Viral Video about a Boy Singing to his Baby Brother who has Down Syndrome

A few days ago I was tagged in a post on Facebook. This often happens. My friends see things that they think I would like to see. Usually they are videos or pictures which relate to pineapples (from my book Ride High Pineapple) or Down syndrome, as my youngest daughter has DS. The post was a video concerning the latter.


When I get tagged and go to look at the posts concerning Down syndrome, sometimes I am touched by them, sometimes I am inspired by the person as I know how hard it is for a person with DS to achieve certain things in life, due to their cognitive and muscular limitations, and sometimes I am annoyed by them. 


I usually have a reaction based on the comments below the post, and also based on the person or people in the video, or what captions there are. Having a child with Down syndrome has allowed me into a window that not a lot of people see into. If I related it to a car, I don’t just look from the outside seeing the state of the paintwork or the scratches on the doors or how shiny the rims are, I sit in the seat beside the person sitting in the backseat. I can see the steering wheel, the brake pedal, the seatbelt, the chewing gum stuck in the compartment, and the dirty hairbrush in the door. You get the idea I am sure. 


So the post that prompted this blog post was a video of a young boy, who was 6 years old, holding his baby brother, looking down at him and singing to him. Of course his baby brother had Down syndrome. The boy was singing the song, 10 000 Hours. This video had been filmed, subtitles added and then shared, and it went instantly viral. This is the YouTube version:

The video to me was okay. 

I have pictures of my two eldest reading to Jessica my daughter when she was a baby. I have a picture of my son at 3, sitting with her, his face touching her face, while she was propped up in the clothes basket with pillows. I have pictures of my 6 year old holding Jessica’s bottle as she couldn’t. Now were these pictures on the internet? No. Did I have a video of them singing to her? No. But I know they sang to her, and danced to her, and played with her. I remember Jessica tummy crawling after them and stealing their toys, and her older brother and sister getting angry at her. All normal kid things.


When Jessica was growing up, my kids didn’t go, ‘Oh she has Down syndrome. We should treat her differently.’ No way did they say that! In fact if she was having something different, they protested. They wanted her to be treated the way they were. 


It’s only been since my eldest two have been in high school and they’ve seen me battling the barriers and prejudices in the education system that I’ve talked to them about the prejudices and attitudes in society.

Siblings are a sister or brother first. They don’t know how society feels about Down syndrome. They don’t know that by treating their sibling the same as a ‘normal’ sibling, that they are being inspirational to some adults in the world. 


If Down syndrome wasn’t seen as such a terrible thing to be born with, and if obstetricians didn’t put in people’s heads that it had to be tested for because they believe that a person with DS won't never lead a successful life and will be a burden. And if society embraced differences as a whole, then people wouldn’t be seeing these videos as inspirational and they wouldn't be going viral. When I was looking at the post on Facebook I read through the comments and there were women saying they were crying, and everyone else felt all warm and fuzzy inside.


Me, the practical one wrote, my own comment, which was totally different to the ones already posted. It was my comment which triggered this blog post. I told them that the boy would have no idea that the baby had DS. He was just singing a song to his baby brother. A song his mother would have taught him. 

Obviously his mum knew what she was doing. In teaching him and videoing it, and releasing it out onto social media, she hoped people would see it, and comment, and feel all warm and fuzzy, and probably in the hope that there would be more acceptance of Down syndrome in the world. I can’t blame her for wanting to do that. If I am honest I post things about my daughter achieving things, just to show others that Down syndrome does not stop her from leading a good life, from doing the things she loves to do, from going to regular school with average kids, and from being happy. 


Now I have to say here that my daughter is happy because she knows her family loves her and she is valued. A valued person will go on to have a good life. Knowing you're valued gives that inner self-belief that a person has a place in the world, and even if they are knocked down by disbelievers, they will stand back up again and keep going.


