Pathways to Potential Raising a Self Advocate

1. Pathways to PotentialRaising a Self Advocate Bonnie McKerracher Mum of Kathryn Bridge 18q22.31qter Presented to Chromosome 18 (Europe) Conference Rome Park Marriott, August 2016

2. Helping Kathryn to overcome the obstacles she faced to realise her full potential

3. Kathryn was born in 1980 in Glasgow, Scotland She had a twisted foot and an umbilical hernia, but otherwise seemed healthy. A record of Special Educational Needs was opened for her when she was three, though no-one knew why she wasn’t speaking in spite of her hearing loss. She attended a language unit from the age of 3 Our little girl was deaf, had visual problems, malformed feet, lack of muscle and was severely delayed developmentally. She started mainstream primary school at 5½ She wasn’t given hearing aides until she was 6. A speech therapist and a teacher for the deaf saw her in school for a half hour each during the week. Her teacher did not like having her in class.

4. She became an infant delinquent in Primary 1, and I considered teaching her at home. But Kathryn LOVED school!!! By the time she was 7, we were seeing 10 different specialists. And we STILL didn’t know what was wrong with our daughter. Diagnosis at last! 18q22.31qter A chance meeting led to a diagnosis of Chromosome 18q minus Suddenly she was a child with problems instead of a problem child.

5. The geneticists gave us information about Unique The Support Group for Rare Unspecified Chromosome Disorders in the UK and we realised how lucky we were that she was not more disabled Had she been diagnosed sooner, with the medical information available at the time, she would have been sent to special school. That would have been easier for us all! Okay, so enough of the history lesson on Scottish Education in 1980s… How did Kathryn move from disruptive student to model pupil? She never did.

6. 18q- was an unknown condition. None of her teachers knew anything about it, and neither did I. I’m still learning about how it affects my daughter… I had to become an advocate for her without knowing that I was doing it, or what I was doing. 18q- affects children in many different ways, so as a parent I had to deal with Medical / Therapeutic Educational Developmental / Social challenges she faced We had no laundry list of possible ways she could be affected. Thanks to Chromosome 18 Registry and Research Society YOU DO – USE IT!

7. Medical / Therapeutic Hearing loss vital that hearing is assessed early and aides fitted if required. Hearing must be checked regularly – it can fluctuate, and affects their schooling. Communication Speech was severely delayed: Kathryn attended a pre-school language unit part time for 2 years Develop a toolkit of methods of communication your child can and will use! If deafness is a feature, consider adding sign language, too. Speech and Language therapy Weekly from 3 years – 10 years with regular breaks from therapy. SLT used Makaton as a breakthrough language to start communication. Physio/Occupational therapy Everything took MUCH longer to learn, and specialist help was useful Hospital stays and appointments Hospital play: lots of role play, Playmobil hospital toys, talking about doctors and nurses and therapists. Advice from Action for Sick Children

8. I learned that the way to get the best treatments for her was to ask questions, and to prepare for every appointment I could in advance. Keep a journal and update it after every appointment!!! I wish I had Loose leaf, A4 binder with dividers is ideal for this Summarise to a single page regularly, and take/ email summary with you to new clinics so that your child doesn’t have to listen to their medical history over and over again. Make sure that he/she is included in all discussions about their health, and has a chance to tell you and the medics how they feel about treatments proposed, even if they don’t have much choice in those treatments.

9. Education In Primary School Be available when school needs to see you. An Educational Psychologist was assigned to her. That person’s job is to help school handle the child, not (then) to help the child manage themselves. Her Record of Special Educational Needs was the most important document she had even though she knew nothing about it. I NEVER let anyone take it away from her, though it had to be amended regularly Regular sessions from peripatetic teacher for the deaf and speech therapist: Kathryn was withdrawn from class for these sessions – not ideal, but necessary then Regular case conferences: if there’s a problem, annual isn’t enough Class teacher, psychologist and parent attended Be a concerned parent, no matter how angry you may feel. Take cake!

10. Disruptive behaviour in mainstream is a huge problem. A pattern of behaviours and responses to those behaviours meant that the best option for Kathryn was to move schools. The educational psychologist supported this decision when Kathryn was 10 years old. As the parent of one of those disruptive children, I had to be seen to be supportive of the school and of my child as a member of the class. When Kathryn’s behaviour was unacceptable in school, we spent a long time talking about it in the evening: what had happened, what she had done, what she could have done differently. She didn’t retain the idea of consequences. She wrote apologies when we decided that it was called for.

