There was a lot going on in our lives for a few years. We continued with the therapy services we had, and kept going to the developmental pediatrician, trying this test and that assessment, every 6 months or so, until my daughter turned 6. Therapy was great, and we saw great progress with both language and motor developments. She potty trained around age 4.5 years old, just in time for my 5th daughter to join us the following spring, and my marriage to end the following summer.
At age 6, she aged out of the early intervention resources that were available to us.
I was now moved back into the city, continuing to see a family doctor and the developmental pediatrician, and trying to find resources to help my daughter. But everywhere I turned.. I was turned away. The early intervention services hung up on me as soon as I mentioned her age. The developmental resources apologized, but without a formal diagnosis, there was nothing they could do. I even contacted the health department to ask about special education services, and I was informed that because her disabilities weren't physical, there wasn't much available there either.
I finally connected with a parent network. Their monthly newsletter gave me lists of programs and private groups that I could connect with, even without a diagnosis. I began to put together things we could do to target the issues I knew about, even if I wasn't getting direction or help. We did an adapted swim lesson for children with disabilities, which was perfect for her, and a lot of her clumsiness eased. I signed her up for a sports activity class that combined one-on-one coaching with group social skills. She loved it, and was able to interact not just with her coach buddy but with other kids.
I started my own research on sensory tools and needs. I bought a giant exercise ball, a mini trampoline and black out curtains. I got headphones to help with noise issues, and I got exercise weights for weight stimulation. I tried to teach my daughter calming techniques to help with the anxiety and tried to create an environment that would help not hurt her. I even saved up to buy her a tablet for the educational multi-media games and videos that seemed to be the way she learned best.
It all paid off, and the meltdowns became fewer and less violent. Because her environment was more manageable for her, we did notice more self-stimming behaviour, but it was less disruptive. I learned how to put limits and boundaries on that without trying to ban it altogether, and emotionally, my daughter became calmer. She began to talk more -- lots more. She sang .. well sings. Almost constantly. She verbally processes her feelings, and now I'm able to talk her through social situations and anxiety-causing moments, before the meltdown happens.
Her learning has taken off, and at age 7.5, she began reading. Now I'm faced with a new challenge, because her vocabulary and understanding of language is still delayed that it's affecting her reading comprehension. But I now know that I can find the tools to help her, even if it's challenging. She can learn, which is so exciting for us.
It still wasn't perfect though. There were still lots of unanswered questions, and we were still waiting for a psychometric assessment with a child psychologist. And without a diagnosis -- a label -- there were still limits to the resources I could access.
Finally, the spring before she turned 8, things finally started to come together...