Teacher Conference: Progress Report

Yesterday I spent an hour and a half with James' teacher, talking about his work, personality, and ideas for improvement. I feel so lucky, to be working with a teacher who listens to me, even encourages me, as I talk and talk about James. She talked about him almost as much as I did. There are 23 other kiddos in that class. Yikes! Yes, I am appreciative.

But wait -- there's more, and it's awesome.

To quote from the report card: "He has made so much progress since last year ... James has a terrific memory and works well in his Reading Group. He is not far from the grade level standard this trimester."

I wanted to jump up, punch the air, and dance around the portable room like a loon. YESSSSS!!!! I've worried for so many years; remember so well that long time when I didn't know what James' voice would sound like, or if he'd ever talk. Had a meltdown at being told be he tested as mentally retarded and that I should prepare myself earlier rather than later to face this situation. Being scared that my sunny little guy would get lost in the big wide world of checkboxes and categories that are set to Normal and Not Normal.

He's reading. He's writing. He's interacting with his class. He does his homework and he gamely gives math a shot at night with me. And he's almost there.

So sweet. So relieved for him.

So thankful.

It's going to always be up and down. Math will remain an interesting challenge for quite a while (maybe always). We are going to try a drawing/writing journal and addition/subtraction flash cards. I am so happy, because even though we are getting lots of help, James is the one making this happen. And his future is getting brighter.
 

I Think He's Left, But Is That Right?

How do we determine hand dominance? It's a question about James that's been bugging me for almost a year. His sister was pretty easy to determine as a right-handed and footed person because she consistently used the right side of her body to write, draw, kick, and throw. James, in keeping with the mysterious/super powers aspect of his personality, is keeping the whole dominant hand card game close to his chest (with both hands).

Last year, when he had better mastery of eating with utensils and was starting to use markers and paint brushes, I started watching his to see which hand he used. A lot of times it was his left. Then he started to use his right. I know that many kids do this, but by a certain age, children need to have a dominant hand to support. I started discussions with his preschool teacher, who recommended a wait-and-see approach, as well as a helpful suggestion of not handing him something, but rather putting it on the table in between his left and right hand. James continued to experiment, but then picked it up with his left and transferred to his right.

Through this Spring and Summer, he continued to throw consistently with his left hand, kick with his left foot. He also used his left fingers to draw in the sand and WRITE HIS NAME IN THE CAPRET (this, when his teacher and O/T said he could not write and needed to concentrate on making circles and crosses). Yet for table activities he usually picked up with his left and transferred to his right.

I am not trying to discount the knowledge and experience of James' preschool teacher or O/T (the same O/T as in his preschool), but I continue to push the question of hand dominance with James. There are many left-handed people in my Mom's side of the family, and my uncle has shared stories about being punished when using his left hand and being made to use his right (which he hated and now no longer does). My mother taught SpEd for many years and I remember her talking about how not determining hand-eye-foot dominance can make some learning disabilities harder to overcome. In short: I worry that James' development will be negatively impacted by this protracted waffling about which is his dominant hand.

I am now being told that "some people" are ambidextrous, which is "fine". That "some people" don't settle on a dominant hand "for a while". That "some people" have a dominant left foot and a dominant right hand. This adds to my concern, because while I am sure this is fine and dandy for many of the "some people", this is our James, and I think we need to start supporting the appropriate hand NOW, because he is just getting this school thang, is absolutely in love with it, and does better when he builds consistently on a routine.

I've watched him get excited about playing a game with other kids in a room full of beach balls, just waiting to be kicked. I've seen how long it takes his brain to process (1) the ball (2) the activity (3) triangulation of said ball in regards to his body (4) figuring out where his legs, then feet are (5) shifting from one foot to another to find his starting foot and then (6) brace on one foot and start the kick with the other. Somewhere in between steps 4 and 6, I watch another kid zoom in and kick his ball out from under his foot. Yes, that's a game; he had fun and practiced; it won't always be like that. I want this to limit this happening with him at school, learning-wise.

I'm his mom and I worry. It goes with the job. If anyone has any helpful ideas, I'd love to hear them.

Calling for an Assist

I just made a call to the Swain Center, to see about getting another evaluation for James. Right after his initial assessment by the North Bay Regional Center, he started receiving treatment there twice a week with a speech therapist. After age 3, we continued to visit on a weekly basis, when school was out of session, as part of our Respite Care.

The more I see of kids and services, the luckier I feel that he got such good help up front. His therapist kept at him, and didn't let James get away with much. This is tough, because he knows how to use his charm and cute looks. She knew he needed to be pushed and found ways to successfully challenge him. Even when he was tired and cranky from going to therapy instead of napping, she got him to accomplish just a little bit more.

When it came time for his first school IEP, she helped me set better goals for him. Because the school folks were setting him goals he'd already achieved (they had not worked with him at that point), and I am not a speech specialist, this woman's help was invaluable to us. I am hoping to have her input to bring with me for a meeting with James' Kinder Team after school starts.

Perhaps I should have done this earlier, but I hate overscheduling James. He's been progressing so well with social and speech development this summer -- the sessions at the gym's Kids' Club with older kids, participating in the city's Summer Camp program, and hanging out with older cousins at the beach all helped him take advantage of some great modeling to imitate and build upon.

Now, however, I am reliving the last part of his preschool year, and the disappointment with the speech services and goals (or lack thereof). I know Kindergarten will be a whirlwind of activity and excitement. I'd REALLY like him to succeed, so am hoping that by having the Swain Center's input, we'll be off to another good beginning.

