During college in the 80’s, my friends and I drank beer and sang along with The Clash. Today those same lyrics hold a much more personal meaning for my 24-year-old son Michael.
Should I stay or should I go?
They echo a dilemma.
My son wants to be independent like other young adults. But with a severe mental health condition, that may never happen. Meanwhile, he requires constant supervision – the boundaries of which further reduce his sense of control.
This indecision’s buggin’ me
If you don’t want me, set me free
Exactly who I’m supposed to be
Don’t you know which clothes even fit me?
When Michael was adopted at age four, I did a lot of assuming. After all, he was now my son. I assumed we could overcome the worst of Fetal Alcohol Syndrome and early childhood trauma. I assumed we could address his underlying mood disorder. I assumed we could teach him the functional skills to be independent as an adult.
Of course, Michael progressed – just very slowly.
At a pace consistent with his challenges.
However, he became fixated on self-harm at the tender age of nine. From that day forward, he endured a dozen psychiatric hospitalizations, survived two residential treatment stays and took hoards of psychotropic medication.
One day it’s fine and next it’s black
So if you want me off your back
Well come on and let me know
Should I stay or should I go?
Nevertheless, I remained committed to keeping my son at home – where he actually made the most progress without any fear of abandonment. But the staff psychiatrist at a local hospital grew tired of seeing him on the in-patient unit several times each year, when either suicidal or homicidal. Without consulting me, that doctor advised permanently placing Michael outside my home and contacted Child Protective Services.
Re-enter the foster system at 16. Alone.
Age out at 18. Forgotten.
Become homeless like many adults with mental illness.
The doctor’s lack of empathy still haunts me, as if familial ties mean nothing. In writing Michael’s discharge summary, he went one step further. Since I refused to follow his recommendation, he wanted me charged with medical neglect.
If I say that you are mine, I’ll be here ’til the end of time.
We never returned to that hospital or saw that man again. Although exhausted most nights, I started fresh each day. I then gave Michael a clean slate and kept my expectations reasonable. Eventually my son responded after a new psychiatrist added lithium to his psychotropic cocktail. And for the first time in four years, his mood started to stabilize.
Michael could now stay on task for approximately 20 minutes at school. Most days he would take his meds without complaint and complete a few small chores. He found comfort in music, rather than kicking walls or attacking family members. Although still obsessed with cutting, he went six months without an incident.
Best of all, my son smiled more frequently than in the past.
Even with the improvements in his behavior, the days were long for everyone else in the home. A true test of patience and unconditional love.
We’d overcome FASD & early childhood trauma.
Thankfully, Michael received extensive community-based services for six years through a new innovative state program. Someone – besides me – was also watching over my son. When at risk for a third residential placement, my son received additional home-based services.
They gave him the stability to remain at home.
They gave me hope to see through the darkness.
But those services abruptly ended on his 21st birthday – while his disability did not. Ever since, accessing equivalent mental health care through Medicaid has been difficult. And today with the proposed “repeal and replace” of the Affordable Care Act/Obamacare, the proposed Medicaid Block Grants to individual states could make that process even harder – if not impossible.
When we do find decent providers through Medicaid, they sadly don’t last for long – due to relatively low pay. Currently, Michael’s on a long waiting list for a new trauma-focused therapist.
How’s that for continuity of care?
At the same time, the lithium that worked wonders for years began destroying his kidneys. The first replacement drug made him paranoid and aggressive. The second had little effect. Finally, a brand new drug did the trick – after waiting a long month for Medicaid to approve it.
As an additional safeguard, I became my son’s legal guardian. Otherwise, he could make poor health choices without my knowledge. Or stop care altogether. Yet I’ve been surprised on many fronts. Actually shocked!
Placing him in a group home or state institution is easier than obtaining the community-based services that he needs – and deserves – as a young adult.
If I go there will be trouble. An’ if I stay it will be double.
To keep Michael in my house – where he wants to be with his brothers, I started working from home. With the drastic cut in pay, we adjusted financially and learned to live simply. His small SSI check certainly helps financially each month.
To provide 24/7 supervision, his siblings assist without complaint.
To supply the attention he craves, they respond with compassion.
Focusing on the positives maintains our perspective. Ignoring the negatives keeps us sane, not bitter.
The right choice for now is obvious.
He will stay – not go! DCP
Craig Peterson publishes EACH Child every Tuesday. To subscribe, open this link and “Like” the page. EACH Child is Special: Working Smarter Not Harder to Raise Every ONE
To learn more about Adopting Faith: A Father’s Unconditional Love, Craig’s soon-to-published memoir about raising six children with special needs, click here: Adopting Faith: A Father’s Unconditional Love
To follow my son Andrew’s inspiring story, “Like” his special Facebook page Andrew Peterson Goes for the Gold