Sleep

I'm seeing some irony here, as I started this blog to post a reply to a blog that was too long for Blogger comments, and once again I find myself needing to do the same thing. Oh why won't you let us post long replies in the comments, Blogger Gods?

I just posted a lengthy reply to a question posed by Stark. Raving. Mad. Mommy. It was a question about sleep. I had some thoughtful ideas, and I hit 'enter'. Blogger told me the comment was to long but when I hit 'back' it was all gone. So I am going to attempt to re-create my reply.

Clonidine. No one likes the idea of medicating their children, at any age. However, in terms of something that helps kids sleep, this one is fairly harmless. It isn't a sleep aid or a narcotic of any kind. It's actually a blood pressure medicine, so when you take it, your blood pressure drops just a bit. So, if your blood pressure is high you will feel normal, but if your blood pressure is normal, you will feel sleepy. We noticed the effect is quite dramatic, usually about 15 minutes after the kids took it they would be out like a light (and also of note, neither boy needs it anymore, so it seemed to be something we needed to get a working sleep routine in place but not a lifelong need). We also used very very low doses which I took som comfort in. Ideally, no one needs to resort to meds to get some sleep, but the truth is that the long term effects on health from not getting sleep can be much more dangerous than any effects from this particular med.

Bedtime Snack. C tends to resist dinner, because he is too busy doing things he actually likes to do (eating not being one of them) so for a long time we were withholding a bedtime snack to 'teach' him that he had to eat at dinner. However, a hungry brain is an anxious brain, which can lead to inability to sleep or incredibly light sleep. And when we were honest with ourselves, he wasn't 'learning' anything about actually eating at dinner by going to bed hungry. So we decided to let him have a bedtime snack. And a big one. It's often cheese, which we were told buy our dentist will not cause cavities so is ok for him to eat after brushing his teeth. Incidentally, our other son (not on the spectrum, but with ADHD) was prone to night terrors, where he would wake up screaming that he saw a spider or someone at his window and not calm for a hour or so. The doctor made the same recommendation - have a snack by his bedside table, so that if he finds he is sleeping fitfully he can eat - then he will fall into a deeper sleep and not have the night anxiety. It worked like a charm.

Heavy Blankets. Sadly the 'official' weighted blankets are expensive, and I am crafty but no the fabric kind of crafty so I can't make one myself We have an old heavy afghan that we put on top of C's duvet and it really weighs it down. Sadly we have to do this year round, so he has lots of hot nights in the summer, but if we don't he can't rest. I'll have to investigate a lightweight blanket for summer months.

Give In. I know this is a tough one. We are told again and again that consistency is important, to be on the lookout for coercive process, blah blah blah. We are also terrified that what we do today will haunt us in 15 or 20 years. But the bottom line is, sometimes we just have to climb into bed with C. This is rare, now, though it used to happen several times a week (it got better, not worse, when we gave in, which is actually counter to what we thought would happen) and now I think it happens once a month or once every two months. It's usually because something very anxiety provoking is happening or he is sick or very excited about something (Christmas was an issue.) One of us getting into bed with him when he just can't settle helps him get into a deep sleep, and we both prefer that to him getting into our bed.

The more successful nights we had, the less we relied on these things. I know there is more and more research in child-rearing in general that by helping kids calm down, they learn what it is to feel calm and they learn how to calm themselves (as opposed to the old school idea that if we calm them they never learn to calm themselves ... old school cry-it--out kind of theories.) This has certainly proven true for us, and not just for sleep. The more things we can put into place to take the anxiety out of a situation for C., and to put a strong memory of our presence into the situation, the more he is able to do these things on his own. So we don't use the meds anymore, and we don't end up in his bed very often but we do understand that sometimes he just really needs extra support and we don't fight him on that. We are all getting much more sleep that way.

I don't mean for any of this to sound like we have it 'all figured out' because I could list for days the routines we need to work on. Bedtime itself is one of them - how I'd LOVE for C to go to bed on his own - but these are things that have worked for getting us through the night successfully. Hope it helps some.

How C Made Peace With the Upstairs Neighbours

We live in a split level duplex What this means is that where most duplexes are side by side, each space having a couple of floors and being narrow, in our place we each get our own floor. We are on the ground floor and our neighbours are upstairs.

I think these places were built in the 1950s. I don't really have anything to cbase that guess on, other than something someone said once ('I think they build these in the 50s') and the fact that they seem pretty old and run down. Noise travels very quickly. We probably know a lot more about the upstairs neighbours life than we want to know, and we are keenly aware that they know a lot more about ours than they want to know. Especially keenly when C is melting down.

