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!

Bonding more with Andy

Andy let me cuddle with him yesterday. Normally, if anyone tries to pull Andy close to themselves, he pushes them away. He doesn't enjoy hugs, and he lets you know that he doesn't want to be hugged or held by pushing with his arms. I was sitting by the Christmas tree yesterday, and Andy laid his head on my shoulder while cooing. He stayed there, so I started to hug him. I laid back with him as there was a pillow behind us. He stayed in my arms, and I pulled a blanket over us. He let me cuddle with him for about 20 minutes! It was so nice, and I soaked in every minute.

I continue to hold him under his arms as he takes steps around the house. He is a long ways from walking, but I think the stepping is doing his brain good. He seems to be making minor improvements in his brain, by taking about 200 steps a day. He steps with assistance from his bed to the living room, and to and from the kitchen table. We carry him as little as possible now, and demand that he steps more often.

Andy enjoys being upright. He lets us know when he is ready to sit and play with toys by attempting to sit down after taking his steps. If he wants to stand a little longer, he will keep his legs locked and sometimes clap his hands. Andy plays a lot on his belly as well. He does not ever get into a crawling position. If we try to put him on all fours he protests and straightens out to get back down. It is hard to keep him on hands and knees because it takes too much strength. I do not feel he will ever crawl.  I don't feel his brain understands it. It is much easier for him to take steps, than to coordinate four limbs moving in perfect synchronicity to move forward.

I am continuing to see very small changes in him, which I think is due to his brain slowly developing. I feel that the steps he takes each day is helping this along.

Headphones with music help Andy to calm down

I purchased some noise-canceling headphones for kids on Amazon.com. I was looking for something to go completely over Andy's ear, and that he couldn't easily knock off of his head.

We hook the headphones up to an iPod. Andy loves listening to the Black-eyed Peas. We play the entire "The End" cd for him, and he loves it. He will listen to the songs over and over.

If Andy gets cranky, or becomes inconsolable, putting the headphones on him calms him down. It seems to distract him, and gets him to just focus on the music. He quiets down almost instantly.

I mainly bought these for an upcoming trip we are going to take to Florida on a plane. However, we've been using them several times a week to calm Andy down. One time he was trying to eat dinner and started crying. I put the headphones on him to get him to finish the meal.

Another time, we had some smaller kids over and the little one was crying. It was upsetting him, and he started to cry.  So I put the headphones on him, and he cheered right up. He started laughing and enjoying the music.

We do have to try and keep Andy from messing with the volume controls. We set it so he can't make it too loud, but he will start crying if he turns the volume all the way down. Then when I look to see what's wrong, I find that he can't hear it. My husband clipped the iPod to the back of his pants, and this kept him from being able to reach the volume controls.

These headphones have been great, and I hope they help on our trip to Florida. I also got a battery pack to charge my phone and the iPod if we are on a plane or in a restaurant, and the battery should go dead. I will also be bringing Andy's inflatable bed to sleep in at the hotel. We got it from Walmart. I use it, so I don't have to worry about him falling out of bed.

We will be visiting a water park soon too, so I will be bringing the bed and headphones. I am hoping Andy will enjoy the trip. He likes playing in water, so I thought he might like it.

Andy's practicing stair climbing

Andy doesn't have any balance and cannot stand on his own. However, when I hold him at the waist, he will take up to 25 steps at a time. He seems to be getting faster at it too. I've tried to have him go up steps several times, and he just wasn't ready for it.

I've been leading Andy towards the stairs again, to see what he'll do. He will lift his leg up to attempt to put it on the first stair. He doesn't usually lift it high enough, but I grab under his knee and place it on the stair. I then lift him at the waist, while he stands on the stair with one leg, then he brings the other leg down.

I am hoping that we can avoid having to buy a chairlift/ stairlift for Andy when he is too heavy to carry, if we are not back into a ranch (one-level) home by then. The bathtubs are all upstairs right now, so Andy has to be carried upstairs several times a week. He helped walk up the stairs the other day.

Andy does not crawl. I've tried to put him through the motions of crawling up the stairs, but it is frustrating for both of us. Also, it is so strenuous and straining on me to have him fight me the whole way up the stairs as I try to bend his legs to make him crawl that I don't do it. I can carry him on my hip right now up the stairs at five years old. Seven, eight or nine years old, this might not be possible.

For now, I am trying a little here and there to get him familiar with the motions of stair climbing.  Going down the stairs is a whole different story. It is very scary for him to be unfamiliar with how to step down, and he gets frightened and puts his arms over his face. It is much more easy to carry him down the stairs though, so I will be happy if he can help me with climbing up. He claps when we get to the top, so I think he knows we are happy he did it too.

