What I wish my IEP team understood.
I literally don't sleep the night before an IEP meeting. I can't hold a single thought in my head because it's overcrowded with preparing my retorts, wondering what they will say, wondering if they've given up on her, coming up with my own behavior plans and supports that we can add, preparing for the analyzing of my daughter.
The day of the IEP meeting, there's such a feeling of sadness and grief knowing what's to come. Because the truth is those few positive notes that you start your meetings off with and that sometimes seem like such a stretch, I wonder if that's all you could come up with, they're great but they don't make up for the hour and a half of negativity that always follows. Look, I see you doing your best to sound positive and upbeat and I do appreciate it. I can even see that you care about my child and want to help, really I do. I see the time, energy and work that some of you have put in and I'm so thankful for it. I know your job is difficult and you do the best you can. You have a job to do and you have procedures to follow, I get it. It's not you I blame, it's a system that hasn't advanced much beyond what education looked like 20+ years ago. We know so much more now, we should be doing better. I also am fully aware of my daughter's strengths and struggles. This isn't news to me and I'm not in denial. I'm a mother who expects more from a school system that continues to fail children of all different needs. I'm a mother who knows the importance of an inclusive education so that my child can grow up in an inclusive world. It starts now, not next year, not in 10 years, not after high school- now.
Of course it's not easy. Again, I'm not in denial of my child's struggles. But I do believe there is a way to include every child. And I believe in a school system where there is education- not special education versus general education. Just EDUCATION. That should look different for every child, not just children with a diagnosis. If a child needs extra help, bring it to them. If they need time out of an overwhelming situation, give them some time. If they need an assistant in the classroom, hire one! I get that some kids (mine included) can get distracted or overwhelmed in larger classrooms. Segregation is not the answer. We have to teach them how to integrate with the rest of the world. It requires commitment, time, energy, resources and yep, money. But an equal education for all kids should not have a price tag on it.
The school systems often seem to take the easy or cheapest way out while our kids suffer. Research shows that children who lack inclusive education opportunities are less likely to be successful adults- less employment, more depression & feeling alone. We have to start doing better. We have to stop being scared of full inclusion. Research also shows that children with special needs are more likely to be successful in an inclusive environment that is safe when they have the supports they need.
So, Team, when I come off angry, sad, resentful, lost or confused, I want you to understand my side. The truth is I want you to feel my pain and sorrow. That sounds terrible I'm sure, but I feel like empathy is the only thing I have on my side. I want you to know that I'm not sad that my daughter has Down Syndrome or that she needs extra help. I'm sad that we haven't found a way to fully include her with success. I'm sad that I don't always know how to help her and I'm suppose to because I'm her mama. I'm sad that she can't tell us why she's having a hard time. I'm sad because I imagine how lonely she must feel at school when no one seems to be listening or understanding her needs. I'm angry about the process that we have to go through to get an equal and fair education for our children that learn differently. I'm resentful of the fact that when something is not working, it's our children that are always required to adjust, conform or be excluded. I'm lost because, sometimes I feel like I'm fighting a battle I can't win. I'm talking to people who can not truly understand how I feel. I'm confused at the data that gets thrown at us and how some of it is even relevant to her abilities. I'm lonely! Even among a community of amazing parents of children with Down Syndrome, I feel alone in this fight sometimes. We are a minority and we are often still treated like it.
Team, I love you and I respect you but I need you to
understand what it's like for me to enter that room of uneven sides. Know that it's not personal to you but it is to me.