Sometimes I wonder how aware C himself is of what it means to be sharing spac like this. So I was particularly interested in this conversation I overheard recently. The neighbours have a new puppy that plays in the front yard, and C is obsessed with it, so he runs out to play with the puppy and has a lot more face to face interaction with the neighbours because of it. Here is how this one went:

C: Do you sometimes hear me screaming?
Neighbour: Yes.
C: And throwing things?
Neighbour: Yes.
C: And do you hear me swear?
Neighbour: Yes.

*pause*

C: But you swear too.
Neighbour: That's true.
C: And you drink a lot and shout.

*pause*

Neighbour: That's also true.
C: So then we're even.

*pause*

Neighbour: OK. We're even.

A Normal Reaction?

I recently made a decision to be more honest with people in my personal life about how I am feeling and what I am struggling with. Just to be honest when asked how am I doing. There are a few things that motivated me in this. First, I find it exhausting to always paint on a smile for people when they ask. Second, when I cope so well all of the time and allow people to believe I am OK, I find there are less offers to help and more expectations placed upon me. Third, if what I go through strikes a chord with someone else, and we can somehow support each other through similar tough times, that is a great thing. And fourth, I spend so much time professionally painting a picture of someone energetic, positive, and successful, I need to be able to have space to just be honest at home and with friends.

Which isn't to say that I am never honestly energetic and positive and successful. There are a lot of times when I am - I feel enthusiastic and energetic. In fact, since I went off wheat and dairy, I have more energy than I remember having in my life. I don't mind taking the stairs when the elevator is slow. I don't ind the second trip on from the car with groceries. I don't mind running out to the car if I forgot something. I don't feel like I am constantly dragging my body around. I haven't actually lost weight, but I feel like I have - I feel lighter and more agile. But I don't always feel positive. And I don't like to have to play that part all the time if it's just not true.

And here's what I have noticed since being more honest about my feelings.

People are starting to tell me they think I am depressed.

And I'm finding myself really bothered by this.

See, I know what depression is. I have lived it for many many years of my life. I have been in that place. It is familiar, I know it. I see it in other people sometimes before they see it themselves. And this isn't it.

Yes, lately I have been teary.

But lately watched the 5th school placement for my 10 year old child go off the rails. I have been advocating for him, meeting at the school, the school board, privately with advocates and therapits, and I still don't have an answer. I have been reminded again and again that budget shortfalls may get in the way of us finding an alternative placement. I have listened to his stories about his day and just ached inside because I know the class he is in is so wrong and is effecting him so negatively, yet I am unable to fix it.

Lately I have been unable to get behavioural support and intervention in my home because we are out of funds and our funds don't renew until the end of July. I have asked for additional assistance but been told there are no dollars in the government's budget to help me. I have a different advocate working with me on this, and she two meets the same roadblocks - the funds just are not there.

Lately I have watched my homelife fall into a pattern of meltdown-response-meltdown-response. Our days are full of situation management. We haven't had plain old family fun in far too long. We feel like we are not safe to go out in public because of the meltdowns, so we are trapped here in this pattern.

Lately I have listened to the cries of my other son, who's life is unfairly effected by this. He has been getting out to friends' houses more and more, but still has to be here on school nights ad weekend evenings. And when he is here, he gets very little attention to an of his wants or needs.

Lately I have listened to my younger child scream that he hates me and wants to kill me. I have listened to him make up little songs and rhymes about killing me, or throwing pizza at my head.

And so yes, lately I am teary.

But sometimes I think tears are just an honest expression of a normal reaction to a totally abnormal life.

How can I be an honest and authentic person and be happy through this time?

for Ramona

I have a friend who recently blogged about her frustrations with conflicting opinions about her son. I wrote this reply and it was too long for blogger's comment field. But I think I said some stuff in it that really needs to be said. I've been wanting to start a blog for my own thoughts for some time, so I decided this would be the inaugural post. I'm leaving it how it was written, as a response to her, because I don't want to mess with the honesty of it. You can read her post here for background, but the gist is that her sons teacher doesn't agree with her private psychologists assessment, and she is also confused about conflicting opinions about a behavioural verses sensory approach to treatment. SO here goes ...


I have had so many similar struggles to your own, and I know how incredibly hard it is. We are currently in the process of Cs 5th school placement deteriorating. He's 10. 5 schools already. It is so hard to watch.

