It's been interesting looking back at how much progress Caleb has made since we got the diagnosis at 2 1/2. He was a lot like Gabe, in the sense that we knew he was different from the moment he was born. He was an alert baby, always wanting to be held and be where the action was. The only problem was that being where the action was invariably overwhelmed him to the point where we were reduced to taking him to a darkened room to calm him. He was an up-your-butt-24/7 kind of baby, always wanting mom, no one else would do.
Caleb was a headbanger and a hair puller and a hand biter. He would put anything in his mouth, rocks, sand, dirt, and his favorite-the string fringe from his blanket, which he would pull out and eat. He was always very fond of high pitched noises, and often preferred to scream and screech. Even with him having speech therapy and learning sign language, his preferred method of getting someone's attention was to stand or sit in the middle of the room and scream or screech at the top of his voice.
When he was evaluated at Waisman Center in Madison, in 2002, we had already pretty much figured that they were going to say autism. He knew a few signs, and only had a few words. He had strange behaviors, and needed things to always be the same. We, at that time, only wanted to have a label that the school district could work with, and wanted to know what kind of things we could do to make things easier for him and help him learn. He entered the Early Childhood program at 3, when he aged-out of the Early Intervention program. He had a hard time at first, and cried a lot, was always upset when it was time to get on the bus and upset when he came home. He finished his first year, with Caitlin in an adjoining classroom, and had actually started to progress a little. Their second year, they were sent to another school, still together and this time in the same class. They were both having problems adjusting, and were upset going to and from school. James was also having some trouble in his Kinder class that he had just started. He had trouble with rhyming words and matching sounds and such.
So, in February of 2004, we decided against the teachers wishes, and pulled the kids to homeschool. I figured it this way, we could work at their pace without all the anxiety and drama, and we could make progress. After a year and a few months, neither one of the twins knew any of the alphabet or could recognize their names on the board. They could not count and did not know their numbers. So thats what we worked on first. We learned numbers and letters, and it took time, but they learned their names and how to write them. First, middle and last. They learned to write their address and phone number. And to read simple words. All three together, learning the same things.
We had fun! We went to the library, and for walks. We went on trips to Milwaukee and Chicago, to see the museums and the Shedd Aquarium. They started to like learning again. We probably could have done more academic stuff, but we were so caught up with everything else that writing and reading kind of fell by the wayside most of the time. My Grandmother was sick and in the hospital and not expected to recover. She had fallen and broken her hip, and also had a heart attack. If they had been in school, they wouldn't have had the opportunity to spend time with her and say goodbye. A month later, Aunt Rose, my grandmother's sister, passed as well. Then Mike's grandfather was diagnosed with colon cancer. He was diagnosed in August, and by January he was gone. Again, if they were in school, they wouldn't have been able to spend as much time with him. They got to treasure the moments that they spent with grandpa before he left us.
By March of 2006, homeschooling had come to a standstill. We were dealing with our grief, and trying to get thru all the issues that having 3 deaths in 6 months will give you. So, we talked to the kids, and decided that putting them back in public school would be a good option for now. So we went to the district and had them tested for re-entry into the system. Wow that was fun, NOT!!! James should have been in 3rd grade, but since he had issues with his reading, we would do his work together. That meant that he could not read the parts of the test that they wanted him to. So when they decided where to place him, they put him in 1st grade instead of 3rd. The twins they stuck in Kinder, figuring since there was only a month and a half of school left they could get familiar with that and got to kinder the next year. Which of course meant that since James was supposed to be in 3rd, but was placed in 1st, and would re-do 1st the next year, it meant that he was 3 years behind the kids that he went to Kinder with. And the twins would have been 1st graders, but were placed in Kinder, and re-did Kinder that next year, putting them 2 years behind.
Gabe was the fun one to test. He was just turning 5, and went thru the Kinder screening, which made it quite clear that he had special needs. He then was sent for a whole slew of Special Ed testing, and we got a referral for Waisman Center for him as well. He had a whole stack of papers at the end. It told us that at 5, he functioned at an 18 month level in most areas with a ceiling (high) level of 30 months. It really hurt me finding just how far behind he was. I knew he had some delays, but comparing him to the twins, he seemed ok. His Dr. never mentioned being overly concerned to me, but while we were testing, he sent the school a form stating that he was showing "significant delays and concerns in all areas". It was definitely eye opening. He was placed in the Early Childhood program, making an exception for his age (because kids usually age out at 5, and go into a regular Kinder program, or and EC-K kinder class). So he was placed with a group of 3 and 4 year olds, even though his abilities were below most of theirs.
Gabe went to Waisman Center in October of 2006, missing school for 2 days for the evaluations, and on October 26, he was formally diagnosed autistic. His follow up appointment where we would see the speech pathologist and psych and all that and have his cognitive assessments done, was May of 2007, where he was diagnosed with a ton more issues. "No soft palate movement, insufficient closure of the velo-pharynx, highly nasal speech, hypotonia..." and of course, "Mild mental retardation with a full-scale IQ of 53."
Gabe has come a long way, as have the other kids. He still has a long way to go, and may never fully be independent, or live on his own. But that's just something that we will have to deal with when we get there.
Thats all for now, next post, an average day in our life.
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