Autism parent vs. parent of a child with autism

I received this comment yesterday on my post “50 things you should not say to autism parents” and I wanted to address it.

“First and Foremost..You are a Parent of a Child!!!!The Child is always first....same with the Parent...It is not the Autism Parent or the Autistic Child.....Please correct...” – Anonymous

Thank you so much for reading my blog and commenting with your concern.  I too understand this issue and find it very important that my daughter is looked at as wonderful, unique Lexi.  Not as a disorder.  I have corrected people on occasion that she is not autistic she has autism.

Guest Post - Special needs photography tips & autism fundraiser

This post was co-authored by Christine Passey - Autism Mom at Autism Island, and Heather Sander – Photographer at Heather Sander Photography, in preparation of Heather’s upcoming Autism Awareness Fundraiser for the Carmen B. Pingree Center for Children with Autism.  Heather decided to specialize in special need photography because she has a love for special needs children and families since she herself has a sister with special needs. 

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Getting great photographs of your special needs child can be extremely difficult.  Because of this we’ve compiled a list of things that can help you prepare for individual and family photo shoots.  Keep in mind that you’re going to be introducing your child to a stranger with a scary looking contraption and even with all the preparation in the world, it can trigger a negative response.  Never be afraid to tell your photographer that you have to reschedule or you don’t think it is working.  A good photographer will be understanding and will work to help you achieve a great family photo shoot; whether that means waiting for your child to calm down, rescheduling the shoot, or even showing your child their camera so they can get used to it.

Analogy of the Hang Nail

Sunday morning didn’t start great.  Lexi was awake at 7 am as usual, and as usual I stayed up too late the night before.  But being the responsible mom I am, I woke up when I heard Lexi singing in her room, got her breakfast, turned on Color Crew, and made my morning latte.

From the go, Lexi was not having a great morning.  She seemed in sensory overload and no amount of squishing, squeezing, and spinning seemed to help.  But things made a turn for the worst when Lexi came screaming over to me, sat in my lap, shoved her foot in one of my hands, and took my other hand and placed it on her big toe. 

Oh no!  The dreaded hang nail.  Hang nails are an all-hands-on-deck kind of thing around my house.

Guest Post - Coming Home

I'm excited to feature my first guest post!  It's by fellow Autism Islander Mirella Petersen.  Mirella is the current President of the Utah Autism Coalition. She is passionate about helping parents access evidence-based treatments for autism and implementing legislation to protect the rights of people living with disabilities and their families. She and her husband, along with their 3 beautiful boys, live in Layton, Utah.

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A friend of mine just found a school for autism for her children and made the following comment on FaceBook, “I feel like crying today... It was like coming home for the first time in 14 years.”

Miraculous

Something miraculous happened yesterday.  My 8 month old baby crawled over to me, sat down next to me, and for the first time in her cute short life held her chubby little arms up signaling she wanted me to pick her up.  I almost burst into tears. 

Now this might seem like no big deal, and to most moms it’s a cute milestone but they wouldn’t call it miraculous like I would.  But most moms didn’t spend hours of their first child’s life crying over this milestone like I did.  You see, Lexi didn’t hit this milestone until a few months after her 2^nd birthday.  Until then Lexi treated me the same as any random person.  It is hard to describe the knife that sliced right through my chest every time I watched Lexi treat complete strangers the same as she treated me – I wasn’t special.  Even thinking back to those days brings me to tears.

Raising autism awareness one cashier at a time

Last Friday I was incredibly bored and my girls desperately needed to get out of the house.  So I decided to take a quick trip to the nearest grocery store.  

First on my shopping list - diapers - the biggest size they carry.  As I picked up the girly pink 4-5T pull ups all I could think was "I really hope Lexi is potty trained before we have to special order these."  Next on my list - the controversial pacifiers.  I quickly grabbed a few cheap packages (much to Lexi's delight) and hurried away from the pacifier isle to collect the rest of my list.  

50 things you SHOULD NOT say to autism parents.

I wrote this post for two different people: autism parents, and the people we interact with. 

If you are an autism parent I hope you find community in this post.  I hope you laugh and cry knowing other autism parents hear these awful comments too. 

If you are not an autism parent, I hope this list gives you an idea of a few things you should not say to us.  I know most of you are not trying to be mean or hurtful with these comments.  Now, you need to know that we do welcome talking about autism.  In fact, we LOVE getting on our soap box and talking about autism.  Just be careful what you say.  We pour our blood, sweat and tears into autism.  So it can be a sensitive topic for us.  Because I know most of you want to be sensitive to our feelings I've also created a list of the 50 things you should say to autism parents.