Monday, August 25, 2014

Week Seven of ABA therapy

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.

Thursday, August 21, 2014

My son's chromosome SNP array testing shows a deletion

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.

Thursday, August 14, 2014

Week Six of ABA therapy

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.

Saturday, August 9, 2014

Week Five of ABA therapy

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.

Friday, August 1, 2014

Week Four of ABA therapy

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.

Tuesday, July 29, 2014

Andy pointed at me today!

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.

Monday, July 28, 2014

Week three of ABA therapy

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.

Thursday, July 17, 2014

Week Two of ABA therapy

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.

Monday, July 7, 2014

Me and Gabby time

There has been such a huge relief that has come along with my son Andy being able to attend an ABA program several days a week. It has allowed my daughter and I to spend time together this summer. Previously, his preschool wasn't long enough to make lunch plans. I had to be home at noon to get him off his bus. Now, he is going to school a bit longer. So, we made plans to go eat lunch with my mom.

It was so nice, and non-stressful, that I could have cried. I didn't have to worry about Andy's constant squealing and screeching and all the loud noises he makes in restaurants that make people stare. You can also tell that they are wondering, 'why would they bring him here'? Well, we need to eat too, and I  occasionally deserve a break from cooking. You can't always get a babysitter when the mood strikes on the spur of the moment. There are just so many reasons why we bring him into a restaurant, and we always leave thinking, never again. Or at least until I'm feeling brave again.

But not today. I wasn't in a hurry, or frustrated with my son. I didn't want to rush the waiter to stop talking and get the order in, we just sat there with no worries. I wanted to cry because it was too good.

We can shop without Andy kicking and screaming in the cart, and actually try on clothing without trying to keep Andy calm. Luckily, my daughter enjoys shopping, especially if she is going to get something out of the deal. We got to step onto an escalator, which we never do, because I am always pushing Andy around. My daughter thought it was magical and so cool. She wanted to go up and down, and hold my hand getting on and off, because it was a little scary too. And so we did.

She checked out all the "fashion gowns", leftover prom dresses and picked out one for me to try on. She told me to please put it on, and then twirl around. So I did.

I am just so grateful, and am happy to get some time with my daughter.

Week one of ABA therapy

Andy has completed one full week of ABA therapy. He isn't crying upon entering the building any more. He has learned that it is a fun place, and that they will be playing with him there. He is receiving therapy five days a week. He has fun there, and only gets fussy at times.

On the fifth day of therapy, Andy was very worn out. He was having trouble keeping his eyes open, when I picked him up and then put his head down on his tray. He never sleeps in the car, but on this day, he slept all the way home.


I am supposed to attend a parent seminar on ABA techniques for parents, so I'll write about that after it is over. So far the center has been great, and Andy seems to be trying to communicate a bit more with us.