Happy Day for Andy

Andy was so happy and cheerful today! I wish I knew what was putting him in such a good mood. He was laughing and smiling so much, it was so nice to see. He had a great day at school, and didn't cry at all at home. He was cracking up laughing a few times. I've never seen him smile so much at us.

This was a great day, and I am grateful for it. I am happy that we all got to have some good bonding time with him today. I think he felt a lot of love today, and it seemed he was really enjoying life. He also continues to take several steps around the house, while I hold him under his armpits. It seems to be good for his brain.

Feeling triumphant again

I was talking with a psychologist the other day, and she asked me, "Doesn't it seem like there are
more special needs children, now, than ever before"? It is probably true. I am so amazed at how many families, just in my neighborhood, have children with special needs.

It does bring about a sense that we aren't so extremely different from everyone else. Other families right in our same neighborhood are dealing with the same issues that we are. It helps me feel that I have someone real I can talk to, or share an "I've been through that" moment with someone on the walk to my kids' school.

I feel so lucky to be able to go online and find quick answers to burning questions about my son, or other problems that come up with him. And isn't it great that we have blogs, and internet boards that we can help each other on? We would all be so isolated without the internet, and left to feel so terribly alone. I am grateful we have more resources today than ever before.

My self-help program is going well. I've been seeing a counselor, and have picked up great tips from other support groups that I go to. One of them is setting small goals for myself.

I used to end each day feeling so defeated, because I had an overwhelming list of things that I wanted to get done, and could never get through in one single day. There was just too much that I wanted to accomplish, and things weren't prioritized correctly.

Now, I've taken a step back, and I only give myself small daily goals. When I accomplish these goals, I end up feeling triumphant. It is such a better feeling, rather than feeling I have failed. Feeling that I got done everything that I wanted to get done is so satisfying.

I like setting small goals and achieving them, because it helps me get through the tough and challenging times. When my mind is set on painting a room in my house, or organizing clutter, I am not spending endless amounts of time worrying about Andy.  Changing the way you see things can really have a positive effect on your mood. It has really been helping me, and it helps the way I parent my kids.

Andy still has inconsolable crying episodes

Just an update on Andy's crying episodes. He still has them. I just don't write about them that often. We just took him up north on a camping weekend, two and a half hours from our house. When it came time for him to go to bed, he flipped out and cried for three hours straight.

I didn't know what was bothering him. He was crying in such a frenzy, that his pajamas became way too warm. He was covered in sweat. So, I changed him into cooler pajamas. Then I gave him some medicine, thinking he must have a headache, after screaming for over an hour. I tried holding him, then my husband laid in bed with him.

He was like a newborn infant crying out of control, and any little noise that happened would get him crying again. It was horrible, and we were too far away from home to drive back. Once he fell asleep, he stayed out for the night, which was great.

We went camping to see the fall colors, which are much more brilliant and vibrant farther north from us. The land belongs to my husband's parents/my in-law parents, and it was so beautiful! This time of year is so great for pictures. I stood in the woods for a while just watching all the leaves falling from the trees like it was snowing. It was so peaceful, and was a nice calm relaxing moment. I took a little video of it too, but it's hard to see the leaves falling.

I wasn't able to get many pictures of Andy, because he was crying soon after he was outside for a while. The weather was cold, but he was bundled up. He just didn't want to be outside, but I got a few at least.

Andy keeps getting sick

Andy is constantly putting his fingers in his mouth. Everything goes to his lips, because he comforts himself by touching his mouth. So, this is causing Andy to take in all kinds of germs. He has only been in Kindergarten for five weeks and he has missed 5-6 days of school.

It saddens me a little bit to know that during the eight weeks he was at the Autism Center he NEVER got sick once. He never missed a single day. They kept him with one person all day, and maybe they were good about wiping his hands down. Childrens' immune systems supposedly get better over time with being exposed to lots of children, but Andy's isn't up to speed yet.

We are looking into getting a new insurance policy for just Andy that has an Autism benefit on it. We cannot sign up until mid-November, because this is when open enrollment is. Once he gets on the new insurance, we will have to have Blue Cross pre-authorize his therapy at the Autism center. After that happens, we will have to hope they can make a spot for him.

I think it will greatly benefit Andy to be back at the Autism center, and I am not sure how much school he will be able to still attend. I hope all these experiences will amount to something good for him in the end. It is so hard to know what is the best thing for him, and making the decisions is stressful.

