My name is Danielle Fienberg. I am here to talk to you about our journey through the infant and early childhood mental health system. My family includes my husband, who is an autistic adult, myself, and our two kids – Theo, who is 6 and has developmental disabilities, and Winnie, who is 4 – and our two cats.
We knew our children would likely need support for autism or ADHD because it runs in our family. We started to ask for help for Theo when he was around 18 months old. That was the first time I called early intervention, and they told us they could not quantify a social-emotional delay or behavioral delay of 25% or 33% with the tools they had available. So because he could walk and talk, he was not eligible. We found out Theo was lead poisoned 6 months later and we asked if early intervention could give him some in-home services to better support our family with his behavioral problems and we were told no again.
We placed Theo in what we thought was a high quality, good childcare program and he didn’t last 2 months. He was 2 at this point. He was expelled for biting – he went from, “This is a great kid. He’s so smart, he’s so fun” to “Take him home. He can’t come back,” in a matter of days. Early intervention at this point had already said no twice so I went into my insurance provider and tried to find him some sort of therapy or care from a child psychologist or social workers and nobody would see a kid under 7. This was affecting Theo’s self esteem – he was 2, and he knew he hadn’t been wanted at the daycare. He called himself a bad baby all the time, which just broke my heart. How do you explain to him that you can’t go because of your behavior but you’re also not a bad kid?
The advice we got from other parents and even pediatricians was that it was our fault that we weren’t parenting him appropriately and they were just tantrums and he didn’t need anything. Finally, I found a therapeutic nursery program – one of the few that would take kids with aggression issues – and they gave him parent-child interaction therapy which included us. They taught us coping skills and him coping skills. Our life dramatically improved. Unfortunately the state decided that other programs needed funding more and the program closed before we could fully benefit from it.
We have had so much trouble finding the help that Theo needs, but when he has the supports that he needs, everything in our family and everything in his life becomes so much easier.
