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Is the world out to get us?

May 31, 2014

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I recently joined an online autism mom support group which has a massive amount of women in it (over 18000) from various walks of life and parts of the country and even world.  Our children are different ages, different abilities, just so very different.  And I read all the stories and question.  The pictures of kids graduating highschool, stories of finding true love, of becoming independent, moving out of the house give me hope.  Stories of confusing sensory issues, speech delays and problems socially make me feel not alone.  And stories of strangers poking fun, being openly hostile or unforgiving of children with special needs leave me… confused.

 

I think back to when I was a teenager and I felt as though I was under a huge magnifying glass.  The day my hair wasn’t cooperating, I was sure when I walked into pre-algebra EVERYONE noticed.  Or when I forgot mascara.  Or when my purse spilled out.  I felt like people actually cared SO much about my life.  When I was surrounded by people who were just as obsessed with themselves and so busy thinking everyone was caring about them.  Being a teenager is a funny stage.  And then.. I got to 30.  Telling people you’re 30 isn’t very fun. I feel like I should be grown up. Why am I sitting here at 6:30 drinking a Dr. Pepper to maintain lucidity? Shouldn’t I have this figured out by now.  But one thing that comes with getting older that is very freeing is realizing, people don’t give  half a crap about what you wear, or how you look or when you drop your purse as you think.  Hair look like crap?   There is hardly one person that is going to notice.  Now when your hair looks awesome, they might.  Otherwise, forget it.  The people you are around on a daily basis have already established their mental file folder for you.  Cute, charming, dresses well, needs to shower more, wears far too many yoga pants.  And one day or event isn’t going to make or break you.  And if they don’t see you enough to have formed that type of classification, you probably don’t care what they think anyway.

 

Sometimes I wonder if having a special needs child shoots us back into that teenager mental state where we feel that our family, our parenting, our choices and decisions, and most importantly, our child is under a magnifying glass.   Everyone is constantly analyzing, judging, berating, disassociating, casting aside our families.  And how true is it?

 

Rett has went through phases.  After initial diagnosis, he didn’t seem that off.  Because all 2.5 year olds are crazy.  I have one now.  C.r.a.z.y. They scream, throw fits, jump around, fall all over the place.  They want something, then you try to give it to them and they are screaming that you gave it to them.  Rett was easier than this neurotypical child.   By far.  Then as we closed in on 4 and progressed through that, sensory needs REALLY came out. And we had never dealt with them so Rett had 0 ideas on how to manage his behaviors or what was expected.  Hand flapping started.   Jumping around. Talking too loud.  Going off into tv land and acting silly or out of it.   Making weird noises, saying weird stuff.  ABA was working on him saying hi to people and asking them how they were or asking their name or introducing or whatever.  So he would say hi to everyone. Multiple times.  Ask people how they were doing. Multiple times.  Introduce me to his ABA therapist every time she came to the house.  And you feel… uncomfortable.  We started saying hands down, stop jumping around, shushing him, trying to explain that you just introduce people once and then they know each other.  Rett, meanwhile, was completely happy.  Every time someone asked me how old Rett was I felt like there was hidden meaning behind the question.  That they realized he was delayed and wanted to know how much.  Rett is also small so I felt like sometimes they were literally ‘sizing him up’. Whatever my own insecurities were at the time.  But eventually, and thankfully fast, I realized that it wasn’t everyone else making a big deal about Rett’s quirky sensory releases in public.  It wasn’t everyone else so overly concerned about how delayed my cutie is. It was me.   It was all me.  Sometimes people just ask how old your kid is because they want to make conversation in the park.  They are lonely and want to talk.  Sometimes people glance over and look because your kid is being loud and jumping around.  Not because they have autism. Because they are drawing attention.