Andy's been sick

It is very difficult when Andy gets sick. He cannot tell me his throat hurts, or he isn't feeling well. He just cries and screams all day. When I notice he is refusing to eat, I usually suspect that his throat must be sore, and give him Tylenol. But until he isn't wanting to eat, I have NO clue what he is crying for. Hours and hours of inconsolable crying.

I kissed his forehead and noticed it was hot. Then I knew for sure he had a fever. When that went away, he was so irritable for several days. He had to miss many days of school. He seemed to have caught a cold after that virus was over, because the coughing started up. Today he was happy, and had no fever, so I sent him to school.

Now I have what he has. I had a scratchy throat and my stomach has felt terrible all day. Now I know how he felt, and understand why he was crying so much. It is so frustrating for both of us that he can't tell me what is wrong with him. I can't stand it. The poor guy was so miserable for days, and I didn't know what to do for him. I had to curl up in my bed for a while to feel better. I'm glad I kept bringing him back to his bed when I didn't know what to do, and he was just falling asleep. My poor son, I feel like this is so awful for him.

Missing ABA therapy

Now that Andy has been in school for almost four weeks, I am missing all the good things the ABA
therapists were working on with Andy. I visited Andy's classroom, and got to see him going to music class. I also got to see him in circle time and snack time. The classroom, and going to specials like music and art, seem so good for Andy. The experiences seem very enriching for him. But I also miss his ABA therapists.

They were so good at what they did. They analyzed his behaviors and worked hard on how to change them for the better. They were starting to understand Andy, and beginning to really shape him. I took him out of ABA therapy for two reasons. My insurance company was rejecting all claims, which was scary, and school was starting.

I was told I needed to leave Andy in all-or-nothing ABA therapy. They wouldn't agree to 12-15 hours a week. I was told it wouldn't be enough to make a difference for him, and that he needed the full 25 hours a week. This therapy is very costly, and our current Blue Cross Blue Shield plan is rejecting all ABA therapy claims. They say we have no Autism benefit and they do not fall under the mandate to pay for Autism claims. We are searching for a new policy now.

I wanted Andy to start school and see his classmates again. I wanted him to see his therapists, and have the benefits of gym class, music class and art class. All the different experiences seem to be so exciting for him. When I went to observe him for a couple hours, I did see him crying quite a bit, but I also saw him having great experiences too.

If we can get an insurance policy that has an Autism benefit, I'd like him to receive ABA therapy, and go to school maybe 2-3 days a week. I think this would be a good balance for him. The next step will be finding a place that will agree to do this. If he has to have 25 hours a week, this will leave no time for school activities.

The ABA therapists were making such good progress with Andy. At his school, I'm not sure how much progress they will make in him. It is hard to tell right now, if I am making a mistake by valuing the school program so much. His doctor told me that is a big mistake to take him out of ABA therapy, but that she doesn't want us to go bankrupt trying to pay for it.

All we can do is try to secure a new policy and continue to move forward. I'm hoping that soon we will find Andy the balance he needs to progress. This is a tough choice.

Andy is still pointing to communicate

Andy has been pointing to communicate with me when it is time to eat. I set down his water cup, a salad, and his dinner plate. He will point to the item he wants, when it is time for him to take his next bite. He has been doing this consistently for a week now. It is so awesome to feel like he is understanding what I am asking him, and that we are communicating. I know that the summer in ABA therapy has helped this along, and I am very grateful. I've tried to catch it on video, but Andy gets camera shy.

Andy's first day of Kindergarten with his big sister

Andy swinging on Labor Day

Andy getting sleepy on his piano

Blue Cross Blue Shield is rejecting my son's Autism claims for ABA therapy

This is so awesome! Blue Cross Blue Shield of Michigan has decided to reject all of my son's Applied Behavioral Analysis claims for Autism therapy. I spoke with one of their representatives before he got any therapy done. I noted the time, date and duration of the call. I gave the rep each CPT code that the Autism Center would be using. I was told each would be covered at 90 percent, and using the Autism diagnosis code of 299.00 was fine.

When the center called BCBS of MI they asked if an authorization was required before going ahead with therapy. They were told "no auth is required, just start billing". So, based on my call to them, and their call, we started therapy. The center didn't bill until about a month out. I checked to see if there were any pending claims, every week. I finally could see some, when he was already at week 6.

How much does ABA therapy cost? This is what I kept asking the center. They would tell me, it's different for everyone, and did not want to give me a dollar amount. Well, ABA therapy costs around $1,000-$1800 a week. Yes, a week. They billed per fifteen minute units, and it is pricey. My son was there for 5 hours a day, 5 days a week.

