Our son enjoys the lake. Living on the water was a dream for us as a family. We wanted to get away from the pollution and allow our son who has Cerebral Palsy and Autism, to roam freely with­ out the restrictions the city life would have on him. Jordan loves to wander back and forth on our walk­ way and goes around the house and up and down the steps to the slide. The biggest problem was his fear of the water.

When we moved up into the Kawartha area, we knew something was wrong with our baby. The real prob­lems didn’t come out until he was almost a year old. We enlisted the help of doctors and therapists to train him to sit, crawl and walk. It was evident the first time he went to our community beach that there was a problem because of the way he yelled and cried. We didn’t know why he was upset as he was then, and continues to be, non-verbal. Any time we went close to the beach or the lake, he would yell so loudly it would echo across the bay and we were unable to stay and allow Jordan’s sisters to play or swim. Year after year this continued to be his behavior. No one could explain why or give advice to stop this behavior. Then we joined the small group that Five Counties Children’s Center recreation department organized. This was the experimental swim program at the Lindsay pool. Ini­ tially Jordan would yell and scream, we would stay as long as everyone could stand it. Eventually Jordan has over the years, overcome his fear and we are able to join the program for the full session (most days) and better yet, this accomplishment has allowed us to go to the beach, pool or lake without worry of Jordan having a negative reaction.

Without the Cerebral Palsy Swim pro­gram we would still be unable to enjoy normal family activities. We are not the only ones with this experience and most of the children in the program are using it for therapy and swim­ ming. Some have gone on to accom­plish much in swimming lessons and are great swimmers. These programs are a source of help to the families and
comfort to the parents. We appreciate and enthusiastically support this program that is continuing to help us and our son Jordan.

Letter Carrier

Bobcaygeon, ON

Meet our precious son Caleb Phillip Steeves. He is 3 years old and was diagnosed last October with mild Autism. Since birth Caleb has been a very difficult child. He never achieved his milestones on time. We had to attend a variety of therapies that took a lot of patience and understanding. We still need all of his therapies but with everyone on the team we hope and pray that when school starts in 2 years he will be ready. Thanks to CUPW/Special Needs Project. They are part of our team.

Letter Carrier

Moncton, NB

We have a 15 year old son with Asperger’s Syndrome and are having difficulty finding a councilor/ psychologist/therapist to assist him with life/social skills (i.e. appropriate ways to be assertive, socially acceptable ways of communication, etc). Anything we, as parents say, apparently holds no merit in his mind. We live in Maple Ridge, BC. Has anyone else had success in finding such support?

Postal Clerk

Maple Ridge, BC

Dear Special Needs Project,

The fact that my 2 children need extra help in order to maintain control throughout each week at school greatly increases the daily stress in our family. The money from CUPW Special Needs Project to help our children do well is a blessing. Thank you. Because this funding helps with tutoring and child care it means we can save some money in those basic areas. We can now do something fun as a family together and the kids enjoy this. It’s a time for much needed laughter for myself, and my husband, with the kids.

Miscellaneous

London, ON

Forward To The Future

Children and families experience many transitions as they grow together. Some predictable transitions occur: when children move from child care and preschool programs to elementary school, when they approach adolescence and move to high school, and when chil­ dren move from adolescence to adulthood, through high school to further education and beyond to work and independence. Other transitions that our children make include moving into new programs, working with new agencies and care providers and making new friends. Transitions involve changes: adding new expectations, responsibilities, or resources, and letting go of others. 

As a parent of a child with special needs, you may be caught up in day to day survival. You may ask, “How can I think about tomorrow when I’m just trying to make it through today?” But when those moments come when you can catch your breath it may be help­ ful to be aware of those transitions and allow yourself to think forward to the future.

What follows are transition timelines with suggestions that will encourage your child’s independence. Plan­ning and preparing for transition begins today! We hope this timeline will give you ideas to help your child achieve independence as s/he grows

Transition Timeline

Age 0-2

• Begin Financial Planning

Set aside money to assist your child when he or she makes the transition to adult living. Have a will written and revise it as necessary.

