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Stigma Post #1

The stigma associated with any health diagnosis can be difficult to live with. Mental health and neurodevelopmental diagnoses are still very sensitive topics. As a society today, we act as if we are so enlightened and accepting, but many times, that’s not the case.

Take, for example, the current handling of remote learning for students across the nation. There is no nationalized plan to implement IEP’s; nor anything offered statewide even. My son is on a 504, which has been rendered useless, since he’s not physically in school to receive the built in supports and accommodations.

Living in Massachusetts, school is cancelled for the remainder of the year. Our Governor, Charlie Baker, has been having daily press conferences throughout the stay at home period; keeping citizens up to date with the latest information and advisories. Our state is in the first phase of reopening.

This post though, it’s not about that. It’s about how invisible our special needs children have become in this pandemic.

Special needs children (and adults for that matter), have been completely neglected from inclusion, anywhere. This is the exact opposite of how it’s supposed to be.

I’ve heard Baker and Cuomo both repeatedly speaking of the graduating seniors, and how sad it is they are losing out on their chance of physically graduating, attending prom, banquets, etc. I feel sympathy for them, sure. However, these young adults have their whole life ahead of them. They made it! They are off to great things – the world is their oyster.

Like a mom friend on Facebook mentioned, our children are being left behind. They are invisible. When I try and talk with others in real life about how far behind my son is slipping, I’m dismissed with, “Well, they won’t be holding this time against anyone.” It’s invalidating and infuriating.

When both Governors Baker and Cuomo were asked about what’s being done to support adult disabled populations, neither was ready with an answer. I was not impressed. This population is just as at risk as those in nursing homes, especially if in congregate living. I’m aware they can’t be on top of everything, but we’re in week ten here. (And I’m not meaning to negate any of the wonderful work both have done to keep their states safe. This is just a matter very dear to my heart).

Perusing the Massachusetts Department of Education website, I’m saddened to see that there’s absolutely no mention of special education administration, or expectations.

As a special education family, we are left floundering. I felt invisible before this- now I feel as if we just don’t matter. And my husband and I have fought a long, hard battle over the past three years to be where we are with the 504 Ed plan. Our son has fought even more so, and to see him regress is heartbreaking.

I submitted a request this week for a re-evaluation for an IEP for my son. I don’t know when that will happen, but at least it’s been sent and received.

I just want for him what should be rightfully his. A Free Appropriate Public Education. Is that really too much to ask?

One reply on “Stigma Post #1”

I’m really sorry to hear this. I agree most of the focus is being given to those graduating when the real focus should be addressing issues like this. Specially now that the deficiencies like lack of inclusion and empathy for every child in school are being exposed the focus should turn to find a solution. I’m sure he will remember all this moments you are spending together as a very special time in his life. Stay strong

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