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.

Monday, April 20, 2015

Trying to find SXI programming

I am trying to get what Andy is entitled to, which is a free and appropriate education. I recently discovered on Andy's IEP paperwork, that he is in a moderately impaired program, and not a severely-multiply impaired program. I thought he was in an SXI room, but then started talking to some county representatives and found out that he is not.

The schools don't want to be forthcoming with people. They want to give out the minimum possible, and you have to play detective to figure out what your kid is truly entitled to. I started wondering why Andy isn't being offered a full summer program. I spoke to a county parent advocate and also a social worker at a good school with an SXI program.

I found out that when kids are classified as SXI (severely multiply impaired), they are entitled to more than the standard 175 days a year of school. Some programs offer 205 or more days, which takes the kids through the summer, without more than a two week break.

Andy's school is not offering this. I put in writing to the special education director of my son's school, that I am concerned that his program isn't meeting his needs. We are meeting this week, because they have to respond to concerns in writing within a certain number of days. The school will either have to re-design his current program, or pay to bus him to an appropriate program in a "neighboring" school district in our county. I will know more in a few days.

We have already spent a few years under the false understanding that he was receiving SXI programming. They have gotten away with giving him the bare minimum for too long. It's time for a change.

Wednesday, April 1, 2015

Getting therapy lined up for summer

I am trying to figure out Andy's therapy schedule for the summer. So far, it may include private PT, private ABA therapy and possibly some days at an extended school year with his Kindergarten teacher. 

Based on what the insurance company is approving, I don't think Andy will be able to attend therapy on a daily basis. This might be good, because he is only allowed to miss ten days of therapy for the year. So, I figure if he is just going three days a week, it will allow us to have long weekends sometimes for camping or waterparks. 

It will be nice to have a more flexible therapy schedule this year. Last year, it was very rigid and set in stone, and I felt I couldn't change any of the dates or times. This year, things seem to be more flexible, which makes the whole family happier. 

Tuesday, March 31, 2015

ABA observation

Andy's ABA observation appointment went well. He was crying at first and a bit cranky, but we got through the hour long observation. I brought a container with small bits of cut up sandwich, so that he could have lunch. The therapist wanted Andy to do something in exchange for his sandwich bites, which I figured would happen.

Andy became in a better mood as he was eating. The therapist wanted Andy to pick up a small block and hand it to me, before he would get a bite. Andy has never handed me anything EVER. So, I was really feeling like this wasn't going to happen. I would give Andy the block, and he would hold it and not want to let go. I cupped my hands under the block, asking for it, and when he let it go, he would get another bite.

I was surprised that Andy was trying to put small blocks into a small square container. I don't see him do this too often, but know he is working on this with the OT at school. He did this several times, as they wanted to see if he would "dump and fill". I was pleasantly surprised that he was doing what they wanted to see.

Now that they have seen where he is at with his skill level, they will come up with a treatment plan. Andy should be starting up his therapy in a few weeks. I am looking forward to see what he will take away from this therapy.

Thursday, March 12, 2015

ABA Therapy Intake

Andy's ABA therapy intake was completed today. It included interviews and questionnaires with me about his behaviors. Now an observation time has to be set up with Andy. Then a treatment plan can be written up to hire and train staff for him.

After the staff are trained, they will call us to set up a time for Andy to start coming in for therapy. This will take several weeks, but I'm glad I got the ball rolling in the right direction. Andy has benefited from ABA therapy in the past, and will now return to it with a new insurance policy.

His past employer-based insurance did not fall under Michigan's Autism mandate voted in to require insurance companies to pay for Autism services. His new individual policy purchased just for him falls under the Autism mandate, and services have been approved. The center just has to create a spot for him now, and he can get back to it.

Thursday, March 5, 2015

Andy is a mosaic of disabilities, time will tell what's in store for your child

I just wanted to point out that Andy doesn't only have a thin corpus callosum, or only microcephaly. Andy has layers of problems with his underdeveloped brain that go deep into his DNA. I am saying this because I notice parents are searching out "thin corpus callosum" on the internet, and perhaps getting this blog. I just want to reassure you that there are tons of kids with only a thin corpus callosum that do really well. There is a wide spectrum of things that can happen for kids with microcephaly, and developmental delays. Things can be mild or severe with any diagnosis it is impossible to predict where your child will fall.

I don't want to worry any frantic parents searching the internet that my son is what your infant with agenesis of corpus callous will look like. The truth is, no one can really tell you what your child's possibilities will be. It is the toughest most cruel and challenging waiting game EVER.

For years, it's been torture, but I've come to terms with everything now. My son's major area of concern now is the microdeletion he has within his DNA. He is missing two major genes that are most likely causing him the inability to learn like normal kids do. He also demonstrates autistic behaviors, along with high irritability, which a neurologist explained was probably from the corpus callosum not being fully connected.

His brain is very underdeveloped and he has low amounts of white matter. All variables are extremely stacked against him. However, he is blessed, in that he can eat food, he can laugh and squeal, army crawl after toys, and use his hands to get them. He is even now able to open and close his toy computer on his own. A year ago, I'd have never thought he could do this.

It is good to see what might lie ahead, to brace yourself for it, but I really haven't seen any two kids alike on the internet yet. Kids surprise you, and my son has surprised me. It has taken so many years to see so little progress, but I'll take it.

We are blessed that he is so happy now, and he enjoys life. He has so much joy, so I have stopped feeling so bad for him, because he is happy. He doesn't know any different. He doesn't know what he might be missing. He has friends that love him and really enjoy being around him. He has his own little life and people other than his family that truly care about him.

He's a charmer. He has his own little personality. He's so innocent. He wouldn't hurt anyone ever, and doesn't even know how to. He is a kind soul, and enjoys being around other kids. Certain things make him laugh, and he really laughs out loud. He loves music, it makes him so happy, and calms him when he's upset.

He's got his own destiny, and I'm here to care for him. I've finally allowed myself to have my own life, and he has his. All the major ups and downs will slowly level out for you with time. It just takes time.