11. In High School We still didn’t know what we didn’t know: School became a series of MONTHLY case conferences, and over the years we discovered that Deafness was a combined sensory neural / conductive loss which fluctuated: She needed a lipspeaker for the mandatory modern language course Malformation of vertebrae in her spine led to chronic pain Arthritis developed in her foot Low muscle tone meant that she couldn’t write for long periods She was socially isolated due to her challenging behaviour Autistic tendencies were part of the syndrome: we didn’t know that, though the signs were there. She left Kilsyth Academy with one higher and one on appeal, and was determined to become a geneticist.

12. She spent the next 3 years travelling 40 miles to James Watt College in Greenock, where she was assigned a communication support worker for each class. She was awarded the Sheila Smith Prize for Science for her work on 2 projects about 18q- During her research, she discovered the Chromosome 18 Registry and Research Society based in Texas 6 weeks later we attended our first conference in the US, and our lives changed. By 2008, she had achieved 2 Masters degrees from Glasgow University. Support was put in place, but wasn’t always ideal, so she worked out what she needed.

13. Developmental / Social Kathryn found it difficult to make friends, and I found it difficult to help her with that. There were no clubs for people with disabilities locally, and she wasn’t disabled enough for those that did exist. Reading ‘Making Friends’ by Andrew Matthews helped, I think. If your child has a hobby with a club attached, get them to it! Kathryn went to gymnastics and dance, but should have been painting models at Games Workshop instead…Martin showed her how Look at ‘Creative Expression Activities for Teens’ by Bonnie Thomas Chromosome 18 Conferences became the focus of our year: Kathryn and all of her friends grew during the four days together. Time spent there kept her going for the rest of the year. Each summer, we concentrated on adding one new ‘skill’ and so she became more flexible, and less different socially.

14. Kathryn did all of this herself, but she didn’t do it all by herself. She learned to use tools which we found ‘MindMaps’ by Tony Buzan And which she developed for herself 2NoMe Self Advocacy Tool 3 years ago in a chance conversation with Jannine at an airport I learned that many of the people affected by 18q- have real problems with executive function Huh?

15. Executive function is a set of mental skills that help you get things done. These skills are controlled by an area of the brain called the frontal lobe. Executive function helps you: Manage time Pay attention Switch focus Plan and organize Remember details Avoid saying or doing the wrong thing Do things based on your experience When executive function isn’t working as it should, your behavior is less controlled. http://www.webmd.com/add-adhd/guide/executive-function

16. Explains a lot Kathryn and Martin Bridge Me (they bought the mug for me two days after Martin first came to visit)

17. Now we all know that ongoing support is a necessary part of our lives. Trenna and Doug live ten minutes away from Mr & Mrs Martin Bridge. Their on-the-spot support includes help with home maintenance, getting them to appointments and regular dinners My self appointed role is to be ‘a vigorous coach from afar’ 13,000 miles away I make sure that they have set up systems they can use to help remind them of chores which have to be done and bills that have to be paid…the boring stuff

18. Denise Moon, who is here with us this weekend from California with the magnificent Michelle Moon wrote: Hide your fear for your child, believe in them. If you believe they will fail, or shelter them they can't experience life. In experiencing life, we learn how to adapt. We will not be there forever to provide and protect them. The world is a safe place, and 99% of the people will help, support and encourage your (adult) child.

19. Veronica Wain, Allycia’s mum in Australia wrote: …one of the keys for us - look towards those who have gone before us - find your mentors and surround yourself with those who can take the ride with you - and realise that not everyone, family in particular, are equipped to walk with you when you need them most. Take this for what it is - their place on this road is different to ours, be grateful for those who can and understand that the best thing we can offer our children is a community that has their interests at heart. The community we build around our children is one of choice, intent, vision and purpose. Because our lives are filled with purpose - our children rely on us for so much more for so much longer (our lifetime) we forget that there are others we will meet, that are looking for purposefulness and a place to contribute. When these gems come into our lives, we need to honour them and realise they are indeed rare. In the midst of some of our darkest days it is difficult to be positive and have hope against some pretty bleak scenarios that we hear about on a regular basis, however, it is necessary to dig deep and continue to be people that others choose to be around. Whilst anger and despair are completely justified a lot of the time, these are poor companions and whilst we can indulge ourselves from time to time, the quality of our lives is diminished if we "stay" here too long. I could never have imagined where Allycia's life would take us and in those rare moments, when I stop and reflect I marvel at the experiences, the joy and the learning that her arrival has brought.

20. Dream big for your child, until they can dream for themselves. You know much more now than we did then, And it turned out fine.