The wisdom (or not) of revisiting hard times

Grant went grocery shopping with me last night.  As far as shopping company goes, I actually prefer my oldest son, Ethan.  We chat, catch up on things, laugh, and generally enjoy each other’s company.  But, Ethan is also valuable at home, and most often, my hubby prefers Ethan to stay and help out when I go on errands, and I don’t blame him.  I’ve told Ethan that when he eventually gets a job for himself, he’ll likely think, “This is a BREEZE!” because we work him so hard.  I felt (maybe still do feel) a little badly about that, until talking with a dear friend from church — a man in his late 60s — who praised this approach;  he’s a fan of teaching boys to WORK, and was convinced we are doing Ethan a great service.  That made me feel much better.

Anyways.

At one point, something occurred when shopping with Grant.  I had the cart headed in one direction, and for one reason or another, decided to reverse course 180 degrees.  Grant saw what my intentions were, and moved himself out of the way to allow me to move, on his own, without me prodding him verbally or on the arm or in any other way.  That may not sound like a big deal — but him anticipating the event, being aware of what I was trying to do, being aware of his need to move out of the way… that was all MAJOR to me.  Huge deal.  Huge growth.  Huge maturity.

I came home very encouraged.

Late last night, I was catching up a bit on blog reading, and came upon this honest and meaty post from Laura at LaFianzoo.  It brought me back to little-bittyhood with Grant, who is now 10.  Laura talked about her 5yo daughter, who has sensory processing disorder, or SPD, and who screamed for pretty much years at pretty much anything and everything, and who still has significant struggles.  Opposite of Laura’s concerns, I knew something was wrong with Grant because he was lump-on-a-log for his whole first year, almost completely non-responsive.  He didn’t cry when he was hungry, even.  He did stare out at the world, seeming to take it all in, but he was very much in his own world.  He did have some major sensory processing problems, and ended up being diagnosed with something called nonverbal learning disorder.

NLD is difficult to explain — basically he was not processing correctly anything that was NOT verbal — if it wasn’t WORDS, he wasn’t getting it, and you’d be AMAZED at how much you learn and communicate nonverbally until you’re face to face with a child who cannot nonverbally communicate at all, nor understand others’ nonverbal communication.  NLD also affects/affected his motor skills both fine and gross.  Though it’s not “officially” classified as such, our developmental pediatrician considers NLD to be a form of high-functioning autism, very similar to Asperger’s Syndrome (but with more motor problems and less-intense fixations).

Grant was 4yo when we got that diagnosis.  Previously, I had been one of those parents who used to say that I hate labels because I didn’t want my kid put in a “box”.  However, after Grant’s dx, I TOTALLY changed my mind.  Having a name for NLD gave me a window into the heart and mind of a child who was totally unknowable, and who (literally) did not know that I loved him, who would stiffen up when I tried to hug him.  Additionally, it helped me understand why he was bruised from head to toe.  Understanding the process of cause and effect comes from NONVERBAL learning.  Grant would just walk into things instead of around them.  Even BASIC cause-and-effect like, “If I put out my arms, it will break my fall, and I will be less-injured” was beyond him.  He also had sensory processing difficulties;  among other things, he went through quadruple the clothes that everyone else did, because if he got a spot of water on it, it came off and he’d put on new clothes…

BUT, in some ways he was brilliant — taught himself to read at age 3yr 2mo, and no one could believe he has a learning DISORDER, so even to this day I’ve told very few people, because they just don’t understand, and it’s too hard to explain briefly.

Reading Laura’s post brought me back to the most difficult of times with Grant.  In some ways, that was a really good thing, because I can recognize how far he’s come, and how much I’ve learned as Grant’s mother.  It reminded me that GOD KNOWS that Grant needs my husband Martin and me;  Grant was created for our family.  I was also reminded that all the things I’m sowing into him now WILL BEAR FRUIT.

