Remembering we are not defined by Autism.

Today I finished reading “Love Anthony” as I took the train home from the city.

I shed several tears while I read the non-verbal thoughts of the boy in the story and his mothers journal entries.

I just knew that tears were inevitable after just a few pages of the book and I was painfully aware that before the end of the book I would have to face the fictional Mothers struggles and acceptance of her sons Autism and how it effected her life and his.

The rawness of the emotion that was pulled from me, a Mom just like the one I read about, was at times almost too much to manage.
There were just so many things being written/spoken by this character that were echoes of thoughts I too had had at one time or another while raising my son. Thoughts I have yet to speak out loud and absolutely never would be brave enough to write for fear or self-incrimination and judgment.The most severe judgement coming from myself.

At the end of this story the Author, Lisa Genova, had posted her own note. The wisest words I have heard to date on Autism were given:

“The spectrum is long and wide, and we’re all on it. Once you believe this, it becomes easy to see how we’re all connected”

This single thought provided solace to my aching heart.

Do we tend to forget that our children ARE children and not just autistics? Do we tend to see their differences as flaws and not as uniqueness and refreshment? No matter how severe or mild the autism can we not see the joy, the contentment and the feeling of belonging in our children’s ‘oddities’ and embrace and accept these actions knowing that that make our children happy?

The stimming that we would only pray could vanish forever, the rigidity in actions and choices of foods or games do we not see that no matter how society views our kids that we, the parents who know our children best, MUST see how pleasurable these behaviors are and that no matter how uncomfortable they may make us or others, they are comforting to our kids. Accept that in your childs opinion he is happy and feels loved.

Our children ARE children and we cannot forget to let them BE children. Carefree, explorational and naive. Let them learn their own way and enjoy watching the merriment this freedom provides.

Do not beat yourself up for feeling how you do and allow yourself to let your child be. No one can tell you what your child needs to find contentment and no one has the right to make you feel wrong when your child is happy.

I’ve hear the same comments you all have.

“Why is a 7 yr old acting like that? My kid wouldn’t”

“Isn’t that child a little big for that grocery cart?”

“Look at the tantrum, looks like that Mom needs to learn to say no!”

“Don’t they know how to get their child to behave?” “what is wrong with him?”

Ignore the ignorance. If your child likes to bounce and flap. Let him. Instead of wishing he would act like the others just look…really look and see his smile as he does it. THAT is happiness.


4 thoughts on “Remembering we are not defined by Autism.

  1. Mom here of a boy with Asperger’s and a boy with APD. thank you for this post. I’ve had to learn to accept my APD son’s oddities and weird things he says and just go with the flow.

    • 🙂
      I sometimes forget that the goal isn’t always to make my son fit in to society so he can live a happy life but to just live a happy life…I think we all can benefit from remembering that at times! For ourselves, as much as our children.

  2. Thank you for this. Sometimes we get lost in the stress and need to be reminded. I have 2 more days of my week at home with my two kids while my wife is on vacation, so I’m experiencing her daily life in a more real sense than ever before. My 6 year old daughter (classic autism) can be very frustrating to work with through daily tasks or her general struggle with communication, and it makes me very sad after I get upset with her. Her not-even-2 year old sister is amazingly smart and compliant, and it puts things in perspective, most often making more negative emotions for us. So being familiar with all the highs and lows, I thank you for putting your emotions on this page.

    In relation to how I found your blog, i.e. your husband’s Ink4Autism facebook page, my wife and I hope to one day soon get tattoos of this Swedish proverb: “Älska mig mest, när jag förtjänar det minst, ty då behöver jag det bäst”, which basically translates to “Love me the most when I deserve it the least, as it’s when I need it the most”. It almost brings me to tears every time I say it in my head, which means it’s about the most important thing I should be thinking of regarding my kids.

    Thanks again, and I’ll be reading your blog more often from now on.

    • Oh, that is so very lovely 🙂 It brought tears to my eyes! I think that is just the most perfect tattoo idea.

      I actually haven’t yet gotten my own ‘autism’ tattoo, I am still waiting to find the perfect sentiment to encapsulize LIncolns journey but I do have two tats right now that are similar to what I will be looking for one says “Each son is a lost piece of my heart returned home” the other says “the best journey begins by walking in anothers shoes”

      It is so very easy to get lost in the stress of it, and we all do it without even taking the time to pat ourselves on the back for constantly working through the stress on a regular basis, we only seem to notice the infrequent times we stumble and have our own little meltdowns when the stress becomes too much and we need a little reprieve.

      I created my page to share the feelings, stories and sucesses parents experience as I have found so far that it makes it so much easier to get through the bad days or thoughts when you know you are not alone. And we are not 🙂 WE have our spouses to lean on (even when we forget to) and we have many other parents os ASD kids to gain strength from as they make progress and find the right balance to give their child and themselves a happy life!

      Thank you for sharing your thoughts. Enjoy your lovely girls and have a great weekend!


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