Reviving the Blog – and Down Syndrome

So, life caught up with me – or rather, work did – but I’ll attempt to make a new start here in bloggy land. Because lately something has been on my mind.

Working with people who have special needs has given me a unique opportunity to experience life from a different view. When you meet something that’s different from you, you see it, you notice it, and you act. Some turn away and run, others embrace the different and learn, no matter how scary the different can be. I’d love to say that I do the latter, but truth is, I’ve done both, and I think that’s the case for most of us.

I have met people who are different from me in so many ways. Some physically, some in the way they act, think, talk or believe. I’ve met people who see life in such a different way and who have such different values from me that I sometimes wonder if we live in the same world! And yet, they are just like me. They eat and drink, laugh and cry, and get angry and upset. And just like you and me they love and are loved.

And yet, not everyone are willing to embrace that difference.

Did you know that over 90% of parents chose to abort their unborn child if they discover it will have Down Syndrome?

Logically, I understand that some parents are scared and unsure about what to expect, both for themselves and their baby, but 90% is a lot. That’s nine out of ten. Nine out of ten who decide not to have a child with Down Syndrome because of…what?

– They do not have the money to support a child with medical needs, who might require surgery, medication and therapy?

– They are not capable of caring for a child with Down Syndrome – but would be good parents if the child has no disability?

– They are afraid having a disabled child will take so much of their time, love and care that their other children would suffer?

– They are afraid a child with Down Syndrome will get teased and excluded by other children – more than a child with red hair, freckles, glasses or an awful taste in music would?

– A person with Down Syndrome might not be able to drive a car or get a job?

– A person with Down Syndrome might not be able to become prime minister, a lawyer, doctor or scientist?

Is that what we are afraid of? Is that what those 90% were thinking when they decided not to let their baby with Down Syndrome be born? Are those the things that matters most to us in life – money, education, achievements, … normality?

What about the laughter, the happiness, the eagerness to live and to achieve. What about the extra kisses, the jokes and the tickles at 5am in the morning? What about the desire to love and be loved? And what about the baby, the child, the person behind “Down Syndrome”? Did they not deserve to live and to make their own decision about what matters most in life?

I’m not saying having a child with Down Syndrome is a dance on roses, but…90%! It makes me sad.

Down Syndrome is about happiness and laughter, kindness and friendship, stubbornness and personality. It’s about love and life.

 

Resources for educating children with Special Needs

I have often come across the need for different materials when working with children with special needs. Many of the children have skills below their age, but often going to the prep unit to borrow materials just isn’t the right thing. The level might be right, but especially for the children I have worked with in mainstream primary schools in year 5 and 6, there’s a need for different materials. Not only because of the looks they sometimes get from their classmates and the teasing that sometimes happen when a pile of books clearly for young kids gets put in front of them, but also because they are 10-12 years old and the materials from prep, despite being their academic level, are made for 5 year olds. And really, by the time those children get to year 6 and still struggle with reading, they have often read the books from the lower grades so many times they know them by heart!

But what else is there to do? If you have a kid in your year 6 class, who still reads on a prep or year 1 level, you can’t very well give him the same materials as the rest of the class. That just doesn’t work, no matter how great the integration aide is (if you are one of the lucky ones to have one at all…) The easiest thing often seems to ask the prep teacher for help with resources and then work your way from that. And to be fair, often the resources and ideas are  good –  at least to get you started.

I have found that materials for math activities can sometimes be a great help even if you have to go down several levels to find some suitable for your student. Sometimes they can be used as they are, whether it’s worksheets, games or other materials, but often a little adjustment is needed. Having a kid in year 5 do different work than the rest of the grade might not be a big problem, but if the work shouts out “I am not as good in maths as the others!” you might want to re-think your use in materials. It’s hard enough for a kid to be behind the grade. And believe me, they know! But to have everyone else in the class stare at them while they try to do their worksheet which with big letters at the top says “Welcome to grade 1” is neither fair nor constructive. Getting the students to improve and get better academically is only one of our jobs as a teacher, the students’ self-esteem, happiness and quality of life are just as important!

But what else can you do, then? If you have a child in your grade 5 who needs to be on the floor moving big magnetic letters around to spell words, then that’s just what he needs to do. (We could start a long discussion on whether or not this child really belonged in mainstream school, but for now that doesn’t really matter as he is there, in your classroom, and you need to teach him). Hopefully you have an integration aide and the opportunity to take that particular child out of the classroom for individual work a certain amount of time each week. But maybe you don’t? And even if you do, that will still leave the child in your classroom for long periods every day where he also needs work to do.

As mentioned before, the teacher in the lower grades of the school can often be a good help and their materials might be a place to start. Where I often run into the biggest problems is when it comes to materials for reading and writing. Just looking at a book from prep makes it clear that this is meant for a 5-year-old and not a 12-year-old – both to you, the child and the rest of the children in your class. There are some great materials to be bought, especially when it comes to books with “low ability, high interest” levels, but it’s not many schools who can afford buying them. Especially not if not many of the students need those materials, which often is the case when mainstream schools have students with moderate to severe learning difficulties.

