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

Friday, 13 November 2015

Why are we surprised?

In this first nine months of doing my PhD I honestly lost count of how many words I have written and how many I have deleted. Too many. So many that I didn't have any words left in me to blog. My literature review is submitted now and my supervisor is away on holidays so I'm taking an imposed break from research. Writing a blog surely doesn't count though?

There have been so many things to write about since my last blog, and I half started so many inside my head. Now that I'm actually logged in the one thing that is weighing on me is the words we use and how that relates to our perception of disability (not that fair of my thesis topics really!).

The Melbourne Cup race is the biggest horse racing event of the year in Australia. There's the inevitable work lunches and sweepstakes but what happened this year was totally unexpected. Not only was the race won by a female jockey for the first time, but her brother was her strapper; and her brother has T21 (Down syndrome).

The media erupted, marveling at how incredible this all was. A woman won the cup? Her brother has a disability and he is a contributing member of society?  The surprise that echoed through news and social media was little short of condescending. When we are surprised that someone can achieve something, our words are saying what we really think. We didn't believe that they could do that thing in the first place.

A woman won the race? Congratulations to her! But why shouldn't she be able to win? Women can ride a horse just as well as men. A man with a disability has held a job for the last 10 years doing the thing that he loves? Well, why shouldn't he be able to do that? Why are you surprised at either of these thing? Did you think they couldn't happen? Why?

Please don't be surprised that Imogen has an awesome life that is as much the same as other children her age as it is different.  Don't limit her by thinking she can't do things. Congratulate her for all the hard work she puts into being awesome.

Friday, 3 July 2015

Take a trip away from the everyday,

Take a Dreamworld one day holiday.

That was the catchy jingle that used to play on the tv when I was a child, inviting you to come and visit the most exciting theme park in the country, well at least back in the day! The park has changed so much since I was little, but at it's heart it is still the same.

Yesterday on a complete whim, inspired by a friend, we bought 12 month passes for our family to visit the symbol of childhood ecstasy. Kinda crazy right from the outset as the park is much further from my home now than it was as a child and driving long distances with children in the car is rarely appealing to either the parents or the children! Despite this we decided spontaneity was the order of the day and we surprised the girls this morning by jumping into the car before the sun had even broken through the fog.

Without a doubt it was the perfect day. Perfect drive, perfect weather, perfect behaviour, perfectly planned. My inner child was beyond thrilled to share rides like the rapid river ride and the vintage cars with my own girls. My inner parent was bursting with pride to see my girls enjoying rides that I deemed far too scary or nauseating to contemplate!

That catchy tune kept playing in my head.

'Take a trip from the every day, take a Dreamworld one day holiday'

It is so hard to take a trip away from my every day. Even though it has become my normal, disability follows everywhere I go.

I noticed when the other children in the line stair at Imogen when she acts a little crazy. How to I tell them that she is just very forward in introducing herself and sometimes goes over the top trying to impress other kids.

I noticed when I saw another family with an older daughter with Down syndrome as they helped her off a ride. Will I always have to help Imogen negotiate physical obstacles?

I noticed when she was stuck on the dodgem cars and the attendant failed to help her. Did she just assume Imogen wouldn't understand how to operate the car?

These thoughts are so constant, sometimes fleeting, other times lingering, but they NEVER take a one day holiday.


4 hours of driving
7 hours at a theme park
3 amazingly brave girls
0 tantrums or tiffs

What an incredible day!

Tuesday, 16 June 2015

9 Years a Superhero

The lead up to Imogen's birthday always involves lots of planning on her behalf, counting down of sleeps and plenty of excitement. So of the pre-birthday conversations went like this.

Via Facebook from her Grandpa
To Immy from Pa. What would you like for your birthday?
I Wold. Like A. Cape. Plecs. From imm

 A conversation during school drop off
Family friend: What do you want for your birthday Imogen?
Imogen: Superpowers.
(Wait for it. It gets better!)
Friend's child: You can't just wish for superpowers and then get them.
Imogen: I can make my own decisions.

