Thursday, December 1, 2011

Continuing the Fight

If you've been following along at all on this blog then I'm sure you are familiar with our struggle with our local school district.

In the past few months I have obtained legal advocacy, evaluations, and had some very interesting IEP meetings.

Today was another one.

Three hours long.

The longest IEP meeting I think I have ever participated in as a parent or as a practitioner.

In the middle of the meeting I took the moment to address the team and tell them that everything they were laying out on the table sounded wonderful.


And I emphasized the word.  Because  I feel like I've been hearing about these changes but not seeing them.

I reminded them that we are nearing halfway through the school year and the ENTIRE school year thus far has been a waste of my son's time.

My son is not there to be taken care of as if he's in daycare.  He is there to learn.  It may be harder to teach him and to figure him out but that is their responsibility.  He has a right to an education.

The feeling of the room was somber and there were a lot of nodding heads around the room.  I, honestly, think they all agree with me, yet because everything is so fragmented and there is no background, experience, education, or training going on they do not know how to do it.  Again, not Brian's problem.  It's their problem.  They have a real problem on their hands.  

Agreed upon today was training (who would've thought it?  autism training for an autism program? huh?), hiring an autism specialist consultant to be used on a continuous basis, weekly 30 minute meetings for his entire team to get together and discuss him, adding TouchMath and Project Read to his curriculum, lunch bunches, increased time in Special Education, hiring an AAC consultant for continuous use (monthly), an individualized structured sensory diet with regular sensory breaks every 30 minutes, and new data sheets to track his engagement.

I'm again feeling a range of emotions.  I'm feeling sad for the time that has been wasted and the growth that we could have seen if his programming had been up to par to begin with.  I can't believe how much easier it is to get what I want when I have an advocate in the room.  Unbelievable because  I have asked for some of these things in the past and always been told it wasn't possible.  

I'm feeling proud for not giving up and continuing to push.  I'm really being positive that because of this whole situation all of the kids on the spectrum at Brian's school will benefit.  I'm hoping I'm shaping a program for all of them.  

When I left the school today a staff member that I don't even know other than seeing her in the hallways stopped me and asked how my meeting went.  I told her it went well.  She asked if it was done.  I told her that we had some more evaluations and consultations so we would be meeting again shortly.  She shook her head in disbelief over the time we've put in so far and she said, "We've all been rooting for you Heather.  We think it's amazing what you're doing to make sure Brian's rights are being met."

And with that I smiled.  It's nice to be acknowledged for the fight that many of us parents of kids with disabilities have to do all the time.  It's hard work, but we do it because we have to.
We do it because they are so darn cute. ;)


(Single)Mommy said...

Keep pushing you're doing great!

Jen Troester said...

It is amazing how much they agree to when you hire an advocate. That same thing happened to us. They gave us crap I had always asked for, but once she was in the room they stood at attention. Even though I still did most of the talking, just her presence made a should be THAT hard!!!! We are on draft 3 of this year's IEP...waiting for it to be mailed home. I  hate this stinkin' process. 

Lana Rush said...

You should feel very proud of yourself.  It may not be over yet but you've pushed, prodded, and kept on.  Not only will your son benefit, but others who follow him will as well.  I bet even the teachers and administrators have learned something along the way.  Good job, Mama!  :)

Lana Rush said...

By the way, I'm over at (can't figure out how to make my name a link) No big deal - just wanted you to know where I'm "from".

Lindsey C said...

It is amazing the lack of education "most" ed-tech's or specialists have in the public school system. It's very sad that we have to intimidate them with an advocate to finally agree with things we have deen saying all along. I am dealing with the same thing at my
daughter's school, so you are not alone in your fight. You are giving your son the words he can't say, yet. Good for you Heather!

Gina Fry COTA/L said...

Heather, I am utterly humbled and amazed by the advocacy work you are doing for Brian. Based on  the self-reflection discussions we had at school I am awed at the  courage you have found to face potential confrontational situations and assert yourself for what is in the best interests of Brian and many other children. 

Lizbethcole29 said...

Keep fighting sweetie, keep fighting.  You're doing great.  

MarsupialMama said...

Thanks for sharing your story...  It's an inspiration for those of us who start feeling a little burnt out.  Thanks for the second wind!  :)

Tessa said...

You CAN do this.  It WILL happen.  I'm am in awe of you, sweet friend.  Brian is a lucky little man to have such a strong advocate for his mommy.  Keep fighting and don't give up.  God bless.

Heather St. Clair said...

That is a big deal! I love knowing where everyone came from!

SensorySpectrumShop said...

heather, love your blog and your past two posts especially. iep meetings suck and i never leave happy. usually leave crying. i don't want to troll but i can't find any contact info for you and i wanted to talk to you about my website its a new online shop dedicated to kids with autism and their caregivers. we donate proceeds to fund special needs programs and autism research. pls contact me at to chat about endorsement possibilities. btw, i LOVE LOVE LOVE your Santa letter, it was so funny and true,  it brought tears to my eyes. Do you mind if I share it on my website?Marybeth