Simply Sense-sational!

So... we've been going to Sensory Integration Therapy for 6 weeks now and I must admit having thoughts in the first few weeks along the lines of "why am I actually paying for this stuff? this woman just swings my kid around, makes him slide down ramps and sit in buckets full of beans. I can do that for free..."

But we have seen such a spurt in development with Malakai - from better balance, to greater fine motor skills, to actually saying words (real words...)! Our SI therapist said he would improve in all areas over time - and he has. And I can't believe its simply because of 'feeding' him the sensory input he needs.

In our last bi-weekly speech therapy appointment, Malakai was able to work a toy that involves pushing down a lever to get a ball released - something that we had played with previously, but without success. I mean, we demonstrated how the toy worked over 30 times and Malakai just really struggled to figure out how to push the lever down - he pulled it, pushed it sideways, hit it and the like, but couldn't seem to make his hand push it down. In our last session? First try! He got it right first time and then repeated the movement over and over again.  His speech therapist is so impressed with his development and ability to follow instruction - she's amazed that she's now able to work so much more constructively with him.

It makes sense though, if you think about it. We understand our world through our senses - if the information is not coming through strongly enough, or if it's all jumbled, then our ability to process the information (and learn from it) is limited.  When we start to 'integrate' our sensory world, then we can understand and respond easier.

I really wanted to share this news because there must be other little kiddos out there that could benefit from Sensory Integration. It helps to see a trained therapist, but if you can't find one (or can't find the time...) - here are some tips on how to 'feed' your little one a sensory diet that will help them to integrate their sensory system better - if it worked for Malakai it can work for you too!

"Young children need to absorb sensory knowledge through their skin, muscles and joints before they 'graduate' to a developmental level where they can gather information through their eyes and ears."

The following are ideas for Proprioceptive sensory input throughout your daily life:

While in the car:

• Playing with and pulling prestik
• Popping bubble wrap
• Uncurling paper clips
• Lacing rubber bands together

In the bathroom:

• Cream containers that you have to push down and squirt out
• Pouring water from big containers
• Stirring bath water clockwise and then anti-clockwise with eyes shut (one hand goes back, one forward)
• After bath - give a good firm toweling rub down, wrap child tightly in the towel, and later cream body as if giving a massage. In summer this can be done after a swim in the pool.

In the kitchen:

• Pouring water from a 2 litre container into mugs
• Peeling oranges
• Mashing potatoes

Whilst doing homework

• Sitting on a cushion or something 'wobbly'
• Squashing a squishy ball from time to time
• Use proprioceptive snacks to maintain focus and concentration

Proprioceptive Snacks

• Put these in a lunchbox to help modulate the child during the school day or during a long car journey
• Rice cakes, biltong (beef jerky), dried fruit (mango is best as it provides the most resistance), wine gums, crunchy fruits like apples, pickles, yogisips with a long straw, popcorn, carrots, liquorice strips, dried fruit rolls, cheese squeezies, pretzels, raisins.
• Peeling oranges, or make a hole in the top and squeeze and squash the juice out
• Freeze juice bottles in summer so child has to squeeze and suck the ice as it melts.

Proprioceptive activities for the mouth:

• Allow child to chew gum (if old enough), eat chewy or crunchy foods
• Sip water from a water bottle with a straw
• Drink thick liquids through a straw - the thickness of the straw and the liquid can be varied to change the degree of heavy work required
• Play mouth soccer with straws and cotton balls
• Blow bubbles in a dish of soapy water with a straw (adult supervision required)
• Blow whistles, blow up pool toys, balloons
• Eating grapes or cherries with pips - finding the pip with your tongue
• Copying funny faces and mouth shapes

Outside in the Garden:

