Nov 17, 2011

Well now we know.

On Wednesday we went to Autism SA for EJ's ASD assesment. Yeah... well... that wasn't a fun experience let me tell you. It's tough sitting in the interview room being peppered with questions, that were mentally draining. I can't remember what EJ did at 9 months old to ask me for stuff!! LOL EJ spent the morning playing with another specialist in the next room while she watched him and took notes on his behaviours towards her and to play.
EJ was diagnosed with Aspergers - quite convincingly. His social skills are so lacking, even I was surprised at his anti-social behaviour towards strangers. He didn't engage, he didn't look at the woman, he got upset when she tried to play with him or talk to him. He only spoke to her if it benefited him, or he was interested in the topic. It was such a shock to hear my son being described as egocentric. In other words... all that is important to him, is himself and what HE likes. That's really tough to swallow.
It was also very devastating to hear that this is a life long battle for him, and he will always struggle with it. He will manage it, and if we get him help in the right areas he will do a lot better.

So... we now have to toss aside SPD, and start from scratch. New therapies with different approaches and new therapists - along with more to throw into my very full plate. I've deferred from Uni, because my health hasn't been very good, and now I am glad because I don't think I could balance uni with helping my little guy manage ASD. If I feel myself begin to topple, I will be ditching other stuff as well. I'm afraid it's going to have to be THIS family first, other people later.

How do I feel? Numb. Sad. Like my whole world has been turned upside down and I'm left to try and make sense of everything. Happy - because he's going to be getting the help that he needs and we are going to receive help as well, instead of trying to understand all of this alone. Joyful, because my son is quirky, unusual, and has "a higher order" of thinking (so I've heard it described). Blessed, because I live in a state where they have services coming out it's ears and I won't be on mega-waiting lists for anything. Supported, because I have friends I can turn to who have ASD kids themselves, and they are willing to walk with me and offer me their hand while I try and get my bearings. So many different feelings!!

On the upside.... it's best that I am EJ's mother.... because I'm not the kind of "sit back and be passive about it" kind of woman. I will be his advocate, and I will fight tooth and nail for him to have every opportunity to succeed in life, no matter what issues he has. He may have a diagnosis, but look at him!! He's still the cheeky, adorable, funny, quirky little guy he was last week.  And I love him to pieces. He is my flesh and blood, born from my body (destroyed my body too!!) and ASD will never change how I feel about him!


1 comment:

Renata said...

((HUGS)) One of my friends has a son with Aspergers & I know a tiny amount of what you're going through by watching her. Zai & her son are actually good friends & he's a very smart boy & is doing wonderfully since she began homeschooling him (he really struggled at various schools before that). You're doing a wonderful job & it's not an accident that God has placed you as this precious boy's mother. Trust in Him & lean on Him through these difficult times & always remember that your boy is precious no matter what!
Love to you
Renata XO