Sleepness nights

So... The one thing I used to thank my lucky stars for was the fact that Malakai slept like a log, from eight weeks onwards. In fact, I was probably one of those annoyingly smug parents who all the other sleep-deprived-parents wanted to smack. I couldn't help it... but I was very very grateful.

Then Harlan was born - and he didn't believe in sleep. It's just not really his thing. And that's ok, I've come to terms with it (it only took me about a year... but I've accepted it now).

This post is not about Harlan though - because I know his night-time wakings have always been a part of who he is and he's used to crying and seeing his mom arrive to comfort him. Don't even talk to me about sleep training...

This post is about Malakai. He's not sleeping anymore. For the last six months or so, he's slept terribly! Now, I understand that children with Down syndrome do tend to have poor sleeping habits - they have a high incidence of obstructive sleep apnea as well as more time spent in lighter-sleep-stages than a typical child.

However, Malakai seems to be really uncomfortable in his sleep, as if something is hurting or annoying him. Of course, the first thing I did was to consult his ENT specialist, who told me that Malakai's tonsils and adenoids are perfect - so there is no chance that he has obstructive sleep apnea. OK - tick that off the list.

But he continued to wake up moaning and tossing and turning 5 out of 7 nights a week. I decided to give him neurofen, a painkiller, and after this he sleeps like a dream. I spoke to his GP about this and she confirmed that neurofen does not induce drowsiness, so if he was just being naughty, he would continue being naughty. But because he sleeps afterwards, it means that he IS in pain and the neurofen soothes this and he's able to sleep.

So - if he's in pain, what is it from? I started researching, because when Malakai wakes up moaning, the top half of his body is still and he's constantly stretching, rubbing and kicking his legs. So I thought that perhaps it could be his legs?

So - my friends - I am finally at two possibilities and wanted to know if any Ds Mamas out there had any experience with either of these?

It could be Restless Leg Syndrome, which can affect children as young as two years old (and Malakai is 2 and a half). It is characterised by legs that are sore when they are AT REST, so the person wants to move them in order to soothe the pain. It also happens often at night and affects the quality of sleep. It is neurological disorder that is caused (in part) by the underproduction of endorphins (and I believe this is the case with children with Down syndrome?). At this point, I have no idea how we could treat it if this was the case. I have read that certain medications can be prescribed, but of course, when it comes to a toddler, we'd have to go and see someone who could really help us out here.

The second possibility is something called Benign Joint Hypermobility Syndrome (BJHS). It sounds rather complicated, but its not really. It's a condition that often affects people who are double-jointed, i.e. have hyper-mobile joints (as is the case with Down syndrome). Because of this hyper-mobility, there is less proprioceptive input from the leg joints, and so these individuals are putting too much strain on their legs during the day's activities (and not noticing it) and when they lie down to sleep at night they feel pain in their joints. For someone like Malakai, who's climbing, running, falling and jumping all day - he could be hurting his legs and not know it. Thing is, treatment involves controlling activity (impossible for Malakai) or psysio-therapy, which Malakai is already attending, to strengthen leg muscles. If I have to wait for his legs to become more muscular, it could be months and months of sleepless nights for him...

What I do know is that I have to sort this out. Malakai is not getting the rest he so desperately needs to be able to learn to his full potential in the day time.  And after a bad night's sleep the stinker is still up at 5:30am (as hard as I've tried to change that... another thing I've come to accept... lol).

Any moms out there experience something similar? Any ideas? Am I reading too much into things? Do all children with Down syndrome moan in their sleep and look like they're in pain?  It's just that the pain medication actually works and helps him to sleep, but I can't give him pain medication every other night...

Any help or tips would be awesome! Thanks!

Happiness is...

So... I'm meant to be working... I have deadlines looming over me like black thunder-filled clouds. So, naturally, I'm updating my (non-paying) blog!

I couldn't resist though...

Last weekend, we put Malakai in his little wagon and his dad pushed him and pulled him... I swear I could smell burning rubber (nevermind that the wheels on the wagon are plastic...). The faster Dad went, the louder Malakai laughed and wider his smile. He's a little sensory-junky this biggest boy of mine!

