Sunday, November 29, 2015

Labels and Patience and Denial, Oh My!

Somewhere between 5-10% of American children have Sensory Processing Disorder (SPD).  Their intense reactions to sights, smells, sounds, etc. are so strong that normal daily living is disrupted.  Oftentimes therapists can help, but a good diagnosis comes first.
Patience is a virtue.  But sometimes, when we are in denial about an issue with our child's behavior or development, we hide behind phrases like, "Oh, it's just a stage," or "He's got a lot of quirks--I'm sure he'll grow out of them."  We wait and hope for the best.

Even when relatives, friends and teachers are voicing concerns we already may have in the back of our heads, we remain in denial.

Why?  Lots of reasons.  One I've heard many times is, "We don't want to label our child."  That's valid--there are some down sides to "labeling" a child, even if your label is a positive one, like "gifted."  But we need to balance pros and cons, constantly asking ourselves as parents and teachers if we are letting pride, laziness, or friendships get in the way of addressing problems.  And although you may not want to label your child, you'd better believe everyone else in his life--classmates and peers, siblings and grandparents, even the child himself--will label him!

There's a letter on the web going viral, written by a young man who wasn't diagnosed with Asperger's until he was 23.  In it he expressed his relief when he finally received a label.

Burying your head in the sand can take the form of refusing to acknowledge that a problem exists,  avoiding facts, and minimizing the consequences of a situation.  As parents and teachers, it's our job to get to the bottom of abnormal behavior that is disrupting normal development.  The sooner, the better.
Unfortunately, evaluations are not always as helpful as we would hope.  It's not like there's a genetic test for autism or SPD, and if our child is high-functioning, he may not qualify for services or classroom accommodations.  Still, in this article by a New York education evaluator the point becomes:  are you neglecting your child's needs by turning a blind eye?

"You aren't doing him any favors," is a phrase that comes to mind.  If a child had a broken arm or strep throat or pinworms, you would try to fix things right away. Otherwise, serious complications or lifelong  problems might result.  Likewise, don't ignore warning signs in behavior.

Finally, we should be honest about why we avoid evaluations.  Sometimes mother and father have opposite views on whether their child's behavior is normal.  It can cause so much tension that avoiding things altogether seems like the right thing to do.  But the reverse is often true:  when a child is finally diagnosed, oftentimes the parents feel relief and can finally be on the same page.

We should get the best professional help we can get, and even get a second opinion if need be.  These days it is SO easy to search online for things we can do with a child who has Asperger's or SPD or dyslexia or dysgraphia or……….the list goes on and on!  But what we need first is a good diagnosis.  And once we have that, we can look back on all of those years where well-meaning friends and teachers and relatives tried to help us and thank them for their concern.

Addendum:  Here is a great, short piece on acknowledging a problem and finding other avenues where, as she says, "different kinds of intelligence can bubble to the top."  This is not the same as ignoring advice; it's a way to encourage strengths to come out while working on weak areas.

6 comments:

  1. If only parents could trust their child's teacher more...

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  2. My three children have a mix of dyslexia, dysgraphia, CAPD, language impairments and ADHD. Getting a good diagnosis and explaining the diagnosis is crucial so that children don't internalize the struggles they are experiencing as being stupid or if only I worked harder. Children struggling need proper support whether it's an OG tutor for dyslexia an OT for dysgraphia, and audiologist for CAPD or counseling and medication for ADHD etc. It bothers me greatly when I see parents turn a blind eye to their child's struggles. As a former teacher and now a tutor, if a teacher says she/he has concerns about your child you should take that information very seriously, especially if it's not the first time you've had feedback about your child.

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  3. There *is* actually genetic testing for autism, at least, for known genetic changes linked to autism and other developmental delays. This is what we're undergoing right now. As part of this testing, the doctor found physical genetic markers no one had ever noticed, for example, a single transverse palmar crease (for example, 100% of children with Downs Syndrome have this) and two fingers without a second joint. This gives us a clue that what we are looking at is objectively something different than emotional temperament or behavioral issues. I hope we get more clues because more information leads to the right help! If we had gone down the psychological route of treatment alone, or dismissed the problems as emotional, we could have missed this chance to understand our child. Say a prayer for us because the waiting for results is hard!

    M

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    1. Thank you very much for that information--I had no idea! Yes, I will pray for you. God bless!

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    2. Is this the type of test to which you are referring? http://www.cbsnews.com/news/genetic-tests-offer-new-clues-to-autism/

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    3. Yes, and he will have another round of more specific testing in May (the doctor compares microarray to word count --extra or missing pieces-- while the FISH analysis to come is more like spell check). Not every genetic change linked to autism or ADHD is known, but some are definitely linked to neurological disorders.

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