I knew that I wanted to blog on the anniversary of my life irrevocably changing,  but I didn't know what to say that I haven't said before.  Imogen gave me the answer. Her superhero theme inspired me.

While her self chosen alter ego is 'The Boss of the Books' Imogen is without a doubt a super hero. She changes lives. When I started this blog and the Facebook page it was a bit self indulgent. I've come to realise that by sharing our story, and noramlising disability and chronic illness, Imogen is without a doubt changing the way people think.  I am grateful to all the people who leave comments on our page, and even more touched by the private messages I receive from people either touched by the honesty of our story, or who identify with it in some way.

I always knew that Imogen would have an impact on the other kids in her class, but to have students from other grades, across the school come to know, accept and embrace Imogen is something I could never have imagined. Imagine my surprise when Imogen's birthday plans took an unexpected turn.

There was a time that we were terrified of sending Imogen to school. Our own schooling taught us that those with disabilities were shunned & ridiculed. We still worry about Imogen's eccentricities and how that impacts on her ability to make & maintain friendships. Never in a million years did we ever think that our daughter would have such amazing friendships that she would be the recipient of a surprise birthday party. Never did I imagine that I would have such incredible people to call my friends.

Imogen saves lives. She has saved my life from the banality I had planned for myself, and raised me up to something incredible.

Happy birthday, my perfect Imogen.

I got a text in the middle of the day inviting us to an 'afternoon tea'.
Unconditional friendship is the greatest gift.

A surprise birthday party feast is what we got.

Tuesday, 9 June 2015

A date worth remembering.

Our journey with disability has been filled with many memorable dates, moments and phases. Those places on a calendar than forever change your life. They become burnt into your memory, your flesh, and your soul. While we have quite a few, the biggest of course are Imogen’s two diagnoses. However, there are periods of remission, moments of defying Down syndrome stereotypes and finding our identity within the world of disability.

Our journey has been littered with good years and dysfunctional years.  For me professionally I worked for a number of years building my knowledge base and experience in working with students with disabilities. Then in 2014 I was given a blessing in disguise and stepped back from having to constantly bring work home and giving more of myself to my job than I had any right to give. I have had 18 months to support my girls, focus on home (renovations are fun!), find a new professional direction and the blessing has come again 10 fold. 

Today is one of those dates that I will forever remember as it's the day I'm submitting my proposal for my doctorate. I will officially be a Doctoral student. 

For about 6 years I've had this idea floating around in my head and the jobs I've had in the meantime have all given me bits here and there to contribute to it's growth. The teachers that I have worked with have confirmed time and time again that my idea is valid and that there is a need to change the way teachers think about students with learning difficulties and disabilities.

I thought my idea was not much chop honestly, but now that I have 5 university staff vying to be my supervisors I'm starting to think that maybe there is something truly unique in my proposal. One supervisor is already talking about where to publish and which international conference to present at. To say that this thought terrifies and exhilarates me would not really encompass the range of emotions I'm experiencing.

I can't begin to think of where this is going, without being filled with gratitude for my big girl. Without her, I wouldn't be here. Without her my eyes would not have been opened to this world. Without her, today wouldn't be a date worth remembering, and not soon to be forgotten!

Sunday, 24 May 2015

My small world

There are plenty of times that you are reminded of how small the world is. I've been lucky enough to encounter a few of these of late thanks to embarking on further study.

The first was when I posted a few questions to a forum and received amazing help from a random stranger in the shape of detailed explanations. I was beyond grateful that I was able to find someone willing to explain what I was struggling to understand. I was over the moon to then find out that this person who was a random stranger to me,  living in a different town even, was in fact a friend of one of my closest friends. What a small world we live in!

The most recent reminded of how small my world is came this morning, again through my study. Writing a research proposal is tricky at the best of times, and even though I know exactly what I want to research, the nitty gritty of research design is something new to me. Thankfully I've found a PhD buddy who is traveling the same enrollment path as I am.

We were talking this morning about our projects and where we want to go when we have finished. We talking about using our new found qualifications to travel the world and I had to inform him of a rather unpleasant barrier that keeps my world small.

