Lessons in Flying

Our family was fortunate this Christmas to be invited by relatives to stay with them in beautiful Perth for two weeks.

I flew over a few days after the others, so was not present for the flight over.

However, on the return flight with a child having such high care needs, it became apparent to me that there is definitely room for improvement in the way the airline services carers as opposed to regular passengers.

We had elected to fly with an airline that serves in-flight meals, and our itinerary required us to change planes at Melbourne.

We were successfully served lunch and snacks on the flight from Perth to Melbourne, and we were to receive our evening meal on the flight from Melbourne to Canberra.

Now this is obviously a much shorter flight, however it still should have allowed us enough time to eat.

The crew were serving sandwiches for dinner, and proceeded to serve from the front of the aircraft to the back where we were seated.

While this was not an issue for the other passengers, it did not take into consideration the fact that we were traveling as carers for a person with a disability who was unable to feed herself and required assistance to eat.

It always takes a while to feed our daughter, and by the time everything was whisked away our child had only managed to consume half of the sandwich, while my husband's was completely untouched.

Despite the fact that we had paid for a meal, he went without.

How different it would have been if we had been served first at least. This would have given him a much better chance to see to our daughter's needs and his own as a carer.

A little bit of thoughtfulness can go a long way to making life a whole lot happier.

Special Kids Shine in Digital Portfolios

Last year our school began reporting using 'digital portfolios'. Basically these are DVDs created with pictures and movies to show what our kids can do in each learning area.

The difference this makes is astounding.

When you can't be with your child during the school day, and when they can't tell you all about it, to get a report which actually shows what your child is doing communicates at a level that not only gives you a real concept of their strengths and weaknesses, but also hits you right in the guts at an emotional level.

My child may not be reading and writing, and it is true I would dearly love her to do all these things. My faith in her is unswerving, and my dreams for her future are big.

But when I opened my daughter's 'report card' this year, I saw her playing with another little girl as if it was the most natural thing in the world. They both appeared to be enjoying this immensely.

Well, sadly this is not the most natural thing in the world for my daughter. It was amazing. Fantastic. Wonderful. Almost unbelievable.

I burst into tears.

I also noticed that the teacher was now using printed words for her to identify in addition to the Boardmaker symbols. This was another very exciting development.

The digital portfolios are the result of many long, hard hours put in by the teaching staff; but they are a gift without measure.

Well, I told Violet I reckoned she deserved an A+ for that effort! I reckon the teachers deserve that too, and a stiff drink to boot!

Merry Christmas, everybody!

Earth calling Santa ...

I love Christmas.

Perhaps I'm just a big kid, but the magic has never completely diminished for me. I still remember my excitement at being an angel in kindergarten, and how we each got a present from the tree.

As an adult, it's certainly harder. There's the shopping and the preparations that leave you exhausted, and the monetary stress; but there's still a certain satisfaction from gazing at the twinkling lights of your Christmas tree in the evening, and seeing the gifts begin to pile up beneath it.

These days it's a little different, however. From around August or September a certain niggling anxiety sets in. What on earth will I get my special little girl? And if only there was a Santa.

It wasn't so hard in the beginning. Many of the baby toys were suitable functionally and age appropriate. Most of them were standard battery operated 'cause and effect' switch based toys with music and flashing lights of the Fisher Price variety. Sometimes we experimented with toys that required greater manual dexterity in the hope that her fine motor skills would improve or with an acceptance that she would require our assistance to access them.

As time passed this became boring beyond belief. I couldn't bear to purchase one more electronic Fisher Price clone baby gizmo. I started getting things like wind up music box toys and snow globes, which she couldn't play with independently but possessed a kind of old world charm.

There are dolls she can't hold, or rock, or dress, or feed. There are tea sets she can only look at. Books she must wait for somebody to read. CDs she must wait for somebody to play. Stuffed toys that gather dust. Stocking fillers are a nightmare.

She gets a lot of clothes and hair elastics. Stacks of DVDs.

But her eyes rarely shine on Christmas morning like mine did.

I do my best. I wait for inspiration. I look high. I look low. And I hope against hope that I will find that one special gift. Get it right this one year.

