- Run!
Go find people who have children with FASDs so you have a support group. Realize that life as you knew it before the diagnosis has just improved. You can now change. Look for books you can read in small intervals because sitting down to read may be impossible.
- Love!
Love with these children is a verb – it is a super hero action word complete with a cape and S (Super Caregiver) on your chest. You will not be any ordinary mini-van mom. You will be parenting in the trenches thinking about the next strategy to help your child through the day, hour, minute and sometimes second. You may live with a temporary broken toilet because blocks, little cars and washcloths go down the drain the same day the washer and dryer break. She laughs while she cries as the plumber hands her $300 bill and quickly bans all toys but one yellow rubber duck from entering the bathroom.
- Love means reminding, but not judging the little things.
- Love is making the pot of coffee for your spouse while she is working with a child.
- Love means saying “I love you” over and over and over again to members of your family and yourself. .
- It means healthy touch and hugs and kisses. .
- Love means not expecting the child to love you back the way you love the child.
- Willfulness!
Will yourself to change your mindset. You are still raising children, but realize that everything is “more than normal.”
- When your child won’t do something, step back and think, maybe they can’t because of neuro differences. Look for tiny steps to allow them opportunity to achieve. See Diane Malbin (won’t versus than can’t)
- Everything is concrete, simpler than you usually perceive and understood by the child in black and white, yes or no. Anything in the grey area middle like perhaps, maybe, sometime and mostly is very confusing to the child.
- Repeat! - You will learn to repeat, repeat, and repeat to help your child learn. Find new ways to communicate with your child. You don’t just demonstrate you get in there with them and do it over and over.
- Expect Rages – Frustration, confusion and fear of the unknown can lead to anger, even rage. The child with FASDs has a limited range of emotional responses which are often sad, mad, glad, happy and angry. They have less coping abilities and it boils over. Anger is an available friend that can be called upon when the child is feeling weak, powerless or sad. Anger feels strong and familiar and it can act as an emotional anesthesia. Your job is to help your child get beyond that escalation.
- Prepare, prompt and redirect - Prompt simply to get desired behaviors. Develop cues, words, lists or cards to help child remember.
- Redirect – pulling the child quickly out of the situations and changing the environment.
- Ask other mentors with children with FASD’s to find ideas to help you help your child.
- Strength
Realize you are never in control again, but our children expect us to be in control and they loose it when we are not in control. They rely on us for structure. When they fall out of control is when we are not at our best and there are chinks in our armor. We become the brain coaches for our children and the barometer for their behavior.
- Pray for sleep and wisdom. You will need to develop your patience and the only time you have an opportunity to “really” practice patience is when you are just about to loose it. So enjoy the opportunity. Maintain your own health. Eat, sleep and exercise for you! Find your spiritual place in the world and hold on tight. Even if you don’t believe in Jesus you may need Him for this job. At least understand you will need something more than yourself.
- They cannot connect “Why” they do what they do. In fact using the word “Why” triggers blame and fear, shutting down their ability to think. Instead, ask “who, where, when, what and how.” These go for objective fact, not judgment. It may work better to ask ‘How come’ or ‘what happened.’
- An ultimate NO draws a line in the sand, inviting a power struggle. It provides the child with no options and places the child in a chasm of emptiness. Instead try redirecting by offering compromise with two choices ‘you’ like.
- Say what you mean and mean what you say. Use simple, short, clear language such as:
- “Walk” instead of “Don’t run” tells the child what you want. It forces the child to determine what you want and provides dangerous unforeseen options.
- ”Use your spoon” instead of “Use your manners” Use you manners offers too many unknowns – you may need to say, “lift your spoon”, “put the food on your spoon”, “put your lips around the spoon”, “put the spoon in your mouth”, “take the food off your spoon”, “chew the food, and swallow your food”. Just to get them to eat)
- Simplify!
Keep trying to find ways to make your life and your child’s life easier. Recreate your dreams – forget the white picket fence and no weeds in your garden with the perfect child. There are no perfect children, the house is always in a disaster mode somewhere, and weeds suddenly appear beautiful, mixing wonderfully with the perennials that need little care. Expect the children and the critters will tear up your newest creativity or organization sometime soon. You can focus on the clean corner or drawer or shelf but not the whole house.
- Prepare for public behavior and have an escape plan.
- It’s ok to NOT organize like normal people do…It’s ok to buy five packages of stretchable magic mittens in all the same color and size for a single child so they will always have a pair that works. It’s OK to do the same with socks. It’s OK to wear clothes to bed if morning dressing is too complicated and creates a disaster. It’s OK to run already dried towels in the dryer to be warmed for the child after the bath.
- Rules are rules and need to be clearly stated and not changed.
Be Kind. Be Respectful, Be Safe.
School Rules - Indoor voice means no shouting or loud language.
Hugging is better than hitting.
- Fly Lady is there for you! Everyday she provides little ideas to help you feel like you are getting ahead; do not turn around because you will see it is being changed into chaos behind you.
- Truthfulness!
Children with FASDs live in the present moment and may not even remember what happened five minutes before. Ideas that come rapidly to the brain may be lost in transmission to the hand or mouth.
- Every action we learn as we grow is a script (written record in the brain) and the child with FASDs may not be able to retrieve the information you are asking them to get. The scripting can become mixed up, backwards or gone. Because they don’t have the answer, they make up what makes sense to them at the moment to please their caregiver/leader or not get into trouble. This is called confabulation and many families and professionals have fallen because whatever the child thinks becomes their reality.
