Another

The trouble with labels is that when they're given, they're there.  And when they're needed, they're still there, but the stigma attached is often such that people don't truly believe they're needed.  And then, to top it off, when the label is legitimately given and the child is treated accordingly and this treatment includes meds, then the parent of the child is looked down upon as not parenting, but medicating their child so they don't have to.  But yet, if this is legitimately the case, the parent is parenting.  Now, I will admit that there are bad parents who, combined with bad doctors, medicate their children so they don't have to deal with the realities of being a parent.  But for many of us, this is not the case.  But the stigma attached to the labels of ADHD, ADD, ODD and others has been given because of those bad parents and bad doctors.

This little rant has been brought about because at Hassaan's last doctor's appointment the anxiety issue was discussed.  It is readily apparent to those of us that have to transition him out of our house.  Every day, every time, the words "it's time to go" bring about a meltdown.  Once he gets to where he's going, one of two things happens.  If it's somewhere where he knows everyone or is one on one with a grown up, he's FINE.  Like it never happened.  However, if he's going into a situation where there is not a lot of people and he's in them and doesn't know a lot of them, he shuts down.  It's like he's the only one in the room. He won't talk to me, his father or his brother.  Acknowledgement is nil.

Because of the extreme reactions to having to leave the house, his doctor wants him in counselling.  And I completely agree.  I do not want him on more meds.  That is the last thing I want and he needs.  But have you tried finding counseling here?  It's next to impossible unless you have either really good benefits or are rich.  But the doctor is concerned that if it is not taken care of and treated, Hassaan will end up to some degree of agoraphobia.

And I can see what he's saying, since even getting the child to go outside and play is nearly impossibly some days.

Medicine. Or lack thereof.

Tomorrow we go to see Hassaan's paediatrician again.  Not entirely sure what's going to be going on, as the last time around I was unable to go as I was having minor surgery so my parents took him.  Now, here's the thing.  I love my dad, I really do.  And I am very grateful that he's been able to help with the boys when we need it. And when Hassaan first went on meds, he was one of the many that agreed we'd seen such a positive change.  Now that we've seen that change consistently, he's gone onto the other side, where my middle brother is, in the 'he doesn't need medication' bandwagon.  So on days like today, when I've given him the pills to give to Hassaan because he's not had breakfast yet, and then he doesn't give them (because they went out and he forgot to take the pills with them, which I totally get because I've done it) and then says later "well he's just fine, see?"  It's just so frustrating.  As I said tonight, the problem is not necessarily immediate, but later - when bedtime becomes a bigger fight than normal, when he starts to get a headache because it's coming out of his system and not going back in, he needs to have his meds.  And that's where I left it.

So the lesson is to me - make sure Hassaan has his meds before he leaves the house because the chances of him getting them there are, well, slim.  I know that if he's having a sleepover and my mom is there that he will get them.  And then my next issue is that he's spending a week with my mother in law, who my husband hasn't (to the best of my knowledge) yet told about the diagnosis and meds.  In fact, the one night that he and the boys stayed over (right after my surgery, as I kicked the three of them out for some peace and quiet) and the next day I asked him if he'd given Hassaan his meds (because sometimes he forgets, just as I do) and he had.  So I asked him what his (ever critical) mother had said.  His reply was that he hadn't told her.  I asked if she'd seen it.  He said nope, he'd put it in the oatmeal when she wasn't looking.  So....  now to get my father to understand that he's gotta give the meds if asked, and Steve to talk to his mother and make sure she gets it as well.  If not, I'm not going to be able to trust him to be anywhere where he needs his meds.

Basically, the question is this - why would you not give a child on meds for ADHD, but you'd give a diabetic child their meds?   It's the same basic concept - better quality of life.

A bad sensory day

Every once in awhile, fortunately less now than before, we have what can only be called a bad sensory day.

Hassaan, along with everything else, is also hypersensitive.  This he also comes by honestly - it's something that I have always dealt with too, however Hassaan seems to have it to a greater degree than I do.  Today he couldn't handle the clothes I picked out for him, so had a tantrum.  Then he had a tantrum because I'd let his clothes touch the floor.  Then, after finally getting him dressed and going into town to go to the 2011 Walk for Autism fundraiser for a local family we know (the walk is actually in a few weeks in Toronto, they raise money for their son's "team" every year), he refused to speak to anyone but me, refused to put his hat on because it had a double shoe-string type strap on it (which he's worn for two summers without a problem now) and spent a good deal of time taking his shoes off to clean in between his toes because things were touching his toes.  In his sneakers.

These are the days when it's incredibly frustrating for both him and I.  Usually it's frustrating to me because I do not understand why he's doing what he's doing.  But on days like this, it's frustrating because I understand all too well and hate that he's going through that much like I have done and - to some degree - continue to do.  And on days like this, I ask one question - between the ADHD, ODD, anxiety and hypersensitivity....

Why has God made life so difficult for Hassaan?

Anxiety abounds

Now that Hassaan's meds have allowed him to have the self control to keep his behaviour in check with a little reminder here and there, an issue that was already there has come to the forefront tenfold.  Anxiety.

Anxiety in a nearly six year old isn't fun.  I will say right now - I will not be putting him on medication for this.  I do not want him on more meds than he is already on.  But when we go to the doctor again early in June I will be asking for a referral to a therapist.

