An Open Letter To The Bio Med Community….

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13413838_1742801249332318_1240436523_nI want you to know I see you.

You didn’t expect this, you didn’t expect that your child would be different.

You felt betrayed and alone when your pediatrician read out their autism diagnosis, and you hurt.

You still hurt till today.

You would have been a soccer mom, a cheerleaders mom, a mom on the PTA doing cake sales, car pools and helping organizing the prom.

Your son would have been a football star and your daughter? Homecoming queen.

Then college, university, a wedding, grandchildren and cosy Thanksgiving meals where you all sit around like the Waltons.

No loudly stimming child figured in this picture.

Instead you are faced with a child who’s autistic, or as you like to say, ‘has autism’, even better…’my child has autism but autism doesn’t have him!’.

You blindly walk out of the a Paeds office blinking through your tears, and you get angry!

You need someone to blame, many parents go through this and they settle….they accept.

Not you.

You go online and discover the rumor that vaccines cause autism, that the government have covered up this up, it’s a conspiracy!

You now have something to focus on, and it feels good.

You join a group on Facebook, an anti vax group full of mothers ranting that their child was lost, just after their MMR…that there are ways to recover the child…and you begin to believe it.

You ask your paediatrician and if he’s not a DAN doctor or a bio med quack he will tell you the truth, that it’s been proven there’s no link to vaccines and the MMR.

That there’s no cure for autism.

He’s lying of course you decide, he’s paid by big Pharma and needs to cover his ass.

You start your child on a strict gluten free casein free diet, and you look into chelation.

You look into parasite cleansing to, and that’s where things go rapidly downhill.

Is the line drawn here where you see parents posting pictures of their children’s bowel lining enough to drive you back?

How about the five year old who died in 2005 from Hypoglycemia after having all his calcium removed from his body with chelation? You saw something about that but you kept scrolling.

It was put there by big Pharma you decide….

This isn’t a long letter.

It’s a letter to remind you of someone, someone very important.

Your child.

‘But I do nothing but think of my child!’ You think indignantly. ‘I’ve got him on 40 hours ABA a week! He’s on the GF/CF diet! Chelation is around the corner, Wakefields a God! There’s a big Pharma cover up! It’s a conspiracy, give me back my son/daughter!’

You rage at Autism as if it’s separate from your child.

Your child’s gone nowhere.

We are here to tell you your child has gone nowhere, they are however very confused.

They know that you think there’s something very wrong with them, they know because even though they have had no tests they are allergic to Gluten so can’t have pizza with their friends, McDonald’s?

Satan’s food you hiss.

They know because they have to sit in front of a therapist repeating the same task over and over again, until it’s right in the the therapists eyes.

Until they can swallow the pain and LOOK into their eyes without flinching.

They feel it when you look at them, a mixture of intense love and determination, a slight bit of repugnance….

Understand this bio med mom.

Your child is not ill, they are not damaged and they are certainly not an epidemic to be feared and molded to your idea of perfect.

They are autistic and belong to a race of masters, of artists, musicians and inventors, scientists.

‘But my child can’t even talk!’ You rage, ‘I am their voice!’.

With the right tools put in place they can communicate, with signing, PECS or communication apps they can find their voice, help them do that.

They have their own community, we are here for them.

You can still be a soccer mom, your child can still be on a team though it may be a specially inclusive team tailored to suit them. All the things you wanted, the car pools, the cake making and PTA can all happen though it may take place at a different school then you imagined.

They can still graduate, they can still go to the prom, there are proms now for special needs teens.

They may get married, they may not, who knows? They may want to, they may not.

They may need intense care, that does not make them wrong, at fault or less in any way.

When you have a baby, make the decision to have a baby always remember you are having a person. A person has ideas, ideals and abilities of their own, these may not fit in with yours.

They may be a different sexuality yo what you bargained for, they may have a disability or mental illness, and that is part and parcel of having a child.

You should have in you the ability to love and accept unconditionally, if not then ask yourself who the one with the ‘fault’ is, you or them?

They are so young and they still have so much time, let them grow, cherish them and value them.

I promise you that if your 40 hours of ABA aka compliance training is dropped and replaced with OT, Speech and language therapy and play therapy your child will be happier.

They do not need to comply, they need to learn at their own pace, and you will not be letting them down by just letting them BE.

Look, really look at your child, that’s them.

There’s no other child hidden there, no child waiting to ‘break free’, no child that’s ‘MSSNG’, only one that will learn to hide their true self in order to please YOU.

Please, from an autistic, accept them.

It’s not about you.

It never was.

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  1. Margaret  June 12, 2016

    This moved me to tears.

    My son has ADHD and probable HFA, and it’s not hard to see where he gets it from as I score high on all “Aspie” self assessments.

    I treasure his uniqueness and he has now picked up my oft said phrase “Normal is a setting on the dryer”. He even has told ME that, when I cried “why can’t I just have a normal day” the other day.

    He’s’ homeschooled and he LOVES OT, his OT works hard to make sure he enjoys the therapy and that his “sensory diet” is rich and full of the motion and stimulation his sensory seeking self craves. We have plans to turn the basement into an at home OT gym with a ball pit and swing and hammocks and crash pads.

    I am so so so thankful I got out of the “Crunchy” community before any damage could be inflicted on him and that the speech therapist the play based preschool he was in suggested immediately noted that he had sensory and vestibular issues as well.

    I have been told, I’m not allowed to be at peace with his uniqueness because he’s verbal. That I should be angry, that my vaccinating him turned him this way and I should be angry.

    No. My DNA turned him this way. And even if the vaccines were responsible, I’d rather have him be the way he is period, full stop, than dead of polio.

  2. Lorraine  June 12, 2016

    Beautiful. <3

  3. Sr  July 1, 2016

    Thank you so much for writing this, we need to hear autistic voices load and clear.

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