Happy birthday Dada

To my husband - we love you dearly. You are so precious and special to us, we love having you in our lives and hope that you know how needed and loved you are. XXX

Shaving cream anyone?

Now... anyone who knows Malakai knows that he's a bit of sensory-junky. He just loves shaving cream... uuummm... really really loves it. As for Harlan, well, he's keen but not so much! LOL!

In the garden

Like any other toddlers, my boys are happiest when they are outside, running amok. Thanks to my mother, we were able to clear out a very overgrown piece of garden on the side of our house and create a garden especially designed for the boys to enjoy. It has been over a year now, and are they ever enjoying their beautiful space! Thanks mom!

Out and about

We are really blessed to have so many fun and kiddie-friendly places to visit - this was a lovely morning spent with the boys.

Saying goodbye

My sister has been gone (in Australia) for just over 4 weeks now... I do miss her terribly and will forever cherish our last weeks together. It was filled with so much love, chaos, fun, laughter and joy...

My niece, Natalia

Malakai & Natalia

The three 'Ls' - Leigh, Lorraine and Loren

Our last pic together

My niece and I...

FLASH!

I have been taking photographs lately... I just haven't made found the time to edit them and get them onto the blog. So the next couple of posts will be simply pictures (and a word or two)... Enjoy grannies!

OK... so every now and again I get a bit of a bee in my bonnet when it comes to playing a bit of 'dress up' with my boys. This doesn't come around often because I know that within 15 minutes whatever gorgeous, colour-coded, matching outfit I've managed to scramble together from what is actually washed and in the cupboard, will just be covered in mud, juice, biscuit crumbs and bits of toilet-roll-inner...

But nonetheless... Here are my boys, dressed ever so smartly for their cousin Jack's birthday party! Aren't they just super adorable?

It's not acceptable

This is to the point and honest - just do it people, eradicate the r-word from your vocabulary today.

Talk to me baby!

One of the first things I decided to do when I received the diagnosis that Malakai had Down syndrome was to invest in sign language tools. I bought books, flashcards and even imported DVD's from the United States.

Why?

Well, as a big talker and communicator myself, I tried to imagine a day where I was unable to communicate with others and share what I was thinking and feeling - the idea of it made me rather want to die than to be alienated.

So why would I ever knowingly put my child in such an awfully frustrating position?

It took Malakai a good 18 months of daily sign demonstrations before he started to really take off with using signs regularly and today, at just under three years, he can do over 150 signs and uses about 30-40 on a regular basis to communicate, share, ask and express his feelings, thoughts, ideas, understanding of concepts and love for us.

I really incorporated signing into everything we did and forced myself to keep it up - knowing that I was potentially giving him the biggest gift of his life.

The payoff has been immense. Oh yes, there are studies that point to signing increasing literacy and language acquisition, and yes it has meant that I have made sure my child doesn't exist in a world that is devoid of his input... Those are all very important benefits.

And yes, my son is now signing two and three word sentences and has been sight reading words like 'dog', 'cat', 'more' etc since he was two years old. I know that he's able to communicate in sentences and read simply because I have ensured that he was given the ability to sign.

But the most important benefit, in my opinion, is the way that signing has enabled me to really understand just how bright my child is. I can see his understanding of concepts, I can watch his knowledge grow on a daily basis, and this is mostly through his ability to sign to me.

I see my child differently, I see his ability far more than I see any disability. That is the beauty of signing, of sharing, of talking with my child far earlier than simple verbal motor planning skills would have allowed. I see my child as able, competent, clever, and oh so expressive!

The fact that parents of children with Down syndrome still sit today and question whether they should do sign language with their precious children simply confounds me... Why would they not want to give their children a voice? Why would they not want to share and talk and communicate with their children?

Signing has been the single most important intervention that I decided on for Malakai's development and I think that every single child can benefit from the ability to communicate.

Say whaaat?

It has been a long slog... For those who follow my blog, you'll remember our months and months of sleepless nights. Our excellent sleeper (read: Malakai) did a full 180, and became a not-so-excellent-sleeper.

Here is my sheepish conclusion to our sleep-debacle.

Malakai has mysteriously started sleeping well again. How? Well, damned if I know - seriously. I wracked my brain (and doubled my caffeine supply) for months trying to figure out what was going on, I visited many doctors and came up with many hypothesis (in the complete absence of any of the doctors taking me seriously or proposing a solution that worked).

I must say, initially I wasn't concerned. I put his lack of sleeping down to teething, a new brother, winter colds and flu - y'know, the regular stuff. But then it went on... and on... and on... and it got worse with more frequent wakings and more moaning and less and less of the good stuff - sleep.

I went from mention his sleep issues in passing during routine check-ups, to specifically asking his doctors if there was something we should be looking at, to taking him for specialist tests and researching the Internet for answers, links, clues - anything.

