We've been working hard!

Andy is used to playing on the floor a lot, and having things brought to him. Lately, I am trying to have Andy stand more during play time. Either I will 

hold him in a standing position or he will stand in stander and play.

When we use the stander with a seat in it, he eventually sits down after about five minutes. So I have to keep pulling him back up to standing. After about 30 minutes I take him out of this. 

I used to brush his teeth in his bed, then bring him his cup of water for a drink. Now I have Andy step to the bathroom while I'm holding him, and he stands at the sink. He is motivated to do this because he loves getting his hands wet. While he is putting his hands in the running water, I am brushing his teeth, and he's standing with me behind him. I have to do this in case he falls or his legs buckle unexpectedly. 

I am slowly making standing a bigger part of his day, and his school is too. Now that I am in the habit of brushing Andy's teeth while he's standing at the sink, it is a normal thing that we do. I feel he is benefiting every day by standing more often than he ever has before.

I'm noticing more babbling and also more drooling and chewing on toys and bibs. I've ordered some chewy sew-on corners for his current terry cloth pullover bibs. I am told that the chewing on objects is totally developmentally appropriate for the infancy stage that he is in, and it could last a long time. The psychologist told me to give into it and let him chew all that he needs to. It's giving him oral sensory input, and it makes him happy.  

School is going well

Andy has been back in school now for almost two weeks. Things are going really well. Andy is able to stay at school for several hours. The staff tells me that he doesn't get too cranky, and eats his food really well.

Andy is happy to be at school, and squeals and claps when he sees his friends there. Andy doesn't always need a nap after school. Sometimes, I can see that he's very tired, so I lay him down. Other days he is full of energy, and wants to play with his toys when he gets home.

Lately, a respite worker has been coming over to relieve us by watching Andy for several hours a couple times a week. This has been so awesome, because it gives us time to spend with our daughter alone. It is hard to go out in public with Andy, because he gets very loud, and can have meltdowns. It is a nice change to go out to restaurants or to do an activity without Andy being there. We are far less stressed and there is less anxiety about being out.

My daughter really appreciates all the time I have been spending with her. We both took a sewing class together last night. She really feels we are bonding again, which we haven't been able to do for a long time. We are trying to live our lives and get through each day as best we can.

There are times that I still feel sad about Andy's situation, but I don't let it linger for more than an hour or two. I try to distract myself by doing other things around the house, and planning events to get together with large family, or plan activities to do with my husband and daughter. Life is what it is and we have to deal with it and keep moving forward.

Fall fun

Just checking in, the school year is going well. We just went on a Halloween camping weekend and had a great time.

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.

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. 

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.

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. 

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. 

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.