Today I cried for a different reason.
It is hard to know what to write about certain things. Walking the line between my story to tell and my children’s’ stories to tell is very difficult. Our lives are so intertwined that it is hard to know what is strictly mine and what is theirs.
My children have various learning disabilities. Challenges? Brain differences? I don’t know what the “correct” term is anymore. If they went to public school they would have IEPs and we would go to ARDs. They would be part of the special education department.
I can tell you one term I don’t like: SPED. I feel pretty confident I used the term when I taught school. But when you sit on the other side, the parent side? That abbreviation that has become its own word feels gross and bad. When I hear it, it makes me feel sick. They don’t mean it that way. But to this parent it feels like the new word for the R word that we just don’t say anymore.
We have been in and out of therapy since 4 months old. Most therapy started in earnest around age 2. I once asked our early intervention social worker a question. She told me that some of the things we were seeing were due to inconsistent parenting. I was new to this world of special needs. I agreed. I mean, every parent on the planet could probably be MORE consistent. So we tried. Of course we saw some improvement but it certainly didn’t solve the problems. Anyway, I asked her how we would know if what we were seeing was a real problem or just because I was a bad parent. (I probably didn’t word it quite like that even though by that point I was annoyed with her and was probably thinking it.)
She said, “Real issues never go away, they just change and morph as the child ages. You see the problem grow with the child.”
It didn’t take us long to know we were looking at real issues with the one in question. (The other one had an official diagnosis so we weren’t bad parents to that one….just his twin.)
I have never forgot that conversation. I have watched the struggles our children have grow and change over the years. We find ways to help them. I research and seek out new therapy. It never stops. Ever.
Today as we worked on a home program to address a specific issue it became clear to me that it was time to start looking for a new specialized therapist to address the issue. I blinked hard to force the tears away as I watched him try and fail to make his brain comply.
I hate these moments. They always sucker punch me. You NEVER get used to seeing your child struggle with something outside of their control. No matter how many times your child is tested and how many times you sit in meetings and hear the below age level results, it never gets easier.
I think I found a place that can help us. It is the benefit of living in a large metro area. Mom and I talked about it in whispered conversations. They help us. They support every decision and test and therapy we have ever sought out. Nathan’s family does too. We are lucky because we know so many who wouldn’t be as lucky to have such supportive families.
I had to drive to the bank to sign paperwork dealing with fraud on one of our debit cards. (I really wish people would quit hacking in and stealing information. It is very inconvenient.) As I drove I finally couldn’t stop the tears. They just fell down my face as I drove. I didn’t sob loudly or cry hard. They just leaked out and I couldn’t have stopped them if I had tried.
That is what it is like to be a parent of children who aren’t like everyone else’s. Some days are hard and it hurts. It feels extra hard because when you look at our boys it isn’t immediately evident that they are different. People don’t extend them the same understanding and courtesy afforded to people who have more obvious special needs.
Some days I feel so alone. Friends can empathize. They listen and try. I appreciate every single one of them. But they don’t live the life. They don’t know the anguish. I don’t have many friends who have kids that have brain differences like mine do. That’s okay. I don’t have time for support groups and play dates with people like us. We have school and I work full time. We have co-op and currently we have therapy twice a week. That will probably increase soon. And Nathan has football and work.
Today was lonely and hard.
Tomorrow we will try again. It might be a better day. It might be worse or the same. But we always keep going and keep trying. I won’t give up because I can’t. Its their lives after all.
More Than Expected 