• Encourage Language and Communication

Assist your child in learning some means of commu­ nication - the more vocabulary that is understood and expressed the better.

Age 3-5

• Involve Your Child in Social Activities

Enroll your child in preschool, cooperative play groups, and/or a child care centre so that the child gets experience socializing with others.

Age 5-6

• Seek Inclusion

Consider very carefully what type of schooling your child will receive. Make sure that he or she is included as much as possible in the typical school program. Regular kindergarten in your neighborhood school should be the first option to explore.

Age 6-11

• Expect Your Child to Participate

Have your child do regular chores as part of the fami­ly’s activities. Involve your child in neighborhood and community activities, including such things as swim­ ming lessons, soccer, dance, martial arts classes and so forth. Invite children to your home and make it a pleas­ ant place for all types of children to visit.

• Teach Your Child Life Skills

Assist your child in learning money management and shopping skills. Help your child spend some or all of their allowance. Make your child responsible for good grooming and selection of clothing to wear. Teach your child to make simple meals and wash clothes. Assign regular chores that match and stretch your child’s abilities.

• Begin Sex Education

As your child grows and matures, help him or her to understand human reproduction and sexual develop­ ment as a normal part of growing up.

• Make Your Child Aware of Safety Issues

Some children with disabilities are vulnerable to exploitation because they do not have the ability to sense danger or predict consequences. It is important to teach your child how to protect himself or herself from harm. Begin early to teach your child how to avoid dangerous situations, what to do in emergencies, and who to call on for help.

• Teach Your Child About His/Her Disability

As soon as your child is ready, provide information about his/her disability. Encourage your child to “take ownership” of the disability and begin to advocate for himself or herself. Include your child in the IEP process as early as possible.

Age 12-14

• Functional Skills Vs. Academic Skills

As your child enters middle school, give some thought to how much time in school should be spent on aca­ demic skills and how much on functional life skills. Some children will need to have emphasis in their schooling shift to functional skills that prepare them for the adult world.

• Encourage Your Child to Work

Have your child do volunteer or paid work in the home, neighborhood or community. Assist your child in developing good work habits.

Age 14-18

• Teach Your Child to Use Public Transportation

If your community has public transportation, teach your child to use it. Encourage your child to get to places in the community on his/her own.

• Consider the Type of High School Program Your Child Will Pursue

Consider carefully your child’s options for high school education. Decide at the outset what type of diploma your child will earn and when he or she is likely to graduate (e.g., at 18 or late). Encourage community based job training and life skills if these are appropriate activities for your child. Involve your child in all decision-making.

• Begin Formal Transition Planning at School

Be sure that your child has a Transition IEP that addresses academics, vocation and living skills: what­ ever your child needs to make a successful transition. Begin to involve adult service agencies if your child will need these kinds of supports either short or long term. Make sure your child’s name is on waitlists for services.

Age 18 -21

• Encourage Steps Toward Independence

As appropriate, encourage gradual moves toward greater personal independence and self-care. Encour­ age your child to find a job in the community or to pursue postsecondary education or training. Support your child in establishing an appropriate living arrangement and becoming involved in volunteer and leisure activities in the community. Take on the role of coach on the sidelines and let your child become the decision maker.

• Apply for Adult Services

As appropriate, apply for the income and/or employ­ ment support programs offered in your jurisdiction. Seek other families and support agencies who can help navigate the application processes. Complete the trans­ fer of medical care to an adult provider. If appropriate, contact the Office of the Public Guardian and Trustee to begin guardianship process before your child turns 18.

• Continue Community Learning and Involvement

Attend resource fairs, visit employment providers and post-secondary institutions in your community. Contact the local Community Living Association, Independent Living Centre, support groups and other organizations for resources in the areas of family support, educa­ tion, employment, rights, participation, advocacy and self-planning. Other adults with disabilities and their families can also be a great resource. Encourage young adult to participate in support groups and/or organiza­ tions related to his/her disability.

