"Defeat is simply a signal to press onward" - Helen Keller

I have been feeling somewhat defeated lately. Defeated by this monster that has a hold on my son.

We were doing well for a couple of weeks (relatively speaking) but we found out that one of Boo's meds was causing some problems in his blood so we are weaning him off of it. We also found out that it may not be until the summer that Boo gets into the special program. So once again we're in a bit of a holding pattern. I'm ok with waiting til summer but in the meantime I feel like I'm reinventing the wheel in terms of helping Boo.

I've been reading, researching and talking with other parents of children with FASD and ASD. I've been able to consult with several professionals working with FASD kids and am more determined than ever to be that loud outspoken advocate mom who wants to educate EVERYONE on FASD. I recently read this interview with Dr. Sterling Clarren who is a world renowned expert on FASD. It's a great read!
Dr. Clarren points out that FASD is not being diagnosed properly because many children (like mine) do not have the facial features that go along with classic FAS. However, as research is beginning to show, the brain can be affected at any point in pregnancy from beginning to end. In Boo's case, it is likely his birth mother drank throughout her entire pregnancy. His brain (from the tests that have been done on him so far) shows huge deficits in his executive functioning (the frontal lobe of the brain). This affects his ability to self regulate, to integrate sensory stimuli, to reason, to not act on impulse, memory, and the list goes on.
To put it in perspective. Boo is now five and it has taken us nearly one month to teach him one letter. He is also just beginning to really remember the names of his colors. This is a HUGE milestone for him. We are constantly learning new ways to teach/help him. I am learning that there are many other mothers of children with FASD (and the other dx's that follow) out there. I am both saddened and comforted by the stories of these moms. It helps to know you're not alone. It also makes us more fired up and determined to help our children. Why do you think FASD is not more well known? It is THE leading cause of mental retardation in the US. Any Idea$?
" The alcohol industry profits from children and has no economic interest to reduce underage drinking. Underage drinking accounts for $22.5 billion of the total $116.2 billion spent by consumers on alcoholic beverages" From THIS article.

Ok, I'm stepping off of my "mama bear" pedestal now. I need to get to bed because Boo has decided that waking up at 6am is a blast! Thanks for reading!

"If you've met one child with Autism, you've met one child with Autism"

I frequently post on a special needs board where there are many mothers of children with all different challenges.
Many of these children are on the spectrum. However, while many of them have Autism and share some basic characteristics of ASD, the mothers there realize that no two children with Autism are alike.
Someone recently told me that each child with Autism has their own "recipe". I thought this was a brilliant way to describe it.
There are many professionals who have dismissed parent's concerns for their child because the child's challenges didn't meet the stereotypical case of Autism.
I can't tell you how much this frustrates me.
Here are some "myths" about Autism that I've heard from pediatricians, neurologists and psychologists which turned out all to be false. They are not fully educated in diagnosing Autism. If you ever here these things, run! Go find a developmental ped. or a psychiatrist/psychologist SPECIALIZING in diagnosing Autism.

Myth #1 ALL Children with Autism don't make eye contact
Myth # 2 ALL Children with Autism aren't socially engaging
Myth #3 ALL Children with Autism are savants
Myth #4 ALL Children with Autism can't play make believe or pretend
Myth #5 All Children with Autism can't hold it together in social settings without melting down

The thing is, Autism is a spectrum disorder. This means there is a wide range of behaviors/capabilities/etc. No two children with Autism are the same. Many have sensory issues, behavioral issues, attention issues, communication issues, social issues, etc but none of these things necessarily look the same in all children.

Here is a link to a great site with TONS of info on Autism and neurodiversity :) Enjoy!
http://www.neurodiversity.com/main.html