When you are a parent going through evaluations with your child you run a full gamut of feelings. You feel guilt wondering if you did something wrong raising your child. You feel anger that your child is having a difficult time. You feel sad that things maybe aren't as easy. You feel bad for so desperately wanting for the doctors to find something...anything...to explain why things have been so difficult.
This is where I have been for over a year with my almost 4 year old little girl who also has a twin brother. For that past 18 months we have struggled. There are moments she is the absolute sweetest, funniest, and most loving toddler you will ever come across. Then there are moments where she just screams. It's that kind of scream where it just feels like she isn't even aware of what is going on around her. Given the fact that she is 1 of 4 kids in my house, I'm very aware of what feels age appropriate versus what doesn't. And this...this just doesn't feel right.
You may have read a previous blog I wrote about our experience with her developmental pediatrician evaluation. In that process it was not determined she was on the spectrum, which I didn't expect. I left there pretty much knowing what I already knew...that it seems behavioral but that because of her age they would not put a diagnosis such as ADHD on her, although she does show early signs of that being possible as she gets older.
The next step was to go through her sleep study. You see, for 2 years she has been waking up all hours of the night. Sometimes it's more restless sleep and she will come ask me for various things. But other times she wakes up screaming in what appears to be a night terror. If you experience this in your house you know there is no talking to her and it can last a long time before they come to and are ready to go back to bed. All of this coupled with her starting her days as early as 4:30am have me confidently believing if we can correct her sleep and she is more rested, then perhaps some of her behaviors will start to get better. Sounds logical in theory, right? I mean, think about a day when you haven't gotten enough sleep. I know it makes me cranky, too.
We get to the sleep study day. I was so nervous how she would do being hooked up to everything, but nothing compared to the guilt I felt that I was praying they would find something. A reason for why she is having these struggles. What mom wishes for this on their child? I felt horrible. She fell sound asleep and I stayed up virtually all night just watching her....hoping all of those little nodes would see what we see at home.
We get the results a week later. Nothing. Not one thing showed up to explain her sleep issues. I sat and listened to the doctor tell me that I need to establish a consistent bedtime routine and I felt my blood-pressure rising. All I could think about was, 'I have 4 kids I THRIVE on consistency to make my house function.' I got off of the zoom appointment and just sobbed. I again ran the gamut of the typical mom guilt emotions claiming it all as my fault. It HAS to be something I have done in the last few years of her really young life that got us to this point.
Have you ever felt this way?
It's a lonely feeling to have all of these emotions going through your head. But here's the thing...and I really want you to listen...IT IS NOT YOUR FAULT. Just because the doctors don't see it in that particular day does not, and I repeat, DOES NOT mean it's not there. You are with your child 24/7. They are getting a small glimpse into your child for a short period of time in comparison. If your child is anything like my little lady, she absolutely LOVES her one-on-one attention times during anything therapy-related. So it 100% makes sense why we haven't gotten the answers I initially thought in her evaluations to date. I know what we see. I know the look in her eyes when she is really struggling. I know with every fiber of my body that something isn't right. I know there is absolute truth to that mom gut you always hear about. If you read this far and find yourself nodding your head...you know it, too.
Here are some things I want you to do:
Take care of yourself.
Take care of yourself.
Take care of yourself.
If you are in a similar situation searching for answers, it's draining. It feels like a 12-round fight. It is extremely difficult, maybe near impossible, to fight and advocate for your child if you are not feeling well yourself. Join a gym. Take advantage of the summer nights and go for a walk. Fuel your body with the right foods. NEVER EVER turn down someone's offer to watch your child to give you a break. I promise you that if you do these things it will make you that much stronger in the tough situations.
You got this!!!
HLC Therapy Group, LLC is a pediatric therapy provider offering speech, occupational, and physical therapy services in McHenry County and surrounding areas located in Lake in the Hills, IL.