In order to travel anywhere internationally we would need to, and want to, take our children. In applying for work, study or even residency visas, we will undoubtedly face barriers because of Imogen's Down syndrome and Graves disease. Geographically, my world is likely to be very small. I know my own government has a rather disgusting attitude towards skilled professionals who have children with a diagnosis or disability. I've seen it happen

over again.

I have know this barrier existed for a long time. What surprised me this morning was that my PhD buddy didn't know about it. The world I experience and live in seemed very small all of a sudden. Do I just know about these things because I'm attuned to the world of disability? Is it because this is the bandwagon that I've jumped on and my friends all have their own? I have friends who are passionate about cancer, others childhood diabetes.  I would like to think that I'm aware of their contexts, but maybe I'm just as ignorant about theirs as they are about mine.

Maybe we need to talk about how small our worlds are to make them bigger.

Sunday, 10 May 2015

Mother's Day 2015

A year ago I was on an absolute high after getting to meet a childhood hero of mine. I have spent the last year thinking there was no way that any future Mothers Day would ever compare. This week I have been reminded that things always get better.

For a while now I've been trying to catch up with Imogen's teacher to get an insight into what is happening in the classroom. With both of us having ridiculously busy schedules we've only managed to squeeze in a few conversations in the playground after school. They've been succinct, but profound.

What it boils down to is expectations.The other children in Imogen's class have known her since before they all started school together. I guess that is another joy of living in a small town. They have only ever known her as Imogen. Imogen's class mates have spent the past 5 years growing up with her, knowing her. They know what to expect from her without placing expectations on her.

Letting go of those expectations is truly liberating and I recommend you try it. It isn't lowering your expectations, it's just embracing the freedom to find joy in all the achievements that are made, all the milestones reached. It is a way to hold back the grief felt when expectations are not realised. Imogen's classmates do it naturally, why do we as adults find it so hard?

The last 12 months have been filled with more blessings than the previous 12 and we didn't think that was possible. Aside from Imogen growing and maturing into an amazing young lady who reads competently and chooses to improve her maths in her spare time, we have seen out other two girls blossom beyond belief. Our house is almost unrecognisable with the improvements of the last 12 months and my Bear and I are indulging in serious nerd talk when we study buddy at night.

So while this Mothers Day wasn't as unique as last year, starting the day with breakfast in bed, pottering around in my garden, taking the kids to the river, indulging in the prerequisite hot bath with a book was more than enough to remind me that when you hold no expectations, immense delight can be found in what is right before you.   

Saturday, 21 March 2015

An open thank you

Dear other parents,

Thank you to the deputy manager at our local Aldi. You saw me while I was shopping late the other night. You know I usually do my shopping during the day. You know I'm NEVER out without my girls. All you said was 'Wow, you managed to get some alone time tonight'. Thank you for seeing me. Thank you for your recognition.

Thank you to the leader in my school's parent group. You knew there was a talk on puberty coming up. I approached you to let you know that our path through puberty was going to be a bit different to other parents. You told me that you'd already let the guest speaker know that they needed to cover puberty and disability. Thank you for not only making me feel included, but for making sure I got the best information to help Imogen.

Thank you to the mum of one of Imogen's friends. Your offer to look after Adele while I go to swimming lessons with Imogen has made it so much easier to observe her interactions and learning, without being a distraction to her. You saw that I was having a rotten day this week and you made dinner for my family. Thank you for reminding me that I have the most amazing friends.

Thank you to the admin lady at the local community kindergarten. I came in to put Adele on the wait list for next year and you remembered that Imogen had been there back in 2010. Thank you for letting me know that she has had an impact in making our small part of the world a better place.

Thank you to the mum who stopped me as I walked home to tell me that every time she sees me, she is glad that she doesn't have to walk in my shoes; that she feels grateful that her children are well and healthy. Thank you for acknowledging that some days are quite tough for us. Thank you for acknowledging that we put a lot of effort into giving Imogen the best opportunities possible.