I had a really good sit down with someone at the school board, and she was really candid with me. She told me that the entire sensory approach is so new, and so different from what teachers and behaviour consultants have been taught for so long, that they are all looking really askance at it still - it looks a bit like quackery. And while I appreciated her being so honest, where so many other professionals just talk down to me when I suggest a sensory approach, I couldn't help but feel extremely discouraged. I am looking for the perfect school placement for my son with desperate sensory needs in a system that on the whole does not believe his sensory needs are as important as I know in my heart they are. There may be the occasional teacher or aid scattered through the district who 'gets it', but most won't and many will look down on me for suggesting it. It's a old science/new science transition - like when we discovered the world was actually round - people resist it and vilify it. Its exciting in a way because there is new knowledge that we know will help kids for generations - but it's an awful time to have that knowledge and want to apply it when so many professionals don't believe it's true.

I just don't know what to do. I am investigating a private school though that will cripple us financially. I am also considering homeschooling, though I'd also have to leave my job for that which would be really hard on us too. I know I could do it, there is a very strong support network in our city for families with kids on the spectrum so I'd be able to get out and interact socially with him, plus participate in lots of programs in our community centers. But I just feel so overwhelmed by the idea. And exhausted.

I have to say, if your private psychologist diagnosed Sam, chances are EXTREMELY high that he is right. We had a similar path with Coram - the school took a behavioural approach to him (and still does) and actually refused to assess him, because they were so convinced it was a behavioural problem. I saw a little boy who would NEVER make a choice to behave in such a way as to lose privilege after privilege, and face consequence after consequence. It made no sense to me. I had been told by our mental health worker that there was no chance Chad Autism, but we were both convinced something like a profound learning disability was getting in the way of him behaving the way the teachers expected him to behave. So we went for a private assessment, and I was stunned to get the Autism diagnosis. But I trusted the psychologist, did some research, and followed my gut. And the more I read, the more I knew it fit.

That was 5 years ago. And I will say this - when a grade kindergartener is behaving like a preschooler, you maybe raise an eyebrow, or teachers maybe raise a few concerns and suggest stronger discipline needs to be in place, and people start saying things like 'he'll catch up.' But its the trained psychologists who can recognize if there truly is a problem. Because 5 years later the gap between C's physical and emotional age has widened, his behaviour is still similar at times to a preschooler, and since hes almost 5 feet tall and in grade 5, we all know beyond a shadow of a doubt that the diagnosis was right.

Preschool is a pretty controlled environment. No teacher who only sees a child in that environment should feel themselves qualified to assess him. Not to mention the years of training and experience they DON'T have that the psychologist does have. Even the school psychologists don't have the experience that the private one does, because they see many different kids with different needs. Private psychologists often have a specialty - we chose on with a specialty to recognize learning disorders. And while some say that specialties can lead to bias, it is my opinion that the kind of focuses experience and research you get from specializing in one thing is invaluable.

So I guess I'm saying that I think it is laughable that a preschool teacher and a school psychologist think that they know better than a private psychologist.

But I will also say this: this is a step in the journey. People will question you every step of the way. I have a principal now who despite all of this is still insisting that a note made in C's file in Kindergarten before he was assessed is more correct than his diagnosis. Not everyone understands that you as the parent are the EXPERT here. They will look down at you, judge you, manipulate and belittle you. And it's all to suite their own agenda. You may go a year or two without it, but it will come back when a new person comes into the picture, so be prepared, be watchful, and know that you are the expert and they need to be listening to YOU not the other way around. This isn't something I knew a couple of years ago, but it comes with time. I think we are so used to teachers and principals and doctors being the authority figures in our lives it is hard to see them any other way. Just keep reminding yourself - you are the expert, you know your child and you know his rights and your rights. Keep pushing, keep fighting, keep standing up for him even when it makes you shake afterward.

It's all overwhelming, and sometimes when I sit and reflect on it I wonder how anyone copes. But we do. We need to have our cry sometimes, we need to leave he house a mess sometimes (or most of the times in my case) but we do it. And we find extraordinary beauty in the little things. Like a smile. Or that shiny 'tuned in' excited look in our child's eye that we see so rarely but other parents take for granted. And we find people in our community, both online and offline, who understand and support us. And on our good days we reach out and support other people. And sometimes when another mom is in a store, on their knees in a spilled box of cereal, holding a child who is screaming with his hands over his ears, looking embarrassed as other people walk by and glare, we can say to her, 'It's OK. I understand. You are doing a great job.'