The Blog

Living With Mosaic Down's Syndrome

We eat cake and drink tea and I feel strangely at ease with this person who I have not seen for 25 years. What a life, what a trooper. She's worked hard to overcome stigma, to get ahead, to bounce back and to be who she is, who she really is.

Claire May Minett talks with Dr Jo Mitchell, Educational Psychologist at Orange Psychology, about living with Mosaic Down's Syndrome (MDS), a rare form of Down's Syndrome affecting Claire's learning and social development. Drawing upon 12 years' experience working with children, families and young people who face the daily challenge of living with disability and the stigma attached, Jo asks Claire about the trials and tribulations of growing up with MDS from childhood, to relationships and employment. As previous school mates, their perspectives as children in the 80s and 90s are contrasted with their perspectives now, as adults with different lives. Both have an understanding of the impact of disability, but for very different reasons. Whilst Jo has developed a career around trying to understand it. Claire has lived with it for 38 years.

It was a warm day in Year 6 in 1989 when I recall Claire deciding to leave the classroom. We were 11 years old and we were doing Maths. Claire was quite clearly distressed; red in the face and pushing her glasses further up her nose, she shouted angrily and stomped off. We turned to watch, but she usually just sat somewhere out of sight. Sometimes she just needed a little time to be alone. With a transfer to special school 6 months after starting secondary school, Claire seemed to just disappear. 25 years later, and equipped with a passion for inclusion and child development, I meet her in a coffee shop in Rochdale. I want to understand her story, and she tells me it with earnest.

Claire seems surprised at my memories and says that she doesn't recall school very well,

'School was a blur, mixed with stress headaches' she says 'ESPECIALLY in maths!'

This reminds me of an image; her her head on the table, quickly disengaged as if someone had switched her off. These episodes unfortunately attracted the attention of the others. We remember those who appeared to take pleasure in her distress, and her eyes glaze over a little and I detect a sadness.

'Were we friends Jo?' she asks, her eyes are wide and hopeful.

I want to say yes. But I don't recall a friendship. I recall an understanding, and maybe some kind words every so often. I feel guilty that I can't offer her more.

She touches my hand and softly says, 'you're lovely, thank you for listening to me'.

I am reminded that Claire is still vulnerable, and that others will still misunderstand her, perhaps even shun her. She is different, she is unique. A familiar feeling washes over me from childhood, and it's one of wanting to protect.

I learn that in Down's Syndrome, 'mosaicism' means that some cells have the typical number of cells, and others don't. In Claire's words;

'MDS is like Down's Syndrome but not all the cells are affected, just some'. 'Then there's translocation Downs' she adds, 'but things get complicated there'.

I smile with appreciation and wonder if it ever becomes frustrating having to explain 'it' to others.

The International Mosaic Down's Syndrome Association report that Mosaic Down's Syndrome (MDS) accounts for between 2-4% of the total cases of Down's Syndrome. 1 in 27,000 people are diagnosed with MDS, but there are difficulties associated with misdiagnosis and many individuals with the condition are never diagnosed. The majority of children diagnosed with MDS experience delays in developmental milestones, compared to typically developing peers, with the most prominent delay usually being in speech and communication. Some research points to specific difficulties with maths, but generally it appears that the strengths and needs of people with MDS vary, much the same as other syndromes or developmental conditions.

Claire tells me that for her, she has problems learning things quickly and needs help with numbers because she can get confused easily. She also needs help to understand social norms. She only learned later in life, for example, that it isn't appropriate to hug strangers in the street.

'Do people not make friends at work?' she asks.

I'm not sure how to answer. This is something someone has told her apparently.

Claire also used to have obsessions, and admits that she probably still does. At school, she talked incessantly about 'Ant and Dec', the TV presenters. She loved them at the time she says, and has subsequently applied to X-factor 8 times! Reflecting on this now though, Claire says this wasn't about a school girl crush;

'I wanted what they had, a connection, a true friendship'

I am suddenly struck by the emptiness of this statement. Time and time again I meet young people who just want to 'belong'.

Despite the sensitivity of the memories, Claire remains calm. I'm taken aback at how astute she is, and I quickly check my own assumptions given my surprise. Claire is funny, she's quirky, and she's a thinker. Her disability doesn't define her, her personality does.

I share with her that I remember her disappearing from school one day, never to return. Claire recalls this as being quite a turning point;

'They couldn't cope with me at secondary school.. they couldn't deal with my personality.. I think the teachers sent me there'.

I know from my own experiences that most children with Downs Syndrome now attend their local mainstream school and wonder whether things might have changed since the early 1990s when Claire was transferred. In fact, it was only from 1981 that children with special educational needs could be maintained in 'ordinary schools' (Education Act 1981), but the message was much stronger by 1996 (Education Act of 1996). A child's right to mainstream 'inclusion' was strengthened again with amended legislation (and case-law) including the Special Educational Needs & Disability Act (SENDA) 2001 and a revised Code of Practice in (2001). Whilst each case is always different, I find that there are many freely available resources to help schools and families create effective environments, including the Primary Education Support Pack provided by the Downs Syndrome Association.

In essence, I learn that Claire is grateful of the educational experience she received at special school, because she felt understood there. But I still don't know why our school couldn't cope with her personality, as to me, Claire could have been 'understood' anywhere. Removing barriers to disability is not about locating the problem with the person, as Actress Sally Phillips so eloquently pointed out in the recent BBC2 documentary 'World Without Downs'.

We discuss personal events which have made her life challenging. She has fallen in love, she has been hurt, and she has experienced prejudice and bullying in both personal and professional relationships. She says there have been times when she's separated herself entirely from her disability, refusing to acknowledge it, hoping that it almost didn't belong to her. Claire describes discomfort in learning 'how Downs she is'. Her cells get tested regularly apparently, where they look for the number of cells which include 'trisomy 21' and she receives a percentage score subsequently.

'It went up recently' Claire tells me with a deflated expression.

I wonder quietly if disability can do that to you, make you feel separated from yourself?

Although she's had jobs she's enjoyed, Claire has experienced difficulties with the social demands of employed work. Easily irritated, confused with social rules, and erratic mood swings have added to the pressures of sustaining employment. However, Claire now represents families with children with Mosaic Downs Syndrome in her spare time, as a self-advocate for the International Mosaic Downs Syndrome Association. She travels, she talks, she listens, and she supports others who experience MDS because she understands. Claire enjoys the 'buzz' of creative spaces like studios and still wants to be in the entertainment industry. I recently saw her on the BBC3 video, 'Things people with Down's Syndrome are tired of hearing', and she also contributed to the making of 'A World Without Down's'. She talks emotionally about her appreciation for Sally Phillips, and the work of Professor Sue Buckley.

Finally, Claire thinks that love shouldn't be conditional, and that everyone should be validated for the emotions they feel regardless of whether they are understood or not;

'No matter who you are, and what you do, there is never an excuse for manipulation', she states emphatically.

She is so right, and I smile at her in absolute agreement. Validation and acknowledgement, the essential ingredients for developing a secure sense of self.

I contrast the image of Claire now with the one of her at school, but the comparison appears to make her immediately sad. Claire seems affected by my memories, and I suddenly become a little more cautious in what I share. I fumble around to try to make it better, but realise that you can never really understand what living with disability is like unless you have actually experienced it yourself.

We eat cake and drink tea and I feel strangely at ease with this person who I have not seen for 25 years. What a life, what a trooper. She's worked hard to overcome stigma, to get ahead, to bounce back and to be who she is, who she really is.

Good for you Claire.

Keep doing it.

Keep being you.