Thank you to my neighbour, who comes over like a grandmother and gives all our girls little gifts. You fill their lives with extra love. You treat them all the same and remind them about being good sisters. Thank you for making our adding some normality to our life.

Thank you to the lovely friend I've made through our Facebook page and blog. When you ask me questions that I'm able to answer I am so happy that I can help. I'm reminded of the steep learning curve we have had and how alone we felt at times. I'm glad that I'm able to make it a little easier for someone else. Thank you for making me feel useful and reassuring me that I've learnt so much already.

Happy World Down Syndrome Day.

Today is going to be a good day.

Monday, 9 March 2015

Life is better BECAUSE of her...

I've been a teacher for longer than I've been a mother. I'm sure it's because of this that I had certain views about how I was going to raise my children and 'help' them with their learning. I was a high achiever at school but struggled socially. I wanted my children to be able to succeed in all areas of school (well, maybe not PE, there are no strong sporting genes on either side of our families!).

So when Imogen was born and we realised that she would need extra, we lept in and gave her that extra. From 2 weeks of age we were learning how much extra that was going to be. It paid off though. Imogen met all her milestones on par with her peers and is still achieving in most areas on par.

It did however make me reconsider how much I was going to push my kids to learn. I was always told as a child that my brother and I could read, write, add, subtract, multiply and divide all before we went to school. Apparently we went through pasta as counters at a rate of knots. I knew that placing this expectation on my own children was not going to work. It no longer sat well with my parenting ideals.

So for Stella I knew I wasn't going to push her to read or write. The same is certainly the same for our youngest, Adele. The funniest thing has occured though. Stella is now completing maths well beyond her age group. Adele is reading better than kids 12-18 months older than her. The reason why?

We put so much effort into Imogen that she is the one who values reading and writing. She has a wonderful work ethic, a thirst for knowledge. She is often teaching her younger sisters. Imogen has certainly taught me, to be a better mother and a better teacher.  We have all been taught to be grateful for the little things, each small achievement. Going slow in Holland can be a very rewarding thing.

Our two youngest girls are exceeding BECAUSE of Imogen. As parents we are driven to be better BECAUSE of Imogen. As teachers we are more compassionate BECAUSE of Imogen.

How dull would our life have been without her?

Sunday, 1 March 2015

To be a better parent...

At a recent meeting for parents at our girls' school, we were asked to discuss 'one thing you have done to be a better parent'. Many parents in our circle couldn't put their finger on one thing. Parenting is a continual reflective practice. There was lots of talk about checking the way we talk to our children, creating a strong family unit and respecting the child's need for independence.

As soon as the question was asked, I was mentally listing all the things I have felt I've had to do in order to be a better parent for Imogen.

She was my first. I knew nothing of being a parent before her. I knew nothing of disability. She taught me everything.

At just two weeks of age she was attending early intervention. I learnt had to do pediatric physio to be a better parent. At 3 months old I organised for a baby sign class to come to our regional town so that I could teach my baby to express herself. From the time she was starting solids I was learning about speech therapy. When she was learning to walk I was researching assistive therapies.

Before Imogen turned two I was realising that I was going to have to do more, if I wanted to be the parent she needed me to be. I enrolled in a Masters degree. She was my motivation and my reward. I learnt more in the first 4 units of my masters than in the 4 years of my undergraduate. Through 2 more pregnancies, two different jobs and atrocious morning (all day) sickness I worked hard, and the efforts more than paid off.

I've was feeling that tug again over the summer holidays, the pull to study again. As Imogen gets older the challenges she faces change. If I want the world to be a better place for her, then I need to make a contribution to that change. Living our mindful, low carbon footprint life just doesn't seem to be enough. It's attitudes and ignorance I need to change.

I spent weeks deliberating what I would go back and study. Guidance and Counseling? Social Work?

Eventually my Bear said 'You've always wanted to do it, just start a PhD.'

The things we do to be a better parent.

Sunday, 22 February 2015


I think that parenting is a cycle of having times when you feel like you're on top. You've got this. School lunches are done. Home readers are done. Dinners are healthy.