• Roller skate / roller blade uphill
• Garden work such as: mow the lawn, rake the leaves, push the wheelbarrow, shovel sand, pulling out weeds
• Pull a friend or heavy item in a wagon
• Climbing ladders, ramps, trees, anything
• Push a friend in a wheelbarrow
• Walk around outside in the dark, looking at the stars
• Pull a wagon or sled uphill - walking backwards is best
• Piggy backs - let the child hold on himself and do all the work
• Tyre tube for walking or sitting on
• Wear a backpack around the house or garden - go on a treasure hunt collecting heavy bean bags (or bags of rice) to fill the backpack
• Tug-of-war - do this in sitting, standing and kneeling position
• Hanging from monkey bars
• Tumbling with friends
• Leap frog
• Wheelbarrow walking - hold your child's legs and see how far they can go on their hands
• Pouring - put different amounts of sand, beans or water into a cup or pitcher. Let the child pour from one container to another

In the Living Area:

• Bulldozer - two children sit in a large cardboard box and two others push the load across the floor, using their shoulders, backs, hands or feet to make it move
• Carry heavy items - baskets of blocks, groceries for mom
• Push or pull boxes with toys or a few books in it - more resistance is provided if boxes are pushed/pulled across a carpeted floor
• Fill a pillowcase with a few stuffed animals in it for weight - child can pull it up an incline or stairs
• Use the cushions from the sofa for climbing, jumping and crashing into them
• Perform household chores such as vacuuming, sweeping, carrying the laundry basket, wiping the table, washing the windows, scrubbing surfaces
• Have pillow fights
• Make a sandwich out of your child - between couch cushions
• Have a child close his eyes and 'feel' where his legs, hands, arms etc are positioned.
• Massage child's hands before he tries a difficult motor task

The following are ideas for Vestibular sensory input throughout your daily life:

Outside in the Garden:

• Rolling down a grassy hill
• Airplanes - parent lies on back and places feet on child's tummy. Child is lifted up by parent's feet and is suspended above.
• Piggy backs
• Park activities - swings, slides, merry-go-rounds, climbing
• Swinging in a blanket
• Jumping on a trampoline
• Jumping to rhythms - recite a nursery rhyme, clap your hands or beat a drum in a steady rhythmic pattern.
• Riding vehicles - trikes, bikes, scooters
• Walking on unstable surfaces - in a sandpit, suspended bridge, water bed, rocks

In the living area:

• Jumping from the bed into a parent's arms
• Jumping off a chair onto a crash pad
• Moving through obstacle courses - tunnels, ramps, balance beams, steps, sofa cushions

The following are ideas for Tactile sensory input throughout your daily life:

In the Bathroom:

• Play in bubble bath
• Swaddling - roll the child tightly in a towel which provides deep pressure
• Rub-a-dub-dub - encourage child to rub a variety of textures on his skin (oatmeal soap, shaving cream, lotion soap, loofah sponges, thick wash cloths, foam pot-scrubbers, brushes)

In the kitchen:

• Play with finger paint or use instant pudding as a finger paint
• Goop - mix maizena (corn flour) with a little water to make a past
• Cooking - mix dough with hands
• Draw in flour in a baking tray

Outside in the garden:

• Roll in the grass
• Get buried in sand
• Sand tray - fill a large box with sand, beans, rice, cornmeal or popcorn. Add a small toy such as a car
• Make a collage of various outside objects - eg leaves, stones, pine needles, dirt, sticks, acorns, pods
• Make a collage with corn, lentils, noodles, pasta, rice, tin foil, sand, cotton wool, finger paint etc

In the living area:

• Crawl through tight spaces
• Secret hideaways - supply towels, blankets, sheets, sleeping bags, down comforters, pillows etc for your child to construct a fort or hideaway under a table
• Drawing on skin - draw a design on the child's back.
• Feely box - cut a hole in the top of shoe box box. Place different objects in the box such as spools, marbles, plastic animals etc into a box. The child feels through the hole and guesses what toy she is holding.
• Craft stores and fabric stores - feathers, cotton balls, silk, raylon, netting, wool, lace etc.
• Make puppets or rag doll out of different textures
• Buttons in a bag - order the size without looking
• Clay and play dough
• Walking barefoot on bubble wrap.

This information was compiled by:
Sally Mackenzie: Hons O.T. (UCT); Hons Psych (UNISA); SI (SAISI); Dip TherMassage
Kate Bailey: Hons O.T. (UCT); Masters O.T. (WITS); SI (SAISI); NDT

A bit lost without my therapists...

