Speaking Up.

I remember back in law school there was a required class. You presented an argument in front of real live, Appellate Court Justices from the Court of Appeal.  These justices (3 or 4- I can’t remember now) would hear oral arguments.  They would interrupt with questions which we would not know ahead of time.  We would be videotaped and we would receive a grade.

I felt like I was here (United States Supreme Court) I was at my law school...

As a broadcast journalism major, you’d think I would be more than ready, willing and able.  Nope.  I was terrified.  That was the most terrified I’ve ever been in my career.  I prepared like crazy.  I knew my argument.  I knew my opponent’s argument.    I stepped up to the podium.  All eyes on me.  As I began to speak, my heart was beating a thousand beats per second and I swear it grew so large it came right up in my throat and I almost had an aneurysm.  No one was the wiser.  I calmed down.  I lived.  I succeeded.  I was asked to join the team to compete against other schools.  No thanks, I said.  Enough.  I’m done.

But, I wasn’t.  I continued to make arguments for lots of people.  People who were mistreated, scammed, who lost loved ones, who came close to dying from neglect or just plain bad acts.  I have stood in front of juries.  I’ve won and I’ve lost but I’ve always spoken up for others.  That’s what I do.  That’s been my life.  For more than 20 years.  (and yes, you can just think of me as the female Doogie Howser of law – too young to have that much experience).

Then, something happened that changed my life.  My son.  And not just my son.  My beautiful, love of my life, son who happens to have autism.  He took my life in another direction.

For the first 3.5 years of his life, I did not know my son had autism.  I did not know what autism was.  I just knew motherhood was really hard.  Harder than arguing to a jury.  More draining than preparing for trial.  He was more difficult to communicate with than the most seasoned of witnesses.

One winter day, our pediatrician dropped the A-bomb (autism) on me at Christmas time.  I panicked, cried, worried, researched, sought help and never slowed down.  I ran into brick walls.  I cried again, changed direction and charged forward.  I found a beacon of light in my behavioral therapist.

Behavioral therapy is very expensive because it requires a whole team to help your child.  There are tutors who work with your child up to 8 hours per day.  There is a pyramid of a team topping out with the actual therapist.  They meet weekly to assess progress, to determine changes and additions to programs, all centered around helping this one child to succeed.  To reroute those misfiring synapses within the brain.  With early intervention, there is proof of dramatically improved behavior.

And the therapy is phenomenal.  The therapist and the tutors made progress with my son that I did not know was possible.  They elevated his ability to function and made me hopeful for his future.

The therapy is paid by funding from the state under certain acts of law.  By federal and state law, a FAPE or free and appropriate education for children with disabilities is required for every disabled child.  But there are tricks and red tape and meetings that take place involving the funding sources.

If the meetings result with opinions that certain services are unnecessary or no longer required, or if the funding sources believe another therapist or a replacement within a school system will do, they can revoke funding or redirect the services to other providers.

I started receiving funding for my son during the summer break from school.  Only the state source and not the school district was responsible to pay for therapy.  When school commenced, the school district, which is required to participate in that funding, scheduled an IEP (Individualized Education Plan) meeting.  In that meeting, I was aware they could take away funding of my son’s behavioral therapy.

So, after four, long, tiring years spent mostly mothering my special needs son without a lot of sleep, I had to put on a suit, gather up a posse and go in to a meeting to make an argument.  I had to speak up for someone who could not do it himself.  Only this time, it was for my son.  My special needs son.

There is no greater client.  There is no bigger outcome.  There was no more important legal argument to win.

I was scared.  We are all scared as parents going in to IEP meetings.  We may be angry, tired, dejected, feeling trodden on but with all the other emotions, we are scared.  We know these meetings result in services that can improve the lives of our children.  We know that the school and the states hold the power to make this happen.  And we know there are loopholes from which we can be taken advantage of.

