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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?

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Free Appropriate Public Education (FAPE)

So I’ve mentioned how my son was diagnosed with severe ADHD, and a communication disorder in May of 2017 at Boston Children’s Hospital.

We have been working with a developmental pediatrician there since, who believes our son should be on an IEP. We do too, and tried for one, back in kindergarten. The school refused to accept the communication disorder, and chose to give us a 504 plan, stating he does not meet the requirements for an IEP.

After the past two months of remote learning, and both my husband and I trying everything within our power to get our son to work on his schoolwork, with absolutely no success; it’s time to put in another request for an IEP. And now, we are ready to hire an advocate.

The administrator in charge of the 504 plans is the vice principal at the school. She tends to make offhand remarks, without much forethought.

Take, for example, “I was in the classroom yesterday trying to get a good read on S and where he is in relation to his classmates. He really does have the most severe case of ADHD I’ve ever seen, and I’ve been doing this for over twenty years!”

Both my husband and I were stunned, and speechless. The two classroom teachers jumped in and tried to diffuse the comment; but the damage was done, in my mind. How could she make a statement like that, and he not qualify for an IEP?

ADHD qualifies students for an IEP under the health qualification.

His 504 plan is useless to us with remote learning. The accommodations run from extra time for classroom assignments, different styles of teaching (visual, auditory and written), heavy work (when he gets too distracted, send him on an important errand), and on the list goes.

To be honest, most of the accommodations don’t help- as his amazing co-taught classroom teachers explained to us in the last 504 meeting in February. They did work for kindergarten and first grade, but he needs to be present for all the lessons this year. So sending him to the office for busy work when he gets too distracted and hyperactive doesn’t work. He ends up losing out.

What’s become most apparent throughout this entire remote learning experience is that he needs 1:1 intervention, to keep him on task, at all times. This is something the developmental pediatrician has been pushing for since day one. It’s also the most difficult and prohibitive accommodation to have written into an IEP or 504. Schools don’t, and in many cases can’t, afford to provide 1:1 assistance- it’s cost prohibitive to hire on a staff member for just one child.

We’ve tried all their suggestions. We’ve had at least two 504 meetings per year, and been treated as if that’s too much to ask. The results have been less than stellar. His kindergarten and first grade teachers were at their wits end. This year was the first year of medication for him; and with it he was placed in a co-taught classroom with the two best second grade teachers.

His teachers have been going above and beyond for him, and us. The weekly emails and Zoom conferences throughout the school closure will be our documentation for the new request for an IEP. They recommended last week that I can do the writing of his assignments for him, IF he can dictate the words to me. After a full week of trying this, we were able to complete 2/4 days of work.

So now I have to organize, research and plan. I have to email the director of the special education department to request an another evaluation for an IEP. Who knows when it will happen, or how. It has to be done though.

We are losing him. I say, “Okay, time to start some schoolwork in five minutes,” as I set a timer on my phone. At the mere mention of schoolwork, he self destructs. Things get thrown, he breaks his favorite toys, tells me and my husband how much he hates us…. and that’s just the beginning. We can’t reason with him when he is like this. We can’t reach him.

I wish I knew how to reach him. Last night, once things had cooled off some, my husband asked him why does he react like that? And that little seven year old boy was able to articulate: “When I get angry like that, I lose control of my body and just can’t stop. I need help mama and papa,” as the hysterical tears started up again.

I did the only thing I knew how. I held him tight, and let him know I loved him.

I’m hoping to find some answers in this book. Has anyone read it? I’d love any and all suggestions!