I would like to leave you with a piece of friendly advice. If you see a post or a video of a baby with Down syndrome, look to see what it is. I have to reemphasis that I am impressed with many of things that people with DS are achieving. For example, I look at the gymnast who I know has worked doubly hard to get to her goal, because of the syndrome’s extreme low muscle tone. I look at the business owners who are working and making a genuine living. 

From the moment my daughter was born I have watched a young lady with DS who lives near us. I had never noticed her before the birth. I noticed she lived in a unit, she went to work, she shopped independently, she was out exercising… basically she was doing what average adults do, and what we were told our daughter would never do. This lady soon became our role model. 

If the post you're looking at is something showing a child or adult with DS achieving something that regular or average people do, that would be difficult for them to achieve because of the prejudices and barriers in our society, share it. Definitely share it. But if it is something like a 6-year-old boy singing to his little brother or sister, which is something all kids normally do, unless they are jealous, then think about why is it being shared? Is it being shared because there is so much prejudice and wrong beliefs out there in society that the author feels the need to put it out in the world. 


Just a thought.

Don't Limit Me - A Poem

Don't Limit Me

I am not broken like a smashed car, so you don't need to fix me...
Don't limit me
I am not a retard or an idiot or stupid or any other insult you throw at me...
Don't limit me
I can learn when taught so I understand, and I will exceed your expectations...
Don't limit me

I am not a label like on a jam jar, I am multi-faceted like a diamond...
Don't limit me
I am not the sum set of my chromosomes - no that is way too narrow...
Don't limit me
If you have met one person with my syndrome, you have met one person with my syndrome...
Don't limit me
 
I will teach you about your limiting beliefs which aren't mine...
Learn from me

I am not an archaic view of disability - I will not be hidden away or segregated...
Don't limit me
I am not your inspirational porn - don't cry and say I'm amazing because I am doing well...
Don't limit me
I can think for myself and tell you what I want - and that's to be in control of my life...
Don't limit me

If you expect and accept little from me, that's exactly what I'll give you...
Don't limit me
If you speak negatively to me, be aware it will be returned through my behaviour or words...
Don't limit me
If you shove me to the side or isolate me, I know what that means - you don't value me...
Don't limit me 

I will show you your limiting beliefs if that's what you ask for...
Learn from me

Give me wings to fly and I will soar high and free like eagles do on wind currents...
Don't limit me
Build up my strengths and talents so I can reach my full potential...
Don't limit me
Accept me as I am but have high expectations that I will learn and grow and be successful...
Don't limit me

And while you're rethinking your prejudices, know that I am perfect just as I am, and if you take the time to get to know me, you will find that out.


- by Jenny Woolsey ©2019
Mum to Jessica who has Down syndrome

To learn more about Jenny visit www.jennywoolsey.com

Don't Presume my Child Goes to a Special School

Yesterday I took my youngest daughter, who is 12, and was born with Down syndrome, to see a new Occupational Therapist for an assessment. With my daughter's access to NDIS (National Disability Insurance Scheme), we are now able to utilise this service, and I am thankful to the government for this.

Our goal for my daughter having OT is to help build and strengthen her fine motor skills so she can be independent with her life skills and be more proficient with her handwriting, which she finds difficult due to the low tone in the muscles in her hands.

The OT was lovely, and I felt a warm connection with her straight away, as did my daughter. As the assessment progressed and a conversation ensued, which included the obligatory questions such as her age, her likes/dislikes - those types of things, one question made me stop in my tracks and triggered me to write this blog post.

The question was, 'What school does she attend?'

I answered in my casual way, ' Said High.' (I am leaving out the name for my daughter's privacy). My daughter wss wearing her uniform so I didn't think it needed much more emphasis.

The OT's response was interesting. She replied, 'I used to work at A Said Special School (name changed for privacy purposes) and I went to meetings there (at your school).'

The penny dropped pretty quickly. She presumed the school I had given was a special school, not the local regular high school.

