This post has a very special purpose. It focuses solely on the challenges of being special needs parent. As special needs parents, we all know that the challenges are well worth it and there are many positive as well but the goal here is to help the rest of the world better understand what we go through as parents.
One of the toughest parts of being a special needs parent is trying to get others to understand even a small percentage of what daily life is like for families with special needs children.
It doesn’t matter if it’s Autism, Downs Syndrome, ADHD, SPD or anything else. As a parent, your life is impacted in ways most can’t even begin to understand.
There’s no such thing as a level playing field when it comes to special needs families.
The world is largely unforgiving and doesn’t care how on some days, it’s literally just a struggle to survive. No one cares that you haven’t slept in days or that your child requires you 24/7/365.
There’s no holiday‘s or breaks. In fact, in many cases, the special needs parent will be doing this until the day they die. They will also spend everyday of their lives worrying about the day they will no longer be on this Earth to care for their child with special needs.
Everything that comes easy to most is a constant struggle for families with special needs children.
It sometimes takes an hour just to get shoes and socks on my youngest and I’ve given up on requiring him to wear clothes while he’s home.
I have to prepare three different meals for each meal of the day because each one of my kids have sensory issues that make it exceptionally challenging to feed them. They of course, don’t share the same challenges and food proclivities, so I have to treat each individually. The kicker is that I will often have to remake what I made because something was wrong with it.
My special needs kids are now grown but I haven’t forgotten the challenges. We have a couple who are friends who’s 9 year old son brings those memories glaringly back to life when we get together. Screaming out cuss words. Running around inappropriately touching someone repeatedly, crawling under the table at the restaurant. My kids are both ADHD. My oldest is also bipolar, mildly retarded and developmentally delayed. Both are pretty normally functional. Both lived their childhoods as is driven by a never ending motor. My oldest wasn’t so much hyper as he was impulsive. VERY impulsive. Once he became a teen there was no holding him down. He would sneak off. He’d be gone all day, and then later, all night, and I would spend hours searching for him. If I grounded him he would just sneak out the window. He was shoplifting all over the place. Sweets mostly. And when he started smoking would steal butts out of gas station ashtrays. No matter of trying to tell him how sick he could get would make him stop. He was,. and still is, pretty well spoken. You could talk to him and think he is normal. When the two were kids I got the normal dirty looks and nasty comments about how “I should make them behave in public”. They bounced off of each other. My son was also a fire bug. He’d been through the Children’s Hospital fire program to no avail. He one time set the curtains on fire in his bedroom, the bed on fire at his grandmother’s house and when he was 17 he took to pouring gas in the driveway and lighting it on fire. I begged for help. I begged for him to be put into the group home program. No help anywhere. Then in 2005, two weeks before Christmas, while I was in my room and my daughter was sleep at the end of my bed, he ran in and started yelling. He had set something on fire in his room. He had tried to put it out but couldn’t. His room was a nightmare on any given day. After taking the the two of them outside I threw two five gallon buckets of water on it, to no avail. He had succeeded in completely destroying his room, part of the back roof and the wall leading to the kitchen. The whole main floor of our house was smoke damaged and everything…everything was just BLACK. We lost pretty much everything. Thank God for insurance. He spent a year in prison. No one knows the struggles unless they’ve been there. It’s easy to judge that mom in line at the grocery store. We’ve all seen the one (or been the one) with the whining kid who lays down on the floor and screams or just can’t stand there and be still. It’s easy to judge. The truth is you have NO IDEA what is going on behind that behavior. Special needs kids can’t (and should NEVER) be hit into submission. You don’t know unless you’ve been there. My kids are both grown now and have matured. My son is almost 26 and still very impulsive. He will probably never be able to live on his own but he has settled down a lot. My daughter’s disability was always mild. She is still struggling to deal with it.
Wow…. Thanks for sharing your amazing insight. Nothing but respect for you here.. ☺
I think the biggest thing for me isn’t ONLY doing things that scare him it’s having to do them again and again. Things he hasn’t done in a month and scared him will scare him again. When he’s scared he’s mean. So he attacks people and the things that scare him are not always what you would expect… actually most of the time it’s things you wouldn’t expect so people outside our family feel we are babying him because and we need to ignore it. They also think we should punish him for his response but they don’t realize it doesn’t get better from punishment it makes it worse. If I do it WHILE he’s acting up he gets angrier and harder to handle and if I do it later he remembers the next time he gets scarred and is worse because he knows he could be punished.
