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. 😉
Heather Nelson

About Heather Nelson

Heather resides in Rockland where she is busy juggling life as a newlywed, a mom to two boys (one of which who has autism), a part time job in direct sales, and a full-time job as a pediatric occupational therapy assistant. She has a love for live music, karaoke, and cheering on the underdogs.