Eventually I recorded his nighttime antics and got Malakai to a friggen expensive paediatric neurologist. Eventually! A doctor who agreed that what she saw on the video tape was very concerning - at last, someone believed me! At last, I didn't feel as though I was making this all up - she saw it too!

And then what happens? A week later Malakai starts sleeping through again. Mysteriously. Without any warning... much to my excitement and I must admit - dismay as well. Why? Well, now I do feel like a completely neurotic attention-seeking mother... and I don't like it. Because I was worried, for months!

So, we did a sleep EEG and sleep study anyway - just because it was scheduled and we had the very expensive doctor's expert assistance at hand. And, the tests came back clear - good news and all.

So here we sit with the mystery of the 9 - 10 months of no sleep, the disturbing sleep behaviour that even had a paediatric neurologist concerned, and it all just disappears. I give up. Is it possible for sleep issues to occur, disappear and then reoccur? Well? I can't say because honestly I am sick to death of trawling the Internet for information... I am all infomationed-out.

I am, however, open to the notion that because Malakai has Down syndrome I may take things a bit more seriously. And yes, many doctors looked at me as if I was crazy - "your toddler isn't sleeping? ha ha ha! join the legions of other mothers..." But I have a problem with anything that can potentially put a bit more distance between Malakai and his Full Potential (that shiny thing in the distance that is currently just a fuzzy concept...), and months of sleep deprivation does not a healthy learner make... So, yes, I think I may have been more concerned about it than I would be if Harlan suddenly decided to stop sleeping (that is, of course, purely hypothetical, because he has never slept well).

Am I the only one out there? Or are other mothers who've been blessed with children with special needs as anal and demanding and fierce as I am when it comes to their kids? I don't think I'm alone... I hope I'm not alone...

Precious

I just finished watching the movie "Precious". Very seldom do I think that a movie comes along that really takes difficult topics head on. No holds barred, full steam ahead, calling a spade a spade... whatever way you'd like to describe it.

But I am left wondering what I have just witnessed.

Did I see abuse, dysfunction, darkness and despair? Yes, I think that was pretty obvious. But I think I also saw hope, redemption and prayed and cried and urged Precious to find the strength to make it better.

But how? How do you find the faith to move in a positive direction when all you've ever heard is that you're stupid, fat, useless, and unlovable?

Oh my soul - that another human being has to be brought into the world hearing those words come from their mother's mouth. I just cannot comprehend it - and yet, I know it happens. I know it's out there. I know that too many children have heard those words.

And yes, the fact that Precious' first child was referred to the entire movie as 'mongol' did not escape me. Was I offended? No. Was I terribly hurt for that child? Yes. Did I appreciate the honesty and understand that this does happen? Yes.

The movie ends as Precious takes her first daughter (who has Down syndrome) and her son and walks away from her mother (and hopefully her past) forever. And we are left wondering if she'll make it. Can she make it? Lord, I hope she can.

And I am left not wondering about the movie as much as I'm wondering about the world in general.

Just recently the world celebrated the death of the nortorious Osama Bin Laden. Yes, I think his death was news-worthy and yes, I think that may help to finally bring the whole 9/11 atrocity to a close.

But as I watched the news coverage that day, just over a week ago, I remember thinking clearly to myself - 'Have we lost our minds?'.

Yes, I know that his death is important and that he caused the deaths of thousands of innocent men, women and children. That because of him families are without fathers, mothers, children and siblings that they loved dearly.

I get all of that.

But lets rewind even further - why the hell did he spend years and countless amounts of money planning to fly planes full of people into buildings full of people? What the hell for?

To prove some ideology?

And then to retaliate and spend more countless amounts of money on wars all over the place for what? What? And how can anyone defend spending this kind of money - when there is even one Precious and even one child being called a mongol in this day and age...

Can we not look at our own back yards and just fix the terrible mess that is growing there? Can we not decide that life, dignity and love are important? More important than revenge, war, money and industry?

How can we, as citizens of the world, be ok with spending billions on destruction, war and death when only a fraction of money is being spent on making this place - this planet - inhabitable and sustainable for everyone on it.

When is it going to stop being about us and them, and start being about everyone? Every single human being.

When is giving every human being the means to reach their potential going to be our top priority?

But hey, I am not a head of state and I certainly don't know what it's like to be in that position. I am a mother though, and I have a son with a disability, and I know that most people just want what I want - to be safe, loved, at peace and hopeful for a better future.

Growing and Learning

Today, Malakai's therapist asked me if there was anything that his teachers thought he needed some extra help with, that they could address in future therapy sessions? Well... um... I hadn't actually asked... *ahem*

So, when I dropped Malakai off at creche after the therapy session I dutifully asked the teacher what I am pretty sure I should have asked before this morning (...embarrassed face...) - what areas can we work on at home and in therapy to make sure that Malakai is not lagging behind in any areas?