I know how strange this is going to sound - but it's true... I am a bit lost when it comes to Harlan's development because he doesn't have any therapists...

With Malakai I made the conscious decision to never 'measure him up' against typically developing milestone charts. I knew that he would do things in his own time, when he was ready. I wanted to enjoy his development with wonderment and awe, without knowing if, or how, late he was.

So - I just relied on Malakai's various therapists to guide me in recognising his emerging skills, and through their guidance, I was able to work with him on these skills by devising games to play that would help him exercise emerging skills. I never looked too far ahead and I never 'ticked' anything off on a chart.

So - here I am today with Harlan and I have very little idea of what he's supposed to be doing at what stage? Not that milestones freak me out with him either - its just that I actually have no concept how and when certain things start to develop.

So here I am, a mother for the second time, reading baby books on development! It's quite funny really... and sometimes even scary. Harlan is developing at a completely different pace to Malakai, which I expected. What I didn't expect was that I would be so clueless after two years of assisting Malakai to develop all his skills. I thought I'd have it waxed. But obviously not.

I read these books and go 'whaaaat? he's supposed to be doing that already? Really?'

I can't describe accurately the feeling I have to give Harlan everything he needs, just as I did for Malakai, but without the help of experts or professionals... Almost as if I'm cheating my second child out of being his best...

Strange...?

A Sensory Diet

Like most two-year-olds, Malakai craves new experiences and also demands independence - he'll take it anyway he can get it. He's throwing tantrums like no one's business! I find it difficult to cope sometimes, because I look at him and think "where is my little boy? the happy one? the one that I was able to satisfy, just a couple of weeks ago...???"

But such is life, no?

I know that Malakai is frustrated, and for obvious reasons - we don't understand him sometimes, even with the sign language. And even if we did understand him, it just isn't acceptable to swing from the light fittings, or drink the dog's water, or smash your brother's head with a plastic golf-club... So, um, no buddy...

Mealtimes have become epic battles - Malakai is so adamant that he will only eat chips and a protein (chicken, sausage, fish etc) and NOTHING else... OK - so the chips and protein are grilled (and not fried)... but still - vegetables are now an endangered-species he is going to end up becoming a chip! I just have to remind myself that he eats well during the day (fibre, oats, fruit, yogurt etc)... But how long can we do the chip thing? I suppose I'll have to wait and find out...

I'm also convinced that a large portion of his frustration comes from the fact that he's seeking sensory input - so his Sensory Integration Therapist and I are working on a Sensory Diet for him. It's not as fancy as it sounds though... the basic idea is to give him tons and loads and friggen huge amounts of sensory input - as much as he wants...

So, we have now equipped our home with all kinds of sensory experiences that Malakai can dabble in at his own will. In December last year already, we created a sensory garden for Malakai with a sandpit, jungle gym, ball pit, and water table (which he loves). We also went shopping today and he now has a swing (...yes...he didn't have a swing at home until now...) and a kiddie-trampoline. All these things give him various sensory input - tactile as well as proprioceptive and vestibular (the two lesser known, but very important, senses).

So - little Malakai has a figurative smorgasbord of sensory stuff to keep his cravings at bay!

I really hope that at least giving him a plethora of sensory experiences will feed his curiosity a bit (or at least make him so tired that a tantrum is impossible... I can dream can't I?)

As for the other stuff - I don't think I'm alone... They're not called the 'terrible-twos' for nothing!

Sticks 'n Stones...

We all know the saying about 'sticks 'n stones can break my bones, but words will never hurt me?' I don't know who came up with that, but they were obviously on the receiving end of some harsh words.

OK - so I've written and rewritten this post a hundred times!  I just cannot find the words to adequately describe how I'm feeling... I really hope this comes out coherently!

I understand that we live in a world where 91% of people with a prenatal diagnosis of Down syndrome will abort. And because of this, I can assume that the majority of people out there consider my son, and others like him, to be a 'mistake'.

And this is where it starts - at a place where human beings are ultimately sure that a child born with Ds is a mistake.

