Behind starburst eyes

Autism Everyday Video

This is NOT what my world is like at all! For Autism Speaks to have created this is appalling.

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Autism Speaks Needs to be Silent!

HomeFor those of you that haven’t read it yet here is a link to the press release that Autism Speaks released on November 11th 2013 about their summit being held from Nov.12-14:

While I am a Canadian, what is happening in the United States in regards to organizations like Autism Speaks effects us all. Why? Because of lines like: “We’ve let families split up, go broke and struggle through their days and years.” Actually, my husband and I are more in love now than ever, but thanks for assuming that we’ll get divorced because we have 2 Autistic sons! Our mutual dislike of washing dishes causes more issues for the both of us than our sons being Autistic. Seriously, literately, it’s true.  Go broke? Yes in the United States many forms of therapy are not covered or are so difficult to get covered that most families can’t access them in timely manners. Instead of using their funds for warning us that we’ll get divorced because our kids have different neuro-pathways, why not use those funds to provide grants for such therapies or to subsidize actual places that provide those therapies on a sliding scale payment plan based on proof of income and expenses? I have a secret to tell you, one that apparently has been forgotten by these people: parenting is HARD! I know, it’s a shock isn’t it? Being on call 24/7 for a minimum of 18 years, putting someone else’s needs and wants above your own every single day, figuring out how best to help a unique individual become the best person they can be and then following through even when it’s hard and your tired or sick or whatever isn’t easy. Guess what, that’s what every single parent out there is supposed to be doing anyways, regardless of the neuro-pathway configuration of their child!

“Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house.  That is – if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes?  Climb the furniture? Raid the refrigerator?  Sometimes – the silence is worse.

These families are not living.

They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely – 24/7.

This is autism.”

Try to escape or hurt themselves, yes those two are scary and both are things I’ve had experience in dealing with my own son, but seriously, climbing the furniture? Stripping off their clothes? Raiding the refrigerator? Those are “horrors”? Are you kidding me!!! Just this morning my neuro-typical daughter decided that a 10kg bag of flour needed to be dumped all over the kitchen, and I mean ALL OVER while I was in the bathroom. Did my eldest son have a issue with climbing the furniture? He sure did, so did his neuro-typical friend. I simply took him rock climbing to give him the same stimulation in a socially acceptable manner. Stripping off their clothes? Have you ever met a child that wanted to keep their clothes on? Do we as adults not relish the days we can have pajama days? The reason is simple, it’s more comfortable. If keeping clothing on is an issue, why not work out what fabrics the child enjoys the touch of and sew some clothes for the child? If one doesn’t have the time or knowledge of how to make clothes that’s okay, there are plenty of seamstresses that can be hired to do it for you. OR if short on funds and a seamstress is too expensive, why not contact a local high school and work out with the home ec. or fashion teacher (or whatever it’s being called currently) that some of the sewing projects done by the students are clothes for the child/ren in question?  Again there are TONS of solutions if you’re willing to look for them, and as a parent that is what your supposed to do: HELP your child to thrive! And there are plenty of parents of Autistic children that do exactly that, every single day! To say that we are existing but not living is utter horse manure!!!

My entire world is better because of my children! Each one is perfect exactly as they are. If I were to be offered “a way to eradicate their Autism” I’d refuse, wildly, passionately, whole-heartedly refuse! Why, because to do so would be to kill the child I have and replace them with someone else. I don’t want different children. I want the ones I’ve been blessed with.

I want my C exactly as he is, my bugaboo.  Who turns notes into movements so fluid and sure they bring tears to my eyes. Who runs as fast as he can, trampling anything in his way to get to his siblings when they cry. Who tucks his chin into himself, as his lashes lower and his lips turn up every time he says “Thank-you” when I tell him I’m so proud of the young man he’s becoming. Who sings offkey when listening to Green Day. The boy that looks at me with liquid pain running down his face when he’s gone past his limits and it hurts more than he thinks he can bear to be so overloaded, the boy that doesn’t always understand social settings or skills and still whispers in my ear “Is that a joke mum?” when he’s not sure about what someone said. The boy that first taught me what it was like to love unconditionally.  The boy that first taught me how to be a warrior that fights relentlessly: FOR him.

I want my N exactly as he is, my turkey. (He was born on Thanksgiving) Who looks at me while trick or treating and says “You fix everything” Who loves glitter paint, and awkwardly sticks his face in his brother’s and tries to ask him why he’s crying when C is upset. The one that loves Lightening McQueen anything. Who meticulously peels every wrapper from every crayon in the house. Who only just started to be able to deal with receiving kisses sometimes when not in the peaceful repose of sleep. Who isn’t potty trained at 3 years old, and who won’t be for an unforseen time. The boy that taught me true patience. The one that showed me that just because it’s not reciprocated in the ways I was used to didn’t mean love doesn’t exist, and to accept the ways he was comfortable expressing his love.

Both my sons are perfect, exactly as they are. As is my daughter. All three provide different parenting challenges, and all three provide moments of joy so great I look around to see if the very air around us is sparkling as bright as my heart from it all. So don’t EVER tell me I’m only existing! Don’t ever tell me that my children are a burden that I must bear! For the REAL burden is the knowledge that organizations such as Autism Speaks is held in high esteem by so many. The REAL burden is not my children, but your malignant lies and misinformation spreading like a cancer throughout our society, diminishing the ability of others to see the gifts I have been given in the shape of 2 sons.

