with receptive language.
JJ is, after 25 months, finally starting to make consistent gains. He is an absolutely adorable child and I adore him. His smiles, his laughter, and his boyish sillyness keep our family in stitches. We have a few rough edges to work out like him throwing things, "talking" over us when we are trying to talk (essentially yelling "words" while we are talking to be sure he is the center of attention, and hitting when angry. Oh, and thinking of potty training at some time...in the future...distant future lol!
Saturday, September 15, 2012
Occupational Therapy Update:)
I am pleasantly surprised that the occupational therapy interventions with Grace are producing pleasing results. In the previous post (the one with all of the bunny trails that is really, really long and no one probably read to the end) I wrote about some of the specific interventions we are to be using with Grace. This post will be about what we are seeing.
ADHD and sensory issues are such multi faceted issues. Even though I had read about and had training regarding ADHD I still did not know enough about it until I got to deal with it day in and day out. In 7 days I get to attend a day long training for Psychologists by the world renowned expert on ADHD. I am curious how it will go:)
For so long the primary issue with Grace was hyperactivity. For years we just tried to calm her down enough that she would not be hurting herself or others. We tried all kinds of interventions and finally used Ritalin. We did get effects from other interventions but the Ritalin finally slowed her down to manageable levels:) We did an increase one time, but with dietary and nutritional changes we were able to reduce it again.
At that time, once she was a bit slowed down, we noticed how bad the concentration problems were. She was in Kindergarten and her lack of ability to attend to the lessons was causing her to really lag behind. We were happy to keep her from hurting herself, others, or wrecking something - forget about math facts and reading! In the spring we switched her to a different medication, Vyvanse. That medication, administered below the recommended start dose, helped to control both her hyperactivity and poor concentration. She made significant strides in school over the summer.
The 3rd issue we have with her is impulsivity. She never stops talking, loudly, without listening for answers. She is seeing something interesting and running for it without regard to it potentially being dangerous or belonging to someone else. She is ever seeking to pin blame on others and not be found at fault herself. We found that this also improved with the medication change. Today we tried a no-med day to see how much of the improvement is from the meds and how much from the occupational therapy (OT). The main problem from the day was impulsivity again. Constant talking and inability to respect others' boundaries led to many sibling conflicts that we have enjoyed not dealing with as frequently (as in, a good day is perhaps 1 - 2 conflicts an hour).
Those issues are primarily dealt with by the medication. So, you ask, what else is there that the OT could even help? The mornings and bedtime have been the worst times for Grace. She wakes up at the crack of dawn, wakes up her sister who needs more sleep, wakes up the house, and essentially bounces around like Tigger creating chaos before people can even open their eyes. Bedtime usually involves at least 30 minutes of out of control screaming, if not longer, that means that no one else can be going to bed. She doesn't stay in her room (much less her bed) and is verbally and physically out of control. 90% of the time we have to remove her sister and have her sleep in her brother's room (in JJ's bed, which means that JJ is still in out bedroom). Her waking and going to sleep have come to be the most dreaded part of my day.
Grace potty trained very quickly at 21 months (I am glad that was easy lol!) She loves to go to the bathroom...and wash her hands. We only use bar soap (which is healthier anyway:) as she will go through a pump bottle in a day. She is forever playing in dirt, sand, water, anything messy. She spins and spins and spins - preferably upside down. She sits upside down during meals - hitting her head on the table for added drama when told to sit up. Superman has to be placed between Grace and Faith at the table and in the van as he is able to defend Faith better. She picks the drywall mud off of the wall. She is the messiest eater alive as she plays in her food rather than eat it. When told no, well, we say it to her countless times a day but it is almost always a battle. She is smart and uses it to be sneaky. If she sees it, she wants it and she goes for it.
Occupational therapy has reduced most of these issues! She is sleeping at night without screaming! Faith actually gets to sleep in her own bed, and Grace is VERY CAREFUL about not waking her in the morning when she gets up. Just so you really get the effect, I said that Grace was CAREFUL! We have only had to removed Faith from the room 2x in 3 weeks and this was not due to screaming! Grace has always been very fearful of the dark (or, more realistically, she wants the closet light on so she can play with her toys since it takes her awhile to wind down and fall asleep). This has hindered Faith from falling asleep as well. Last week Grace announced to us that she wanted the closet light off and has done this successfully! She has a long history of nightmares, and has only had one in the past 3 weeks! Then, when she came to us she came QUIETLY so as not to wake JJ (it used to be that she would charge into our room numerous times during the night as loud as she could be - she now seems to understand quiet) and was quickly calmed and able to go back to her bed. It is quite amazing!
