December 12, 2011

sadly behind!

SO much has happened in this journey and I have been busy on the FB support page and new Advocacy page I am running that I forget to keep this journal going. I will fill in the blanks, short stories.

I also need to figure out how we get just a paragraph to show up on the wall and then you can click to "see more" like on FB.. anyone know how to do that? I have checked all the settings but can't figure it out! =)

April 28, 2011

It's not Spectrum, but other diagnoses added and still more testing to be done!

Trying to wrap your head around a slew of testing that didn't yield accurate results is pretty difficult. The bitter-sweet diagnoses came down today. I call it that because no parent wants to hear "Your child has Autism" but no parent wants to hear "He isn't Autistic, but unfortunately some of the multi things he does have don't have exact names.

Let's start with difinitives: Zachary is highly intelligent but social/ emotionally delayed. Intelligence is for facts, not responses so these two conflict on a regular basis for him. He scored at risk for every test, except the intelligence IQ test. This led to their decisions below. 1) He is not Autism Spectrum, however the multiple results below account for behavior AND his genetic duplication (he so graciously received from his biological father) has research that supports behavioral and psychiatric issues. This clouded her decisions (of course we knew this already).

She is clear on these however:
Mood Disorder - NOS (Childhood Bipolar)

Sensory Integration Disorder

Executive Functioning Disorder

Impulse Control Disorder

Oppositional Defiance Disorder (Suspected in 2008 - to be monitored still)

On top of these hard to swallow diagnoses, we have 2 further tests to be done - Functional Analysis and Functional Behavioral Assessment.

We also need to follow up with a Neurologist (Through the Ladders program at MGH - which I have already scheduled for July)

It's a bitter sweet moment right now. On the one hand I am praising God my child does not have Autism Spectrum but the sad state is that we lack the resources and supports needed for children with these "Invisible disabilities". Instead, the school and state will lump him into "behavior problem".

The tester was ADAMANT in agreeing with the previous medical professionals and hospitals that it is imperative Zachary be placed in a Therapeutic school with life/social/emotional and community based training. He should not be mainstreamed into a large classroom and if they continue to force him, he will be hospitalized again.

The silver lining is tomorrow is my first day of training to become an Educational Advocate at the Federation of Children with Special Needs - so that soon I will be fighting for children like my son.

March 7, 2011

Aspergers testing coming in April finally!

I will fill in the gaps, life is just so crazy I have no time to sit and journal. But it is SO important. We need to journal all our children's lives so that we can help others find their way through the crazy map!

For most of us, there is no handbook, and there is no one to hold our hands. It's floundering out there in the sea of NO resources and help.