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

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.