A quote

A friend of mine gave me a card when Owen was born it had this quote on it

"common characteristics observed in people with Down syndrome: natural spontaneity, genuine warmth, penetrating clarity in relating to other people, gentleness, patience and tolerance, complete honesty and the ability to engage in the unfetted enjoyment of life's gifts"

I don't know where this quote comes from, but when I found the card again the other day I smiled, remembering the comfort it brought me in the weeks after Owens diagnosis. Thanks Helen!

Medical bullying

I can't figure out what to say about this this article .......I just know it could all too easily have been my story. Given the vulnerable state a pregnant woman finds herself in when confronted by medical bullying, given no time to think, given no time to consider or investigate the possibilities of
a life worth living

The Project - Video

The Project - Video last night there was a story on Down Syndrome on an evening show after the news, my stomach was in knots before it came on, I was nervous, excited and a more than a little worried about what it would say about my "family". I didn't need to worry and the beautiful words from Gerard ODwyer are still in my ears, I hope you all can see it, the story starts at 6.30 mark.

Sounds of summer

Today we heard a cicada sing. We wait for this every year it, is the signal that summer has finally arrived.

Speech, play and therapy

Owen doesn't receive much formal therapy, he is currently off the OT list until preschool, he is off the PT list since he began walking, so all that is left is ST and with her current workload she has been seeing him for 1 hour every 3 months, she usually gives us some homework to do, at the moment she is introducing Owen to the Nuffield dyspraxia cards.

He has obvious dyspraxic tendencies e.g. We hear him say a new word or sound once and then never hear it again, or he might repeat a sound or word copying us a few turns but then he stops and can't restart again, he will have a sound down perfect and then for some reason change it -he went from being able to say an "s"sound for weeks then a few days ago he couldnt say it at all instead he would say "ee" (both sounds have the same mouth shape but tounge in diff positions and finally he still coughs when he drinks water, not every time but most, it's not a choking cough more a clearing of the throat kind of sound. but on the positive he is making huge progress with his speech after his ear tubes went in and last week he had a hearing test which for the first time in his life he PASSED! Which just confirms what I already knew - his hearing has been shithouse!

I used to stress so much about how much therapy other kids have especially when I have read some kids can have like hours of therapy a week.I know that what Owen formally gets isn't enough, so I do do some at home, like those Nuffield cards their just salt and peppered through our week, after lunch one day, sitting on the toilet another day (oh he finally graduated to the big loo over that icky potty -hooray). But the only thing he does daily is the Special Words app now that we have the iPad, I have added a bunch of personalized images and cards to the program this week and he loves it.

So I console myself that just being a kid life is full of "therapy" moments, if you take the time to make them and they don't have to be sit down formal sessions, when we were out in the backyard a few days ago and noticed that our garden had sprung bunches of thistles, Owen was so delighted (and delightful) as he went from thistle to thistle, some needed a gentle puff of air and others need huffing and puffing to get those little parachutes with their seed to float off the stem. Watching him do this I realised that what he was doing was great for breath control and lip puckering,(tick ST off the list for the day -yahoo). P.s sorry all these paragraphs have all run together making it hard to read for some reason blogger won't accept my spaces between?

To Nap too Dream

Cutting out the day time nap isn't working out so well

I was in the kitchen and came back to find Cy passed out on the lounge it was 4pm and nothing would wake him he was out cold for an hour, of course getting him to sleep last night took for ever !

Daily ritual

Every morning Owen checks our chooks and then toddles off to the get them some food, it is such a simple thing but it is still makes my heart smile, I know you Ds mummas will understand :)

hearing talking reading

So its been 4 weeks since Owen had his ear tubes put in and this time we noticed a difference within 2 days, with him trying new sounds and his attentiveness, it was almost painful to see, it made us realise just how poor his hearing had been in the months before the operation. In the last week we have noticed Owen repeating words we say, although its not clear words yet but definately he is getting the inflection right or the syllables right - music to our ears !


Also we have had an iPad for a week today - we got it through some therapy funding that became avaliable, (which involved a mile of paperwork but so worth it ). It has been amazing to watch Owen learn to use the iPad. He and Cy sat together and without any prompting from me they worked out together how to use the touch screen. I am now on the look out for good apps for Owey.


I already had my eye on the Special Words App based on resources from Down Syndrome Education International. I had always meant to download, print and laminate the resource pack from them but never got around to it (just too many steps involved there!). So this app was perfect for us.


The app is good it starts out with matching pictures to pictures, then words to pictures then word to word. Owen has been sight reading words from Your Baby Can Read DVD's but has been able to transfer that knowledge to this app and what is most exciting for me is hearing him trying to say the words! Visuals are really important for Owey, somehow it really helps to short circuit his dyspraxic tendancies so we have been hearing lots of new word attempts using this app. Anyway here he is rock'n it....

Return from Brisbane

Back from Brisbane a little worse for wear, we had a slow trip this time, more stops, more traffic, generally things seemed to drag especially on the way back gettting out of the city was a so tedious, I have forgotten what peak hour can be like. So it took 7 hours to get home yesterday and we are all tired and Cy seems to have picked up a tummy bug.......

But the good new is Wow the podiatrist is stoked with both boys progress since seeing her 3 months ago ! She measured the boys hip, knee and ankle flexability and they had all improved - (both boys are hyper mobile)- Cy is even in the normal range now - an improvement of between 20 and 30 degrees. He still needs to wear his night splint but there has also been big improvement in his reflexes in his right foot.

She is very happy with the way Owen is using his legs and body overall and she can see he is engaging the right muscles to do the job - which means he will develop as normal-a-gait as possible this is important as it reduces the wear and tear on the joints which means he can stay active as a adult.

Anyway we had a great time in Brisbane both boys LOVE trains so rather than drive into Museum we decided to go in by train

Waiting at the station

Mr Cheese is so excited about catching a real train

Owey eventually won us over and we got him out of the stroller, by the time the train arrived he had made friends with everyone on the platform, waving, blowing kisses and being cute

So we get off at the Museum stop, to see a huge sign draped over the building CLOSED for Reno's ptbbbbbbtttttt.

