So, here it is: Graham is in the Autism Spectrum, his official diagnosis is PDD-NOS (Pervasive Developmental Delay Not Otherwise Specified).
I wrote a little bit before about how I felt back in December when the pediatrician expressed some concern about Graham’s milestones and gave me an M-CHAT and some phone numbers to call. I was mostly unconcerned but that night when I sat down with the test it all came at me really fast.
The M-CHAT is a screening test for autism in young children. It has 23 questions. You’re supposed to talk to your doctor if you have 2 fails. Graham has (depending on how strict you are) between 10 and 15. I knew then, I knew it and I couldn’t be convinced otherwise.
I made phone calls, I set up appointments and then I waited. Every day that passed only made me more sure. Yesterday we finally got our diagnosis. It was hard, I knew it would be, but I think it was easier for me than for everyone else because I’ve known for a long time.
From what I’ve read of other people’s experiences it seems I’m a little unusual. People are so ready to insist their kid is fine, that it’s going to be okay, that they’re just a little behind. I’m not sure why I’m different. Perhaps it’s because I find myself so regularly frustrated with the Bug that I needed something to tell me it wasn’t that I’m a terrible parent. To be honest, I’ve been feeling like a pretty bad parent for a very long time. It’s hard to calm the Bug, it’s hard to direct him, it’s hard to play with him, it’s hard to bond with him. In a way, knowing he’s autistic provides me a little bit of comfort. It’s not my fault that it’s so hard, and it’s not his either, it’s something else entirely.
Yesterday, (Valentine’s Day) was our sit-down to get the results of Graham’s evaluation last week. Like our Early Intervention evaluation, it was mostly stuff I expected. (I was there for the testing, after all.) Gross motor is good, just a bit behind. Fine motor could use a little work. I was happiest to hear about his non-verbal cognition, which was basically on target. But the language… well, it was worse than expected. Expressive is at 3 months. Receptive is less than 2 months.
This is the thing that I think is hardest to explain to other people. Yes, toddlers are tough. In a lot of ways Graham is no different from the rest of them, especially the ones who don’t talk much. But it’s hard to express just how big the differences are with receptive language. Parents with normal kids have been interacting with them since they were newborns. They are so used to seeing their child smile at them, look at them, listen to them that I’m not sure they can process how different things can be for us. You can’t show your child how to play with a toy. You can’t show them something to look at. It’s so all-encompassing.
Many of Graham’s unusual behaviors have been around since birth. But his regression has become a lot more apparent to me now that we’ve been asked so many questions so many times. It happened around 8 or 9 months and it was relatively subtle. I completely understand how people can miss it, especially if you don’t want to see it. I think we’re really lucky that we’ve caught it and that we can move forward.
Feeling relatively calm about the appointment meant I was ready with questions to ask. (Okay, so I was feeling calm until I actually walked into the office. Then I was on the verge of tears from the moment I sat down in the waiting room.) What do we do now was the biggest one.
We go through Early Intervention. We give them the report. Our doctor recommended 20-30 hours a week of ABA (Applied Behavior Analysis) plus some speech therapy, a bit of fine motor assistance and a playgroup to help socialization.
There is no prognosis yet. The first 6 months are the most important thing.
Yesterday was a rough day. Today is a lot better. Today I feel like I can focus my energy a little bit. Still, there are lots of things I’m not ready for. I don’t think I’m ready for books. Thanks to a little help from Bird on the Street I am turning to blogs instead, for now. I get to see personal experiences, I get to see things up close and I get to meet some new people. I’ve gone through a whole bunch and I’ve added a new list of Autism blog links on the right sidebar.
This is by no means an exhaustive list. It is the blogs that connected with me now. For example, I am not yet ready for blogs about kids with severe autism or teenagers with autism. For now I am still holding out hope that Graham will be mildly autistic or high-functioning. I am not quite ready for blogs about whole sets of siblings with autism and other special needs. I’m already freaked out enough about the prospect of one kid with autism, I’m not ready for two.
I’m also not ready for people who are “at peace” with all of it. I’ve still got a decent amount of anger. And, I guess, there is a little bit of denial. It’s not about Graham, it’s about me. I know there’s no mistake with his diagnosis, but surely there’s a mistake that I am the parent of a special needs kid. I am not warm and fuzzy. I am not patient. I am not ready to say he’s perfect just the way he is. I will not be waving the Autism Awareness flag on the steps of Capitol Hill. I am all wrong for this.
I feel like Graham deserves someone who would put their whole life on hold right now to help him get better. I just can’t do that. I am drained from getting through the last several months. There is a lot of work coming up, and while I’m hopeful about it I’m also feeling preemptive exhaustion. For now I’m reminding myself that I’m working the way I’ve always worked: I need to be okay if I’m going to be a good parent. I am going to keep looking for a job. That’s what I need. And I have to trust that it will help me be better with Graham.
I’m working on the anger part. It’s very easy for me to slip into being angry at everyone who has ever raised a normal kid. Even people who have an autistic kid, but had that child 2nd or 3rd. I am working on it. It’s one of those things that’s an unavoidable reflex for now and one I’m sure will fade as I get used to it.
In the meantime, if you’re a parent with a young child and an autism diagnosis, I’d love to hear from you. I look forward to learning from the people whose blogs I’ve found, whose kids are dealing with preschool and kindergarten and elementary school. But I’d also like to find some other new-to-autism parents who are bumbling through this whole process, too. Feel free to comment. Or you can email me, my address is in the right sidebar.
And if you are an autism organization looking for a posterchild for early diagnosis, I think I have a face for you.
I took this video a few days ago while The Bug was really into “Ma” as his syllable of the day. I know it’s just the same thing over and over, but how could you expect me, his Mama, to stop filming?
We still haven’t celebrated Valentine’s Day (which combines with our celebration of Eric’s birthday last week). Not sure when we will. Hopefully soon and hopefully it will be a better day than yesterday.