Saturday, September 6, 2014

Aspie-lutely Awesome Joey!!

This summer Joey took a "drug holiday" which means he was off all his medications. We did our first ever drug holiday last year and he did wonderful with it. The main purpose of his meds is to help him slow down and focus better, there isn't much he needs to focus on during the summer. He isn't required to sit still for extended periods of time and has plenty of opportunities to release his energy outside. One of the major factors in wanting to take the "holiday" was Joey's sleeping schedule was so messed up. He was barely sleeping, most nights he was getting roughly 3-4 hours of  broken sleep. We had tried melatonin in the past; it did help him sleep better for the first night, but around the second or third night he would start having night terrors and we stopped using it. Sleeping had been an issue with him once we put him back on his meds last school year. It started off that it would take him (3) hours to settle down so he could sleep, then they upped his dosage because he was still having a hard time in school (the doctor said it was the dosage, not the lack of sleep) that after fighting for hours to get to sleep be was unable to stay asleep. I'm proud to say that throughout this summer he has been sleeping a lot better, he still wakes up too early but he's getting 9-10 hours of rest a night.

Around the same time we decided to take another "holiday" our family doctor moved down south and we had to find a new one. I chose a pediatric doctor this time. I had switched Jacob over to the pediatrian about 6 month prior to having to switch the other boys. There are only 2 doctors in the office and I absolutely LOVE them both. Joey's new doctor was surprised that he had been diagnosed with ADHD at age 6 with only the use of a survey and that neither him nor Jordan had been re evaluated since their diagnosis. She was firm about not refilling their (mainly Joey's) prescriptions until he had a psychological evaluation done. I figured during his "holiday" was a great time for the evaluation that way they could get a clear look at how he was un-medicated. There was a mix up with our insurance and I was told that I needed to reapply that none of us had insurance. After reapplying I learned that there was no need for us to reapply and that we had insurance the whole time. It took about a month to straighten out, and that was a month I could have been looking into getting Joey the evaluation he needed. Trying to get in to see a psychologist before the start of school was a challenge,every place I called had a 9-12 month waiting list. I checked back with the pediatrician to see if a neurologist's evaluation would work, and had an appointment for 1 week later.

It took Joey 20 minutes to write the same four sentences as his classmate.

When we went to the neurologist I kind of had my own ideas of what might be going on with Joey, but kept them to myself. I didn't want to sway the doctor and was curious to see if she saw the same "symptoms" I did. Papa & Grandma watched the other boys so just Joey and I could go to the appointment, I didn't want the boys' "helping" to interfere with the doctors observations. By the end of the appointment the doctor had come to the same conclusion as I, and Joey was diagnosed with ADHD and "possibly" Autism Spectrum Disorder. She said that Joey is definitely on the spectrum but wanted a neuropsycological test for a clearer diagnosis. She said that he is high functioning and is leaning more towards Asperger Syndrome but to see the neuropsycologist. We were also given a script for behavioral therapy and occupational therapy. She suggested that they he may also have disgraphia. After doing some research on what Disgraphia is, I have to say I agree with her. She also told me not to put him back on the medication he was taking, due to the sleeping issues it was obviously not working properly for him.

*Disgraphia is learning disability that effects writing. Often times, and in Joey's case, writing is illegible and the spacing between letters and words is not consistent. Even he has a hard time reading his own writing. Having to write for extended amounts of time cause him pain in his hands and fatigue. He has a very difficult time with spelling and still reverses letters. He has a hard time getting his thoughts onto paper and often times leave words or sentences unfinished.

Joey and I had talked about what "possibly" being autistic meant and what the chances were that he actually had autism. We are very blessed to know people with a different range of abilities, including two who are on different sides of the Autism Spectrum. We have my nephew Matthew whom had lived with us for a year about a year ago and is mildly autistic and our friend "E" who has aspergers. My boys have also been exposed to kids on the spectrum that ranged from severe to mild autism when we use to take Matthew for his therapies. Joey accepted the news of his diagnoses very well. Having a reference point of "E" really helped him see what characteristics of Asperger Syndrome he has. He didn't see himself as "autistic like Matthew" who has more behavioral issues than "E". I knew he would be fine with a diagnosis of Asperger, when I told him "Yep, it would make you an "Aspie" like "E" and he replied "That's because I'm aspie-lutely awesome!! :D Hey, if they say I have Aspergers will you make me a shirt that says that!"

Joey is on the waiting list for occupational therapy at the same facility I took Matthew to. Fingers crossed that we won't have to wait long. Joey is really excited to start therapy, he has already seen the "rewards" for working hard. From things I have been hearing, I may need to do some research on how to get him the behavioral therapy as our insurance may not cover it.

This all took place two weeks before the start of school and we won't have our first appointment with the neuro-psychologist until 2 weeks after school starts. So I was very anxious about sending to school without medication of any kind. Since first grade he has always been on one med or another. I was worried about how the other students would view Joey, would they see him as quirky and weird or think that he was trying to be the class clown or rebel. The first few weeks is when everyone is starting to figure out who to hang out with and who to avoid. There wasn't much I could do to help Joey make a "good" first impression. We talked about what behaviors would be acceptable, but talking about them and him following through are two totally different things.

His first day was only a half day (3.5 hours) and he didn't get much sleep the night before because of Jacob's trip to the ER. He did beautifully though!! He walked into class noticed the directions on the board and got right to work finding his way around the room. The second day though, his teacher got to see Joey as he normally acts (not that he was misbehaving). He had a bumpy start and dug in his heels about getting a particular assignment done. He needed a few reminders to stay on task but as the day progressed he controlled himself better.
*Currently Joey does not have a 504 or IEP in place. We are waiting until after the evaluation to determine what accommodations he may need.

I will keep everyone updated on as we get a clear look at what all is going on with Joey. Until then prayers for him to have successful days in school and to get into therapy quickly would be greatly appreciated.