There are other times that it all comes crashing down. For us, a crash involves the overwhelming feeling that our journey is different. It comes about because of all the usual reasons for parenting guilt, but added to that is the grief that never goes away. The grief that is stirred up every time the universe reminds you that this world has difficulty with what it doesn't understand. This world has a hard time with anything different. Grief distracts you and takes you away from your purpose.

I fully believe that these moments will happen again and again as our life stage changes, and Imogen grows up and faces new challenges. I fully believe that once the grief has had its moment then it is time to dust myself off and get on with it. It's a choice.

The first remedy to a hurting heart is to simply 'be'. It has been a delight to let go of the daily pressures and spend time passing the torch on a childhood passion - Roald Dahl! We have been steadily reading through the catalogue: Matilda, James and the Giant Peach, Charlie and the Chocolate Factory. Currently we are on to Danny the Champion of the World, my personal favourite. Gavin never quite believed me when I told him I read Matilda when I was 7 years old, but now that Stella is teaching herself to read Charlie and the Chocolate Factory he has a giggle to himself.

Holding those 3 girls in my arms, having them squirm all over me as we read, covering their eyes in the tense moments, has given me purpose again. It has been a moment to breathe.

To keep the momentum of being together, we are undertaking a family project. Every year our incredible town celebrates the depths of winter with a Jumpers & Jazz in July festival.  The town dresses up the trees in artwork (usually knitted) and for two weeks in July the town simply hums with excitement. This year, we are going to register a tree, as a family, and decorate it! Stella has come up with an idea and we are all French knitting or crocheting or felting together.

I love that word, 'together'. 

Having 4 months to get ready should be enough, especially given how much we completed this weekend! It is great because it doesn't matter what each of our skill levels are, we all have something to contribute. An important something to remember in all areas of life.

Monday, 9 February 2015

The Gap Between Holland and Italy

Last Friday I was dropping Imogen off to a friend's house so she could have a play with her school friends. When I got there, the mum was on the phone to the mum of another child in their class. They were talking about homework.

It suddenly occurred to me that I hadn't heard anything about home work. There had been no note in Imogen's bag explaining what Grade 4 homework was going to look like. At that moment I felt so excluded. It was like I was back in high school and the popular girls were ignoring me.

We are in Holland, everyone else is in Italy.

I sent an email to the class teacher who explained exactly what her thinking was - and she's spot on. Quite simply she is an incredible teacher and we are blessed to have her looking after Imogen.

I feel exceptionally guilty for the relief I feel at not having to cram another 15 minutes of home work into our afternoons. I feel guilty that I'm not doing enough to help Imogen keep up.

On my evening walk with a friend (also a mother of a child in the class) I'm explaining all of this homework worry to her.

And then it hits me.            The gap.

The gap between Imogen and her peers is just getting wider. Her friends will learn to drive. They will meet boys. They will go to university.  They will get married. They will have families. In the middle of our evening walk I'm doubled over with the grief as the realisation hits me and the tears take hold.

I know that the extrapolation from not having anything other than a home reader for homework to what the future holds is not a good way to think. But that feeling of being left in Holland creeps up on you when you least expect it.

Monday, 26 January 2015

Things that go bump in the night.

After Imogen decided to pack her bags and try to catch the bus to another town to visit her Grandpa, we though we should perhaps plan for us to all go as a family. The girls adore their grandpa and his endless cooking. Plus he has a pool so of course we all love to visit!

It was great as we got to see my brother and his family. Imogen has such a maternal streak and ADORES her baby cousins. After a lovely day spent catching up with family we decided to head home just after dinner so the girls could fall asleep in the car. This is where it gets interesting.

We could hear an odd noise in our car, and it was getting worse. We kept checking to see if we could find what the problem was but alas, we are not mechanics. We aren't even a little mechanically minded. In all honesty we knew something bad was most likely going to happen and we just wanted to get home in one piece.

And then there was the terrifyingly loud noise. The girls all sat bolt upright, woken from a rather deep sleep. When we could pull over we discovered a tyre blow out. Not the worst thing that could happen but we are grateful it happened on a straight stretch of the highway and not while we were climbing up the mountain range.