My therapist (an expert) guided me through it.  We did not sign anything.  We stopped the meeting and came back for a second session.  Miraculously, I was offered everything I’d asked for my son during that second session.

I guess, when I spoke up for my beautiful, communication impaired son, I hadn’t lost my touch.  He won what he needed.  And he continues to amaze me with new skills every day.

This was inspired by Mama Kat’s Writer’s Workshop.  You can find her by clicking the sidebar or here.  She provides a list of writing prompts on Tuesdays.  The links to posts based on the prompts go live on Thursdays and stay up for a week. 

The prompt?  Describe a time you spoke up for someone who couldn’t speak up for themselves.

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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16 Responses to Speaking Up.

  1. Ugh. I remember our first IEP meeting and how terrified I was. Like you, I was fighting to get Little Miss the therapies she needed from the school district — things we could not afford to provide on our own. I think I followed a lot of your advice at the time — waiting to make sure I agreed with what was needed, having all the information ready to present in an orderly manner… once again, it make me glad for our long-distance friendship 🙂

    • solodialogue says:

      I too am grateful for our long-distance friendship, my dear. You have taught me many things about patience, love, self-confidence, belief and weighted blankets (Lol!). IEPs are difficult. As moms of children with special needs, we must add speaking up for our children to our resume and it sure helps to know that we are there to support each other, if only by written word, when we need to do so.

  2. Julie says:

    Go Mama!!! I agree, my first meeting was terrifying. I was ready for a battle. I was almost disappointed when I didn’t get one. They gave me more than I thought we were entitled to.

    I think the trick to this is being fair (not asking for ridiculous things the school has no business providing) and being firm and being just scary enough – that they don’t $!$# with you or your kid 🙂

  3. As a former teacher that sat through many IEP meetings, I loved to hear from mom’s like you! Mom’s that knew their child, knew his wants and needs, and asked for them clearly. Way to go!
    🙂
    Stopping by from Mama’s . . .

  4. Teresa says:

    Well said! Depending on the school staff may be more or less receptive to your concerns. If parents have had a poor experience or are in the least unsure of the school response I always recommend taking someone to the meeting. A spouse, parent, friend (one or more) just coming to sit next to you can be reassuring and make the “experts” seem a little less intimidating. We must speak for our children, we are their best advocates.

    • solodialogue says:

      Thanks Teresa. I defer to your years of experience on school staff. I’ve only just begun having these meetings. But taking someone who you are close to is a very good idea to help reassure us when we must advocate and speak up for the best interest of our children.

  5. Jessica says:

    Good for you for fighting for your son and speaking up for him when he could not. My sister had told me her frustrations with my nephew’s school and IEP. It sounds difficult and I’m sure some people probably give up. I’m glad to hear you didn’t.

  6. jane@flightplatformliving says:

    oh my goodness, i have been there! go go go mummy bear! sometimes we dont realise the fight we have in us till its for our kids! my eldest is a beautiful beautiful girl with smith magenis syndrome and boy i have become squeaky wheel fighting mummy from hell for her! much love, great to find you at mamkats x

    • solodialogue says:

      Jane, you are a cute writer! I bet you speak just as you talk and it is adorable. I must confess that I had to look up Smith Magenis Syndrome and you definitely have your own set of challenges, just as do I so I know you understand exactly where I’m coming from. ((Hugs)) and thanks for stopping by. 🙂

  7. Aspergirl Maybe says:

    I definitely have become a much stronger person from having to speak up for my son, although I still have a long way to go.

  8. eof737 says:

    You did a great job with the IEP and all those years of legal training came in handy. That picture of your son is gorgeous Karen. Keep up the good work. 🙂
    Eliz

  9. Frelle says:

    beautifully done, i enjoyed learning more of your story, and hearing about the process to advocate for your son.

  10. Lynn says:

    I can see where your legal training would come in handy…and yet…isn’t just a completely different ballgame when it’s your own child?

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