Tuesday, January 14, 2014

It's a big, scary world out there - a discussion of going out in public

Are you like me? Do you live in two worlds (or more)? One world is the safety-net of your own home; the place where the occasional spinning child does not stop dinner time or where a screaming child is not only the norm but expected. You know, home -- the place where we can be ourselves with no judgement at all. Then, there is the world outside our door. It's big, it's scary, and it is totally judgmental. Most days it may seem easier to hide inside the safe-zone, but sometimes you need to take a risk and take a step into the real world. Maybe you have mastered the art of traveling in public and the judgmental stares and "why can't you control your child?" looks just roll off your back. Or, maybe you keep your family home, where you feel safe. There is no right answer, as you are in charge of your family. However, by keeping your family hidden from the public, I really think you might be depriving the world of getting to know what makes your loved one special.

Our Facebook page was abuzz when Bri posted the question: Just wondering, even if there are some parents that will never admit this. I am curious on the number of parents that take their disabled children out in public versus the ones that do not. I have always taken my ten year old with me no matter where I go. I don't think that many parents take their children out. I hardly ever see a child with autism out in public. For my child I feel this is important with shaping her life, which she deserves to have the same experiences as other children. 

Zoe says: My son is always with us. Having said that, he is getting a lot better managing his anxiety. I too believe that our children shouldn't miss out on anything.

Wendy says: My 20 year old is severely autistic and my 5 year old has SM and SPD and they go everywhere with me. It has its challenges but I wouldn't do it any other way.

April says: I have my 16 year old daughter with me everywhere I go and always have since she was born! We didn't think it would be fair to any of our family to spend our lives at home not enjoying life. We have taken family vacations all over... Hawaii, Disney World, Sea World, Myrtle Beach, Disney Cruises, etc.. Just to name a few. She loves going place and knows to stay with us. She is nonverbal. I am glad we started taking her everywhere as a newborn. I also know people who won't take their special needs children out.

Tabby says: I take my 6 year old son almost everywhere. There are days where I have to locally run several quick errands in a row in the short time frame available between therapy sessions which I know will overwhelm him (ok,ok, and me, lol). On rare occasions I will ask Grandpa if he can hang out with him so I can just "get it done". I also must admit a friend recently brought up the idea of a spontaneous road trip. Our first thoughts were that my son goes everywhere with me, so he was naturally included in the idea. But I then thought, if this spontaneity will make him uncomfortable and his need for schedule will keep us ladies from having a little break from structure, maybe it wouldn't be so bad if just this one weekend, one time this year, I went without him on a truly spontaneous girls weekend away, eating at new restaurants and visiting new places without fears and tears. We'll see... I miss him when I'm gone and he gets very insecure when I am not around to ensure him that he will never be abandoned.

Charlotte says: I grew up with a severely disabled nephew (my mom raised him). We are the same age. I think it taught me so much about kindness and compassion - even in second grade when he had a fit and ate my homework (literally). I told my teacher it was okay, that we had to be understanding!  I now make sure my two children (4 & 2) are exposed to all people in all walks of life. We belong to our local YMCA which has amazing programs for disabled individuals and we support our special Olympics. Exposure is the best learning tool for everyone involved in my opinion. And when we see a child having a difficult moment, I just explain to my children it okay and that they are expressing an emotion the way their body lets them.

Dani says: I've always been big on taking my daughter everywhere I go. Not only do I not have other options for child care, but I feel she's learned loads of life skills this way. It's important for people to remember that not all disabilities are visible. So, it's not entirely fair to assume that you don't see families with kids with disabilities out and about just because you can't identify them as disabled.

Kathy says: We take our son out all the time. He has Down syndrome and autism, so you can "see" his disability. But at the same time, we are conscious of what types of public places will be too much for him to handle. We do not take him to sporting events as he cannot handle crowds that cheer loudly. If he will be overly stressed by it, then we won't take him.

Alicia says: I take my 7 year old autistic daughter with me when I have to, but I have to pre-evaluate my destination. If it's an environment that i feel she wouldn't do well in, I skip it or find a place for her to stay. Just not worth it to upset her or myself.

Toni says: My son is 6 and has autism, and we take him everywhere. Movies, restaurants, airplanes, parks. I think it makes a difference in exposing your child - disabled or not - about appropriate behavior in different settings. Don't get me wrong, my son definitely can be trying at times, but he has improved over time.