So we strolled along for a while and found this fantastic water park, we didn't bring bathers but that didn't stop us, or the other 3 families that striped our kids and let them run round exploring (I mean cause really, their clothes would have got wet otherwise - you just can't keep the kids out of this water park) and the boys thought it was fantastic.

Then we had some lunch and the boys found this little car out the front of a lollie shop.
I couldn't help but put $2 in

Then it was back to the train station but poor little Owey had crashed by the time we got to the platform

The cosy little BandB we stayed at was perfect and we manged to relax and enjoy it, in 4 months time we have to back to the podiatrist it will be Febuary and Stink'n hot in Brisbane by then so another visit to the water park will be on the agenda, for sure.

Gobbeldygook to you?

For all the joy and delightfulness, the surprises and the laughter sometimes, sometimes I wonder if I am fooling myself.

There have been a couple of moments this past week when Owen just looks at me when I ask him to do something, granted they have all been new tasks for him - when I realise he doesn't' understand what I am asking, I have to guide, hand over hand and show him what I want him to do. Its all simple stuff like - put your cup in the sink - that kind of thing - and he doesn't' get it.

Then I make excuses - like he probably doesn't even know what the sink is - just that I am chained to it for part of the day (we don't have a "real" dishwasher).

And I think I have been upping-the-anti lately, I am expecting more of him, but maybe I am expecting too much and I have to slow down a little, take it step by step. Its just he seems old enough and clever enough in many respects to understand and yet if its new it just doesn't click CRUNNNNCCCCCCH everything comes to a screaming halt. I am afraid, its the intellectual disability thing again, what does it mean for MY SON.

I guess on the positive side he does catch on quickly once shown/guided on how to do something new - he puts all his dirty tissues and wet nappies in the bin when I ask him to and has been doing that for ages. But its a bit like living with someone who doesn't understand English, they are perfectly capable of understanding what to do once shown but if you just gave them verbal direction alone they are lost.

We dont' know any kids with DS under the age of 11 here, so I don't know if this is a normal thing for our kids, I want to know its normal but I am terrified its not !

Ahhh, sometimes this ride is just like a wild roller coaster.

Anyway I don't' want this to sound like I am not enjoying Owen at the moment because I am he is just so delightful or that I am struck down with fear about intellectual disability because I am not, I know it is part of his life, of our lives. But when he doesn't understand, like I think he should, it is like a sharp reminder of it and I would be lying if I said it didn't hurt or worry me.

Tomorrow we are going do the 5.5hour trip up to Brisbane to see the orthopedic podiatrist for a review of the boys orthotics and Cys night splint. Col found this cool looking bed and breakfast to stay in, so it will be like a mini break for us 2 nights away.

Cy has finished his course of antibiotics yesterday but Owen is still going on the Uber ones - we see the ENT surgeon here in Armidale on Thursday for the post op review so I have my fingers crossed that both boys will be well, things are looking good right now and it is obvious that both are hearing so much better. Yahoo didgeridoo!

The shops

We went to the shops yesterday - I am always down there - Owen loves the supermarket -it where all his fans are - or at least he thinks so. He waves and throws kisses and cheers for nearly everyone and he has become quite a celebrity with the women that work there. Every morning as I get him dressed he will sign "shops" and "car" over and over or "Mel" his family daycarer - don't know whats wrong with my company and staying home !!! Anyway, so we are down at the supermarket yesterday and we have done our shopping and I am putting Owen back in his car seat when he frantically starts saying "ooo" oooo" and signing something I didn't recognise at the time and then he sayes and signs " Uh oh" and points to something outside of the car and there laying on the ground is one of his shoes ! He was telling me his shoe had come off !!!! I was so proud of him ! I hadn't noticed and would have driven off with out it if he hadn't told me !!!! This kid is growing up !

More Uber biotics

Cy complained of a sore ear yesterday afternoon and then proceeded to throw up everywhere. We took him to a doctor who said his ear drums are very red and he needs antibiotics. He threw up all over me and the bathroom after getting home from the doctors, because it is a public holiday here no chemist was open to get the antibiotic so we had to wait until this morning. We dosed him up with Painstop (a painkiller with codeine) and put him to bed for the night, he slept through till morning.
When he got up he came in to our bedroom and asked me "what's in my ear?" and I said "you have tubes in your ears to let the air in so you can hear better" and he said "no I have juice".... WTH !!!!!!!!Gross, but he has fluid leaking out his left ear, its just kinda oozing out. As soon as the chemist opened this morning we were there for the prescription.

So Cy is now on an antibiotic its not as Uber as Owens but stronger than normal. Urgghhh, we also bought a new bottle of probiotic and an extra large tub of yogurt.

Postive news is that Owen seems to be on the improve and is noticably trying to talk more/clearer !!! (so exciting) and Cy hasn't thrown up since last night. Yahoo.

ENT twice

On Monday we headed to Tamworth about 120kms from home for ENT surgery for both Owen and Cy both got Ear Tubes (grommetts) and Cy also had his adenoids out. It is always so hard handing your child over for surgery and even worse having to do it for 2 children on the same day.

Owen went in first and did so well in his recovery. His ear canals are so tiny that the surgeon traumatised them putting the tubes in, so his left ear had quite a bit of blood coming out of it. He had lots of glue in both ears and infection which needs ear drops for the next 5 days - and to say putting the ear drops in is traumatic is an understatement - the Hulk returns !

But to top it off I get a phone call today saying that a swab taken at the time of surgery shows 3 different types of bacteria (we aren't that grotty are we???) and he needs an Uber strength antibiotic to knock them off, seems my boy has been putting up with a chronic sinus infection. Don't know how I am going to get an antibiotic into him - he HATES any kind of liquid medication and I have to hold him down just to give him paracetamol, Cy on the other hand is no problem with medicines which is lucky because his recovery was exhausting, painful and upsetting. My middle boy is so sensitive and once the drugs from the op wore off - it was on ! He bellowed and screamed and coughed and cried, till I ended up yelling at him, I was terrified that he was going to start haemorraging.

