1. What is the name of your child’s diagnosis?
P has been diagnosed with: Autism Spectrum Disorder, Social Anxiety, Persistent Depressive Disorder, Developmental Coordination Disorder, Sensory Modulation Disorder (Over-Responsive), Sensory-Based Motor Disorder, Postural Disorder, Dyspraxia, and another diagnosis that we are just beginning to understand so I won’t mention it here.
2. Tell us a bit about how this affects your child
P is intelligent, curious, thoughtful, kind, and loves to learn. He can have trouble understanding that others have different opinions than he does and struggles with understanding social interactions. We have worked with a team of professionals to help P with his language and communication, social skills, motor skills, and mental health. He can’t yet ride a bike, but in the last couple years he has learned to ride a scooter! He still takes stairs quite slowly as he can’t yet alternate legs when descending. He struggles with stamina with school work and needs me to scribe for him so that he can focus on his ideas. He has increased his communication skills and can explain things to me very well. If he is dysregulated it can be more challenging for him. He is able to communicate with me that he is having trouble, though. He has come so far!
3. What have you learned from your child and being his/her parent?
It’s hard to express how P has changed the trajectory of my life. Just like most parent’s experience, P isn’t what I expected. He is, in fact, an even more extraordinary kid than I could have hoped for. He is full of empathy and compassion, and he is so funny. He loves dogs and nature. I am his biggest fan. P has taught me to be more patient than I thought I could be. With him, certainly, but more so with others. People can’t know what they don’t know. More awareness of different experiences is critical, I think. The famous saying: “if you’ve met one person with autism (or anything), then you’ve met one person with autism” is absolutely true. Kids are all unique, including those with special needs. Being P’s mom is the greatest.
4. If you could give any advice or guidance to a fellow mom receiving a new or similar diagnosis, what would it be?
One piece of advice I have is that they should join online groups right away. I’ve learned a lot from the special needs communities. When you join, you start to see things that make complete sense to you but perhaps wouldn’t make sense to NT (neurotypical) families. Then you know you’re in a place that gets your family, and it’s such a nice feeling. Other parents are so willing to share successes, struggles, advice, therapist recommendations, and so much more.
Also, try not to get caught up in functioning labels. P is what is often called “high functioning.” I dislike this term because it takes away everything he struggles with and works so hard on. It is easy for him to be dismissed in that way. Low functioning is not useful or accurate either. That takes away from all of the strengths and abilities of that person. The other options are high and low support needs, which is better. But even then, P often needs a high level of support in some areas but not others so it can be confusing to some.
Finally, I would say that it is important to trust in yourself and your child. Advocating for your child will become your main focus. It’s important to trust in what you know and have confidence. That can be so hard when things are new and you just want someone to tell you what to do to support your child. You are the expert in your child, though, and the more clear you can be about what they need the better. It took me a lot of ‘fake-it-til-you-make-it’ practice, and I am still not always comfortable. But every interaction gets better.
