Taking it Day by Day with Developmental Delays (and Autism)
My five year old son seems to be frozen in time as an infant. A recent chromosome SNP array shows that he has a chromosome deletion on chromosome 9q22.2, which contains two known genes. His MRI gave us a diagnosis of partial agenesis of the corpus callosum and microcephaly. He has severe global developmental delays,mental and physical impairments, hypotonia and has just been diagnosed with Autism. His disabilities have swallowed me whole, and we are trying to cope daily.
Andy has been pointing to communicate with me when it is time to eat. I set down his water cup, a salad, and his dinner plate. He will point to the item he wants, when it is time for him to take his next bite. He has been doing this consistently for a week now. It is so awesome to feel like he is understanding what I am asking him, and that we are communicating. I know that the summer in ABA therapy has helped this along, and I am very grateful. I've tried to catch it on video, but Andy gets camera shy.
Andy's first day of Kindergarten with his big sister
This is so awesome! Blue Cross Blue Shield of Michigan has decided to reject all of my son's Applied Behavioral Analysis claims for Autism therapy. I spoke with one of their representatives before he got any therapy done. I noted the time, date and duration of the call. I gave the rep each CPT code that the Autism Center would be using. I was told each would be covered at 90 percent, and using the Autism diagnosis code of 299.00 was fine.
When the center called BCBS of MI they asked if an authorization was required before going ahead with therapy. They were told "no auth is required, just start billing". So, based on my call to them, and their call, we started therapy. The center didn't bill until about a month out. I checked to see if there were any pending claims, every week. I finally could see some, when he was already at week 6.
How much does ABA therapy cost? This is what I kept asking the center. They would tell me, it's different for everyone, and did not want to give me a dollar amount. Well, ABA therapy costs around $1,000-$1800 a week. Yes, a week. They billed per fifteen minute units, and it is pricey. My son was there for 5 hours a day, 5 days a week.
It did benefit him, as he is pointing to what he wants now. I offer him two choices of what to eat, and he points to what he wants for each bite. ABA therapy has helped him to communicate with me. He was worked with one-on-one for the whole day, and now he is starting to show signs that he did learn some communication skills from them.
It is a bummer that Blue Cross Blue Shield is doing this to us. We have a PPO plan. It is super expensive too. They usually cover everything. A rep called me and told me, "although the president passed something to make insurance companies pay for Autism claims, we don't fall under the state mandate". So, my son's claims have been rightfully rejected.
It is coming down to them finding the recording of me talking to the representative on the phone. They are supposed to listen to it, and see what she told me. Hopefully, they will realize they should pay. We wouldn't have gone through with the therapy had we known they wouldn't pay.
The staff at the Autism Center says that Andy cried a lot less this week. However, he continues to throw a fit whenever we pull up to the center. They have been trying to talk me into getting him to stay there for the entire school year, and pulling him from his public school program.
I have thought about this for a long while, and have decided to not do this. He is going to go to school in the fall as planned. I don't feel comfortable completely removing him from his school and putting him only at the Autism Center. I think he is going to love school so much, and really enjoy it. I just can't imagine him not going to school with his therapists and friends right now. Everyone has done so much in preparation for him coming to the school. I really wouldn't want to have to tell the staff there that I'm pulling him out for a year or two.
Then later, he'd end up there when the Autism program is done, which they told me insurance stops paying for 25 hours a week at age 7. Then people typically put their kids into first grade. I'm not sure if any services are paid after that. This is what staff told me, when they were urging me to keep Andy in for the next year. It might seem like, okay, now he's ready to come to school. When in fact, he would still be really far behind, and less comfortable with everyone.
I am happy with my decision to go ahead and put him into Kindergarten. It just feels right to me.