“How long before they break?” Seriously!? I will NEVER be broken because of sons. Actually, I have been already. The mold of the selfish maiden I once was prior to my eldest son’s first breaths has been broken. In her place is a mother. A woman of untold strength, given to her through the transformation into motherhood. A woman who knows how blessed she is to be the guide to 2 such incredible individuals on their journeys in this lifetime. A woman of sharp enough mind to see past your “we feel SO bad for those stuck with such a terrible fate as being a parent to an Autistic child” to the reality that you don’t know a damn thing about MY sons. YOU are blind to the beauty of their existence, and by direct extension, the beauty of MY existence because of them. A woman of strong enough character (or just plain loud 😉 to openly state: Autism Speaks NEEDS to be SILENT!!!

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It’s not freedom if they can’t chose for themselves

I’ve read many things online lately that speak of the acceptance debate about Autism right now. Numerous of those articles say things like “It’s not true acceptance of the person if you try to teach them social skills, because that’s just trying to change them, not accept them the way they are” I disagree with that idea.


For me personally, I feel that teaching all the social skills as they are now called to my Autistic sons is akin to teaching spanish to my children who were born speaking english. Why would a parent do that? What could be gained from a child learning a second language? You guessed it, they could communicate effectively to gain what they needed from a vast array of situations with more people than if they only spoke one language. Does teaching them spanish imply that their first language and native tongue will always be less than the second one they were taught? NO it doesn’t. Does teaching them spanish mean that I will not listen to them or converse with them if they speak in english instead? NO it doesn’t. It means that should they decide at any given time that speaking in spanish would be more effective in a specific situation for them to obtain what they want or need that they can. Not that they have too, just that they have the option to express themselves in both languages, and that they can choose either option at their own discretion.


I think the difference between what I believe and the persons stating it’s not acceptance if you teach “NT” social skills to your autistic child is that I’m NOT saying they HAVE to use what I’ve taught them, I also plan on teaching them how to bake a cake from scratch, doesn’t mean once they’ve learnt how to do so that from morning till night they have to bake cakes non-stop. It just means if they want too they can, and I’m ALL about them having the freedom to choose, but it’s not freedom to choose if they aren’t allowed to explore all their options and then choose which one/s are best for them specifically. I also won’t teach them that they are wrong or less for their natural state or “native tongue” to continue with my original metaphor, just a simple statement of fact that it might be useful to also know this language in addition to your own.

When I teach a “social skill” I explain in detail what the general perception is, what my perception is, and encourage their own thoughts and feelings to be discussed about it. Such as when my eldest wanted to wear his transformer’s costume to the mall in May. I asked why first and he said because it’s fun to pretend he’s Optimus Prime and he loves how soft the costume is his Aunt and Uncle got him. I told him I agreed it is fun to pretend, and it is a very soft costume. I also told him it was perfectly fine with me. I did explain that some people might think it was strange that he was wearing a costume when it wasn’t close to Halloween and they might say something unkind or mean to him because of it. But that I knew how much fun it was to dress up and that as long as he understood that might happen I was proud to hold his hand in any mall while he wore any outfit he could find. He decided he’d wear it, and when there was a rude comment about it he replied “I’m wearing it so only my thoughts on my costume matter” and off we continued in the mall.

SO I did not force “NT” social skills, nor suggest that I felt he was wrong or bad for his choice. I reinforced my unconditional love and acceptance for him exactly as he is, but also told him the truth of how it might be perceived to allow him the choice of “did other’s perceptions of him matter to him in these circumstances” clearly that moment showed a definitive no, but at other times it might be a yes and that’s okay. Because it’s still allowing his feelings, thoughts and wants to ultimately dictate his actions, which is exactly as I think it should be.

But one of the things that I’ve read and seen in my own sons time and time again is that the inferred portion of any interaction is not always understood or picked up on. So it’s my job as their first teacher to teach them all of the hidden things they don’t automatically pick up on and then let them decide how they wish to proceed. That to me is the true definition of parenting, to help them understand everything and decide what is best for them personally from there.

I parent this way because I started with one goal in mind for all of my parenting choices “to ensure my children’s happiness” Then I simply work backwards from that goal by asking “What will make them happy?” or “Will ______ make them happy?” Sometimes I know, and sometimes I have to either ask them or watch and see. I then base my choices from that, because it’s not about what makes me happy, it’s about them. They are first, as they should be.

For example my youngest son has no interest in other children his own age, while I know that some people feel I should “encourage” read force him to interact with other children to make him more social and therefore more socially acceptable I don’t. I bring him to places with our family because he is an integral part of our family, but if his bliss is to spin the wheels of his toy cars and not play with other children his age that are around him I’m fine with that. Why, because he’s happy. And all I want is his happiness. I truly believe that both of their happiness, heck anyone’s is based on being able to have their wants and needs met on a consistent basis. So yes I’ll continue to speak in english with them, while I also teach them spanish so they can decide which is right for them to be heard clearly and their needs and wants to be met in the manners they wish for them to be.


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