Finally and although we were advised that paracetamol would be enough for pain relief I sent Col out to get something stronger - 30 minutes after taking it Cy was sitting up in bed watching Iceage and giggling away at Sid - quite stoned but whatever ! Crisis averted. We stayed overnight in Tamworth in case of bleeding - so we stayed in a hotel it was a rough night between worrying about the bleeding from Owens ear and worrying Cy might start bleeding and trying to keep the pain medication up to him so that he (we) got some rest. In the morning it seemed everything had settled and we drove home Monday afternoon, exhausted.

Things are settled now -3 days after the surgery and I can tell already that Cy and Owen are hearing better but Cy still sounds like a cigar smoking Tweety Bird.

Next on the list of appointments is a review of the boys orthotics and Cys night splint - a 5.5 hour drive to Brisbane for that one - in 10 days time.

In the meantime there is painting to be done and train lines to build .........

Power Play

It seems like every. single. thing. is a power struggle with O right now. He wants to do so many things for himself and growls and swipes at me if I try to help him.

Most of these power struggles have to do with things that are not negotiable like for instance brushing his teeth. Usually I would take turns with him brushing -my turn to brush properly and then his turn -munching the toothbrush. Lately its become a wrestling match complete with growling and writhing, with my legs wrapped over his legs to hold him still, .... think WWF on the floor of our bathroom. Its all such a put on, because as soon as I am done with doing it properly and offer the brush for his turn he stops instantly, snatches the toothbrush and goes over to the shower screen where he can see his reflection to laugh at himself while munching the toothbrush, while I collapse in exhaustion from wrestling his 14 kg Hulk (Hogan) body, seriously this kid is uber strong. So, with teeth done its onto brushing his hair and getting clothes on, all with variations of the brushing teeth performance.

Hulk, lucky I love you and sometimes you are gentle and thoughtful, like when....you stack blocks !?

Just cause

Cause its my birthdaycooked up a batch of Deadly Choc Cupcakes with cream (of course)

SO GOOD

Potty Saga

Things were going great nearing 3 weeks without a poopy accident. Then O went to his family day carer for the day and each time he went near the kitchen table she thought he was signing toilet and kept taking him and sitting him on the potty with no result, we worked out later he was actually signing yogurt!! Then when he actually did sign toilet she missed it (or ignored it (not sure) and he pooed in his nappy. And the next day he was at home with me and he went in his nappy without telling me (first time for over a month so that was so disappointing).

The following few days at home we got back on track, then back to family day care this Monday and another poopy nappy - and the following day at home 2 pooey nappies. Its like, just because of the confusion at daycare he has lost his groove for toilet training. So to say I am disappointed is an understatement.

So today he signed toilet and I took him along with success, so all is not lost - but later he did another in his nappy - what the ??. With my other kids once they had, had no accidents for a couple weeks they never looked back, so this is a new scenario for me - one step forward and one back.

I feel like with Owen there is alot of pressure to get things right all the time because I think he can get confused or start a habit easily. It seems to me if he starts right, things seem to keep going along right. But all it can take is one accident or unintended action and things go a bit pear shaped, eventually we get back on track but it takes consistency over a long period of time and sometimes some creative thinking to break the habit. Sadly at the moment I feel like I don't have energy for it, and since it is at daycare where the problem starts/is I am not even sure what to do about it. Frustrating.....

Littlest Jedi

You know, the very ordinary, normal, funny, family moments are happening more and more these days.

On the day of diagnosis it was these moments I thought lost, or more like stolen, like we had been robbed of a normal family life.

But we have found our ordinary again, infact we never really lost it at all and its these ordinary family moments that make my heart smile most, its like life and hope are returning to my heart.

After dinner last night Randall dressed up Owen as a Jedi - complete with wooden spoon light saber.

ahhh just another "ordinary" moment to melt a mothers heart

Potty Update

Owen has been doing #2's in the potty and I think it has been about 2 weeks without accident !

If he could, he would take himself to the toilet, we often find him signing Toilet (with serious urgency) as he toddles his way across the lounge room into the hall to the bathroom door. Once he is at the bathroom door he's stuck because he can't actually reach the door knob to open the door. (we have to keep it shut to keep him from playing in there) Even if he could get it open, he has zero skills in taking his pants and nappy off, so I do that part, and sit him on the throne.

He HATES the real toilet, I don't know, maybe I pinched his leg between the toilet seat and the toddler insert once, because he certainly acts like the thing is going to bite him, he squeals if I try to put him on it and stiffens his body so I cant bend him to sit on it.

So much to my disgust I have him using the dinky little potty (cause I really think pottys are ick), he loves the little sea creatures painted on the front and his feet are on the floor giving him support which I do think helps him feel stable and safe not like the nasty biting toilet.

His reward for going to the potty?? To push the button on the toilet - once I have emptied the pottys load (shudder ick) into it.

Here he is caught in the act. .... of pushing the button

Finally on water

After mixing fruit puree in water for what must be a year, I was so worried about O's teeth I thought I should try some thickeners instead and I dont' know if it was just coincidence but Owen seemed to have stomach pains by the end of the day when he was just having thickened water, so I decided to ditch it and just try straight water and to my surprise he has done really well with it, still a bit of coughing every now and again but nothing like before where he coughed with every mouth full.

What I notice is this if I offer him a drink he almost always ends up coughing but if I just let him drink when he wants he deals with it fine, spoke with the SP about this and she said its sounds like dyspraxia - if he has to conciously think about drinking (when I offer it to him) it doesn't' happen in a fluent way, if he is not thinking about it and just guzzles it down because he is thirsty he does great.

With practice, over the past 2 weeks Owen has gotten better and better with drinking water through a straw - good riddance to those bloody fruit purees and to thickener and cheers to healthly teeth too !

Brisvegas for orthotics

We got back a few days ago from Brisbane its quite a drive from Armidale and with 2 toddlers and a teenager (squeezed into the backseat) I was prepared for it to be hellish ...but it turned out to be a great drive, we did it in 6 hours (a new record for us).

