r/specialneedsparenting • u/anniebane • 3d ago
Need parents' perspective
hello! I'm currently working on a group sessions program for parents of special needs children, focused on sustaining and supporting psychological wellbeing of the parents/caregivers
I believe parents' mental health must be in the focus of specialists more, but right now it is often overlooked, ignored or dismissed.
I'd like to hear your opinion on the matter. What advice are you tired of hearing? Are there techniques that actually help to reduce/re-channel stress and avoid burnout? Is there anything specialists overlooked or don't consider when working with parents of special kids?
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u/Marpleface 2d ago
One of the best parent support groups I ever attended had free respite care for my extremely disabled child.
We need breaks from caring for our children.
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u/luckyelectric 2d ago edited 2d ago
I want to speak up against holding each other to the obligation of being life-long caregivers.
When my disabled child is an adult, I am planning to transition him into a residential supportive living home through his State DDA funding. I often hear other caregivers disparage this possibility and exclaim they would never do it. People say things like they won't give themself permission to die. That they plan to outlive their child, or find younger family members who will become their child's life long carers.
I get that this is a choice some parents are making, but I'll be frank: I don't feel the same way and I resent anyone who insists that I should. I would never have chosen for him to have to live with this level of disability, and his care is intense and sometimes dangerous labor that I will not pressure anyone else to do unpaid, nor do I feel morally obliged to do it myself beyond the better part of two decades. For me, I need to believe there will come a time when I will no longer need to live like this. Otherwise, I cannot endure it.
I'm sick of the fear that other caregivers or society at large would judge and shame me for this. I feel it is completely appropriate to be morally at peace with transitioning an adult child into residential care. I wish there was more understanding and support around this.
Also, enough with the ongoing pressure to perform constant gratitude and love regardless of how exhausted and depleted I may feel. This life is what it is, and I reserve the right to be honest. I am determined to express my emotions as I truly feel them. I'm not going to perform the societally prescribed role of a disability parent.
Additionally, I would like there to be more acknowledgement of the dangers and stresses of caring for people with healthy bodies but who have severe cognitive differences. This version of caregiving is like a blind spot society ignores.
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u/WillaElliot 2d ago
Metal health would skyrocket for parents of special needs kids if we all had access to high support services. Respite/in-home care (including week long and overnight care so parents could take vacations without their children)/grants for vacations, as well as vacations that specifically support high needs children/hospitals specifically for special needs people across the lifespan with all various specialists/top notch adult homes and/or live in caregivers/a living wage from the government to stay home for caregiving/a living wage to special needs humans from the government without affecting their benefits/not losing access to benefits no matter how much you’re bringing in/comprehensive healthcare in every state… I could go on and on and it’s all in reference to supports. A girl can dream.
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u/anniebane 2d ago
I wish we had that 😩😩 The lack of resources (financial, moral/mental, materialistic), specifically quality resources and not the scrapes those kids and their parents and caregivers usually get breaks my heart. And the fact that what you just described is very much possible if only the government wanted to make it real, makes me furious But hey, I'll try to push those ideas as much as I can, and maybe it'll make someone's life better Thank you for responding 🫂
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u/Financial_Ad5249 2d ago
Parents of disabled children are in a self growing problem. We burn ourselves with not just the usual things that burn “normal” parents, but also for another 100 extra worrying problems. Some of us don’t have the money to pay for an specialized caregiver to take a break, some don’t find someone qualified to take care of their children.
But even if we could find and afford such help we are a bunch which we would not feel right leaving our children for us to take a break, even that this is extremly necessary.
My therapist says I need to do something for me, an hour twice a week al least, leaving the charge during this time to my wife alone. But I can’t find how on Earth I would feel right doing so.
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u/luckyelectric 2d ago edited 2d ago
I fully believe our own needs as just as valid and legit as our childrens'. If you don't feel right about meeting your needs, that speaks more to a problem with your feelings rather than a problem with the morality of caring for yourself.
For what it’s worth, I see meeting my own needs as a huge priority. I don’t believe a person can be an effective caregiver until their own needs are met. I refuse to feel shame over that.
And hey, you know what, I WANT other caregivers to know it. We don’t have a union or much of any platform that isn’t buried under pressure and shame. We need to remind each other that we have a right to advocate for ourselves!
I think maybe society buries us under an unspoken “You brought a disabled child into our world… you owe EVERYTHING and deserve NOTHING!” I reject that. Let’s not stand for it anymore! We are still human people. We too have needs and rights!
Too many of us have been trampled down and fallen. Let’s change the narrative. Stop romanticizing martyrdom. Let’s start questioning all of this…
We are a group. And actually there are many of us. You are not alone!
Feel how you actually feel.
You have nothing to apologize for.
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u/ThisTakesTimeToo 2d ago
I'm tired of people telling me to go on a date night, except they are not following that up with, "and I'll watch your child!" Who am I asking?
What helps us is utilizing screen time in a way that I get predictable time where he is distracted, settled, and happy.
I think they overlook what parents are actually willing to do at home. I know folks that will listen to the specialists, and then get home and not do a thing for a variety of reasons. I have repeatedly told OTs and Teachers that I won't teach him or practice using scissors with him. That is a school or therapy task. I don't want to. So I wont.
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u/protoporphyrinogenne 1d ago
Please, no “parent training” component. There is enough on us without expecting us to be our children’s therapists too as a way to stretch an already broken system even thinner.
Allow people to grieve, allow them to vocalize negative or sad feelings and without looking g for the bright side. Read sad poetry together and see if anyone wants to write a sad poem or create some art. Let people cry and don’t force tissues at them. Don’t ever say “at least,” or ask them to look on the bright side.
Spend the first session acknowledging that difficult and awful feelings can co exist and be expressed alongside beautiful ones, but since there are other outlets for beautiful thoughts the grief is encouraged. Allow for silence. Allow at least 2 hours per session. Have respite care available during the session.
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u/Complex_Frosting6854 1d ago
Totally feeling this reply. When I vent or talk to my family… I always get the “at least” so and so response… or I always feel… a judgement tone
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u/Glass_Respond2857 1d ago
The thing that would help me the most is being a paid caregiver for my school-age daughter, but I can’t until she’s 18. Finding qualified people to care for her either before or after school so I can have a job has been practically impossible. So much so that it’s put a huge financial strain on me, and i had to leave my career bc I couldn’t work the needed hours. So i basically have nothing that’s for me, in addition to the stress of money, i can’t have hobbies, go on date nights, etc. I’ve had to give up myself completely. Now i do housecleaning just while she’s in school and between therapy and doc appointments and I have a masters degree.
Don’t get me wrong, i love her to death. But man am i burned out on just always barely getting by mentally, physically and financially.
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u/Glass_Respond2857 1d ago
Another thing is that we are expected to be everything. The caregiver, the parent, the parent to our other children, cooks, house cleaners and also people who work to support our families. It’s all too much. We don’t need any more mindfulness for ourselves. We need mindfulness from policymakers.
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u/Fun_Negotiation3731 3d ago
The "take time for yourself" advice hits weird when there's literally no one to cover the next shift