I recently took part in an online survey for parents of children with mental illness. The survey was looking at the types of supports (personal, professional and community) that are typically available to parents of children with what they categorize as severe and persistent mental illness.
One of the questions really got me thinking...
They asked,
"Please describe ways that your family members, friends, doctors, people you work with, and/or members of religious organizations could be more helpful and supportive of you as a parent of a child with a severe and persistent mental illness.".
I only had to think for the briefest moment before starting to type... In all the years of M's schizophrenia (9 years now!) it's the first time I've ever been asked that type of question, and once I got started answering it, it was hard to stop.
What I ended up with is a list of 20 ways to be supportive of parents of children with mental illness...
Here they are... (in absolutely random order)
1) Please stop wearing t shirts that make fun of mental illness or hallucinations, and
think about the language you use... using "psycho" or "schiz" casually, or as even a light-hearted insult, is hurtful to me, and disrespectful of my son's struggle with the devastation of schizophrenia.
2) Call just to say hello sometimes. No, it may not be the best time for a phone call on my end, but I'll let you know if I can't talk (or I'll let the machine take a message for me). Calling at a bad time is better than not calling at all.
3) When you call, don't be afraid to ask how things are going. And if you do ask, please take the time to listen to my answer.
4) If you are able, visit us sometimes... even just short drop in visits are so nice, they can brighten our whole day. It's virtually impossible to take an actively psychotic young person out to visit in other people's homes... so it can be easy to feel isolated.
5) But if you visit, know that as much as we love to see you, shorter visits are usually better than longer ones. People with sz tend to fatigue easily, and can be hypersensitive to noise, stimulation, and breaks in routine. Unfortunately, it often doesn't take long for them to overload... which leads to greater instability and can sometimes even trigger psychotic episodes... so short visits are probably best.
6) Please be accepting and patient with my child, even when he says or does something inappropriate, irritating, or strange... or when he looks unkempt and disheveled... understand it can be part of his illness and we are doing the best we can.
7) When I tell you about difficult symptoms or behaviors we're dealing with, please don't tell me about the time your child did almost the same thing. Your typical child doing something similar, once, isn't the same as living year after year, 24/7, with extreme behaviors. I appreciate you trying to relate, really I do... but it's just not the same thing.
8) Be brave and ask how my child is doing, even if you're afraid to hear the answer (see #3b)... but don't take it personally if it's difficult for me to talk about the worst times until after they've passed and we've made it out on the other side.
9) Tell me you are there for us, but only if you can match those words with actions.
10) Please don't talk about my child's illness or symptoms to your friends, co-workers, neighbors, children, extended family, mailman, or anyone else, without asking my permission. I need to trust you to respect my child's confidentiality if I'm going to be able to confide in you.
11) Don't feel sorry for me...
ever. I love my child and think he's awesome. His illness may have taken (
stolen) many things from him, but it has also allowed me to clearly see the strength and gentleness of his spirit. He is a gift, and I don't want or need your pity.
12) Please don't be pushy about diets, supplements, or other therapies that you've heard will "cure" my child's mental illness. Understand and respect that we've tried everything we thought would have even the slightest chance of helping him... your pushiness brings misplaced guilt and that's not something I need or have time for.
13) Likewise, don't tell me he just needs a different parenting strategy, or more attention (or less attention). He has a biologically based mental illness... my parenting didn't cause it, and can't cure it (see 12b).
14) Please don't judge the different way I must parent my child with mental illness. By necessity, I've had to learn to parent my son differently than I parented my typical children, and differently than most people parent. Trust that there are reasons for what I do, reasons that are probably not apparent to those outside our family... but are valid nonetheless.
15) Be patient with us when we seem undependable. My son can go from calm to out of control very quickly, and (trust me on this...) you
don't want us around when he's out of control. I can't keep appointments when he's unpredictable, it's too big a risk. So when I make plans with you, know that I'll do my best to keep them... but sometimes it's just not possible.
16) Understand that hearing about your typical child's successes (or complaints about your typical child's minor misbehaviors) can be hard for me, especially when my child is unstable and seems to be hanging on by a thread. Know that I'm happy for you and your child, and truly appreciate (probably even more than most people) the miracle of a typical child's accomplishments... but know also that those kinds of conversations can be hard and trigger grief.
17) But at the same time, please don't be afraid to talk to me like a "regular" person... Having normal conversations, about normal things, helps me to feel normal even when things around me are anything
but... and they help me feel connected to the rest of the world.
18) Don't hesitate to share your struggles with me or lean on me for support because you feel like the struggles you are facing aren't as "big" as mine. I know of no rating system for life's challenges... You're part of my support system, please let me be part of yours.
19) Hugs are good.
20) And prayers are always appreciated.