Andy's chromosome SNP array showed that he is missing a small piece of DNA on chromosome 9 (formally designated as deletion 9q22.2, 600kb, containing two known genes). This finding may be the cause of Andrew's delays, and physical and mental impairments. It could also be a polymorphism, which is a chromosomal change that is often family specific and doesn't cause a disease. My husband and I will have to give blood samples to see if we are also missing these genes. If we are not missing them, then it may be labelled as the main cause of Andy's problems.
Andy has a lot of trouble learning, and remains very infantile. When I search for this deletion online, I find other children who are also impaired like Andy. Some of them took a long time to learn how to walk, but eventually did. Some of them still do not speak in a way that anyone can understand. The doctor assured me that each case is going to be different for anyone with this deletion, and that we cannot use the computer to know for sure what Andy's outcomes will be. Sigh.
I drive Andy to therapy each morning, and he is happy in the van. As soon as I pull into the driveway of the therapy building, and park the car, Andy starts to have a huge temper tantrum. Every day he does this. It tells me that he isn't thrilled about going to this place.
They tell me that he usually calms down ten minutes after getting inside. I ask them to keep me informed if they can't console him, if he isn't eating, or if he's so sleepy, he can't stay awake. They don't usually call or text me, even though I ask them to. I usually have to bug them, by texting, asking for an update on Andy's behavior.
Sometimes, I randomly show up thirty minutes to an hour early to take him home. Sometimes, I find him there happy, and sometimes he is very sleepy. I still feel that five hours is too long of a day for him, and that I will be cutting down his kindergarten day to four hours. At least, for part of the school year. I should be able to tell when he is no longer napping for me, that maybe he could withstand a longer day.
For now, he is completely worn out and ready for a nap, when I get him home from therapy. He is also quite angry. He often fusses most of the way home, and is sometimes outraged and in full tantrum as we pull into our neighborhood. I lay him right in his bed after we walk in. He usually sleeps for an hour, sometimes two, if my daughter doesn't wake him up by being too loud in the house. She will soon be in school again, and this shouldn't be an issue at that time.
I just don't know what to think of this therapy. I can see Andy trying to point a little bit more, however, it is hard to tell whether it is helping him or not. I do feel that it is positive for him to be receiving this therapy, but I don't feel that I would like to fully replace his kindergarten experience with the ABA therapy. I would like to try to mix the two together, but I don't know how that will work just yet.
I'd like Andy to be in a solid routine of going to school every morning, and possibly going to ABA therapy a couple afternoons a week. Only after he's come home for a nap, and has had a snack. I'll have to run that by them, and see if that will be an option.
Andy has been going to therapy for five hours a day, for five weeks now. I am still feeling that this is too long of a day for him. If I arrive 30 minutes early, I find that he is falling asleep. I feel that if he is too tired to work, we should just call it a day. They feel that he should tough it out. I don't see the point.
I expressed wanting to pick him up an hour early from now on, but it was just blown off. I think I am going to start doing this at least twice a week. When I see him putting his head down on the table, I think it would be fine to just let him go home.
They are working on trying to get Andy to point at what he wants, and to put his hand on a toy car and move it back and forth per their request. They say, "do this", and show him their hand moving the car back and forth. Then they pause to let him do it. If he doesn't, they then prompt him by putting their hand on his hand and having him touch the car.
When Andy's kindergarten starts, I don't think I am going to have him try a full day there. I think this is too long of a stretch for him. I think when Andy gets all the stimulation, and physical demands, he gets very worn out. Then I am left with an overtired and extremely cranky kid. Either that, or they should let him lay down for a nap when he shows he's really tired. In kindergarten, they will let him nap. At therapy, I understand that they don't want him sleeping, so I'd rather them call me to come get him.
All this week, Andy gets so worn out at therapy after about three hours. He is enjoying craft time around the other kids, and also song time. However, they keep him in the back on his own when they feel the noise levels are getting too overwhelming for him.
I think this is boring for him. I think he starts to fuss and whine because he wants to be around the action more. I have to bring this up at our next meeting. They have been meeting with me every other week, so that we can go back and forth about how Andy's doing there.
