Desperately Seeking Child Interpreter, Stat!

I’ve always been sort of a character.

Ugh!  I think the honeymoon may be over.  I have to get this off of my chest, so I apologize in advance for this post.

It’s just like a lightbulb burned out up there all of a sudden.  Maybe a connection went bad.  Maybe some brainwaves got scrambled up there.  Yes, second grade was going pretty well.  Now it’s not.

I talk about Princess Difficult quite often, because she’s home most of the time and she is a constant source of funny blog material.  The Professor, AKA my son and her brother, also lives in our house.  He is just harder to write about than she is.  He is one unique individual.  He is so unique that I just don’t understand him.  I fully expect the parent-child disconnect on some level because he is a boy and I grew up with one sister and mostly girl cousins around me.  He lives in his own world.  There has to be some sort of barrier around him because it seems that most of the information that gets through is garbled.  He can repeat back to you what you just said to him, but most of the time it’s like it went directly from his ear to his mouth without stopping to be processed.

The Professor is ADD and also has some major sensory issues and other as of yet to be explained things going on there.  Kindergarten was an absolute nightmare.  At the end of his kindergarten year he finally was evaluated and was put on an IEP.  An IEP for anyone who is not familiar with such things is short for an Individualized Education Plan.  His particular one focuses on his ADD and his behaviors.  My son has Attention Deficit Disorder so badly that he doesn’t exist on the same plane as the rest of us.

It all went down like this:  We went to the doctor’s office, the doctor asked 5,000 questions that we had already answered on the form we had to fill out. Then he shooed me out and my son a test on a computer.  Afterwards I was called back in, and what I got from the doctor was that he could be ADD, and that my next step was to consult with our pediatrician.  I left the office feeling like I had just wasted my time and a sick day taking him in.  Fabulous.

Then we went to the pediatrician.  She has been his doctor since infancy, and she has had some pretty unique experiences with him.  He was hospitalized for a week for dehydration from a horrible stomach virus the previous year.  She just happened to be the doctor on call.  She’s one of those rare doctors that will call you at home to ask you a question when reading over his records.  She’s awesome.

I wasn’t prepared for what happened next.  We went into the examining room, and she said that the report that came from the evaluation they performed said that he was off the charts ADD, needed to be medicated, and may need an one on one associate because his behaviors were so severe.  HUH?  She seemed surprised that I was surprised.  Did I miss something here?  Did she consult with the wrong doctor?  Oh, and he was possibly on the spectrum, but we would have to do much more testing.  This wasn’t going to happen, because our insurance would only foot the bill for the one test.

The ADD and Asperger’s possibility, not surprising.  Everything else, yes.

After much discussion, we chose to not medicate him.  I took the prescription but never filled it.  We went on to the school meeting the following week.  I don’t think they were thrilled, but understood why we chose not to put him on medication.  They created an IEP for him with a plan that included working on following directions, behavior modification strategies, etc.  He is in the regular classroom, but makes frequent visits to the resource room to work with that teacher on his behavior.  He receives a sheet every day outlining his behavior and whether he was able to follow directions.

First grade started out great, then went downhill as the year went on.  Still much better than kindergarten though.  Now we’re into second grade.  Same poop, different grade.

He is a GREAT kid.  He’s cute as can be.  He is super intelligent, reads well above grade level, loves science and math.  He’s bright, and curious, and inquisitive.  He’s funny.  Anymore he’s a fairly good brother to his little sister, which is good because he needs to work on his tolerance of other kids.  I’m happy when other people compliment me on what a fun kid he is, because I don’t think very many people at school necessarily get to see that side of him.

He and his sister don’t always see eye to eye, but I think they have developed an understanding. She knows that he’ll do whatever she tells him to do!

