Autistic kids, other parents, and divine appointments

Grant.  What a unique kid.

I’m considering getting him re-evaluated this summer, as it’s been a couple of years since we’ve regularly seen his developmental pediatrician.  When he was four, he was diagnosed Nonverbal Learning Disorder, which, according to the developmental pediatrician, even though it is not classified as such in the DSM-IV, is considered by most “experts” to be on the autism spectrum, as a high-functioning autism.  (NLD is very much akin to Asperger’s, only without the fixations/obsessions, but with fine and gross motor skill problems.)

One of the questions that the doc always asks is about whether or not Grant’s behavior interrupts family life.  I never know how to answer that.  The way I see it, for better or worse, Grant’s behavior is part of our family’s life!  Still, on days when he’s not present, like today, when he spent the night at a friend’s house, our home is markedly more peaceful.

Grant is… inflexible, and his focus is nearly always* on himself, so there tends to be an  uproar when he enters a room in which other people are doing things that aren’t Grant’s idea;  he wants all games to those of his choosing, with his own “special” rules that favor himself;  he wants all TV shows to be of his favorites;  when something happens that has even a slightly negative impact on himself, he’s sure that the offender purposefully set out to harm him;  people have private conversations and he inserts himself in the middle, sure that either a) the conversation is about him, or b) he has something of value to contribute…  His reactions to situations that aren’t to his liking are generally of the “fit” variety, more suited to a preschooler than to an intelligent young man of nearly 11 years — lots of noise, tears, lashing out verbally, accusations, stomping around, scowling, arguing, etc.

So, yes, all of that is disruptive, but it’s not like it’s out-of-place in our home;  we’re used to it**.  And, I rarely feel unequipped to deal with him, so it’s not like it’s a problem.

So, from the “we’re used to it” mindset, I typically don’t proceed through my day being really aware of the things about him that are different from most other kids.

A couple of interactions happened,  recently, though…  Grant wasn’t even present on either occasion, but in both events, I was struck with the realization that, yes, Grant does have autistic tendencies.

  1. A couple of weeks ago, during the last game of my oldest son Ethan’s Little League tournament, 19 month-old Fiala was restless, so I had brought her to the grassy slope beyond the outfield.  She was tootling around, picking up leaves and finding bits of paper, and trying her skill at running down the small hill without falling down.  A boy, about ten years old, was playing alone nearby.  Watching him, active, yet completely self-involved and seemingly unaware of even the existence of others, I thought to myself, “He’s autistic.”  Eventually, Fiala approached the boy, with her typical friendliness and curiosity.  He was standing upslope from her, and I observed the two of them, wondering if Fi would be able to “break into” his world.  He stopped, and eyed her.  Immediately, I thought, “He’s going to push her.”  Now, the slope was literally about three feet high, and not steep, and I could tell from the boy’s body language that he wasn’t violent, so I wasn’t really worried about her.  Yet, as I considered the boy, knowing Grant’s history, I could just tell that he was thinking, “I will push her.”  Autistic kids really have a lot of investigative curiosity of the poking and prodding variety, gathering information, but not really trying to discern the “why” of anything;  they have virtually no ability to judge — or even consider judging — the cause-and-effect of a situation.  I was about fifteen feet away, and started walking slowly towards the children.  Sure enough, the boy reached his hand towards Fiala’s head.  At that point, I heard a dad holler, “Colton, NO!!” and out of the corner of my eye, saw the father hoofing it towards his son.  Colton glanced up, and as he sped up his actions, I could tell he was thinking, “I’d better push her now, before my dad gets here to stop me.”  The dad swooped in quickly, and was able to deflect most of the push, so that Fiala just sort of plopped back on her rear, and rolled off to the side a bit, completely unharmed.  The father was almost frantic in both his apologies to me, and in his anger towards his son.  He explained that his son was autistic and didn’t really understand what he was doing.  I soothingly assured him that I was not upset at all;  that I had anticipated his son’s actions, as I have an autistic son, too.  Once the father could tell that I was truly not angry, he was visibly relieved.  We chatted, the father and I, for a while after that, about our boys.  There was quite a remarkable similarity in some of the stories.  In other aspects, though, there was not so much.  He said his son has “anger issues” and his wife cannot control him, and that they have him at a special year-round school.  He couldn’t believe we homeschool, couldn’t envision himself around his own son for that much of every day.  “But, we bring him everywhere with us;  we can’t just stay at home all our lives.”  He said this, as though resigned to the fact that they have this troublesome fifth wheel, of which they found themselves the owner, and that they were just doing their best to go on living a normal life, in spite of the encumbrance.   I found myself observing that though Colton’s autism did appear more severe than Grant’s, I wondered if the boy’s situation might be improved with a different approach by his family***.  The father had a lot of anger and a very high level of frustration, and it was a caution to me, regarding my attitude toward my own son.
  2. Earlier this week, I went to FedEx Office (which I still call Kinko’s — it used to be Kinko’s, the it was FedEx/Kinko’s).  I bought some binder clips and envelopes, but really, I was there to use the paper cutter, as I had already made my copies at home.  🙂  There were two paper cutters, but one was out of commission.  It, however, appeared to be the more high-quality paper-cutter of the two, and I thought that if the rolling cutter could just be put back on track, it would be the better of the two.  So, I inspected it for a bit, struggled with it for a bit, figured it out a bit, then was able to (with the help of the side of a pen) pop the roller back in its track.  In the midst of my struggles, another woman came up to do her own cutting.  We chatted idly, and then with increasing involvement, especially as it became apparent that the cutting wheel of the now-fixed simple machine was in desperate need of sharpening, and while it was semi-effective, it rather chewed up the edges of the paper than cleanly cutting them, and really wouldn’t suit either of us.  So, two women, both with about 150 pages to trim were in need of the same cutter.  We worked together, taking turns — me cutting while she arranged her papers, and vice versa.  The machine would only handle five sheets at a time, so we were there for quite a while.  As we worked, somehow, we got to talking about our kids, as mothers often do.  It started with a discussion about gymnastics, as she had shirt on with the logo of a gym, and mentioned that she coached.  I have thought about putting Audrey into gymnastics, and we talked about that.  Somehow, one of us brought up the similarities between the benefits of gymnastics, and the benefits of occupational therapy, I mentioned that one of my sons had done OT for about four years…  From there, the conversation led to the fact that we both have an autistic son, and we both homeschool, and we both go to the same group of developmental pediatricians, though she sees a different doctor than we do.  It was apparent that her son’s situation was much more severe than Grant’s — her son has both Asperger’s and Tourette’s.  But, again, there was enough similarity between the two of them that we were laughing together and relating with each other’s stories.  Then, her 12yo daughter came in;  apparently, she had been in their vehicle talking on the phone.   “Does your son do _____ ?” she asked, naming a behavior that I knew all too well.  Or, I’d relate an experience, and the mom and daughter would look at each other and bust up laughing, saying, “My son/brother does the same thing, too!”  It was actually a very refreshing conversation, and the other mother and myself decided that our meeting by the paper cutters had been a divine intervention, set up by God to encourage our hearts.  We hugged, and I left.  I have her name in my head…  I still wonder if I should have gotten her phone number…  But, I know the church that she attends now, and she’s the youth group leader, so I think I could track her down.  🙂

