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.

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.