- Our children learn to mimic normal and may look and appear that they are getting along fine. When they are in a new or unusual environment they do not have the tools to keep it together in the same way they can in a familiar setting. It is common for a child to agree, shake the head nodding yes or use body language that appears they understand what you are saying.
- Think younger developmental stages and finds ways to have fun to look like you are 16 while you develop a 7 year old skill.
- Safe Problem Solving – Allow a safe place for your child to bring forward the truth of a transgression when they remember it or are able to hold themselves accountable. Celebrate the Moment! (Develop a place for confession, problem solving, solution and only celebration – not punishment – it is a place to build self-discipline).
- Our children remember the visual and remember in the visual sequence, and that is why they remember what happens to someone or somewhere else, but they don’t see themselves or remember what they did. They rely on visual memory cues to move it to long term memory and they cannot see themselves. You may need to guide them to coordinate realities and connect the dots.
- Provide a rewind button. Because the child only lives in the present, the story/idea provided by the child will be provided within the framework of time you are presently in. So when you ask how they are doing at school when they are at home, they may not be able to give you an answer. You will need to quiz them with who, what, how, where, and when questions. You must discover triggers into their memory. If you suspect the child is making something up and it is frustrating you, offer the rewind button to allow the child to shift gears. If they are not telling the truth the story changes over time.
- Discuss or draw out. Drawing allows the child to work out the issue themselves and explain it to you.
- What you did.
- What happened because of it
- What should you do next time?
- Language is important and must be understood and clear – very often a word is misunderstood and the child acts upon what he or she believes you wanted.
- Keep it simple for clear understanding. - Most of us talk at our children – Our children may be only hearing every third or seventh word. Your child may not be able to hear all the pieces of the sentences so things can easily be misinterpreted. The more information you give the more they lose. They will remember the last thing you said. Have them repeat the instruction.
- Be short, visual, and concrete in your language - The word ‘skills’ is abstract but the word ‘tools’ is concrete – reading is a tool, cleaning is a tool. We need life tools to become successful. Note that success for you may not equate success for your child
- Teach!
You can not rely on the education system only to teach only your child. You have to teach the teachers and advocate for your children.
- Teach about the reality of FASDs in a kind and truthful way. Help the child understand their abilities and what areas they have to work a little harder on or differently to learn to do certain things.
- Realize your child may not generalize learning. The total learning experience makes up their knowledge base, this includes: area, smell, temperature, touch, teacher, sounds, modality. The child will need to be taught the same skills in many locations to generalize their learning. This is why a child may be able to know all their spelling words at the dining room table and not retain any of them on the school test. Helping children and their teachers understand this can reduce stress and improve their learning.
- Find homebased brain building and neuro settling skills –
- Potato Leek Soup contributions - Peeling potatoes contributes to the family dinner. Plus hand-eye coordination, pressure on the hands is the same thing as squishing a stress ball, chewing gum or jumping on trampoline. It is very safe. next to mom, and focused with loving family connection. It contributes to the good of the child and the family.
- Digging in the garden – heavy pressure, pulling, carrying. This becomes the same as having a trapeze session inside.
- Find FASD specific curriculums to share with others
- Advocate!
You and your child are not an island. Life is so much more complicated than that and it will take a “Circle of Friends in Support Areas” to make it all happen.
- Use person first language – You’re child is a child first and happens to have FASDs just as a child could have other issues. Visit Disability is Natural to learn more from Kathie Snow.
- Passion!
Ask for wisdom and try a million tiny things to find that spark in your child to develop a passion. It may be rocks, it may be horses. Whatever it is that they obsess over you have now discovered the point of teaching strategies. Utilize everything you can as a teachable moment within their passion.
- Enjoy!
Model enjoyment of life –Help them do normal kid things.
- Laughter is healing. Model laughing at your own mistakes.
- Have a project for yourself so you do not loose your sense of self in who you are in the midst of child rearing.
- Connect with nature, arts, and craft. Watch birds soar. Walk in the woods. Play with doggies. Frequent local parks to wear off energy.
- Give back to the community – our children will not learn empathy unless we model it.
- Join the Backpack for Kids Project, Blankies for Babies Project or a Backyard Penny Carnival for FASD to help our kids make a difference in the life of another child.
- Celebrate!
The little gifts the child has and the achievements you and your child create. Create celebration days – Ice cream cakes for breakfast. Make cards for people in nursing homes and deliver them. Pet puppies and kittens at the Human Society. Dinosaur pancake breakfasts. Picnics with races in the park. Eagle watching on the bluffs. Agate or fossil hunting. Bug collecting. Wildflower picking. Backyard Olympics or Obstacle Courses. Big Breakfast Fry (bacon, eggs, sausages).
Most importantly realize this is a building project – a brain building project and like any building project it takes more time, costs more money and is more messy than you every imagined.
THANK YOU! I always believe a bunch of friends are better than one when dealing with ideas on how to cope with FASD and complicated children. Special thank you to my friends: Veronika McHugh, (www.fasd.ie) FASIreland, Vicky Ness (mom to 9 children with FASDs), Ann Yurcek (mom to 5 children with FASDs - www.tinytitan.org), Sue Terwey, (www.mofas.org), Lauren Runnion-Bareford (mom to 6 children with FASDs) and Sandra Stanton (www.ourbrainbuddies.com
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