As I sit here writing this we are on night three of sitting in the ER with my 12-year-old son Judah, waiting for a bed in the peds psych unit. There are 5 beds in this hospital unit and 7 kids waiting, 6 of them are ahead of my son. The average wait in the ER for one of those beds I am told is 7 to 10 days. That’s a week or more in an ER room.
This is not where I thought I’d be on Friday night when this started… Hell, this is not where I thought I’d be almost 4 years ago the first time he was hospitalized. Or where I thought wed be when he was discharged with a recommendation for residential treatment at age 9 that we never got due to red tape with insurance.
This is for damn sure nothing I ever imagined for my first child.
My tiny 5 lb 9oz baby with the big eyes and no fat on him. He looked like a baby bird, all arms and legs and head. Judah was small at birth but otherwise healthy. We didn’t start to suspect something was off until he started missing milestones. First, he was late to roll over. Then, he never really crawled, walking was super late. Talking was well behind similarly aged peers. He was angry all the time, couldn’t communicate effectively and had major sensory issues that affected every part of his life and our family’s life as a whole. I couldn’t take him anywhere without a meltdown and stares from strangers. Any outing, no matter how small or mundane took strategic planning and immense effort. I dreaded leaving my house. We stayed in a lot. I didn’t have friends over. I even lost friends bc they didn’t want their kids around mine. I felt isolated and alone. A lady I went to church with suggested at 15 months old that we have Judah evaluated with our local ESD for early intervention. We did and he, of course, qualified for services right away. At 2.5 years old he saw our first Neuro Developmental Pediatrician and she too recommended more OT and Speech. So he began to receive private services in addition to ESD services at home.
When he entered preschool Judah was in an ESD group 2 days a week. In his 4-year-old year, he got into head start and had ESD services come to his class. He entered Kindergarten on an IEP and in a self-contained classroom for kids with behaviors. He never saw the inside of a general education classroom. He was bounced around our district for one reason or another to almost every SLCB class they had. No continuity or consistency largely for his ENTIRE school career from K to now in 7th grade. He had a few great teachers and staff, for which I will always be grateful, but largely the administration fought me tooth and nail at meetings. We had to fight for what we knew was best for Judah on many occasions. Often losing, and really it was Judah who lost.
When he was 8 Judah had his first admit to a peds psych unit and a stay at a Sub Acute unit, he was there 17 days. He came home for 3 weeks and we ended up in the ER again, admitted again and then 7.5 more weeks at sub-Acute. This time the psychiatrist recommended discharge to Residential Treatment not home. But bc of bed shortages and insurance being, well insurance, he ended up coming home instead.
The next almost 4 years were filled with high levels of mental health care in the community and lots of turmoil. More ER visits but they just sent us home. No one really helped us. My kid continued to get worse. Our whole family suffered. We even lost our apartment due to Judah’s behavior, which is illegal, but they got around it by giving us a “no cause termination of tenancy” on paper. When to my face they said it was bc my special needs child was disrupting the neighbors. We got a legal aid attorney but ultimately just chose to move. Luckily we found a house and a landlord who is pretty great. Although I still live in fear every day that my son will have a meltdown and break something we can’t afford to fix and we will become homeless. I have two other kids besides Judah who also have struggled, some, because of having a high needs brother. We all have PTSD and associated trauma from what we’ve gone through with my oldest son. Judah himself has trauma from being hospitalized. And yet, here we are again. In an ER waiting on a bed with every Dr and specialist and therapist, we have on our team recommending residential treatment of 6 months or longer. My son is hurting, I’m a mess, my other children are scared and not safe in my home bc of my son. So that’s why we are here, waiting…
Our system is so broken. We need to do better. Better for the thousands of kids like Judah out there waiting for beds, needing effective treatment. They are our future and we are failing them. I will never give up, I will never stop advocating and fighting for my kid. Never. But not all kids have a mom like me. This is more than a family issue, it’s a community issue. We have to do better for our kids, for our future. Write your senators, speak out to your community members, your pastors, church members, family, and friends. We need to rally around our kids. Mental health is a huge issue in our society and it has a stigma that needs to be broken and people that need support and love and dignity.
Help me be the change Judah and kids like him need. Let’s be a village for these kids. Judah is not a diagnosis or a label or a code for insurance billing. He is a 12-year-old boy who loves jokes and legos and Pokémon and can tell you every detail of all 500 of his cards. He’s my baby and he’s worth it!
Thank you for reading our story, I hope it sheds light on this issue. Something has to change!
Chelsea Mersereau a wife and mother of three children living in the SE suburbs of Portland, Oregon. She is a fierce advocate for her kids as well as their local special needs and mental health communities. She loves to laugh with friends, go on adventures, write, read and bake and can often be found with a good book and a big mug of chai tea. She sometimes blogs (when she remembers to) and has an Instagram of the same name. Find her words here.
Thank you for your courageous story. And for fighting the good fight everyday!