We went up to Brisbane to see a pediatric podiatrist because Cyrus has trouble with running, (he falls over when he gets speed up), he can't jump or balance on one leg. The background is that all Cys gross motor milestones have been delayed (walked at 19.5 months) and he didn't start to stringing words together until he was 33 months old but within 4 months had completely caught up to his peers, he has been alot of work this kid, lots of worry, but I should add he is so delightful and full of imagination, good humour and caring. I have been taking him to a Bowen Therapist for a couple of years now and at our last visit she thought there was something bony rather than muscular wrong with Cy which has led us to see this podiatrist in Brisvegas hoping she may have some solutions.

Before seeing the Podiatrist Cy had to have full leg xrays - this is the lead apron I had to wear, Cy said it was too heavy.

She was amazing and worked out very quickly what was wrong and how to improve things.

She explained that messages from the feet or more specifically the bones in the feet communicate to the brain where you are on the ground and the brain tells the body which muscles to use to keep balanced or move forward and if the bones of the feet are not in the right position then the information is a bit garbled and the brain engages the wrong muscles to keep balanced or move, for Cy this means he uses his hamstrings to walk ( just try it - its really hard work, and this means he has to lock his abs (his abs are rock hard), he also has kept the baby reflexes of curling over his toes if you tickle his feet - the proper reflex should be a pulling up and away motion.

I was so impressed with her that I hoped she could look at Owen too - as luck would have it someone had rung to cancel their appointment that day, and so the podiatrist saw Owen that afternoon. She said Owen is doing great, his feet are in much better organisation than Cy's, he has better tone than Cy (!!!) and he is just as hypermobile as Cy !! so there you go its not all the 47th Chromosome - its in the family genes. So Owen got a set of orthotics as well as Cy, but Cy also has night splints to wear, the splints will change those reflexes in his feet to normal (I know... I have trouble believing it too but she sayes it works).

With it being such a huge trip we decided to throw in some fun things in too after all we don't visit the big city very often.

The Museum -This dinosaur has the best name - Muttaburrasaurus, Cy sayes it "Nuttamurrasaurus"

It was sleeting at home, but in Brisbane we had warm sunshine the boys stripped off and paddled

These women from Vanuatu were doing a demo of traditional Water Drumming it sounded amazing and their voices a beautiful harmony, I love stumbling on things like this, that is what I love about going to the city.

Cy was facinated with this cement sheep out the front of a cafe

Cy loves trains he is Thomas mad, so we took a trip to the railway museum ...the things you do for your kids !

I think Owen felt a bit like I did about the Rail museum it was all a bit "ho hum"

The babbler

I have had such ups and downs the past week.

Earlier in the week I felt angry and sad that I may never have an adult conversation with Owen, its all come about because recent long and "adult like" conversations I am having with Randall (13.5yrs) it is a new level of conversation for us, he totally gets adult style humour (and is so quick witted) I am loving our conversation, but after everyone had gone to bed last night, I broke down and cried , I felt so angry, such a sense of frustration and loss. I know I am meant to be positive and have high expectations of O, but sometimes I just wonder if I am sugar-coating it, I mean REALLY what can I expect from our future conversations, will I always be talking to him like a child ? It made me feel so sad and I thumped the cushions on the couch a few times before I realised I was grieving over something that may or may not happen but why grieve over it now when he is just 2 years old. I have to put my blinkers on and just look what I have with him right now.

And what I have with Owen right now is good.

He has changed again this week, walking 95% of the time and he has started babbling again ! He hasn't babbled for over a year and it is so wonderful to hear him say Lalalalalalal, ba,ba,ba,ba Mamamamamama (first time ever saying Ma ! not to me though but so great to hear him say it) I don't know if it was due to shitty hearing or dyspraxia (thats what the SP thinking it could be) but he stopped babbling around the time he was 1 year old before that he was a prolific babbler and it sounded so musical. He got ear tubes at 18 months but babbling didn't return but then he did start saying some words so I thought the babbling was gone for good. It has been so lovely to have babbling conversations with him the past few days and now I know he can say the Maamamama sound -I knew he was holding out on me.!!

He has also changed -grown in his personality, he is more confident and is a bit of a stirrer, it has been so exciting to see these new changes, just when things seemed to be in a holding pattern, he has burst through once again and changed the game and I don't mind a bit.

lost in translation

Oh!! Kim let me know my last post - Jinx was lost in translation: a nappy is what we call a diaper but Crappy Diapers doesn't have the same ring to it as Crappy Nappies... what about Dirty Diapers instead. Owens naps are fine!! I even have Cy (3.5 years) having naps at the same time just to get 1.5 hours off a day, works out great for everyone.

Jinx

A couple of crappy nappies over the past few days :( . Knew I shouldn't have posted about it. LOL

Where's Poo?

In the early days of Googling DS I found a site that said kids with DS aren't toilet trained until 9 years of age - it was one of those shutdown the computer and have cry moments, I thought I couldn't handle it. Then after some thought I came to terms with the idea that he might not be toilet trained till then, I could handle it, my eldest didn't get night time trained until he was 6 years old and we just dealt with it in a matter of fact way and with dignity.

So ......................................to yesterday morning........................... Owen made a grunting sound and I knew number 2's were on the way, so I signed "poo" and "toilet", grabbed him by the hand and raced him the the bathroom, he sat down and signed bubble (there are bubbles printed on the potty) then did his business and signed "poo" "where??" and looked between his legs LOL. I was hooting and squealing, for him so happy:). And this morning I was sleeping in (Owen was awake at 5 am) but he signed "poo" to his Dad and gave a grunt, so Dad whisked him off the the bathroom and Success again !! (he repeated yesterdays "poo" where" signs and looked between his legs too). I dont' know the proper name for this technique ? maybe parent-led toileting ? but I have used it with my older boys and both of them mastered number 2's before 1's, then it took one of the boys 8 months to conquer number 1 and the other took just a week ! So for now I just need to get Owen telling me consistently he needs to go poo and get him there in time, I feel like its so fragile right now and I really really have to pay attention to his cues or we will miss the opportunity to knock over this (major) milestone.

