When Tate started Early Intervention in the spring of 2008, we were the only family I knew who had to use the services. The only one. I had to learn how to navigate the system. I had to learn how to talk to insurance. I had to learn which therapies were important and which were not. I had to concede that my child was different and needed “intervention”. Many of you out there know, it is not easy to admit that your child has special needs, and it can be very, very lonely.
In the early stages of Tate’s intervention, I read…and read…and read. Books on development. Books on Sensory Processing Disorder. Books on Sensory Integration. Books on speech delay. Books on autism…I was on the Internet all.the.time. Always searching. Initially, I searched to find the definitive example that would show that Tate was not autistic. I was scared and only knew of negative connotations with the disorder. After a while, I stopped denying the possibility of autism, and started to read about therapies, interventions, and programs for children with autism and other intellectual disabilities.
I hadn’t yet found a group of people who knew what I was going through. Who knew what it was like to be told that their child was “delayed”. Who knew that their child would need a lot of support to just be able to do the things that typical children do. I had no one who had been told that their child was not typically-developing. (As a member of a message board of moms with kids born in April/May 2006, I did encounter a few moms with kids with SPD…and they were able to give some insight and advice…but they were miles away…and I couldn’t get referrals or someone to give me a hug and look me in the eye and tell me it was going to all be ok.)
In Tate’s first year of preschool, we met a few other families with children in his class. I was hoping for connection. For a group of people who would “get” it, and scream, “me, too”! I wanted to hang out and spend time with them and see how their kids were doing and what therapies they were using. As we got to talk to other parents, and I grasped for connection, there was not much. For whatever reasons, we were the only family who had a child as delayed as Tate was. We were the only family getting outside therapy services. The. only. one. And no one else had older children who had been through the program. So much for comparing notes.
We forged ahead. At Tate’s 4th birthday party I experienced the role of “trailblazer” for the first time. One of the mothers had a daughter in Tate’s class. Her daughter was younger, and still non-verbal. She had just found that their insurance would cover some speech therapy. She asked if anyone knew of an outside speech therapist…and if so, did they like the SLP. I perked up. We had a SLP that we loved…that Tate loved. She was great. I gave Em the number. I said it was amazing how Tate responded to the SLP. They were able to get her daughter an appointment a month later. They still see the same SLP today.
My next experience with taking the lead came in 2011. Em called me, out of the blue. It had been several months since we had spoken. Her daughter was in a different preschool class than Tate that year. But she wasn’t calling me about her daughter. She was calling me with questions about her son. Her son is 2 years younger than Tate. She said she remembered some of the behaviors and delays that I had talked about with Tate, and she said it reminded her a lot of her son, who was just about 3, and in Early Intervention. They were in the process of the district evaluation for the Early Childhood program. When she started talking, it all was very reminiscent of our experience with Tate. The main difference is that her son was a wanderer, and thankfully, Tate never wandered. I told her that we had just had an evaluation for autism, and that he got a diagnosis. She cried a little, but said she thought that might be it. I encouraged her to make a neuropsych appointment.
This past fall, a friend contacted me. She thought she remembered that Jake had some issues with math. Apparently her daughter was struggling and the teacher suggested it may be dyscalculia. Essentially, that is Jake’s issue. I encouraged my friend to get an evaluation done. I also gave her some of the tips we were given for Jake in regards to math. She talked to her district, and she got an evaluation done. Her daughter is in the process of getting an IEP. I shared websites we used with Jake, as well as some other resources. I also gave examples of Jake’s math IEP goals, and accommodations so she knew what they might look like.
Just the other day another mom approached me. She has a son Jake’s age, and said he can be so focused and into something when he likes it, but his teacher told her that he cannot maintain focus. She said they are getting an evaluation–and it turns out they are going to the same neuropsych that evaluated both of my older boys. She asked if she could pick my brain and ask a few questions. I assured her that I would be willing to answer any questions. I already have some bullet points and resources for her…some things that might assuage her anxiety about the whole evaluation and possible diagnosis. I know her son..and in some ways, he reminds me of my boys and their fidgety behaviors when they are anxious, in sensory overload, and the like.
So, I don’t know if I’m necessarily a “trailblazer”, however, I seem to be the one person whose been through “this” before for parents who are in my current circle. I remember feeling alone, scared, and uncertain. I remember trying to find a shred of hope in the dark. I remember. And because I remember, I will do what I can to help other parents not have to face this alone. I will give referrals, hugs, and the”it is going to be ok”. Because it is. Different, yes…but ok. And sometimes, even, great.