I quickly clarified it was the mainstream high school and I was against special schools. She then asked how my daughter was going and we had a good chat about how well she is doing.

Now I am writing about this not to criticise the OT, because as I said she is lovely and we will be going back to her. I am writing this blog post because I think her response is the world's commonly held presumption... that children with Down syndrome go to a special school.

Now this wouldn't be a commonly held presumption if it wasn't so.

In a mainstream high school of approximately 1300 students, my daughter is the only child with Down syndrome. She was also the first child with DS to go through her primary school. It is not the norm. And why not?

Why is there a strongly held belief in Australia that students with Down syndrome will receive a better education in a segregated setting with other intellectually impaired students? Where will the stimulation come from? Where will they experience higher order thinking and thought provoking conversations? Where will they see gifted and talented students? Where will they be exposed to role modelling of what is expected by society? When will they be able to experience the whole range of activities that are provided in a regular school?

When Jessica was about to enrol in Prep we were shown through the early learning classrooms of the special school as they tried to sell it to us as the place our daughter should attend. Yes we could see the students were accessing the curriculum, and one of the little girls was learning to read. But I also saw things I didn't want my daughter to spend day in and day out with. I saw children with poor communication and behaviour, and a general setting that felt like a prison, with multiple locked gates and doors, and fences everywhere.

She was 4 years old at the time and we could already tell that our daughter modelled her behaviour on what the other children were doing.

We had seen a difference in the two settings she was attending. In the local C&K mainstream kindy, she was writing her name, speaking, using the toilet, trying to read books and do what the other children were doing. In the special school kindy she was only using sign language as that's what the others were doing, she was acting like she was helpless and barely used the toilet.

In our hearts we knew the mainstream school would be the best place for her, but there was so much pressure to keep sending her to the special school - and that's where children with Down syndrome went... why would we buck the system?

I am thankful to my school principal, as I wanted to send her to the school I was teaching at, who was not a gate keeper and was happy to have our daughter. If he'd been against having her, I might have been swayed to stay at the special school as this was before I became educated on inclusive education.

My husband often drives past the local special school when it is play time and he has told me about the litttle boy who stands at the fence line watching the cars go past, all on his own, and of a little girl who again sits on her own, under a tree, looking very sad. Do these children want to be there or would they rather be in a regular school with regular children being stimulated by the variety of activities that happen there?

One person who has never presumed my daughter goes to a special school is her paediatrician at the hospital we attend. He has always been excited to hear how she is going, and I love that. I hope he takes that knowledge that my daughter is doing well and passes it on to his colleagues and student doctors.

I read an article today on Facebook about  a lady, Ann Greenberg, who lived in New York in the 1940s. Her child, Jerry, was denied access to a regular school due to seizures and a developmental delay. She had a friend whose baby had Down syndrome and was told to place the baby face down in the pram so no one could see it. These ladies went on to set up their own school which grew larger and larger over time. Essentially they set up a special school system though not identified as such, and in 1953 came under the banner of the National Association for Retarded Children (NARC). Of course the parents in doing this, wanted their children to be educated, and I commend them for that. But because it happened in the 1950s doesn't mean it still has to be happening now.

https://www.ahrcnyc.org/wp-content/uploads/2015/10/History_Of_AHRC.pdf

I conducted a Google search to find out what is being said about special schools to parents, because there are plenty of parents who want their children in these segregated centres. This reality is seen in the building of new special schools, one of which is in my region.

I think these points I found listed on a UK site sum up the basic benefits that are stated by most:

• Class sizes are smaller, even exceeding one-to-one help in some cases.
• Work is geared to the child’s individual needs and linked carefully to their own targets.
• Teaching is matched closely to learning styles and strengths.
• Children have a peer group with similar needs, so they don’t feel different and find it easier to make friends.
• Staff generally have an excellent understanding of the needs of the children and how best to teach them.
• Progress is very carefully tracked and monitored.
• There are strong links with parents.

