Stumble, Fall.....Move Forward

So it was blatantly and excruciatingly brought to my attention yesterday that some who truly care about David, maybe even need to know about what is going on with him and follow his progress, only get their information from facebook or this blog. Looking at the last date in which I blogged, it shows that I have really fallen down on the job. I haven't done a whole lot better on facebook. Sorry.

Much has happened over the course of this last year, which will take more than "a" blog, but for today, I will catch you all up on the most recent events in Davids life.

As a parent of a special needs child, it can be overwhelming at times. I have had people tell me they don't know how I do it. I always say, "You do what you need to do for your child, regardless of what that may look like to the outside world." The truth is though, sometimes parenting David can be difficult and daunting because either A) you have no clue what you are doing or B) you have a clue but prefer to live in denial. It then comes down to knowing your child and going with your gut. Of course....isn't that what parenting any child comes down to?

David has many diagnosis that cause him to fall under the "special needs" umbrella. There is everything from intellectual/learning delays to muscle issues (Cerebral Palsy). Sprinkle in seizures, Hydrocephalus and the ever changing physical issues such as lower immune system and now kidney stones...and there are days when even after 15 years, I want to crawl back under the covers and try to remember a time when the term special needs had no meaning in my life. Unfortunately, hiding out is not an option and my reality...our reality, is much different than most. That is why I put on my big girl panties and remember that before special needs came into my life,  I was a much different person; in fact, I was a  person that I would never wish to be again. David is a gift that has changed my life for the better in so many ways and to give him anything less than my best every single day would be me failing as his parent. So we move forward...sometimes stumbling....maybe even falling.....but always forward.

So yes, I still vacation in denial from time to time. It is because of this that I have learned to keep a lot of notes on David. I jot down everything from small things like what his favorite piece of clothing seems to be at the time, to behaviors, health and interactions with other people. These notes often help me to piece together the puzzle that is David and his particular form of specialness. They come in especially handy when I am not seeing the big picture....even when it is staring me directly in the face.

When David was very young, they tested him for autism among many other things. It was decided by all involved that he was definitively NOT autistic. Since I knew absolutely nothing about autism and had no desire to have to stuff more information into my already overstuffed brain where David was concerned, I was extremely grateful that we had dodged this particular bullet and we moved on.

About two years ago, after David had a major hip surgery followed by a broken leg, he went back to school. It was at this time, I started to see David resisting change. He went back to a teacher that wasn't all that excited at the prospect of him coming back (let's face it.....the boy comes with a lot of baggage) and she I don't believe was equipped to handle any of it. She did nothing to make his transition back to school easy and in fact, she did her best to turn his school world inside out. David began having a lot of seizures and was having trouble focusing at school as well as coming home and taking hours to decompress. At the time, I just thought that it was so much happening in his world (surgery, hospital stays, pain, recovery and trying to get his life back....not too mention the school issues) that his mind and body were just dealing with way too much. It brought the not-so nice side out of me and after a few go rounds with several at the school, Davids school life was brought back to normal and the seizures quit and David went on to recover nicely. Problem solved?! However, I did start to see new little idiosyncrasies in him such as a few obsessive compulsive (OCD) issues. In the ER or hospital, his bed rails HAD to be up at all times. It was literally a battle if the rail had to be down for a procedure and one doctor commented that he thought the rail being down caused David more stress than the IV stick. He wasn't wrong. Then I noticed that David had to hang his Spongebob pillows by their arms, in a certain order. And then there was change..........

I started watching David and realized that he is very smart. He seems to have an inherit ability to tell if a change is temporary or permanent and I can tell this by the way he acts. We can go into a new place and he seems to be able to tell if this is just a place we are visiting or if it is going to become a regular thing in his life. If he senses it will be regular, he usually has immediate sensory over stimulation and starts acting out, clapping loudly and even trying to leave. He knows the meaning of an EXIT sign and will look for one and start pointing to it. However, if he senses we are in a new place and then gone, there is little to no reaction.

It is the same with people. He had not seen one of his older brothers for a couple of years. When he saw that brother again and the brother kept coming around, David started having seizures and he would either not come around the brother when he was at the house or he would immediately over stimulate. It took me awhile to put two and two together and when I did, we lessened the visits and the amount of time during each visit, until David became used to it. He knew his brother was going to be a permanent person and he had to get used to him. Then again, David can meet a new person on the street, at a store or even in the house and he seems to know they are only there temporarily. It is crazy, but putting all the pieces together made me realize that David's ability to handle permanent change was not what it used to be. And if you make the change sudden.......fugitaboutit. It is just too much for him.

Last year was a different kind of school year for David. The old teacher was gone and there was change. His new teacher unfortunately wasn't there much but the substitute who helped her out, was a veteran sped teacher who knew her way around a classroom and sped kids. She was amazing and although he did initially have a few issues at the beginning of the school year, he seemed to enjoy school. It was also a year that David was sick a great deal so he didn't get to spend as much time at school as I would have liked for him to. Walking into his classroom was always fun for me because the kids always seemed to be interacting and having their own fun. There was a sense of organized chaos that seemed to both entertain and teach the kids without over stimulating them. The teacher made the environment laid back and comfortable and you could tell that staff and kids responded well to all of it. Gone were the days of the kids being cubby holed and unsocialized. They were a real classroom and I was overjoyed.

