Thursday, August 27, 2015

Confused about ABA therapy

When the child psychologist comes over to see Andy once a month, he tells me over and over that Andy is developmentally like an infant. He feels that Andy is like a 3-6 month old infant. Therefore, he feels that I should do things with Andy on an infant level. He does not feel that Andy can grasp advanced communication skills, or even self-feeding. He tells me that you wouldn't expect a 3-month old infant to feed themselves, or communicate with you using picture cards.

Andy at Disney World
I am confused whether to keep Andy in ABA therapy during the school year. He will be at school for five hours, and then I will take him to ABA therapy right after for another 2.5 hours. My husband and I already think this will be too much for him. I am going to start out with three days a week. The autism center would like him there after all five school days.

I am confused and torn, between what the child psychologist tells me, and what doctors tell me to do. I do feel that this therapy could be beneficial for Andy, however, I don't know if he is developmentally ready for it. The child psychologist would like me to simply work on getting Andy's attention, and keeping it for half a minute and build up to several minutes.

Once I can get his attention, and keep him from easy distractions, then the learning can begin. He feels that learning can't take place just yet, because Andy's attention span is so small. The ABA therapy center is trying to get Andy to pay attention and do things for hours. They want to help him to communicate with me by having him hand me picture cards.

This is a good idea in theory, but Andy just isn't there yet. His stamina is also limited. He will already be worn out when I pick him up from school, and will probably need a break/rest. I will be dropping him off at therapy three days a week and this may be too much. I will have to see how it goes, and make decisions using my gut feeling about everything.

Scheduling fun for myself

I scheduled several concerts this summer as a way to take a break from the stresses of parenting. I got to go to see Kid Rock in concert at DTE. He put on a great two-hour show, and Foreigner played before him for an hour. I had a lot of fun with friends and family. I also had a respite worker with Andy the next day to help work with him as I had gotten very little sleep. My husband stayed with Andy while I was at the concert. Kid Rock did not disappoint, and he brought it night after night. I would recommend that anyone see him if they haven't before. People that have seen him in the past make sure to make it back again and again. I was able to get good pictures with my camera.

Monday, August 17, 2015

Getting respite care finally

We finally have a respite worker coming to our house.  Respite care means that someone comes to watch your child to give you a break. Sometimes I stay here for a bit to get things done, and then I go out to run errands with my daughter. The worker is not allowed to watch any other children. We tried getting a worker to help us about a year ago, but there wasn't anyone available near our township. She is employed through a county program for special needs kids and comes here three times a week for four hours. The most she can stay per day is four hours, which is plenty of time for me to get things done, or have time with my daughter. We are grateful things have worked out for her to be here and help us. 

Wednesday, July 22, 2015

Andy's surgery went well

Andy did great with his surgery. The hospital did not put his IV in until he has already sleeping with a gas mask. He was also given an oral medication before that to get sleepy. He didn't feel any pain before the procedure, which was great! They were able to put pads on the sides of the hospital bed so that Andy wouldn't wiggle through the bars. Once he was starting to wake up, we were able to go back with him, which helped end our worrying. He has about a 3 cm long incision now, and we will confirm in a few days that it is benign.

Monday, July 20, 2015

Surgery day tomorrow

Andy is going under anesthesia tomorrow to remove a suspicious mole. It is most likely a benign cyst, but it must be removed to be certain. The mole may also be irritating him, so it seems best to have it removed. I am feeling a bit anxious tonight about it, but I think it will all go really well. 

Tuesday, June 23, 2015

Having a relaxing summer

Now that it is summer, we have been getting outside more. Andy enjoys sitting on the bench swing and going for rides in the wagon. I put a table across it, so he can play his toy piano. Lately, we are trying to just enjoy Andy in the moment, and not worry about what might happen in the future. He is a very happy kid, most of the time, and the crying episodes don't happen as much. It is nice not to be angry or sad about how Andy is, and just try to live our lives not dwelling on his condition. Both of us have felt far less stress in the last few weeks, and we are both a little relieved. We've both changed our thinking, and are coming to a better place of acceptance with Andy. It has made a world of difference. There are still days where we are sad and cry about it, but they are rare now. I am hoping I can stay on this nice path. I think Andy being in school a lot more this year has helped, and his recent ABA therapy visits. 

Friday, June 5, 2015

Extended school year denied

I had a meeting with Andy's teacher and therapists. I was asking if Andy was eligible to have an extended year, because he would get one if he was in a severely impaired program. They all felt he was meeting his goals and doesn't show regression during the two week breaks. I feel even with their data, he still would benefit from a longer school year due to his severity. For now, they will allow him to go to school through June, which is what they normally offer. He will attend therapy that we pay for in the summer. However, I feel it should be offered to him through school, but for now the answer is no.

Wednesday, May 13, 2015

Child Psychologist visit at our house

I spoke quite a bit with a child psychologist today. He interviewed me for about 45 minutes about what Andy can and cannot do. He asked me about the head banging behaviors, and face scratching that Andy does. He asked me about any health issues.

Andy loves swinging
The psychologist wanted to know what the physical therapist is doing with Andy, which for now is taking steps. He wanted to know what the occupational therapist is doing with Andy, which for now is hand-over-hand feeding and putting objects into containers. The psychologist suggested that we need to take a few steps back.

