Lockdown living

 Soft rainy day here. Yr 2 of Covid. The delta strain has Sydney in its grip. I got my second AZ jab yesterday. Now half our household is fully vaccinated. Hannah is in the ‘vulnerable’ group and as such is eligible for the more desirable Pfizer jab. By the time we’d double checked with her paediatrician and her rheumatologist supplies were even more thin on the ground but finally this week she’s due to have her first jab.

We’ve been trying to navigate the health website every few days since to find a booking for Kit - as a carer & household member we need all of us done. No luck yet but we’ll keep trying. Hopefully come October he’ll be done too.

Going nowhere but staying safe and counting every blessing that keeps us that way. It takes a community.

Sadness

Parenting a child with special needs can be so lonely. Even when acceptance is high the difference that excludes arises to catch us off guard. Blindsides us with grief. 

We've been here before and won't be defeated. After a crappy week in the Dock we've set our dial to HOME. Outsiders not welcome as we gather in a tight embrace warding off fear, cowardice  and exclusion under any explanation.

Every carer knows they should look after themselves in order to keep up the good fight. And so this simple wreath has left its cleansing soothing scent on my fingers and come tomorrow I'll be back - cos lonely as things get - this parenting gig is mine and I d rather change the world than change my daughter .

Renovation

Renovate me

But wait, we've made progress 

Last year we were finally able to call an architect. When she came back with 2 ideas we were thrilled. I thought we'd have to add a story cos our block is small but the architect also suggested an alternative plan where we added rooms but stayed on one level. Perfect - full of excitement we thought it all might be done by Christmas and then as time passed, we thought Easter and now with Easter just 2 weeks away....I dare not even hope that work can start by the end of this year.

You see there's a sewer main that runs under our property. It will need to be encased with concrete and foundations for the extension will need to account for it. This is not the problem though cos it would involve at most 3 metres of pipe. No, the straw that's broken my spirit are the two side pipes. We know not where they go. Clearly some higgldy piggly route towards our neighbours but we have been digging, we've paid labourers to dig too... But have not been able to locate their placement at the edge of where the proposed building is to happen. 

If we don't find them Sydney water (whose plans are not accurate) won't sign off on our complying development. We can't finalise structural details till we find them and have them signed off. So we can't put our Reno proposal out to tender either....and so hiding in my room, trying to forget the mess that is our back yard at the moment, I just feel like crying. 

Finding a high school for Kit is proving challenging and I'm feeling like I let him down. Failure weighs heavy.... Renovation nightmare might just be a cliche but I think we've found some sort of hell even before the renovation has started!

Down Syndrome Awareness Post 2 - Fragility

Below is the link to an earlier post. I wrote it when the twins were little and the trauma of their early ill health is still fresh and raw. I wrote it as a form of therapy - to carthetise the wounds - to heal. Now 10 years later I have to say that the healing has proceeded and there are many aspects of this earlier post that I'd edit out today. In fact I'm a bit embarrassed by some of it - but it is a part of out story and so I will leave it as is for now.

Instead I shall change the context from which it is read. Falling pregnant was a struggle. For Phil and I there were lots of times of great sadness just prior to finally expecting our twins. Deep dark sadness where we clung to each other, murky scary depths which I felt and struggled to explain to him. But we did it. Falling pregnant didn't end those fears though - as I have already said Twin 1s heart defect put paid to that.


Both babies had serious life threatening illnesses before they'd cracked 6 months. Life threatening. It felt as if our parenting idendities were forged in fire, yes we stood strong and together. I have been to the edge and Phil was there with me. Together we willed our kids through and pulled through ourselves. There are still scars. The fragility of life, the sinking feeling of terror can be roused too easily. It isn't really about Down Syndrome though.... advocating in new situations for Hannah is emotionally exhausting - but it isn't because  she has Down Syndrome - it's because we need to help others understand and overcome their concerns and fears about her having DS. That's where as twee as some of the DS Awareness posts can be (and I am definitely  guilty of those) they are essential.

DS Awareness ideally supports the voices of people with DS - to be heard and responded to. Often due to the nature of the disability it is family and friends carying the baton, advocating for people with DS and fighting for those opportunities. for that audience.

