There is a memory I have of playing with my daughter with Down syndrome at the park. She was around 21 months old, and she wasn’t walking yet. I held her hands so she could “walk.” I helped her climb on the play structures and carried her when necessary, often dashing to the end of a slide so I could catch her. Several other kids asked for help, their moms were sitting on the benches to the side, chatting together. It was a Mothers of Preschoolers (MOPS) play-date. Except all the moms were hanging out without me.
This was not the only time a play-date gathering ended up with me hanging out with the kids. I couldn’t sit down with the other moms because my child could not navigate a playground independently, or because my child could not be left unsupervised due to safety reasons.
What stands out to me most, is that in many of these gatherings — because I was present — nobody seemed to notice I was still spending time alone.
There was also a time when a group of moms were discussing the “frustrations” of their babies being early walkers, “My ten-month-old just started walking, it’s the worse! I was not ready for that, he’s getting into everything!” I had a five-year-old with cerebral palsy who did not walk independently. I did not mind the conversation as much as the implication that mobility was bothersome for the parent. I couldn’t relate.
Related: Isolation and Special Needs Parenting
Over time, as my two children with disabilities have become older, the isolation has continued to grow. It’s in the offers for help that stopped coming. It’s in the lack of birthday party invitations. It’s in the lack of considering the needs of our family when invited to attend certain events. It’s in the lack of being included to a girl’s night out because my life has changed so much from that of my former friends that we have little left in common, so they stopped asking. Maybe they stopped asking because I said no too many times… but I wish they kept asking. It’s in the sly comments that sometimes come from close friends and family criticizing our child’s symptoms or challenges as a result of our parenting.
Perhaps what hurts most, is seeing that my children with disabilities also experience this isolation. I have enough disabled friends to know that for many of them this is their reality, too.
No, we cannot attend your event because it is taking place in an inaccessible building.
No, we cannot come to the event because we know in advance it will be too loud, too fast, too bright, and too much for my children to handle the sensory overload.
No, my kid doesn’t want to participate in the church youth group because it is largely based on physical games and physical activities that make it hard for someone with a physical disability to feel like they are part of the group.
No, we are not coming because in the past, when we come, we are met with pity and my children have to deal with people’s condescending attitudes.
No, my children don’t have friends who are asking them to hang out outside of school.
Related: An Inclusive Education Does Not Always Mean Friendships for Our Kids with Disabilities
And I confess, I often isolate myself, too.
Sometimes I am too exhausted, mentally or physically, to say “yes.” Or perhaps I really wanted to go, but I am home and tired, and all I want to do is put on my pajamas and watch Netflix.
Sometimes, I don’t want to deal with the conversations that keep me on guard, afraid of what someone else may say. Previous experience has taught me people still use those with disabilities as a punch line.
And I have tried before, I have tried to be included, only to realize my priorities are so different I don’t enjoy the outing as much.
Nowadays, many of my “social interactions” happen thanks to social media — with other parents of kids with disabilities or with disabled adults.
No wonder our social circle now is primarily other people who have a connection to disability. These are the people who “get us.” These are the people who consider us, and if we show up and my kid needs accomodations, nobody makes it into a big deal. These are the moms I can talk to for hours, and we can talk all about IEPs, insurance, or our favorite Netflix shows.
And for my kids, it is the individuals in their own communities who have become true friends.
Our tribe has changed. We rely on each other. We need each other. We show up for each other even if it is across a screen. And those connections remind me I am not alone.
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Thank you for this article. I can relate to almost everything in this post. My son with cerebral palsy is now 18 years old. He is significantly cognitively impaired and non-verbal. For all of these years, I have been the “stay at home dad”. So if you think isolation is tough with mom’s who are in our situation, try throwing in the uniqueness of being a dad in that situation. There are much fewer men who are in that position as main caregiver. Ours was from a financial and practical standpoint (I’m a Physical Therapist). As many of you know, it’s almost impossible to have a full time job with a child with that much need of care. School breaks (a break of a week every 6 weeks, long holiday breaks, and Summers) make it difficult and if you hire a caregiver, you end up working to pay the caregiver. You make that choice because you know in your heart no one will care for him like his parents will. Camps are tough because of inability to potty-train. It always seems awkward for other mom’s or even some special needs moms when the dad arrives. It’s awkward with some guys as they can’t quite grasp the “stay at home” aspect to begin with irrespective of the special needs part. There have been and still are many lonely periods. Fewer then before, but it’s a very different life. I think as a special needs parents we celebrate so many things, but we do “mourn”, for lack of a better term, the plans we had made. I also believe as special needs parents we are much more adaptable and are excellent at making new plans! I’ve used my church to get out and socialize and have begun working weekends to just interact with people. My wife is fantastic and this is a team effort. I’ve a rambled a bit, and may be off topic, but thanks for letting me do it!
