I lost 10 years

Please note, I would never ask a therapist, teacher, ESP or doctor/nurse work during this unprecedented pandemic.  However something is happening to families whose child has special needs and we have to talk about it.  

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At Bridget’s IEP meeting in the fall I warned the team that I wanted to begin now preparing Bridget to be as independent as possible. As a team we acknowledged that at 21 years of age all school support (education and therapies) would cease and I did not want to be unprepared.  We had a plan. We had goals. We were working on those goals. Bridget was making strides. We were seeing real progress.

Then the pandemic started.

Then they closed the schools for two weeks.

Then they closed the outpatient therapy for three weeks.

How the IDEA law works is that if General Education children are not receiving educational content, special education IEPs do not need to be followed. Although the GenEd teachers were providing content, it is not graded and the GenEd students are not required to do the work. It’s a volunteer basis.

Unfortunately there is a loophole in Special Education Law, and children like Bridget fall through that hole like it’s the Black Hole.

Everything disappeared. Not 10 years from now.

Now.

Without notice, with no preparation or plan.

It took four days to receive a letter from the Director of Special Ed explaining that we were on our own.

I took a deep breath. I came up with a new plan. Not homeschooling, because I am not a teacher (let alone a special educator) and I learned my lesson trying to do homework with Abby when she was younger.  Instead I focused on life skills. We worked on baking, laundry, home economics.  I had Bridget doing fine and gross motor skills. We went to the beach and worked on sensory. While I am by no means a speech / occupational / physical therapist, I’ve been taught by Bridget outpatient team how to incorporate their therapies into our daily life.

A week or two of no school would not cause a huge regression for Bridget. There is a two to three-week break between the end of school and summer program, and again between the end of the summer program and start of the new school year.

She would be okay.

Then yesterday the Governor closed all Massachusetts schools through May 3rd.

This shit just got real.

Almost two months without special education services or therapies.  Maybe longer if Massachusetts follows what is happening in Virginia and Kansas and cancels the rest of the school year.  Doctors appointments (routine) are being rescheduled.  I received a call today that the outpatient therapies are on hold until “maybe” mid-April but to expect it to mirror the school system.

I get it, I seriously understand that the pandemic is something our generation has never seen before. I would not want Bridget exposed or have her expose one of her caregivers to illness.

I balance this thought with the very real fear that not having special education and therapies is more detrimental to her well-being.  This isn’t a grade or school transition, it is a stoppage of everything that has worked together for Bridget to succeed.

It’s all gone, as if she turned 21 on March 13, 2020 and we lost the 10 years we were promised by the school system.

To be continued…

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