Tuesday, January 24, 2012

The "A" Word: Part 2

The topper came in the Fall of 2009, I had joined a Mom's book club. Children came along and were expected to play independently while the Moms discussed the book. After an especially trying meeting, where the kids weren't being especially kind to my girls, and D1 reacted in her aggressive ways, I left early. That evening I was called by one of the Mom's and asked that I do not bring my girls to future meetings. With two years perspective this doesn't sound so terrible. But it was. I was hurt and angry. No, I was all out pissed. But also so incredibly sad. Being rejected by myself was one thing.  But to have my child rejected was a whole new, horrible feeling.  How could they not see how wonderful and special my little girl was?

I was devastated.  I began to withdrawal both myself and my girls from many social opportunities.  I was even hesitant to spend time with close friends who seemed to understand the challenges I faced with my D1.  I was so afraid of another rejection, or another incident of D1 behaving badly or hurting another child.  I believed it would drive me straight over the edge.

I honestly didn't know what to do. So I took a step that was so incredibly scary to me. I called an Autism resource and requested an evaluation. My heart was in my stomach. As I spoke with the receptionist I began to cry. She reassured me that it would be ok. That she had a son with autism, and really it was manageable. That made me cry even more.

It just brought me too far back. Back to my own childhood, my own difficulties. Too shy, too awkward. Which made making friends very hard, and made me a huge target for teasing and bullying. One of my number one wishes for my kids was not that they would be straight A students or star athletes. I simply wanted them to have it a little easier than I did. I wanted them to be outgoing, to have lots of friends and make great childhood memories. I wanted them to never have to play alone during recess, to never  not know who they could sit with at lunchtime. All the terrible lonely memories of my childhood, the ones that left me sad still, so many years later. I could not handle my baby girl going through the same thing.  D1 was creative, funny, and so incredibly smart.  The thought of others not valuing these attributes as much as I did was heart breaking.

Of course the appointment we made was not immediate.  As I now know, most  autism providers have  notoriously long wait lists.  And while a month seemed a long time to wait, it was actually incredibly short compared to other providers wait lists.  Once the appointment rolled around I was scared.  Questioning myself once again.  Maybe I was over-reacting.  She just had some quirks and was a little behind her age socially.  All kids have areas they struggle with.  Was I dragging her to some evaluation unneccessarily?  Wasting everyone's time?

But I was so incredibly glad I went.  The therapist who conducted the evaluation was kind, non-judgemental and understanding.  After talking with her for an extensive amount of time and giving her the evaluations I had filled out ahead of time, we were told to return in a week.  While I went to the initial evaluation alone, hubby came with me for the results meeting.  At this point, hubby was even more skeptic than I.  He seemed to lean more on her issues being more of a result of our parenting.  Bringing him along to this appointment was very important to me to get us on the same page.

The therapist began referring to D1 as a "fence sitter".  She was borderline.  Definitely had attributes of ADHD.  But also many attributes of aspergers.  She explained to us that the evaluations were hard to do on a young girl.  That the tests were tilted towards the more typical aspie - a boy of age 7 or 8.   She told us that very often girls do not get diagnosed with Aspergers till about fourth grade - when the social structure of school becomes much more complicated.

I know many people are relieved when they finally get their child's diagnosis.  The years of wondering and not knowing what to do are done.  But I did not feel that way.  I was grieving and scared.  What kind of difficulties would she have to over come in the future?  What kind of family life would we have if we were constantly taking D1 to all the therapies that were suggested for her?

As that winter began, I went fully into myself and kept my girls close.  Looking back, I remember it as a very dark and lonely winter.  A winter full of waiting.  At the evaluators suggestions, I tried to find social skill groups, speech and behavioral therapies.  But all of these required more waiting lists, initial evaluations and placements with the right therapists and groups.  Waiting.

~ part 3 of this series will be out next week ~


kimbop said...

Hi, thanks for getting post #2 up -although I remember this time so vividly through you I could have written parts of it myself...

Mariska said...

Thanks so much for writing this, Jen. I'm eager to read part 3. Much love to you and your girls.