It did benefit him, as he is pointing to what he wants now. I offer him two choices of what to eat, and he points to what he wants for each bite. ABA therapy has helped him to communicate with me. He was worked with one-on-one for the whole day, and now he is starting to show signs that he did learn some communication skills from them.

It is a bummer that Blue Cross Blue Shield is doing this to us. We have a PPO plan. It is super expensive too. They usually cover everything. A rep called me and told me, "although the president passed something to make insurance companies pay for Autism claims, we don't fall under the state mandate". So, my son's claims have been rightfully rejected.

It is coming down to them finding the recording of me talking to the representative on the phone. They are supposed to listen to it, and see what she told me. Hopefully, they will realize they should pay. We wouldn't have gone through with the therapy had we known they wouldn't pay.

Week Seven of ABA therapy

The staff at the Autism Center says that Andy cried a lot less this week. However, he continues to throw a fit whenever we pull up to the center. They have been trying to talk me into getting him to stay there for the entire school year, and pulling him from his public school program. 

I have thought about this for a long while, and have decided to not do this. He is going to go to school in the fall as planned. I don't feel comfortable completely removing him from his school and putting him only at the Autism Center. I think he is going to love school so much, and really enjoy it. I just can't imagine him not going to school with his therapists and friends right now. Everyone has done so much in preparation for him coming to the school. I really wouldn't want to have to tell the staff there that I'm pulling him out for a year or two. 

Then later, he'd end up there when the Autism program is done, which they told me insurance stops paying for 25 hours a week at age 7. Then people typically put their kids into first grade. I'm not sure if any services are paid after that. This is what staff told me, when they were urging me to keep Andy in for the next year. It might seem like, okay, now he's ready to come to school. When in fact, he would still be really far behind, and less comfortable with everyone. 

I am happy with my decision to go ahead and put him into Kindergarten. It just feels right to me.

My son's chromosome SNP array testing shows a deletion

Andy's chromosome SNP array showed that he is missing a small piece of DNA on chromosome 9 (formally designated as deletion 9q22.2, 600kb, containing two known genes). This finding may be the cause of Andrew's delays, and physical and mental impairments. It could also be a polymorphism, which is a chromosomal change that is often family specific and doesn't cause a disease. My husband and I will have to give blood samples to see if we are also missing these genes. If we are not missing them, then it may be labelled as the main cause of Andy's problems.

Andy has a lot of trouble learning, and remains very infantile. When I search for this deletion online, I find other children who are also impaired like Andy. Some of them took a long time to learn how to walk, but eventually did. Some of them still do not speak in a way that anyone can understand. The doctor assured me that each case is going to be different for anyone with this deletion, and that we cannot use the computer to know for sure what Andy's outcomes will be. Sigh.

Week Six of ABA therapy

I drive Andy to therapy each morning, and he is happy in the van. As soon as I pull into the driveway of the therapy building, and park the car, Andy starts to have a huge temper tantrum. Every day he does this. It tells me that he isn't thrilled about going to this place.

They tell me that he usually calms down ten minutes after getting inside. I ask them to keep me informed if they can't console him, if he isn't eating, or if he's so sleepy, he can't stay awake. They don't usually call or text me, even though I ask them to. I usually have to bug them, by texting, asking for an update on Andy's behavior.

Sometimes, I randomly show up thirty minutes to an hour early to take him home. Sometimes, I find him there happy, and sometimes he is very sleepy. I still feel that five hours is too long of a day for him, and that I will be cutting down his kindergarten day to four hours. At least, for part of the school year. I should be able to tell when he is no longer napping for me, that maybe he could withstand a longer day.

For now, he is completely worn out and ready for a nap, when I get him home from therapy. He is also quite angry. He often fusses most of the way home, and is sometimes outraged and in full tantrum as we pull into our neighborhood. I lay him right in his bed after we walk in. He usually sleeps for an hour, sometimes two, if my daughter doesn't wake him up by being too loud in the house. She will soon be in school again, and this shouldn't be an issue at that time.

I just don't know what to think of this therapy. I can see Andy trying to point a little bit more, however, it is hard to tell whether it is helping him or not. I do feel that it is positive for him to be receiving this therapy, but I don't feel that I would like to fully replace his kindergarten experience with the ABA therapy. I would like to try to mix the two together, but I don't know how that will work just yet.

I'd like Andy to be in a solid routine of going to school every morning, and possibly going to ABA therapy a couple afternoons a week. Only after he's come home for a nap, and has had a snack. I'll have to run that by them, and see if that will be an option.

Week Five of ABA therapy

Andy has been going to therapy for five hours a day, for five weeks now. I am still feeling that this is too long of a day for him. If I arrive 30 minutes early, I find that he is falling asleep. I feel that if he is too tired to work, we should just call it a day. They feel that he should tough it out. I don't see the point.

