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Re “ally” 10 FAScinating Steps

To Help An Alphabet Soup Child

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by Jodee Kulp

Children who have a diagnosis of FASD and the numerous other alphabet soup labels CAN be successful. When you read the statistics of outcomes of kids with this diagnosis, it can be overwhelming. It is not always a positive portrayal. But, we are now armed with more information and strategies for these children than we had before, and an FASD diagnosis does not have to be a prison sentence or a life of social failure. A diagnosis of FASD equates to permanent brain damage. The diagnosis cannot be changed, but there are strategies can help a person's brain compensate for the damage.

Try embracing the prefix “re” = meaning again, or anew (once more again in a new matter or form).

“RE”INVENT -- Change Your Relationships

Raising a child with a soup can of labels is not easy. It is isolating and exhausting. Other healthy adult relationships are necessary to help you be your best so your child can reach his/her potential.

  • Unite with others. Your close relationships are vital. Rely on others for small and big things. Find families you can use for respite – even an hour break can help.
  • Discover you are not alone. Reach out past your family. Go to a seminar, conference or workshop. Meet new friends who have experience with your type of child on line.
  • Limit negative relationship. You will need all the positive energy you can get. Surround yourself with people who have good attitudes and a sense of humor.
  • Make a list of 50 fun things you enjoy and put it where you can find it. The back of your cupboard or in your underwear drawer are two prime places. Choose activities you will do with others or by yourself.
  • Make time for your spouse, significant other or special friend.
  • Give one minute gifts of love making– a smile, a wink, a soft touch, a cup of coffee. Realize that when you smile, make a meal, take out the trash, bring home the paycheck those are all ways we make love to each other. Have fun making love all day long; nourish your heart.

“Re”generate ­-- Change Yourself

Living with a child of many labels is not easy. You may feel helpless. Strong structure and routines help them feel safe and provide predictability. It is easy for a needy special child to suck you emotionally dry, you will need stronger structure and routines with yourself to remain healthy.

  • Take care of you Take ‘Time Out’ for yourself even if it doesn’t work for your child. It’s OK to tell them. “All my energy is used up! Everyone to bed! I am sending myself to bed. That means you have to go to bed FIRST!” Breathe. Take a few seconds to take a deep breath and clear your head. Tighten all your muscles and relax each slowly. Then take a final deep breath.
  • Take the gift of time – Fill up car with gas and clean the trash off the floor!
  • Take a one-minute vacation. Savor each minute!
    • Favorite tea or coffee (green tea with Jasmine or flavored creamers),
    • Magazine (very short articles),
    • Daily prayer book (short devotions)
    • Shower (nice smelling shampoo or bath soap),
    • Fragrance (perfume or oil in purse, drawer, pocket),
    • Food (comfort food within reason),

“Re”focus ­-- Change What You See

Reintroduce yourself to your child. What we say and our child hears, understands and interprets may be very different from our intention. It took 16 years for our daughter to voice her understanding of "I don't care if you....". To my husband and I it meant "We trust you to make your own choice” Every time we said it she thought we “did not care ABOUT her.” We should have said, "I trust you to choose. What do you think?" or simply "you choose." This would have given her security and empowered her to work through issues, instead of falling apart and feeling abandoned.

  • Face the facts, your child has brain damage and you cannot change the piece of the brain that is malformed, missing or misplaced.
  • Let yourself cry. Give yourself permission and time to grieve for your dream for your child. Feeling pain and loss will allow you to refocus so you can help your child become the best he or she can be.
  • Dry your eyes. Realize you have a very alive child (perhaps very much in your face) who is living and breathing and doing just what he or she thinks is appropriate, regardless of what you expect or want him/her to do.
  • Go on a treasure hunt. Sit down with significant others (spouse, friend, siblings, relatives, case manager) and write everything "special" about your child. List the "positives". This will become your focus. Post them on the refrigerator and share them with people important to you and your child.

“Re”APPRAISE­ -- Change the way you think

You would not understand color if you were born blind. You would not understand the rustle of leaves, if you had never heard sound. Your child was born with central nervous system differences. Discover the missing bricks in your child’s development. You will find them when you least expect them. It is easy to explode and my child shuts down or explodes along with me. Neither is productive. The life path with these children is filled with detours. If we try to stay on the road others travel, we will end up in the ditch. If we focus on our child’s negative behaviors we can spend days, weeks and months not being very productive.

Your child does not know the difference. You have a frame of reference of your belief for ‘normal’. Your child’s only frame of reference is what they have experienced. Let's look at an example:

