Chasing Normal

Little Miss Adorable steals the show

There’ve been some excellent posts and discussion out there recently about comparing kids with Special Needs to typical peers and how a parent feels when their child isn’t even in the same ballpark as typical peers.

I really recommend you check out Stacey at More Than Word’s Am I Going to Keep Mourning What Isn’t?” and The Fragile X Files’sComparing Apples to Apples”.   Just go now, check them out quick and come back.  I’ll wait for you.

I’ve made some semi-intelligible comments on these posts using my phone (and renewing my hatred for Catcha anti-spam) but I feel the need to expand on this.

I may forget my anniversary, and Hubby may forget my birthday, but we always remember the dates we received our children’s diagnoses.  Time stands still in that horrifying moment/hour/eternity when the doctor turns to you and says, “I have a diagnosis for you.”

You remember it forever.

I won’t elaborate on how the neurology of such intense emotion makes such a memory so salient (think about where you were when you heard about 9/11 or any other major event), other than to say the details are etched in your mind.  Forever.

I will say that when people receive such traumatic news (and a big scary UNKNOWN about your child is very traumatic) they go through stages of acceptance/grieving.  The stages are: Denial, Anger, Bargaining, Depression, Acceptance. They may not go through all the stages, and may spend more time in one as opposed to another.  The stages may not always be clear, and yes, you can go back and forth.  (This is also called the Kübler-Ross model, thank you Wikipedia)

When I found out about my children’s diagnoses I flipped right to bargaining.  I accepted the Science, was in a complete state of shock, but believed in the power of Science.  Science can fix everything.  Medical care, treatment, therapy, intervention.  Yeah, right.

This led to a lot of trying to fix things.  Chasing therapies, interventions, special diets, supplements, and trying to be the best Special Needs kid out there.  My goal was ‘high functioning’ or bust.  This is really just bargaining – if I do this, that will happen.

I forgot what I was bargaining for.    

When Little Miss Adorable was an infant I watched anxiously every two months while her occupational therapist calculated the current percentile score that reflected Little Miss Adorable’s motor ability.  10th percentile, 5th percentile, 2nd percentile, then Little Miss Adorable fell off the chart.  I would record the score, report it to my pediatrician and feel smug because 4 percent of babies her age couldn’t do what she could.  She wasn’t the lowest, really.  I was fooling myself with Science and statistics.

And after a while it didn’t matter.

Sure, it would be great if Little Miss Adorable could hold herself in what I call ‘the baby seal position’ (lying on her stomach with her shoulders off the ground, like ‘cobra’ in yoga).  It would mean her core muscles are stronger.  She is now 2 ½ years old, cannot walk, and still can’t do this pose.  And frankly, I’m not sure I can either.

Little Miss Adorable does things that are so wonderful and different from anything anyone ever expected.  I never expected her to grow from being a rag-doll baby, floppy with severe hypotonia and a naso-gastric tube for feeding, to a busy toddler who bum-shuffles around and is nearly potty trained and is very excited about ‘big girl underwear’.

She can’t walk, but she can dance.  She can’t speak clearly, but she sure tells you what’s on her mind.  I expected that she would need fulltime, life-long care.  I never expected her to be a loving ‘Mommy’ and caregiver herself, devoted to her army of baby dolls and her little brother, giving diaper changes, bottles, blankets and pacifiers on demand.

I need to say, I am not anti-intervention.  I believe in helping people become the best they can be.  There is so much that can be done at this point in time that was impossible ten years ago – look at technology, medicine, science.  All have made great contributions to the lives of people with special needs.

In my son’s case, he has a longer life expectancy because of science and medical intervention.

But, we need to think about what we’re fighting for.

I’ve wrote before about how my family burned out chasing therapies – behaviour, OT, PT, SLP, add MDs and GPs – it became an alphabet soup of burn out. 

I remember one warm spring day when I refused to get the kids out of the van to play in a park for 20 minutes while we ate lunch because if I did, we’d be late for our next appointment.  The kids ate take out in the van with the windows down.  We looked at the park as we sat in the van, in the parking lot.

Yes, it was stupid.  Yes, I learned from it.  Yes, next time, I’ll call and cancel the damned appointment and lie, saying the baby just threw up.  Oops, we’re all sick, we cannot go

Now, get out the van and play in the grass, everyone.  Enjoy the sunshine, the laughter, and the swings

And stop chasing normalInstead, enjoy the laughter, the tears, the sunshine, the way your child’s skin looks in the sunlight, the way your child’s eyes light up when you push them on the swing.  Higher and higher.

This is what’s important – now.

But, I want to go back to my first comment, about comparisons and how a parent feels when their child isn’t even in the same ballpark as typical peers.

My advice to parents, that I wish someone had told me a long time ago:

Get out of that ballpark, and find something different and new, that you enjoy, together. 

xo Angela

For related articles in this blog, be sure to check out Life on Spec.





About Angela

Super-powered, Special Ed teacher and special needs mama to FOUR (!) children with an assortment of special needs; including Duchenne Muscular Dystrophy and Prader Willi Syndrome. Our family features a heavy dose of good ol' ADHD). I blog about our halfpastnormal life.
This entry was posted in disABILTY, Halfpastnormal is who we are, Parenting, Prenatal Testing and tagged , , , , . Bookmark the permalink.

2 Responses to Chasing Normal

  1. coyotetooth says:

    Now your singing a song I know ; )

  2. Stacey says:

    Great advice, Angela. For sure, I’ve found all kinds of things ‘different and new’ to enjoy with my son. And no, it doesn’t matter that he is not doing a lot of things boys his age are doing – he has a lot of other great things to offer instead. I still worry and wonder about his future though. But that’s a whole other blog post.

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