Today was Deanna’s first day of high school! 9TH GRADE!! FRESHMAN YEAR! She was definitely ready. We have been getting up early for about 2 weeks so she could be used to waking up at 6 am to get on the bus at 6:30. Every morning, when I went to wake her, she’d ask “School?” and I’d have to tell her not quite yet. Schools supplies were bought (thankfully she didn’t need much this year), and outfit ready to go. Hair was cut into a cute little bob. She was ready!! The bus arrived at 6:45 this morning at our front door. I made her let me kiss her on the cheek, said hi to the driver and off she went. Only a few tears fell from me, and I was super proud of that. Fast forward to 2:30, when the bus dropped her off, again at our door. I am so excited to hear how her day went, if she found anyone she knew, who her teachers were, if she liked her classes, all the normal stuff every mom wants to know…
Reality quickly set in. When she got off the bus, she wouldn’t talk to us. She responded to every questions with a yes, even the random, nonsensical ones. Imagine know literally nothing about your child’s day. Not because they won’t tell you anything, but because they can’t. I don’t know if her teachers were nice. I don’t know if she saw any friends. I don’t know if she was happy or sad. I don’t know if she got hungry, or thirsty, or tired. And that is one of the hardest things with being the mother of a non-verbal child. The never knowing.
For those of you that don’t know, Deanna was born with Down Syndrome, and then, at the age of 7, was diagnosed with Autism. Having this dual diagnosis makes life interesting for sure. Deanna has a lot of words, but often they don’t make sense. She gets a lot of her language by memorizing phrases, and uses them, sometimes appropriately, sometimes not, in conversations. It’s called echolalia. She has always spoken this way, but when she was little, we thought it was just cute. It wasn’t until she was almost 7 that a speech therapist spoke with me about a possible autism diagnosis, due to her stimming, echolalia, and her behaviors in social settings. Once she got the diagnosis, our issues over the past few years suddenly made so much sense, and we were able to change how we approached her and her behavior. I wouldn’t say life got easier, but a little bit of the edge got removed.
We started ABA therapy almost immediately after getting her diagnosis, and she has made so much progress in so many ways. She reads, she makes her own meals, she dresses herself, she answers questions, she verbalizes things more, we can go places without incident. At least most of the time. On days when she is tired, overwhelmed, hormonal (yay teen years), or just in a bad mood (and no, just because she has Down Syndrome, she is not happy all the time, lol), she shuts down, just like we all do, so it becomes impossible for her to verbalize anything. That is what happened on the first day of school. She was tired and overwhelmed, and refused to verbalize how her day went. Which is so frustrating for both of us, because the less she talks, the more I ask.
The hardest thing I have learned to do with Deanna is to back off. Give her space. Let her come to me when she is ready. And even then, she may still not answer my questions. I have to be okay with that. 15 years in and you think I would be, but some days I am not. Sometimes I just want to know she is happy and enjoying her day. Sometimes I just want to hear “I love you too.”