Since last I blogged, Jonathan has continued his wild streak. He was a wild man at Christmas and I chalked that up to travel and being out of his own environment. He did well the first two weeks back and the last two weeks have been quite crazy. He supposedly is doing fine at Hand In Hand (where he attends on Tuesdays and Thursdays) but I have had bad reports the last two weeks at the Bell Center - he has hit his volunteer, hit other children, etc. At home he has been hitting us, pulling hair, tearing things down, turning over chairs, eating his foam padding on his pack 'n' play, destroying his brother's "art," and throwing toys. I am not sure what the catalyst is or has been - not getting enough attention at home? the upcoming baby?
A friend who has a child close in age to Jonathan with DS hired a speech pathologist to come to her house last fall to work with their daughter, in addition to all the other therapy. Every time I spoke with a speech therapist Jonathan has worked with, they would say he was doing just fine for him. I called the therapist of our friend and she came two weeks ago Wednesday. Not only is she a speech and language therapist but she also works with kids whose behavior issues stem from speech problems. My suspicion has been that Jonathan is frustrated and is acting out because he cannot communicate verbally. I have noticed a rise in aggression each time he adds more words to his vocabulary. The woman who came to our house said she could help Jonathan - her first visit was to assess if he really needed help (since the other therapists we have worked with said he would not benefit from outside help). She is coming again tomorrow.
Jonathan is saying (or signing) drink, water, eat, dinner, lunch, TV, movie, book, Curious George, Thomas, Woody, Buzz, open, close, door, car, three, downstairs, upstairs, teeth, bath, shower, toys, couch, bed, table, Mama, Daddy, Jackson, Nana, Pops, Grammie, Grandpa, Gigi, Gracie, swing, outside, slide, no, yes, ball, zipper, Doritos, chips, pretzels, ice cream, milk, popsicle, apple, banana, help, bowl, funny, cheese, Veggie Tales, music, sing, potty, poop (I know that is gross to some of you but he must get credit...), diaper, choo choo train, and so many more.
We had Jonathan's IEP meeting in December - our first of many. I used to teach and had sat in on many of them as the regular classroom teacher, never realizing I would one day be on the other end. So, it was an interesting experience. Jamie had no exposure whatsoever so he had more questions than I did. However, they were good ones because I did not think to ask them.
It was hard because the therapists used testing/evaluation methods to determine how much therapy Jonathan "needs." He does not qualify for PT even though he is not functioning like a typical child his age. Since he is fairly coordinated for a child with DS he can't have PT. In an evaluation for speech, he tested as being able to say/sign ten words or less. However, the words I listed above are not all the words he can say/sign and it was frustrating. His OT had similar scores for him and a plan for pottying and interacting with other kids.
Last night I attended a new parent meeting for parents with kids with DS and our speaker was lawyer. She had a lot of insight at to what our rights were as parents and the rights of our kids. She went over the laws for special needs - IDEA, ADA, and section 504. I have heard all that in education classes and as an educator but did not know the law. She mentioned that most special educators do not know the law either and it is up to us to know it and stay on top of our kids' rights. I felt overwhelmed because there was so much information and I began wondering if Jamie should have attended instead of me. Jamie has a real head for jargon - no matter what the business. He is a camellian - he fits in well and can adapt to any conversation - legal, financial, medical, another language, etc. I don't know what it is but it all makes sense to him.
Jackson continues to enjoy school. He doesn't look forward to going but is fine once he gets there. It still tears me up to drop him off and watch his little person trudge up to the door amidst all the other kids swarming around. I have a hard time not crying.:) He is still so kind to Jonathan despite Jonathan's rough treatment. Jackson helps Jonathan talk and acts as interpreter. They are both so encouraging to each other. We were playing outside with other kids one day and Jackson had to sit out and cool off for a few minutes - there was Jonathan right beside him, comforting him. Jackson does the same for Jonathan. I remember when we brought Jonathan home, thinking it wasn't the sibling we thought we were going to bring home for Jackson. Thank goodness we are not in charge - God knew who Jackson needed!
Jamie and I are gearing up for the last Mercedes Marathon where we will actively raise funds for the Bell Center on Jonathan's behalf. I am not running - I had planned on at least running the half if I wasn't pregnant. Since I ran in my last two pregnancies and miscarried in both, the doctor has advised me not to run now. While I am sad not to run for Jonathan in his final year at the Bell Center, I am grateful we have another person on the way! So, stay tuned for ways you can support us in our final venture!
Have a great week and thank you for keeping up with us!
Julie
juliewarren73@charter.net
Jonathan and his great-grandmother, Gigi.
Jackson, Jonathan, Mom's pudgy tummy, and cake.
Jonathan LOVES Woody the Cowboy from Toy Story (Doody) and so Mom had their favorite "Cake Maker," Mille Fore, make Jonathan this Woody pound cake. It was delicious!
All of us checking out the toys. Jackson has great difficulty when it is someone else's turn to have a birthday so he usually participates in the gift opening, if possible.
He got a toilet. He has shown tremendous interest in the potty - flushing it, getting the toilet paper, helping other people go, etc. He can go and will go for a treat - toilet paper!
Jackson, Julie, Jonathan, and Jamie at Jonathan's party in Columbia.
Grandpa ("Bapa"), Jonathan, and Grammie (also "Bapa").
Grandpa and Jonathan.
Jackson got a pizza kit from his Aunt Nancy. We made it for dinner the night we arrived home from traveling. The boy loves to cook!
Jackson and Daddy taking a rest out in the hammock in Grammie and Grandpa's backyard.
The Warrens at the Christmas dinner table.
Aunt Nancy (Grammie's sister), Aunt Betsy, Gigi, Grandpa, Mrs. Eddins (best friend of Grammie and now mother-in-law to Uncle Stephen), Aunt Jessica (Uncle Stephen's wife), Jackson, and Mommy.
Jonathan enjoying his chocolate dessert.
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