So.  I’m not sure what to do with those.  So far, I’ve simply pondered.  For the entirety of Grant’s life, and particularly since his diagnosis, which gave me a GREAT deal of insight into his mind and heart, I have tried to find the right balance in how to mother him:  keeping his difficulties/inabilities in mind, yet not just excusing/catering to them, nor blaming all of his troubles on the disorder.  On one hand, if you expect your child to be totally normal (“neurotypical”), you’ll end up with a great deal of anger and frustration as a parent, because the child just isn’t and it’s detrimental to everyone, in my opinion, to have unreasonable expectations — like a false-positive reality…  On the other hand, though, if you just blame every problem on the disorder, you end up feeling powerless, like the child is hopeless, and destined to a life of… well, a life of something really negative, so you’d better just both brace and resign yourself.  I don’t want to do/be either, but I do find it very challenging to find the right balance.

Overall, though, I find myself encouraged, and hopeful for Grant’s future.  I feel like we’re on the right track.  I feel like God is confirming to me, “You’re the right mother for him.  Martin is the right father.  I’m giving you hope.  I’m setting you up to encourage you.  I’m offering a bit of warning along the way.  I’m giving you insight into the child I created…”

——————

*His focus used to be totally on himself, so even a 5% improvement in that area is vast, in my opinion.

**”Used to it” doesn’t mean it’s OK;  we still correct, teach, guide, and discipline as needed, often multiple times per day on the same item — the same item that we’ve gone over multiple times per day for virtually every day for his entire life, but we’re not giving up.

***”Different approach” not necessarily referring to homeschooling — I don’t think that homeschooling is right for every child, though many autistic children flourish in homeschooling.  I guess I mean fully accepting him as a viable, integral part of their family — it’s more in the attitude.

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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 June 19, 2010, in Character Development, Christian Living, Encouragement, Family, Homeschooling, Medical Stuff, Motherhood, Nonverbal Learning Disorder, Parenting, The Kids. Bookmark the permalink. 3 Comments.

  1. Not only was this a really insightful look into your family’s life and your parenting ideals, but I have to say that I love your writing style. 🙂

    (Seriously, I write screenplays with mini-monologues here and there, and I want your style ASAP.)

    I also think it’s great that, just by being you, you manage to find people who are walking down a similar path, and you make the most of those opportunities to encourage and support.

    I don’t know what it’s like to deal with a family member or loved one with Asperger’s or Autism, but I can’t imagine any child truly flourishing or having a shot at succeeding in life, if they don’t have parents and sibling who approach trials with the right attitude.

    Kudos to you guys for keeping it all in perspective, and taking it all in stride!

    – Cassie

    • Precious Cassie. I do love you. I wish I would have seen this comment you made, before I saw you at church!!! Thank you for your encouragement & kind words. You remain one of my favorite people EVER. (I think I’ve told you this before, but before I had any girls, I would tell your mom, “If I have any girls, I hope they grow up to be just like Cassie.”)

  2. Thank you so much for sharing these thoughts. You really helped me to step back and evaluate my own parenting of my autistic son. It is sometimes so hard to keep the balance between not focusing on the differences and difficulties, and on the other hand focusing on them too much. I can tell I’m going to be thinking about this for the rest of the day!

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