To be honest I have often used materials made for younger children – because the level was right. I have borrowed resources from the lower grades, but to a much greater extend I have found materials online. There are some really great online sites with materials which are also suitable for older children with learning difficulties. (Some offer their resources for free, but other pages you’ll need to pay to sign up for). I have especially used online maths resources, for example to collect worksheets for the times when there is no integration aide in the classroom (or she is working with another child), and the lesson simply gets too difficult for the child to cope with. Doing different work from the rest of the grade can sometimes be a solution, but by carefully selecting the materials, at least I can make sure that not only the level is appropriate, but also the age, layout, pictures, text etc.

However, even with online materials and resources borrowed from lower grades, I have often fallen into a hole. Sometimes there just have not been what I have needed for a certain child anywhere! As mentioned earlier I have found it especially hard to find literacy resources for older children with moderate to severe learning difficulties. They know they are not 5 years old anymore, so why drag them through books about little kids starting school or learning to dress?? It just doesn’t make sense. There are a few online resources, but often the skill level matches the age level, so for older children the appeal is still missing.

What I have ended up doing a few times is making my own materials. It takes time, but sometimes I have found it necessary to do so. I’m neither a professional children’s author, nor an illustrator, so logically my results have been less pretty and interesting-looking, but in those few cases that didn’t matter as much. It was a positive change for those children to suddenly have something to read, and to work with, which was neither too hard nor too childish for them, and at the same time it was about topics they were interested in. You can’t do it for every single child in your grade, but sometimes the lack of appropriate resources just drives you to desperate measures, I suppose 😉

Here’s a few online sites with great resources, which I have found helpful:

http://www.worksheetworks.com/ – (A free site with a few good and different generators for math worksheet, really quick and easy to use)

http://www.k-3teacherresources.com/– (Has great flash cards and Dolch Sight Words resources, some resources you’ll need to sign up for)

http://www.smartkiddies.com.au/ – (Has really great math resources – worksheets as well online games and tests – you need to sign up, though)

http://www.teachthis.com.au/ – (Has great math and literacy resources – games, flash cards, posters etc., you need to sign up, though)

What is the best thing? – Teaching children with special needs

For the past years I have been teaching children with special needs in quite a few different settings. My degree says Early Childhood Teacher, but with all of my studying put together, I guess you could both call me a preschool teacher, prep teacher, special needs kinder / prep teacher, special needs carer, and a classroom assistant without being wrong! Besides my degree being… lets say inclusive, I also did a few extra courses 😉

Besides working with children with special needs being my job, it is also a great interest of mine. My aim is always the same, no matter the setting or the child – always to do the best thing for that little person.

However, one question always comes to my mind – what is the best thing, and who is it best for?

That question is probably one of the most difficult questions I have ever come across in my work, and I have had to re-think my answer again and again – for each child I have worked with. Sometimes one thing seems to be the right thing, and I start building everything around that, but then after a few weeks something might happen and suddenly the world looks different. It can be something the child does, something a colleague says, a thing I read somewhere, or something the parents comment on. It can be big or small – even the tiniest thing can change your opinion about something completely. And children develop and move (hopefully ahead!). Noting is ever static, not your students either.

However, the child’s development aside, as a teacher I still have to decide what to teach, what goals to set for each child, and what the best thing for that particular child is.

I have often had long and heated discussions with colleagues about this “best thing” or “right thing”. Even though we are both teachers and educated to take care of every single child in our class, we don’t always agree. In most cases I see that as a good thing, a strength. We contribute with different things, share ideas and open each other’s eyes.  But I wonder, can you educate someone to do the right thing? Or in this case, can you educate someone to decide what the right thing is for someone else? For our students.

Adults, whether in the position as parent or teacher, are, and have always been, expected to make the decisions for the children in our care.

As parents we decided when it’s bedtime for our child, when it’s time for dinner, where we are going for the Sunday outing, how long our teenagers can stay out… we make all the decisions, but the decisions are all up for discussion, aren’t they? As soon as our children are born, they show their likes and dislikes first with tears and smiles, later actions and words, and they are able to quite clearly let us know what they think is best for them. As adults we are still responsible, even when we let them take part in choosing, but our children have the opportunity to voice their opinion.

As teachers we also decide what is best and right. Some things can sometimes be up for discussion with the students, but it is not the majority of things. As teachers we are expected to make the decisions. That’s what we are educated to do.

We have the law outlining a lot of the where’s, when’s and what’s, though even when we feel put in a small box, there’s still enough space for us to make choices. What materials will we use? Which texts do we think can teach this specific subject the best? And so on. But it is us as teachers who are expected to make those decisions as professionals.

So we, as teachers, are educated to make the final decisions as to what the best thing to do is. The law has decided the outline, the subjects, but there’re still so many choices to make and decisions to take when we try to teach the students the best things in the best ways. But what when that “best thing” we have to make a decision about is something so central in a student’s life that it can interfere with… everything?

When working with children with special needs I have often experienced that teaching is, even more than when working with other children, about so much more than “just” teaching different subjects. It’s about life skills. It’s about very central and important parts of that child’s life, not just for that year, but for always.

