Advocating for your Child Simple & effective ways to make it S.M.A.R.T

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1 Advocating for your Child Simple & effective ways to make it S.M.A.R.T Canadian Down Syndrome Society Annual Conference Montreal, Quebec Sunday May 29, 2016 Jennifer Crowson and Ingrid Muschta

2 Your speakers

3 My name is Ingrid Muschta Born in El Salvador Studied Engineering in Canada Have a wonderful husband & two wonderful and busy children! I serve as the Communications Director for my local Down Syndrome Association I am grateful to be able to speak to you TODAY!

4 My name is Jennifer Crowson I was born in Scotland and raised in Canada I am Social Worker and Researcher and have worked with children and youth for many years I am married to a lovely gentleman named Jonathan I have three fantastic sons, a female cat and dog (my daughters) Current President of the Down Syndrome Association of Hamilton

5 Why are we here?

6 2010 -My son Alexander was born. Only 24 hours into his life, we learned he had Down syndrome. We knew very little about Down syndrome. We were shocked, scared, worried, didn t know what to say or do. We began to read much about it and became anxious. There was a lot of negativity.

7 December 2011, I went into my 20 week ultrasound expecting to hear I was carrying the little girl I had hoped for. I was told I was carrying our third boy and... there were some soft markers for Down syndrome and Cystic Fibrous I had an amniocentisis and three days later, a counsellor called to tell me our son had Down syndrome I was shocked-quite sad, but with time I became inspired to learn and excited to meet our third boy.

8 And then we met...

9 How is life with Alex? Some challenges, yes. But life is much more the way it was with our first kid! Halloween fun Fun in the sand! Love school! I play soccer Love the water Love rollercoasters!

10 Life with Owen Love at first sight My first 1 km charity run/walk this year with my big brothers I love to play with my friends at the park I love playing in the sand with my Dad I met this gentleman once I love my birthdays and my mum loves throwing parties I enjoy going to my friend s birthday parties I am learning to ski and love it I am learning to play the piano

11 And that is how this journey began We have knowledge that life can be quite normal for people with Down syndrome and their families We have knowledge that people with Down syndrome are JUST LIKE YOU and me We now have to share this knowledge, to change people s perceptions We are taking action and we want to change the world for Alex and Owen!

12 Defining Advocacy Advocacy -the process of supporting a cause or issue. For us all this cause is our children! Advocacy can take many forms: Speaking UP Drawing attention to an important issue Directing decision makers towards a resolution Working with others to make a difference

13 Perception: Important in Advocacy PERCEPTION: It is how your 5 senses make sense of the world The word is often used to speak about how people see other people. Perception changes from person to person - we are all different! The way people perceive or see people with Down syndrome determines how they would treat that person and in turn how OTHERS will treat them. Advocate for an assume competence attitude

14 Perception: Important in Advocacy The illustration below is a good example of how we give meaning to the things we see what DO YOU see?

15 Advocate Experts: YOU, yes YOU! Many definitions but a good one from Wikipedia: "somebody who obtains results that are vastly superior to those obtained by the majority of the population How many times have you been told your son/daughter can not do something, just to have them do that at home, in their comfort zone? Believe that YOU ARE an expert in how well your child can learn when provided the proper supports!

16 S.M.A.R.T. Advocacy The Who, What, Where, When and Why How do you measure PROGRESS? Challenge but within their abilities. Be willing to push out of the comfort zone! How does the goal fit into the BIG PICTURE? Set DATES -complete or measure progress.

17 Who are our children?

18 GOAL: Get to know my child Specific Tell people about your child: strengths, likes, dislikes etc. Tell people what Down syndrome is and is not! Invite your child who is old enough to help write the letter or create a video! Measureable Invite questions and dialogue about your child and their successes and challenges at school with peers and staff. Achievable Anyone can do this Ask for help-show your work to others if you need to! Realistic Be honest about who your child is and is not! Understand that others may not have the same knowledge of Down syndrome as you do and may come with their own assumptions. Timely At the beginning of the school year and/or any other period of significant change (i.e. change of teacher, new students in the classroom)

