Thursday, September 22, 2011

Finding My Voice

I was actually going to delete my blog from last night.

I've not really considered the Mom Cave to be a place for pure venting. Venting really isn't my style, anyway. Observational humor...sure. Venting? Nah.

Yet, thanks to some kind friends on Facebook who responded to the post, I started thinking of all the times I have taken on battles in the name of my kids.

It's what parents do, after all.

With parents of special needs kids, the battles rise to a whole new level, and the amount of animosity generated astounds me.

Oh, sure, I had some experience with it while both of our sons were in Early Intervention here in New York State. But, really, in retrospect, we are pretty fortunate here. We had coordinators to fight our battles. And, our older son's autism services were offered by an agency that equally fought battles for me.

I'm sure at the time, I might have THOUGHT I was a warrior, but I didn't know the true meaning of it until the boys entered the school age system and until their needs became more complex.

The very first year our older son was in the school age system (kindergarten) and had an Individualized Education Plan (IEP), the battles started. We hammered out an IEP to meet his incredible health needs within a public school setting, hoping he could make it. I had my doubts. His gastric system was so weak, I was afraid that we would need to have services pushed into the home. The IEP was very specific. It was weighty; however, if followed, it could quite possibly work.

And, within that first week, I learned for the first time that you can give a teacher and her staff an IEP and therefore make her handle your child in a certain way, but they don't have to like it. And, when they don't like it, they will reserve the right to blame you, the parent, for it.

When my son was five, I learned how it felt to receive the animosity they felt for having to work so hard because of the level of his disabilities. Some were so angry that they challenged us, saying there was no way our son have such issues.

Each day I walked him to school, and I pretended that I did not see the angry looks.

Several times a week, I stood up to challenges by personnel who wanted me to believe that the number of years they had in the school system trumped my few years of being a parent.

I don't discount professional experience. Most of the time, I welcome it. I find my job to be difficult alone. However, there is no professional that knows my child better than I do. Not one. And, I think it is short sighted for anyone to lay claim to such notions.

That first year brought out the fight in me.

It was automatic. It was instinctive. I saw my nonverbal child walking into a group of people who were unable to sit rationally at a table to work out a positive path forward for his education. Rather, they decided to take their frustrations out on me.

It was my first taste of how it felt to bear some of the burden my children might feel today or one day for the disabilities they have.

Tell me, why is it our disabled have to fight so hard to get what they need in this world?

Why is it that we make those that need the most help search in the dark for answers to their problems?

That first year in school when the placement wasn't right for our older son, they wanted me to stop bringing him to school. They wanted me to put him on a bus and send him into that Lion's Den. But I refused.

I was always friendly. I even brought teacher's gifts when appropriate. But I walked him in every day. Because there is no way either of our kids is going to walk alone. The notion makes me fighting mad.

I am a person who does not enjoy public speaking. Attention bothers me. I don't even really enjoy my birthday--although turning 40 was one for the record books! I'd usually prefer to blend into the wall without making waves. However, having these two children has caused me to find my voice.

I use it with doctors, teachers, therapists, administrators or even just people on the street. I use it because right now they can't.


  1. Oh the battles! I've just had a quiet couple of months since Ben's last statement review (a statement is the gold dust like document that has statutory status -they avoid giving them relying on non-statutory IEPs). But this week on Monday morning at 8.30am I met with the High School Special Needs Co-ordinator - this evening Ben went for his first visit to the Hgh School - tomorrow I am ringing the Local Authority Education Department. It's going to be a long year of battles :(