This letter was originally sent to the members of the FASlink Discussion Forum in January 2010.

Our children have disabilities, but their biggest handicaps are the battles we have to fight to get the services to which they are entitled.

All the services and funding required for our children are controlled by politicians and bureaucrats. Their mandate is to provide as little as possible to anyone and spend no money on things that don't tickle their fancy, or get votes. Every support is hidden or blocked and if you find out about them, there is an immense minefield to cross (no map) to squeeze out the minimum. Our children don't vote and families raising children with severe disabilities have an 85% probability of falling apart, mine included, with the child being raised by a single parent, who will have severe financial challenges. Most poor folks don't vote and are consequently ignored. Lip service is paid to the issues, but only lip service, not money.

For example, the federal government designated $15 million for FASD over 3 years. Not a penny of it got to the grass roots where the real work is being done. All of it was sucked dry by the existing bureaucracy by renaming existing non-FASD programs or creating short term projects that promptly died when the funds ended.

A further example is FASlink. We provide information, support, research and communications about FASD for more than 400,000 people annually. Our website resources provide more than 130,000 FASD related documents, free. FASlink does not receive a penny of government funding. We are politically annoying. Truth can be politically uncomfortable.

You are your child's advocate. You have to become tougher than you ever believed you could be. You must seize the high ground and constantly fight for your child's survival, not just for today, but also for the time when you will be too old, too feeble or too dead to protect them.

In Ontario you need to know about:

• the Infant Parent Program to age 2
• Special Services at Home
• Assistance for Children with Severe Disabilities (ACSD)
• Ontario Disability Support Program (ODSP) (age 18+)
• and for post secondary education, you need to know about online learning programs (college and university) and
  • The Bursary for Students with Disabilities and
  • Canada Student Grant for Services and Equipment for Persons with Permanent Disabilities .
• Download, study and learn the "Accessibility for Ontarians with Disabilities Act". It is a critical ally in your journey.

• Study the articles on the FASlink website at www.faslink.org
• Join a local FASD support group.
• Join FASlink online, particularly the Discussion Forum. Actively participate. This is a huge resource for support, ideas and research. These are the real people who deal with FASD daily, not academicians whose only contact is in an office or through course work. These are the people who navigate the minefields.
• Be prepared to teach about FASD to your family, friends, physicians, teachers and everyone who has influence on your child's future. You have a HUGE education project to do.
• Understand that the most prevalent disease in the human species is MD, Massive Denial. It ranges from the refusal to see the elephant in the livingroom to the brick wall surrounding the support services you will need for your child.

3. Our children learn differently, at their own pace.

They don't fit a cookie cutter system, although I wonder how many children really do. While we may not be able to "cure" prenatal alcohol related disabilities, there are things that seem to help dramatically. The key is to develop coping strategies and work-arounds. I don't have wings to fly but I can drive.

Don't be uptight about scheduled milestones. Our kids don't do abstract. Time is abstract. They will always be late because time has no meaning to them. Live with it. Find work-arounds. They don't like watches. They are uncomfortable. Cell phones have clocks and can schedule alarms. For younger kids who remain close to home, FRS radios are a cheap alternative - an electronic leash.

Convert all abstract concepts to concrete, hands-on learning. Our kids can learn, but they learn differently.

4. Start your child on a computer as soon as s/he can hold the mouse.

For children with ADHD, the computer screen is the size of the world they can handle. They can focus on 18" but not on 360 degrees around them. The game sounds can help block out distractions. Many computer games are both educational and fun. Let them play. Computer games are repetitious, colourful, and much more patient than humans. Your child will develop fine motor skills, strategy, planning and the concepts of success. They will learn to buy, sell, negotiate, co-operate, play in teams (guilds) and compete.

Our kids can have difficulty making and sustaining friends, often because their behaviour can be odd or at a maturity level different from their chronological age. Online gaming (teens+) lets them communicate with people at their own maturity level. Parental supervision and guidance is important to protect them from predators. There are also predators on your neighbourhood streets, so parental guidance and supervision is always wise. Stay involved. No excuses.

Mavis Beacon Teaches Typing is a great keyboarding program and fun to learn. David now types about 80 words per minute, much faster than I can. The constant brain stimulation will help develop neural pathways. Repetition will help make those pathways permanent.

David's fine motor skills were very poor and his handwriting terribly slow and illegible. We bought an AlphaSmart keyboard that he used throughout elementary and high school. The AlphaSMart has a 6 line LCD screen and 8 memory folders. It will run for a month or two on 4 AA batteries. It saves every keystroke continually. Each subject had its own folder. At night, I would download the files onto my computer, print, punch and add them to his binder. This helped me keep up to date and gave him a hard copy of his notes. The downloads were saved to an Asksam free-form database. I would then clear the AlphaSmart folders. The AlphaSmart also has spellcheck which continually improved his spelling. His exams were done on computer. We still use the AlphaSmart to communicate with my deaf sister.

5. Teach your child to read using the computer game instructions and phonetics.

DO NOT LEARN TO READ BY ROTE. Phonetics let the child learn word structure and meaning. Reading game instructions and rules means they get to play the games and succeed. Motivation -> learning. Reading becomes incredibly rewarding. David began on the computer before age 2.

6. Don't use the knee jerk reaction of many parents by seriously limiting access to the computer.

You may control access to some types of games and websites, but they will have access at their friends' homes. Better to teach them about respect for themselves and others and what is appropriate and what is hurting and exploiting others. Teach them not to be victims or victimize anyone else.

7. Let them read what interests them.

Boys love adventure tales, magic, dragons, wizards, "choose-your-own-adventure" books, etc. Books are usually chosen by women using a female brain. Those may work for girls. Boy brains think differently and books that interest girls often have little interest for boys. That is not sexist. It is fact. Live with it.

