Back in January, when things weren’t going so well for Olivia at school, we made an appointment with a therapist to see if Olivia has autism on top of Cri du Chat syndrome. She went through some testing, we answered many, many questions, the school filled out forms and we just got the results this week.
She doesn’t have autism.
The label really didn’t matter to us at all. We just truly thought she might also have this dual diagnosis and wanted to make sure she was getting everything she needed.
Hearing the report was awful. I struggled to hold it together as the therapist was saying things like “severely mentally disabled” and “40 IQ” and “toddler behavior”, etc. It’s not the therapist’s fault but it’s never, ever easy to hear those words about your child. I know all of these things about Olivia, I live it every day, but seeing it on paper and hearing it out loud from a professional is a very different animal.
When we get these reports and recommendations, I always feel overwhelmed. I constantly feel like I should be doing more for Olivia. I feel as though I need to quit my job and devote myself 100% to her and what she needs. I feel like she needs more therapy, more interactions, more everything. That’s always my initial response. But then I remember a conversation Matt and I had 14 years ago when we decided it was more important for Olivia to be a kid, and for our family to be a family, rather than putting Olivia, and us, through hours of therapy and groups that may not even help her. Let me be clear, this was what we decided for our family and we are not saying it’s what you should do or judging others for how they handle their situation. We decided that Olivia being part of our regular family life and doing what she likes and wants to do was what we would focus on. She would detest going to therapy after school. In fact, she’s so stubborn, she probably wouldn’t get anything out of it because she’d be so mad she was there instead of at home with us in her pajamas. But I still feel like I should be doing more. Always.
Having a child with special needs is difficult. It just is. You think as they get older it will get easier, and in some ways it does, but in so many ways it gets harder. The reality of their diagnosis and what their life is like really sets in. The reality of the fact that you don’t get a break, that you can’t fix it, that she won’t outgrow it really sets in. The reality of life after high school, of trying to fit into the community in some way really sets in.
One really awesome thing that came out of meeting with this therapist was that she is well-known for her behavior therapies including potty training kids with special needs. She feels there is no reason why Olivia can’t be successful at potty training. We have thought this for years but can’t seem to find the right “system” that works for Olivia. We are so hopeful that this behavior training will finally be the one that works for Olivia. Fingers crossed!
To all of you out there who have kids with special needs, know that I get it. It’s never easy to hear those reports describe your child who you love so fiercely. I remind myself that she is my Olivia and she is perfect in her own way and, most importantly, she is so very happy and loved.