Hassaan's anxiety issues are, to say the least, challenging.  Just stating that we will be leaving the house is enough to set him off, even if he's given half an hour warning.  Too much warning and it creates chaos.  Too little warning and you end up having to carry him from the house.  But even with what should be enough warning and reminders that he'll be leaving it still can end up with him having to be carried out of the house.  Unfortunately, there are still times that he still needs to be carried out kicking and screaming.

He and I (alone) went to the area's multicultural festival the other night.  Hammad had the privilege of going taken away after kicking his brother in the stomach.  So as he and I were stuck in traffic (the irony of being stuck in traffic in the middle of nowhere was not - and is not - lost on me.  Construction on a two lane highway that has not been expanded to create a third lane meant that it took half an hour to make a drive that normally takes me ten minutes).  Anyway, as he and I were stuck in traffic, I asked him "why do you get so upset whenever we have to leave the house?"  And he point blank answered me - "because I'm scared because I don't know what is going to happen when I leave the house, so I don't want to leave the house because I don't feel safe."

Hassaan has always had an above average vocabulary and way of speaking.  He never did the one or two word sentences, but full sentences.  And though for awhile his words didn't make sense, it was his diction, not his use of them.  As the speech therapist said - his speech patterns (use of "th" or "s" or "r" mostly) were completely age appropriate.  His vocabulary, however, was about four years about him and to some degree still is.  So when he says things like this, he truly means it and he knows what he's saying.  On one hand, I'm grateful that, many times, he can express himself enough that I have some idea of what is going on.  On the other, there are days that I wonder "why did I want him to start talking?  Please child, a few moments of silence!"

I wish that Hassaan's life wasn't so difficult.  This is, for all intents and purposes, his own person jihad, and I will do whatever it is that I can to help him overcome it.  But it is going to be a very long (and difficult) road.  I look at Hammad and see how easy he's got it and how easy everything comes to him and I wish that there was just a little of that for Hassaan.  But I love my boys and nothing will ever change that.  Anxiety and all.

Uncertainty and stress

Another school year is almost at an end.  Here, we don't finish until the very end of June, so we have about five and a half weeks left.  And while many parents dread the end of a school year due to summer childcare issues when you have kids young enough to need that, others, like myself, dread the end of the school year for an entirely different reason.

The end of the school year is hard because, if you've had a good teacher that year, you've gotten into a routine where you trust the teacher and the teacher trusts that you're going to let them know if your child is having a bad day before they even get to school so that they can do what they can to head them off at the pass to keep from making an already bad day disastrous.  The child trusts the teacher and might have actually had an enjoyable year - not something that a special needs kid always has.

And so now we're at the end of the year.  This year has been an interesting one.  The teacher that Hassaan originally had ended up having to go off on leave in March. He had a succession of other teachers which is always hard on the kids, but to the kids that don't function when there is no set routine it creates an entirely different set of problems.  When you don't know who's going to be your teacher that day, just getting the child on the bus can be problematic.  Finally, Hassaan's teacher was replaced with a long term supply teacher through the end of the year.  We were incredibly fortunate that the teacher is, in many respects, much like his original teacher.  Firm, routine and structure oriented, and very patient.  So all in all, the year has gone fairly well.  But it's not the end of the current year that is the problem. The problem is when you look at next year.

It is always frustrating and stressful that you can't and won't know who your child has until the first day of school.  I know that it's pretty much down between two teachers for next year. One I know very little about, though I do know a couple of people had issues - though they were more with comparisons with the other teacher than anything else. The other teacher Hammad has this year.  She was also my teacher way back when.  I really like her. However, while she is structured, I don't believe that she has the patience needed to work with Hassaan.  Maybe she does and I just haven't seen it with Hammad.  But Hammad did need what his teacher gave him - a really firm push with consequences for his actions.  Or rather, consequences for his lack of actions.

So now I, like many other parents, will spend the summer fretting and stressing about the next school year, about the entire month of September - if not longer - that it takes to transition back into school, and even then, if the child and teacher and compatible, an eternally long year.

What happens in the bathroom, stays in the bathroom

Our house is so small that when it's humid and the dryer is on, the bathroom mirror steams up.  One evening, I walked into the bathroom to find Hassaan drawing his name on the mirror.  He then starts to draw a picture.  When I ask what he's drawing, Hammad apparently knows because he starts giggling hysterically.  Hassaan, it turns out, is drawing a picture of his butt in the steam on the wall to wall mirror. 

I called to Abdullah and told him to get his child off the counter and get his teeth brushed.  So what did Abdullah do? Abdullah taught him (and his brother) how to turn around and actually press his butt on the mirror instead of just drawing it. *sigh*

There is waaaaaaaaaay too much testosterone in this house some days.

My son the drama queen

Hassaan (having temper tantrum): "I HAVE TO GO PEE!!!! I'm gonna pee my pants!!!" 

Me (calmly, trying not to roll my eyes): "You're in the bathroom."

Hassaan: "I HAVE TO PEE!!!" (now has no pants on) "I can't hold it and I'll pee on the floor!!!!"

Me: "You're in. the. bathroom."

Hassaan (crying & screaming): "I HAVE TO PEE!!!!"

Me: "Turn around Hassaan. You're standing in front of the toilet."

Hassaan (calmly): "Oh."