In my mind I am trying to categorize and conceptualize what is really going on with her. We have nutritional issues with digestion that we are still in the process of correcting. We have a ton of food allergies - that we are dealing with nutritionally and via diet. We have ADHD (hyperactivity, concentration, and impulsivity) that has been adequately controlled with medication at a minimal dose and very watchful eyes of my husband and I who try to ward off any "dangerous" triggers. And now the issues that I thought were part of ADHD that seem to be sensory processing issues are being addressed with the OT.
I am so thankful for being able to wake with the sun and not a child screaming or jostling me or slamming doors or running all over the house waking everyone else. I am SOOOOO thankful for bedtimes that do not include out of control screaming. I am so thankful that the girls are sleeping well in their room...and maybe we can have JJ in he and Superman's room...perhaps by the time he is 3? I am so thankful that there are fewer injuries to siblings from her impulsiveness. I am so thankful for calmer days where she is not nearly as impulsive spiraling out of control where the only intervention is to have her scream in her room until she exhausts herself before we can reengage her. Now she is better communicating to us and having a more quiet spirit. She really likes the interventions (like brushing, being wrapped tightly in a blanket and rolled on a big ball, etc) and will ask for them when she is feeling out of sorts. I dare say that life, at least as far as she is concerned is a bit calmer and..quieter! I know we are only 3 1/2 weeks into the interventions (messy eating issues are next!!!) and we have months and months ahead of us. But, we sure are enjoying what we are seeing so far:)
ADHD and sensory issues are such multi faceted issues. Even though I had read about and had training regarding ADHD I still did not know enough about it until I got to deal with it day in and day out. In 7 days I get to attend a day long training for Psychologists by the world renowned expert on ADHD. I am curious how it will go:)
For so long the primary issue with Grace was hyperactivity. For years we just tried to calm her down enough that she would not be hurting herself or others. We tried all kinds of interventions and finally used Ritalin. We did get effects from other interventions but the Ritalin finally slowed her down to manageable levels:) We did an increase one time, but with dietary and nutritional changes we were able to reduce it again.
At that time, once she was a bit slowed down, we noticed how bad the concentration problems were. She was in Kindergarten and her lack of ability to attend to the lessons was causing her to really lag behind. We were happy to keep her from hurting herself, others, or wrecking something - forget about math facts and reading! In the spring we switched her to a different medication, Vyvanse. That medication, administered below the recommended start dose, helped to control both her hyperactivity and poor concentration. She made significant strides in school over the summer.
The 3rd issue we have with her is impulsivity. She never stops talking, loudly, without listening for answers. She is seeing something interesting and running for it without regard to it potentially being dangerous or belonging to someone else. She is ever seeking to pin blame on others and not be found at fault herself. We found that this also improved with the medication change. Today we tried a no-med day to see how much of the improvement is from the meds and how much from the occupational therapy (OT). The main problem from the day was impulsivity again. Constant talking and inability to respect others' boundaries led to many sibling conflicts that we have enjoyed not dealing with as frequently (as in, a good day is perhaps 1 - 2 conflicts an hour).
Those issues are primarily dealt with by the medication. So, you ask, what else is there that the OT could even help? The mornings and bedtime have been the worst times for Grace. She wakes up at the crack of dawn, wakes up her sister who needs more sleep, wakes up the house, and essentially bounces around like Tigger creating chaos before people can even open their eyes. Bedtime usually involves at least 30 minutes of out of control screaming, if not longer, that means that no one else can be going to bed. She doesn't stay in her room (much less her bed) and is verbally and physically out of control. 90% of the time we have to remove her sister and have her sleep in her brother's room (in JJ's bed, which means that JJ is still in out bedroom). Her waking and going to sleep have come to be the most dreaded part of my day.