The answer my friends? Not much. Yes! Not much!!

According to Malakai's teacher, the only areas where he's a bit behind his typical friends is in speech (which we know already) and running (ok...).

So! I am utterly friggen pleased with my little man! He is fitting in so well and really taking part. He knows just as much as his friends do and his teacher tells me that he's actually ahead them with his ball skills.

Oh. My. Fluttering. Heart. be still...

I know, I know... speech and running. Yes, yes, yes. But these things we know - Malakai is delayed in speech, but he's using sign language so well (he knows over 150 signs and uses about 30 on a regular day-to-day basis). We know what he wants, he knows what he wants, his teachers know what he wants, so we're pretty satisfied that he's communicating, even if it's not in the traditional sense.

As for running - you should see it. Malakai runs as if he's an Olympic athlete crossing the line. Head back, arms stretched out behind him... It is too cute. However, this running-posture (for want of a better word) does not a sprinter make...

So - my son's a bit of a slow runner. I'm really not crying into my lap about that one!

What I am doing is having a little party in my heart for my beautiful boy - I am celebrating his spirit, his determination, his joy, his ability and most of all, his humble little offering of himself - in all his "wondrousness" - to his world.

You go my boy.

Just the other day I asked my husband if he thought, on the day that Malakai was diagnosed, it would ever actually be this... well... normal?

And it is. Life is life. Our son is loved as any other son is loved. There is no difference in our hearts, and there is no difference in reality. He is simply perfect - extra chromosome or not - just as he is.

Pix Fix

You'd think that for a mother, photographer, and someone who just lost every single photograph of my boys taken in the last 18 months (courtesy of my computer crashing...) I'd have been furiously taking many more pictures to fill the gap?

Mmmm?

Well... no.

As a person, I used to be very organised - all my priorities in place and colour-coded. Not anymore. No.

Besides, I often find that if I'm photographing a 'moment', I'm not really there to enjoy it...

Anyhoo - I finally took some pictures of my beloved boys this weekend and I am rather sad that Malakai is just not that into smiling for the camera anymore. In fact, as time slips through my fingers, he's becoming more demanding with what will make him smile (and laughing is even more difficult).

So, Malakai is my serious boy right now - with the very occasional smile.

Please note: Malakai does not have a skin disease - that's shaving cream... and in the last picture he's singing... aaahhh cute!

And Harlan is still my little smiler - so easy to amuse!

Jumping for Joy?

I am sitting at my dining room table, it is very quiet and I can hear the crickets singing their melodic chorus outside in my garden. The boys are asleep (for now) and hubby is at the rugby, so I am enveloped in my own wondrous company!

Not that I think I'm wondrous or anything - just that I have always been a person who simply loves to be alone, to do my own thing, to read, ruminate, clean, totter around... Not easy with two little ones under 3 years! So, whenever this happens, which is about once a month, I just relish in my alone-ness. I let it wrap me up like a big fluffy just-washed blanket.

As always, life is busy - I actually wish I had another expression, because that one is getting really old now. Hmpf! But it is what it is! I am pleased to have a new client, and the prospects are very exciting! It does however mean more work at this point - but I am okay with that.

Harlan is growing bigger and more adventurous everyday, but he's still amazingly attached to me. He seems to get severe separation anxiety and isn't very social with other little ones - shame! I think he's actually a little wary of other kids because his big brother (*ahem*) is rather brutal with him.

I am amazed at Harlan's complete focus and determination to understand how things work, how they fit, how they stack, how they fall, how they taste, how they feel, and how they break... He can busy himself for ages on simply screwing the top on and off a bottle.

Malakai, on the other hand, is going through a phase where he wants tons of input. He wants to be shown, he wants to learn and he wants an adult to be by his side. But, he's doing so well as school - he actually doesn't want to come home when I collect him in the afternoon.

The other day when I collected him, he saw me coming and quickly scooted his butt onto the collective blanket where all his friends were sitting. I called 'Malakai!' and he looked the other way! It was so funny!

Otherwise, I am having such a pain of a time disciplining Mr M - still! I just don't know if anything is sinking in... His latest is to run past Harlan and grab some hair and carry on running! Seriously! I just don't know... And he knows he's being naughty.

Also, as Malakai gets older I see both his amazing strengths and I am starting to come face-to-face with his weaknesses. I cannot believe that Malakai can read, that he understands so many signs, that he's so darn clever! He really is an incredibly bright little boy.

On the other side of the coin, we're working on 'jumping' at physio at the moment, and I catch myself thinking how strange it is... we have to teach Malakai how to do something that his cousin (who is much younger than him) can do already with no problem. And he hates it too... Where most kids literally jump for joy. Ai ai ai... I am sometimes reminded that Malakai actually does have special needs - which brings me to the next thing.

