Sunday, June 07, 2009

some days are harder than others

We got the diagnosis from the Kaiser diagnostic team on Thursday that Elliott has autism spectrum disorder. This confirms what the neurologist from Kaiser and developmental specialist from the Inland Regional Center have told us. I like to think I'm very in control and so I took the Kaiser diagnosis in stride; I didn't feel bad about it at all. I felt like, okay, we will continue to work on this and everything will be okay. (The back of my mind screamed, what if it isn't okay? but I tried to ignore this.) The teachers from IRC began to work with him this week (3 hours per day, every weekday), something I've been fighting for for the past five months. But suddenly this afternoon, I started to feel really sad. Elliott has had a difficult week--he isn't sleeping well and Disneyland threw him off of his routine. He screams. And screams. And it's not as bad as it was before the diet change, but it's still a hell of a lot of screaming and sometimes it just gets under my skin. Everyone always says that this age is so much fun, but for Ryan and me, this age fills us with anxiety and fear and stress and heartbreak and frustration. This is punctuated with fun, but it is difficult to have fun when you don't know if everything will be okay. I don't know why both of our kids have had such a hard time. And I know it could be worse. I know they could have cancer or missing limbs or terminal illnesses. But it's still really hard right now. I feel bad asking anyone, even family, to babysit him. I'm scared that no one really likes being around him--or us--and sometimes I just feel extremely isolated. I know I will pick myself up tomorrow. It's just been a long day.

3 comments:

kindra said...

We will definitely be praying for you guys. And I don't know if this helps, but 2 isn't always fun. Esther will freak out and scream and throw a fit and people ask what's wrong..I always say "she's 2"...it's just that age. HAng in there, you are doing GREAT and as I told Ryan when I talked to him the other day..Elliot is SO blessed to have you guys, parents are willing to do WHATEVER they can and are willing to fight for him. Praying for the fight you guys have ahead of you...And I know you guys will be VICTORIOUS!!! Love you guys.

jim said...

Elliott is a great kid. He is loving and wonderful and we love seeing him and watching him grow. He has advanced so much in the last few months and with the extra help and love and attention you and Ryan he will be just fine. We love Elliott and your whole nuclear family so much. The little man is going to be just fine. He is also going to be a twenty game winner for the Dodgers. Just projecting.

jim said...

Elliott is a great kid. He is loving and wonderful and we love seeing him and watching him grow. He has advanced so much in the last few months and with the extra help and love and attention you and Ryan he will be just fine. We love Elliott and your whole nuclear family so much. The little man is going to be just fine. He is also going to be a twenty game winner for the Dodgers. Just projecting.