someone slap a label on that kid!

It's funny how you spend so much effort as a teenager making sure no one labels you (unless if you were in the 'Popular' crowd, then maybe you liked that label) When you head into parenthood, you try to do everything right for your child so that no labels stick on them either. Labels are a bad thing, after all. They often identify you to a group, and most of the time, we want to blend in, and not stand out as being associated in a crowd.

I spent my teens hot headed (shall I say a bit Fiery?) and stubborn; disassociating from certain groups. I wasn't Popular or Athletic, nor was I a Skater. I wore the label Weird with pride, sometimes with indifference. I wasn't loud, but I was confident. I had enthusiasm and hyperactivity, yet was quiet enough to be a compassionate friend and listener. I didn't fit the stereotypical teenager seen in movies or on tv, or in books or on the news. And I was proud of that. Although I sometimes felt the need to fit in somewhere; a desire to be a part of a recognized group.  (As an adult, I now see that my small knit friends was the perfect group all on its own; we didn't fit the typical labels.  I see how there were more of Us in that average-but-awesome group than Them with the groups!)

We always seem to fight labels as if they are a negative thing, but I'm entering into a new territory that makes me question the aversion.  Especially with World Autism Awareness Day last month (April 2) and our own searches for an answer to Rhys' delayment.  Autism is one of the most recognized disorder out there right now and effects 1 in 68 children, according to online searches. (I came across a magazine article written in 2011 that said the stats were 1 in 100 children. Wow. Quite the change in 3 years!) It is not contained to a certain geographic region or race and effects so many lives that the UN has declared a National day of recognition for it.

I think it's great that there is so much going into support to help families deal with the complex issues they face with Autism. And it's great to see walks and fundraisers for more research so that the help is there.  But it is on a day like that day that it makes me wish Rhys was Austistic.

Now, dont get me wrong. I do not wish any type of disease or imparement or illness or stigma on any of my children. But I do wish I had an answer for him. And autism would be an "easy" one.  It would mean knowing how to deal. It would mean having a plan. It would mean getting the support he needs. It would be a start to the next phase of life, but at least that phase has a huge community of doctors, supporters, therapists, and even celebrities all who understand and deal with the same things you deal with. And that label gets you in the door.

I have looked into the  Austism Spectrum but Rhys just doesn't fit that many criteria; and I keep looking every few months. I do those at-home tests online, but it doesn't all add up. And I've had his preschood teacher and his doctor and pediatrician all say that he doesn't fit the label. Which is a good thing. But also a frustrating thing.

Currently, he is a label-less boy who is falling through the cracks.

As I wait for something to pop up for him, I find my other son seeking a label as well.  I was talking to my friend about the teacher thinking that Kai may have ADHD, and my surprise at him fitting some of the symptoms. She looked concerned and replied with a shake of her head, "Oh, you don't want to put him on medication!"

I understood her thinking. It can seem that doctors and teachers want to medicate and subdue our children. Especially our boys. And it's not something that I want to do either, but after talking with the school SEA Co-ordinator, and seeing how Kai is at home, I can't help but feel that I'd accept medicating him if it will help!

If slapping a label on him gets him the help he needs, then I'm all for it! Please, give us a name! I am learning that without a name, schools can't seem to do anything, and doctor's don't know what to do. We need that label to move forward.  I'll take an "easy" and friendly, well-known one (like Austism and ADHD). I'll even go for a complex one that is misunderstood. I just want something.

And to think that one day I would be desiring a label for my child! We don't want to let a name hold him back, but use it as a way to understand and learn. And to move forward. 

It helps get you through the door.

a new angle

A few weeks ago, my husband and I were called in for an appoitment with Kai's teacher. That's never a good feeling! She has been really concerned with his school work and behaviour, saying that he has missed a lot of school and isn't completing work. We had talked to her about this in the Fall, but we thought things had gotten better.  She is worried that his schoolwork is failing due to health issues as he's falling asleep in class and is basically a zombie and not seeming to take in any information.  

We have troubles with him at home with getting to bed on time, generally listening to us at all really, with doing any time of chore or task. He also has NEVER been bothered with consequences, which makes things difficult. He'll throw a temper tantrum at first (and, yes, he is 11yrs old), but be stubborn enough that he won't be bothered by it later. We have been struggling with finding a way to deal with him, but everything seems to turn into a fight. It's been rough.