 

I can honestly say that I haven’t had more than 1 or 2 instances where I felt like an adult was judging my child.  I’ve had LOTS of mental ‘let’s make up something that I might possibly be upset about’ but as far as concrete examples of adults being mean to Rett, not so much.   So joining this group of women who seem to constantly have horror stories of their kids being called retarded and asked to leave or go home or they took them to the pool and everyone was staring and whispering… I’m not saying that these women are lying.  But its funny how your view of events can change what actually was going on.  And I wonder if we as autism parents are alienating ourselves by thinking people care THAT much if our kid is jumping around at the pool not acting their age.

 

On the other hand, we seem to have our fair share of bad exchanges with children.  I go to the park and my kids seem to attract bullies and mini thugs like flies.  I’m not the helicopter mom. I do not go to the park to run around keeping my child from ever experiencing pain or getting into danger or doing a bunch of crap that they can’t do themselves and they need me to do for them.  I like to be close enough to hear what’s going on, other than that, they are on their own.   I have felt lately the push to take the kids to the park and the playground. To observe them playing and give them the opportunities to seek out buddies.  I think the combination of Rett’s increasing maturity, speech ability and our amazing social skills program has set the stage where he has the opportunity to succeed when it comes to initiating play and joining others vs where he was a year ago.  And its time to give him the chance.

 

So I wondered paired with all that, that this is the time to give him his chance and I’m so excited at how well he’s doing, why are we constantly attracting kids and having situations arise where I never want to go to another park again?! I want to hide them away from all these mean 4 year olds (that sounds pathetic right) and tell them how the world isn’t accepting enough or understanding enough or whatever enough for them.  And I want to be angry at parents for not teaching acceptance and playing with the kid that has no one to play with and whatever.   But then I thought about it. I thought about overhearing things being said and being given the opportunity to give Rett kid speak to stand up for himself.  I thought about teaching him to stop crying and giving the bully what they wanted but to use his words and gain back his independence.  I am sending him on his way to NOT need me to be there every time he is mistreated.  Because I was blessed with being a teacher first and a kid observer.  I know all the common kid phrases.  Some of them are not nice. But they are expected and kids know how to react.   I don’t see the point in teaching my socially awkward kid to say ‘stop being inconsiderate of my feelings’.   So yah he knows to tell people that they aren’t his mom and he doesn’t have to listen to them. Or he doesn’t want to play with them anyway.  Because THAT is what is going to gain acceptance.  Learning how to establish your pecking order the way other kids do.  And I thank God for the opportunities to be there when he falls. Because I can’t teach him how to get back up again if I never let him have the chance to fall down.

 

We went to the park two days ago and there was a little boy there. He must have had Rett’s small guy issue because he didn’t seem that old but he acted a lot older.  He answered all of Rett’s questions and let Rett tag along. And my boy was so excited to announce that he was playing with this boy.  So I called him over and reminded him that we don’t call people ‘boy’.  That you need to ask their name and then call them that.  So he did that. Then he immediately yelled over at me that his name was James.  Social skills are one step at a time, people.   Then he asked another kid his name and that night at dinner he was able to tell Tom both names.  My kid that couldn’t keep two of his ABA therapists’ names right remembering random kids at the park?! Who is this kid!  Yesterday we went to chick fil a and played at the indoor germ factory. He spontaneously asked a boy his name and was able to remember it (with a tad bit of prompting but it was a unique name he hadn’t heard before).   Progress is hard.  Progress is slow. Progress is exciting.

 

Maybe if you are attracting the bullies and negative Nancy’s of the world, instead of thinking how horrible this place is for your child, ask yourself what is God trying to teach others through you?  If they are acting un accepting of your kid and then you turn around and act rude, aren’t you justifying their initial reaction?

 

So I choose to thank God for the opportunities to help Rett grow through the kids that don’t show him the kindness of humanity. And maybe when I do have to step in and make a kid cry by talking to them in my teacher voice about having manners, using kind words and being a friend, I’ve taught them something too.  Those that seem weak or their behavior seems strange or you don’t possibly understand how anyone could love someone that different, sometimes they have a hidden army behind them.  And just because they seem like the easy target, doesn’t always make it true.  He is kind and patient and forgiving and sweet…. his mama not so much.  And I’m glad God made us both the way we are.

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