Friday, June 11, 2010

Millions of people have special needs—so why do I sometimes feel so alone?

I took a bus the other day, the first time in awhile. The train in New York is a lot faster, but the bus is more relaxing (well, as relaxing as transportation in New York can be). I got on, paid the fare, glanced at the "Won't you please give this seat to the elderly or disabled?" signs on the front seats, which always make me picture Max riding the bus someday.

A guy in a wheelchair was waiting at a stop, and the bus driver lowered the bus so he could wheel himself on. I wasn't watching him; I was watching the reactions of everyone else on the bus, who either outright stared, averted their eyes or seemed to look mildly annoyed at the time this was taking.

I felt a certain bond with this man in the wheelchair. Me, the mom of a kid with disabilities; him, an adult with disabilities; both of us making our way through life as best we can, though obviously our challenges are very different. I counted the number of people on the bus: 54. I wondered whether any of them had disabilities or kids or relatives with disabilities. It's something I find myself doing on occasion when I'm in a crowd, like at a concert in an arena or a show in a theater. You just wonder.

The stats say an estimated 19.4 percent of people in this country—48.9 million people—have a disability. Almost one in five people have a disability.

The stats say that more than 4.7 million children in the U.S. under age 18 have "activity limitations," an estimated 6.7 percent of all children in this country.

The stats say nearly 800,000 adults and kids in the U.S. have one or more symptoms of cerebral palsy; every year, about 10,000 babies born in the U.S. will develop cerebral palsy.

The stats say an estimated one in 4000 children have strokes sometime around birth (which is what happened to Max).

The stats say that the number of children with autism or an autism spectrum disorder is 1 in 100.

The stats say Down syndrome occurs in approximately one out of every 800 live births in the U.S. (3400 babies a year) and that the number of people with Down Syndrome in the U.S. is 400,000.

So many kids and adults with special needs, so many parents out there with kids who have special needs. And yet, sometimes you feel so alone in this journey. Of course, I have friends to talk things through with. I've found amazing company in the blogosphere and other online outlets. I have parents at Max's school to connect with. I have great resources, great doctors, great therapists.

But sometimes, it's just you and a guy in a wheelchair riding the bus, alone against the world.

Do you know what I mean?

Photo/Luc Kordas


  1. I totally understand what you are saying! :o) My son has really bad Tourette Syndrome and sometimes people stop & stare at him like he has 3 heads. This has made me view people with disablilties so much different. People who are not accepting of all people should be ashamed of themselves.

    Have a great day :o)

  2. Of course. I know EXACTLY what you mean. It's all down to human nature, I think, these attitudes you saw. See, with humans, empathy often comes out of personal experience, and people who don't deal with disability up-close on a regular basis just don't want to start now, not if they can help it.

    Some of these people are simply busy, while others are clueless, or feel awkward, and still others are self-centered or downright mean. Some people still, on a visceral level, facts be damned, believe "it" (insert disability) might be "catching." That's why they avert their eyes, pull their children away, do that "fast walk" away from you--you know what I mean. They want to deny the reality, block it out, not see it, not "catch" it, pretend it isn't there.

    Thanks to the ADA, there are sufficient accomodations so that people with mobility issues can get out and about more. Back in the dark ages, you never would have seen a wheelchair on a bus, because there would have been no way to make that happen. No hydraulic buses, no curb cuts or ramps, no wide sidewalks. The person would have been hidden in a house or a "home," never allowed out "for his own good."

    One thing that will come out of these years of terrible war we have endured as a nation will probably be a more visible place in society as well as improved accomodations for disabled people, owing to the number of people coming home alive but maimed and missing limbs, some ambulatory, others in chairs. Kevlar has reduced the death toll more than a lot of people realize, but a lot of those kids have to live with major challenges as a result of their wounds.

    Still a long way to go, though.

  3. I totally get it. My 14 year old has PDD-NOS ( mild autism) and an unidentified mood disorder. He has these psychotic breaks that only last like 5 minutes, but we have to literally throw him to the floor and restrain him. We usually end up with bites and bruises(huge ones). I know plenty of parents of children with autism, but no one with a violent mood disorder too.

  4. Yep.

    We have troubles because Jonathan isn't outwardly disabled. You look at him and you can't tell anything ever happened. But it did, and he has some mild issues. But no one wants to give him services because looking at him "you can't tell". So I don't fit in with the typical kid crowd, and I really don't fit in with the special needs crowd. Maybe I need to make my own little group!

  5. Been there before, Ellen! I watch people's reactions too. Had a rash of people staring at Faith lately like yesterday at the doctor's office. ARG!

  6. I sometimes feel alone because we sort of sometimes isolate ourselves because it is just easier to stay home with T-man at times. But we do try to make a concerted efforted to get out there. I kind of feel like it is my duty to educate people, whether they like it or not. No one we know has a child that is as severely disabled as ours so they don't know what it's like day to day - only my husband and I know that (and our younger son). You are not alone - your blog has made me feel so much less alone in all this, because you say the things that many of us are thinking.
    Wonderful post!
    Thank you - Kristen

  7. Many easily identifiable 'groups' measure-out at 20% of the population.

    Some of the 'work' for living in the world differently has to be done within. We all have to resist or adjust to feelings of rejection.