So - how do you treat someone you consider to be a mistake? Do you ridicule them? Do you call them names? Do you consider them worthy? Do you see them as a peer or someone to be 'put up with'? Do you get to know them? Do you even see them, or is ignoring them better? Remember - this person is a 'mistake', they weren't supposed to be in the first place.

And yet - here I am (and countless parents and siblings and aunts and uncles and grandparents)... absolutely and completely in love with my son. Yes, he has Down syndrome, but he's also funny, clever, loving and adventurous.

My son is capable of everything and anything he sets his mind to - and believe me he's determined!

But how does the world view him? How will they treat him one day when he's out there without me by his side? Will they call him names? Will they respect him? Will they 'put up' with him? Will they see him... I mean really see him?

More importantly - will I be able to protect him? Will I be able to explain to him that certain people don't know any better? Will I embark on a mission to eradicate those that are disrespectful?

I just don't know right now. And that is bugging me - a lot. I don't know how to protect him, how to change to the world, how to foster understanding in a world where ignorance is rife.

Sticks 'n stones...

"V" is for Vote...

So here we are again... I have asked you all to nominate me for the SA Blog Awards and thanks to your kindness and generosity, my little blog has made it to the top 10 in my category (parenting) and the voting phase now begins!

So! I ask once again - if you feel that this blog makes a difference, adds a little to the world, or is just plain interesting - please click on the vote button on the top left column of my blog.

Keep these notes in mind:

1. You need to respond to the confirmation email that they send you - otherwise the vote doesn't count.
2. You can vote using the same email address every 24 hours - so you can vote for me more than once as long as you let 24 hours pass.

So go on - vote for me if you are moved to do so! I appreciate your time and effort!

Oh Yes  - The voting phase lasts until Midnight on the 17th of September.

Thank you everyone!

In my mind's eye...

I would say that I am definitely someone who finds it more comfortable living in my head. And I often find I miss out on life (and living every moment) because I'm somewhere inside my head, either in the past or the future. This is something I'm working on changing, if for no other reason than the fact that children live in the moment and I'd so love to be in on the same wave-length as my children - how else will I come to enjoy them and relish in their lives?

Having said this - I've always been good at imagining my life, creating an image in my mind of how I wish it could be, what I would do given the chance... Now, this could be good and it could be bad.

What's great about dreaming and creating a picture in my head is that I have a bit of road-map... directions if you will... to the place where I want to go. These days my dreams are about simplifying, creating natural spaces, treading gently on the earth. I'm dreaming about my summer vegetable patch, about a new recycling bin, about writing more. I'm dreaming about playing in the garden with Malakai and watching Harlan learn to crawl over newly-moved green lawn. I'm dreaming about cooking meals (using my own vegetables and greens) to satisfy my family's hunger and watching movies after the boys have gone to bed, cuddled on the couch with my husband. 

But I've also learned that dreaming is not always practical - it often takes up the valuable time I could have spent living! And I've learned that sometimes our dreams cannot begin to encompass what is actually in store for us. If I remember back to my pregnancy with Malakai - I very clearly had no 'dreams'. For some or other reason, for once in my life, I didn't project ideas of how being a new mother would be. Even though I'd try to imagine what my son would be like - I kept drawing a blank.

Now I know that it was because Malakai would come into our lives revealing a secret that no one knew or expected. I now know that I would never - could never - have dreamed a more beautiful dream. Malakai, and his diagnosis of Down syndrome, is the greatest gift I never knew I wanted.

Two years later, I am still sometimes dumbfounded by the path my life has taken. I cannot believe that I have been blessed so fully and so abundantly. I could not have dreamed a better dream in my mind's eye...

So, my son has taught me to live in the moment - a lesson I try to apply to my life everyday. A lesson that I find most challenging because I am so comfortable in my head... I know that nothing I dream of can compare with what I have, right here, in front of me.

One amazing husband. Two perfect boys. And an extra chromosome.

Me and the boys

A good friend of mine, Lisa Reid, is building her photography portfolio. So off we went last Friday to have our own 'mini-shoot' - just me and my boys.

Malakai and Harlan were really great - it can be difficult for little ones to be placed, entertained to 'smiling point', and have a camera in their faces for an hour... I know from my years of doing this to other families! LOL!