Like their mainstream counterparts, special schools must teach the national curriculum and use its assessment procedures, and they have broadly the same duties and responsibilities to children in their care as mainstream schools.

https://www.goodschoolsguide.co.uk/special-educational-needs/schools/special-schools

This sounds pretty convincing doesn't it, particularly if you do not know the research into segregation and how detrimental it can be for the child, and the overwhelming research that says children do best in a regular setting?

 http://www.include.com.au/resources/

Also when I look at these so called benefits, I say 'that is what happens in a mainstream setting', apart from point 1 where there are 6 or below in a class in a special school, or point 4 where the students are of a similar intellectual level.

I wish there were more parents saying they don't want their child in a class of 6, or to just be with students of their intellectual level. It is an illusion that this is a better system.

My daughter will always be interacting with higher achievers so she can hear vocabulary and topics and discussions that will stimulate her brain, and make her brain construct new neural pathways and make new connections in her brain.

The other 4 points listed above happen in mainstream high school. I have constant communication with my daughter's school, I know her work is being monitored just like every other student's is, the pedagogy of teaching and learning is a constant focus in the school and my daughter has an ICP (Individual Curriculum Plan) which links to the curriculum at the level she is at.

With 'diversity' being a buzzword at the moment, it is important for those of us who truly believe in inclusive education, to keep on advocating for our children, and educating  parents, health professionals and politicians, so the children in future generations will have their rightful place in mainstream schools and there will be no presumptions about a child attending a special school, because special schools won't exist.

To find out more about Jenny, visit www.jennywoolsey.com

I Salute General Charles De Gaulle, a Proud Father of a Child with Down Syndrome

 I Salute General Charles De Gaulle, a Proud Father of a Child with Down Syndrome

In 1866 British physician, John Langdon Down, named Down syndrome. While working as the medical superintendent at the Royal Earlswood Asylum he described the characteristics of people with Down syndrome residng there, as being similar to the people living in Mongolia (he had a series of ethnic race photos he compared them to). He believed people with Down syndrome were a result of ethnic degeneration. The term 'Mongolian idiocy, Mongoloids and Mongolism' became the norm. It wsn't until the 1960s Down's theory of Mongolian origin was discounted. This was after the French Pediatrician/Geneticist Professor Jerome Lejeune discovered that people with Down syndrome had an extra chromosome - three of chromosome #21, and the syndrome was observed across many ethnicities. The term Down syndrome and Trisomy 21 then became the accepted terms. 

During the first half of the twentieth century, the majority of children with Down syndrome were placed in institutions like the one above  – frequently soon after birth. The parents were convinced by doctors that the child was less than human and their needs would be so great, their families would not be able to raise them. The parents were told that the child would be taken good care of. These children were “warehoused” in large state institutions – often in deplorable conditions – locked away so that the rest of society could not see the horror of their lives.

As a parent of a child with Down syndrome, when I read this history, blood boils in my veins, and when I hear stories of parents who bucked the system and stood strong, I rejoice. Today, in 2019, there are still many barriers and prejudices, towards people with Down syndrome. I have battled them and will continue to I am sure. I refer to low expectations, being excluded and segregated, 'she's so amazing' comments when my daughter is doing what other regular children are doing, 'inspirationnal' posts about adults with DS doing ordinary things such as working and so on. 

Thankfully there were parents throughout history who refused to give their children to institutions and chose to raise them as ordinary children and give them ordinary inclusive lives. Let me tell you about one such set of parents, General Charles De Gaulle and his wife Yvonne.

General Charles De Gaulle has been well known throughout modern history as the leader of the Free French Forces. Something less well-known was that his youngest daughter Anne (January 1, 1928 - February 6, 1948) had Down syndrome.