    'Tis good to mix among the groups we identify with. Lots of support given here. You do a good job here with this blog, Ellen.

  8. Yes! There are many days I wish I could more eloquently explain what it's like to love and live with a son with DS. It's the "secret" bond you have with every other person with a disability out there, the smile you give one another when you connect.

  9. I'm so grateful to you for posting this...I've wondered what was wrong with me. I've had a lot of support, and I know there are others out there who have autistic children, yet I still fee SO ALONE so much of the time! Thank you, thank you for this blog.

  10. I know the feeling sooooo well!!

  11. The title got me to read this. I've never felt more alone than lately and yet I am far from it. It's super freaky and hard to navigate. I have chosen isolation, which makes it all worse. always a good post.

  12. I can totally relate! Though I grew up with family members who had disabilities of various degrees, it's different now. We are helping raise my grandson who is 2 1/2 years old, but looks as if he's 9 months old (size wise), he has various disabilities (feel free to check out our family blog, or his caring bridge site - worst is with my in-laws, because they have never been around anyone with any disabilities (unless you count my family). They are always asking if he can see or hear now, and when is he going to start walking! They're waiting for
    the miracle to happen. I have a good sense of faith, but I truly believe that Renzo was given to us to bring our immediate family closer together. He has taught us so much. And he is the way he is to teach us. But, on the other hand, (and the possible subject for one of my future blog posts)is why is it that we were chosen? And quite possibly twice (our oldest daughter after years of trying is finally pregnant and there is a high chance that the baby will have some sort of disability). I feel so guilty when I think about it, but why twice in our family? However, as I shared with my daughter, at least we have all had a great learning experience with Renzo, and have made great connections with new friends, therapists and doctors who can hopefully continue to guide us if we need it with my granddaughter.

  13. What an excellant blog. I have a son with ASD and yes it is the isolation that gets me the most. Parents of my older son who invite him over to play but not my younger son yet we have hosted (for want of a better word) their other children over to play even if they were a year or two younger or older. I almost feel like putting out a letter to let them know that it's not contagious!! Better sign off now before I start a real rant of frustration.
    Once again a great blog.

  14. Ellen, I do know what you mean and I ponder all these thoughts alot! thankyou for writing them down and sharing yours. Bron xo
    As it happens in the past 2 weeks I have happened upon 3 middle aged men on separate occasions who have CP and we have spent hours talking as they all live locally and I am better for knowing them.

  15. To some extent, I feel like people don't like to talk about and so you don't realize how common it is. I was talking to this hair dresser the other day--talked to her plenty before--never told her a thing about Charlie, and it turns out her daughter has a rare genetic condition and is in a wheelchair. We have something in common, but I never brought it up because I didnt' feel like having "the coversation."

  16. I was picking strawberries today with my little ones. It is tough moving for Ben in a strawberry field. Big steps, fragile bushes, but we have gone every year. Today he got tired of crouching in the field and asked if I could give him a lift to the car. I swooped him up, and carried him to the car then headed back tot the field. Few minutes later, "Papa" stopped by to tell me how much fun he had watching Ben in the field, popping his head up between the bushes to tell me when strawberries were bad rather then just picking the good ones. He said "The best part is that he is out, just enjoying the day and the world." Soon after, I met his granddaughter who, upon noticing that I didn't have help any more, decided to help me pick instead of her Papa. This charming girl had her own basket of chalanges. Instantly that different, but not uncommon, comment took on new meaning. He was just a man who has maybe felt alone in this world, extened a hand of understanding. We were not alone, if only for a moment.

  17. I just had my support staff people moved away from me at work, and it totally threw me for a loop. I didn't see it coming and and it upset me enormously to have the little nest of people who know what my life is disrupted, and to know I have to educate someone new, or keep feeling more alone, really made me bawl. I don't want to try to tell some young kid who hasn't known me for years why I am racing in late from therapy and all of that stuff. Because even with these folks not being part of my special needs world, at least I am not starting from scratch. and all this even though I am n many ways lucky, what with my daughter looking so normal and passing for normal as long as I carry her. Huh. Still sucky. This lonely part really does suck.

  18. I definitely understand what you are saying. We are surrounded by parents with typical children. We do not have friends with special needs children (well except one family that we don't see very often). It can be very lonely.

    Like others have mentioned, we do have a tendency to isolate ourselves and that does not help matters.

    We also don't have many opportunities to meet other families - most therapists come to our house so we aren't sitting in a waiting room chatting with other families. I am hoping that when Emily goes to school we will have more opportunity to meet other families with similar situations. It would be great to have someone who has been there done that!

  19. Ellen, I used to feel the same way. This post inspired me to post a on my own blog something that changed my viewpoint a few years ago. We ALL have something....

  20. I do. Even going to the dentist gets stares. We have to reserve a quiet room, and people look at me, like...why does a big kid like your need the quiet room.

    They feel they have carte blanche to stare at anyone who is out of the norm.

    Where does that come from???

  21. totally understand...totally...


Thanks for sharing!