I can totally relate to everything you wrote. I have a 35 year old non’verbal autistic son who also has ocd and spd. To be perfectly honest with you, I have only one friend. For a time, I tried to reach out to others but no one seemed interested. I realize their children are younger than mine so perhaps they felt we had nothing in common. I have now given up in trying to find others who are in the same “boat” as I am. Thank you for sharing this. At least I know there are others who feel like I do.
I am so there with you. My son has epilepsy and is visually impaired so we’re very limited to places we go especially in the summer because heat triggers seizures for him. I have another son whose 15 that has learning disabilities and social anxiety issues so he doesn’t like to go a lot of places. My husband gets to leave and go to work and socialize with other adults. My adult daughter gets out and socialize too but me…nope! I have 2 friends that always invite us no matter what and that’s a blessing, but majority of my people are those on social media whose going through the same things. Thank you for this article!!
OMG! I love this article. I can relate to every one of you on some level or form. It seems we are all on the same journey with relationships/friendships. What I find interesting is we all need someone in our corner just like the general population, but struggle in this area. I have friends but more along the lines to go out but not for my family support, or mental health. I was diagnosed with PTSD long ago. I don’t care to claim it or use it as a crutch. To me I’m believing for total healing and restoration. So as you can see I don’t share much even when I have triggers and know when and what triggers it. I go through my depression alone. I’m a single mom with no support from the Dad. My parents have kept me alive through their support. Not a day goes by that I don’t about what will happen with that support fades out. It’s my dream to find other families I can lock arms with and make memories with like the general population. Through my experience and seems like some here too. Why do we find such a struggle to connect with other human beings regardless if they don’t have the same walk, same diagnosis, same xyz. Can’t we just be all different but still acknowledged what brought us together is the same journey and leave it at that; but convincing people that we are here to do life together is so short lived by selfish gain. If any one of you like to connect and/or are in Texas my email is eleal12 @ yahoo.com I live on the coast of Corpus Christi. #SelenaForever?
This is a great article! I can so relate! However, my daughter is on the spectrum but is highly functioning so people think she’s just “weird” and don’t get her. When she was eight we found Special Olympics and that saved her and us for a long time! Now that she’s older and in college we’re dealing with a whole new set of prejudices and misperceptions. Unfortunately it will always be an ongoing battle!
Hi from New Zealand,
Wow just wow! Firstly well done for speaking out and speaking TRUTH!!
It’s not easy just to be a parent of a child with disabilities, firstly it takes so so much out of us as a mother an or father when we find out our beautiful babies have something different about them. The emotional rollercoaster we go through just dealing with that fact is huge.
Then next we have to learn how to raise our children with these disabilities. An man it takes a LOT out of us daily infact some days by the minute.
So as if it’s not hard enough with these factors we now face the “world” the judgement the looks the people’s opinions. And then we try to rise above and be a part of “normal”.
It’s blimin hard work.
The list of things could I could speak about gee’s…..
My children were excluded from birthdays, didn’t get to experience sleepovers, or couldn’t go to school events because the school was concerned about their behavior an being able to cope with them at a event so they missed out.
Other parents didn’t invite them over because they didn’t know how to deal with them or catorgised them as naughty or too hard to cope with.
That’s hard enough to get yr head around an rise above but then you have to see yr beautiful children coming home from school with tears flowing not understanding why they were the one that didn’t get envited somewea. So again our heart breaks into pieces for them.
I one day had to get on the phone after hearing daily calls my daughter was having to another parent asking to have a play date with her daughter an being told not today not today, I had enough of seeing my daughter consistently ringing an being told “not today” so I took the phone from her one day an said to the mother “do you have any intention in letting my daughter come play with yours?” No was the answer: well my blood boiled, I was so hurt an frustrated an angry because instead of saying out right no she lead my daughter on for quite sometime. So I gave it to her. I got off the phone an felt so bad for loosing it with her, bit should I have felt bad? Actually I don’t think so. But we are faced with situations like this constantly an it’s not easy to keep calm all the time.
It becomes so much easier just to stay home an keep to ourselves.
I am now 41 years old, have raised 4 children with various disabilities, my youngest are (twins) 19 and I have to now try get employment. A whole new journey for me.
I have student loans from trying over the years to get trained while being a single parent of my children which I didn’t complete due to attendance because I was called out of class too many times to collect my child that was disterbing the other children. It’s not easy by any means but do we give up? No, well .. sometimes we take a wee break but then we get back up. Because let’s face the truth, IF WE CAN RAISE CHILDREN WITH DISABILITIES WE ARE STRONG.
Do not be discouraged by others their neigitive opinion is not yr truth.
I do believe God only gives the special ones to the ones he KNOWS in heart can deal an cope with them.
Much Aroha to all who raise children with disabilities.
Find or start a group for people who are going through what you are going through.
An remember to love the little moments an hold tight onto them.