Sunday, February 27, 2005

Autism education video clips

Just doing my part for the autism-palooza that NBC has been staging for the last week.

Saturday, February 26, 2005

Exerpt from new book about autism
written by Eustacia Cutler, Temple Grandin's mother.

When I learned that she had at long last published a book about Temple's early life I was like, "FINALLY!" The insights into the autistic world that Temple has offered in her books and lectures are invaluable, but as a mother I couldn't help but wonder...what was it like for the rest of the family? People on the spectrum are famously self-absorbed (hence the name of the disorder auto, which means "self" at it's Latin root) and Temple's autobiographical accounts are no exception, bless her. Anyway, this book just came out and the prologue alone has been so moving to me and Jimmy as well. I wanted to share a little bit of it because it may help some of ya'll. Bring you some comfort and encouragement or at the very least a sense of some kind of community. I know that we often feel so alone, despite the rising numbers that this epidemic claims. The disorder itself creates isolation, it just does. Anyway, here it is, from her book, and I just LOVE this title, "A Thorn in My Pocket:"

"I've learned how the parents of autistic children suffer from a loss of their own sense of self. We all know that a baby needs a mother to know that she is a baby, but, equally true is a mother needs a baby to know that she is a mother. When those first infant/mother resposes can't grow, a whole family identity is thrown out of kilter, I understand that far better now, from the vantage point of years than I could when I was young. I understand too how much parents long to be good parents. The purpose of my lectures is to find them and comfort them in their never ending battle with autism."Think of me as your future," I tell them. "I am where you will be many years from now, when you know how it all played out, when 'what will be' has turned into 'what was,' and you will have come to terms with it.'"Perhaps not in the way you thought you would, but you'll no longer feel trapped in the morass of angst and guilt. You will have resolved your child's future and your own. You'll know you've given full measure, and the measure you've given has never been pointless.""I offer you my story as a promise of that: an overall insight to carry with you as a talisman. And I promise that, iin the future to your surprise, your dreams will have changed and changed you."" I know that's not what you want.""What you want is a real talisman, a magic something you think I conjured up to coax Temple into joining life, as you hope your child will. There was no magic; there was just doing the best I could. That's the point; that's the talisman."Theodore Morrison, who knew Robert Frost well, said that Frost also came late to lecturing and was never entirely at ease with it."I always carry something in my pocket I can touch when I am talking," he told Morrison, "so I'll remember who I am. Lately it's been a thorn."

Wednesday, February 16, 2005

Good news! PTL!

In keeping with Jimmy and my conversation last night I spoke with Gioia, the girls' OT about Abby and she said that she is up for re-evaluation in March and believes that as long as we stayed on top of a few areas, that Abby could likely be released in April. YAY!
That means $165/week less. Though, adding speech will bump it back up some, but will be some less. If nothing else then hopefully at least less time at Lakewood every week. I am there four days a week as it stands now. My real prayer is that we could find a new home in the perfect ISD and get ST through the school, but first things first..
I am so proud of her!When we started she was so hypotonic and had intolerant. No appropriate play just lined things up. In some areas she was so low in that at her six month re-eval, despite having improved 300%, she was still deficient!
Anyway, all praise to the father and yay, yay, yay! I think I might be seeing some light at the end of the tunnel.
Thanks for your continued support and prayers.
I don't know where we'd be without them.

Tuesday, February 15, 2005

ya'll...I am just so tired

Jimmy came home yesterday and he was so rested and relaxed. He has not been well for a long time. He has Epstein-Barr and is always tired and rundown. I know I should feel bad for him, but frankly, it gets on my nerves sometimes. He is only off that one day/week and it is usually spent in bed with me trying to keep the girls away from him and quiet. Anyway, it was great to see him feeling so well. I really wanted to be sexy and wifey and stuff, but instead I just lost it. Ya'll, I am so tired. The last year and half (and really, since the girls were born) has been too much. Ya'll are all too familiar with our schedule, so I won't pound that into you again, but there is so much more to it than that. Everyday is so busy, so fraught with emotions and grief. Physically draining. Intellectually exhausting. Just everything. I fall so far short of what I think motherhood, a good wife/homemaker, friend, and Christian should be. Yesterday, I just started crying and could not stop. I could start again now. The grind began catching up to me around December and I cannot seem to get re-energized. I would give anything to quit my business, but even though our expenses have been slightly reduced since Emma Jean is enrolled in ABA only p/t and Abby has been released, we still need to come up with a lot of money every month for therapies.
Yesterday when Jimmy said, "No one has any idea what the last year has been like for us. No one could even imagine how hard it has been." The floodgate just opened and I just began weeping and weeping. I think I needed permission to really cry and really talk about how I feel. It's like I felt like I couldn't show him how exhausted I am, how much I need him, need a break. There is so much that is so hard everyday and no one can help us. Everyday begins with me feeling behind and is jammed with a hundred deadlines: from getting my clients' food out the door onetime and opening the twenty or so capsules and mixing up the daily concoction for Abby and now Beans too to then wrestling (and I do mean wrestling) that mixture into Abby and administering the injections or chelation. It is a battle every step of the way. Then it is just hurry, hurry the rest of the day. Traffic... omgosh. All those hours in the car listening to irritating children's music, refereeing (sp?), the in and out of the car, talking to therapist after therapist. Picking Beans up and dusting her off because she fell down AGAIN (I know it seems small, but ya'll have no idea how many times she falls down in the course of a day...dyspraxia...:: ). Then there is the cooking and not just for clients, that is one thing. It is Abby's dietary requirements on top of everything else. OMGOSH!!!!!. Heaven forbid there is a single convenience food that she can eat besides fritos. We spend so much time in the car and I have to plan for every little detail. God forbid we could eat a stinkin' french fry.
We have so much to be grateful and I am, I really am. But I am tired of reporting how grateful and blessed we are. I am just tired. I feel like I could just explode. I feel like I could start punching a punching bag and never stop. I can barely revel in our victories because there is always so much to do and I am so road weary from the hours, days, weeks, months, and years before. I long for quiet. I yearn to hold my children and stroke their faces. There is never enough time to enjoy them and we have worked so hard to be able to have moments like that. We never had them before. Abby wouldn't be held and there were always so many tantrums that I had to try to either prevent (impossible) or help somone out of, that just cuddling for cuddling's sake has rarely been an option. I see them growing up and this sweet time (now that we actually have sweet moments) is just disappearing before my eyes.
I am sorry to go on and on. I just have to "get all this out." I feel like I have no respite.
Anyway, I am really thankful for Jimmy. I was thanking God for him last night before I fell asleep and during the all night affair that passes for "sleep" around here (they are up so much throughout the night). I need him and I needed to be reminded and reassured that I was not in this alone and that he was a big enough man to handle my weakness.
God only knows where we would be without thoughts and prayers.
Thanks for reading. Emma Jean just woke up and needs to be held. I guess I'll go enjoy my one hour a day of "alone time" with her. LOL. It will be okay.
Everything will be okay.
  • International Day of Prayer for Autism & Asperger's Syndrome