Other than the usual stuff that we already knew about...his teacher mentioned something that completely surprised me. She wondered if he has ADHD! The funny thing is that my husband agreed it was a possiblity. I'm not saying that it is NOT possible...I was just so surprised as it had never crossed my mind before! However, I looked online and found the list of symptoms on the Mayo Clinic site and was surprised at how much of a possibility it is!

 Attention-deficit/hyperactivity disorder (ADHD) has been called attention-deficit disorder (ADD) in the past. But ADHD is now the preferred term because it describes both of the primary features of this condition: inattention and hyperactive-impulsive behavior.
Signs and symptoms of ADHD may include:

• Difficulty paying attention
• Frequently daydreaming
• Difficulty following through on instructions and apparently not listening
• Frequently has problems organizing tasks or activities
• Frequently forgetful and loses needed items, such as books, pencils or toys
• Frequently fails to finish schoolwork, chores or other tasks
• Easily distracted
• Frequently fidgets or squirms
• Difficulty remaining seated and seemly in constant motion
• Excessively talkative
• Frequently interrupts or intrudes on others' conversations or games
• Frequently has trouble waiting for his or her turn

( see here for more information:  )

In our meeting, the teacher had also included the school Special Needs Coordinator, who deals with ADHD students. We had never met her before, or even knew her name, and she hadn't met with Kai before this meeting either, but the teacher thought it would be good to bring her in just for an assessment.  We were fine with that because this problem was starting to become something bigger than we had thought it would be. While we didn't know he was having this much trouble in class (his teacher said that one week he was such a "zombie" that she didn't even know if he even learned or listened to a thing that whole five days, and thought it may have been a write off in terms of usefulness. Wow. Harsh. Bigger that we thought.)  we did know that he was becoming more difficult at home. So many late nights, so much frustration and anger and temper tantrums, and so much arguing and causing fights. He made car rides so stressful! And we were at our wits end with what to do for him, but knowing something had to change!

At the end of our appointment, the SN gave us a questionaire to fill out. One for us and one for his teacher. And, just like in filling out one for Rhys and his special needs, I found it hard. You have to sit there and focus on all the possible negative qualities your child has, and it is tough on a mommy heart. Some of the questions were surprising, such as "has your child ever stolen when confronting others (ie mugging, purse snatching, armed robbery)?" or "Has your child ever assaulted anyone sexually?" Those made me nervous and I was wondering, 'are you sure this is a school questionnaire and not something the police needs to know of?' eep!  You had to give your answers in numbers (0: not true/never all the way to 3: very true/frequently) A lot of them weren't too hard to answer, but a few had me not quite seeing it as my husband did, so we had to discuss them. The easy ones were "does your child blurt out answers before the question is completed?" or "annoys others on purpose" or "is the last to be picked for teams and games." or "is a poor speller" (that seemed strange to me, as if spelling had anything to do with behavioural issues) or "become irritable when anxious?"  (We haven't noticed any anxiety)  

The hardest for me were the last three questions:  does your child's problem seriously effect school work and grades? friendships? home life?

The questionairre also gave a place for us to write down what we thought were his strengths, but after focusing on negative things, it's hard to get into that mind set.  My husband said that he has "good mechanical aptitude". I laughed. That sounds so clinical. Who even knows what that means? I mean, other than my mechanically minded hudband!  We added it anyways.

So now we wait. I'm not too sure what will happen next, but I guess we will hear from the SN Coordinator and maybe do further testing.

Until then, we are trying what we can at home. We are being more strict in his bedtime and are giving him Melatonin to help him sleep.  I have never been one to believe in giving medications on a long term basis (other than ones that are medically needed, such as my thyroid pills and the ones Kai takes for his cardiomyopathy, of course) but we thought this was needed. Especially since it seemed no matter what time we send him to bed at, he was still staying up late and struggling to fall asleep and struggling during the day time. Sleep was one of the concerns his teacher brought up, so we knew we had to address it. 

We were amazed at how it changed him almost immediately! He was suddenly a happier boy! He wasn't fighting much with his siblings anymore and he was helping out in the family and it was just a shock!  I greeted him with a "hello" one morning and he responded "good morning!" cheerfully!  I blinked and wondered who this boy was!  Sometimes change is good!

Even his teacher has noticed! When she asked him about it, he said that his parents were making him take melatonin, and so she asked what he thought about it, to which he replied that it "felt like his brain was awake now"! Wow. What does that say?

I'm not too sure what will happen next, but I guess we are starting a new journey with him. One that has been needed to be addressed for a few years now. I'm apprehensive and nervous, but also hopeful. Maybe this could be the answer to our worries!