School is AWESOME

It’s been two months- TWO MONTHS!  Since R started school.  I’ve written a lot about our efforts to transition R to school prior to his start date due to his severe anxiety- a process we spent 5 months on- and which was wildly successful.  You can read about it here, and about his resulting fabulous first week of school here.  I was hesitant after that amazing first week to write more about how great school was going, in fear of somehow jinxing it.  But the past two months have sped by and there is so much to share.  R has learned more skills in the past 2 months at school than he learned in the previous 18 months of full time in-home therapies (ABA, ST, OT, DT).  Here are a few of the highlights:

R is understanding and able to use a first-then board

R is continuing to learn to use PECS

R learned how to turn a container over to dump the contents

After initial help with hand placement, R is able to hold a bingo dobber (kind of like a chubby marker) and can independently make about 3 dots with it

R learned to jump with two feet (!!!!!!)

R learned how to clap his hands (!!!), and can *sometimes* respond to the receptive direction “clap hands” (the data says 8%, I’m just excited that he understands the language!)

R tolerated exploring paints, holding the brush, and making some paint marks with hand-over-hand support!  A BIG DEAL because he has been terrified of paint/art stuff prior to this

And just this week, R scribbled with a crayon for a moment all by himself for the first time!

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R exploring paints at school

I feel like R is truly in the best possible environment at school and that is why he is thriving.  He is supported by such an incredible team of dedicated, caring, skilled individuals.  I think what truly makes it so successful is that the team all work together.  There is so much carry-over.  His ST, OT, sped teacher, and aides are always sharing information, ideas, and tips, often observing each other working with R, and so it’s just a really well rounded team approach to each challenge R is working on.  We are currently in the process of finding out if R needs PT added on.  His teacher and OT have both shared some concerns with the school PT, and I sent a request to evaluate for PT along with some of my own concerns.  I love knowing that everyone at school wants what is best for R, not what is cheapest for the budget.  The other thing that I really appreciate is seeing how much they all care about R.  It is written all over their faces that they adore him.  I would have expected kindness and professionalism, but it is clear that beyond that his teacher and aides truly seem to love him, and R seems to love them too.  He is almost always very excited to arrive at school, and is often reluctant to leave.

 

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R’s Valentines baggy from school
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Valentine from R’s teacher to him

Seeing how much he has flourished in just 2 months, I can’t wait to update at 6 months or a year!  Here’s to hoping for many more great things to come. ❤

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Invisible Disability

My son’s school’s PTO is sponsoring a workshop to promote acceptance, understanding, and awareness of disabilities.  All of the kindergartners and first graders will attend the workshop.  The flyer home requested that volunteers are still needed to staff the various learning centers they will be setting up in the auditorium for the two days that they will be running the workshop.  I was immediately interested in volunteering, and emailed the organizer, requesting that I be assigned to the station for Autism and/or Developmental Disabilities if possible.  It never once crossed my mind that such a station would not exist. But I shortly received an email response thanking me for volunteering, but letting me know that the workshop only has stations for vision, hearing, and physical disabilities.  Apparently this program has been in place for years now, and no one has ever thought to represent Autism and other Developmental, Neurological, and Learning disabilities.  Until me.  Now.  I replied, in part, with the following:

“…I find it very disappointing that Autism and other developmental disabilities are not already a part of this program.  Autism affects 1 in 68, and with the momentum of IDEA pushing for supports that allow our children to be included in the general education environment to as great an extent as possible, children like mine now rub shoulders with children like yours in every classroom in America.  I find it deeply hurtful that at a time when education, understanding, and acceptance is most needed, an established program to promote these very same principles for children with disabilities would choose to exclude such a large population of disabled children whose at times “invisible” disability makes them incredibly vulnerable to bullying and isolation.

Who can I contact to ensure that in future years children like mine will be represented in these workshops?  I would be happy to volunteer my time and energy to help facilitate this.”

In reply the organizer recommended that I put forth a proposal to the PTO at their next board meeting and said they would look forward to my involvement in including Autism and related disabilities in future years’ workshops.

While I’m glad that I have a chance to make a change here, I still have a hard time accepting that no one has spoken up before now about this.  I would also imagine that the PTO did not consult with the SEPAC (Special Education Parent Advisory Committee) when beginning this program because I can’t imagine that the SEPAC would have let this slide given that more than half the parents on it have Autistic children!

It’s 2016.  Our children are no longer secreted away, segregated outside of mainstream society.  Our children are everywhere.  They are in your classrooms, they are in line behind you at the supermarket, they live a few doors down from you, they flap and squeal at the playground, you see them jumping and spinning at the park.  Our children are right here, and more than ever they need the understanding, acceptance, and support of their communities.  I will not let the PTO forget my son next year.  I plan to make some noise, insist that the SEPAC be included in the planning of this event, and hopefully, facilitate a change.  One little lower elementary school at a time, right?