So when very cute indicviduals with DS are in your news feed - remember - it's an important start...because it enabes individuals like Madeline Stuart to strut her stuff on NY catwalks and it just might one day enable  both my children a secondary education where learning; belonging and being valued are more important than chasing marks whichever end of the bell curve you lie on.

October 1 Awareness - Fear

October is "Down Syndrome Awareness Month" and once again the optimist in me thinks I'll give it a crack - raising awareness, promoting inclusion - for diversity generally and Down Syndrome in particular.

For me, the journey began with fear. We were told that twin 1 had a complete AVSD (atrioventricular septal defect) - in other words - a huge hole in her heart meaning that instead of 4 chambers her tiny heart - at the size of my thumbnail had 1. Oh - and then the cardiac paediatrician asked if we'd had any prenatal testing...cos about half the babies he'd seen with this congenital heart defect had Down Syndrome.

Then all I remember is the feeling - fear, mixed with terror. We drove home stunned. Phil went tot he corner shop and bought me a family sized block of chocolate which I consumed that afternoon. He took up smoking. We cried for a week. As I cried I sewed....a patchwork cot quilt of the alphabet. There was no way that quilt was anyone's but Hannah's. My Twin 1.

And then after we'd regrouped (mostly).... I prayed. Mostly I prayed for my baby to live, and also sometimes for her not to have DS. Mostly though I desperately wanted her to live, whoever she was - I wanted to get to meet my daughter. In the image above - my twins are 10 - and we are visiting Mary Mackillop place with my Dad. I give thanks for my two monsters every day. I still know fear - but I have learned that fear of difference and the unknown alone is misplaced. And I know that facing those fears is liberating, exciting, amazing and enjoyable - yes - FUN is the best way to describe the results.

One step closer

We have listened to the presentation regarding the new 'special school' opening next year. No it isn't for us. We have now had 2 meetings at my preferred High School for Hannah - and I still prefer it for her. In fact although I know it won't be easy, I am actually looking forward to it. The principal and special ed teacher seem very good.

Looking for Checklists and Answers

We are thinking about it about high school in the Dock. Yup.  High school!  Do i need to say more?  Surely you're already planning to provide some comfort and destressing stratgies for me because if you are reading this you probably understand only too well the heightened stress levels involved in such thoughts.

I can hardly believe it myself. And to make matters worse we are planning on going to an information night for a new special school this week and we have an interview with one of our two preferred local high schools in 3 weeks time.

So my worries are many but essentially they all revolve around doing what is best for Hannah. Just wish my crystal ball wasnt quite so murky!!

This afternoon i googled 'how to know if i should choose a special school ' My search revealed some helpful links to sites with checklists of what to consider but not anything conclusive enough for me.  Best advice was to stop worrying about how it might all work for Hannah and focus on the outcomes we think are a priority for her to work towards in high school.

Hmmm. What is the aim of the next SIX years in formal education?  I wonder.  And how can i truly consider a special school for a kid tat has been educated inclusively in  regular classrooms since kindy?

I tried to get Hannah 's view on things. No easy task when her answers are so important and i need to draw out her views whilst trying not to persuade or lead her in any particular direction.  I tried asking her aboutbher dance classes cos she goes to a regular one (where most of the dancers are younger than she is and she also goes to a disability one where most dancers are around her age or older.  Which didshe prefer and why?  If she could go to a high school with kids like those at Nikki's dance or one where all te students found learning a bit difficult (like the disabilty dancers) - which would she prefer and why?  Its a loaded question especially for a kid with an intellectual disability,  worth asking for sure but not really enough to basevmy decision on.  For the ecord she chose the inclusive regularvsetting 'cos i think mixed is better,  they are better at dancing'.

And so my pensiveness continues,  i really need to mull this one over,  it isn't going to be easy but i have to believe it will be alright in the end.

Bowling

Hannah's first taste of bowling was on school camp this year. She loved it - so today the spy family hired some fancy shoes and went ten pin bowling. It was loads of fun although I think I'd have fared better if they'd given me the option of sides up too!