When children with special needs can’t get the help they need

We knew from the time my son was in pre-school that he was not like the other kids. He was only five the first time we took him in for testing. Over the years my sweet boy has been tested and evaluated for everything from ADHD to Bi-Polar to Autism. After a few misdiagnoses and false starts, I’m so grateful that with the help of a wonderful doctor and supportive school we now have proper diagnoses and treatment in place, but it hasn’t come free of struggle.

In November of 2017, we began the IEP process at the recommendation of my son’s doctor. Even though he attends a small private school, where an IEP is not required to receive accommodations, she thought it would be of value to have one in place both to help guide our current school on what additional accommodations he may need, and in case he ever does attend a public school we wouldn’t be starting from scratch.

The IEP process was arduous, incredibly frustrating, and at times made me feel like we were the very last priority of our local school system. One day I’ll write a separate blog post on my feelings about the process, but our experience is still a bit too raw for me. However, one of the good things to come out of it was to find out that my son has a learning disability called dysgraphia. One of my son’s teachers had begun to suspect something might be going on, and the educational psychologist was able to confirm his suspicions through a variety of tests and observations. This was good news for us because we now understood that his challenges with writing were not related to his other conditions. The diagnosis also came with specific recommendations on how to help him in this area.

While all of the research pointed to the benefits of occupational therapy for children with dysgraphia, when we finally had our meeting with the county school system to review the IEP there was no mention of occupational therapy being offered. Even when I questioned this and insisted on further evaluation by their OT, we were offered only one 30 minute session per month. As a result, we have had to supply the necessary therapy my son needs through private means.

I share this with you to bring awareness that children with special needs often are not afforded the treatment(s) that are most beneficial due to a combination of limited state and federal funding for schools, outdated standards for evaluation, and a sea of red-tape. My family is fortunate that we live in a town with a University that offers a free OT program. But many parents do not have access to these kinds of resources and are left paying most of the cost out-of-pocket, and/or limiting the amount of treatment their children receive due to insurance coverage restrictions.

That is why organizations like Orange Effect Foundation are so important. Their mission is to make sure children with speech disorders receive the speech therapy and technology they need. The foundation was started by Joe and Pam Pulizzi, who have a son with autism. When they witnessed first-hand how critical early intervention speech therapy was in their son’s verbal development, they knew other families with autistic children should have the same access.

“While there are many wonderful organizations that focus on autism and research into speech disorders, there are very few that focus on providing grants to children who desperately need consistent speech therapy or equipment,” explains the Orange Effect Foundation’s website.

Every quarter, Orange Effect Foundation receives grant applications from both providers and families. Applications are open to any and all families. The leadership team researches and reviews each case and delivers financial grants to those who need it most. Since they began awarding grants in 2015, the Orange Effect Foundation has purchased 24 speech generating devices and provided over 2,500 hours of speech therapy to children needing these services.

If you would like to donate or find out how you can support Orange Effect Foundation, visit their website.


This blog post was written in partnership with the Blogging for Better Supporters, a collective platform to raise awareness and money for a different charity each month. #bloggingforbetter


Featured image by Marcelo Leal on Unsplash

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