Monday, September 24, 2012

I know you don't get it - and that's okay


I do try to stay away from controversy and drama. I'm not interested in political conversation. I think most people come into controversial discussions with their minds already made up, and with the goal of changing everyone else over to their viewpoint. I don't like to get into those types of conversations because I do admit I might be wrong - and I don't like being the only one who gives in a little.

I will listen and attempt to understand the other side, as long as you do, too.

So I'm not sure how to explain how I got involved in a Facebook discussion about families who live with autism and how it's not like life with only neurotypical children who meet all their developmental milestones.

What happened was, someone made a comment that said showed clearly that he has no idea that there are different kinds of kids out there, and not all of them are just like his.

And I know this happens all over the world on a daily basis. Last week I listened to a speaker talk about believing in the potential of our children. Not special needs children - all children. And during the discussion, she pointed out how of course all children had the potential to grow up and drive cars, go to college, get married. Such a typical comment to be made by someone who has never know anything but typical children. When she said that, I avoided eye contact, and she lost a little credibility with me. I know she was talking about typical children. I know she understands how some children aren't like others.

It was just - when people do that - make generalizations that exclude people with disabilities - it's thoughtless. I know they don't mean any harm and it's nothing personal and I try to ignore it. But it makes me feel a little excluded. Like I'm not really a part of the crowd she's talking to.

We can't make everyone in the whole world understand HOW living with someone with Fragile X or autism is different. And I'm sure I've said things that came across as thoughtless and hurtful to people for various reasons. People whose personal situations I didn't know anything about.

On The View one morning last year, they were joking about how kids are always making demands on their moms. Whoopi Goldberg (who I love by the way) commented that her 30-year-old daughter still calls her and needs things.

And they all laughed and nodded, knowingly. Those darn kids that refuse to grow up! HaHaHa!

What if your kids really didn't grow up? What if your daughter stayed a cute, helpless, and demanding baby for all her life? What if she really did require the care a toddler requires, for the rest of your life, and well beyond the time you are able to provide that care?

What if you really did have a 30-year-old toddler?

How would you like them apples?

I have friends who bring their kids to the gym daycare in part so they can exercise, and partly just because it gives them a little time away from the kids. And that's perfectly understandable. I totally get why you need to get away from the constant demands and complaints kids have.

Well what if you were frustrated and tired of the constant and nonstop demands and complaints, but you couldn't just drop your kids off there? Even if you wanted to legitimately work out. Your kids can't stay at the gym daycare, because the gym daycare workers don't have the skills necessary to care for your child.

We used to belong to a gym. It had a baby/toddler room, and a preschooler/young-child room, and a bigger-kid/activity room. They don't have a bigger-kid-who-still-acts-like-a-baby/toddler room. My boys don't fit into any of the categories they have there.

I know that I could have asked them to come up with the staff to care for my sons, so I could leave them in the childcare and go work out. It just seemed like more effort than it was worth. I'd have had to train their staff, and even then I'd have spent the whole time I was exercising, worrying that they were okay. It's useless to tell me not to worry. I can't just turn it off. And it would have been stressful for the boys, too, which I would have paid for, for probably the rest of the day. It was just a hill I decided not to climb.

Interesting way to look at it, since we're talking about exercise.

I might have rambled and strayed from my original point here. I think it might be this: is it reasonable to expect this world to make room for my kids, and for people not to make comments and generalizations that so obviously exclude people with disabilities? Should I be speaking up every time someone says something that makes me feel left out of the group? Should I have worked harder to find a place for my boys at the gym daycare?

The problem with speaking up is, it's hard. It's embarrassing. I might cry. I'll make other people uncomfortable.

I know I probably SHOULD speak up. I SHOULD train the gym staff how to deal with kids who don't act like other kids. I should be making this world more understanding and accepting and aware of people with disabilities, every time I get the opportunity. I just wish I could get through it without so much emotion.

No comments:

