Monday, January 23, 2017

Rory's Journey to the Spectrum

After months of waiting we finally have a diagnoses of what is plaguing Rory. He has Severe Autism Level 2. To be severe you need a minimum score of 14, he scored a 21. I know I shouldn't be so shocked. I knew in my gut he had autism, I was expecting him to be mild, maybe moderate. But severe? That threw me for a loop! 

I won't lie I've shed many tears and am a little heart-broken since I've gotten the news. Heidi Anne was inconsolable after she heard the results. Her first words were "You mean he'll never say I love you to me?" Followed by "Will people be mean to my brother or treat him like he's stupid? Because he's NOT!"     
Despite these sad feelings, I'm confident in the results. We took numerous surveys, had three different assessments, with three different people, on three different days. Which had a total of 8 hours of observation of Rory with and without us, in various situations. 

Being non-verbal is one of the key things that pushed him from moderate to severe. Another element is his headbanging and biting of his hands that he does when overstimulated. Nothing can prepare you to see your child bang their head against a wall, table, or floor repeatedly, and you can't do a thing to stop it. Right now I can pick him up, but he'll still try to bang his head in the air or headbutt me. I know a day will come when he'll be to big for me to pick him up. 

Right now Rory's getting as much help as we can get him based on where we live. Which makes the need to move to a bigger area more imperative then ever. We went ahead and got him on a few waiting lists for ABA Therapy in areas of Utah we hope to move to. 
IF he gets accepted before we move, I'm looking at 2-3 sessions a week for 3-5 hours per session (with Anastasia in tow). Once we move we can get him into private speech therapy, in addition to the 12-15 hours of ABA therapy, and the local Early Intervention's services. SO we're looking at over 20 hours a week of various therapies for the next few years. That will be my part time job until Rowan starts school.   

While I don't question the diagnoses, we're all still reeling from the gravity of it all. All my hopes of a "normal childhood" for him have gone up in smoke. But I have a feeling something much better then I could imagine lays down the road for him, I just have to help him get there.