Even when he was very young, I had trouble getting David to go to sleep. He wanted to read. He would hide under his blanket with a flashlight just to read his books. He can even easily read upside down, a good thing for spies, diplomats and sales. Career direction? Reading has given him worlds of "socialization" when he was not accepted by his peers.

8. NO HOMEWORK

That is a hard and fast rule in my household. Our children are in school 6 hours per day, 5 days per week. They must have a life outside school. If they want to read for interest about something that they are learning in school, that is not a problem, nor is it homework. They need time to play and develop their own interests. Organized sports are vastly over-used and over-rated.

9. Music

Music is logical and mathematical as well as abstract and sensory. It works both sides of the brain. Children are natural musicians. They can sing songs long before they can read music. In fact some of our greatest musicians can't read music. Playing an instrument is simply learning a set of skills through basic instruction and playing. They already know how to feel and create music. Encourage it. Don't kill it. Lessons are very helpful, if they are not rigidly theoretical and if they use the music that has meaning to the child. I am a Director of the International Symphony Orchestra and often take David to concerts. He took music courses in high school (trumpet and flute - his choice) and I taught him to play keyboards, piano, organ and guitar. However, the music he plays is rarely classical but is often show tunes, such as from Phantom of the Opera. He loves music, with the exception of migraine music, nasal country, and punk. His hearing is too sensitive for brainblasters.

Encourage playing (no practice - practice is work, playing is fun) but not on a rigid schedule. Positive flexibility is good.

10. Scouting

Our kids have trouble making and keeping friends, often because their maturity level is younger than their chronological age. Scouting provides group activities where friends are made, adventures are enjoyed and very practical skills are learned in a fun environment. Those skills will last a lifetime. When David joined Cubs and then Scouts, I joined as a Scouter. Scouting had also been part of my youth when I earned the Queen's Scout award with Gold Chord and Bushman's Thong. That only means something to other scouts. Needless to say, Scouting has been a wonderful, positive influence on both David and me. It has also influenced his career direction toward a non-office oriented profession, such as naturalist photographer.

In Ontario we have School Councils that provide advice to the Principal and the Board of Education. The majority of members are parents. They are distinct from School Parent Associations that fundraise. Join the School Council. Be involved in your child's school. My job is to help both my child and the teachers have the best possible experience at school. The teachers know I will do whatever is possible to help make their job easier and I expect them to understand that I know my child better than anyone. I know how he thinks, learns, reacts, succeeds and fails. I know his strengths and weaknesses. Therefore, I can help make life easier by coaching the teacher on how to get the most from my child while both are having fun. Again on the homework issue, no homework. If work has to be done, it must be done at school. David must have a balanced life out of school too. And I occasionally have had to point out that I have a son who LOVES SCHOOL. Don't screw it up. I am very accommodating and helpful, but Psalm 23, sub 4b (above) always lurks in the background. As a result, David's teachers always loved him, were delighted with his enthusiasm and often floored by his questions.

School should be a happy, fun experience. Everyone learns better when they are having fun. Any teacher who doesn't live and breathe that philosophy is in the wrong profession.

David was always the peacemaker and would not tolerate bullying. He is a lover, not a fighter. He was bullied at one school, until he pinned the bully to a tree and thumped him. The bullying ended. He paid attention to all the anti-bullying sessions at school and the students stuck together to prevent bullying.

You become your friends. Good company enhances growth. Bad company is a road to disaster. David has a small core of good friends; three are particularly close. They spend a lot of time at each others' houses. I know the parents. All are good kids with a good, stay-out-of-trouble attitude. They are polite, respectful and ambitious. One, Casey, joined us on the Great FASD Horseback Ride and Trek Across Canada. David does have many online friends and enjoys online gaming. He is also shy until he gets to know someone. He has joined the Celebration Singers, a group at our church (mostly adults) who sing at various events.

13. The opportunity to grow.

Every child is different. But what is consistent is that your child has given you the greatest opportunity you have ever had in your life. You are their best hope for survival and a successful future. You have a very few years (we are all mortal) in which to change your world. You will develop strength you never knew you had. You will never again take anything for granted. You will be pushed to what you think is your limit, and yet you will develop the courage to carry on to even further limits. And you will do it again, and again. You will not only shape your child and yourself, you will also shape everyone who comes into contact with either or both of you. And at the closing curtain, you will be able to look back on a life well lived and a child who has a good shot at succeeding at life. Be grateful to your child.

14. Courage

Love. Be patient. Be forgiving. Be understanding. Cut them lots of slack. There are times for gentle guidance and times for Drill Sergeant restraints. Learn when to use both and have the courage to do so.

Have the courage to stand up against those who would harm your child directly or by denying supports or services. Have the courage to stand up against your child's unreasonable demands. Every child tests the boundaries, continually. That is how they learn and grow. Be prepared to expand the boundaries as they can handle new challenges. History is rarely made by well behaved people. Understand that nobody walks on water, including you. We are all constantly learning on this journey and we will all mess up regularly. Accept it and move on. Never, ever quit.

15. Recognition

You must provide the environment in which your child can grow. They must do the work of growing and be recognized for their successes. They deal with enough negatives in their life. Don't be one of the negatives. Be encouraging and accepting for who they are. Do not be demanding. Being demanding sets them up for failure.

We are as happy as we decide to be. People grow and achieve when they are positive and are encouraged. Teach that for every pile of horse manure they step in, there is a horse for them to ride. When life serves you a lemon, make lemonade.

It worked for us!

Bruce

Bruce Ritchie
2448 Hamilton Road
Bright's Grove, Ontario N0N 1C0
Phone: (519) 869-8026
Website: http://www.acbr.com
E-mail: brightsgrove@yahoo.com