Thursday, February 13, 2014

Up To Date with Eli and Zackary

  The last few days, between the snow, ice and unbearably cold temps, I have found myself with some free time. I decided to charge up the Kindle and search for something to download and read since I cant slip away to a book store quite as easy I did before.
  I'm a fairly frugal lady, so I found myself downloading the free trial pages, reading those, then moving on to something else. Nothing really seemed worth the entire purchase.
  I have never really cared for fiction reads. I love self helps, biography's, ect. The last several years I have buried myself in books about children and their diagnoses as well as blogs of others parents who raise them. I can relate to those parents. I find comfort in reading them. The more I read, the more I said "hey, it's like that here too".  I started to wonder why I waste my "free time" reading these stories that are identical to mine as opposed to writing my own post. I use to do that a lot and found great comfort in sharing our own moments. And like most everything else I do, I stopped for fear people would get tired of hearing about it. But, being a parents of two special children, I know I never get tired of reading about others. I cry with those parents. I laugh with those parents. And I rejoice with those parents.

  I think it's time for a update on my boys.

  Eli is doing really well. Last Fall we finally found another Dr. that suited me. He started him on a new cocktail of medications that together have changed that kid in ways I thought would never happen. He hugs us, kisses us, talks to us. He screams less in anger and shows more healthy emotion. he is completing his school work efficiently as well as checking and double checking his work. He has been on the honor roll all year. The move to a private school was the best move for him as well as Zackary. Currently he is on 27mg Concerta, 25mg Zoloft, 1mg Risperdal x2 and Trazodone as needed for sleeplessness.  Just recently he has taken a interest in staying with Mom and Dad a couple nights a week. Between all these changes, I have found myself actually exhaling.

  Along with the new Dr. last Fall, Danny and I also decided it was time to think about his future. We decided to look into applying for disability for Eli. My fear for the last several years were that if something were to happen to me, I needed to know Eli was taken care of. I wanted to make sure he'd always have a good insurance that allowed him good mental health care and with drawing disability it opened the door for him to have services that we otherwise couldn't afford or were not offered to him. Disability is such a harsh word that I told only a few people of our intentions. After all, he's not physically disabled. He's not even mentally disabled. He has challenges that are crippling, yes. But, unfortunately it is what it is and it's labeled "disability".  I skipped filing on our own first and went straight to a lawyer. He fit all the criteria to be approved right off the bat but there was one problem. You see, we have college funds for each of the boys. Because Eli has a account in his name in excess of  two thousand dollars, the lawyer said we would still be denied. I sulked about this for several weeks. I am simply trying to secure his future. I feel we shouldn't be punished for wanting him to be able to attend college if he chooses to. That pretty much brings us up to date with male child number 2. Now, lets move along to number 3.

  Zackary is doing well in school as well. Matter of fact, he does so well that I forget he too needs attention. He is always quite. Never complains. Rarely ask for anything. His work is beyond perfect. He's has almost completed a entire year of school and starting on the next grade level soon. He cruises through life so quitly and easy that when he does have a few bad days it leaves me in total disarray. It slips my mind that he IS on the Autism Spectrum.

  Zackary was diagnosed sorda informally two years ago when I took him to Eli's Dr. because something wasn't quite right. At that time the Dr. said, "IF there were to be a Aspergers scale from 1-10, 10 being the most extreme case, Zackary would be a 4. Over the last couple years I'd peg him to be a 6 now.  This year many more of the traits have came to surface. he has extreme reactions to minor upsets. He cannot be flexable with plan changes. He gets stuck on topics. Danny and I aggravate him and say his button is stuck. He gets upset by ambiguous language and interprets language very literally. He's a concrete thinking. Things are very black and white. He has difficulty making and keeping friends. (I know exactly what my three friends are thinking who are reading this. Just keep your two cents to yourself. I already know where Zackary received this Aspie trait and don't need you telling me.)  He also use to really enjoy a particular little gal here in our neighborhood but now he just finds those visits uncomfortable and hides in his room. His coordination has not improved either. I still only allow him to drink from cups with lids and he doesn't even try to carry plates of food or cereal bowls to and from the table anymore. He knows he wont make it there. He still finds comfort in jumping, twirling, flapping and flipping. He taught himself how to do back and front handsprings. It's amazing to see him do it. I know this must sound like he has no quality of life but you couldn't be more wrong. He laughs and he laughs a lot. It's the most beautiful sound in this entire house. He enjoys "winning". He loves games and competition. Yes, when he looses it's tragic to his mood. But when he wins it's as if he bubbles over. I use to hope he improved with his thinking but nowadays I find myself hoping he never ever changes and remains like this throughout his whole life. He is perfect.

  I hope all my fellow parents are surviving this weather. I'm anxious to hear how things are with you all. What have you done to keep the kids happy and busy this winter?
  Today is their 100th day of school and their Valentines Party. Here's a photo preview of their festivities.