I expressed wanting to pick him up an hour early from now on, but it was just blown off. I think I am going to start doing this at least twice a week. When I see him putting his head down on the table, I think it would be fine to just let him go home.

They are working on trying to get Andy to point at what he wants, and to put his hand on a toy car and move it back and forth per their request. They say, "do this", and show him their hand moving the car back and forth. Then they pause to let him do it. If he doesn't, they then prompt him by putting their hand on his hand and having him touch the car.

When Andy's kindergarten starts, I don't think I am going to have him try a full day there. I think this is too long of a stretch for him. I think when Andy gets all the stimulation, and physical demands, he gets very worn out. Then I am left with an overtired and extremely cranky kid. Either that, or they should let him lay down for a nap when he shows he's really tired. In kindergarten, they will let him nap. At therapy, I understand that they don't want him sleeping, so I'd rather them call me to come get him.

Week Four of ABA therapy

All this week, Andy gets so worn out at therapy after about three hours. He is enjoying craft time around the other kids, and also song time. However, they keep him in the back on his own when they feel the noise levels are getting too overwhelming for him.

I think this is boring for him. I think he starts to fuss and whine because he wants to be around the action more. I have to bring this up at our next meeting. They have been meeting with me every other week, so that we can go back and forth about how Andy's doing there.

This week, they've been telling me it is hard to get Andy to eat anything. He usually just willingly eats all of his snacks and food, but for the last few days, he is showing them that he doesn't always want to eat. It isn't like him to pass up food. I think though, that they need to be trying to feed him near the other kids, and maybe they are. I have to look into this.

For today, I checked in with them after he had been there for two hours. I wanted to know if he had eaten a snack, and did he seem tired. They've mentioned to me that this week he was trying to put his head down a lot, and kept rubbing his eyes. He is so tired and worn out lately. I don't know if it is productive for him to be there.

I told them that if he refused to eat lunch, then I wanted to come pick him up early. I didn't want him to be there for five hours, and not have eaten much of anything. When this happens, he is a total wreck when I pick him up, and cries in a huge tantrum all the way home for 25 minutes.

I picked him up an hour early, it is Friday, and he is on week four of therapy. He had several days of not eating well at therapy only, but ate fine for me for dinner at home. Sure enough, an hour early, after four hours of therapy I pick him up. I take him to a fast food place and he eats like he's starving. I felt so bad. He enjoyed it so much, and kept saying "umm". It even sounded like he was trying to say "mine" to the burger.

We are going to discuss next week if we should cut down from five hours of therapy to four hours. He is just so worn out, I don't want him to stay there the whole time just for the sake of putting the hours in. I'm going to make suggestions, and am willing to see if they help. However, school will be starting soon, and I am going to want him to be among his peers again. I'm not sure how we will work in the ABA therapy and kindergarten. It is yet to be determined.

Andy pointed at me today!

When I went to pick Andy up from therapy, he pointed at me when he saw me. I was so proud of him. It was nice for him to look up and recognize me and then point to me. It was like he was trying to tell the staff, "mom's here"! It was really great.

Then, I was feeding Andy his dinner and salad. When he was ready for his next bite, and I was taking too long, he took his finger and pointed to the salad. I told him, "Wow, good pointing! He just pointed to his salad!" It gave me a great feeling that he had just successfully communicated with me. He did it just once, and it really made me happy.

Week three of ABA therapy

Week three has been rocky. Andy spent a lot of time crying at the center, but was also constipated. I informed them of this, and Andy was rough until he was all cleared up on Friday. They had me listen to some of his crying to try and help discern what he might be trying to communicate.

I emphasized that I often do not know, but I felt that he sounded tired. Andy has gotten back to taking daily naps right after he returns home. He has a lot of stimulation at the center and is asked to do several tasks that tire him.

I was told that it would be hard work to try and "undo" five years of Andy crying to communicate. However, I don't know that Andy is crying to get what he wants, or to communicate. It is just Andy. He cries when he's tired, angry and frustrated. It has never gotten him what he wants, because honestly, I don't EVER know what he wants. And I have honestly, never, gotten him to stop crying by giving him something-EVER. Because I don't know what he wants. I don't know what he wishes to have, and I've never felt that I have successfully remedied his crying.

So, I don't feel that his crying has ever been negatively reinforced in anyway-whatsoever. Though, I am being made to feel this way. As though, Andy is somehow manipulating me through his crying to get what he wants. This just simply is not true. He doesn't think like that. I don't even think he would be able to conjure up such a grand master plan.