Paul says: My son comes everywhere with us. I'm not sure how anyone can say they don't see autistic children out with parents. I'm pretty sure there isn't a way to identify an autistic child by looking at them.

Amy says: We take our son everywhere all the time. (He has Down syndrome). Every once in a blue moon, I run into a family like our, only they are not connected to the Special Needs or Down syndrome community in any way - by choice. It reminds me there must be some families hidden away, for whatever reason.

Shirley says: My son has epilepsy and autism. He looks like a typical 14 year old, so we definitely get a lot of looks when he has a developmentally 3-year old meltdown or he decides (loudly) that he wants checkout #10 but it's closed and he won't budge. But, I don't let that stop me from taking him everywhere with me. He can't learn those life skills at home. Because his disabilities are not visible, we don't get the cute smiles. I pretend it's just the two of us out there and make a choice to not let other people's opinion or discomfort interfere with what my son needs to learn while out in public.

Kelly says:  For me I think it depends on what kind of out in public you mean. I have a 14yo with ODD and possibly Aspergers and a 10yo with DS. Last night we went to a small mall to trick-or-treat although it didn't end well and we left early. We go to the library and teh park, my son was in football for 4 years and my daughter never missed a game. On Sunday we are going to Disney on Ice (praying it goes well, but preparing for the worst). and on special occasions we will dine out, but not often. For the most part I try not to take my kids grocery shopping, why make them miserable if I can go when they are in school.

Juliana says: Bri, I totally agree with you. I take him everywhere, even if it's hard work and we are known to come back home in tears sometimes - both of us. I think I need to feel like we can continue some kind of "normal" life, not only for my son's learning and enjoyment but also for my sanity. Social isolation is such a terrible issue and being 'out there' doesn't necessarily help us connect with people alas locking ourselves away from the world is simply not an option for me. I think thanks to this approach my son is known to embrace changes, despite his diagnosis of severe autism. And yes, very much like you I keep noticing how few other such families we run into. We may encounter harsh judgement in public, but just about every time i come across someone giving us a harsh look/word straight away there is another person right by our side smiling and praising us both. Universe has nice little ways of keeping us going and rewarding our efforts. My biggest reward is a healthy tan and long walks on the beach for our whole family. And as for grocery shopping, that's a work in progress.

David says: I doubt very much that anyone would admit to deliberately isolating their children and keeping them "locked away". My 8 year old stepdaughter with DS is very much part of the family and does whatever her more able brother do, although with consideration for her specific needs.

Clare says: I was once told I was "very brave" to take my daughter with Down's syndrome out - and this was from another parent with a child with additional needs (she had chosen to go out without him). Seemed ridiculous to me - if "normal" people can't cope with seeing my daughter that's their problem as far as I'm concerned!

In an early post, I talked about Handling Public Staring and shared some of our fans' thoughts on the subject. I think what I've taken away most from the comments posted on this question is two-fold. My first reaction is that: We, as a collective special needs caregiver, understand how difficult it can be to take our kids out in public, but we certainly appreciate and embrace the importance of society in our children's development. We do not hide away; we do what we've got to do. The second is that we need to remember not every disability is visible. That you cannot see autism or numerous other disabilities, but that doesn't mean they don't exist. I highlighted Dani's comment because she discusses just this idea. It's not fair to assume you aren't seeing disabled individuals out in public; you may not know.

I take my girls with me, mostly out of necessity. Three girls, one me -- no child care! Little Miss M needs her special needs stroller for most trips and Baby-Z must still be pushed everywhere. So, if I have all three kids to myself, we must make our trips short and necessary. However, on weekends or days my husband has off, outings are something I love to do with each child individually. We structure these based on how the child is doing on that particular day and what needs to be done. I've never kept Little Miss M home because she has epilepsy or because she has autism. I have kept her home if I know an environment will be too overstimulating and cause issues or if she's seeming on the verge of illness and the germ-factor just isn't worth it.

Remember, also, there are  a lot of understanding and compassionate people you will come across out in that big, scary world. Yes, you will encounter ignorance and even stupidity. But, for every time you must deal with those situations, I hope you encounter a person who seeks to understand and commiserate. I leave you with this story of a patron in a restaurant who noticed a family doing everything they could to help their special needs child be comfortable throughout a meal in a restaurant. I hope it puts a smile on your face, and reminds you that much like the Boogie Man, the big and scary world is only as scary as we let it be!


Amanda takes her kids to Target so frequently that they are able to direct her on what to get!

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