We have probably 75% fewer problems with Grant than we used to.  Maybe 80%.  I still get caught in moments of despair over him and fear for his future.  In a number of ways, he has less maturity than my 3yo.  There are still things about him that bring myself and my husband to great frustration.  HOWEVER, there are also many times when Grant seems 98% normal (“neuro-typical”) and I can totally see the light at the end of the tunnel, like that five-second Episode of Hope at the grocery store last night.

Still, reading Laura’s story also reminded me of some tough things:  I still lack joy in being Grant’s mother 95% of the time.  It’s still a challenge for me to appreciate him; it’s not spontaneous in my heart like it is for my other kids — I have to remind myself to appreciate his good qualities, I have to remind myself to hug him, I have to remind myself to tell him kind things and tell him I love him — because there is such a hard history (and very often a hard day-to-day) with him.

BUT, I am still convinced that he is a supernaturally, God-gifted, amazing child who will be an amazing man of God and do something fabulous that this world hasn’t seen before — he’s so outside the box, and the world needs people like that, even if it’s hard on their mother’s heart.

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About Karen Joy

I'm a partially-homeschooling mother of six -- 3 boys ages 19, 17 and 15 years old, and three girls: 11, 8, and 3. I like birding, reading, writing, organic gardening, singing, playing guitar, hiking, the outdoors, and books. I very casually lead a very large group of homeschooling families in the Phoenix area. I have a dear hubby who designs homes for a local home builder and who is the worship pastor of our church. I live in the desert, which I used to hate, but now appreciate.

Posted on December 2, 2009, in Babies, Character Development, Encouragement, Family, Motherhood, Nonverbal Learning Disorder, Parenting, The Kids. Bookmark the permalink. 8 Comments.

  1. 🙂 I’m glad you posted this

  2. I have two boys who were diagnosed with regressive autism after vaccinations (a whole different post). It appears that they have a mito disorder too, but again, another post.

    Anyway, reading about your son makes me think about my children. Seven years ago I put them on GFCF diet and the changes were nothing short of miraculous. Since then my dh has had a questionable celiac blood test followed by a ‘normal’ scope. A year ago I convinced him that we should all go on the diet and the changes in us have been amazing too. Our old ped g.i. told me that she thinks that perhaps our family has a mutated form of celiac and they believe there are dozens of different mutations.

    We still have some day to day struggles, but it is so much easier now. Homeschooling has helped me to keep my children on track while socializing them with the children I choose. It also has allowed us to build a deeper relationship.

    I really appreciated your sharing.

    • Betsy, have you posted about your boys’ dx?

      I’m not worried that Grant’s is related to vaccinations; he showed symptoms from pretty much day one — we could look back and say, “OK, THAT’S what that was.” Him never crying to be fed — ever — was a huge red flag. He didn’t cry to be changed, either. He never put two and two together about the squeaky wheel being the one that gets the grease…

      We did have him GFCF for about a year, with minimal improvement. We’ve since sort of experimented, and while we can’t tell ANY difference in his behavior when he’s on gluten, oddly enough, dairy makes enough of a difference that he’s back to being dairy-free. On dairy, he does what I call “buzzing.” He’s so amped up that his eyes almost buzz. Hard to explain. It’s like he’s vibrating. His focus on tasks and his eye contact also suffer when he’s on dairy.

      He has never been tested for celiac disease! Crazy. I need to get that done. I would be surprised, though, if he tested positive.

  3. Ah Karen, my heart goes out to you 😦

  4. newbeginnings09

    Karen,
    As usual, your writings leave me with a smile and a touching down deep, knowing that I do not travel this world alone in my ideas. I sat on my couch today and wondered what in the world to do with my SPD child, who has kicked ANOTHER hole into a wall in my home. At least I know that I am not alone in my sheer exhaustion and daily need to remind myself that he can’t help it, and I have to praise too.
    On a completely separate note, I want to know how you found your church? We’re struggling here, not really finding anywhere we fit in. I love how you LOVE your church!

  5. Once again you remind me that I’m not alone!!!! I love my Little Critter so much… but sometimes I struggle with the daily reminders of that love… we have so many difficult times (like today… all day… and yesterday… and all weekend). It is easy to get consumed by the difficulty in parenting these amazing children and forget to encourage all the positive!

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