Thursday, October 30, 2014

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.

Wednesday, October 22, 2014

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.

Sunday, October 12, 2014

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.

Tuesday, October 7, 2014

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.

Tuesday, September 30, 2014

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.

Friday, September 12, 2014

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.

Monday, August 25, 2014

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.

Thursday, August 21, 2014

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.

Thursday, August 14, 2014

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.