The long road to a real diagnosis

I was blown away last week. Rachel was diagnosed with Autism...or the correct way to say it now, I guess is an Autism Spectrum Disorder. She also has SPD and a language delay. I was a little bit surprised with the diagnosis of Autism, but at the same time, I was relieved.

This diagnosis doesn't change who Rachel is. She is still the same precious little girl that she was last week before the diagnosis. It's not that I'm happy she has Autism. I don't think any mother would be. I'm just happy and thankful that after all we have been through, she finally has a diagnosis that will get her services that she needs. I've suspected for years that she was on the spectrum. We had her evaluated two years ago and she wasn't diagnosed. However, in the last year or so, her symptoms have become much more relevant.

I'm so grateful for her therapists suggested that we get Rachel evaluated again. Even though Kaiser had sent the referral months ago, I wasn't going to get her re-evaluated. I just didn't want to go through one more rejection for services from them. I didn't want them to tell me that although they can see that Rachel is special, they can't help her. Now they have to approve ABA services for her. We are also going to get evaluated by a speech therapist and an OT to determine what other services she may qualify for. I've also learned that if Kaiser denies her for any of these services, Alta Regional may provide services for us again. (We received services through Alta Regional from 18 months to 3 years old).

I also have some great news. Morgan is no longer on the spectrum. In fact, I don't think she ever was. I've wondered for almost two years since her last diagnosis, and I've always wanted to get a clear answer. Now that she's older, she doesn't have symptoms of being on the spectrum. I am beyond thrilled and now feel so relieved to have a real answer.

So as you can see, last week was full of emotional ups and downs. It's going to be a few weeks before I learn, for sure, what services Rachel will get. I've already contacted our old service coordinator at Alta Regional and left her a message asking her what, if anything, do I need to do. We are now only a day away from her surgery for her G-tube. I'm not nervous about the procedure, but I am worried about Rachel's reaction to this. Her feeding therapist wrote an awesome social story about Rach going to the hospital and getting the g-tube and such. We've been reading it to her and she seems to be understanding part of what is going to happen. I still can't believe we had to make this decision for her. The last thing I ever wanted to do was get her a feeding tube. We just couldn't continue to let her lose weight and eat and drink next to nothing each day. I'm hoping that with better nutrition, she can make good progress with her therapy.

And speaking of the therapy.... We plan to continue with our current therapists whether Kaiser pays for them or not. We've finally found the best therapists for her in the area and we're not going to change that.

Now... to start packing for our hospital stay. I'm trying to set aside the emotions about her diagnosis and just focus on getting through this week. Then I will take time to let this all sink in.

Please pray for us on Tuesday! Thank you!