I guess I already knew. Jason and I had been using this term to describe Jesse for quite sometime: autistic. Something about seeing it the other day in black and white confirmed by the education specialists just felt like a punch in the gut. Jesse’s autism was now “official” for all educational purposes.
The diagnosis we were given when Jesse was a baby was “developmental delay” and “hypotonia” (which just means he has low muscle tone). I already accepted this. Jesse has always had to work a little harder and longer to accomplish a milestone task. He didn’t start walking until he was 23 months for goodness sake.
The last week or so has been compiled of meetings/interviews/observations with what I like to call “Jesse’s team”, to go over his Individualized Education Plan (IEP). I am so thankful for these women who have made it their professional calling to help kids like him. His team includes his speech therapist, occupational therapist, physical therapist, specialized Pre-K teacher, and Special Education coordinator from the public school system. The supplemental helpers are Jesse’s teacher aides (who are fantastic), the Autism teacher, his peers, and basically any other teacher or staff member at the school that he has befriended. He knows more people in the school than I do which I find hilarious and comforting. They all know him and love him and can see what I see in him.
At the same time, recognizing that the label of Autism is now forever attached to my son is hard to process. It explains why he acts the way he does, but Jesse is a lot more than a stereotype too. As I went over the confirmed results with his team I wanted to cry because I could no longer put a veil over the obvious, admitting my son has a disability. There is grief for the parent of a special needs child because I want so much in life for my son just like every other parent. I want him to speak in sentences, to hear ‘I love you, mom’, to understand why we celebrate Christmas and get crazy excited about it like other kids, to pretend to be a fireman or superhero running around the house saving the day!
And yet there was relief in finally coming to terms with Jesse’s autism. For so long I have wrestled with feeling like a failure as a mom because he hasn’t been able to keep up with his peers in skill level. I thought part of it was something I wasn’t doing right. It isn’t my fault and it isn’t his either. Jesse has autism. The consolation of having an explanation for his delays, quirks, and irrational fears and the sadness of the reality is an odd emotion to work through.
When the Special Education coordinator looked at me and actually told me I wasn’t a failure I wanted to throw my arms around this almost stranger and give her a huge bear hug. Did she know I needed to hear that? She must have, it’s her job. I’m sure she has seen that look in parents’ eyes before when something really hard to accept becomes concrete. This is my life and I mostly try to focus on the good rather than dwell in self-pity over the hard. Yes, Jesse has autism, but it looks different in each child. He is the happiest person I know and loves to laugh. For the most part he is unaware of himself, which is so refreshing. He doesn’t know he is “different”. Jesse is just Jesse.
What I want other parents of special needs children to know is that it is not your fault and you a not a colossal failure in parenting. The way we teach and raise our kids just looks a little different. Show yourself some grace and I when I forget this, tell it to me too. Our lives are filled with a bit more misunderstanding from outsiders, worry, and stress. But I know you love your child ‘to the moon and back’ as the saying goes. You wouldn’t go to the insanely long IEP meetings if you didn’t. I know that you take her to all of the doctors’ appointments, the neurologist, audiologist, therapy, and playgroups to help your baby. Breathe a little because you are doing the best you can so give yourself some credit now and then. You wouldn’t do all of this if you weren’t an amazing parent! Today, count the blessings you see in him. Look for it because I know that through the hardship there are silver linings you can be grateful for. I see you today and I’m rooting for you.
Grace upon grace,