Question for parents of disabled kids....

[ClaraOswald]

Do you ever feel like you're just living in a totally different world than those who don't have kids with disabilities?

My son is 11 years old. He's autistic. Minimally verbal. He's on an alternative curriculum at school. He is our only child. So this type of parenthood journey is the only one I know. I wouldn't change my son for anything. He's the absolute best kid and makes me so happy every single day.

But sometimes I just feel so out of place when I'm around 'typical' families. It always seems more glaringly obvious to me around the holidays. So I just start to feel a bit down about things. I typically don't stay down for long, thankfully. But it just sucks sometimes.

Anyone else out there feel this way? How do you cope with it?

 

[lanejudy]

I hear you. I feel like a live in a different world at times -- half in the "normal" world and half in "our" world. The holidays don't bother me as much as some other times (graduations, sports, recognitions, etc.). We still do the whole "Santa" Christmas thing because it's her happy time, though it has cut back over the years. But yeah, when I'm shopping in the toy department for my 20-yr-old next to the person buying a doll for a 2-yr-old, it hits me. But I wouldn't change her for all the world.

Please know you are not alone. It's a journey. Sometimes we need to help each other through it.

 

[ClaraOswald]

Thanks, that helps.

My son isn't able to participate in any typical sports but has done a special needs soccer program, which was good for him. But I see my friends post about all of their kids' activities and it is hard.

He's in his last year of elementary school and I just fear it will be even hard in middle/high school. I go up to the school parties and field days and field trips. And that's another time it really hits me because it's so obvious when he's around his classmates.

And then just little things....like on my cousin's Instagram today, she was putting out glass Christmas decorations and lighting a candle. I could never! (Well, I can light a candle as long as it's on the counter and I'm nearby.) And yet she has 3 kids until the age of 6.

I honestly think I need to just get off of Instagram and Facebook because seeing family pictures/videos is hard. And I'm just dreading getting together with my siblings and their kids in a couple weeks. My brother has 2 daughters around my son's age. They go to a small private school so have very little exposure to kids like mine. So I feel like they just don't "get" it at all. And neither do my brother and SIL.

 

[Disturbia]

Just keep in mind that all the pictures and things on social media are just snapshots in time. I don’t have instagram and created an Facebook account but never logged in. You can survive without them. Everyone had ups and downs and their own struggles that don’t get posted. We don’t know what’s going on behind closed doors. I was just reading an article on Sarah Ferguson and that the Queen said ‘Yourself is good enough.’

You don’t need to explain anything to anyone. If they don’t understand that’s their issue like the person giving our DD dirty looks when she accidentally bumped and I apologized for her. If they want to learn then they can ask. Otherwise you have enough on your plate. I’ve had other instances where people thought it was us not disciplining and even screaming at our child who continued to dance or rotate.

And airplanes are the worst (in the theatre I could lay our DD down sideways and hold her legs to keep her from kicking-a very painful Moana 2 viewing btw).

 

[barkley]

Do you ever feel like you're just living in a totally different world than those who don't have kids with disabilities?

My son is 11 years old. He's autistic. Minimally verbal. He's on an alternative curriculum at school. He is our only child. So this type of parenthood journey is the only one I know. I wouldn't change my son for anything. He's the absolute best kid and makes me so happy every single day.

But sometimes I just feel so out of place when I'm around 'typical' families. It always seems more glaringly obvious to me around the holidays. So I just start to feel a bit down about things. I typically don't stay down for long, thankfully. But it just sucks sometimes.

Anyone else out there feel this way? How do you cope with it?

I get it-my autistic son is 27. it's a different life, a different path. one of the best things we ever did was find a local therapy group that specialized in autism. our son went for several years once a week to a teen group session but the real value was in the parents meeting together during that time as a group as well. SO MANY shared experiences, absolutely identical-but we learned we were not alone in our feelings both good and bad, our frustrations, our fears. just having others to talk with who understand the 24/7-it's like we speak a shared language others can study but unless they live it will never truly master.

 

[ClaraOswald]

I've met some great moms through the local autism group activities, so I'm thankful for that. Though these days we mostly just chat via messenger since we're scattered about in various suburbs. It is nice having at least some people who understand.

 

[Grand Koalafornian]

Sorry to bump this thread. I don't have any kids myself, but I grew up with a little sister with moderate disabilities and severe medical problems and I felt like I was growing up in a different world from all the other kids, so I can relate on that level. I'm fundamentally a different person than I would have been if my sister had not had disabilities. Full disclosure, I am mildly autistic (not diagnosed until adulthood) and have some other minor disabilities, which might have contributed to that feeling.

It's interesting to me that you mention the holidays because I always related it to the song "What's This?" from The Nightmare Before Christmas. I felt like I was outside looking in at all the typical families. We were missing some of their happy things, and they couldn't imagine most of our scary things. My sister was the best person I ever met. I won't say I wouldn't change anything, because she experienced a lot of pain in her short life, and I would have given anything to change that. But I know that growing up with her made me who I am and I have no idea who I'd be without her, or if she'd been born healthy. I grew up in a different world from pretty much everyone else I know, even the other late diagnosed, mildly autistic adults.

As for social media - Facebook started when I was in high school. I quickly learned that I couldn't use it. I think the autism is a huge part of it. Seeing everyone else's highlight reel and comparing it to my "behind the scenes" - it exacerbated my depression pretty badly. I totally know the experience of "I'll never have that" or "we can't do that" from looking at social media. Open flames near my sister's oxygen tank? Nope!