For me it was like a gym workout - looking good amidst the chaos of two little ones is hard work! I kid you not! And as I am usually on the other side of the lens, I was a bit uncomfortable posing for the shots, but I am soooo grateful to have some great pictures with my boys!

So other than the 'workout' and an angry black swan who tried to attack us (really... it was wierd!), it was fantastic fun!

I think Lisa did an excellent job!

Splish Splash & A Stretchy Day

I am so loving spending time with Harlan these days! I'll be honest... those first six months were a difficult time. I may not be like other moms out there... I did not cope well with Harlan's colic at all...

In fact, I think I came to terms with Malakai's diagnosis of Down syndrome easier than I came to terms with the fact that Harlan screamed for almost every waking second for the first six months of his life.  At least I could cuddle and snuggle and kiss Malakai. I felt like a mommy from the word go. With Harlan however... I felt like a complete failure in the 'cuddle-department' and those times that he was inconsolable? Well... my 'mommy-spirit' would just break.

BUT - that's all the in the past now! He is a smily, engaging, content little thing these days - just eating up all the attention he gets. Amazing! I've even managed to take some 'splish splash' bath pics (not possible until now due to severe screaming through the entire bath experience).

And then - my little stinker (Malakai)! I have written before how Malakai has sensory-seeking behaviours and I've described them to his Sensory Integration Therapist, Nadine. Well, as other moms will know - our little ones rarely (if ever) play along with us. If we say they can walk... well then they 'loose' the ability for the entire therapy session. If we say they are talking... well then they only babble through therapy. And the therapist ends up looking at us like we're slightly delusional.

Well! I am so happy to say that Malakai had a Stretchy Day at his last SI therapy session! He sometimes has these days when he continually sits on his bum and stretches his legs out in front of him (sometimes he'll even pull faces and make uncomfortable sounds). He does this every two minutes - seriously.  I told Nadine this and I think she kind of brushed it off... Until our last session. She was amazed to see how much Malakai was stretching and even suggested I send him for an EEG to rule out seizures... WHAT???

Anyway - she did joint compressions on his knees and ankles - kind of like massage for your joints (instead of your muscles) and for the rest of the day he was fine. This is great news because now I know what to do with Malakai on the next Stretchy Day.

As for why Malakai needs the extra input in his legs? Well, I'm guessing it has to do with the fact that we're only going to physio therapy once a month now (instead of once a week) because Malakai is doing so well with his gross motor skills. But that means he's not doing all the physical stuff that he used to once a week. So, I'm going to investigate maybe doing a kind of baby/toddler gymnastics or tumbling class with Malakai, just to give him the extra input in his legs (climbing, jumping etc) and maybe we'll solve the mystery of the Stretchy Days!

Read it... and weep

.... in a good way!

This is so worth a read, so grab a cup of coffee and take 10 minutes - you won't regret it!

Expect. Don't Accept

(link stolen from Stephanie from Our Daily Smiles... who stole it from Rene at My Special K's... who stole it from Michelle at Big Blueberry Eyes... don't you love the sharing power of the blog-world?)

South African Blog Awards - Nominations

I have been nominated this year again for SA Blog of Year (Best Parenting Blog Category) - last year I came third.

Currently we are in the 'nomination' phase and the top 10 nominated blogs in each category will go through to the 'voting' phase.

Please, if you feel this blog is at all an inspiring/interesting/nice place to visit... please nominate me by clicking on the 'nomination button' on the top left hand side of my blog. Please follow all the prompts and respond to the email that they will send you to confirm your nomination.

Thanks for nominating me!

PS - someone asked if the current order has anything to do with number of nominations and I must say I don't know really? I think it may just be random placing at this point (or the order in which nominations came through).

Words, Sleepless Nights & Licking the Dog

Yes... you read right!

So much has been happening around the Stow Household and I've had so little time... something I've realised - with two little boys - is not about to change anytime soon...

So - I've neglected to post about Malakai's first words, which have been making their appearance here and there of late. I suppose they're not like first steps or the first time he clapped (definite and difficult to miss) - his first words are more like cotton candy... they're wispy and fine, they disappear quickly, but they are oh so sweet...

