Thursday, March 21, 2013


Lovely boy. Happy 4 th birthday. (umm yes that IS Xmas paper.....)

Monday, February 18, 2013

A truth

Kahil Gibran “When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.”

Tuesday, February 5, 2013

What you fear most.

When you sat in that hospital bed or in your house, when they told you your child had Down syndrome what did you fear most??
People staring?
Behavior problems ?
People judging you and comparing your child to their own ?
Strained relationships between siblings, your partner?
Feeling trapped, burdened by your own child?
Well those were some of the things I feared .........

Yesterday my fears were realized.
It was the worst day for years, I felt completely crushed by Down syndrome, yesterday I hated it.

What started out as a great idea to attend the local Story-time at the library ended with me screeching through gritted teeth "we are going home" and me literally pushing Cy to walk faster across the library floor while I carried a a wiggling growling Owen out on my hip.

Yesterday I collapsed to my kitchen floor and sobbed- my poor 5 year old Cy had to console me and all I wanted to say to him is "I am so sorry your brother has Down syndrome " so sorry you didn't get to stay and do the craft at the library because I can't control him"..... I am just so sorry"
But I didn't say "sorry" to him I just wept and told him thank you for being gentle and caring. I made an early lunch dumped it on the table for them and went and went and hid in my room, in my bed. I rang my husband, told him how I just can't do this anymore, I told him I am weak, I felt completely drained.

Storytime was so horrible, Owen was so horrible, he wouldn't listen, he was disruptive, he made a real fuss and I didn't manage very well, I was snappy and embarrassed and cringing and jealous of all those perfect children (especially the ones under the age of 2 who sat like little angels).

Yesterday, I hated Down syndrome.

I felt like Owens behavior was all "its" fault. Oh I could blame the storyteller a little (who was quite disorganized and ditzy) but really it all came down to Owen........and me.

Today, I am bruised, reflective, sad and I feel ashamed for the way I marched poor Cy out of the library and for slamming the car door when I put the boys in (so loudly it frightened an old woman walking past!) and for the way I roughly hauled Owen out of the car when we got home. I feel embarrassed for looking like the crazed, flipped-her-wig-mother-of-the-growling/screaming-kid-with-Ds and the crying older brother who just wanted to stay for craft and for the uncomfortable looks and the looks of pity from them people at the library. I am sorry for putting my sweet boys in that situation. They totally deserve better from me.

I don't have anything amazing or insightful or healing to say about yesterday, it's was a bleak day in my parenting, it sucked..... big fail.

Today I get to try again, at being the parent I want to be. It is a tough gig, I know that. Sometimes I want to have that picture perfect family or at least, you know, the family that can take disability on ~lying down...the family that can suck it up and get on with life. But sometimes.... sometimes it is just fucking hard. Sometimes I just want to crawl away.

Today I don't hate Down syndrome but yesterday I did.

Wednesday, January 23, 2013

Park visit

Well the park visit went as expected...

A glimpse of conversation.
Run off to round-up Owen.
Bring Owen back to the playground.
Resume conversation for a minute,
and repeat Owen round-up.
I wish this town had a fenced playground!

But it actually wasn't as bad as it sounds.

Sure I was knackered after running all over the place for Owen but there were also moments when he stayed and played, or had a drink or something to eat, so I did get little bits of conversation and Cy had a really great time with his friend.

So on the whole, it wasn't easy but it was worth it.

I also worked out that the kids are much faster at running down and rounding-up Owen than I am! (mental note: invite more kid helpers next time).

Monday, January 21, 2013

Stay or go?

Meant to meet with a new friend at the playground in an hour or so. Cy is good buddies with her little boy. I know Owen, I *know I will be chasing him all over the place, he loves to RUN away at this playground and he is fast!

I hate that I feel like quitting, throwing in the towel because chasing Owen around seems too flipping hard today. I hate that I will be running after my child instead of enjoying a conversation and getting to know this new friend. Owey is going to be 4 in March but when i am chasing Owen all over the place I feel like i am still parenting an 18 month old........I'm tired....

I am going to go to the park, Cy needs to play with his friend and my needs for connection and conversation are just going to take a back seat...again...and I have to give Owen a chance, the chance to make a mistake and learn from it, (and then repeat it again and again) hoping that maybe one day it will click,- Go to the playground and play THERE.

Okay so will post later how it goes.

Monday, January 7, 2013

Give him a go!

Cy (Owens 5 year old brother) has been having trouble with counting objects, he makes mistakes because he often skips an object, (don't know what's going on there) so over the past week we have been practicing counting - we count everyday objects, cars, toys, biscuits, sausages ......
I am trying to keep it fun but, I would be lying if I didn't tell you he is frustrating the hell out of me!

So anyway while i am being frustrated by Cys effort, I turn around and there is Owen sitting there counting ..... deliberately, slowly and perfectly! He understands and can use one to one correspondence!! WTH?!

When we started out on this journey, I thought I would be the LAST person to underestimate Owen! I thought I would be his champion and advocate, shouting from the roof tops to let him have I realize I do underestimate him.....and I realize what a blessing it is to have these two boys Cy and Owen so close in age (even though they don't get on that great) and even though it has me tearing my hair out most days, they learn a lot from each other (good and bad!!), and O gets exposure to things through Cy that I don't think he will understand yet...but maybe he just might.....

Thursday, January 3, 2013

When to help?

Owen surprises me sometimes.

Like this picture he made using a magnetic toy we got for Cy back in November for his birthday.

He spent quite along time on this picture "hat-man" and the only direction I gave was to point to the long rectangle pieces and suggest they could be arms but he was the one that picked the pieces up out of the left hand side tray and put them on (and he chose to flip those two pieces over so the magnetic strip is up). He was getting pretty frustrated with the eyes and mouth as they weren't in exactly the right spot and his fine motor control is still clumsy (he barely has a pincer grip - actually- at best I would call it very weak). (So while I was wildly impressed with his art work I am also feeling guilty that I have never worked on fine motor skills with him). I felt sad when he cried out in frustration because he was trying to get the pieces in just the right relationship to each other and due to his clumsiness one of the other pieces would get moved as he placed the next piece.

At one point I thought he was about to completely lose it as he had knocked the eyes out of position (again) so I did step in to put the eyes back in their places, part of me wishes I hadn't touched his work but the other part (the instinctive part) knows he might have picked up the tray and hurled it at that point, he just needed that tiny bit of (emotional) support and he kept working on the person and then that hat kept growing .........and growing.

When I reflected on it later I thought that, knowing "when to and how to" support my kids and when to "let them be" is the hardest part of parenting for me, I don't want things to be hard for my kids, I don't want them to be frustrated with the detail so that they give up on the bigger picture.

But I know I step in too quickly most of the time, I need to step back and wait and to give them more time and as little help as necessary (at just the right moment) (hey no pressure!!!) but it does make a difference, because Owen was really proud (me too) of his finished "hat man" so when I got the camera out to take some photos, Owen went and picked up the torch he had been playing with earlier and pretended to take photos of "hat man" too (you can see him holding the torch "taking a photo of hat-man" on the bottom edge of the photo)

So this also got me thinking about how important it is to give Owen different kinds of materials because there is no way he could ever draw something like this (like an average child might) especially with his weak fine motor skills. But maybe I can give him things like these magnetic shapes (preformed shapes) like a ?paper plate and ?some stickers or ?leaves and he can stick them on ? I am not a crafty person, it's just not me !
BUT I can see now how important it is - because theres stuff in there, in his head- he just needs to have the right materials to creatively express himself.

Crap this learning curve is steep