Wednesday, August 27, 2008

Our Basic Day...

This is from my other blog, "Our Adventures In Autism" that I can't access because the email I used doesn't exist anymore. It recounts how our days usually go, at least as of this last school year.

A Bubba Kind Of Day

So heres how a normal day (school day) goes with Bubba.
6am: Wake from my dead sleep and hit the snooze, Bubba was up at 2, and is sleeping soundly beside me.
6:15 - I'm up, and getting the other kids moving. James and Caitlin dress themselves. I dress Caleb, and send him to the living room to put his shoes on. Time to tackle the Gabe (aka Bubba).
6:30 - I half carry, half drag Bubba down the stairs, and deposit him on the couch. Then comes the chore of dressing. First, off comes the pull-up. His teacher insists that he wear undies to school, which is fine, because for some odd reason, he accepts potty at school as part of the routine now (go figure with like 2 months of school left!). Then undies go on, then socks, and yes it has to be the same way everyday, and heaven forbid I forget and do socks first, or shirt! Next is shirt, then pants, then shoes. Give Caleb his meds, and Bubba a cereal bar. James and Caitlin are finally dressed, so I motivate them to get breakfast.
7:15 - I send James out to start the van so it will be warm when we go out.
7:30 - Time to leave for school(s). Drop James, Caleb and Caitlin at their school, and then head out to Bubba's. Bubba goes to a different school because the one that the other kids go to doesn't have special ed classes.
7:45 - Finally get Bubba out of the van, after listening to him tantrum for the last 15 plus minutes and coaxing and practically begging for him to calm down, mommy's right here. We walk up to the school, and wait where he lines up.
8 am - The bell rings, and I hope to God that he will go in without me, but I know it's not gonna happen without a fight. And I'm right! So in we go, and I help him off with his coat and things, and hand him his stuff to hang up. As he goes in the coat room, I wave to the teacher and she nods and smiles as I hurry out the door. I hit the outer door, and hear "where mommy? where mommy go?"
8:10 - It usually takes about 10 minutes for me to escape, because he knows, or seems to know, what's going to happen next. But the funny part is, he always, ALWAYS, does the exact same thing, down to how slowly he walks. It's like he choreographs it exactly, down to the step. Amazing!
So I do all my running, my visiting and stuff. And before I know it, it's 2:30 and time to head to Bubba's school to pick him up first. (Gotta get there early to find a parking spot!!)
2:51 - School is out! Herd him to the van. Wrestle him into his carseat, and hurry to buckle him before he can escape.
Then we rush the 4+ blocks to pick up the other kids.
Home by 3:15, and we start homework.
Dinner around 6-ish.
7:30 - James and the other kids get out their clothes for school, and I approve or deny what they want to wear (no you may not wear shorts in 10 degree weather!). I get out Bubba's clothes. And in between all this, try to potty him every 1/2 hr to an hour.
8:30 - Bedtime, easier said than done. Put James, Caleb, and Caitlin to bed. Bubba hangs out with me on the couch, no TV, til he passes out, which is usually around 9:30-10:00. Then off to bed for me about 11 or so, and wake again at 2-ish when he comes upstairs.

At least he's regular!

This year though, they are all going to the same school! Only one school to stop at, one place to unload and re-load. One school to expect phone calls from. One open house night to go to. Wow I may not know what to do with all that extra time, might have to take up a hobby.

When They Were Little.....

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.

Tuesday, August 26, 2008

Where to Begin....

If someone had told me when I was younger that I'd have four kids and be married 11 years by
the time I turned 30, I would have said they were crazy. But here I am, almost 30, four kids and a hubby.
If anyone had told me that autism would be involved in my everyday life, and that developmental delays, IEP's and all that go with them would be normal for me, I'd also have said they were nuts. But again, here I am, two of my boys have autism, one also has mental retardation and other issues. Three of the four have IEP's , all are in mainstream classes, some with support, some without.

It's been a long road, and it stretches far ahead. My oldest, James, was born seven months after we married(no thats not why we married*grin*). He weighed in at 8lbs 10.5 oz, and he developed right on schedule, and the only concern we had was that his lead was elevated at a year old. We had the Dr. see him right away and within 6 months his lead was back to normal. When he was 19 months, we had the twins.

Caleb weighed in at 5lbs 15oz, and Caitlin weighed in at 5lbs 1oz. They were healthy and good size, and Caitlin only had to be under the warming lights and have a little extra oxygen for the first few hours. Caleb had torticollis, so we were showed how to position him, and given gentle stretching exercises to help with the tightness in his neck.

The twins both had developmental delays, which everyone kept telling me was normal for twins. They started therapy with the Birth-to-3 program at 7 months, and had physical, occupational and speech therapy. It was slow going with the therapy. Caitlin first sat unassisted at 12 months, and finally walked at 22 months. Caleb was a little quicker, sitting at 10 months and walking at 19 months.

About the time that Caitlin was taking her first steps, baby #4 was here. Gabriel weighed in at 7lbs 5oz. Caitlin took her first steps three days before her baby brother was born. He was a different kind of baby, always wanting to nurse, and be held, and he NEVER seemed to sleep more than a half hour at a time. Little did I know, this would be important later.

Caleb was always different, and was diagnosed as autistic in March 2002, and diagnosed with ADHD in July of 2004. He finally potty trained at about 6 years old, though even now, he still has at least 1 accident a week. We'd had concerns about Gabriel as well, as he showed many of the same signs as Caleb, and October 26, 2006 he was diagnosed as autistic as well. Then another blow, he was diagnosed as mildly mentally retarded, with an IQ of about 53. He still isn't potty trained as of this point, but does try now, and wears underwear most of the day. It's a big thing for him, going from pull-ups full time, to one or two accidents a day!
Caitlin has been a puzzle for the most part, she grows very slowly, and the Dr's don't know why. She's had test after test, all come back normal. She's a year and a half delayed in bone growth, and at 9 years old is about the size of the average 6-7 year old. She is a little slow, academically wise, and is going into 2nd grade instead of 3rd or 4th like her age-mates. For the longest time, she wouldn't eat, and even now has textures that she can't tolerate. She's been diagnosed as failure to thrive, small for gestational age, constitutional growth delay, and bone growth delay.
Caleb is also going into the 2nd grade, but with the problems he has, he needs a lot more support than she, and is farther behind socially as well. Caitlin is reading at a mid- to late first grade level, where Caleb is reading at a mid- to late kindergarten level. Quite a difference!
James is going into 3rd grade, he should be going into 5th, but he is also behind in reading skills, and reads at grade-level rather than at age-level.

Gabe is a whole other ball of wax. He spent a year in a regular Early Childhood class, and then a year in Early Childhood-Kinder class. His current level of performance puts him at about an early Preschool (3-4yo, depending on the area) level. But, that is up from his initial evaluation, which had him at an 18-30 month level, depending on the area. He will be in a split reg-ed and spec-ed class, with the instruction tailored to his level.

Both the boys still have speech, and Gabe also has PT and OT.

I guess that's the beginning, next post to follow when I have a few free minutes when the kids are sleeping.