Grace potty trained very quickly at 21 months (I am glad that was easy lol!) She loves to go to the bathroom...and wash her hands. We only use bar soap (which is healthier anyway:) as she will go through a pump bottle in a day. She is forever playing in dirt, sand, water, anything messy. She spins and spins and spins - preferably upside down. She sits upside down during meals - hitting her head on the table for added drama when told to sit up. Superman has to be placed between Grace and Faith at the table and in the van as he is able to defend Faith better. She picks the drywall mud off of the wall. She is the messiest eater alive as she plays in her food rather than eat it. When told no, well, we say it to her countless times a day but it is almost always a battle. She is smart and uses it to be sneaky. If she sees it, she wants it and she goes for it.
Occupational therapy has reduced most of these issues! She is sleeping at night without screaming! Faith actually gets to sleep in her own bed, and Grace is VERY CAREFUL about not waking her in the morning when she gets up. Just so you really get the effect, I said that Grace was CAREFUL! We have only had to removed Faith from the room 2x in 3 weeks and this was not due to screaming! Grace has always been very fearful of the dark (or, more realistically, she wants the closet light on so she can play with her toys since it takes her awhile to wind down and fall asleep). This has hindered Faith from falling asleep as well. Last week Grace announced to us that she wanted the closet light off and has done this successfully! She has a long history of nightmares, and has only had one in the past 3 weeks! Then, when she came to us she came QUIETLY so as not to wake JJ (it used to be that she would charge into our room numerous times during the night as loud as she could be - she now seems to understand quiet) and was quickly calmed and able to go back to her bed. It is quite amazing!
In my mind I am trying to categorize and conceptualize what is really going on with her. We have nutritional issues with digestion that we are still in the process of correcting. We have a ton of food allergies - that we are dealing with nutritionally and via diet. We have ADHD (hyperactivity, concentration, and impulsivity) that has been adequately controlled with medication at a minimal dose and very watchful eyes of my husband and I who try to ward off any "dangerous" triggers. And now the issues that I thought were part of ADHD that seem to be sensory processing issues are being addressed with the OT.
I am so thankful for being able to wake with the sun and not a child screaming or jostling me or slamming doors or running all over the house waking everyone else. I am SOOOOO thankful for bedtimes that do not include out of control screaming. I am so thankful that the girls are sleeping well in their room...and maybe we can have JJ in he and Superman's room...perhaps by the time he is 3? I am so thankful that there are fewer injuries to siblings from her impulsiveness. I am so thankful for calmer days where she is not nearly as impulsive spiraling out of control where the only intervention is to have her scream in her room until she exhausts herself before we can reengage her. Now she is better communicating to us and having a more quiet spirit. She really likes the interventions (like brushing, being wrapped tightly in a blanket and rolled on a big ball, etc) and will ask for them when she is feeling out of sorts. I dare say that life, at least as far as she is concerned is a bit calmer and..quieter! I know we are only 3 1/2 weeks into the interventions (messy eating issues are next!!!) and we have months and months ahead of us. But, we sure are enjoying what we are seeing so far:)
Wednesday, September 5, 2012
Broken...
There is a point where a person is so broken they have no words. They can only sit and cry. There is a point where they have no plan, they can only cling to the love and perfect plan of the Father. There is a point where they isolate themselves and feel so alone they seek out only those tried and true friends. There is a point where they second guess every decision in their life and question what is even right any more.
So thankful for tried and true friends. So thankful for prayer of others. So thankful for Jesus who is never surprised, never walks away, never gives up, and never changes. So thankful for His power, sovereignty, perfect plan, and perfect timing to work out ALL things for the good of those who love Him. Clinging to His truth and trying to love as He loves. Reminding myself that with humility comes pruning.
Deeply reminded that we have no control. None. Not an ounce. Thankfully, God is good, all of the time. All of the time, God is good. And He has ALL of the control...
So thankful for tried and true friends. So thankful for prayer of others. So thankful for Jesus who is never surprised, never walks away, never gives up, and never changes. So thankful for His power, sovereignty, perfect plan, and perfect timing to work out ALL things for the good of those who love Him. Clinging to His truth and trying to love as He loves. Reminding myself that with humility comes pruning.
Deeply reminded that we have no control. None. Not an ounce. Thankfully, God is good, all of the time. All of the time, God is good. And He has ALL of the control...
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