And little Harlan? Well, let's just say he's not so keen on his dad's home-made roller coaster efforts... This was the closest thing to a 'smile' that I managed to catch on camera - the rest of the time he was holding on with white knuckles. Poor monkey!

THAT word again...

It never fails to sting. Like a petulant bee, refusing to move onto other sweeter things... like putting my winter-frozen foot into a hot bath... When I hear the word, it is as if the world dissapears, morphed into a hazy background. There is only one loud, big, slap-you-in-the-face word... retard.

I gulp. Blink. Divert my eyes. Should I say something? Explain how they are using my son's disability as an adjective. Do they care? Or am I just wasting my breath?

People may argue, they may try to explain it away, that it doesn't mean anything, it's just a joke, it's not meant to harm... but I know. I know because I myself used the word, before my son was born. And I can tell you, it was never used in a positive light. I used it as a way to describe something that was 'less than', something that didn't quite measure up, something that was stupid.

I feel sick when I remember how I used to throw the word around - I often remember how casually I let it roll from my tongue. I'll remember one time or another, when I used the word... while I'm making coffee, or while I'm running a bath. While I'm cooking or while I'm looking in my son's eyes...

I can never take that away. I can never sit from a lofty height and preach to others. But I can stand solidly on the earth and say that I was there - I know what using that word is all about... And it's not good.

It's disrespectful. It's hurtful. It's hateful. 

I know this.

Do you?

Will you help me to spread the word to end the word?

If you're still not sure, read this... it might convince you.


The People Who are the R-Word
(by David Hingsburger)

The people who ‘ARE’ what the ‘R’ word refers to have a long history.

They have been torn from families and cast into institutions.

They have been beaten, hosed down, over medicated, under nourished, sterilized, brutalized, victimized.

They have been held captive, have been enslaved, have had their being given over to the state.

They are the group in society most likely to be physically, sexually and financially abused.

They are the group least likely to see justice, experience fair play, receive accommodation or support within the justice system.

They are the group most likely to be bullied, most likely to be tyrannized, most likely to be the target of taunts.

They are the least likely to have their hurt taken seriously, physical hurt, emotional hurt, spiritual hurt.

They are most likely to be ignored when they speak of pain, have their words diminished by an assumption of diminished capacity.

They are the least likely to ever be seen as equal, as equivalent and entirely whole.

They are the victim of some of the most widespread and pervasive prejudices imaginable.

They are those that the Nazi’s thought unworthy of life, they are those targeted by geneticists for non-existence, they need fear those who wear black hats and those who wear white coats.

They are educated only under protest, they are included as a concession rather than a right, they are neighbours only because petitions failed to keep them out.

They are kept from the leadership of their own movement, they are ignored by the media, their stories are told to glorify Gods that they do not worship.

That they are a ‘people’ is questioned even though they have a unique history, a unique voice, a unique perception of the world.

That they are a ‘community’ is questioned even though they have commonality, they have mutual goals, they have a collective vision of the future.

That they are have a legitimate place at the table is questioned simply because no one’s ever offered a seat.

They are a people.

They ask for respect and receive pity.

They ask for fair play and are offered charity.

They ask for justice and wipe spittle off their face.

They ask to silence words that brutalize them and their concerns are trivialized.

They ask to walk safely through their communities and yet bullies go unpunished.

They ask to participate fully and they are denied access and accommodation and acceptance.

And this is NOW.

This is the people who have walked the land of the long corridor, who have waited at the frontier of our bias to finally be here, now. They have survived. They have come home. They have continued, silently and without fanfare, to take hold of freedom and live with dignity. They have given everything they have for what others take for granted. Their civil liberties are perceived as ‘gifts’ as ‘tokens’ and as ‘charity’. Their rights are seen as privileges. Their movement is, as of yet, unacknowledged. They are a people recently emancipated, new citizens, who are tentatively discovering their voice.

It is a voice not yet heard.

It is a voice not yet respected.

It is a voice not yet understood.

But it is speaking.

And when it is finally heard. The world will change.

The ‘R’ word is an attack on a people who know discrimination. Tremble when you say it. Because those who should know better will be held accountable to those who know best.