I really wish I knew what he wanted, so I could just give it to him.

Week Two of ABA therapy

Andy is still getting used to the new routine of getting up in the morning and getting ready for therapy. I tell him that he is going to go play today. Sometimes, he cries all the way to the therapy building (25 minute drive). Other times, he's happy in the car.

Some days, after working with Andy, they tell me he had a good day and played well. Other days, they tell me he had tantrums throughout the day. Some days, he won't eat much there and can't easily be consoled. I told them to let me know of this in the future, as he might have a headache or gas issues, that could be solved by me bringing up some medicine.

It has been nice to have them working with him for several hours a day. I can tell that they are worn out when I pick him up. He is a lot of work, and can be quite exhausting, I know.

Me and Gabby time

There has been such a huge relief that has come along with my son Andy being able to attend an ABA program several days a week. It has allowed my daughter and I to spend time together this summer. Previously, his preschool wasn't long enough to make lunch plans. I had to be home at noon to get him off his bus. Now, he is going to school a bit longer. So, we made plans to go eat lunch with my mom.

It was so nice, and non-stressful, that I could have cried. I didn't have to worry about Andy's constant squealing and screeching and all the loud noises he makes in restaurants that make people stare. You can also tell that they are wondering, 'why would they bring him here'? Well, we need to eat too, and I  occasionally deserve a break from cooking. You can't always get a babysitter when the mood strikes on the spur of the moment. There are just so many reasons why we bring him into a restaurant, and we always leave thinking, never again. Or at least until I'm feeling brave again.

But not today. I wasn't in a hurry, or frustrated with my son. I didn't want to rush the waiter to stop talking and get the order in, we just sat there with no worries. I wanted to cry because it was too good.

We can shop without Andy kicking and screaming in the cart, and actually try on clothing without trying to keep Andy calm. Luckily, my daughter enjoys shopping, especially if she is going to get something out of the deal. We got to step onto an escalator, which we never do, because I am always pushing Andy around. My daughter thought it was magical and so cool. She wanted to go up and down, and hold my hand getting on and off, because it was a little scary too. And so we did.

She checked out all the "fashion gowns", leftover prom dresses and picked out one for me to try on. She told me to please put it on, and then twirl around. So I did.

I am just so grateful, and am happy to get some time with my daughter.

Week one of ABA therapy

Andy has completed one full week of ABA therapy. He isn't crying upon entering the building any more. He has learned that it is a fun place, and that they will be playing with him there. He is receiving therapy five days a week. He has fun there, and only gets fussy at times.

On the fifth day of therapy, Andy was very worn out. He was having trouble keeping his eyes open, when I picked him up and then put his head down on his tray. He never sleeps in the car, but on this day, he slept all the way home.


I am supposed to attend a parent seminar on ABA techniques for parents, so I'll write about that after it is over. So far the center has been great, and Andy seems to be trying to communicate a bit more with us.

ABA therapy starting soon

Andy will be receiving ABA therapy soon, several days a week. He has been in for observation twice, and he did not do well. He cried a lot, and had fits. I was so frustrated. I could hear him screeching behind the walls as I was sitting in the waiting room. I think it is because he doesn't know the center yet, or the people. He just knows that I am handing him off to these strangers, and is taken back into a room filled with loud kids, and he gets frustrated.

I've been feeling so sick about it lately. He usually enjoys therapy and school. But he isn't giving this new center a chance. He cries as if they are cutting off his leg. I can see through the window that they are just trying to play with him, and speaking nicely to him as well.

I was looking forward to him getting to spend some time at this new center, as a fill in for school. He doesn't understand why he doesn't have school right now, and he isn't getting to ride the bus. My fuse is so short lately. He is so whiney and cries a lot. I can't always get him to stop. Sometimes, he just needs to be alone. This too shall pass- is all I've got.

Andy's 5th Birthday

We celebrated Andy's 5th birthday yesterday! He was a little overwhelmed with all the people over. His sister Gabby was also celebrating her 7th birthday. Andy laid down for a long nap during all the commotion.

I've been trying to remember to make sure I hold him in a standing position while he's playing at least once a day. We also have a stander that keeps him on his feet with a table in front of it to put his toys on. Andy is actually seeming to want to stand more often now. If he gets fussy on the floor, sometimes me holding him in a standing position helps him to calm down.

We were at the park today and I stood right behind him and had him leaning against me while he was standing. Then I realized that it is better to have him holding himself up, so he can practice balancing himself. So, I kept putting one of his hands on the bar and telling him "you have to hold on, or you'll fall". I still stayed right behind him, because he forgets and lets go.

