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.
Thank you for sharing – it sounds so hard indeed 😦 One thing is for sure – that beautiful girl is so very loved 🙂
(and who wouldn’t prefer being at home in jammies??)
So much love, Tiff. I know how hard you work to keep things together, and you do a beautiful job.
You are so right. It does not get easier to hear those words spoken or written in black and white. I sometimes feel they are being read to me out of spite. To tick me off. To intentionally hurt me because I tend to be positive about things. I’m not in denial, but like you, we decided to be a family and to enjoy our little guy as he is. When therapists notice my casual manner and positive outlook and (gasp) my smile (even though they never see the dark days), I feel their labels and harsh, but realistic, words are said to me to bring me down to earth — as though I had no idea.
Like everyone else, I appreciate you sharing these thoughts. Our little guy is only 7, but I already see exactly what you mean: things get easier, but they get harder, too. I have been watching Olivia since she was 7 herself, and you have been a blessing for us. I would not have been mentally prepared for half of what he does (or doesn’t do), if it weren’t for your blog. In fact, I am sure this is the reason I do smile and take things as they come. So, thank you.
We got word this year that our Olivia also doesn’t have autism, even though it was in her file at school because it meant she’d receive more services. The awesome psychologist at O’s school wanted to take the autism label out because he felt like she was being short changed.
You’re right about it never getting easier to hear harsh words about kids we love so, so much.
You are not alone in this.
Update the potty-training program, if you can. We just went thru months of underpants-under-the-diaper (you can imagine the extra laundry), so that J. could “feel” the wet. She’s made progress, tiny bit by bit (we used to not even be able to drag her into the bathroom, now she goes willingly, except in a strange environment), and she can stay dry as long as we keep taking her on schedule – she never initiates unless she is going to go swimming, when we say, “After you go, we’ll get your suit on.” ; )