EI how much is enough

From our government funded EI program Owen has had:

• six 1 hour sessions of speech therapy in the past 18 months
• Four, 1 hour sessions of OT in 18 months.
• PT 1 hour about every 6 -8 weeks though we haven't had a session for months.
• A hydrotherapy class for kids with disabilities is run every week for 1 hour (Owen LOVES this). Our attendance is sporadic though because of illness, school holidays and Owen sleep times changing over the past 18 months.
• we also attend an Early Intervention Playgroup once a week- its a free-play session, some singing, and usually a therapist will also attend to answer any questions. Its not a great session, it always seems so disjointed.

Is that enough?

Well I know I don't feel very well supported by the formal EI program, I do feel I have to do it by myself, it's stressful and tiring - emotionally, physically and mentally.

In addition to the above we also:

• attend a kindermusic session (30 minutes a week) I have taken Owen since he was a tiny baby, initally just in the baby harness but now he takes part in the lessons alongside his brother.
• attend a Rudolf Steiner Playgroup on Mondays it goes for 2.5 hours lots of lovely sensory play, natural materials, rythmn, singing and repetition, both Cyrus and Owen are enjoying it. (this playgroup clashes with Hyrdotherapy so we are not doing hydro this term)
• I have Owen and Cyrus to our private Osteopath/myofasial (?spelling) therapist for regular assessments since they were both babies (Cyrus has gross motor and speech delays)
• I have done treadmill training with Owen from 10 months till about 13 months 5 days a week until we were all frustrated with it. But now that he is crawling well and has better core strength I aim to have him start again yesterday he did 5 minutes (30 meteres) stepping it out the whole time.
• He watches the Your baby can read DVD's about 3 times a week (we aren't big TV watchers at our house) Owen and Cy both love the DVD's and can read quite a few words from them.

Then there is all the normal stuff you do with kids, play outside, in the sand pit, swing on the swings (everyday), sing to them, read to them, wrestle with them on the floor.

Is it enough?

Its all I can do.

Its all I know to do, at this time.

I wish there were more hours in the day

I wish I had more energy

I wish I had a crystal ball

so I could know

is this is enough?

Tubes are IN

After a very long wait and two cancelled surgerys due to illness the Ear Tubes (grommets) are finally in!

Ghosts of Open Heart Surgery made it a bit traumatic for me, but Owey did fantastic.

Surgery lasted about 30 minutes there was lots of fluid and the surgeon said "nothing like a challange first thing in the morning", the grommets were as big as Owens ear canals and it was difficult to get them in. After the surgery Owen nursed and slept for about 30 minutes then stretched and woke up smilling, he was joyful and happy all day.

He has a bit of bloody gunk coming out his right ear, not alot, but we are keeping an eye on it, he is on antibiotic drops until Sunday fingers crossed it will clear.

I am not sure if we are meant to see instant results or if it will take time, but today he has attempted to say Bang Bang -" Ng Ng" - which is a new sound for him, a soft sound - his other sounds (words) are all harsh vowel sounds and he also said Car softly rather than his usual harsh KRRRR KRRR.

Now I am trying not to worry about infection, scarring, the tubes falling out or becoming blocked I didn't realise that once the tubes were in that there was a whole nother bag of things to worry an obsess over ! time for my own harsh vowel sounds AHHHHHHHHHHGGGHHHH

coming to terms with the past

I have done some editing of this post because after posting it and then sleeping on it I felt uncomfortable with the original words I had used.

Owen is meant to have just turned 18 months old, -he was due the 27th of April arrived the 21st of March 2009). Its been a wild 19 and a half months. I am not sure whether to write that I have found peace with the 47th chromosome but I am in a good place at the moment. But until very recently I was still struggling with it.

For me the grieving process has been interuptted and complicated by Owens health (jaundice, cardiac failure, sleep apnea, cardiac surgery, hypothyroidism, and respiratory viruses, hearing loss (still WAITING for him to be well enough to have ear tubes in) and his newest health issue asthma. Each time he got sick it was like we hit another speed hump on the road of acceptance. We went on to survival mode and would do what we had to, to get him better. But then he would get well again and instead of feeling joy I often just felt exhausted and deflated and sad about Down Syndrome. Because, I would think we wouldn't be going through any of this if it wasn't for that extra chromosome. (which I know is not really true).

One of my biggest issues is the fact that we are THAT family, you know that family with the kid with Down Syndrome - at playgroup, at school, at soccer, at music. And I wondered why did that bother me so much but in a moment of clarity I have realised that this is about me.

As a child I grew up in a small town (just 300 people) our family was hardly "normal" with my Dad having a mental illness that he self medicated and everyone in town knew it and I think was afraid of him. I grew up with a great deal of shame, powerlessness and anger, we where That Family.

As soon as I could, at just turned 17, I left that town and started my own life and it was going to be "normal".

And it was .......until Down Syndrome and now I feel right back where I started out, now I feel like we are That Family again, ironic isn't it. So anyway realising this deep connection with my past and my childhood desire just be normal has been such a release for me, I realise it has what has kept me "in grief", I acknowledge that wanting to be "normal" will probably be a the thorn in my side, my weak point. But in that moment of realisation and since then, I have felt lighter, felt much more at peace with Owen having Down Syndrome, because it just is and yes it is who we are, we are - That Family - the one that loves, adores their kid with Down Syndrome.

So, back to grieving and acceptance, now I realise that this process is determined by the experiences of my past, my family relationships and my childs health and possibly a thousand other variables no wonder it is taking some time.

Three little pigs

Meal times are never just about eating !

Beach Photos

So good to be back home, we had a great week at the beach.


We all just loved the sunshine and seeing trees in full leaf again!


We took Owen and Cy's little car down the beach it was a big hit with both of them.


These perfect little spheres of sand are made by crabs at low tide and cover the beach.



Owen LOVES to eat sand I had to distract him with other things to play with the whole time we were on the beach or else he was shovelling it in by the fistful.


We went to the butterfly house - it was very humid and very warm inside, Owen looks ready to pass out.


We stopped at the markets in Bellingen and met John (who runs the curry stall there) he recognized Owen (well his 47th chromosome actually) right away and quickly ran to get his son Anun who is 9 and who also has that something extra. It was fantastic to have that instant connection again ! Owen wasn't sure about the beard ! you can check out John and his family in this documentary taken for ABC last year.



When in Coffs Harbour everyone gets their photo taken at the Big Banana - Australia is littered with Big Icons they are pretty wild but everyone always get their photo taken beside them its just what you do.

We had a great time the weather was kind to us and I feel ready to take on this (very busy term), and Christmas is looming.......eek

beach break

So we are off to the beach 7 days of sand and surf - can't say sunshine because it is forecast to rain nearly the whole time we are there! I can't wait to see each of the boys reactions to the beach. We live about 2.5 hours from the coast but havent been since last November, I love that we have a whole week to enjoy it "see you " when we get back

Car Track

We have this little ride on push car at home and I sat Owen on it but he couldn't get it to go, then remembering our crawling track and how the slope helped Owen to learn to crawl I took the little car out to our (overgrown) front path which has a gentle slope down to our frontdoor, and look what happened.


At the beginning did you see him sign "GO" ? (we use AUSLAN - Australian sign language) it is his new sign. Sorry the video goes a bit longer than it needed to and Cyrus pushing the car back over Owens toes ! - I don't know how to edit videos on our camera).