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If you don’t have a special needs child or a child with a mental health condition, then you have not a clue what it’s like in our world. So don’t speak on something you haven’t no experience with. And don’t put us inside the general population of general parenting, yea there may be some commonalities but not all the way. We do what we gotta do to help ease our own daily challenges and frustrations and we don’t need you to advise us on what you think works. I don’t care even if you’ve accomplished a degree in child psychology because it still doesn’t and will not ever compare or measure up to the daily challenges that we live with, battle through, and sometimes pull our hair out about throughout the entire day and wake up to the next day and do it allover again. It’s really NOT as simple or as easy as we make it look. Behind closed doors alot of us parents, caregivers, have a lot to navigate through. So after your few minutes of assessing a situation, and your input is to just spank him/her or some other punishment that you think works effectively, well it doesn’t.
Some of us parents, have it harder than others, some of our children aren’t able to verbalize how their day was while in another person’s care, and they become just as frustrated about things as others would, only their unable to verbalize it to us, so we are left to figure it out based upon other behaviors. Some of us have children who can verbalize their day, and yet they have behavioral issues that are sometimes unexplainable and outbursts that occur for no apparent reason. Some of us have children that have destroyed our property because of their aggression and anger but we don’t talk about that. Some of us have children who appear “normal” by physical appearance but their bullied because of how they sound when they speak. Some of us have adult children who are still wearing diapers and aren’t toilet trained. Some of us want to do things just like any other average family, but it’s not possible due to other factors. Some of us can’t work because of the needs of our children, the multiple hospitalizations, ongoing procedures, medication management, feeding therapies, etc.
Some of us are at a point where we’re fed up with others saying insensitive statements. Some of us have chosen to become advocates for others. Some of us are tired of the jerks in this world, but who isn’t. Some of us just want to be able to have a full nights sleep without our kid getting up at 3am and rewinding their Barney tape. Some of us just want a day where we can breathe and have some quiet time. Some of us just want to the freedom to relax and not have to always feel rushed because we feel tense because we know our child is getting ready to have a public meltdown.
Most of us lack outside, trustworthy, adequate, appropriate supports. And therefore we don’t want to just put our child into the hands of just any caregiver. Some of us have to walk on eggshells. Some of us have to avoid triggers that set our kids off. Some of us are drained and worn down. However, we get through it, and we learn as we go. We make it look like it’s no big deal.
Another fact, most others don’t know, is this, many of us special needs families don’t have very many close friends, many of us are left without that village to help us raise our children. Few of us have extended family support and compassion. Many of us don’t get included or invited to your typical gatherings, so we stick to our own familiarity of “special needs events” so we don’t have to worry about being a “bother” to others, so we don’t have to deal with the stares, or hearing whispers and laughter at us and about us, not with us or together. Ask yourself this, how often do you see any special needs individual out in public on a day to day? Like when your at the mall, in the grocery store, or dining out at a restaurant? To be honest, unless our child is “higher functioning” than you don’t see any of us.
There are so many different terms and labels and categories that in my own opinion and it’s become white noise to myself. None bother me anymore. I’ve heard: “handicap, disabled, delayed, special needs, downs, autistic, non verbal, high functioning, low functioning, and they fall under the spectrum” and that’s just a few. In anycase, Our normal is “our normal”. Understand this, years before we even probably had a thought of bringing forth children, we didn’t forsee our future like this. I don’t think any parent has ever envisioned what it would be like to raise a family with a child that will require extensive round the clock supervision and care well beyond adolescence.
If we’re all unique, all different, not one of us the same, than who are you to say, our children don’t fit in.
I think if I’m honest most of us special needs parents had visions of having a child who would be considered the “typical” child who is self sufficient on an independent capacity and can work a full time job, play regular sports, and possibly move out and get married one day. Well the truth is, for some of us, our journey has taken us a different way, and that is no longer our vision. Because it’s truthfully unrealistic. All I’m trying to say here is this, don’t be so quick to put your mouth upon what “you’d do if that was your kid”. And I do know this, I’d like to believe that all of us parents, absolutely wouldn’t change a thing about our child now that they’re here and even with all the challenges.
We’re doing the very best we can to keep them educated, safe, loved, cared for, nurtured, disciplined, corrected, and encouraged, inspired and respected. So please the next time you’re out and you see a situation where you might normally be so quick to throw in your 2 cents, instead remember reading this. And if after all this, you have an attitude of “that’s their problem or I don’t care they still need to….” Or something to that affect, than your just a cold hearted individual who lacks compassion and most of all you lack trying to understand. All you see is what’s occuring in the moment.
Thanks for those who will respect what I have to say. And if your a negative Nancy, keep it to yourself and just know this, our truth is our truth, our journey is our journey, our normal is our normal, and our experience is what makes us experts in what we have lived to tell others who are just beginning their journey as a special needs parent and might be feeling confused and hopeless. There is hope in Jesus and there is support and advocacy out there.
I’m just one mom who speaks on behalf of some others. I’m just brave enough to write and share what some still may not have the courage or feel the need to say. I’m just a mom and this is just a small part of my journey with motherhood and parenting. Be blessed! -Erika
As a mom to my son, Erik. Down thru the years I have encountered some very nice people, but sadly I have also encountered some very nasty and ugly people. I have been asked by people of all ages from his peers to adults, “WHATS WRONG WITH HIM?” Mostly when he wasn’t talking yet and he was only able to make sounds and body movements for expressing excitement. Back then he used sign language mostly.
