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.

Saturday, February 28, 2015

Our insurance company has authorized ABA therapy

We got a nice surprise in the mail today. Our son's individual Blue Cross Blue Shield of Michigan insurance policy has authorized ABA treatment for Andy. The letter they sent also states that the notification we received does not guarantee payment for services. However, they are authorized. It is a little confusing.

They are allowing 600 units of Therapeutic Behavioral Services, with a unit being 15 minutes. It looks like the authorization is only good through March 31st, which doesn't give him much time to get started back into the program. I don't even know if they have trained staff for him yet. Hopefully, the center will be in touch with us soon, and can get these dates extended. They are also authorizing home care training, and training to the home care client, which would be me.

The authorization was done by an outside company called Magellan Behavioral of Michigan. The procedure codes authorized were: H0031, H2019, S5108, D5111, and H0032. These codes were denied by my son's previous Blue Cross policy, because we supposedly didn't have autism coverage on that policy. However, when I called the previous insurance company's policy reps and gave them the above codes, I was told they'd be covered at 90 percent. Then they rejected all the claims.

His new individual policy has Autism coverage, and falls under the state mandate on Autism coverage. Apparently, 80 percent of employer given insurance policies do not fall under the Autism mandate. So, we sought out an individual plan, and asked specifically about the Autism coverage before signing Andy up for it. What a hurdle this has been.

Tuesday, February 24, 2015

Revisiting private PT again

We are headed in the direction of Andy receiving private Physical Therapy again, in addition to school physical therapy. He will be seeing a therapist that he is already familiar with at U of M rehab. I talk with the school PT on occasion, but sometimes it is nice to have additional opinions too. Plus, if he needs to have therapy over the summer, then we will be better able to have it for him.

I just picked up Andy's new Ankle Foot Orthotics (AFOs). He has boots that are two sizes bigger to go over them. Andy's stance is already becoming stronger, so I'm excited to see how much better he will do with the new braces on. They go up to just below his knee. They are supposed to help support his legs and put his feet into the correct position.

Andy currently takes about 200 steps a day, with my help. I hold him at the shoulders and stand behind him. He is not steady enough for me to stand in front of him, or hold his hands. He would have to be able to hold the stance on his own, in order to do that. I don't think it will be very long now until we will see him being able to stand for a few seconds on his own.

Andy does not pull to stand up, or get on all fours, but I know this will come later. He will start to learn this I think as he gets more motivated to get up on his own. It is just what I think after observing him for five years. He has to be motivated on his own, to build the confidence to try new things.

Monday, February 23, 2015

Sunday, February 22, 2015

Moving Along

Andy and I are moving along nicely. We are having very happy and pleasant exchanges with each other, and our bond is stronger than ever. I can tell that he loves me so much. It might be due to him being on his feet a lot more. It is supposed to be very good for the brain.

He has been taking assisted steps now, every day, for months. Every little bit is building up to small amounts of developmental gain. We are both very happy. His crying is down to a minimum. He shows love for me all the time with big smiles, and cuddles. He enjoys school, and I am working on finding some ABA therapy for him again.

The family as a whole seems much happier. I feel I can focus on other things, and that our world doesn't revolve around Andy. He is a part of it, but not all of it, all the time. Things are balancing out a little better and it's been great! Despite the absolutely frigid temperatures we have here, we are all feeling much better lately.

Saturday, February 14, 2015

Need to get back to ABA therapy

It is clear that Andy needs to be back in ABA therapy. They work one-on-one with him on his exact needs. I am learning from my county services offices that ABA therapists don't typically go into the schools. They advised that I contact the special needs director for my son's school district, to ask about having ABA put into his IEP. However, they are doubtful that this will happen. They said I would most likely have to split his day between school and private or home ABA therapy.

The problem is that the last center I had Andy in did not like that option. They wanted him full time at therapy, which we could not afford. Our insurance company would not pay his claims either. Now we have purchased a new insurance policy for him that will hopefully cover ABA. For now, I might just have to settle for Andy being in ABA therapy for the summer, and he would be lucky to get that.

The current school program that he is in is teaching things like writing letters, and days of the week. Andy isn't developmentally at the stage to learn these things. He doesn't communicate a whole lot to anyone, and is still immobile, unable to self-feed, and like a 6-8 month old.

His school provides structure to his day, and gets him out of the house, but I don't know what he is taking away from it. Many professionals have told me his only chance at advancing is through one-on-one ABA therapy. I think I believe it to be true now. I'm not seeing Andy progress anywhere as of now. Whereas before with ABA therapy, he progressed a small amount, which is better than nothing.

I am very stressed with all of this new red tape to deal with and going back into unknown territory. The super cold 0 degree weather is also very non-motivating and makes me so tired. I continue to try and set small goals for the week, so that I can feel like I am accomplishing something.

Tuesday, February 3, 2015

Andy had a Snow Day

We had 16 inches of snow fall in a day and a half, so the kids got to have Monday and Tuesday off of school. Andy can get pretty bored when he doesn't get to go to school. I had to use his headphones a few times to keep him happy. He loves listening to pop music, like Black Eyed Peas, Kesha and Katy Perry.

On top of all this, my daughter quickly developed the stomach flu, which I then got several hours later. We were both so miserable the whole evening. I have been scrubbing my hands and keeping my distance from Andy. I'm praying he will not get this too! He isn't showing any signs just yet, so hopefully we will be lucky on this.

I was able to keep Andy busy with beads and other toys that he can keep fidgeting with his hands, like play food. He also likes his piano toys and toys that play music. Luckily, my husband was able to help out with him a bit today, because my stomach was hurting to badly it was hard to stand up.

It will be back to school tomorrow, so Andy should enjoy that. His friends are always missing him too, when they don't get to see him. If he doesn't end up getting this flu, I will be absolutely thrilled.

Monday, January 26, 2015

Andy has been happy

Andy's been in a great mood lately. He's been squealing and laughing a lot. He's doing much better at school now that he is only going for half days. He has also been far less constipated. I have been regularly giving him stool softener, and it is helping him a lot.

Andy is taking lots of steps around the house, while I hold his shoulders. I think it makes him happy to be upright, and doing things other kids do. He's overall pretty happy most of the time, which is a big change from two years ago.

Hopefully, two years ago was a crying jag that will not be seen again. It was years of frustration for both me and Andy, because neither of us understood each other. He was having major constipation issues, and feeling badly all the time. I was upset and in tears all the time, because I didn't know what to do for him to bring relief.

Andy showed me a little bit of love today by leaning in towards my head and kind of hugging me. Those moments never occurred years ago. Now I've gone from feeling so lost and afraid to feeling so lucky I have him.

Sunday, January 11, 2015

Kimba Ottobock Stroller Leckey model

I really regret getting the Ottobock stroller for my son. The main reason I dislike it so much, is because it is so heavy. The second reason is that it is always falling apart. Screws and other pieces are constantly falling out of it. You have to check it over and tighten everything by hand once a week basically to avoid losing pieces on the thing.

If you go several weeks without tightening screws and knobs, the stroller becomes very wobbly and starts falling apart. This is a four-thousand dollar piece of medical equipment. It's been a big headache if you ask me. Just wanted to put this out there, so that if you are thinking about getting one, maybe you'll think again.