Small acts of kindness can make a world of difference

I met up with my brother and his family in Sydney today for an early Christmas lunch. I was running late as I had forgotten to pack some nappies for my disabled son so had to hunt for a supermarket in a city that I didn't know very well. I was feeling very frustrated with myself. After 11 years you would think I would remember to pack them. Then I felt really angry that I was still changing nappies after 11 years. Why me? I thought. Why was it so hard just to have a nice lunch with my family?

I then began to worry about what my brother and his wife would think of me being so late. They have two little kids who would be hungry. I often worry what other people will think because often they dont understand what goes on in our crazy world of living with a person with a severe intellectual disability. The stares and tut tuts still hurt.

But when I arrived, my brother and his wife were happy to see us and didnt care that we were late. My sister in law helped feed my son so that I could eat my lunch. I didn't have to ask her either, she just did it.

I was really grateful for that little bit of kindness. It showed that my sister in law understood that I never get to sit and eat a meal in peace. Having someone understand and not judge was a very good feeling.

So if you know someone who cares for a child with a disability - think about what small thing you can do for them - it can make a big difference to that person's day if you show them that you understand.

Getting my son some mates

I watched my elder son, who does not have a disability, play cricket today. It was fabulous to see him surrounded by a group of mates having a great time. My younger, intellectually disabled son is yet to have any mates. I find that terribly sad and I reckon he does too.

I know this because he is interested in people. He goes up to them and touches their hand which is his way of saying hello. The trouble is people dont know how to relate to him. They say hello out of courtesy but then move away.

So the plan is to:

• develolp his communication skills using PECS so that he can communicate with other kids
• take him to places where he can interact with other kids such as after school care, holiday care, swimming and the dog park
• show the other kids how to interact with him
• seek out the kids that are interested in him and invite them over to play

I dont know if this will work but am going to give it a try. Wish me luck. If you have any other ideas, let me know.

Seeing progress - look for the little things

On several occasions over the years I have tried to toilet train my son. On each occasion I got nowhere (or so I thought) and gave up. But he hadn't got nowhere, I was just measuring his progress in big chunks.

I was so focussed on him achieving the goal of using the toilet that I had missed the fact he had learned where the toilet was in the house, how to pull his pants down, how to sit on the toilet and how to pull up his pants and how to flush the toilet.

It's too easy to get disheartened and give up when you just focus on achieving big goals. For children with intellectual disabilities everything needs to be broken down into very, very small chunks.

Shaping and chaining are great methods for teaching kids with intellectual disabilities. They are based on the principal of breaking things down into very small chunks.

A little patience, perseverance and a methodology goes a long way.

Do teachers do the teaching and parents do the caring?

I learned a valuable lesson today, you can't just leave it to the teachers to do the teaching - parents need to get involved too.

My son has had many teachers over his 7 years in school. All of them have been hardworking, dedicated and knowledgeable on the methods and techniques used in special needs education.

I felt confident that all that could be done for my son was being done and as I knew nothing about special needs education there was nothing I could add. I was wrong.

This realisation hit me whilst I was on a PECS course - picture exchange communication. I had enrolled in the course as I knew he was doing it at school - he had been since he was 4. He is now 11 but is still only up to stage 2. So I felt that I needed to do more at home to progress him further.

Whilst on this course I learned about how to teach copying (which, as I mentioned in my last post, he can't do which makes it difficult to learn). I had assumed this wasn't possible. His teachers had never mentioned it to me, and I had never seen it featured in his individual learning programs.

I also learned about the techniques and resources available for progressing children through the stages of PECS which I was completely unaware of.

In this world of limited time, resources, a packed curriculum and large class sizes it is impossible for teachers to know absolutely everything and do absolutely everything. They are only humans like the rest of us.

My boy needs a team of people working together to help him learn at all times of the day and in all kinds of settings, not just in the classroom.

This doesnt mean giving up the day job and setting up a classroom in the kitchen. I learned how I could incorporate PECS into activities we already do at home.

So with a toolkit of new skills and renewed enthusiasm and empowerment I have emailed his teacher and organised a time to plan out how to get him going with PECS. Two heads are always better than one.