Children with special needs have… special needs. They do not always do like other children and develop and move ahead seemingly smoothly. They sometimes need a lot of help to move on. Help we, as teachers, give them. Every day we make choices about what the best thing is for that specific child to learn. Do we keep fighting hours every day with reading in year 8, so “Tom” can learn to read the second list of the Dolch Sight Words and can recognise the nouns and verbs in a sentence, or do we chose to set other goals for “Tom”? Do we spend two hours a day with math in year 10, so “Peter” can learn his 5 times tables and 3-digit addition, or do we chose to set other goals for “Peter”?

What’s the best thing to do, and who is it best for?

And who decides that?

At the moment I have volunteered to assist a kid with special needs in his year 5 class. He attends the local primary school and has done so since prep, even though as early as kindergarten his parents were advised that it would be best for him to attend a school for children with special needs instead. However, his parents made the choice for him to include him in a mainstream school, for good and for bad.

When I first started working with the boy in the beginning of the year his math skills were limited to adding together numbers under ten and his reading skills were minimal – he was still working on recognising the letters of the alphabet. When presented with work he would often refuse and grumble, and he was not used to listening to any messages not given directly to him. I’m sure you get the picture, he was behind and did not get much out of the general classroom teaching at all. Most of the time he would either work with an integration aide or sit in the classroom drawing, looking at books or daydreaming. The aide was only in a one or two lessons a day, and the teacher was more than busy with a few other children with milder special needs and behavioural issues in the class, so I guess you can imagine what this boy was doing most of the time.

However, the boy was quite happy. He liked coming to school and would smile and chat happily with anyone who would listen. His social skills were limited, but he had made a few friends that he would occasionally chat to or play with during recess, and he also liked joking with his classmates. He had settled down in the class and the other children knew him and helped him along.

But the question still comes to my mind: What’s the best thing for this boy, and who can decide that?

Is a mainstream school the right place for him to be? Even with as much help as the teacher and the aide can give him, he often spends a lot of time during school hours daydreaming or looking at picture books, because he is not able to follow the lesson (and the aide is only in the classroom one or two hours each day). Is that the best thing for him? Is the best thing for him to keep working with his addition, learning to subtract 1-digit numbers, struggling to read a few sight words, and sitting starring out of the window, or are there other options? What about his lack in social skills? What about the fact that whereas his classmates gets one year older each year, he seems to still be five years old inside? What about his inability to do little things for himself like tying his shoe laces? What are the most important things for him to learn? Is mainstream school really the best place for him to be? No? Or yes? Because despite his difficulties, he does seem happy at school.

The boy’s teacher and the principal at the school, as well as the assessment team, all agreed that the boy would be best off at a school for children with special needs. He was even accepted at a school for next year. But is it up to them to take that decision? What about the parents? They are not sure yet and so far have wanted him at a mainstream school. They want him included, and is that wrong?

What is best for this kid? And who gets to decide that?

Another boy I worked with years ago was autistic and didn’t talk, or in fact didn’t communicate much at all. He didn’t seem to want to talk and resisted learning to communicate in any way the best he could. He would turn away, he would cry, he would physically try to push you away. It was a “no”.

But could we let a 7-year-old child decide what was best for him? Would you agree if your 7-year-old son decided to have lollies for breakfast? Or stay up watching TV till midnight? I guess not.

But what about this boy, should we let him chose? Even when he was choosing to exclude us, everything, from his world. Or should we decide what was best for him?

Are we right when we say learning to communicate would be best for him? Or should we let him decide not to, because after all he has Autism and sees the world in a different way than we do? I have heard adults with Autism say that people should leave autistic kids alone and not try to change them or make them fit in, but would that be reason enough for us to let this child decide not to communicate?

When trying to determine what is right for this child, shouldn’t we mainly be thinking about his happiness? Would the child be happiest not communicating and in his own world, or could learning to communicate, though not willingly, bring him some more happiness?

I must admit that in his case I, as his primary carer at that point, decided that communicating would be better for him. Even though he was not interested at first.

However, a main reason for me deciding that my choice was the right one, was because of my view on his “no” to learning to communicate. I believed that it was much more a “no” to the unknown and a “no” to something he did not see a use for, than a “no” to communicating as such. He had no idea what words were for. He had no idea that he could talk to other people around him. In fact, often it seemed like he didn’t notice there were people around him at all.

So in his case, we, as adults, as his teachers and carers, decided what was best for him. Afterwards I can say we did the right thing, but only afterwards. When the boy learned that he could talk and use sign language to other people to tell them what he wanted, when he was thirsty, when he was hungry or needed the toilet, and when we could explain to him what was going on around him, a lot of his big temper tantrums disappeared. He might not have wanted to learn to communicate, and it was a long and at times hard process, but in the end it meant that he was able to understand the world he was born into a little better, and after that he settled down and became more at ease.

In this case we made the decision that this was best for the boy. Some might still disagree, though.

And anyway, the question is still there: when can we decide that we are the right ones to make decisions about what is best for someone else?

What is the best thing, who is it best for, and who gets to decide?