Rachel, I can totally relate… Hang tough. You aren’t alone.. 🙂
My special needs kids are now grown but I haven’t forgotten the challenges. We have a couple who are friends who’s 9 year old son brings those memories glaringly back to life when we get together. Screaming out cuss words. Running around inappropriately touching someone repeatedly, crawling under the table at the restaurant. My kids are both ADHD. My oldest is also bipolar, mildly retarded and developmentally delayed. Both are pretty normally functional. Both lived their childhoods as is driven by a never ending motor. My oldest wasn’t so much hyper as he was impulsive. VERY impulsive. Once he became a teen there was no holding him down. He would sneak off. He’d be gone all day, and then later, all night, and I would spend hours searching for him. If I grounded him he would just sneak out the window. He was shoplifting all over the place. Sweets mostly. And when he started smoking would steal butts out of gas station ashtrays. No matter of trying to tell him how sick he could get would make him stop. He was,. and still is, pretty well spoken. You could talk to him and think he is normal. When the two were kids I got the normal dirty looks and nasty comments about how “I should make them behave in public”. They bounced off of each other. My son was also a fire bug. He’d been through the Children’s Hospital fire program to no avail. He one time set the curtains on fire in his bedroom, the bed on fire at his grandmother’s house and when he was 17 he took to pouring gas in the driveway and lighting it on fire. I begged for help. I begged for him to be put into the group home program. No help anywhere. Then in 2005, two weeks before Christmas, while I was in my room and my daughter was sleep at the end of my bed, he ran in and started yelling. He had set something on fire in his room. He had tried to put it out but couldn’t. His room was a nightmare on any given day. After taking the the two of them outside I threw two five gallon buckets of water on it, to no avail. He had succeeded in completely destroying his room, part of the back roof and the wall leading to the kitchen. The whole main floor of our house was smoke damaged and everything…everything was just BLACK. We lost pretty much everything. Thank God for insurance. He spent a year in prison. No one knows the struggles unless they’ve been there. It’s easy to judge that mom in line at the grocery store. We’ve all seen the one (or been the one) with the whining kid who lays down on the floor and screams or just can’t stand there and be still. It’s easy to judge. The truth is you have NO IDEA what is going on behind that behavior. Special needs kids can’t (and should NEVER) be hit into submission. You don’t know unless you’ve been there. My kids are both grown now and have matured. My son is almost 26 and still very impulsive. He will probably never be able to live on his own but he has settled down a lot. My daughter’s disability was always mild. She is still struggling to deal with it.
Wow…. Thanks for sharing your amazing insight. Nothing but respect for you here.. ☺
My special needs kids are now grown but I haven’t forgotten the challenges. We have a couple who are friends who’s 9 year old son brings those memories glaringly back to life when we get together. Screaming out cuss words. Running around inappropriately touching someone repeatedly, crawling under the table at the restaurant. My kids are both ADHD. My oldest is also bipolar, mildly retarded and developmentally delayed. Both are pretty normally functional. Both lived their childhoods as is driven by a never ending motor. My oldest wasn’t so much hyper as he was impulsive. VERY impulsive. Once he became a teen there was no holding him down. He would sneak off. He’d be gone all day, and then later, all night, and I would spend hours searching for him. If I grounded him he would just sneak out the window. He was shoplifting all over the place. Sweets mostly. And when he started smoking would steal butts out of gas station ashtrays. No matter of trying to tell him how sick he could get would make him stop. He was,. and still is, pretty well spoken. You could talk to him and think he is normal. When the two were kids I got the normal dirty looks and nasty comments about how “I should make them behave in public”. They bounced off of each other. My son was also a fire bug. He’d been through the Children’s Hospital fire program to no avail. He one time set the curtains on fire in his bedroom, the bed on fire at his grandmother’s house and when he was 17 he took to pouring gas in the driveway and lighting it on fire. I begged for help. I begged for him to be put into the group home program. No help anywhere. Then in 2005, two weeks before Christmas, while I was in my room and my daughter was sleep at the end of my bed, he ran in and started yelling. He had set something on fire in his room. He had tried to put it out but couldn’t. His room was a nightmare on any given day. After taking the the two of them outside I threw two five gallon buckets of water on it, to no avail. He had succeeded in completely destroying his room, part of the back roof and the wall leading to the kitchen. The whole main floor of our house was smoke damaged and everything…everything was just BLACK. We lost pretty much everything. Thank God for insurance. He spent a year in prison. No one knows the struggles unless they’ve been there. It’s easy to judge that mom in line at the grocery store. We’ve all seen the one (or been the one) with the whining kid who lays down on the floor and screams or just can’t stand there and be still. It’s easy to judge. The truth is you have NO IDEA what is going on behind that behavior. Special needs kids can’t (and should NEVER) be hit into submission. You don’t know unless you’ve been there. My kids are both grown now and have matured. My son is almost 26 and still very impulsive. He will probably never be able to live on his own but he has settled down a lot. My daughter’s disability was always mild. She is still struggling to deal with it.