Adapted from the work of the Adolescent Health Transition Project sponsored by the Children with Special Health Care Needs Program, Washington State Department of Health and the Clinical Training Unit, University of Washington., includ­ing “Working Together for Successful Transition”, the Wash­ington State Adolescent Transition Resource Notebook.

Transition Stories

Do you have experience with a “transition story”? Here’s a chance for you to share your stories of how your son or daughter has successfully transitioned from child care to school, or is transitioning from the adoles­ cent world to adult life including health, postsecondary education, work and independence.

Please share these stories with other members through this newsletter - they just may help to spark ideas for more successful transitions! If you need help please call the Special Needs Project and Moving On Project office - 1 800 840-5465.

Resources

Autism

http://www.autism.net/ - Geneva Centre for Autism pro­ vides information and support to enhance the lives of people with autism/P.D.D.

Learning Disabilities

“Teen learning disabilities: help your teen overcome his learning obstacles” by Christine Langlois, Canadian Living Online

Post-Secondary Information

http://www.neads.ca/ - The National Educational Asso­ ciation of Disabled Students is a consumer organiza­ tion, with a mandate to encourage the self-empower­ ment of post-secondary students with disabilities Web­ site has an extensive on-line resource centre.

Equipment

http://www.tetrasociety.org/ - Tetra Society is dedicated to assisting people with disabilities achieve an inde­ pendent and fulfilling life in the community by creating assistive devices

Transition

http://depts.washington.edu/healthtr/index.html - Ado­ lescent Health Transition Project: a resource for adoles­ cents with special health care needs, chronic illnesses, physical or developmental disabilities.

General Resources

http://www.enablelink.org/index.html - EnableLink: “ linking people with disabilities to a world of resources”.

Sibshops

There is a listing of “registered Sibshops” across the country that provide opportunities for brothers and sis­ ters of children with special needs to meet their peers and discuss their joys and concerns in an atmosphere that emphasizes play, discussion, wellness and camara­derie. To find the list go to: http://www.thearc.org/sib­lingsupport/sibshops-directory and click on the link for Canada. Contact information for all available Sibshops will be listed there.

To parents of Autistic children who are nonverbal: It is very difficult to explain your child’s diagnosis to him/her. On our son’s 16th birthday we created a note explaining his situation titled “Who am I?” and read it to him. He agreed to give this to all his teachers during his care conference in school. We would like to share this with all the parents who have a non-verbal child.

Mr. And Mrs. Jose Carlos R. Paua, Jr.

Who Am I?

My name is Carlos Angelo Paua and I am Autistic. Most of you have come to know me since last year and maybe each one of you has
a tale or two to tell today. I was born with a brain disorder called Autism that makes me different and special from the rest of the gen­ eral population. Because of this brain disorder, I have difficulty living in your world. Allow me to tell you about myself through my parents who have known me for 16 years.

I find it hard to understand why people behave the way they do. Relating to others is like going to an unknown territory. Because of this difficulty I prefer to be alone. When there are a lot of people doing many things I get restless, anxious and nervous. This sensory

overload shuts down my body in the form of a meltdown. This is not an over reaction to stimuli but this is my body attempting to tune out. During this episode, I may hear words from people around me but they are all jum­ bled. Often times, you will see the warning signs of impending overload or hypersensitivity. This is when I cover my ears, hum or make guttural sounds.

My behaviour is labeled inappropriate, disruptive and a nuisance to others. I urge you to be sensitive to my dis­ ability. Leave me alone and soon I will calm down. I may not look you straight in the eye but I can see you well from the corners of my eyes. I need help to respond and connect with other people by way of picture symbols and printed words. I cannot initiate an activity without visual aid or prompting. In order to participate in an activ­ ity it is important that the steps involved be described to me in order of occurrence.

