No One Brings a Casserole

Screen Shot 2013-09-07 at 4.47.12 PMOnce again, I am attempting to sleep in a chair in an emergency room. It’s been three days since the kid was discharged from a three-month placement. He started in a CBAT (useless). From there, where he received no care, he was moved to a psychiatric unit where meds were finally changed. Final stop was a developmental disabilities unit for behavioral therapy and then home. Things were a little shaky and we thought it was just part of transitioning home. We have a wonderful behavior therapist that helped us navigate through some rough times. The hope was once he was back into his day treatment school and into his routine, he could settle. Unfortunately, that was not the case. This year has been exhausting.

And the hardest thing about all this madness is, as a friend of mine often says, no one bring a casserole.

These past three months were the second placement this year. He has been placed more than he has been home. It has been a physically and emotionally draining experience. It has stressed our finances. Free time is spent traveling to facilities for visits, attending meetings, making phone calls and doing research on offered treatment options. There were days the entire family would make the two-hour drive for a visit only to be turned away because he was unsafe. Resentment began to build. Family members felt robbed of weekends. Some of the things we were all feeling sound incredibly terrible and selfish – even in my own head. And the hardest thing about all this madness is, as a friend of mine often says, no one bring a casserole.

Screen Shot 2013-09-07 at 4.48.31 PMI know, that sounds a tad silly – but it’s true. Despite all the ribbons on cars and autism awareness, the reality is – no one wants to talk about it and the certainly do not want to DEAL with it. Even worse is the mental illness piece. Even I, as a parent, feel more comfortable telling someone the kid is on the spectrum – and skipping over all the other letters than fall under the growing list of diagnoses. There are family and friends who know – but it is difficult to understand how someone so young can be so sick. I have learned not to mention the medications any of my children take. There is such a stigma attached to giving a child medication and a segment of society who think we are simply ‘lazy’ parents – that proper parenting and charts could solve the problems we face day to day. photo-8We have schedules, visual aids, charts, sensory breaks, in home behavioral therapy, day treatment schooling and guess what? He STILL needs medication. And sometimes, even all that isn’t enough. The thing about having a mentally ill child is that treatment is trial and error. Some medications do not work. Some make things WORSE (file that under awesome). Some work for a time, and then stop. It’s on ongoing battle to find a level of stability so that all the other pieces will work.

If simply being a ‘better parent’ would solve our issues, why would anyone think we would chose this path?

If simply being a ‘better parent’ would solve our issues, why would anyone think we would chose this path?

First, it is difficult to get anyone to diagnose a young child. Even with observations, documentation and years of care under a therapist, finding treatment was nearly impossible. And still is. Once you find someone who will treat them, there are multiple appointments, mood tracking and the ever-popular regular blood work that has to be done. If we could fix this with a sticker chart and better parenting, we would.

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The second worse thing about having a child with mental illness (the first being that your baby is suffering) is the alienation. Run into someone in the store during a time of crisis and they cannot get away fast enough. Neighbors see the kid leaving yet again in an ambulance and they desperately avoid eye contact and conversation. When little ‘Mary’ is sick – there will be no bake sale. People will not be sporting the ‘find a cure for x’ bracelets. The financial burden for some families is brutal. We are lucky that our kid kept his insurance after the adoption. I cannot imagine what the out-of-pocket costs would be if he had our insurance – not just the three-month stay, but also the regular therapies needed. One of the hardest things about this placement was having the other children on summer break. Trying toget in visits (some of which they were not permitted to attend), attend meetings and still provide some semblance of normalcy for the other kids. I am physically and emotionally exhausted.

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Most days I feel like we are barely treading water. My husband is wonderful – but he also has to hold down a job outside the home while all this madness is going on. It is times like this that I wish I lived someplace where they know it does indeed ‘take a village’ – and someone would bring a casserole.

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10 thoughts on “No One Brings a Casserole

  1. It really depends — my family has a long history of severe mental illness and folks have always been incredibly, amazingly, wonderfully supportive. My baby sister K developed anorexia, OCD and pretty horrific panic attacks starting in elementary school and was hospitalized six or seven times (longest was 8 weeks; average probably closer to 4 weeks) by the time she graduated high school. All the rooms on the adolescent psych unit have a second bed, so my parents often stayed over at the hospital with K. Her teachers happily sent homework packages, as well as visiting teacher to help ensure K didn’t fall too much behind in school.