Wow…. Thanks for sharing your amazing insight. Nothing but respect for you here.. ☺
But then again.. His little belly laugh is magical. So I’ll clean poo and make appointments .. And wait.. And question my own humanity for as long as it takes. And I’ll figure out how to make the rent somehow too. Might even bake some cupcakes.. Because, cupcakes.
When I see those stories on the news.. Another mom drove her kids off a bridge… I don’t get angry and rant like most commenters. I cry and think.. That poor woman.. How many times did she try to help her little boy before everything just became too damn much and breathing became impossible. I think all of ‘us’ have seen that edge. How many times have ‘we’ waited a month for a doctors appointment that did nothing but tell us to wait another month to see another doctor.. And time ticks by.. With no help.. And you’re late on the rent again.. And the resources just aren’t there. They’re just not. There’s a 6 month application process for this program.. And when you get there the slots have all filled up. I don’t even know if I’m a human anymore or just a poo-cleaning-appointment-making-waiting machine.
I just wish every person who wanted to be a parent had to live with & take care of a “special needs” or “disabled” child for a month – while working (if they could), than to everyone would understand, but it only takes a few extraordinary people & the rest would give up – almost like I would like to do. People just won’t understand until they walk even a few feet in our shoes.
Fair enough, lots of the time kids will age out of food avoidance. I know I did.
Compared to the other two he’s a breeze most of the time but compared to a typical child, it’s challenging
He’s gotten a lot better but it’s still a challenge
I thought you said Gavin eats pretty much anything.
My special needs kids are now grown but I haven’t forgotten the challenges. We have a couple who are friends who’s 9 year old son brings those memories glaringly back to life when we get together. Screaming out cuss words. Running around inappropriately touching someone repeatedly, crawling under the table at the restaurant. My kids are both ADHD. My oldest is also bipolar, mildly retarded and developmentally delayed. Both are pretty normally functional. Both lived their childhoods as is driven by a never ending motor. My oldest wasn’t so much hyper as he was impulsive. VERY impulsive. Once he became a teen there was no holding him down. He would sneak off. He’d be gone all day, and then later, all night, and I would spend hours searching for him. If I grounded him he would just sneak out the window. He was shoplifting all over the place. Sweets mostly. And when he started smoking would steal butts out of gas station ashtrays. No matter of trying to tell him how sick he could get would make him stop. He was,. and still is, pretty well spoken. You could talk to him and think he is normal. When the two were kids I got the normal dirty looks and nasty comments about how “I should make them behave in public”. They bounced off of each other. My son was also a fire bug. He’d been through the Children’s Hospital fire program to no avail. He one time set the curtains on fire in his bedroom, the bed on fire at his grandmother’s house and when he was 17 he took to pouring gas in the driveway and lighting it on fire. I begged for help. I begged for him to be put into the group home program. No help anywhere. Then in 2005, two weeks before Christmas, while I was in my room and my daughter was sleep at the end of my bed, he ran in and started yelling. He had set something on fire in his room. He had tried to put it out but couldn’t. His room was a nightmare on any given day. After taking the the two of them outside I threw two five gallon buckets of water on it, to no avail. He had succeeded in completely destroying his room, part of the back roof and the wall leading to the kitchen. The whole main floor of our house was smoke damaged and everything…everything was just BLACK. We lost pretty much everything. Thank God for insurance. He spent a year in prison. No one knows the struggles unless they’ve been there. It’s easy to judge that mom in line at the grocery store. We’ve all seen the one (or been the one) with the whining kid who lays down on the floor and screams or just can’t stand there and be still. It’s easy to judge. The truth is you have NO IDEA what is going on behind that behavior. Special needs kids can’t (and should NEVER) be hit into submission. You don’t know unless you’ve been there. My kids are both grown now and have matured. My son is almost 26 and still very impulsive. He will probably never be able to live on his own but he has settled down a lot. My daughter’s disability was always mild. She is still struggling to deal with it.
Wow…. Thanks for sharing your amazing insight. Nothing but respect for you here.. ☺