Monday, September 15, 2014

Who Would Want A Disabled Child? I Do.

I watched Dr. Phil's interview with Kelli Stapleton today.   I was not sure what to expect, honestly.  But.... I was definitely not expecting the colossal amount of victim blaming that happened.   Words like "broken" (in reference to Issy Stapleton), "mercy killing" and "loving mother" were tossed around as if Issy Stapleton did not have a life worth living and as if a loving, devoted mother would document a pattern of abuse and humiliation for the entire world to see.  As if a loving mother would methodically plan and carry out an attempted murder on her child.   What kind of society do we live in when children are demonized for not  having the tools they need to communicate, and mothers are held up as examples of loving and caring parents for the ultimate act of aggression on their child? 

One comment I heard, not on the show, but from an acquaintance was "Well, who would want a Disabled child?" 


I wanted a Disabled child.   

I wanted my child from the moment I knew he would be.   

I wanted my child from the second that I saw his beautiful, perfect face.
I wanted him when he wouldn't sleep for more than twenty minutes from birth due to undiagnosed (at the time) sensory processing disorder.   I wanted him when he cried and cried because he couldn't handle the overwhelming experience of noises and sounds and colors and touches in this world.   Oh, I was tired.  A lot.  But I wanted him.   

I wanted my Disabled child when he tore apart every newspaper in the house and silently put them back in order when he was 1.  I wanted him when he flapped and giggled with happiness at putting all of his cars in order from one end of the house to the other.  

I wanted him when he didn't talk and all the doctors were concerned and I first heard the word "Autism" whispered under their breath.   As he learned to sign and use picture cards, never saying a word....I wanted him then, too.   When he was frustrated, angry and scared because he could not communicate with words like his brain was trying so hard to do.....I wanted him.  

When we were told "your child will not fit in here" at our neighborhood school, I wanted him.   I saw his spark and his passion, when all they saw were "behaviors".  When they said "not normal", I saw "exceptional".  And not in an inspiration porn-y way, but in the way that his gifts, his strengths, they overwhelm me.  They fill me up and sometimes it's hard to look at him without tears because I just have so much love for this amazing and wonderful child.  I am so lucky, and he is so, so wanted.  

When his life is complicated, as Disabled lives can be, I wanted him.  I want him.  When the world is pushing us, I will stand with him and we will push back together.  Because I have never been so sure of anything as I am about the value, the beauty, the WORTH of his life.   He is wanted.  He will always be wanted.   

And this is my promise to my beautiful, Autistic, Disabled child:  You have always been wanted.  You will always be wanted.  I will want you when you are difficult, I will want you when you are "non-compliant", I will want you when you have an attitude with your mother, I will want you when you don't even think you want me.   My love for you is unconditional and there is nothing that will break that.  You have fundamentally changed my life for the better.  Sometimes, parenting you is hard, and that is because parenting is a humbling experience.  Parents don't know everything.  Even though we both carry the label of Autistic, I don't read your mind, and I recognize that you are your own separate person.  A person that I am so, so proud of.   A person who is growing and learning and changing every single day.   I am better for you having been born. This world is better for you having been born. 

To every Disabled person out there who is reading this, who have felt the burden of ableism and oppression because society thinks that the problem is who we are, and not the lies they believe about us.  To every single one of you who has felt unwanted, unloved because you are different, or your needs are more complex than people know how to understand.   Please know that you are wanted too.  You are needed.  I want you in this world because you make it better than it could ever possibly be without you. 


  1. Thank you for this. This says exactly how I feel, how I've always felt, about my little Mini V, who's not so little anymore! The love I feel for him, the pride I feel for him, the happiness at knowing him, fill me to near bursting when I look at him. How anyone can see anyone but a beautiful, happy, loving, excited, enthusiastic, affectionate, bright little boy, I can't, and don't want to, understand. I can't imagine my life without him being part of it.

  2. I am crying, because this is amazing and beautiful. Thank you for your words.

  3. I'm bawling my eyes out. But for good reasons.

  4. Beautiful. I wish I could put together the right words to express my gratitude for your post. Thank you for the positivity and clarity.

    Lori D

  5. What you have written was a turning point for me this a.m. in my relationship with my 36-year-old son who is high-functioning autistic. I read it to him and it meant so much to him. Thank you.

    1. That makes me so happy for you and your son. Thank you for sharing!

  6. I loved this! My daughter never slept more than 15 minutes at a time either!

  7. I grew up with a learning disability and grew up next to the classes for the developmentally disabled. When I was young we were put in the same category so I know what kind of children those with these kinds of disabilities are. A while back I wrote a blong about people with disabilities. I said I believe that the world would be a darker grimmer place without them, and I hold that belief.

  8. yes.yes.yes. Much LOVE to you, Lei. Thank you a thousand times over for this. <3

  9. I still think of this post and it truly gives words to how I feel about my son. Thank you for sharing your heart with us.

  10. My 11 y.o. boy had his name picked when I was his age, I wanted and loved him then and I want him and love him now even more.
    Thank you for this.
    A million times, thank you.

  11. Oh, how I said these words over and over to her and then backed them up with my actions so she would know just how much she IS and always has been wanted, treasured, LOVED! This was awesome!

  12. thank you for this I really need to that last part