A perspective on the world of disability from a mother and an educator. Follow my blog!

Monday, 29 September 2014

Happy to be wrong!

School holidays are such a fabulous treat, especially when you are a teacher and you get to spend that time with your little chickens! If you follow us on Facebook then you would have seen plenty of pics of all our camping fun. We weren't able to go to our traditional September holiday and aren't likely to be blessed with it again (a beach side unit in a BEAUTIFUL resort for cleaning rates only!), so we accepted the challenge and decided to become campers! We chose a park in a small seaside town thanks to the recommendation of my lovely SIL. An old work colleague has already recommended a great farm stay place for our next trip in a few months time and we are planning already. My Bear is excited about increasing our camping kit after our success so if you have any essentials that you would recommend, let us know! We saw plenty of coffee machines and even a thermomix this time around!

While we are proudly calling this a success, this trip, like so many others, is one that reminds us of the perils of stepping out of our comfort zone. I'm sure every parent worries about bullying, except maybe the parents of the bullies, but when your child stands out as different there is a sick feeling in the pit of your stomach every time someone new interacts with your child. If the best predictor of future experience is past experience, then bullying and ostracising is going to happen again and again. This time some children had just left the playground Imogen was in when my Bear heard them say to another group of children, 'Don't go in there. There's a creepy girl with wierd eyes. They're huge!'

We are home bodies for many reasons, but fear of unknown social situations for Imogen is a big reason. We also avoid going out more than we need to as Imogen's body doesn't handle it too well with a chronic illness dictating her life. It's no way to live. Imogen's illness means she fatigues very easily and become highly emotional or non-communicative from anything which is too taxing. We were very worried that a new experience like camping might be too much for her, and she proved us wrong big time! It was one of those times you are so happy to be told that you're wrong.

Diet and nutrition are becoming an overwhelming focus in our house, causing tears on many an occasion, mostly mine. More about it in the next blog, but thankfully were were able to survive camping under incredible restrictions!


Friday, 19 September 2014

Friendship

Living in Holland you are reminded constantly that you are in Holland, while your friends live in Paris or Rome.

This year I've been getting out and really enjoying time with friends, putting the effort into catching up with old colleagues and booking in playdates for my big girl. Much more than I did last year. Friendships with other mothers is something that has always been a bit of a conundrum at times. It's hard to relate when their experiences of parenting are so different from ours.  Their concerns are not our concerns; their hopes are not our hopes.

I know my parenting path is different and sometimes I do grieve that the bumps and hurdles experienced by others aren’t what we experience. The parents of the other children is Imogen's social circle have their own trials and triumphs.

Triumphs
  • Making it through a whole school week without fatigue interfering
  • Remembering to give Imogen her medication 3 times a day
  • Having her dress or feed herself (ie she's not so tired she needs us to do it for her)
  • Hearing articulate sentences that explain what's going on in her head
Trials
  • Having conversations with teachers about how hard the day was
  • Waiting a year and a day for Imogen to get out of the car
  • Dealing with the stream of tears of the smallest thing
  • Having to say no to tv and movies knowing that she enjoys them so much because they are easy for her to engage with.
Talking to one of my closest friends about parenting joys/terrors as we went for an evening walk she brought up the issue of her trials not being the same as my trials. She thought hers might seem insignificant. What I felt was that there was this world going on that I knew nothing about. I didn't know what 'typical' parenting was. It’s nice to hear what ‘normal’ life is and sometimes I do feel left out because I don’t have a lot of those conversations with other parents.

It’s never insignificant. Never. Just different. I’ve learnt to accept what different is. Our reality is our normal. It’s not less, it’s not more. it just is. Better to feel grief than exclusion I think.

Saturday, 13 September 2014

Belated Father's Day

Fathers Day was last Sunday here in Australia and as my Bear's gift wasn't happening until today I thought I'd hold of on a Fathers Day blog. I'm sure by now you've picked up on our love of gardening (if not, where have you been?). Since this time last year our veggie patch has doubled in size, as has our brood of chickens! Our cottage garden is coming together with a wisteria covered arbour nearly finished as the entry to our house and yard. As a Fathers Day gift this year I organised a consultation with our good friend Clint, a well respected and award winning landscaper. There is only so much advice you can ask out of friendship before you need to make it official! I think it did a world of good to hear that the garden that was built from scratch was spot on for design.
Planning out a dry creek bed for the Australian 
native garden out the back. 

So as these two fine men wondered our vast estate (1/4 acre) and discussed designs, revamps and maintenance I thought it timely to write about a father's role in life of a child with a disability, at least from the perspective of a mother!

Our girls play area will get a wrap around seating for their stage.    We were first introduced to Orpington chickens by Clint.


