The Skinny – Amy Brunell

Today I participated in my last IEP. And IEP for those of you fortunate to NOT KNOW, is an Individualized Educational Plan. It is the legal document and process for children with challenges to obtain services during school hours. I came in literally dancing and singing about my last IEP EVER and hugged my rep from the district. I’m lucky now. Not always. Now I love my rep. I have been supported these last years, unlike previous times. Oh those times…

I have been attending IEP meetings about 18 years now. I have two kids with identifiable challenges, i.e. diagnosis, and I’ve known for a little longer than that, my journey as a parent was different than most of the other parents at the pre-school.

I wish I had never had to have an IEP for my kids. I wish I didn’t know about IEPs, 504s, the law, accommodations, services, mediators, advocates, P.T., O.T, Speech, A.P.E., Resource, Counselor, Therapists, Therapists, and Therapists, and all sorts of experts, services and resources that I can rattle off my fingers.

I wish that I could say that within the world of Special Needs, things have improved a lot. Unfortunately there is still an underlying belief that a regular school with accommodations is the best place for children. And after two kids who were in public education and then with an attorney’s help, placed in private schools for kids with needs, the belief that the regular environment is better, is wrong for many children.

It reminds me of the argument that babies should sleep in their own rooms. For some families, yes. But for others it goes against the child’s nature. The parents are just made to feel wrong when they pay attention to their intuition instead of the belief of the societal culture.

My kids have benefitted from smaller classrooms with more attention paid to their difficulties. They have benefited from adults who work with their population and understand the ramifications of the child’s challenges.

My oldest son didn’t get enough time in the smaller private setting. He was placed at the end of 10th grade. By then we had attorneys involved and he was going on his 5th year with zero friends. By the time he graduated high school, he was just beginning to take risks getting to know his peers. Unfortunately, he didn’t continue any relationship with those peers.

His IEP from grades 1 through 12 is a paper tomb of reports and notes. I cannot throw it away, but I cannot read it either. You see my son is in college, he is going slowly, but he is earning a degree. However he still doesn’t have any friends. And his disability is such that it will be almost impossible for him to find a job, especially with the competition for even entry level jobs. And I’m angry. And I feel pain and fear. And there’s nothing that I can do about it.

I advocated so very hard. I tried so many things. Some say to me that my child does as well as he is because of my work. I’m sure that’s true. But when you see someone you care about suffer, it’s difficult not to question decisions that were made from the past. Useless to question, but never-the-less, very human to question.

I want to hold someone accountable. I want someone to reassure me that no matter what happened, the result would be the same, that I didn’t make a right turn when I should have made a left. I want to stop questioning the district and myself for all those choices reflected in those IEP’s. Unfortunately, many decisions that were made for my son was not for his benefit but for the cost-savings. That was considered more valuable.

Americans don’t really care about education in this country and we know this because of how little education is funded. Teachers and staff are not paid nearly enough and the resources and tools needed to benefit children are not available. We believe in an unequal system of resources so that only those who have money are allotted the resources. We believe that some children deserve more than other children. That is harsh, but it is the underlying belief that is proven in every major election.

And I’m still angry. I angry at how powerless even after all these years I feel within my psyche that I can’t fix the past. I can’t fix those people who made poor decisions based on their own understandings of what was valuable. My child suffered. Other children suffered. Who can fix that?

Parents expect the staff of schools to know more than they do. They don’t often know what to do. I was shocked how many times I had to have this sort of conversation:

Me: Well I know my child isn’t the only one with this challenge. What kinds of things have worked with other kids in the past? What strategies have you employed effectively?

Them: We haven’t had anyone like your child.

Me: Really? I find that difficult to believe since we know that even Einstein was on the spectrum.

Them: (Shrugging of shoulders.)

or

Me: My son still hasn’t any friends. You can’t get a job in life if you don’t know how to make friends.

Them: It’s not an educational issue.

Me: Well then why do students collaborate on projects?

Them: Yes collaborate, not friends.

Me: I don’t care about his grades if he’s passing. I care that he can’t talk to anyone in a meaningful way.

Them: He’s doing fine. You should have seen him (naming one example to prove me wrong.)

Me: Great. How is that generalized into his larger world?

Them: He’s very funny.

And on and on it went. As he aged, he got further and further lost when the social world became more difficult to navigate.

What can change? Accommodations and services available should be listed so that parents know their choices. Often parents don’t know what they can ask for because the information isn’t obtainable. There needs to be strenuous education provided for all staff and teachers about special needs children and effective strategies that can be incorporated. Often only educators in the world of Special Needs are the ones provided with the education. The General Education teacher doesn’t get the same benefit and yet there is some belief again, that children should be integrated into a regular educational setting.

I continue to advocate for my adult sons. I continue to offer what I can. Their journey is different and is theirs to have. I must let them have their own lives in whatever way that is for them. I must remember they are in the world. They are doing it.

But those IEPs…They haunt me with “what-if’s.”