Winter Solstice

Our school celebrated the Winter Solstice last Wednesday with a lantern walk, it was a beautiful and very cold night. The boys LOVED their lanterns, which we (actually I) made over the past few weeks of playgroup and at the end of the night each child received a gift - a Dahlia bulb to plant in the garden to wait for spring.

Mister "I have a flame!" manic grin

I can take it from here Dad !

(this is the only photo of Owen that wasnt blurry I think my old olympus is on its way out.

POP up outta the hole

I am SO out of the hole (re my last post)!!!

Thanks for the love and understanding of my friends.

Sometimes I think I live my life like its a sprint race, I think if I just stretch that little bit further, I will get to cross the finish line and THEN I can relax and rest. But I am coming to realise that life is more like a marathon and along that 42km run you have to pace yourself and you have to take some sustenance along the way or else you are really headed for trouble. My sustenance is provided by connecting with friends both those who KNOW DS and those who don't. This week has been connection week for me I've slowed down had lots of cups of tea, emails and love from friends, I feel good again, rested, calm and ready to continue.

And I thought I would add a video of Owen and I sharing a book, this is the one he learnt his colours from, words are few but through signing we have real communication.

The Hole

I have fallen in a hole or The Hole this weekend.


I suddenly lost faith.


The future was overwhelming.


I felt regret.


I thought of nothing but the struggles ahead.


I could see all the 'differences'......... and I hurt.

I have not had such a difficult time really since the early days. I thought I was past all these feelings and thoughts, so I was disappointed to fall so hard all over again.

The weather has been bleak these past 3 days and that feeling was certainly reflected within me.

Pick a Color

So we had a therapy visit yesterday its been 5 months since the last time we saw them.
Owen Finally stacked those (#*%$ blasted rings for the first time - with ease, like he had done it 100 times before. His hands are tiny and it has always been difficult for him to grasp those thick, slippery suckers, but yesterday he blitzed it.

They asked what had we been working on and I said with honesty - "nothing" then feeling embarrassed I added "ummm I have been showing him the signs for different colours ! (phew relief, yes I had been "working") But then the therapist said well we don't expect colour differentiation until much later, do you think he knows any of the colours? Well honestly I have never tested him all I have been doing is showing him him the signs of the colours when we look at books - green grass, red flower etc. So the therapist holds up two of those pesky stacking rings, a red and a green ring and sayes to Owen "red where is the red ring" and he reaches out and chooses the right colour ! (but I am thinking okay there is a 50/50 chance that he will get it right. She does this with different coloured rings 3 different times and he gets it right 3 times ! And the therapist sayes "he knows his colours" and I can tell she is a bit shocked.

But in the back of my mind I am thinking this could just be luck) so when she left, Owen was playing with some toy cars so I hold up two, a red and a blue and ask him where is the blue car and he looks at both carefully and I can see him thinking, and then he reaches out and grabs the blue car and now I know for sure. He does know his colours because I have seen it in his eyes, I have seen his understanding. And I feel humbled that I even doubted him.

Owen you are Rockin it baby.

Stereo- type

Lets face it sometimes the Down Syndrome Stereotype fits and you just gotta wear it.When O was born many well meaning people said "oh They are such loving children" nope Owen is not, he is your typical 2 year old he will give it when he wants but is far too busy most of the time to bother and we also heard "oh They just love music" and this is the stereotype that fits Owen like a glove!

This kid LOVES music, he asks me to sing to him all day long and if I am not singing then there is a childrens music CD on. I can think of aleast 5 musical toys that he has worn out the batteries in, my other 2 have ever done this to even one of their musical toys. The latest victim is Wags the Dog who gets played incessently if the said Childrens music CD or I am not performing .
Owens idea of heaven is book/music CD set. Currently The Golden Kangaroo is the soundtrack to our lives (and if you don't know it, think yourself lucky) its on in the house and in the car, he asks for it to be played over and over. I dream about it, I wake up signing it, I try to ignore his "Kangaroo" noise but he just goes on and on about it and ends up lying beneath the stereo whinging and signing turn it on, turn it on, until I relent. Any suggestions for favourite childrens music CD's prefferably ones that don't drive a parent crazy with it on a loop gratefully accepted.

Heart Day

27th of May 2009

My little angel, they took you away from me today to fix your heart.
I handed you over and when I saw you again I didn't recognise you, you were so swollen and covered in tubes and wires and I held my breath because I could tell you were not with us. Death sat quietly waiting in your corner of the room and I realised that Death was not a cruel malevolent spirit waiting to snatch you away, but instead is a silent watcher, and it was waiting for YOU to make a decision whether to live or to pass, and if you decided to pass then Death would sweep you up gently and guide you there.

On the third day after the operation I walked back into PCIU after a having a break and nothing had changed, you were still on life support, still on the same drugs, still had a pacemaker telling your heart when to beat but I could tell just by looking at you that you had decided to LIVE, you were BACK and death had left your corner of the room because it was not needed anymore. From that moment you went from strength to strength and slowly but surely the tubes came out, the medication decreased and the pacemaker and oxygen were finally removed.

Our first cuddle with your mended heart (one happy mumma)

27th of May 2010
One year later and you were THRIVING we call you Chubb-Nut because you are so pudgey and squidgy and fat.

(nibbling on your heart beads; one bead = one procedure )

27th of May 2011
Here you are today, just amazing, what an incredible gift those surgeons gave us that day 2 years ago, an opportunity to see you grow and experience the joy you bring to our family. I love you sweet heart and thankyou for the choice you made.

(your so proud of your heart beads !!)

Loving your life !

Myofacial Trainer and the Calender

I decided to hit the dentist with all 3 boys in the same week - which was efficient but mad. All of Owens teeth are finally through with the upper incisors finally pushing their way into place! Now he can't use teething as a reason for being in a Funk !!!