I was happy to see that sometimes he'd switch hands, and hold on with the opposite hand and play with his free hand. That made me so happy to think that he is understanding something. He still continued to let go though and fall backwards. When he did this, I would just put his hand back on the bar and tell him again, "Andy, you have to hold on", and he would hold on for a few minutes.

I use his chair to transport him to and from the park. Today he was really fussing once we got there. He just did not want to be in the chair any longer. So, I put him in the swing for a bit, then we moved on to a standing activity. I think it wore him out pretty well. He was real tired when we got back home.

Andy continues to make sounds

Andy makes more and more sounds every day. He now says "bay, bay, bay" quite often. It used to be rare to hear it, but now my daughter and husband have heard him say this too. Sometimes he will even say a distorted version of baby. I think the fish oil is helping him. He is also shy to talk, so he is becoming more confident to try to speak.

Yesterday, he was in his room resting and needed a diaper change. I was in the hallway and thought I heard him trying to say "help". So, I went into his room to say "Andy, did you say 'help'? Oh, you did say help, you need a new diaper!"

It is truly exciting to think that he may be on the road to verbally communicating with us. We have yet to hear from his ABA therapy center. I have to call them this week and see what the hold up is on getting his first appointment set up.

Summer is fast approaching as well, and I have to get summer therapy and recreational plans in motion. I've also been sprucing up our house by putting paint colors on the wall, and it has everyone in a better mood. The house is currently all white, and needs to finally get some personality! We like the results so far!

Andy's IEP was today

Andy's Individualized Educational Plan (IEP) meeting was today. His preschool teacher spoke with
Andy's future kindergarten teacher during the meeting and gave tips on how to soothe Andy, and spoke of his likes and dislikes at school. I also informed them of Andy's new Autism diagnosis, and of how I am going to give Applied Behavior Analysis (ABA) therapy a try with him as well.

I also brought up concerns of possibly needing bus transportation next year for Andy, despite living very close to the school. Unfortunately, there are big physical challenges/obstacles to getting him to the school in his wheelchair. One of which used to be missing sidewalks! This issue was resolved, but ramps/approaches still need to be added to current school walkways as they are not handicapped accessible.

The weather has also been a huge issue this year, more so than ever. This winter has been a terrible one, and it makes me worry of how I am going to get Andy to school next year in his wheelchair without constantly getting stuck in the snow all the time. This prompted me to add a transportation statement into the IEP, which notes that "Transportation by bus with a lift and tie downs needs to be available at the request of the parents". The reason for this is because I don't expect to be needing to use a school bus for Andy unless we have bad weather conditions.

This winter 2013-2014, Michigan has had record breaking snowfall of 94.8 inches. This has surpassed the old record of 93.6 inches in the year 1880 to 1881! Which for me, meant that I had trouble getting my son to my daughter's school in his wheelchair at times. His wheelchair became stuck in the snow on several occasions, due to my subdivisions lack of clearing the common area sidewalks, and my daughter's school not doing their job of clearing snow away properly. It was very nerve racking and hair pulling to say the least. Luckily, I didn't have to bring him to the school very often, but next year I will have to daily.

The picture above shows me at the park with Andy just days before the final record breaking snowfall. We were at the park enjoying a lovely 70 degree day, and then several days later the temperatures plummeted down to 30 degrees and we got two inches of snow. I know the weather has been crazy everywhere, and I have come to expect the totally unexpected as normal for the past few years now.

I'm very excited for the upcoming school year, and I think Andy will be too. I think we are going to start seeing some wonderful changes in Andy. It will be so great to have him involved in highly beneficial programs that will help him flourish.

Exercising is helping me be a better mom

It never fails, I was trying to get my new routine started of working out a couple times a week, and I picked up strep throat somewhere along the way. Which I then gave to Andy. It was a bit of a road bump.

I went to some exercise classes for a couple of weeks, and the results of feeling less stressed about Andy and family life were immediate. I really enjoyed exercising and taking time for myself. I seemed much better able to handle the stresses that Andy deals out. I was also happier towards him, more understanding, and sleeping better through the night.

I've also been working on trying to be more understanding with my daughter. A lot of times I am not very forgiving with the fact that she is only six, and doesn't have a lot of logic and comprehension of things. I find myself having a very short fuse with her every day.

My bowling league is coming to an end, which was a night out that I got each week. I should really substitute that night by doing something with my daughter, but I'm sure it will rarely happen. There are always so many things that come up, and it is just easier to stay home.