This year, there was change again. A new permanent teacher was in place and with that a new atmosphere and some other new people. The year started much like last year ended. The room was bright, fun and inviting and the teacher had even encouraged each para to make their students area as fun and comfortable as possible. Of course Davids was adorned in Spongebob and the first time I went in to see it, David excitedly pointed to all of his Spongebob accessories. There seemed to be a good mix of fun, learning and comfort in a relaxed atmosphere. I was beyond thrilled.

Then, about a month or so ago, David started having seizures again. He went from a couple per month, to two or three per day. I started noticing that he didn't want to get out of bed in the morning and he would fight me on everything from putting on his clothes to even eating breakfast. In the evenings he was coming home agitated and sometimes even aggressive and it would take me a good two hours to calm him down. Then he quit sleeping at night. Some nights he would sleep maybe a couple of hours, but many nights he would never shut an eye. Guess who else never shut an eye?

I was confused and questioning everything from his age to hormones and worried about everything from him gearing up for a really big seizure to the possibility of a shunt malfunction. I called the neurologist and was told to just keep an eye on him and of course keep taking notes. Then one day, I had to go to the school for something and I walked into his classroom. It hit me like a ton of brick. Davids classroom was now dimly lit....almost dark. Gone were all of his Spongebob accessories and all that was left was a Spongebob sheet on his cot, and his usual spot had been moved clear across the room. I knew immediately why David was having issues. It was the change and for him I am sure it seemed drastic and permanent. I asked the teacher "What happened?" She explained that she felt that the room had been over stimulating and that she had plans to make it a sensory room and wanted it to have a more calming affect for the kids. I completely understood that and I think it will be amazing, but for David....it was just too much change.

At this point I was beyond sleep deprived and both Davids mental and physical health were weighing heavily on me. Obviously the change was too much on him mentally but his lack of sleep was beginning to worry me. I was really afraid he was going to get worn down to the point of getting sick and that would make the whole situation go from bad to worse. Sleep deprived or not I had to figure this thing out and make a plan that was best for David.

I completely understood/understand the path that Davids teacher is taking with the class. I think her ideas and plans are going to be amazing for the class as a whole and that is and should be her goal. However, it was not working for David and while the class as a whole is her priority.....David is mine, so I began trying to figure out where to go from here. I kept David home from school because I was determined to get his seizures under control and get his sleep habits straightened out. The first day I kept him home, he was agitated. Now "I" was messing with his schedule and bringing on more change. He didn't have any seizures but you could tell he didn't know whether to play and be happy or to be mad and ornery. That night he didn't sleep at all. The next day I decided that he simply didn't know what was going on and maybe I needed to sit down and explain it to him.....so I did. I told him he was staying home from school for a while and I wanted him to feel better and to get some sleep. He immediately got up and played with his toys for awhile, then ate and then.....laid down and went to sleep. Other than waking up to eat, he slept for almost 20 hours straight. Each day he slept better and his attitude was oh so much better. Most importantly though.....there were no more seizures. I knew I was on to something, so I started doing some checking and learned that I could do home bound schooling for David where his teacher designs a lesson plan and his para comes to the house and implements the plan for a few hours everyday. All I had to do was get a doctors note. As luck would have it.....we had a neurology appointment the very next day.

On telling the neurologist all that was going on, it was mutually decided that changing David's seizure meds was a poor option at this time, mainly because his therapeutic levels were all within normal range and that it was felt his seizures were caused by environment, which brought the neurologist and I to a conversation I didn't want to have.

Over the years, what they call the Autism Spectrum, has widened. They are finding that many sped kids have behaviors that fall into the spectrum and if a kid has multiple behaviors in the spectrum then the possibility of an Autistic diagnosis becomes great. David has several, not the least of which is his OCD and his progressive inability to handle change. The doctor agreed that home bound schooling was the best option at this time. He also suggested that David have some further testing for Autism.

I walked out feeling many emotions. I so didn't want to think about a new diagnosis, even one that made so much sense. On the other hand, knowing that we weren't going to have to go through new med changes and the side effects that go with that and knowing that David would have as much consistency and as little change as I can give him made me feel so much better for our current situation.

So yes, I talked to David about all of this. I made sure he understood the situation as best he could. We made the dreaded IEP changes at school and may have to do a bit more tweaking to get it right, but yesterday was his first day home bound. It went beautifully and it was fun to get to see the school side of David that I don't normally get to see. Home bound school was 2 hours yesterday and by the time it was over, he was tired. I wondered if  there would be side effects from "this" change. So far there have been none. We had no seizures and he slept clear through the night. Hopefully the stumble of the past few weeks is behind us and once again......we are moving forward.

So there you have it. There is more.....much more to Davids story and I promise to try and do better in the future at keeping up. And before I end this today, I would sincerely like to thank all who have helped us in the last couple of weeks including, doctor, his teacher, para and school staff who have gone above and beyond to help me....help him. For this....I thank you all!