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A Parent’s Perspective – Elizabeth Loan

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Years ago I worked for a school who only served kids with moderate to severe disabilities, primarily Autism. Part of our training was a series of lectures from other health professionals, support service agencies and other assorted individuals who worked in the field. One of the trainings was titled, “A Parent’s Perspective.” It consisted of one brave, war weary mother explaining in great detail how she (any most of the other parents in our school) managed their daily lives.  Her lecture was by far my favorite. As trained professionals we cared for the children, but at the end of the day we got to go home. When the student reached the age of 21, they left…forever. Every year we got a three month break. 100% respite from the screaming, biting, clogged toilets and day glow orange Cheetos covered fingers.

But the parents? They were on call for life.

Fast forward a decade. Add a son who has Aspergers, severe OCD, GAD (generalized anxiety disorder) and a psychotic disorder that no one is labeling schizophrenia yet.  Key word: yet. Ask almost any parent of a child with schizophrenia for the litany of diagnosis they’ve been through and they are sure to list off the usual suspects…psychosis NOS (beginner diagnosis. Scary, but easier to swallow than the ones that follow), bipolar disorder (current reigning champion), schizoaffective disorder (I can’t believe this one hasn’t been slapped on the table yet) before settling on the Big, Bad Wolf known as schizophrenia.

So here I sit, on the other side of the table sharing my perspective. The question is, what can I possibly share in this short essay that hasn’t already been said? Believe me, I have plenty to say. I’m quite verbose. Get me going and I could fill enough pages to rival, “War and Peace.” Today I will stick with three simple topics. Read on.

  1. Stigma is bad. I can’t believe we are still fighting this battle, but we are. Stigma, in every form, still presides over every aspect of mental illness, jobs, housing, treatment—you name it, stigma is there ruining it all. In spite of all the research and campaigns like “Bring Change 2 Mind” and “Rethink Mental Illness” we are still a nation that labels and fears people with brain disorders. It’s archaic and quite frankly disgusting. Our pattern to date is to ignore the needs of the individual and lay blame on the loved ones of the person who is ill. So, if you are the guy/gal who still believes mental illness is a side effect of bad parenting—LISTEN UP! It’s time to come out of your smug cocoon of inaccurate fallacies and transform into a decent human. If you haven’t had someone near and dear to you suffer from this tragic disease, please, trust me when I tell you this…YOU WILL. Someday, someone you love and care about will take a direct hit, or will watch someone they love and care about take a direct hit. When this tragedy strikes you will feel awful because for the first time, you will know beyond a shadow of a doubt that this is an illness, not unlike cancer. It does not discriminate. There aren’t any economic barriers. It is a beast that takes no prisoners. When this dark day dawns you will regret all your bogus assumptions and callous remarks, but you will never be able to take them back. Do yourself and your loved ones a karmic favor, don’t wait for that day. Educate yourself. Now.
  2. Parents of atypical/MI kids have a bond that is stronger than super glue. We love all of our friends, but we are selective about what we share with parents who have never had to sit through an IEP meeting or think about things like “transitional planning” and setting up a special needs trust. It’s not personal. We celebrate your child’s successes right alongside you. And we know (at least we hope) you celebrate our children’s milestones with us, but we are acutely aware that talking about Johnny’s trip into the attic on Tuesday afternoon to seek out the robot spiders planted by the FBI that landed him back in the psych hospital isn’t exactly dinner conversation. It scares the hell out of you. Even worse, we know you think we are blind to the fact that paranoia, or anger, or crippling depression are serious issues that MUST BE HANDLED NOW. We get it. Truly we do. But these types of crazy (it’s okay to use that term here, no?) events are woven into the fabric of our lives in and around the usual softball games and barbeques and we need to share with someone who gets it. While you’re worried about your kid making honor roll, getting asked to prom and post high school plans, we are worried about side effects of medications, relapses, and hospital bills. It’s not a competition. But if it were, we’d win the Oscar for most original screenplay, hands down.
  3. We need help. Families who have been struck by mental illness need help. We are not weak. We are not lazy. We are not milking the system (it’s broken by the way—not much milk to be had these days) and we cannot understand why so many people don’t get this. Think about this: my adult son receives social security disability. Top dollar? $735.00. That’s it. That small sum is meant to cover housing, medicine, food, doctor visits and dental care. Every hour he works reduces his benefits. I don’t know about you, but where we live there isn’t a cardboard box that can be rented for less than a grand, and that doesn’t include utilities. If we want him to receive any supported housing benefits we have to boot him off our insurance and put him on public aid. This means subpar care, no access to brand name prescription drugs, good hospitals, and good doctors. All in all it’s a pretty grim picture. We are lucky. My husband and I both have good jobs. If my son needed a higher level of care we could in theory pay for it until we die, and our estate plan includes a special needs trust (if you have a disabled child/adult in your life and you aren’t sure what this is, go see an attorney, stat!) but so many folks do not have those options. Many are single parents who can barely keep food on the table, let alone save money, take a vacation or even use the bathroom in peace. Next time you pull out your soapbox and get ready to grandstand about social service programs and the lazy SOB’s who want to take away your hard earned tax dollars remember this: there will always be bastards who abuse the system. It is an unfortunate fact of life. Lawyers, politicians, police officers, doctors, teachers…you can find bad apples in everywhere. On the whole, people who need social service programs are good folks, just trying to make ends meet day by day. Don’t believe me? Go back and re-read point 1.

 

Elizabeth is a mother of four boys, none of them particularly typical, all of them incredibly amazing. She works for a small 501c3 nonprofit agency that provides comprehensive vision care and rehabilitation to people with permanent vision loss. She credits her humor to the love and support of her amazing husband who married into the insanity of a ready-made family without reserve. She is an advocate for all people with disabilities, but her hands on experience is with autism spectrum disorders and severe mental illness.  I’m honored to call her my friend.

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