He's been talking for a while now - in his own language!  But recently I've picked out words that he's using often and with intent, like baba, dada, mama, bird (for everything he sees), bahni/barney (he's an addict I tell you!) and his two favourites - more and no...

Other than his words, his signing has really blossomed too and he loves to go through his pack of signing cards, diligently looking at each picture and signing each one.  My favourites are the ones that he's decided need a sound effect too - like elephant (with a nasal sound), pig (with a piggy sound of course!) and bear (with a growl).  I just want to eat him up when he does these signs!!

Malakai also loves to be sung to - especially with actions and he'll try to imitate all the hand moves and he even anticipates the end of the song and gives the singer a round of applause...

As for sleepless nights - little Mr Harlan has his first tooth and is getting more so there go the nights... right out the window! I've been spoilt with Harlan because he's always been a good sleeper at night - so now I'm trying to make it through the day with sometimes only 3,5 hours sleep... sheesh!!

As for licking the dog... the culprit? Malakai of course!

We've just starting Sensory Integration Therapy because Malakai has a lot of behaviours that suggest he's seeking sensory input. He's still putting everything in his mouth (including parts of the dog!), he's throwing everything, banging everything, grinding his teeth and sometimes he'll sit on the floor, flexing his legs in front of him (really stretching them) for ages and ages - like he needs the sensation of knowing where his legs are. From what I understand, being a sensory-seeker means that he's not experiencing his world as fully as he should - almost like trying to read braille with gloves on (its possible... but not really ideal). So SI Therapy should help to integrate his senses properly, and so improve his experience of his world. I'm hoping it helps, because I would hate to experience the world as though I'm wearing a huge glove over my body.

And that (as they say) is it... for now!

Malakai's 2nd Birthday Party

Malakai's 2nd birthday party went off without a hitch - the theme? "On the Farm" because Malakai just loves singing (and signing) along to 'old MacDonald'. I really had a lot of fun with the theme and even sewed the table cloths (made from red gingham and blue denim). Last year I was working three jobs, so I had very little time to plan his first birthday party - so this year I had so much more time and put in so much more effort.

We are so thankful for everyone who came along to celebrate with us - Malakai is our beautiful boy and the day of his birth will forever signify the day our Life-Paths changed forever (in the very best way!).

If you missed it, here is my letter to Malakai for his special day.

Tomorrow

Two years ago... I cannot believe it has been that long... or this short...

It feels as though you've been part of my life forever - and perhaps you have.

For two years I've been blessed by your smiles, your laughs, your love. For two years you've stolen my heart, my love, my everything. For two years we've grown together, and you've become part of everything in my life - my decisions, my thoughts, my prayers, my hopes.

For two years we've travelled 'the road less trodden', side by side - and you've shown me that life is perfect, we are blessed, and that every moment counts.

You are my beauty, like a sunrise. You are my heart beat, my breath, my food, my water.

I love you Malakai - more than I ever thought I could love another person.

Happy birthday little big man. Mommy is very very proud of you and I love you with all my heart.

Pass me the butternut...?

We started Harlan on solids with cereal for the last 4 weeks and he LOVES it to bits. This last Monday I introduced butternut at his evening feed and this was his response... I doubt he would describe butternut as 'delightful' at this stage.

Shame!!

Plettenberg Bay

So... my dear little blog, you may be wondering where I've been for a whole month? Well, I can't explain the first two weeks of July (other than the fact that I just didn't get around to updating). But I have a perfectly good explanation for the second two weeks - Holiday!!

We went down to Plettenberg Bay in the Cape for two weeks and thoroughly enjoyed ourselves - the sand, the sea, the kids, loads of interesting places to visit - we had a really great time.

Here are some pics (I feel quite bad that they are almost solely of Malakai and not Harlan - but I suppose Malakai is doing things that I just have to capture on camera!)

Mommy & Malakai

All my children and the things we did

Malakai on the beach

Malakai and aunty Sheri

Malakai and Dada on the beach

More of Malakai!

This weekend heralds Malakai's second birthday - I cannot believe my little man is almost-very-nearly two years old. I will be sure to update with pictures of the party (theme: oink! moo! baa!).