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What I Would Like You to Know About Autism

April 2, 2013

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Here are my two little loves wearing their blue. We all had blue on today, even little Thad.

My chef #Thad

A post shared by Laura Bailey (@lauralea1018) on

When he wasn’t baking cookies.

Right now there are thousands of parents and families taking their children to therapy multiple times a week.  Reading up on the latest research.  Looking for one more social skills group and wondering what to do about summer camp.  Each child that this family fights for looks different.  They have different abilities and different things they are working on.  Their past looks different.  Their futures look different.  There are girls and boys.  They are all different ages and races.  They are autism.

Autism looks different for each individual affected by it.  I think its silly to have to say that the AUTISM community needs to be aware of itself but as I’ve read up on the blogs today I feel I need to say just that.  ‘We don’t need a cure’ is easy when your son is being mainstreamed, in AP classes, involved in sports and scouts, has friends and seems to be making the journey to living independently and fulfilling his dreams.  Did he work harder than the average kid to get here?  Did you bust your ass right behind him taking him to the third therapy session that week to make that happen? I’m sure.  But he made it.  And for every case like this, there are a few parents who did the same thing and their child is non verbal and will be living with them for life.  To them, WE NEED A CURE.   Every blog I went to today that was talking about acceptance and not focusing on what they lack seemed to be Asperger or at least high functioning autism where the child was in middle school or older and doing well.  I didn’t see many non verbal parents preaching about acceptance and leaving the kids alone to be what they were meant to be.   And that makes sense to me.  But I think each side has to try to understand the other.  This isn’t easy for anyone.

This is what I’d like you to know about autism. Its hard.  Its hard for the child.  My son gets up and greats me with a smile.  He’s excited to begin the day, rushing in and saying good morning to me, jumping in bed and snuggling up.  And from the instant he opens his mouth, almost every sentence is corrected.  His grammar is off, pronoun usage is off, sentence structure a bit off, language choice doesn’t quite make sense.  I spent a big portion of my day saying ‘say ______’.  And he does.  But can you imagine that.  Every time you opened your mouth to talk, someone was telling you how you did it wrong.  But every time he says it wrong he’s teaching his brain a bad habit in communication.    He has put in unimaginable work for his language and skills.  Things that other children just pick up and do, Rett has had to practice and practice and try and try to master.   For Rett, he’s learning English like you would learn another language.  But he has no first language to fall back on.

Evie struggles with sensory issues.  All day long she’s putting things in her mouth and I’m telling her to stop.  Half the time she doesn’t even realize what she’s doing.  She bites Rett when she gets frustrated with him.  She is always so sorry, tearful, full of apologies and I’m sorries, hugs and kisses.  I don’t even think she thinks about it before she does it.   She also struggles with language issues although not as severely as Rett.

Its hard as a parent to find balance between celebrating your child for who they are when who they are seems so wrapped up in autism.  If I did cure my children, who would they be.  How could I want to take the person away that I have fallen in love with?  But at the same time, how can I wish on them a life of social difficulty, challenges with living independently not to mention the children they might have who will also probably have autism.  I feel as though their childhood has been robbed from them between therapy sessions.  And then to have their own children need the same thing.  It is difficult to wrap my head around.

But autism is not the most difficult thing to live through.  They are healthy, happy, well fed, well loved.   They eat 3 meals a day, play with toys all day and they each own an ipad.  They are backed by two very determined and committed parents.  When they are big enough, if they tell us they want to do something, we will do anything it takes to make that happen for them.

Autism is speech sessions and recognizing the alphabet at 15 months old.   Its being taught pronouns and verb usage and doing 63 piece puzzles at the age of 2.  Its refusing to try peanut butter and jelly but loving shrimp and calamari.   Its loving the feeling of being in water but hating the sand on the beach.  It is a mess.  A beautiful, interesting mess.   A mix of highs and lows and parents and children trying to navigate themselves through it all.

I think for this generation, a cure will not happen.   I will never know what my children are like without autism.  You can judge that however you want to.  Autism has stolen a lot from us.  It has rewritten our lives in ways we never imagined when we held or tiny preemie son almost 5 years ago.   It made our choices for us and I am still angry at it.   So for this family, I push for research for a cure.   For at least an OPTION for families.  And those that have children that can attend college and mainstream and do all the things the rest of us are lying awake at night worrying over, they can make the choice to opt out I guess.  Maybe wait for their children to be big enough to make their own choice.  I think there’s a valid argument to that also.

We don’t know what the future looks like for Rett and Evie.   Most people will tell me they will ‘be fine’.  Or ‘it will all turn out to be ok, don’t worry so much’.  But you can’t put your stamp of guarantee on that.  In life, there are no guarantees.   And rather than say oh ok they’ll be fine,  I’m leaning towards the ‘lets get them as much help as possible just in case’ type scenario.   And just like everything else, we’re saving for college and thinking about what life will look like if our children never leave.   My therapist told me that my concerns are some that every parent has.  This freaked me out more.  If neuro typical kids have all these issues also, then really what chance do my developmentally challenged kids have?  Then I put Rett in speech therapy twice a week instead of just one.

Be slow to judge and remember regardless of how a child is acting, they are still children.  They are a miracle from God.

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One Comment leave one →
  1. April 3, 2013 2:18 am

    I heart you. I heart your beautiful kids. I’ve never met them and I read these and I worry for them and for you. I cheer for them and you when I read about the progress or see the adorable pictures, and I think with a mother like you they can’t go wrong. Even if they never make it out of your house they’ll be fine because they have you cheering them on, worrying for them, watching out for them and making sure they are the best people they can be, whatever kind of person that is.

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