He says that Andy is operating at a 0-3 month level. However, I'd like to interject that he claps his hands and drinks water out of a straw cup, so there are some things he does that are in the nine month range. Nonetheless, Andy is still very infant-like. The psychologist suggested that because Andy is at such a low-level of infancy stage that we need to treat him more like a baby for now. He feels that he is nowhere near ready to feed himself or even put objects into containers, so that is why he isn't doing it. He'd like me to try to feed his sensory needs right now, which he feels will help with his meltdowns and frustrations.

He says I can do this by singing more to Andy in rhythmic ways. He says I should rock him more, swing him, and bounce him on my knee. He says I should swaddle him, and just try to get eye contact and smiling out of him. He says anything we would do to calm a 3-month old baby, and try to make a 3-month old baby happy. Shushing, and cuddling, and going for walks to calm him, and entertain him. This is what Andy needs right now, lots of sensory input. He also talked about compression and kind of laying him down to work his legs back and forth.

The psychologist felt that right now the most important thing to get out of Andy is eye contact and "shared attention" with each other. He says that if Andy can't pay attention, then learning will be extremely hindered. Suggestions for now are, bounce Andy on my knee and let him enjoy it,  then stop. When Andy looks at me and keeps eye contact, I can then count to three while still looking at him, and then start again. Whenever I stop, the hope is that Andy will look at me and use eye gaze to ask for more. Then I'm looking back at him and saying "okay, you want more? One... two.. three!", and we start bouncing again.

I did this just this evening and Andy loved it. He laughed so much with just me bouncing him on my knee. He really looked at me too when I stopped. It was like he was saying, "hey, let's continue this". He loved it so much, it made me feel bad that I hadn't been doing this before. All the motion is something that Andy doesn't usually get, because he can only drag himself around on the floor a small amount. This is supposed to feed his senses and help him to focus and cut down on the negative behaviors.

It makes sense to just try and get us sharing happy and fun moments together, instead of him just playing off on his own and not interacting with anyone. This is going to help build our bond, and give us moments of interaction. I am looking forward to playing out his suggestions. It was so helpful having him over to understand more of what Andy's needs and desires are, and how we can meet them.

Friday, May 8, 2015

Andy's been busy!

Andy at physical therapy
Andy is now in school for longer days twice a week, and he is receiving therapy after school on the shorter days two to three times a week. He's been very busy, and getting worn out, but in a good way. He will sometimes nap when he gets home, and other times he just becomes cranky around dinner time. I try to get him to bed early on some of those nights, but he isn't always willing to go to sleep.

The ABA therapy seems to be going well. He seems to be enjoying his time there. He isn't crying when I pick him up. They are trying to work on getting his attention, by having him track moving objects that light up and make noise like a toy phone. They are also trying to help him practice his pincher grasp and getting him to pick up forks or spoons and put them into a container. This will help lead him to self-feeding skills. Just grasping anything and holding it, then putting it back down is a challenge for him. He will often just drop things, but we instead want him to have a controlled release of the object. It is hard for me to work on these same things with him at home, because he often becomes very frustrated with the tasks. He will then start having a meltdown. I guess I need to find out what they do to combat meltdowns at the center.

My house is cleaned and organized now that I have had more time without Andy. I think he misses me, and shows it by cuddling up to me more when I'm holding him.  I think he's been crying a bit less too.

Andy listening to music to stay happy on a long car ride
I got to go to lunch with my husband today, which was awesome, while Andy was at therapy. I brought home the leftovers for Andy to eat once I brought him home. It was nice to see how much Andy was enjoying the food, and he kept showing me he wanted more by extending his hand towards the food. He then said a word so clearly, he said "yum", and it was so cute. I love hearing him say words, which is so rare. I always acknowledge that I just heard him say a word, and let him know I was happy to hear it. I know it is so tough for him to get any kind of words out. He doesn't ever repeat them.

It also seemed he tried to say "kitty", when I was having him take steps down the hall yesterday, and the cat appeared in front of us. I told him, "Wow, you said kitty! Yes, there's the kitty!". I hope that's what he was saying. I know for sure he said "yum", because I heard it loud and clear, and he was loving the food too. It is so awesome to hear Andy saying Anything, and makes me dream of the day that I will be having a conversation with him.

Monday, May 4, 2015

Working with my son's school towards positive changes

I asked my son's teacher several times throughout the school year if I could lengthen his school day by an hour or two. I was told no every time I asked. I was told that he could only be picked up at noon, or 4:00, and that was it. No other options were available.

Recently, it seems when Andy comes home, he gets really mad and upset. Almost like he wanted to stay at school a bit longer, and wasn't ready to come home. I always felt that a half day was too short, and a full day was way to long for Andy. I also felt that picking him up around 2:00 might work out better, because he has had therapy until 2:30 in the past.

I put in writing my concerns to the special education director. They had a meeting with me and told me right away that we could absolutely lengthen Andy's day. They also let me know that they had no idea why the teacher would have said no to this. So all in all, a positive outcome was had, and Andy is now having longer school days a few times a week. The other days, I pick him up at the regular half day, and then take him to Applied Behavioral Analysis therapy (ABA).

Andy seems to be doing well at the therapy and school. He is happy there, and I am getting a good report. Some of the days, he crashes and burns when he gets home. He refuses to take a nap, even though he needs one, and I can tell he is very tired.  Overall, he is responding well to all the new additional hours.

I have been working so hard around the house getting things done now that Andy is out of the house for several extra hours each week. I've been on a cleaning and decluttering frenzy, and my house looks great. Andy seems to be benefitting from extra hours and is happy to be at school more, so I am very happy to see this positive change.