When I was a kid, whenever I ever asked my mother a question, her answer always started with “the Mother’s Handbook says…” Then she would make some ridiculous answer up, and yet somehow I still believed her every time. So, when I became a mom I was quite disappointed to find out there was no “Mother’s Handbook.” However, I was proud to hold up this tradition with this fictitious handbook. So each time my boys would ask something I knew was a no, my answer would always start with “according to the Mother’s Handbook….” It was great until it wasn’t.
What I quickly learned was there was no handbook with instructions on raising a child with significant developmental and mental health needs. Fourteen years ago, my husband and I adopted a child from the foster care system when he was 5 years old. He was developmentally behind; however, as a social worker I knew that children coming from the foster care system are often developmentally behind given the lack of structure, neglect, and/or abuse they had endured. What we had no idea about was the amount of developmental delays our son truly had.
Over the years, our son’s struggles continued. It wasn’t until he was 16 that we got an official diagnosis of Intellectual Disabilities. At this point he was already diagnosed with PTSD, Learning Disabilities, and Receptive and Expressive Language Delays. A diagnosis of Intellectual Disabilities just pieced all these other concerns together. Finally, we felt like things were going to get better – we had a diagnosis, understood what his needs were, and began getting services set up through school. But we were terribly wrong.
At 17, our son began acting out beyond “normal” teenage boy behaviors. We started noticing more and more that his behaviors were escalating beyond those of teenage boys with developmental disabilities, too. In 2021 our son made five trips to local emergency rooms in a mental health crisis. With each emergency room visit, we realized there were more mental health needs than we could safely handle at home. It was at this point that this Momma Bear had to become a full-time advocate for her son.
Now, it is important to remember that at this point, I had been working as a social worker for over 27 years. Advocating for my clients was nothing I was unfamiliar with and actually, I happen to be really good at it. So, I never thought our son’s journey would be so hard for me. I knew the system and knew what my son needed (or so I thought). GUESS WHAT!? Turns out I couldn’t have been more wrong. Advocating for my clients is incredibly different than for my own child. With a client, there are no emotions or attachments. With my son…. Well this is my son. What mother doesn’t want what is best for their child?
I had to push. I had to scream. I had to cry out to people. I called anyone and everyone I could, and in each of those situations I just sounded like a hysterical mother. I assure you I wasn’t. What I was, was a mother with a new found purpose: To ensure my child, who cannot advocate for himself, would receive the appropriate services he not only needed, but was eligible for.
However – the system isn’t built in a way that makes it easy for families to do this self-advocacy, and the hurdles I had to overcome were extreme. I had to consciously change the way I talked and my reactions when advocating for our son. This meant challenging the choices and resources I was being led to, all while trying to keep my composure as a mom.
Because the fact of the matter is, I know the system - inside and out. Twenty seven years as a social worker taught me how the system works. I knew how to phrase things in applications for services. I knew what the next step was. But despite my extensive experience, the reality was, my son was just another number, another body taking up space in an emergency room that could be for someone in worse shape. What upset me was that it felt as though the system did not see my son as someone in a mental health crisis. It felt as though they saw my son as simply acting up. This was not my son, my son was such a kind and gentle giant, who loved animals, riding bikes, playing video games, and being around others. What was happening was my son was having psychotic episodes, later being diagnosed with Schizophrenia.
As moms, society still wants us to be caregivers in our homes but also still go out into the employment market. We are expected to birth a child, care for our family, “keep house,” as well as supply financial help to the household. Now add in a child with any sort of disability, and our worlds are torn upside down. The system of care isn’t built for ease of access - and I wish moms weren’t expected to do it all PLUS navigate confusing systems and FIGHT for help when our children need support.
To all the Momma Bears out there advocating for their child/ren: I see you. I hear you. I stand with you. Keep fighting and advocating for systems of care that actually work for our children and all our families.