Wednesday, November 14, 2018

How to Advocate

Being the parent of a child with "special needs" is, well, different.  And special.

Today I'm going to talk a little bit about what we have experienced within the education system because it can be challenging.  

My goal is to inform the mainstream public, who may never  have to think about such a deviation.  But more importantly, I want to give advice to parents who are in the same situation.

It can be difficult if you don't know your rights.

This blog is about advocacy.  My app defines advocacy as: the act of pleading for, supporting or recommending.  

It is not a passive word.  It is active.  It requires time, energy, research and dedication.

Here's my story to illustrate this. 

Brady P. started pre-preschool in 2017.  It started as two days a week for 2 1/2 hours a day, then went to three days a week.

I was mostly excited because I knew that would be the most socialization he would get in our little hermit lives.  He would see other kids.

He could watch them.  

He could listen to them speak.

He could interact with them to the best of his ability (which was mostly hugs and hair pulling).

He would catch their germs.

But he would be with them, and they would experience him.

Socialization at its finest.

I wasn't too concerned about academics, since I already knew he was a genius.

But here is where it was different for me.

I had to accompany him each day for the duration in case he pooped in his diaper.  The one room schoolhouse does not offer diaper-changing service.  And I get it.  I used to teach preschool at the one room schoolhouse.  That was not part of my job description, nor did I want it to be.

So I was there each day he was.  I hid out in a little office room and did administrative tasks that I could not do with a three-year-old running around and screaming for me (that was his method back then.  Now it's a polite "Mommy" and a tug on the sleeve.)

I watched the other parents drop their pre-preschoolers off, give them a hug and say good-bye.

I could not do that.

I wanted it so bad.

It was not an option.

This year started out the same.  I accompanied him each day, three days a week... dutifully, yet begrudgingly.

Why couldn't I just drop my child off at school and hug him goodbye?  When would my life start? 

Something had to change.  

Brady P. still poops in his pants (though the peeing on the potty is going really well!), so I had to be there.  Not only for that, but he needs a communication liaison.  He needs help washing his hands and eating lunch.  He needs to be told to stay in his seat.  He needs someone to pay attention so he doesn't run out the door and down the road to throw rocks at the shore.

He needs his own aid.

Low and behold, his IEP was up for review at the end of September.

What's an IEP?  It stands for Individualized Education Program.  Any child with a learning disability, behavior problems, etc. should have an IEP in place, so that child, the teachers and the other students all have a chance to work together as cohesively as possible without extra interruptions.

That's how I see it at least.  It's a way to keep the child included for the most part while making sure they receive the extra attention and support they need to thrive.

Wearing my mittens

That photo was purposely inserted to keep you interested as I talk about potentially boring factual information.  What a ham.

So Brady P. has an IEP.  

When he turned three, he started in the Special Education program which was the next step after Early On, an early intervention program from birth to three years old.  Special Ed uses IEPs.

Braeden's current Special Ed case worker (and angel, I'm quite convinced) saw the situation at the Copper Harbor one room schoolhouse.  Well, okay, I sent her a desperate email asking how we can make everything the best we can for Brady P.

She was all in.

I will interject here that we were thinking of moving to Arkansas for the winter, so Braeden could still see his dad on weekends.  So I was looking into schools there as well.

With an IEP, the needs requested in that document would transfer to another state.  So when our Michigan IEP was being written, any possible requests for Arkansas were considered as well.

Talk about covering our bases.  He could have gone to school in pretty much any state, and had his needs covered without having hours of assessments done.

Anyway, we wrote the plan for his speech and physical therapy needs.  They were adjusted as I saw fit because I learned a lot from the last IEP's mistakes.

"Can we see you more often?" I asked his speech therapist last fall.

"Well, it's in the IEP as once a month, so... we could make an amendment... but now winter is coming..." she lamented like we were kind of stuck.

Bam.  That answered this mom's questions.


If you are a parent with a child who travels down this path, please heed this advice.  Do not wait for the professionals to tell you what they think.  

Tell them what you think, and be adamant.

You know your child best.

The professionals I have worked with all do their job very well, but they cover many children.  

You cover that one.

Get what you need for your child.

That's what we did.  With the help of the Angel case worker.

And now I come full circle.

I am not typing this blog from the little office in the one room schoolhouse like I have for many posts over the past year or so.

I am at my kitchen table, looking at the sun shine on the cedar trees.

Because Braeden has an aid.

***!!!Insert happy dance and Alleluiah songs!!!***

Yes, Brady P. has his own aid, three days a week.  A local person who does not have to drive an hour through the blizzards.  Bless his heart for applying and taking on the challenge of my little man.

So do you know what I got to do each day this week?

I got to kiss and hug my little preschooler goodbye.

He does so well when I leave.

I think we both need that.

When you know how the system works, you can use it in your favor, and get what you need.  I have found the professionals very knowledgeable, helpful and pleased that I take an active role in my son's education.

Please note that I am the representative for Grant Township on the Parent Advisory Committee (PAC) for Keweenaw, Houghton and Baraga Counties.  If you know of any parents in this area who are struggling with the system, please feel free to contact me personally, or call their office at (906)289-4250 ext.181.

You can attend a meeting with us for camaraderie, support, advice or more information.  There is a lot of support in the area, and yours (if you live somewhere else) that you may not know about.

Believe in your child, and believe in yourself.  I have learned that the possibilities are endless.

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