The dentist would like to start Owen on an Infant Myofacial Trainer in about 6 months time to expand his palate, straighten the alignment of his bottom teeth which are crowded and to get his tongue to sit up behind his front teeth rather flopping onto his bottom jaw. He doesn't' have a tongue thrust problem but he does have an open mouth position which the dentist sayes can lead to mouth breathing (he breathes through his nose at the moment). Mouth breathing is not great because it narrows the face and palate and Owens palate is very high already so that there is no "house" for the tongue. The trainer is meant to train the tongue and widen the jaw and palate and develop good breathing habits. The dentist has used it on their own child with great results, so I am willing to give it a try.

Also been very busy with my older 2 boys lately also with medical things nothing too huge but nevertheless worrying and time consuming. I am living by my wall calender at the moment, I can't function without it, I have to check it everyday to see what's on and I can't make follow up appointments unless I am at home and standing in front of it just so I don't double book. Roll on June - when it looks like things finally start to settle down..............................

Another first !

One thing about having a child with Down Syndrome is the beautiful surprises along the way, I'm talking about those first steps, the first pull to stand, the first sign, the first word, I mean they shouldn't come as a surprise but with Owen these things seem to come out of the blue - we go along for weeks/months with no change and then suddenly he surprises us with what he can do.

Owen gave me a surprise yesterday - I thought I mis-heard at first ....so I got it on tape.



His first song !

The best cuddles

*more of a flop than a cuddle - but still they feel SO good

Happy ears

We travelled last week to get Owens hearing tested and he passed !!

Actually its better than that he actually registered as hearing low frequency sound for the for time ever - even the audiologist was excited !

Cardiology Review

Okay so its nearly 2 years since Owey's surgery and he has just had his cardiology review - the cardiologist flys up here from Sydney - great not to have to travel for this one.

So we meet with the guy "Dr I." and go inside the consulting room and Owen is all over the place, crawling round and round the room and then standing at the door and saying Bye Bye over and over again then round and round the room again - probably looking for another exit ?!

Meanwhile Dr I. asks me how he is going "he seems very active!!" he sayes looking over at him, and I say "yes well it is his nap time (its 12.15pm, the only appointment I could get) he's getting ratty".

"Do you have any concerns about his growth" he asks and I say "well he was on the 75th percentile on the normal charts at 1 year old and now at 2 years old he has gone down to the 15th (again on the normal charts) should I be worried?" and he sayes "what about on the DS charts" and I say "he has gone from the 95th to the 75th", "well thats not a concern" he sayes. But then he sayes "Anyway you don't want him big" and I say UGH?, sorry, why not??. "You don't want a big teenage boy with Down Syndrome they are difficult to handle" my heart grows suddenly heavy "Parents say oh if only I had known what it meant to have big child with DS" and my heart is on the floor and I don't know what to say because he has painted a picture of my future I don't want to look at.

Then he goes on digging himself in deeper - "Anyway look at you, you are not big, you are medium height and thin, not like some of the mothers that come in here".

At this stage I start to boil over BUT he has me, right where he wants me, because he still has to do the ECHO and he still has to give me the good or bad news on Owens heart and so instead of giving him a piece of my mind I just sit there politely/anxiously waiting for him to start the testing.

I sing to Owen during the ECHO and he lays quietly listening to me and at the end of the check DR I. tells me everything is great and Owen won't need another check up till he is 4 years old. Owen gets off the examination table and starts doing laps again. Dr I has one last comment as we are leaving "Glad I'm not sitting next to him on the flight home"! and I shrug my shoulders at him because I just don't want to humour the man.

Why people like this, so called professionals feel they have any right to make judgements on my family, on Owen, myself and my community (implying that other mothers are overweight) makes me really mad, but I feel so disarmed in front of them because I need their "expertise" to help my son.

Anyway needless to say I so glad that I don't have to see that Dr again for a few years!

Is he walking yet?

Is WHEN a person with DS walks important?

Or rather, my question is - If they walk "early" does that mean that their cognitive ability is better? Our Doctor told me it doesn't matter when Owen walks it doesn't indicate anything about his cognitive ability. But as a parent I think it would have been somewhat reassuring if Owen had walked within a typical time frame, say around 18 months as some kids with DS do (and some even earlier). And I found when that time frame slipped away and steps were still a long way off that it hurt me, I was filled with self doubt (had I done enough, the right things blah blah blah). I had dreamed of him walking around the toddler pool in the summer time and helping me in the garden watering the vegies. But Summer has left us now and Autumn has all but come and gone and I've had to keep adjusting my "mental milestone calender". I was so sure he would be walking by winter time because I couldn't imagine another winter with a crawling baby - through frosted grass and wet ickky mud - AGAIN. Now I don't want to take anything away from my beautiful boy he is enjoying taking 4 steps in a row and crash tackling me but there is no way that he will be walking by the end of this month and we just had our first frost I have been a slow learner, Owen will do things in his OWN time not mine and he WILL get there and we WILL enjoy strolling around the garden and watering vegies - I should have thrown out that milestone calender years ago.

so why cling to it?

To be honest I think its the intellectual disability thing, it still scares me and it would have been so reassuring for me if he had walked earlier both from the point of view of having felt like we have done enough for him with regards to therapy and also because it may have given me some hope that cognitively he would do well also. I wrote a post about a woman with DS who lives around the block from us who has her licence and drives a (the get away) car, well her mother stopped me in the shops a few weeks ago and asked me how Owen was doing or rather - Was he walking yet? and when I said No hes still a way off walking she said to me - "oh well Megan walked at 17 months she has always done well", and I deflated like a balloon -pppptpttttttttttttttttth. I am pretty sure that just like in typical people the age at which you walk has nothing to do with our other abilities but this encounter gave me the feeling that it did matter.

Urgggh I don't know sometimes when I write things out like this I see how pathetic my fears are, how shallow and how easily hurt I am. What I want for all of my children is for them to be loving, caring, gentle souls who know right from wrong and who treat others (and themselves) with kindness and respect. Not sure if the age you walk has ANYTHING to do with those qualities but I am pretty confident they have nothing to do with them ......whatsoever.

Ready or Not - KAMAKAZIE !