Related Posts with Thumbnails

Labels

#youmightbeanautismparentif (1) 2012 in review (1) 9/11 memories (1) ABA therapy (8) Acceptance (5) acronyms (1) advocacy (1) affection (1) aggression (8) AJ (11) Aliza (20) Aliza the playwright (1) All I really need to know... (1) Alphabitty Moments (1) American Girl (2) Ann Coulter (1) antibullying (1) anxiety (17) anxiety in parents of children with special needs (2) apple orchard (2) apps for autism (1) AppSmitten (1) Arbaclofen (13) Arbitrary Thoughts (1) ARC (1) autism (25) autism brushing (2) autism portrayed in TV shows (1) Autism Shines (1) awareness (15) backyard (1) baseball (2) bath toys (1) beds (1) behavior problems (4) being tall (1) Birthday Boys (3) biting (4) blog change (1) blog hop (2) blogging (3) books (8) bottles (12) brushing (3) bubbles (3) Burnsville Fire Muster (4) bus (1) Cabin Fever in Minnesota (1) candy (2) Carly Fleischmann (4) Carly's Voice (1) cats (1) cats and dogs (1) chewys (2) Chicago (8) childcare for special needs children (4) childhood (1) Children's Museum (1) chocolate (1) Christmas (8) Church (4) circumin (1) clinical trials (1) Clonidine (2) CNN Hero of 2011 (1) coffee (1) communication (1) comparisons (1) computer (1) Conference (5) cost of special education (2) Courage Center (1) Curcumin (1) daddy (1) dance (5) dance competition (2) dance moms (2) Dental surgery (1) dentist (2) developmental milestones (1) diagnosis (3) diapers (2) Diego (2) Disability Day (2) dogs (1) Dolphin Tale (1) Doomsday Preparation (1) Dora (6) Doritos (2) drug trials (1) DVD player (1) early intervention (1) earrings (1) Easter (1) ECSE Parent Retreat (1) electronic gadgets (1) electronics (1) Everything I need to know... (1) Evil Overlord (1) fall (3) falling asleep at school (1) families (1) family (6) fashion (1) fear (1) Featured (5) Feel Good Friday (10) field trip (1) fireworks (1) first day of school (4) Flash Gordon (1) Food Chronicles (2) food issues in Fragile X and autistic children (3) forms (1) forts (1) Fragile Face of God (1) Fragile X (28) Fragile X advocate (1) Fragile X and autism (1) Fragile X Awareness Day (1) Fragile X carriers (2) Fragile X in the news (2) Fragile X presentation (1) Fragile X statistics (2) Fragile X Writers (14) friends (5) fundraiser for Fragile X (1) funniest (14) Gabrielle Giffords (1) Galveston (3) games (1) getting carsick (1) Girls' Night Out (1) Giving Spirit (1) glasses (1) global warming (1) going home (1) Good Morning (1) Great Quotes (2) guest blogs (3) guest post (2) haircuts (3) Halloween (2) hearing test (1) Heaven is for Real (1) hippotherapy (2) holidays (5) Holland (4) Holly (3) home life (1) homework (3) hotel (1) hugging (3) hyperactivity (2) IEP Meeting (2) IEPs (1) in the news (4) inclusion (2) inspiration (3) integration (1) iPad (4) iPad apps (2) iPad apps for autism (3) IQ testing (4) Jack Jablonski (2) January First (1) Joke (1) journal entry (1) kids with Fragile X and animals (1) Kindergarten (6) Kindle (1) kisses (1) language study (3) learning to talk (5) leaves (1) lemonade stand (1) Lily (1) Little Einsteins (1) losing teeth (1) Mad Gab (1) makeup (1) mall (1) Mall of America (2) marcia braden (1) McDonalds (1) media sensationalization (2) medications (10) Melatonin (1) Miami (1) MIND Institute (2) Minnesota Bloggers Conference (2) minocycline (1) Miracle League (3) monkeys (1) mosquito bites (1) Mother's Day (1) movies (3) MVMOM Used Clothing and Equipment Sale (1) names (1) naughtiness (1) neighbors (1) nicknames (1) nightmares (1) normal (1) off topic (9) one thing leads to another (1) Operation Beautiful (1) oral sensory (2) orphan drug act (1) other bloggers (2) Our Wedding (2) outside (2) overstimulation (3) panic attacks (1) parade (3) parental stress (1) Parenthood (1) park (7) Partners in Policymaking (6) penicillin (1) people with disabilities (5) pets (1) pharmacy fun (1) photography (1) Photoshop (1) picnic (1) Pictures (3) pinching (2) pink shirt (4) Pinterest (1) playing outside (7) playing with toys (7) poem (1) politics (2) poop (4) potty training (10) Presents (2) protecting autistic children (2) rash (1) reading to kids (1) research (15) Retreat (1) riding a bike (2) Roger Ebert (1) routine (1) RSS feed (1) RUSH University (1) San Diego (1) Sandy Hook Elementary (1) Santa (3) schedules (2) school (37) school bus (2) school notes (1) school pictures (2) screaming (2) self image (2) self-checkouts (1) sensory (20) Seroquel (1) siblings with developmental delays (2) sick kids (6) sippy cups (11) sleep (5) smile (1) snow pictures (5) Snowstorm (3) social situations (7) speaking of the unspeakable (1) special education (2) special education evaluation (1) special needs kids (1) special needs parents (2) Special Needs Ryan Gosling (6) Special Olympics (1) spelling (2) spoon feeding (2) spring break (3) staying positive (2) stimming (4) Strep (1) STX209 (27) Stylish Blog Award (1) summer (7) Sunday School (1) Sundays (1) sunshine (1) survival mode (1) swimming (9) talking (13) talking to kindergarteners (2) Target (2) teacher's aides (1) Tegretol (1) Temple Grandin (9) Ten Commandments (1) textbook case of Fragile X (1) thankful (1) thanksgiving (2) that window/mirror thing (1) The Autism Store (1) The R Word (3) the rapid passage of time (1) The Right Things to say to parents of special needs children (1) The Santa Experience (3) the Shedd Aquarium (1) The Twin Thing (8) The Wiggles (2) therapeutic horseback riding (2) therapy (12) This is Autism (1) topless (1) trampoline (2) traveling with special needs children (12) TV (1) twins with special needs (3) Twitter (2) typical Fragile X characteristics (2) typical kids (1) typing (1) vacation (3) Vacation Bible School (2) video games (1) videos (8) volunteering (1) Waisman Center (4) water play (3) way-back-Wednesday (1) What I've Learned (1) What's your song? (1) when a special needs parent dies (1) Wiggles (4) Wii games (1) Winner Winner Chicken Dinner (1) winter (2) wonder (1) Wonder Pets (1) Wordful Wednesday (1) Wordless Wednesday (6) Words of Wisdom (1) World Autism Awareness Day (1) YMCA (2) You Tube (2) Zack (22) Zoloft (1) zoo animals (2)