Lovin' our Big Boy!

Lovin' our Big Boy!

Saturday, June 11, 2005

Journal from August 04


Today marked an anniversary for Jack – it has been 1 year since he started therapy. It started innocently enough at 15 months, with a referral to our Early Intervention Program by our Pediatrician when Jack had no words at his 15 month appointment. A speech delay, he suspected, citing the remarkable progress his own son had made in speech therapy, “graduating” in just 9 months at age 3. Calls were made, appointments set, an evaluation made, and then the “global developmental delay” term started floating around. I don’t think we were all that worried at first. Speech therapy twice per week and Specialized Instruction twice weekly also. The evaluation cited receptive and expressive language skills at 10 months, cognitive skills at 10 months, adaptive skills at 12 months, gross motor skills at 11 months, fine motor skills at 17-18 months and personal-social skills at 10 months using the Battelle Developmental Inventory (age at testing: 15 months). The Speech Pathologist further assessed Jack’s language skills at that time as receptive language – 6 mo. and expressive language – 5 mo. So, today he underwent an evaluation with the same evaluator one year later. I will receive the results of this evaluation tomorrow. Also, his current Speech Language Pathologist will provide us with an assessment that she has conducted recently to determine Jack’s speech skills to date. I think that we will see some awesome measurable growth from these reports. We have 9 more months to put the pedal to the medal and get as much from the outstanding therapy programs that we have right now. I figured out that TEIS is paying for $575.00 per week of services for our one little boy! That is almost $30,000 per year! I am so grateful to the TEIS program.

And only 9 months until Metro Schools take over. Ugh. I am prepared to battle. I am gathering examples of funded ABA type assistance right now. As always, I will continue to pray that God will put the right people in our path to allow us to take the necessary steps to help Jack reach his full potential. He has done a remarkable job thus far. Our pediatrician, referring us at 15 months, our service coordinator, working to get us all the services we need, Rob, breaking us in to the world of Autism gently, Kristin S, a remarkable speech teacher with a heart for autistic children, Trina, an autism mom and mentor, and the many wonderful parents who have given me advice on diets, therapy, supplementation, and how to parent an autistic child.


Time flies, or so the saying goes. We have just returned from our first official family vacation. We went to Destin, FL with my parents and my brother to celebrate my parents’ 40th wedding anniversary. Aah, what fine examples of wedded bliss. They are quite cute to watch, most days. We packed up 1/3 of our entire house, including all food to be consumed by Jack, numerous toys, beach towels and the like, along with a stroller, pack-and-play, cd player (for nap music), booster seat, inflatable pool infant boat, etc. Good thing we only have one child! There wouldn’t have been room for a second! The condo was perfect and Jack settled right in. Mom & Dad brought along some of their toys, so Jack had a nice mix of toddler toys to occupy his “condo” time. The beach was a bit of a disaster, as Jack would not allow one single grain of sand to rest on his skin. We dressed him in socks and tennis shoes, placed him on a towel that was spread out over a bed sheet. The first few moments were mildly whimpery, until I couldn’t keep up with the sand. He’d touch the blanket, I’d wipe the sand off. Then he began to get sweaty and the sand began to stick. In two or three minutes he was in a bit of a frenzy. We lasted 10 minutes or so each day. This brought up discussions of how I, as a child, was exactly the same way. Just what you need while you are in turmoil about the emotional wellbeing of your baby! Reminiscent cajoling. Overall, Jack was a delight. He enjoyed the pool and talked up a storm! He has just started parroting – repeating most anything he hears, and some of it in full phrases! He was cracking us up with sayings like “Awesuh” (awesome), “There you go!”, “Hey Everybody” and “Tennessee”. His favorite activity was walking down to the elevator and pushing the button. Then he’d run to your leg for safety. Once inside the elevator, he’d try to push as many buttons as he could before you stopped him and then recited the floors as each one posted on the screen. Several mornings he was at the front door by 7 a.m. saying “door, open, walk!” It was adorable! Mom and Dad were absolutely smitten with him. They couldn’t stop commenting on how much improvement they saw over the last visit, 4th of July, just 7 weeks ago. They complemented his improved eye contact, joint attention with them, use of language and increased jabbering and overall increased awareness. They said the vacation was perfect. The drive home was a little rough, as we were in the car from 10a to 7 p. When we were about 15 min. from home, Jack started saying “all dee car” (all done). He was truly a trooper.