This week, they've been telling me it is hard to get Andy to eat anything. He usually just willingly eats all of his snacks and food, but for the last few days, he is showing them that he doesn't always want to eat. It isn't like him to pass up food. I think though, that they need to be trying to feed him near the other kids, and maybe they are. I have to look into this.
For today, I checked in with them after he had been there for two hours. I wanted to know if he had eaten a snack, and did he seem tired. They've mentioned to me that this week he was trying to put his head down a lot, and kept rubbing his eyes. He is so tired and worn out lately. I don't know if it is productive for him to be there.
I told them that if he refused to eat lunch, then I wanted to come pick him up early. I didn't want him to be there for five hours, and not have eaten much of anything. When this happens, he is a total wreck when I pick him up, and cries in a huge tantrum all the way home for 25 minutes.
I picked him up an hour early, it is Friday, and he is on week four of therapy. He had several days of not eating well at therapy only, but ate fine for me for dinner at home. Sure enough, an hour early, after four hours of therapy I pick him up. I take him to a fast food place and he eats like he's starving. I felt so bad. He enjoyed it so much, and kept saying "umm". It even sounded like he was trying to say "mine" to the burger.
We are going to discuss next week if we should cut down from five hours of therapy to four hours. He is just so worn out, I don't want him to stay there the whole time just for the sake of putting the hours in. I'm going to make suggestions, and am willing to see if they help. However, school will be starting soon, and I am going to want him to be among his peers again. I'm not sure how we will work in the ABA therapy and kindergarten. It is yet to be determined.
When I went to pick Andy up from therapy, he pointed at me when he saw me. I was so proud of him. It was nice for him to look up and recognize me and then point to me. It was like he was trying to tell the staff, "mom's here"! It was really great.
Then, I was feeding Andy his dinner and salad. When he was ready for his next bite, and I was taking too long, he took his finger and pointed to the salad. I told him, "Wow, good pointing! He just pointed to his salad!" It gave me a great feeling that he had just successfully communicated with me. He did it just once, and it really made me happy.
Week three has been rocky. Andy spent a lot of time crying at the center, but was also constipated. I informed them of this, and Andy was rough until he was all cleared up on Friday. They had me listen to some of his crying to try and help discern what he might be trying to communicate.
I emphasized that I often do not know, but I felt that he sounded tired. Andy has gotten back to taking daily naps right after he returns home. He has a lot of stimulation at the center and is asked to do several tasks that tire him.
I was told that it would be hard work to try and "undo" five years of Andy crying to communicate. However, I don't know that Andy is crying to get what he wants, or to communicate. It is just Andy. He cries when he's tired, angry and frustrated. It has never gotten him what he wants, because honestly, I don't EVER know what he wants. And I have honestly, never, gotten him to stop crying by giving him something-EVER. Because I don't know what he wants. I don't know what he wishes to have, and I've never felt that I have successfully remedied his crying.
So, I don't feel that his crying has ever been negatively reinforced in anyway-whatsoever. Though, I am being made to feel this way. As though, Andy is somehow manipulating me through his crying to get what he wants. This just simply is not true. He doesn't think like that. I don't even think he would be able to conjure up such a grand master plan.
I really wish I knew what he wanted, so I could just give it to him.
Andy is still getting used to the new routine of getting up in the morning and getting ready for therapy. I tell him that he is going to go play today. Sometimes, he cries all the way to the therapy building (25 minute drive). Other times, he's happy in the car.
Some days, after working with Andy, they tell me he had a good day and played well. Other days, they tell me he had tantrums throughout the day. Some days, he won't eat much there and can't easily be consoled. I told them to let me know of this in the future, as he might have a headache or gas issues, that could be solved by me bringing up some medicine.
It has been nice to have them working with him for several hours a day. I can tell that they are worn out when I pick him up. He is a lot of work, and can be quite exhausting, I know.