How We Get From Here to There

How do I determine what is the best option/plan of action for James? Well, it's kind of like this:

Moving forward in time and roadways. Looking ahead, to the side, with one eye to the past. Trying to spot and analyze all the options before taking action. Hind sight is 20/20, and objects in mirror are closer than they appear.

All the while I am trying to safely transport us all from Point A to Point B, without crashing and avoiding things that might crash us (I wonder what the erratic blue van driver represents in this story, BTW, but I digress ...). The gas tank must be reasonably full, an itinerary tentatively mapped, and all seat belts must be fastened. Safety check ... and check, check, check!

Can we change course? Yes. Are their traffic jams? Inescapably. Do we exit the freeway? From time to time yes; sometimes, we even make a U-turn. Are there surprises? Oh yeah. Do I check my mirrors before making a lane change. Yes - ALWAYS!!!

The view at times can be breathtaking. The journey whitens my hair from time to time. The responsibility is heavy. The love is what makes it worthwhile.

While sometimes the process is tentative, it sure beats using a Magic 8 Ball, or tamely following the path of least resistance.

IEP on the Horizon

We received notice that James' IEP will be later this month -- moved up a month from last year. This is partly due in equal shares to his progress and the fact that he'll be starting Kindergarten next year. *Sniff*

So he will be tested and reassessed. Right now, his teacher and I are looking at the fact that he is very easily distracted. Hmmmmm. Lots to think about and ponder. Ponder, ponder, ponder.

Nope, nuthin' yet!

Ahead of a Storm

I was catching up a friend on the kids and summer so far. Isn't it funny how writing a letter can put things into perspective for you?

I was gushing about the progress both kids have made over the past few months. That was fun, because this is a cheering section kind of friend. You know, the one that cheers you on when the rest of the world thinks you're nuts, and vice versa -- because you know & like each other so well?

Then I started on what I was doing, and realized that lately I am getting more involved with programs from which James has benefitted. Because they are in serious need of help and parental support. Despite best efforts, the state's budgeters have chosen to make themselves look good while in office at the expense of future generations.

Many people will be hurting and some good things were saved. Myself, I have tunnel vision, and it's called Education & Special Needs. We have paid into the system for decades and this is what our kids need Right Now.

Next year classroom sizes at my daughter's school will be 22 students per class with no class aide (up from 20 students per classroom and again no aides) (my mother taught for almost 40 years; what I have to say about this fiasco is a whole other post). Early Start funding has been slashed.

Here is the chilling thing, to me:
"The additional cuts Schwarzenegger made Tuesday also include $37.5 million from the In-Home Supportive Services program, $50 million from the Early Start program to screen children for developmental disabilities, and more than $6 million in cuts from programs for the aging." (link to article)

Early Start is what saved our sanity and gave James a crucial boost when we first were figuring out that Something Was Wrong. Our North Bay Regional Center (NBRC) descended upon us and put in a referral for a formal assessment for our son. While we waited 5 months for the appointment, they made services available to us that (at the time) we had no idea James needed.

Since then, I have heard horror stories of parents fighting for almost a year to get these services, as well as the immense benefits of receiving early intervention before the age of 3, due to how the brain grows and absorbs information.
" ... the earlier the diagnosis of ASD is made, the earlier needed interventions can begin. Evidence over the last 15 years indicates that intensive early intervention in optimal educational settings for at least 2 years during the preschool years results in improved outcomes in most young children with ASD." (link to source)

I have a hard time believing that knowing what they do now, the governor and legislators have cut funding to an effective program that can have its best impact on a person's life, as well as that of their family.

James was first assessed by his pediatrician at 18 months, and we were told he was in the range of normal. I was told that again at 2 years, but I insisted on a referral being called in. He was first assessed by the NBRC at age 2 years, 4 months. He was almost 3 by the time he was formally diagnosed with Autistic Disorder, and at a higher level than any of his therapists suspected. His therapist didn't know if he'd be verbal or non-verbal.

Flash forward to a year after his initial NBRC assessment. His preschool teacher commented she had never seen a child progress so quickly in so short a time.

This is why I get shivers reading about our current budget crisis. I feel like we are just barely outrunning a big storm. But what about the others who are caught up in it now? And will not receive the services they should?

I see misery and sadness of families, frustration from the kids, and costs to us all about 15 years down the road that are, in a word SHAMEFUL.

Many Hands Make Light Work

This morning, James was trying to talk with me. To him, I am sure he was talking in words. What I heard was babbling, but with a purpose. He wanted me to get down his special Flash Cards from his speech therapist.

He sat down expectatly and picked out the cards delicately, with one thumb and finger and shouted out the word on his own, most of the time. What a difference a year makes!

One of the biggest reasons I asked for a referral for James was because his babbling had stopped at about 13 months (right around when he started trying to walk, I later realized) and by 2 years his biggest means of communication were screaming and biting. This was very much out of character for James, who is one of the happiest, sunniest kids I have had the pleasure to know.

I had to insist with his pediatrician for the referral in end of February/early March 2007. In April 2007, a Care Coordinator from North Bay Regional came out to assess our son. She found significant developmental delays and ended up writing purchase orders for services from the following clinics: Early Learning Institute, The Swain Center, and Redwood Pediatric Therapy Associates. She also put James on the waiting list for evaluation at the Collaborative Autism Diagnostic (CAD) Clinic. It would be five months before he was seen at the CAD Clinic, and James was very fortunate to begin receiving services in May.