The Battle That Never Ends
Getting help is SO HARD.
I’ve heard people toss around “getting help,” “getting treatment,” “getting services,” “getting support…” as if these are accessible things for parents or struggling people. I used to believe these things were accessible myself, way back in once upon a time. I’ve now engaged in so many battles for basic rights and services that I’ve realized this is going to be a constant. This is what it means to advocate for someone, and this is what people unknowingly mean when they praise a parent for being a strong advocate: That without engaging in fierce battle, children and people slip through the cracks. Or, more accurately, are carefully pushed into the cracks where they do not interrupt stressed and strained wait lists, state budgets, or insurance companies!
If this doesn’t sound super positive, well, it doesn’t feel very positive either. It feels like me and my child against the world. And because I’m not alone, here are some thoughts that myself and other advocates for people with special needs and/or mental health needs often think:
I think I spend as much energy trying to get systems and supports in place for my child as we gain from those systems or supports.
I think every good support we have fought long and hard for has disappeared before we were ready.
I think many supports we finally gained were not what they were said to be or didn’t end up targeting the right things to help my child.
I think supports are unnecessarily focused on achieving “goals,” meaning that once a child finally starts to thrive in response to supports, those goals will be seen as accomplished, the supports will be pulled, and the child will regress.
I think it’s a lot of pressure to have professionals taking notes on how your child is dressed and groomed in meetings and appointments, especially when the child has sensory issues or behavioral issues that make “well-groomed” a battle zone at home.
I think the time spent at the computer to make plans, submit documents and keep records rivals a part-time job. It is - and this is a true fact - my hobby.
I think the option to do online appointments during Covid was incredibly helpful for kids like mine. This is one hugely positive development in the last few years and I hope it sticks.
I think it’s sweet when doctors have lots of grace for my son in their office; but then the challenge of unlearning those boundaries if we end up in a different kind of office is very stressful.
I feel sad about how much time I put into trying to find help. I often feel unseen. I wonder how my son feels. I wonder if he knows how much love, time and attention goes towards trying to meet his needs.
I worry that it ultimately comes down to us. I worry that if we fall apart, there won’t be the services or support to help us build back up. I worry about that moment sometime in the not-so-distant future when my child’s struggles become the struggles of a teenager and then an adult. I’ve seen how quickly peoples’ grace wanes thin with older kids. I long to protect my son from that kind of judgment.
I know that we will keep doing the work from home. We’ll keep reading the books. We’ll keep trying to strategies. We’ll keep praying. We’ll keep leaning on our lifeline of other parents who get it; who love us; and who truly accept our son.
But I also think about how different this would all be if we weren’t quite so alone. What would it be like to be truly embraced, celebrated and supported by our larger community? How much further could we go? How much stronger would we be? And for our community, how much would they be blessed and strengthened by our incredible son?