    Everybody stepped up to help my family — casseroles galore, a steady stream of visitors for K at Sick Kids (to ensure she always had a visitor during visiting hours), all sorts of help for my parents, family friends plus the parents of my friends happy to carpool me (before I got my license at 16) without expecting my parents to take their turn in the carpool. K’s friends were equally awesome. The support our family received was pretty much what I’d imagine a family with a kid with cancer, or epilepsy or in need of a heart transplant would have received.

  2. Wow…just wow…so succinctly put, and so palpable the pain. Wish every teacher and school administrator and neighbor and person around every family that faces these challenges every single day would read this. I am forwarding this to my child’s school and re-posting to Facebook, not because my family faces issues anywhere near this level, but to help in any way to create more awareness and understanding. From the bottom of my mothering heart I thank you for writing this.

    • Thank you for READING this – and sharing. I hope people will gain an understand things from the family perspective.

  3. Girl, I would bring you that casserole! Hang in there. Thank you for the perspective and reality check. I have some friends who could use a casserole. I’m on it. If they think its weird, I don’t have to do it again. Much love to you! Way to be an amazing mom.

  4. Oh Amy! Where do you live? I will bring a casserole–and a huge hug! You are SO, so right! I was totally exhausted for YEARS after our son, Ben was adopted. NOBODY “got it.” He had several special needs not disclosed prior to adoption. We went through emergency surgeries and medications, special diets and treatment plans! We battled state funding cuts for special needs services, nearly went bankrupt and lost job opportunities because there were not enough hours in a day to respond to employers and doctors and insurance companies. For YEARS every medical claim was routinely denied and I spent hours/days on the phone getting doctors, nurses and insurance case managers to rewrite and resubmit billing. I became an expert in insurance law and medical coding. One Urology specialist told me with a great degree of awe that I knew more about pediatric urology than most of his residents! I can’t tell you how many nights I slept a couple of hours at a time in our van in the children’s hospital parking garage. I cringed when I had to beg friends to babysit my other kids. I knew I was skating on the edge of the limits of friendship. I couldn’t find anyone who would take on the job of babysitting the special needs child as a job. I had planned to go back to work full time a few months after adoption. Without childcare, it couldn’t happen! My youngest child basically grew up in hospital waiting rooms while her older brother was getting one treatment or therapy or another–sometimes three doctors a day, never fewer than three a week: urology, visual impairment, behavioral therapy, speech therapy, occupational therapy, physical therapy, inpatient neurological assessment, inpatient surgeries and outpatient surgeries emergency interventions, nutritional services, EEGs and MRIs, barium ennema and endless vials of blood from a kid who was so traumatized it took a dozen adults to hold him down to get one draw. We lived with charts and picture vocabularies, sign language classes (for me!), adaptive equipment and computer language learning aids. The worst was the swirl of years of not knowing what was going on. One expert claimed one diagnosis and another assigned something different until we had an alphabet soup of probable explanations. Nobody knew why, but our kid was clearly “not right.” And nobody; not family or friends or church “got it.” And you’re right, I’d come home after six days of living in the hospital to find the house destroyed from daddy and babysitter chaos, dishes stacked in the sink, two needy kids wanting mommy time and the sick one needing intravenous medicine every two hours– and no casserole ready to pop in the oven–indeed, no groceries to make the casserole. I think other people can rise to a crisis; a single episode. They can’t understand an ongoing lifestyle of crisis which is the reality of life with a special needs kid. And here’s another thing nobody else gets: When “normal” kids turn 18 they leave home and go to college or out to jobs. By 25 most are fully “launched” and on their own. With the length of the waiting lists for group home openings in our state, our son will likely live with us until we die –or turn 90, whichever comes first. I’m tired, girl. Forget the casserole! I’m bringin’ Margaritas!

    • Margaritas some days are a better idea!! We always joke – PTW – pass the wine….lol

  5. VERY Well said. Wish you guys were closer. Brad would bring a casserole and I would bring the wine!! Love you all.

  6. This brought back my own memories of a three year battle with a mysteriously ill teenage daughter ten years ago. We endured monthly hospitalizations, a myriad of inconclusive and downright useless tests and treatments, seeing specialists who had no idea how to treat my daughter and the loss of countless school days for her and work days for me. I ended up getting offered severance to leave my job but somehow my daughter made it through High School even with the multitude of hospital stays and ER visits. I know for a fact that I skipped the teen age rebellion stage because we had grown to rely on each other through all of the forced closeness but I don’t think either of us will ever have any real faith in the medical community any longer.

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