No Grieving in This Autism House

I was reading articles online and came across a piece written by Susan Walton, regarding Autism in the family and the grieving process. In short, it is a rallying cry to view a child's diagnosis in a more positive light, rather than an occasion to grieve. Personally, I agree.

James jumping on his toes --
he sees the spinning rainbow
wheel outside.

I remember the time leading up to James' diagnosis as a haze of anxiety (something wasn't right), stress (job and family worries), and extreme frustration. I'd been worrying why I hadn't seen the big developmental jump at 18 months that I had with his sister; he still was not talking; he was beginning to scream instead, and even bite. His daycare, while concerning me about an overall lack of safety, did step up and tell me that his behaviour matched some of the Red Flags of Autism and that we should have him checked. His pediatrician then actually told me that James could not be autistic. "He can't be, he looks you in the eye," he insisted. True story. I had to insist that he call in a referral. Parents -- you can insist. Please don't hesitate to do it to help your kids.

So to hear from the Regional Center caseworker that there were indeed some developmental delays was not completely unexpected; it was kind of the bad news I'd been waiting to hear. I immediately requested and took 6 months of Family Medical Leave and plunged into HR hell with my employer's payroll department. Our family life was in limbo while we ferried James to five therapy sessions and a social playgroup weekly, waited five months to get get into the CAD Clinic for an official diagnosis of: Autistic Spectrum Disorder.

He's a sweetie, but look
at how he's holding his
hands & fingers ...

My husband and I were stunned. along with the rest of our family. Now what? What does that mean? Will our son ever talk? Will we ever feel the connection to who he is? How do we make sure he gets the help he needs to develop? These were some of the questions whirling in my head. Then I got a letter from our preschool, notifying me that, per paperwork submitted when big sister transitioned out, a place had been saved for James and they were looking forward to having him start in January, after his 3rd birthday.

By this time I knew James would not benefit from this program, even though we loved the staff and it was THE preschool where most parents wanted to send their kids.  I had to call them back and explain that James would not be coming. And why. Also, that's he'd be instead attending the Special Needs Preschool through the public schools system.

The staff was wonderfully sympathetic. Almost too much. Several advised me to grieve for "the death of a dream." That's when I pulled up, so to speak, and thought more clearly. Wait a minute. Why should I be grieving? At least I knew what we were dealing with now. And from reading about the range of impairments that could happen, I knew that James was lucky because he was healthy and liked people. He did not have to take any meds. There was a lot to be happy about, it seemed.

Since then, I have heard the advice and questions about grief relating to life with Autism. I still don't get why I should be grieving. We have our son. He is healthy and making progress, not suffering from something terminal. We have our moments of disappointment, semi-despair, and frustration ... but we have even more times of love, fun, and adventure.

Normal does not guarantee a happy life. Since we started on this journey, I have learned a lot about wanting what I have. One of the biggest gifts is appreciating how happy our sunny James is. I cannot count the times he's put a smile on my face with his sweet and mischievous ways. We celebrate major breakthroughs that may look like simple things and it carries over into our overall accomplishments as a family. So, no grieving over that diagnosis in this Autism house.

SOOC: Moving at His Own Speed

James loves getting to do his Kids on the Move class every week. I think it has actually helped him be more confident with his body. I got to watch him this week and was struck again by how James has his own way of doing things.

While he may not be hopping and leaping like the others, giggling and chattering with them, he is there and participating at his own pace. He is smiling and taking things in. Occasionally, he tries something different; something he's never done before. If he doesn't do it like the others or perfectly, that's okay.

James seems to be the type of person who enjoys the journey, moving at his own speed. What is so wrong with that? He is growing, doing, and happy. It's a refreshing change of pace from testing, quotas, and checklists.

Even though ther eis no post yet this week on The Slurping Life, you can still visit Melody and check out SOOC Saturday/Sunday entries past & present. No cropping or fixing -- it's life, straight out of the camera.





  

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.

Growing Pains

James is still going through what I hope is a transitional phase. He has been using less words over the past two weeks or so, after a small explosion in his vocabulary. His sleeping patterns are messed up and instead of sleeping at night, I can hear a Party of One in his room. This makes working with his SHAPE asst. the next afternoon extremely challenging. He also is doing more screaming and face hitting, which I try to counter with asking "What do you want, James?" and "No hitting," followed by time-outs.

I am trying to look on the bright side. My daughter did similar things before leaping forward developmentally. James has largely been sunny, serene ... and about a year "behind" (developmentally). He still loves going to school and taking the bus. He loves looking at books, the Cars trailers, and singing. His sister can get him to play with toy fish and cars. He loves to do his Flash cards with her. I imagine that it must be pretty frustrating to start to realize all the things you could do ... and then realize there are some things your fingers just can't do right away, or that you are trying your darndest to communicate with people, and it doesn't work. I'd get really tired and cranky too.

So then I try and find ways he can do more things with us, and make sure I make time to just hold him and tell him I love him.