I'm proud to say that Gavin and I didn't even let a single expletive slip. We simply got out, and started working together to change the tyre. Last time I had to change a tyre on the road I was with the then boyfriend over a decade ago. He had no idea what to do so I was left to change it on my own in a cocktail dress. This time I was so glad to have a husband who knew what he was doing and who was able to stay calm. I even found a beautiful and delicate butterfly on the ground while were were undoing the wheel nuts.

Staying calm however, was not possible for Imogen. She had woken up with an adrenaline fright. She was in the dark. She didn't understand what was happening.  Imogen has a morbid fear of the dark and has had since she was a toddler.

It was easy enough to explain to our 5 & 3 year olds what was happening, but poor Imogen was hysterical with fight. I'm sure people - parents - are familiar with tantrums in the car but this was not a tantrum. The fear that comes when comprehension of a situation is not possible, is overwhelming. How was I meant to console her while trying to help change a tyre? The space saving spare tyre we had put on the car made it a long & slow drive home, but the panic Imogen was experiencing made it interminable.

Our insurance will cover the damage to the car so that really isn't a concern (the back bumper was shredded, we'll need a new tyre, the reverse sensors will need replacing and who knows what else could be wrong). I had been posting about our car noises on Facebook and knew we had a string of friends waiting to come and pick us up if we ended up stranded. There wasn't a time that Gavin or I were particularly worried. What does make my heart sink is knowing that my big girl has such difficulty understanding everyday situations and what could have been a family adventure was so distressing for her.

Thursday, 22 January 2015

Children don't come with instructions....

.......so I decided to write some!

At the end of last year we found out who our two big girls would have as their teachers for 2015. I was delighted to find out that they were in fact just swapping teachers! Imogen has had her teacher for 2 years and I knew Stella's teacher from my old Education Queensland days so I was thrilled that with them swapping teachers as the teachers both already know our back story.

Imogen's teacher for those two years went above and beyond so many times. She listened when we explained things, she asked questions seeking to clarify. She sought new strategies and checked in with us after trips to the specialist. We spent two years with her, slowly learning about Imogen and how she ticks.

It dawned on me the other day, that while Imogen's teacher for this year knows us and our family, the intricate details of how Imogen ticks, and how her body works, and how the comorbidity of Down syndrome and Graves disease impacts on her daily life, are not yet known to her.

There is a lot to know really, a lot to take in, and a lot to implement.

Executive Functioning
Emotional Resilience
Graves Disease
Take Up Time

I know that some of these are covered in her IEP, but not in any great depth and not in a way that gives a holistic impression of the complex being that is Imogen.  Add to this list that I have just today found out that the eye 'wobble' I've been noticing is indicative of a whole lot of 'other' brain functioning that I now need to consider - particularly with regards to how she learns.  Honestly, with a list that long (and I know other people have longer lists) it's a blessing beyond measure that Imogen is as incredible as she is.

So, how does a mother impart this information on to a new teacher? I had to only think of it in terms of me as a teacher, as a special education specialist, and how I would want to receive that information.  Would I want to be bombarded by that in the first week of school by a crazed parent micromanaging their child? 

In short - yes. Absolutely. To give piece of mind to the parent and to reduce any lag time in getting to know the child. To maximise the learning outcomes for the child, and to make learning as engaging as possible. It certainly helps that only two days ago I had a parent of a child I teach do exactly the same thing. They brought in multiple print outs to help me understand their child, and to allay their own anxieties.

With that answer in mind I have written a manual for my own child. Those pages should explain as much as I know about my child, to help her new teacher understand how that amazing brain works and why her body doesn't work so well. I worry that I am just going to be seen as 'that crazy parent', but I pray that in the long run, it helps Imogen to get the best outcome.

Tuesday, 13 January 2015

My future self.

The holidays are a wonderful time, especially in a small town. It's great to catch up with people you haven't seen in a while and it's often when you are out and about that you run into these people.

It is also while you are out and about, as everyone is during the New Year period, that you see people that you normally wouldn't. Whether it's doing sales shopping, enjoying the local parks or dining out, it is interesting to see the people who make up our community.