Kiley came over for a spell today to pee on our playroom floor and to play with Jack. When she arrived, she sat down next to Jack to see what he was playing with (which happened to be these new Elmo and Ernie animated babies). Jack looked over at her and touched her hair and said “oh soft!” and then went back to playing. It was so endearing. He does this to Colby when he pets him and also did it recently to my bare arm as he stroked it. My sweet little lover boy.

Tonight we ordered pizza, as I still haven’t made it to the grocery store. Pizza is Jack’s current favorite dining delight. He loves to watch “Barney’s Pajama Party”, where they sing a catchy little ditty titled “Pizza”. He sings it intermittently during the day. I might mention that since going GFCF he only eats the soy cheese off the top. No crust. Yes, I make him a special gluten free crust just to hold his precious soy cheese while it melts in the oven. Tonight he ate what was on his plate and looked at me and said “more pizza”, just as plain as day. No hesitation between words, no prompting. Progress. Delightful progress.


Today marks the end of an interesting era: “Mumble Man” – Jack has stopped saying any words inside his mouth. Huh? When Jack first started talking, he kept a few words tucked away: Blue, book, balloon, purple and orange. No matter how we tried, he would say these words with his lips closed. Almost amusing. Susan was also locked up in there. But over the last few days, these words have begun to pop out! First he said balloon, then purple and orange, and today, Susan AND blue!!! Hurray for Jack! So awesome!

We sure are enjoying what seems to be another big growth spurt. New phrases, more requesting (“more juice”), appropriate unprompted commenting, and the beginnings of a sense of humor! Jack may turn out to be a funny man! We are watching a little person emerge right before our eyes. We are awestruck with the splendor of it all. Saturday night we went outside to introduce Jack to sparklers. As his eyes got as big as saucers, he let out an emphatic “Cool!” that perfectly described the moment. It truly was a cool moment. Our worlds were one. And it is happening more and more. We are sharing lots of “moments” together. Last night, I got out “The Monster At The End of The Book” to read with Jack. He seemed to be intently listening as I read the words on each page in my special “Grover” voice (the same one my mom used when reading the story to me). Then he took the book from me and went through it himself. As he got to the first page he muttered his version of “what did that say?” and then giggled. Then on to the next page, “Shhhhh!” he commented, along with the text of the second page. Then on to my favorite, where Grover says in a tiny voice “Do you know that you are very strong” while buried under a pile of bricks. Jack used a high pitched voice with perfect inflection to mumble “do you know you very strong?” Then he laughed so loud! This has been going on all day, as well. He “reads” his book, sharing each page with me. I must videotape this. This is one for the record books.

Scott said to me “he’s coming out of it” tonight. Is it too early to get our hopes up? There is such obvious progress that we can’t help but be encouraged. However, I know that he still has such a long way to go. Susan fell down during therapy today and asked (begged) Jack for help. He didn’t even notice and could not be coaxed to help pull her up. Socially he will have to work very hard to maneuver in this life, I imagine. I hear myself say often that we are lucky. Funny! Who’d ever thought we’d say we are lucky, with Jack’s autism? But it seems we are. Why we got the autistic kid that responds so magnificently to therapy/intervention, I’ll never know. Perhaps it’s because we have figured out what to pray for. To ask God to put the right people in Jack’s path, to arm us with knowledge and to lead us down the right therapeutic roads. I would love for my baby to be “normal”, but can’t really wrap my brain/heart around asking God to heal him. I think he’s just fine the way he is (of course with the steady improvements). What would our lives be like if we’d never faced this challenge? How much of Jack and our lives would we have continued to take for granted? God does make all things work together for good.

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