Some of the not so great stuff I understand about.  I understand that it’s hard to pay attention when there’s something much more interesting OVER THERE IN THAT CORNER, and then over there on the wall, and then over there on the floor because I am also ADD.  I get the sensory issues, like using lotion really grosses me out sometimes.  I understand the food issues, because there is a lot of stuff that I would rather starve than eat (granted I’ve gotten better than that over the years).  I get the anxiety, like being scared of tornadoes and not wanting an alarm of any sort in the bedroom because you can’t take loud noises (I have to wake to nature sounds).  I understand the panicked feeling when the routine is disrupted, or things don’t go according to plan because I am the same way.  I understand the isolation and the problem relating to other kids his age, because I also have fabulous social skills (I’m being sarcastic).  I have a hard time with the constant repeating of certain things, and him whispering things to himself like a little echo but I can deal with that.  Sometimes it’s gets very wearing on me when he is stuck on something he really likes, and I get to hear about it 99% of the day, like Lego Star Wars or Super Mario Brothers, but I’m happy that he has interests and tries to find out all that he can about them.

What I don’t get is the ups and downs and how he can have so many fabulous weeks and then everything goes in the crapper.  When other kids try to be friendly with him, he does something inappropriate like hitting or yelling at them because he thinks they are “bothering him.”  And how he overreacts to everything.  Or when he outright refuses to do his work in the classroom.  And when he has his meltdowns.  Or does stuff that makes no sense like the relentless chewing on anything he can find, like shirts, stuffed animals, and electrical cords.  Yes you saw that right, he even chews on those.

He can tell you exactly what was wrong with what he did, but he can’t apply it to himself.  He’s still angry with me for taking away his lamp.  Even though he can tell you that there is electricity going through it and that someone who comes into contact with it will be electrocuted and die, he doesn’t understand why his mean mom had to take away the lamp.  He loses control and hits or pushes another kid, and he can tell you why it happened and what he should have done, but is more upset about getting in trouble than he is about the fact that he hurt his friend.

What we have here is a failure to communicate.  Or understand.  It’s like I’m talking to him in a different language, and he can parrot what I said back to me, but he doesn’t actually understand what I am saying.  Something isn’t connecting.  I think I need an interpreter, or maybe one of those universal translators like they use on Star Trek.  Nothing else seems to work.  No amount of rewards for good behavior, or punishment for bad behavior, or plans at home seem to get through.  We can take away everything that is fun to him, like video games and TV, and it doesn’t really seem to matter.  Some months a good week is one where he doesn’t visit the principal’s office at all.

If it’s anything like last year, this will continue for awhile, and then suddenly get better.  Then there will be a period where it gets way worse.  It’s maddening.  I’m surprised I don’t have any gray hairs yet.  I feel like apologizing over and over to his teacher for having to do so much work when it comes to my kid.  I feel like I should apologize to my husband for having this to deal with when he’s been at work for 10 hours that day.  I feel like I should apologize to him, for failing him as a parent. I feel like I should apologize to the readers of this post, because no matter how hard I tried I couldn’t put a funny spin on it.

I don’t feel like I have really earned the label of special needs parent, because I know what parents of children that I worked with in special education have gone through.  He is relatively easy outside of this.  He has always slept well, a little too well in some respects.  He spends most of his time at home with his nose buried in a book, or rolling around on the couch, which is a little annoying but otherwise harmless.

I love my son to pieces, but having these issues makes it so hard to be a parent.  Do you have a child who has issues in school?  On an IEP?  Does your kid have trouble relating to anyone his or her age?  How do you deal?

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8 thoughts on “Desperately Seeking Child Interpreter, Stat!

  1. I’m no expert, but I can tell you what I learned. You frequently can’t get the whole story from the school system, as they work on their own scale of “minimum requirements” and have their own agenda. Your Pediatrician, though you may love her, is not the right resource in this instance. The resources in your area may well be plugged into the local school system’s scale, not helpful either. I researched, went 1500 miles away, and had a full impartial neuro-psych work-up done. School doesn’t “choose to acknowledge” sensory issues or grey areas on the spectrum, but knowledge is power. I could support and assist and train on my own. So glad I did it.

    • That’s good advice! Thank you. It’s been a matter of resources and money. I do a lot of reading since I haven’t really been able to afford anything else!