19 Example 1: Write a letter! Dear Parents and Caregivers of Casa East, Our names are Jennifer and Jonathan Crowson. Our son, Owen will be starting this year as a first year student in Casa East. Some of you may have met Owen before, but we wanted to write to you on his behalf. Owen has Down syndrome. Many of you may be familiar with Down syndrome, but we hope you don t mind if we share with you some of what we have learned over the past three years about Owen and from Owen. Down syndrome is the most common genetic disorder and one in 800 babies are born with Down syndrome in Canada every year. People with Down syndrome have an extra copy of the 21-st chromosome. This additional genetic material results in common characteristics for people with Down syndrome, including: smaller stature, distinct eyes, lower muscle tone, gross motor and cognitive delays. People with Down syndrome can also experience heart and digestive problems, hearing and visual challenges at higher rates then the general population. But people with Down syndrome can and do lead healthy, happy and successful lives with the right education, support and health care. Now let us tell you a little bit about Owen. Owen is gentle and generous and we love him to bits. Owen has been very healthy and did not require any major surgery as a baby and despite what we were told he is quite tall! He does have tubes in his ears as he had fluid in his ears, which compromised his hearing. He can say many words but does not talk as much as a typical three year old and when someone says something to him or asks him a question he can understand most things, but may need extra time to respond or react. His speech is also not entirely clear (unless he is saying ice cream please which he seems to have mastered) and he finds it helpful when others to listen patiently to what he is trying to say. He can understand simple directions and like other children his age, he is eager to learn and to please others. Owen can walk, but is a little unsteady on stairs and he does not move as fast as his peers and older brothers but he wants to keep up and responds well to encouragement or a lending hand. Owen loves to play with balls and although he can t catch yet he throws a mean pitch!! Your children may ask about Owen and wonder why he is not able to do some things or why he is quiet or why he does not speak clearly. We are happy for you to speak openly with your children about the fact Owen has Down syndrome and this may explain some of their questions and we are also happy to answer any of their or your questions. Below is a link to a short video a friend of ours did for school children which nicely explains Down syndrome in a visual and simple way. We are also going to send in a children s storybook for the classroom that tells a story of having friends with Down syndrome. e Our family is immensely grateful to the DVMS community for embracing Owen and giving him the opportunity to be part of a Montessori journey just like his older brothers Max and Ruaridh and many other friends. We know that he will benefit from being with your children and we hope they will also benefit from getting to know him. Sincerely, Jennifer and Jonathan Crowson. (Owen s mum and dad)

20 Example 2: Create a brochure!

21 GOAL: Increase awareness of Down syndrome at elementary schools to promote acceptance and inclusion Specific Using LEGO we talk to young kids about Down syndrome Measureable 15 minutes presentation no longer as you can loose kids! Visit every class to create impact across the entire school Achievable Yes, one full day at the school. Appreciate that not all schools can accommodate a one-day show. Can do JK to Grade 8! Realistic LEGO allows the kids to SEE something as one explain cells, chromosomes and Down syndrome Timely Progress (to increase acceptance & inclusion) is a long process Measured by the conversations kids are having about the talk at home Provide , phone number encourage parents to give you feedback.

22 Example 3: Let s play with LEGOS! Making sense of cells and chromosomes can be hard. They are just too small! How about using LEGOS to help us!

23 ONE LEGO=ONE CELL! It is easier to think of cells as LEGO bricks they can connect together just as cells do to make a part of your body. In our LEGO example, the STUDS are CHROMOSOMES!

24 Meet Bears Bob & Larry! Hi! I am Bear Larry Hi! I am Bear Bob What do you notice about our models?

25 This extra chromosome makes Bear Bob: A little shorter than Larry Some of his blocks may be different colours BUT he moves and looks just like Larry! Bear Bob s EXTRA stud is an EXTRA chromosome! Even when there are some small differences, you can see that Bob & Larry are MORE ALIKE than they are DIFFERENT!

26 GOAL: Help your child develop LANGUAGE RICH communications skills both at home and at school help him participate more actively in his class activity: Brag & Drag Circle Time. Specific Use social stories with the help of technology or pictures to help your child talk about his or her weekend. Measureable Using PICTELLO to create stories and encourage spoken language. Achievable YES - your child is being exposed to proper sentence structure and spoken language. Realistic The big picture is to engage the child and talk about the stories on his own and to read the stories on his own. Timely With passing time, since the app allows you to archive stories, you can see progress.

27 PICTELLO Visual Social Stories You can create your own stories with your own photos Use the playback option for the device to read to your child Use your OWN recording to hear your child Multiple languages!

28 Alex using Pictello

29 GOAL: Tests and evaluation are always done at school, with people who may only see the child once or twice per year. To help professionals evaluate skills that are not well demonstrated at school, we use video evidence. Specific Use technology to share videos that illustrate child s progress in different areas. Measureable Show progress with videos for a specific skill-in their best environment. Achievable Yes for both parents and child! Realistic The big picture is to demonstrate knowledge and skills that are not well displayed in settings like school with not well known evaluators Timely Videos allow to see progression of skills through time.

30 Our YouTube Channel To demonstrate different skills, we use videos taken at home and we create movies we can share with school & IEP team members. Video editing software (to make format for YouTube uploading): Cyberlink Power Director Windows Movie Maker

31 Our YouTube Channel

32 Questions? THANK YOU for your attention and time. Our presentation slides can be found at Please go and change perceptions, bring awareness, and work hard to promote inclusion of people with Down syndrome in your communities!

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