I never thought I would see a situation that is worse than that of children with developmental disabilities in the state of Virginia. I have. It’s that of children and adults with mental illness in the state of Virginia (and many other states).
My husband and I are tired. We are exhausted. Little Man requires us to find ways to simultaneously keep him stimulated and regulated to avoid hour-long rages. We have to find ways to minimize his stress, or risk hallucinations and/or aggression. It’s fatiguing work. Worth it, because he is able to experience more joy. But fatiguing.
So we have been seeking out supports for our family, and finding out that it’s kind of a joke. He cannot qualify for most of the waivers here, because his developmental delays are at least partly attributable to his mental illness. It apparently does not matter that he functions like a 2-3 year old. It apparently does not matter that he is at a greater risk of out-of-home placement. It only matters what his current labels are. Little Man cannot participate in after-school and weekend activities with his typically developing peers, whether it’s gymnastics or swimming. It’s too much. The expectations are too high; the stress level is unbelievable. Yet most of the special activities & programs in the area are also tailored towards children with intellectual disabilities. I can access services for my daughter who, though requiring lots of assistance, is not going to hurt herself. She is not going to hurt me. I cannot get help for him.
I finally just emailed the school and asked them if we can consider adding “intellectual disability” to his labels at his upcoming eligibility. I was frank and said that we are seeking outside services, which require this label. I figured that I had better odds with being honest. (I did also mention that his recent appointment with the developmental pediatrician expressed concerns that there were underlying cognitive deficits.)
Here’s the thing, though, world… Everyone should get help. Everyone should have a chance to live a fulfilling life. It shouldn’t be about labels, at all. We should say — what does this child need? Where is this family hurting? But, even if it can’t be like that, I think it’s even more important that these people who pose a danger to themselves and others be able to access services. If we help Little Man now, perhaps he can graduate, hold a job, live a fulfilling life. He can “pay back into” the system that helped him find his footing. If we don’t… I don’t want to think about what could happen.