Your child has a developmental handicap and perhaps mental illness. Do you wish he was “normal”?

by Donna Kirk on March 3, 2013

I’ve often heard the question “Do you wish your child was normal?” being asked of parents whose children have varying degrees of disability. I’ve never heard any parent answer yes.

They  love their children for who they are and wouldn’t change a thing. For years, I heartily agreed with this answer. Then, I decided I could be more honest, still love and value my son, Matthew, and be a better advocate for him.

As our three children were growing up, his struggles were in such contrast to the life experiences of his two “normal” siblings. I wished every day that Matthew could have an easier life. I wished for better physical and mental wellness for my son. I wished he could talk. To go on saying I wouldn’t change a thing was utterly irrational.

But I know why I hid my honesty for so long. I didn’t want people to think I didn’t love my son. I didn’t want people to think I would trade him in an instant for a more socially acceptable version. I decided to stop worrying about what other people thought about kids like Matthew, and what they thought of me as a parent. My job was to make the best life possible for him.

After he died, I decided to publish Finding Matthew and make it a comprehensive and engaging account of my son’s life and accomplishments.

My goal now is to encourage people to read the book and wish they’d met Matthew.


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{ 5 comments… read them below or add one }

Crystal March 3, 2013 at 8:01 pm

Your love and devotion to Matthew will never be questioned. It is evident and any parent would want the best for their child. Your honesty is admirable and everyone, whether faced with family members who have a disability or suffer from a mental illness will relate and feel better in knowing they are not alone. Well said and great post!

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Joe March 4, 2013 at 10:15 am

I have always hated 2 words, retarded and normal. The first for obvious reasons but the word normal, when you think about it, is really just a socially acceptable term for exclusion. I loved Matthew for who he was, I am so glad he was not ‘normal’.

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Michelle Sim March 4, 2013 at 10:17 am

Oh Donna! How beautiful…
When we met, oh, about 40 years ago now and my Paul was struggling and we didn’t know what to do, you had a huge impact on my life. Your ability to laugh, to be honest, to say how you felt, really helped me when ‘in secret’ I so wished my little man was ‘normal’. You gave me strength to BELIEVE that even though things weren’t perfect, I could still have ‘family’; I could become my whole self; I could have marriage, etc.
Having read Finding Matthew, further led me to know that to be anything but honest and open regarding the very real struggles, fears, disappointments and failures, would be a huge disservice to our sons’ already challenging lives. I know with me, Paul forced me to become better than I ever imagined I could be. I owe him my life!
Michelle

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Kelley March 4, 2013 at 11:46 am

I couldn’t have asked for better parents or a better experience growing up with Matt.

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Karen Neill March 4, 2013 at 12:20 pm

Kelley, I only knew you peripherally as a child- through Kindergarten, and at birthday parties once a year? I didn’t know you had a brother who had a disability. It’s been lovely to get to ‘meet’ you again as an adult, and to learn about your fantastic brother. I’m on sick leave now (as I’m sure you know), but my life’s work is to work with kids who are like Matthew- unable to speak. (I’m and AAC SLP). It’s amazing how much things have changed in our lifetime- if Matthew were a student now, he’d have a communication device, or even a iPad with one of the many AAC apps that are available (and new ones every day!). Just in the last few years even AAC has become so much more prevalent- last week there was a Kindergarten student using an AAC device to talk to the president! When they start young, what an amazing thing it can be. I’m so enjoying this blog- this entry in particular. I have parents often say to me “Now, don’t get me wrong, I wouldn’t change a thing about —-, but I just wish he could xxxx” I’ve always suspected that what they were really saying is “I love —- as he is, and don’t ever forget it!”. Now I know that for sure :-).

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