      I’ve had lots of advice on the Aepergers forums to try homeschooling too. I guess if it comes down to that, but I’m not sure I feel comfortable doing that-I think he is better off with someone who is not Mom. We’ve had some things come up that I have decided to not bring up on my blog that I’ve shared anonymously.

  2. I have so much to say on this topic, it’s crazy! I think you know, my son, Joshua, is 8 years old. Let me just tell you, you are NOT alone!! I’m going to jump around as I think of things, so bear with me. From the time he was 3 or 4 I knew he was different. I have 3 sisters and then our first child was a girl, so I had NO idea what to expect with a boy! He was/is sweet as can be, friendly, and TALKATIVE but he has never known boundaries socially the way I see other children do (and how our daughter did/does), so I have always wondered what was different. He dominates conversations – all the info is about himself; what HE likes, what HE is doing, etc and only recently has he started being more give-and-take. He was a strict routine/pattern keeper until he was 5 years or so; so much so that I researched autism/asperger’s. Lots of things matched, but others didn’t at all. I was against doing the doctor research/labeling thing, because we wouldn’t be medicating him unless there were behaviors that were a threat or danger (which there weren’t), so that just leaves you with a label.

    We were already homeschooling our daughter, so it was natural for Joshua to do the same. I can tell you one thing for SURE: if he were to have been in school when he was 4, 5, or 6 he would have DEFINITELY been labeled either ADD/ADHD, and gotten into trouble routinely for not following directions, not finishing work,etc! As homeschoolers, it looked more like this: short bursts of educational activities like phonics (10-15 minutes), play and run around the livingroom with nerf guns, spend time outside, roll around on a ball while I read to him, let him watch educational dvds (like Popular Mechanics For Kids), hold squishy, bumpy, or otherwise stimulating things when having to wait for something, play at parks, teach him soccer, baseball, football to get energy out with focus, teach him to sew by hand so he could sit still, and the list goes on…

    Obviously these things can’t be done at school, which is why a child who acts this way pretty much has to medicated to supress the energy and (I don’t know how else to describe it!). In our situation, no action was required, and he was happy. Our days were hectic because HE was, but he was happy, and that made it worth it. He is still Joshua. As he has gotten older he has gotten more flexible in his routine and loves new things and new places (and new PEOPLE), and he is more manageable with his behaviors because we have our rules pretty firm, meaning he knows what to expect. He still goes to time out several times a week (for 8 minutes), but at least he knows why now.

    I am really sorry, I don’t actually have any advice on the school front, but at home you can work on sensory things, and/or maybe learn some techniques that could carry over to school. Check this site out: http://www.sensory-processing-disorder.com/heavy-work-activities.html If you scroll down you can LOTS of activities that might be good for him. Perhaps you could find a few that he REALLY likes, and then offer them to him as soon as he gets home from school as long as the day went well (or maybe when it DOESN’T)? The thing to remember, is that he isn’t wanting things to go poorly at school. It sounds like that situation isn’t ideal for his temperment/behavior, and that’s not his fault! Nor is any of this a reason(s) for you to feel guilty. 😀

    P.S. I’ll totally be here if you decide to homeschool him!! 😉 Just sayin’…
    P.P.S. There are a lot of other behaviors and differnces that I’ve not mentioned, so I may not have painted a very clear picture of my unique fellow. Just know, I understand!
    P.P.P.S. Sorry for the novel….

  3. Awww..He has a great mommmy that is going to take care of him. My boys are still younger, so I don’t really have advice. But I know that you have enough love to figure this out. Your love shines through your post and I know your son is lucky to have you by his side.

  4. Of course I like your funny stuff but this is so well-written and so honest. I struggle with my son because… well he’s a boy and I just don’t understand the wildness and constant spinning, jumping and loud noises but that’s who he is and I love him. I’m sure it’s nothing compared to what you’re going through but I totally understand what you feel and what every mother feels who struggles with anything with their children.

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