On Monday Owen took one step.
On Tuesday he took two steps
Today Col and I were getting him to walk between us and he took 3 steps !
So I was trying to get it on video, here I am expecting Owen stand up and to walk to his dad but you always have to be ready when there is a KAMIKAZE in the house!!

real quick - steps

Just wanted to document that Owen took 2 steps yesterday. He has a kamikaze style of walking he literally throws himself at me and mostly his legs stay on the ground but occassionally he has gotten a step in but yesterday he got 2 in and it looked a little less accidental. SO EXCITING

the Ambassador

Today is World Down Syndrome Day.

It is also Owens birthday.

After we were told Owen had a strong likelyhood of having Down Syndrome I tried to look up DS using my browser on our mobile phone. I typed the words Down Syndrome into the browser window and hit enter and the first hit to come up said "Today is World Down Syndrome Day". I remember smiling, a dry, sad kinda smile and I knew immediately we didn't need the blood test to confirm it I knew that "an ambassador had been born".

Letting go a little at a time

The backstory is that I tried to start Cy at preschool at the beginning of the term ...it was a disaster. This poor kid is just not ready.

I feel that he has had to hang on to me during these last 2 years instead of, as it shoud be, me holding, cradling him. So he has become very attached to me, fragile and sensitive, to the point where he will cry for me even if he is at home with his Dad (which drives Col nuts).

So it has made me realise that what this one needs most is more time, not less with me.

So as of next week Owen will start at family day care one day a week with a beautiful carer who just happens to know a whole lot of sign language (BONUS!!). The last 2 weeks we have spent a morning with his carer getting to know her, the routine, the other kids - all the other children are the same age (about to turn 2), it all seems to look okay, well better than okay it looks perfect for Owen.

So Thursdays will become Cydays.

I am thinking visits to the art gallery, coffee shops, library, cake baking and walks to the park to feed the ducks. Long (uninterrupted) conversations and holding hands without having to perch 12 kgs on my opposite hip. So looking forward to it !!

Of course there is the other side to this coin which is I am leaving my baby, my most vunerable one. I feel that he will take it all in stride, he has an easygoing nature like his older brother, but it will be the strangest thing to leave Owey with someone else - it is a huge milestone but one I think he is ready to met (not so sure about ME)

Photos from our visits

we started out with some morning tea - mmmmm

Cy cooked up some pizza (I dont think I have ever seen this expression on Cys face before - must have been one-of-those inbetween faces the camera captures~ weird.)

Owen loves to do these handstands and drive a truck, ball, playing cards - anything between his legs like tunnel ball we played at school

Little Picaso

the tramp

Owen has also been loving the trampoline, but it is horrible getting him off the thing, this kid builds up mega amounts of static and we always get the biggest zaps off of it, with some zaps you even see a spark and it does nothing for his hair.

That old bike

Our sweet friends bought around an old bike the other day to hand down to our boys and Owen LOVES the old thing, whenever he sees it he signs "more, bike, yes". Col and I are just about crippled by pushing both boys, Cy and Owen round on it.



I love that they love that old bike.

They don't care that it's rusty or that the paint is faded and peeling or that it has lost its bell, they see that bike for what-it-is, not what it isn't. (~something in that for me)
And that old bike is capital F - Fun.

what he may never be

On the day we got confirmation that Owen did indeed have Down Syndrome we cried alot and then we started to laugh a little and say consoling things like well....

"he'll never be a drug dealer" and "he'll never rob a bank"

And few days later after making those comments we were told about a young woman, (who lives just a few blocks from us) who has Down Syndrome and who holds a drivers licence driving herself around town, to her work and to her table tennis and swim clubs. We were thrilled just to hope that this may be possible for Owen. But then to our (mock) horror we realised

"he may not rob the bank, but he might drive the get away car!!"

his middle name is Magnus

After having Owen I was sitting in the hospital a day or so later flicking through baby name books looking for the perfect name for him, I was listening to the radio and the U2 song Magnificent came on (I'm a complete 90's tragic for U2) some of the words in this song are...

I was born to be with you
In this space and time
after and ever after I haven't had a clue ......

This foolishness can leave a heart black and blue
Only love, only love can leave such a mark
But only love, only love can heal such a scar

Justified till we die, you and I will magnify
The Magnificent, MAGNIFICENT

At the time this song really touched me (heck it still does) and I started flicking through the book to find a name that meant magnificent, that's how he got his middle name Magnus.

His first name means Young Warrior and indeed he is a Magnificent Young Warrior

Scribbling Art

This may look like scribble but it was drawn with absolute intent and concentration.

Owen spent over 20 minutes drawing this and other masterpieces this afternoon. He swapped the crayon from hand to hand, remaining focussed and kept stopping to point at what he was drawing, he definitely knew what he was doing, it was beautiful to watch.

I bought the Crayola Twistables Slick Stix Super-Smooth Crayons they are super easy for Owen to use because he doesn't have to press very hard to get a vibrant result and taking the lid on and off is really for good hand eye co-ordination and strengthening exercise for his hands - they get the thumbs up from me.

coming out of the woods

In keeping this journey real I wanted to tell you that I have needed some help to get to acceptance. I have had about 6 sessions with a counsellor now and it has really helped. Before the counselling I was really suffering a lot of anger and sadness, I felt like I was emotionally running close to bankrupt and I was saying horrible things in my head to myself (I felt doomed)and to Owen (things like "whats the point" - things mothers shouldn't think about their children). I wasn't thinking these things all the time it was usually when I hung out the clothes or had a shower - in those alone times. And one day in my frustration over something I can't even recall now - I called Owen the R-word (in my head) okay that is really shocking and hard to write about! But it snapped me back to reality I burst into tears and I rang and made my first appointment.

