Our Land – Am I a Special Needs Parent?

When I first found Sarah Almond, her blog name intimidated me. I figured she was way too smart to enjoy the drivels of me. I mean, come on. The Sadder but Wiser Girl? Whoa. Sadder AND Wiser? I felt like she had secrets to the universe that I didn’t. And, well, now that I know her better, I know that she does, in fact, have secrets to the universe, is married to an evil genius, and a whole bunch of other stuff about her and her family. I’m so glad that I do.  Sarah is not only brilliant, but she’s an amazing mom, blogger extraordinaire, and a cool woman all around. She’s got the most unique way of thinking, the best post titles and, well. She will surprise you, over and over. In the very best of ways.

Take her Our Land contribution, for example. She doesn’t often share what she’s sharing here. I won’t muck up her wonderfulness by saying anything else but welcome, Sarah, my friend, to today’s Our Land. And thank you.

Oh. Also, she has a thing about cats. And you know. Cats think they own the world and stuff.

Am I A Special Needs Parent?
by Sarah Almond

Being a parent is certainly the biggest joy of my life, but it also brings me the greatest worry.

I have been thinking quite a bit about a recent incident with my eight and a half year old son.  I had to take away his reading light.  He wasn’t staying up too late reading, or abusing his reading privileges, or anything like that.  He was literally in danger.  Most of the time when I write, it is humorous.  There is nothing humorous about what I am about to say.  I am not joking.

He had gone to bed as he usually does that night.  Every night, we let him read for about a half hour after bedtime. He knows that his light needs to be off no later than that, though occasionally he loses track of time and his mother doesn’t check on him for a while. That night though, I happened to be going by his room fairly soon after he had told all of us good night, and saw a light moving around all over the place on the walls.

“What are you doing?”  I called to him.

“Reading!” He hollered back.

Uh-huh, that obviously wasn’t the whole story.  I walked on into his room to see him waving his clip light by the cord up in his loft.

“Why are you waving your light around?”  I asked incredulously.

“Because it’s unclipped.” he replied.

“So clip it.”  I tell him.

“I don’t know how,” was his response.

Really? This is the kid who knows more about how complex machines work than most adults, yet he can’t clip a light back on.  So I climbed up into his loft to show him.  I am so glad I did.

If you read my blog, you are most likely aware that my son has some issues.  I mean, don’t we all?  He is ADD and has some behavior issues, as well as some things going on that we may never get diagnosed or fully understand.  One thing that has gotten to the point where it is more than just annoying is his oral fixation.  The kid chews on everything, from pillows to blankets to toys to library books.  He has ruined many shirts by chewing holes in the sleeves or in the chest.  Each year, we have to buy him multiple pairs of gloves because he chews holes in the fingers of them.  On more than one occasion, I have heard his little sister say to him “You can play with my stuffed animal, but please please PLEASE don’t chew on it!”

This particular evening, he had chewed almost completely through the cord on his light.  Yes, THE CORD!  The thing that electricity flows through!

I flipped out.

I spent a very long time trying to get him to understand why that was dangerous, and why he should never do it.  I know I raised my voice, I know I was on the verge of tears.  He looked at me blankly, nodding but at the same time looking like I was speaking some foreign language to him.  Then I took his light away, which upset him.  I felt so bad about it, because this is his thing, reading at night. But it had to be done.  He can read with the overhead light, and then turn it off when it’s time for bed. That’s fair, right?

My husband saw me walking out of his room with the light in my hand.  He gave me a quizzical look. I explained to him what had just happened.  He sighed, and bellowed for our son to come talk to him.  My son appeared quickly.  My husband then fired off several questions in rapid succession, to which my son answered with lightning speed:  “What is this?” “A cord.”  “What flows through this?”  “Electricity.”  “What happens when you come into contact with electricity?”  “You get electrocuted.”  “What happens when you get electrocuted?”  “You die.”  After a brief, but very clear discussion, he sent our son back to his room.

I am still not sure whether our son was able to apply that information to himself, or not.

This is one of those areas in which he can talk the talk but doesn’t walk the walk.  When he hits kids at school, he can tell you exactly what happened and why that isn’t ok, but it is like he is a spectator, rather than involved in the incident.  He doesn’t get that this applies to him.  This, too, was like that.  Just like when other kids don’t follow the rules and he thinks he is solving the problem, and breaks the rules himself.  Just like he doesn’t understand that all adults aren’t his friends.  He would literally go off anywhere with any adult or older child.  Yet, he is terrified of the house catching fire, or a tornado in the middle of the night, and sometimes doesn’t sleep because he’s worrying about those very things.

I worry about him all the time.

I worry about him getting teased and having no friends because of his behaviors.  I worry about him saying the wrong thing to the wrong kid and getting beat up, because he speaks whatever is in his head.  I worry about if he’s going to die when he gets his driver’s license because he’ll be so distracted.  I worry about him not finishing school because, although he has all of those brains in his head, he can’t focus enough to take a test.

Although he is gifted intellectually, he has some special needs.  His brain functions on another plane entirely from other people.  His issues are mainly social, from his tantrums and frustration to his lashing out at others, to his inability to relate to other children his age.  Thank goodness for his IEP, thank goodness for the teacher who he reports to multiple times a day for his behavior.  But, because I have anxiety, and ADD, and some other issues that I don’t fully understand about myself, I worry about what the heck will happen when they decide that he’s no longer on a behavior plan.  What happens when they turn him loose and he is left to deal with life at school on his own?

At home, we have spent years working on him being independent, on how to deal with things that don’t go just his way, on how to be tolerant and patient, on how to deal with spontaneity. Many of these things have now carried over into his plan at school.  Life is so much better than it was that first year of kindergarten when I spent the better part of the year trying to get him evaluated.  It wasn’t fair that he spent most of his time in the office.

I realize that I have not had to endure the stuff that so many parents of special needs children go through.  He has always slept well, he communicates well, for the most part the “H” is almost absent from his diagnosis.  Yet there is much that I deal with every day that I don’t necessarily share with many people.  The constant chewing on everything, the sensory issues, his questioning of every single thing, the arguing, the food aversions, his negativity, and the list goes on and on. He is a delightful child in so many ways, but I spend many evenings absolutely exhausted from dealing with him.

While I am the parent of a child that has special needs, am I really considered a special needs parent? How does one deserve the title? What does one need to endure on an hourly, daily, weekly, or monthly basis?  I wrote this partially as a way to put my feelings down on paper, but also because I’m curious.  What do other moms who have children who are high functioning but not necessarily “normal” children do?

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Um. Moms? Can you help me out here? Because I don’t know. I’d like to know, and Sarah would like to know. Plus, I told you that she’s amazing. Here’s a bit more about her:

Sarah Almond is a freelance writer and blogger living amongst the cornfields in Iowa.  She has two exceptional children and one husband who isn’t too shabby either.  You can find her randomness about motherhood, ADD, Anxiety, and shiny objects that distract her at The Sadder But Wiser Girl.