I think that it is at this time of year, more than any other time, that I notice all the elderly people, who are out and about with an adult child. An adult child who, for better or worse, has an obvious impairment, mental health concern or disability.

I always make sure I smile at these families. Not a pitying smile, but a smile of reassurance, of understanding, of friendship.

Because I know one day that will be me. One day it will be me, the elderly woman walking with my adult Imogen. I know it, I fear it, I accept it.

I pray that when that day comes, people will smile at me with a smile of reassurance, understanding and friendship.  Gavin and I can make as many plans as we want for our future, but they need to be for 3 people, not 2.

Monday, 5 January 2015

World's Worst Mother

The school holidays have not been easy for Imogen. They've not been easy for any of us. Don't get me wrong. We've had fabulous days; spent hours at the pool, built blanket cubbies, entertained friends new & old.

It has been a very fine balance between too much and not enough. Imogen has needed extra scaffolding, extra support, extra rest. There has been little rest for us as parents.

To give everyone a break Gavin and Imogen went away for the night and now I am left feeling a little despondent about my life as a carer.

After Gavin had gone and it was just myself and our two little girls it was time for the dinner, bath, bed routine. And it was so easy.

After putting Adele to bed I had a 'Mummy & Daughter' night with Stella snuggled up together.  And it was so easy.

The next morning I was able to prepare a special lunch for Gavin and Imogen's return. It was so easy to do. I even had the time/energy/space to make the house spotless and I mean really spotless. Not just putting things away and tidying but where you move things and clean behind them. I couldn't believe how easy it was to spend prolonged time doing one job and still make time to 'be' with the girls, watching Stella ride her bike up the driveway and help Adele collect eggs.

Imogen had a fabulous time away and came back refreshed and full of language and independence again. I am left feeling awful. While Imogen wasn't here - life was easy.

I am then filled with anger and resentment knowing that others have nights or weeks where their children are looked after by others, so they can have time as a couple, time to do jobs, time to relax.

Those 18 hours without my daughter were easy, so much easier than our normal day. I feel like the world's worst mother for thinking this.

Thursday, 1 January 2015

Adjusting in an acquired skill.

It is interesting looking back to what I was posting 12 months ago and to see that while so much has changed, very little has changed too.

What hasn't changed though is the daily struggles and having some of those in our circle not understand Imogen at all.

Imogen was to go for a sleepover for a few days and she was so very excited that she had her bag packed days in advance. However, things went downhill after only 18 hours.

I received a phone call telling me that Imogen was non compliant, non verbal and collapsed on the floor. Long story short, but Imogen had been awake well and truly past her bed time the night before and her executive functioning wasn't at optimum the following morning. Her poor body was drained and had not had the requisite rest to deal with the extra that is required when embarking on a sleep over.

Imogen fixated on tying her shoelaces and would not respond to anything else. She was tired. Now this isn't uncommon at home, but here we understand what is happening inside her brain; we understand executive functioning. At home we know that if she has a late night (30mins to 1 hour after her normal bed time) then we are going to have to make big allowances for that the following day. At home we know the right words to use to help her understand what is going on and what we require from her. At home we adjust our schedule, our routine, our communication, our behaviour - to help Imogen cope.

We had to collect Imogen and end the sleep over. The sleepover host simply didn't understand what was happening for Imogen. They didn't know how to adjust to help her and thought that Imogen's behaviour was something extraordinary. It wasn't. It is our ordinary.

On the drive home Gavin asked Imogen what was happening when the shoelace incident went down. Imogen said that inside her head it was all dizzy and too fast. In response we have decided to slow down everything. All other holiday plans are canceled. We are here for her first and foremost.

The incident reminds us that there are so few people out there who really understand her, and fewer people know what adjustments to make to help her get through a day. It reminds me that our close friends are the most amazing people and we are so incredibly blessed to have them in our lives. Gavin and I will continue to do our thing to help others to understand her better, and thus make each and every tomorrow easier for Imogen to enjoy.