When Your Special Needs Child Looks Normal

posted in: Special Needs | 4

When Your Special Needs Child Looks Normal

When your special needs child looks normal.

Even Support Meetings Can Be Hard When Your Special Needs Child Looks “Normal”

At a recent support meeting for parents of special needs kids, I found myself wishing, not for the first time, that my son had a visible handicap. An odd wish, true, but that is my reality. People recognize physical handicaps. They can be seen on the surface and while people might not know much about the syndrome itself or the individual specifically, they automatically adjust their expectations.

A fellow mom of special needs kids once said to me, “There is nothing endearing about our children’s special needs. People don’t look at their behaviors with compassion or empathy”. And it’s all too true.

Special Needs Children Grow Up to Be Special Needs Adults

Our children with special needs are growing up. They aren’t so “cute”. What people tolerate in a preschooler is vastly different than what people tolerate in a high schooler.

Watching a teenager throw a chair, punch a hole in a wall, or slam a door so hard it comes off of its hinges does not inspire empathy in people. When your sweet baby or active toddler transforms into a teen, a shift takes place. A crying baby elicits sympathetic looks. A toddler throwing a tantrum? Sure, sure you might get a few dirty looks, but people can relate. A teen who refuses to leave a store because you won’t let him buy the video game he wants? A teen with a hoodie over his head (to block out sensory input), a scowl on his face, arms crossed (once again, due to sensory issues) refusing to cooperate? One look at my son in that state and you see rebellious, disrespectful teen.

Not an overstimulated kid with autism, overcome by paralyzing anxiety, and with the emotional age of a child half his chronological age.

Empathy Can Be Hard to Come By When Your Special Needs Child Looks “Normal”

My son looks perfectly “normal” and sometimes I think that is his biggest handicap. When people ask him questions, and he refuses to make eye contact or respond, he looks like he is ignoring them. He doesn’t understand the subtleties of social interactions which can leave him laughing at the wrong time. Glancing at a room full of people, you would not pick my son out of the crowd. Spend some time trying to interact with him, or see him on a bad day, and it’s a different story altogether.

My son’s issues are complicated. Even the experts aren’t sure how to help him. Every day is a struggle in our home. New challenges arise regularly. I don’t have a roadmap. There are no books to offer guidance for my son’s specific combined needs. Growing older simply means life gets harder.

For him, and for those who love him.

So here’s my advice, as a mom who’s kids with special needs look “normal”.

Always choose kindness.

Offer a smile, not judgment.

Say a prayer when you see a family struggling.

Remember, you never know what challenges other people face.

Please share if you know someone who would enjoy reading this.

You might also be interested in reading The Stigma of Hidden Special Needs.

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4 Responses

  1. Nanette Klinect

    Hi Renee,

    I started following your blog a couple of years ago. I forgot where I found it. I really don’t read many blogs but found too many similarities with your family and mine to not enjoy yours immensely. I have 11 kids, some bio, some adopted. I homeschool but also have sent some to public school. I have adult down to 13yrs. And we encourage mission trips for our kids.

    I also have a SN kid. She is 19yrs and is intellectually disabled. Even though she is 19, she is the size of a 10 to 12 yr old. That’s about her cognitive age as well except…..for tantrums, scowling face, talking about her period to random people in random places, tantrums, tantrums….did I mention tantrums because she doesn’t like how loud her brother breathes. Because she feels that she has been asked to do an extra chore. Because someone entered her room (she doesn’t share a room because I love myself enough to not have DFACS at my door because she has injured one of the other kids). Because we ran out of hot sauce. Because it’s her sister that died 4 years ago birthday and she doesn’t understand how to express grief appropriately.

    Some days she can be super sweet and very helpful. She hates a messy house so cleans mine. The flip side is if anyone makes a mess she goes ballistic. She also loves the family dog and has taught him a ton of tricks. She draws dog pictures for people she likes. And writes love notes to her dad and I. She is our daughter and we love her. But it is hard to be her mom some days.

    I wish I could give you a hug. Or a meal. Or just the reassurance that this is hard, holy work and that you are not alone.

  2. Panayiota

    Not that i am an expert or anything, but i know for a fact music is very helpful. Either a kind of music therapy for teens or music lessons with a specialized teacher or even a student or a fresh graduate that studies about music and people with disavilities.
    Also i have read that cancelling noise headphones are big help to people with sensory issues.
    I am praying for your family.

  3. Well said, Renee. I wish I had more to offer than that! But you have my understanding and sympathy (not the same as pity… ) Good words for all of us. We can’t see what’s going on under the surface. It IS hard work.

  4. I have two children with special needs: one has CP and drives a power wheelchair, the other has mental illnessess. If people (and the school system) gave to my child with MI 1/10 of the patience, accomodation and help they give to my child with CP, our lives would be completely different. People don’t get mental illness. She can’t control her behaviour, but she comes across as evil, manipulative and lazy. Even close friends and extended family members who know about her diagnosis and struggles need constant reminding of her limitations. The kid in the wheelchair gets all the breaks.
    Your son’s image must also be hurt by racism and prejudice against Black young men. My daugther is Black, too, and it does hurt her. On top of that, she is very tall and looks older than she is, when emotionally she in fact is a toddler.
    I have no wisdom to offer. (((HUGS)))
    Lucía

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