I’ve been reading about other parent’s journeys with their children and navigating the system to access help for their child who they suspect has developmental delays. I became reflective about the beginnings of our journey with Johnny.
Looking back at when Johnny was assessed for his speech delay at 2-1/2 he was not a happy boy during that assessment. I could tell he did not want to be there and did not want to cooperate with some of the SLP’s games. Some people say that hindsight is 20/20 and after four years I can say that it must’ve been so frustrating being in that room and not being able to talk. Knowing what t I do know now, I can’t believe as a professional that she said all these things to us about him in front of him. What a mistake! She presumed that he could not understand what she was saying about him because he wasn’t following her two-step instructions. She decided to make the dangerous assumption that if the child does not have receptive language skills, does not understand or comprehend what’s happening around him or her and also that the child does not have a high cognitive level because they can’t speak or she suspects autism .
Imagine if you could understand everything is being said about you and the person is talking negatively about you right in front of you is if you’re not there and any then you’re asked to perform all these tasks and play a certain way and anytime you go to do something it’s wrong note please doing it right imagine how frustrating that would be why should you act like a train seal and jump when she says jump. Then you hear this stranger telling your Mommy and Daddy how far behind you are in speech. Then the same stranger who has nothing nice to say about you is saying to your Mommy that she thought it was very odd and that it wasn’t normal to sniff your Mommy’s arm. What if you liked the scent of your Mommy and the softness of her skin? Why is this stranger being mean about how I show my Mommy how much I love her?
Six weeks ago when I was picking Johnny up from school I met one of the other Autistic boys who is in the Intensive Support Autism Classroom. I had heard many things about this boy but I wasn’t expecting his big bear hug he gave me when he heard I was Johnny’s Mother. And then as he released me he gently grabbed my arm and sniffed down my arm from my elbow to my wrist. The EA (Educational Assistant) quickly explained what he was doing and then apologized in case I was uncomfortable. I was not. I gave the little boy the biggest smile and he looked me in the eye and I told him that Johnny used to do that all the time to me too and that is so special he is choosing to do that to me. My mind raced back to that infamous first speech therapy assessment and how I was pregnant with my baby girl and t thought it was the most amazing loving thing that Johnny sinffed my arm. At that time he never hugged me a kiss me on the cheek but he did nuzzle his nose into my hand and my arm in bliss she was taking that away from me. I was angry that this professional was taking this away from me and making it seem weird. It’s not weird. At that time in Johnny’s life that is how he showed he truly cared.
So at the end of that speech assessment I felt so angry and mad that Johnny had such a frustrating first speech assessment. Little did I know that this would be the first of many frustrating assessments due to no accommodations made because of sensory issues. I knew he needed help but instead of being told what he can do I was given a list of everything he can’t do and that he needs another big assessment and one-on-one intervention due to speech delay. Then I was told that the wait list was six months! The full developmental assessment by the health care system was 6-12 months. Do we spend a lot of money and get a private assessment? But to assess publicly funded government programs we will still need the health care system funded assessment. Who can sign all the forms? The family doctor? The speech language pathologist? The paediatrician we don’t have yet because its hard to get a referral to one? Can we afford private therapy and what kind of therapy will he need? So many questions and so little answers at this time.
The one thing I would change is I would have sought out a very experienced speech therapist that dealt with Autism and motor speech delay. Even though Johnny had publicly funded speech therapy, in all honesty the clinicians tried really hard but because the lead speech therapist didn’t think he was capable or compliant enough and didn’t understand his sensory issues she didn’t not assess him properly. I remember sitting there as she asked Johnny to point at a picture and he was looking off in the distance. She would be to showing her frustration in the tone of her voice because she thought he wasn’t listening. He could hear the voices of the other SLP’s in the hall chatting loudly as he was being assessed and he couldn’t filter their chatter out. “He needs to get used to people talking.” At the time he had a thing for big plastic bins and the room he would be assessed in had bins piled to the ceiling. Can we get another room please? No he should ignore the bins, “Johnny we are done with the bins.” He had a thing about the noise of fans and the heating ducts when the air conditioning came on. “Johnny we are done with fans. There are ducts. We are not here to talk about ducts, ” as if it was as simple as that.
We were new to the system and were new to the idea of all the challenges our child was facing and felt like we were tripping over the speed bumps in the bureaucracy of the system. I now know that I trust and keep the professional close to Johnny who “get him” and help him move forward. The ones that do not “get him” I put a smile on my face and nod and then I move on. I do not waste my energy on them because all my energy must be to help move Johnny forward. One must always remember that many of the professionals know each other because they attend the same conferences and workshops so one doest want to burn any bridges. But that doesn’t mean I won’t be writing a letter to the publicly funded preschool speech therapy program and let them know what changes they might think about making in order to assess a child they suspect that may be and Autistic and how they treat might go about teaching them once they are patients.