Tag Archives: special needs

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the treatment(s) that are most beneficial due to a combination of limited state and federal funding for schools, outdated standards for evaluation, and a sea of red-tape.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

This hard season of parenting? It’s temporary

This year the journey to spring has seemed like two steps forward, one step back, with 75 degree days followed by 12 inches of snow two days later. And right now everything just seems like a big sopping wet mess outside.

It’s pretty much how parenting feels, especially lately. It’s been 2 steps forward, one step back, sometimes feeling like I am knee-deep in mud and muck. Maybe you’re there, too.

Maybe you have just come out of a hard season with one child, seeing light on the horizon, only to have another one completely fall apart.

Maybe you have a child with a mental illness, disease, or learning disability and after months of doctor’s appointments, teacher conferences, medication changes, therapy, etc. you start to see improvement. Maybe even a few good weeks go by and you start to exhale a little bit and think the worst is behind you, and then suddenly you get the call. Your child has a bad day. A really bad day. And it feels like you’re right back where you were, with no end in sight.

Maybe you have a baby who has been crying for 6 months and not sleeping and you are 100 days past exhausted and weary to your bones. But then 4, 5, 6 nights in a row she sleeps. You sleep! It’s bliss! You start to feel semi-human again. Then on night seven she screams for six hours straight and you are on the floor next to the crib sobbing with her, wondering how anyone could handle this.

And you’re thinking, “One month! All I want is one month where everything is smooth sailing and everyone is healthy and happy. Is that too much to ask God? Why can’t we catch a break? Why does this keep happening to our family? Why?”

You’re knee-deep in the mud and the muck. And the glimpse of easy, smooth, and happy almost seems cruel if it’s going to be taken away. What’s one warm and sunny day if it’s going to be followed by more bitter cold?

But then, where did we get the idea that parenting is a straight path and you have to choose to either move forward or go backwards? Or that the end of a harsh season signified the beginning of a warm one? Who sold us this picture of parenting? And for goodness sake, why did we buy it?

Parenting, like the weather, is unpredictable. Seasons come and go, but not in a neat and orderly fashion. God’s word tell us that to every thing there is a season, and a time to every purpose under the heaven:

a time to weep and a time to laugh;

a time to mourn and a time to dance;

a time to get, and a time to lose;

It does not say, however, that the weeping ends when the laughter begins. Or that once you start dancing, there will be no more mourning. Nowhere does God promise that our time of loss will be short and our time of prosperity plentiful. Only that there will be time for both.

Maybe the point is not to simply endure the hard winters of parenting, while you wait for spring to arrive. Maybe the point is to look for the beauty that can be found in each, knowing that God has promised there is purpose in it all.

This post originally appeared on the Neither Height Nor Depth Facebook Page.

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Photo by Annie Spratt on Unsplash