In more exciting news, Andy is occasionally attempting to put random syllables together! They sometimes sound like real words. He blurted out in the grocery store today after a lot of high-pitched squealing, "Haaaay, ebb-er-body" and then nothing else. It was exciting to think he is attempting to talk.

I am currently on the kick again of giving him the fish oil squeeze packs once a day. I think it is stirring up something in his brain. I am going to try to keep it going a bit longer this time, before giving up on it. It's so easy to throw in the towel with it and think, it isn't showing me any results, just forget it. But I think it has a cumulative effect and you really have to just keep up the faith and give it daily no matter what you are seeing come out of it.

Any other tips on how to get him to talk to us would be great!

Andy's been officially diagnosed with Autism

It has been recommended to me by several health professionals to have Andy evaluated for Autism. I was told this would become more important around age 4 or 5, but the concern wasn't heavy at 18 months old, but mentioned to me. I recently realized that a lot more services could become available to Andy, should he receive a diagnosis of Autism, so I was interested in pursuing it, as he is approaching five years old.

My insurance company, Blue Cross Blue Shield of Michigan (BCBSM), has to have several things
happen before they will accept a diagnosis of Autism. Once all of these things have happened, a case can be presented to them for the approval of the need for Applied Behavioral Analysis (ABA) therapy. These things are: psychological evaluation, speech evaluation, and neurological evaluation.

The DMC Children's Autism center extensively interviewed me first, as part of the psychological evaluation, asking me "yes" or "no" questions about Andy's behaviors. A lot of the questions were, "since he was four years old, have you seen this..." Or they would compare when he was a newborn or toddler, compared to, since he was four years old. The next part of the psych eval involved a one-hour observation of Andy.

They wanted to see if Andy would share things with them. He did not. He keeps to himself while playing. They wanted to see if he would respond to his name when called, he does not. They mimicked having a sick baby in the room to see if he would show compassion or concern, he did not. They tried to see if he would try to draw them into his play, like extending toys to them, giving them something if they asked for it, would he look at them to want them to come join his play, he did not.

They met with the speech pathologist, and neurologist and looked at all the psychological reporting and observations. They had me come back in for a feedback visit. They told me they feel that in addition to Andy's mental and physical impairments, that he also has Autism. They said that it can be difficult to tease out what behaviors are from his developmental delays, and what is from Autism.

Andy also exhibits lots of hand flapping by his face, putting objects and his fingers to his mouth, covering his face due to loud noises or when he's frightened, and they feel these behaviors could be from the Autism part of it. He has self-injurious behaviors, such as head banging, and face scratching. He has frequent meltdowns, at any time , and at any place. He doesn't show awareness of what is socially right or wrong.

I have never had an opinion on whether Andy has Autism or not. I went through with these evaluations, because I want Andy to receive the maximum amount of services that he deserves. Now that he has this diagnosis, he can possibly start to receive intensive ABA therapy, which has been shown to very positively help children with Autism, developmental delays and other disorders.

The paperwork they sent home with us also shares several Autism websites and techniques that can be used to increase Andy's communication with us. I will list these below. The PhD delivering the news told me that one of the main goals of the ABA therapy is going to be to increase communication. Other goals include: increasing peer-interaction (responding to children, interest in peers), socio-emotional reciprocity (offering comfort), play and leisure skills (imitation, pretend play), shared enjoyment and offering to share. I cannot schedule any ABA visits until my insurance company approves it, which will take a couple weeks.

The documentation will also be helpful to submit to the school because it states that according to the American Academy of Pediatrics (AAP), for young children with a diagnosis of the autism spectrum the AAP recommends:

• Intervention consist of a low student-to-teacher ratio to allow sufficient amounts of 1-on-1 time and small group instruction to meet specific individualized goals. 
• Provision of intensive intervention, with active engagement of the child at least 25 hours per week, 12 months per year, in systematically planned, developmentally appropriate educational activities designed to address identified objectives.
• Inclusion of a family component (including parent training as indicated)
• Promotion of opportunities for interaction with typically developing peers 
• Ongoing measurement of child's progress toward objectives
• Incorporation of strategies to apply learned skills to new environments and to maintain functional use of these skills.

For further information regarding the American Academy of Pediatrics' recommendations on treatment of children with ASD, please go to:
http://pediatrics.aappublications.org/content/120/5/1162.full.pdf+html

Here are the web resources they shared with me for Autism:

http://www.autismspeaks.org

http://autismallianceofmichigan.org

http://autism-mi.org/

http://michigan.gov/autism

http://www.asatonline.org/  (Association for Science in Autism treatment)

http://www.ninds.nih.gov/disorders/autism/detail_autism.htm   (NIH Autism fact sheet)