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.

Thursday, December 18, 2014

Tips for Planning a Disney World trip with Special Needs

Cinderella's Castle in Magic Kingdom
I've previously been to Disney World in Orlando, Florida and Disneyland in Tokyo, Japan before
having children, so I know the ropes a little bit when it comes to getting around Disney. I've also been once before with Andy when he was two years old, and we did not have a medical stroller or wheelchair for him yet. I would recommend talking with someone that has been to Disney World, as this can be extremely helpful before actually traveling there. Let them know what you'd like to accomplish.

On the plane, I was allowed to bring a diaper bag on for Andy. I put plenty of snacks inside, because one of Andy's main crying triggers is hunger.  Dried apricots and beef jerky sticks worked better than crackers which digest much faster. I also use them in between meals to keep Andy from crying at a restaurant when the food is taking a long time to come out. I was able to fit Andy on the changing table on the plane, but at times I also stood him up in bathroom stalls and did his diaper changes while standing.

I also bought noise-canceling headphones ahead of time, to use with an iPod shuffle on the plane and in the parks, to keep Andy calm. He loves listening to music, especially when it is through headphones. I also purchased a phone charging battery to keep in my purse for when my phone or the iPod battery got low. Andy's iPod shuffle actually never needed to be recharged during the day. I would charge it at night, and he would listen to it almost all day and night without needing a recharge. I clipped it right to the back of his shirt, so he wouldn't mess with it or the cords. The headphones helped him to remain calm on the plane, and on the busses. They helped him to not have to hear other crying children, which gets him upset. He did really well on the plane thanks to these headphones!

My main goal for the Disney part of this trip was to take the kids to eat inside Cinderella's Castle at Magic Kingdom, and at the "Be Our Guest" restaurant. "Cinderella's Royal Table" requires a 6 month scheduled ahead reservation. I had to call at 7:00am exactly 180 days ahead and still was only able to catch a 2:30 pm reservation and it was the last one! The character dinners and lunches are nice because it allows your kids to meet and have photo opportunities with several characters without having to stand in line. After we ordered our food, five Disney princesses came into the room and started going from table to table. (Sleeping Beauty, Jasmine, Snow White, Ariel and Cinderella) They would stop by to say hello, sign the kids autograph books, then stand with them for pictures. We also got a nice 8x10 and four 4x6 photos to take home. I also made other reservations at non-character restaurants to guarantee we'd have somewhere to eat.

Cinderella's Royal Table Restaurant
I searched the internet for blogs about cognitive disabilities at Disney, because the actual Disney World sites don't give you a whole lot of details on what to do or expect. If you are driving to Disney, you won't have to worry about how your wheelchair will be handled by an airline, or riding on a bus from the airport to the hotel.

If you are flying, you will have to tell the staff at the gate that you need to use the wheelchair right down to the plane opening. They can then use an aisle chair if you cannot transfer your child to get to their seat. Andy is still light enough that I can carry him to his seat. Once I had Andy wheeled down to the plane opening, I had to have a family member hold Andy while I folded up his wheelchair. He has the Kimba Ottobock chair and it is quite heavy. The airline staff must have thrown the chair in the cargo hold, because they returned it to me in Orlando with a busted armrest. The armrest was completely severed from the chair.

I was lucky that they handed me the broken piece, because it was needed to put the tray on to his chair. We asked the front desk for some duct tape at the resort, and thankfully , they had some. I was able to duct tape the armrest back on for the four days we were there. It was helpful to have his tray on because it helps keep him secure in his seat, and also allows me to feed him better.

Once I found that the airline had damaged Andy's chair, I was supposed to report it right then at Baggage services, but I did not know what to do at the time. I later waited in a long line at the Detroit airport Baggage services office to make a claim about the damage. The airline is now following up with me about reimbursing us for the costs of repairing the chair. They are getting in touch with a medical equipment company to come assess the chair at our house.  When getting back on the plane I begged the guy that would be putting the chair in the cargo hold to please be careful with it, because it had already been broken on the flight down.

Andy on the Magical Express bus 
Once we got to the airport, we headed to the Disney Magical Express line. I was told to request a special services bus for my son's chair. My son's medical stroller has bus tie downs on it, so that it can be strapped down in a bus, and he can ride in the chair safely. This has to be done ahead of time, and you will have to get these tie down parts from your medical equipment company.

Wheelchairs are always loaded first, before the rest of the general public. This way they can load multiple chairs if needed by folding up passenger seats to reveal more tie down spots. Sometimes, the bus drivers were loading up my son's wheelchair, plus another guest in an electric scooter or push wheelchair. After they are secure, and the rest of our party was on the bus, the rest of the line was allowed to board the bus. The monorail was also wheelchair accessible.

When getting to the parks, the first thing I had to do was go to guest services and request a "Cognitive Disabilities" Card. They will take a picture of your child and ask what concerns you have with your child waiting in line. I told them of Andy's autism diagnosis and brain disorder, also that he cannot walk or talk or understand a whole lot.

Several of the rides were wheelchair accessible, such as "It's a Small World ride" at Magic Kingdom and "Finding Nemo ride" at Epcot. The staff would ask me if I'd like the wheelchair loaded on the ride, or if I wanted to transfer Andy onto the ride.

I would go to a ride and hand the card to the staff member. They would then right down the return time and we could come back at that time to go into the fast pass line. We would still have to wait 10-15 minutes from that point, because there were other fast pass people in line too. Some of the staff members let us board the ride after waiting a few minutes on the side if the line wasn't long. We also had other scheduled fast passes that we used for pre-planned rides. Our whole party of 9 people was allowed to board the rides with Andy. We could also get times for character greetings, and get into the handicapped seating area for outdoor shows if we arrived 30 minutes early for the show.

Be Our Guest Restaurant

Andy had such a great time. He was happy to be always on the go. He loved all the bus rides, and being pushed all around the parks. He really loved seeing all the lights at night. He would just stare at everything and clap his hands. I am really glad that we got to experience seeing Disney at Christmas time this time, because they really decorate and light everything up.

We stumbled upon a dance party at Magic Kingdom and Andy loved it. He loved the music and watching the characters there. We had a great time dancing around. 

We kept a very busy schedule, and were always heading towards the next thing. I planned a whole itinerary weeks before the trip. It was important for me to have the kids see some of the characters they didn't get to see last time. I scheduled fast passes for some characters, and others we used Andy's disability card. It was important to know ahead of time which characters were at which parks, and the time frames that they would be there. That way we could be sure to catch them during our visit. For example, Pocahontas is only at Animal Kingdom, and only during limited times. Also, I wanted to find Merida and Rapunzel this time, both are at Magic Kingdom. We also missed Tinkerbell last time, because she is hidden inside the Town Square Theater in Magic Kingdom.  I used the Disney Experience app to keep track of where to head next.

I would highly suggest having some type of plan for what you want to do when you are there. Fast passes are scheduled on line 60 days before you arrive. It is better to do this, than to just show up there with nothing planned. Restaurant reservations can be held with a credit card. I was able to add two people to my Cinderella's royal table reservation at the park, but they wouldn't do this over the phone. It was better to explain in person that we needed to add two on, although I heard they really won't add more than two people.

Luckily, Andy fell asleep just as we were getting off the plane and continued to sleep in his chair for an hour while I was speaking to Luggage services. He was very warn out after several days with no naps. We still had an hour-long car ride home from the airport, and he never cried once on the whole trip. There were no melt downs, or bad behavior at all! We were very lucky!