I have to be told in advance what is to happen next by way of a social story.
My intelligence is called visual-spatial intelligence. I am good with puzzles, word mazes and constructing something with a plan.

The most important feature of my disability is difficulty in communicating with other people. I cannot express myself in words or gestures. I hear spoken words but I cannot express the way I understand these words. That connection in my brain is missing.

Lastly, I am not flexible to change. I stick to my routine whether it is self-care, nutrition or other activities of daily life. It is hard for me to choose but slowly, with your help, I can now make some choices. These choices do not always conform to our world.

I am forever grateful to everyone who has touched my life and helped me to live in our world and enjoy living in it.

Permanent Full Time

Mississauga, ON

Advisor Profile

Each issue of the newsletter will now bring you a profile of an advisor. Advisors are key to both the Special Needs and Moving On Projects. Through telephone contacts advisors provide members with support and resources as well as collect information about issues that impact work and family life, such as health benefits. Advisors do this part time cyclical work in addition to other employment, raising families, attending school and volunteering. We hope you enjoy the Advisor Profile!

This issue our featured advisor is Roberta M., a Special Needs Project Advisor in Ontario.

Roberta has been an Advisor for the Special Needs Project since June 1998. Roberta worked as a day care consultant when she heard about the Project and the need for Advisors in Ontario. After she contacted the Special Needs Project office, Roberta went through an interview and screening process. Soon she became the ‘Advisor’ to eight member families from Ontario, Manitoba and Quebec. Seven years later Roberta continues with the Project, providing support and resources to eighteen families!

For Roberta, the best part of being an Advisor is the ongoing contact with families. Roberta enjoys the chance to get to know the families and to hear about their child’s progress and change. She is delighted when families let her know that a contact she suggested worked out for them!

As an Advisor to families in different parts of Ontario, Roberta learned how varied services are in urban and rural parts of the province. In smaller communities, families may be more isolated and

have greater distances to travel for services. Working with members in three provinces, Roberta expanded her knowledge of programs in different parts of the country. The Project “widens the horizons” of Roberta’s perspective of Canada.

These days, Roberta works full-time as a Program Coordinator for a family home visiting program. This program assists families who have children with special needs. Outside of her busy job, she works on planning for her passion in life: travel. Roberta’s passport includes stamps from Hong Kong, Morocco, Thailand and Israel. She also enjoys reading, especially Canadian authors. Roberta enjoys her work with the Special Needs Project, and appreciates its uniqueness and the support it offers to members. To all the members she phones, Roberta extends her appreciation for their patience and flexibility in arranging those telephone interviews. Roberta also thanks Gail and Dorothy for all of their resourcefulness, hard work and support!

Colin has adjusted well into the middle school and has started Grade 7. There is a resource room for the special needs students to work in. I can’t help but think of one of Colin’s friends in particular as I write this story. Catrionna was immature for her age and this made her a victim for bullying from kindergarten to Grade 5. Her mother would cry at the IEP meet­ings because of the cruelty her daughter had to endure. It always hurt to know that Colin was being left alone by his homeroom classmates. Colin was moved to Catrionna’s school because his shut down. Finally, Colin would come home and say that he liked school. Grade 6 was positive for both Colin and Catrionna. We are advocates for our children, but we need help with that role. Special needs children have consti­tutional rights and awareness of those rights should be part of the teaching curriculum from preschool onward.

PO4

Kelowna, BC

I have never experienced shame and disappoint­ment about my life until my last child was born. Despite all the neces­sary medical precautions and surgery to ensure we would have no more children, another son was born and he too has sickle cell disease. We now have 4 children, 3 of whom have sickle cell disease.

I never wanted to men­tion this to the Special Needs project. My advi­sor Roberta, who has become part of my family, helped me to be able to communicate this. Now I am ready to enroll my youngest son.

Thank you,

Mail Delivery

Brampton, ON