Saturday, November 28, 2009


Since beginning the Zoloft Jacob has seemed more aware of the things around him and interested in a more appropriate way. Recently he has learned there are other itemsthat are not food to be found when shopping. Before taking Jacob shopping was only a challenge because he would get bored and act out by knocking over items or making noise. Lately this has been somewhat better, the noises are happy noises because he realizes there are toys and books and movies in some of the stores. On a recent trip to Walmart we discovered the beloved Buzz Lightyear action figure. Now his providers want me to have his vision evaluated for depth perception and distance but let me say he honed in on that Buzz Lightyear from two aisles over and then promptly grabbed my hand and gestured that I bring him in that direction. He pointed to it. I said "Do you want to go see Buzz?" he replied "yeah". Noticing Buzz was on sale for $20 less than all the other stores I asked, "Would you like to look at Buzz?" Another "yeah" I said "Would you like to take Buzz home?" I got an immediate "YUP" combined with the sign for please. Yesterday we went to a local discount store to look at Christmas decorations. I passed by a table full of items and Jacob dragged me toward the table. (He was in his wheelchair and he still dragged me) At the end of the table stacked on the floor were Christmas trains. (Jacob had previously broken our Christmas train) He grabbed the four foot by two foot box and placed it on his lap and said "I go, choo choo". From the glint in his eyes I could tell, "I go choo choo" really means, "I go home with choo choo" and "you're all done shopping because I really want to go home and play with this." Thankfully the train was ridiculously inexpensive. Other requested items were denied. My boy is fast becoming a shopaholic. I can see that our outings will be limited and there will be tantrums ahead as not everything can "I go" with us. While this all brings new challenges I am thrilled that he is understanding he has the power to request with words rather than tantrums and seems more aware of the process of shopping. He has also been handy in helping to load items into the shopping cart while grocery shopping. Its cumbersome to take him and be slowed down but we have always felt bringing him often helps him access the community and builds life skills. Hopefully we have not created a shopaholic of kleptomaniac in the process :)

Friday, November 27, 2009

Turkey Tracing

This morning Jacob got a notebook, a pen, and placed his hand on the paper and began to trace it. I imagine this might have been something done in school to make the traditional handprint turkey. The fact that school has been out for two days and Jacob initiated this one his own and enjoyed it is a HUGE step for Jacob. Previously he had no interest in writing or artwork of any kind, also he would rip paper, or make marks on objects such as the sofa, or newly painted walls. But this...this is GOOD...this is PROGRESS. I am so amazed and proud. Now to parents of a typical child, a turkey hand tracing by a six year old is just common place. But to those of us with Fragile children...this is just huge. Disclaimer....the pictured handprint turkey is not Jacob's we did not get this involved at the breakfast table.

Sunday, November 15, 2009

Conquering Textures!

Whoohoo! We conquered some textures today. Jacob has been on strike against any rice or noodle product for three years! I can understand the noodles now that we know he has Celiac. Maybe that was just instinctual but even when we make gluten-free noodles, he's resisted. And he used to beg for rice when we would go out to Chinese restaurants. Then all of sudden at three he began gagging and refusing certain textures. These included rice, pasta, vegetables unless they were pureed, scrambled eggs.

Today, VICTORY!!!

Jacob ate Golombki for lunch. Its a polish food that is hamburger, rice and onions mixed with a bit of tomato sauce and wrapped in boiled cabbage with a little more tomato sauce and a sprinkle of cheese. He ate two large golombkis. Maybe because the filling tastes like pizza his favorite food. I use a lot of garlic. Or maybe his polish gene finally kicked into gear :) Or maybe the Zoloft is helping with this as well. I tried giving him a piece of the cabbage with no meat because he has always like meat. He at it. I gave him a big slippery, stringy piece thinking for sure it would get rejected, fully expecting him to gag, and NOPE. Then hamburger that had a lot of rice in it, he begged for MORE. ??????????Go figure. Whatever has changed I LIKE IT.

Saturday, November 14, 2009

Having fun with technology

Jake's new Aug Comm Device can do so many things. I have to admit I have recently lost many hours after he has gone to bed learning how to change the screens, personalize it, import objects etc. Today I was able to add digital copies of video clips from When he plays an icon of Thomas the Tank Engine, he can now watch a clip of it. I also was able to record audio clips of Blue's Clues and make a page where he has icons of one paw print, two paw print and three paw prints. When you press them they will say "that's the first clue" or 'that's the third clue" then when he presses the notebook it plays the part of the song where Steve says "put it in our notebook" and then a picture of the thinking chair that now sings "sit down in our thinking chair and think, think think." It's been a lot of fun and a good deal of frustration figuring it out without having been given a manual or any training. The look on his face when he figured out he good sing his favorite song in the voices of the actual characters rather than the computer generated speech was priceless! I wish I could have frozen that moment in time. It was the look you would see on any adult who had just won the powerball! Awesome!

Sunday, November 8, 2009

What's new???

Well it has been quite some time since I have blogged about anything. In that time so much has been happening. Jacob has seen so many new providers since my last post. We are now using a high tech augmentative communication device on loan to us from the wonderful people at Easter Seals. We will be renting one from AMDi after the loan period is finished. Jessica our incredible SLP at Boston Children's has helped us program it and Jacob seems to really enjoy having a 'voice'. Of course with a 'voice' come new demands. Before there would be tantrums with an unknown cause. Now we have meltdowns when Jake has hit the "I want" and "doritos" button for the 20th time in an hour. Or at school when I neglected to keep the device from navigating to the "I want to watch a movie" and all of the "movie choice" icons while he is in school mode. So now reason is shown to be behind the protests. Now we can see the thought process. Now we have to realize that desires can be spoken and not all desires can be satisfied. Now we have to have a behavior plan.

And on that note Jacob has also started taking a very low dose of Zoloft in an effort to ease some of his anxiety. Now as a nurse I know it takes weeks for Zoloft to be therapeutic even at adult doses and his dose is near microscopic but I swear I already see improvements. Jacob seems to be responding to his name more quickly when spoken to. He seems to notice his surroundings more thoroughly. His eye contact seems improved in frequency and duration. He has always had good eye contact when compared to other autistic children but now seems even better able to focus. He seems less averse to tooth brushing, toileting and other sensory stimuli. I am not saying these have improved to perfection...or that Zoloft is the sole reason for this but I do believe it has helped. I cannot describe the difference I see in him other than that I see a 'spark' a 'flicker' under the surface that was dull and infrequent before but seems to be growing more constant and bright.

Life is now more complicated with a child who can 'demand' things, specific things and whose curiosity for life has now grown but I would gladly repeat 'no' a thousand times per day for his requests and erase the pen marks on my walls (he has discovered he can write) then to ever go back or dim this new spark. Now I have to convince the school staff that this new frontier of defiance and adventurousness is a good thing.