I remember my Bear being hit hard by the diagnosis the day after Imogen was born, and since then he has worked tirelessly to give her whatever she needed, though at times I know I have been guilty of overlooking his contribution.  In the early days he barely got to see Imogen as his responsibilities at work took so many hours. He'd leave for work before she woke and he'd come home after she went to bed. While I was there doing the intensive physiotherapy for hours each day and running around to specialists and early intervention, Bear was busting a gut to make sure no expense was out of our reach. 18 months of that really took its toll though and we learnt that we needed a more combined focus and effort.

In the beginning there were specific fatherhood dreams that my Bear held and so quickly we had to toss them aside and learn not to expect anything, but to take each day as it comes. Low and behold the daddy daughter trips to the cinema are a reality, as is sharing a love of Astrix and Dr Who and teaching her how to use power tools. There is a very special and unique bond between them, but it is something that takes a lot of time and energy.

There are times when I can see the worry on his face as plain as day and I'm sure many parents feel hobbled and powerless when their child is struggling. I'm sure many fathers feel like the only thing they can contribute is a wage and that was how my Bear felt for a long time. One thing that has really helped us is both of us working part time. When consumed by a full time job we have both been guilty of having little energy left to invest in our family. Now we have a perfect balance happening where as a father he no longer feels disconnected.

We have it sorted with each of us covering different elements and we've become specialists in our fields. I look after classroom adjustments and outside service providers and Bear takes care of allied health (physio, podiatrist etc) and specialists like the pediatrician and endocrinologist. I look after diet and he looks after physical activity. I organise her social life while my Bear does homework. For us the division of labour has worked, but it does require excellent communication to make sure we have everything covered. Good communication itself is something that requires effort and maintenance. 

Considering we started with a bare block we've come a long way. We also started parenting with no knowledge of life with a disability.


Building a beautiful place for use all to retreat to is a project we have been working on for years and we are really starting to see and enjoy the fruits of our labours. I guess that goes not just for our garden, but building our little family. 

Wednesday, 10 September 2014

Expectations

Expectations will knock you down and kick your teeth out.

That's a phrase that gets thrown around our house a lot. In all truth though, the school we send our two big girls to  has taught us so much about expectations. The school is so true to their philosophy of holistic education that each week there's a Parents Program where we learn to be the best parents we can be. Most of the time it is group therapy where we learn that we don't have to be perfect parents and advice is give freely without judgement. It's not often a school commits to supporting their families as well as the children especially when there's a driving philosophy behind the school. One of the BIG things we talk about in Parent Group is the expectations we place on our children, and those we place on ourselves.

If you follow our family on Facebook you would know about our new tv policy.

August 26 :  One of the big childhood hurdles for those with Down syndrome (most intellectual impairments in fact), is initiating and engaging in play. Sometimes it is very hard to know how to entertain yourself.

Imogen LOVES her movies. It's easy for her as she doesn't have to put the thinking effort into maintaining interest in an activity. TV can be a highly motivating reward for less enjoyable tasks some times. Unfortunately for us Miss I has come to rely on TV a little too much- and it's not allowing her to develop much needed skills.

So..... Mean mother that I am, I'm not allowing tv until the end of school term. Instead I will have to work a little smarter to keep her occupied. 


Three weeks later and I think that the whole shift is working well. Our girls are playing well together plus we have a quieter and calmer house. Here's the rub though - engaging in play and knowing how to progress play is very hard for Imogen. Knowing what to say, how to respond and how to communicate her ideas and wants can be a challenge. She is putting all this extra effort into doing what we all take for granted and now her little body is tired. Her brain is using up so much energy that there is little left over at the end of the day. 

To put it into comparison, Imogen isn't tired from marathon training. She isn't exhausted from cross fit. She isn't trying to understand string theory. Her body isn't fatigued from the flu (through the Graves is causing some troubles at the moment). 

The expectations that we place on her - academically, socially, emotionally - need to be viewed in respect to the toll they take on her mind and body. For us that means being very mindful of how her body is coping with the demands placed on her. Are we asking too much some days - or worse yet, are we not challenging her enough because we think she isn't up to it or because it will inconvenience us too much. The expectations surrounding tying shoe laces has been filling our lives lately as our middle girl, Stella, managed to learn within hours of getting her new shoes despite being years younger than Imogen. We didn't want to place the expectation of tying laces on Imogen and then be disappointed if it wasn't for her, or worse, have her feel like she was unable to learn how. Low and behold, she has mastered laces at the age of 8! At one end of the spectrum of milestone acquisition but still peer equivalent!

 Getting the balance of expectations right, or better yet, tossing expectations out the window, is something many teachers I have worked with could spend more time working on. We should never ask children to conform, especially when they were born to stand out.