The public perception at the time, was Down syndrome occurred because of the parents' alcoholism, venereal disease or from ethnic degeneration as I talked about above. The De Gaulles rejected these fallacies, and refused to put her in an institution, instead choosing to raise Anne like their other two children at home.

It has been said often that Anne was Charles' favourite child and he called her, 'My joy'. Charles was described as a man who ranged from cocky to stoic by nature, but a loving happy father, who would read stories and sing songs to Anne. It is said that he showed Anne an affection that he rarely showed others, even those in his own household. Anne was raised to feel no less or different than anyone else. (I love this!)

Charles always carried a photo of Anne with him, and in 1962 the photo stopped a bullet from ending his life in an assassination attempt.

In 1948, Anne succumbed to pneumonia, a month after her 20th birthday and died in her father's arms. Upon her death, Charles is said to have remarked 'Maintenant, elle est comme les autres.' ('Now, she is like the others.'). When Charles died, he was buried beside his beautiful daughter.

***

I had goosebumps when I first read this story, because I know how hard it would have been for the family to raise Anne with society's prejudices.

Stories like this one inspire and motivate me to continue advocating for people with Down syndrome and to show society that these people are valued, worthy and deserve to have ordinary regular lives like everyone else does. And it is an ordinay regular life, full of love, that I am striving to give my daughter, 'My joy'. Thank you, Charles and Yvonne De Gualles for all that you did for Anne and for future generations.


Jenny Woolsey is an author and speaker on embracing difference, and can be contacted at jenny@jennywoolsey.com or at www.jennywoolsey.com

Down Syndrome

D is for Down Syndrome

Last year I wrote a reflective piece about my daughter Jessica, for Down Syndrome Australia. As tomorrow is World Down Syndrome Day, I thought I would share it again in this blog.

***

“I think your baby has Down syndrome. Why haven’t you been told already?” said the frank geneticist when we took our one-month-old daughter for diagnosis. Shock, like a cattle prod slammed to my forehead, shot through me. The vision of her slanted eyes I had noticed when she was born, zoomed around my brain. I felt numb. I had known there was something not quite right with Jessica – she slept way too much and had feeding problems – but no one we had seen for help had mentioned Down syndrome.

The paediatrician at her birth had directed us to the geneticist who we were seeing due to another family genetic syndrome. The wait to hear what the blood test revealed was excruciating. My reaction to the ‘positive to Trisomy 21’ news was horrific. I didn’t want to look at my baby or touch my baby. I spiralled down into post-natal depression and I was filled with fear. I couldn’t see a bright future for my daughter, and the “I’m sorry” from well-meaning friends didn’t help the situation.

My strong feelings made no sense to me. I knew absolutely no one with Down syndrome. Somehow, somewhere during my life, I had picked up that Down syndrome was a really terrible thing for my child to be born with, and for my family to have to deal with.

Now, nine years on, I wish I could go back in time and talk to the terrified mummy I was. I would softly tell myself – it is going to be okay. There is nothing to be scared of. Your daughter will develop her milestones, she will talk and sing, she will have friends, she will love swimming, she will go to mainstream school and be involved in extra-curricular activities, she will have her own personality and talents, she will have a vivid imagination, she will learn independent life skills, and she will bring much joy to your family and others around you. You will love her, cry over her achievements, advocate for her fiercely and she will be a light in the world. It will not always be easy, but that is a typical life. Your beautiful daughter will show the world that having Down syndrome is just one part of her, it does not define her.

(Jessica is now ten).

***

Today I saw in my Facebook memories, a youtube video I had made when Jessica was 5 years old. I thought I'd share that too. 

***

A final thought... There is still a long way to go before people with Down syndrome are fully accepted as valued human beings. There is prejudice in a lot of people's hearts and many neotypical children see their peers with Down syndrome as weird or different. As adults we must show children that they need to be kind to others who are not like themselves, reach out to these other children and extend a hand of friendship. From my personal perspective, all Jessica wants is to be accepted, to have friends and for people to be nice to her.