The fact that I have to be reminded that my child has special needs is testament in itself of how this journey is just so beautiful, so fulfilling, so amazing. Yes, I sometimes want to cry because my son needs to be taught how to jump, but for the most part he's just my really amazing, very clever and incredibly loving son. I love that we we are blinded by Malakai's ABILITIES!

Finally, I have found a fantastic doctor. In South Africa we only have roughly 5 paediatric neurologists, and so the wait for an appointment can be between 10 - 12 months. Luckily I discovered a newly qualified PaedNeuro and had to only wait one week - ONE WEEK - for an appointment! That is really amazing!

Anyhoo - we had a one hour session and we covered everything from birth to current day. We spoke about Malakai's development including physical, emotional, sensory, behavioural - you name it, we covered it! She was so thorough! Then, I showed her Malakai's sleep video and I held my breath. I think I have just been told so many times that I'm losing the plot that I was afraid she'd think so too.

Thank heavens she agreed that Malakai was not behaving normally in his sleep! Yay! I am not mad!

So, we now have to wait for a sleep study (any tips from other moms would be awesome) and an EEG. Once again though, not many people who do this in South Africa, so I have no idea when we're going to get an appointment. The reason we're doing an EEG is because the doctor suspects (from watching the video) that Malakai might have nocturnal epilepsy. The EEG might confirm this or it might not even pick it up (as often happens, even when epilepsy is present). However, the sleep study should also narrow things down a bit for us!

I cannot express how relieved I am that we are finally taking action and might actually have a diagnosis for Malakai's sleep issues sometime soon. He is so amazing, so gorgeous and so beautiful - imagine what he's going to be like when he's actually getting a good night's sleep? Can anyone spell 'a.n.g.e.l.'?

Anyhoo - that's us for now. Back to some awesome 'me time'!

Its been so long...

I regret to acknowledge that I have totally neglected my blog these past weeks, and I am so terribly sorry. Not only have I now got a ton of things to say (which makes for very arduous reading), but I have also lost track of my favourite blogs - the reading of which brightens my days and gives me constant hope and reflection.

By way of an attempted apology, I'll use sub-headers in this post, so that you can just skip right past anything that doesn't tickle your fancy!

Work, work, work...
I have been working my proverbial backside to the proverbial grindstone... I have a new editor and she's getting things into the kind of shape she likes them to be, which means working very hard on two week deadlines (that usually take four weeks). This has been the biggest reason why I haven't had any time for anything but work, sleep and kiddies.

Sleep, or lack thereof
The second reason for my lack of time has to do with the fact that the boys are not just waking up at night - they're starting their antics as early as 8:30pm (and they go to sleep at 7:30pm...). Now any self-respecting mother and father will know that this scenario leaves you with... well... no time whatsoever to relax, catch up on emails, watch a movie, or just vegetate on the couch with a good book. It's all work, kiddies, work, kiddies and a few much needed hours of sleep here and there.

Sleep Training
Which brings me to sleep training... aaahhh...
I have admitted to anyone who will listen that I am completely and obviously useless when it comes to sorting out my children's sleep habits - so I've brought someone in. For roughly the price of a four-star hotel per night, she comes in and is sleep training Harlan for me.
So, I've had two good night's rest and Harlan is halfway towards sleeping through, bada-bing bada-boom!

Sleep Issues
Following Harlan, the sleep trainer will move onto Malakai the with singular focus of telling me what on earth is going on with him. I want an expert (and outsider's) opinion as to whether Malakai's sleep issues are behavioural or not. Which brings me to my next point...

Munchausen by proxy syndrome (MBPS)
A condition where mothers often 'create' illnesses for their children (either by pretending or actually harming them) in order to get attention. Not a nice thing, no. But I am at the point with our family doctor where I feel like I'm carrying a big board around my neck that says "Hey, my name is Loren and I have MBPS".
We've ruled out benign joint hypermobility syndrome, we've investigated restless leg syndrome and ruled out 2 of the 3 major causes (iron deficiency and thyroid disease). And now the third, and possibly most relevant cause for restless leg syndrome in terms of Malakai's Down syndrome is a dopamine deficiency (which has been proven in Ds).
But the doctor is just not willing to take the route of treating dopamine deficiency because of the kinds of medication used, although I have read that toddlers can be given the medication if the pros far outweigh the cons (i.e. constant lack of sleep affecting ability to learn, function etc).
And, when I ask him to check Malakai's dopamine levels he looks at me like I have MBPS. And, when I look at myself, I ask that question as well - am I taking this too far? Should I just accept that Malakai will not sleep?

Well that's it for now folks - life is busy and now that we are making progress (for which I promise not to take the credit) with sleep, things just look more manageable. Sleep is an amazing thing, and prolonged lack of it can seriously turn your life grey.

Here's to getting some sleep - for ALL of us!

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!