The counselling has been fantastic I got to blurt out all my fears and worries unedited (that was the most important bit), I just laid it all out there raw, ugly and unedited, and I cried and cried and cried, because under the anger and frustration I was actually very sad. I was so emotionally exhausted because I had been acting like everything was okay to everyone and that took alot of energy, I wasn't being honest -because I really wanted everything to be good and it seems no-one wants to know when things suck. So over the past few months I have been really trying to be honest when I am having a hard day - I cried recently when a friend at playgroup brought in her new baby, I just let it all out because her baby was surrounded by love and joy from everyone at playgroup and I felt that Owen and I didn't have that, ours was uncertainty and fear and sympathy. So I quietly cried and I explained what I was feeling to the mother of the new baby and she was so understanding and kind and supportive, and then that moment was over and we got on with playgroup. If that situation had happened in the past I would have bottled up my emotions until I got to the car and then burst into tears and I could have been sad for a whole week. This situation made me realise that if I am honest with myself and others I can move toward acceptance with support.

So a funny thing has happened since I have taken on a more honest approach - things really are good, I don't have to pretend, my alone times are filled with "in the moment" thoughts, not fear about our future, Owen is being delightful and things are kinda easy for the first time in a long time. Its still hectic and busy in this house but I don't feel emotionally bankrupt I have energy and I fall into bed at night tired but relaxed, not anxious about what tomorrow brings. I will continue to have counselling every 6 weeks or so - just to keep the momentum cause I know that I am not out of the woods just yet.

Kelle Hampton posted this on her webpage recently and I am reminded of it in writing this post today.

This is an ancient Native American story about an old Cherokee who told his grandson about the battle that goes on within us.

"My son" he told him, "Inside everyone of us dwells two wolves, one evil, one good. The evil one is angry and jealous, full of regret and arrogance, greed and sorrow, guilt and self pity.
The other is good. He is kind and loving, full of hope and peace, joy and compassion". The young boy thought about it for a moment. "Which wolf wins?" he asked his grandfather.
The old Cherokee smiled and simply replied "the one you feed"

Feed your good wolf....

Hair and tail pulling

So Sasha at The Wonder of Wysdom asked me did I have any suggestions about hair pulling and I am pleased to say I have had some success with this behaviour.

Of course we tried OUCH, stop, gentle, no - etc etc all to no avail.

Instead I have redirected his fascination with hair into positive behaviour

• Initially I started with playdough/sand/the top of the table (I know that sounds weird but stay with me here)
• I used KEY words like pat, and rub and a hand over hand technique initially to show him the meaning of the words and what they feel like.
• we did this every day - salt and peppered throughout the day for a few days
• when he was let near hair again he would GRAB and PULL and I would immediately say RUB, RUB, PAT, PAT and guess what - he started rubbing and patting and then we would say awwwwh thats so nice and gentle rub rub, pat pat Good Boy etc laying on the positive reinforcement pretty heavily.

He will still grab at my hair every now and again but as soon as I say those key action words he drops my hair gives me a pat and rub and is very gentle with me.

I have also used this technique to teach him to be gentle with our new (rescued) dog Shadow. We got him at New year (after losing our dog 5 years ago we finally felt ready to have another) we spotted Shadow on the RSPCA website and fell in love with the old fellow (he is 5 years old) he has the most amazing nature, so gentle, placid and cuddly, and Owen really tested him by pulling his hair, tail, ears and beard at every opportunity. As soon as I saw him making a grab I would remind him to pat and rub and he would do that instead - but it has taken a few weeks for Owen to learn just to pat and rub (cause that tail is just made for pulling isn't it ???????)

This is a photo of our new addition Shadow with the boys

Up up up....and away (I hope!)

I just wanted to update after our camping trip when I was worried about Owens groaning and yelling behaviour that he does when he is overwhelmed/frustrated/tired or bored.

We have tried, in the past to ignore this behaviour but that didn't work at all and saying NO hasn't work either. After that camping trip and quite a bit of thinking I have been addressing the behaviour like this;

When Owen is groaning/yelling I respond quickly by

• going over to him and saying his name
• and then waiting for him to respond
• if he doesn't respond I touch him gently on the shoulder and he always stops yelling/groaning
• then I say to him - do you want to come up, up ??( I repeat the KEY word and use the natural open arm gesture)
• and I wait for him to respond - initially I had to model what I wanted him to say, so actually had to say to him - "say up", he learnt quickly and now he responds by saying "uhhhh, uhhhhh, uhhh" and putting his arms out to be picked up
• I pick him up immediately

I know I am still responding to the yelling/groan and I worry that I am still reinforcing it but I hope that by responding quickly he will learn not to go on and on with it as he has in the past. I hope that over time the yelling/groaning will begin to fade away (it has already lessened considerably) and I think as he begins to understand the POWER of words this will happen. I needed to break things down into more steps than you would a typical kid but this strategy is working really well, he seems happier-I am happier!!

Picaso

I am not brave enough to let him loose with real paint just yet but he LOVED painting with water!

We have had a fantastic week here, Owen has been an absolute joy ! Playdough, painting, gardening, and stair climbing (up and down) fill in our days very nicely.

sometimes I'm afraid

We have just been away camping. It was a great trip except for Owen's yelling, groaning and grizzling. I know he is loud at home but out in the bush it just seemed so much louder and with other people camping close by, I was really conscious of just how loud he is. I thought I could sense the other people looking our way, wondering what was "wrong" with our baby, or wishing we could make him be quiet, it was one of those times when I felt poignantly aware of his disability. I felt like yelling out to them - He's got Down Syndrome, OK!

I don't know if other kids with DS are like this or not, but Owen seems to get yell/groan alot - its his outlet for tension - like if the dog comes too close, or he doesn't want that piece of cheese, or he has had enough kisses for the day and I think with all the different sensory input in the bush he was more noisy than usual. I found myself at one point looking over at him sitting on the grass in front of the tents yelling and groaning and I thought - , is he going to be doing this when he is 9, 18, 30, 60 ??? it made me cringe and I felt deeply, deeply sad and afraid, afraid of his disability, afraid for the effect on my other boys and afraid for what my life may look like.

Owen was fine if I carried him round on my hip or in the baby carrier and he LOVED all the butterflies and the waterfalls and he was great in the baby backpack on our long hikes, so that was a saving grace and I hope that once he learns to talk and can communicate and we can reason with him that the yelling, groaning and grizzling will become a distant memory, another thing that I worried over unnecessarily.