  • A toddler refuses to eat, spits and screams every time you try to feed them. Meals are a battleground. He is not gaining weight. Surprisingly, on a trip to the dentist it is discovered that the child has no enamel on their teeth and eating causes pain. Tooth capping eliminated the problem.
  • A child spits, sprays and eats with their mouth open. You are thinking of wearing a raincoat to dinner. You discover your child is a mouth breather and believes that if she closes her mouth she will die. A trip to the doctor determines nose breathing is possible. By training in nose breathing you eliminate the spitting and spraying.
  • A child spills food at every meal.
    • Your child cannot sit still. You learn sitting still is the highest level of balance and your child cannot even balance on one foot, hop, skip, or do jumping jacks. Your child can be sequentially taught to do these skills. Utilize a "move and sit" cushion to help with the fidgeting.
    • Your child knocks things over when reaching. Your child’s eye-hand coordination may be immature or they may not be able to cross their horizontal midline (put their left hand on their right knee and their right hand on their left knee. A cactus garden down the middle of a table provides a remarkable incentive to pass food carefully. Exercises increase range of motion. Vision therapy increases visual skills. Auditory therapy helps balance.
  • Your child fills in gaps of conflict with "I don't know" because " I don't know" is easier for us to accept than taking the time to understand a ten second child in a one second world.
  • The child who runs the dishwasher while dad fixes the plumbing below because the "Dishes have to be done before you go to bed"
  • The child who can spell a word, but not read it or read it and not spell it because those two areas of the brain don’t seem to connect. .
  • Don’t assume you know what they are thinking. In each of the cases above the child was trying to be obedient and not manipulative..

“RE” STORE -- Get help for your child.

Use every opportunity to help your child become the best he or she can be. For some children, medication is am important component. Children with brain issues need proper nutrition, water, oxygen, exercise and sleep every day. If your child was an Olympic athlete, you would provide these in quantity. Think of your child being an Olympic Brain Athlete each day, working to maintain connection with the rest of the fast moving world. Consult professionals to learn what you can do to help your child. Check out your child’s nutrition processing, visual processing and auditory processing.

“Re”MODEL­ -- Change Your Behavior

Use your energy to pay attention to what you enjoy about your child. Stand on your head when they do something RIGHT!!! Say something right! or when they are just trying hard to maintain. Build on that foundation.

  • Tell your friends the GOOD STUFF!
  • Catch them being good. Better yet, set them up to be good.
  • Catch them being good again.
  • Realize that change is hard. Keep life simple. A video game or a song listened to repeatedly provides security. The program or music never changes. Our lives, our schedules, our kitchen counters, even dinners are never the same. Repeatable music and videos are comforting.

These kids learn from experience. The more GOOD experiences they have the more good things they are filled up with. Try "gluing" a child to you for a day, instead of isolating her in time out. It is more work short term, but the long term pay off is better. We make the day fun. She has to go where I go and do what I do...laundry, cleaning, dishes whatever.

“Re”arrange -- Change the Environment

Environmental controls make a big difference. What controls do you use?

  • Wind chimes that hang by their bedroom door so you know when they depart.
  • A big doggie who follows your child around and barks when a stranger comes near.
  • Fluorescent lights in my office above my desk to keep her out and full spectrum lighting in the study area to keep her in.
  • Harp tape in my car when I am SICK of teen music.
  • Ear plugs or iPod to drown out noise.

Hang in there. Hang by your toes if you have too. I have pulled my hair out by the roots tripped over a few fallen bricks. It is better to take a deep breath and close my eyes...

“RE”CUSE -- Change the conflict

Disqualify yourself from participation in a conflict on the grounds of prejudice or personal involvement. Think out of the box. Challenge yourself to find ways to let the conflict remain something the child handles with your support as a teacher, not as the judge.

  • Consider a " consequence bag". Have the child help you write consequences on papers to put in the bag -- bring three piles of clothes upstairs, fill the dog dish, 2 minutes of strong sitting, empty the cat litter box, take out all the trash in the whole house, 10 jumping jacks, 10 leg hops. You can offer one nice consequence like a dish of ice cream and ask them what their worst consequence would be. Write it on a paper and determine if you keep it in. It’s ok to pull it out so long as the child doesn’t know. Let the child pull out their own consequence. You can now be the supportive adult and cheerleader for them to complete it, instead of the judge. “Oh bummer, you got the cat liter, I’ll have some hot chocolate ready when you finish. At least you didn’t get ……
  • Change the conflict opportunity. I gave up on refrigerator raiding.... besides what kid doesn't like to eat a pizza frozen and raw.. We quit buying fun food. Everything in our refrigerator and storage became healthy. Oh well.

“RE”SUME -- Get Past

See beyond the appearance of an issues and get to the truth. Then go to bat (advocate) for your child. Sometimes I wonder why I think I can accomplish big things with young people who have good hearts, but complicated minds and unexpected reactions. Yet we have learned to get past our difficulties and resume our lives and goals and in the end we conquest.

  • Expect complications. Change is difficult – Life is in constant motion. A change for me is exciting and a new opportunity to learn. For my daughter, change is like standing on the edge of a bridgeless chasm. She has to freefall, hoping some glimmer of reality will catch her. Meanwhile I have had to grow up. I had to learn to let her fall, sometimes fall with her and other times catch her at the bottom.
  • Get past embarrassment and let the world experience your child. Let your child experience the world. Each experience will provide a larger foundation to grow on. Forgive your child when actions are outrageous and statements bizarre.
  • Get past hurtful words the child says when confused, frustrated or angry?
  • Get past hurtful words from others who don't understand your child. The adults who yell or call us bad parents, without understanding what we are doing or how our child is coping. Forgive those who don't understand. Allow learning experiences for all.
  • Get past thinking what works for other children will work for your child. Discipline for a normal child progresses from parental control into self-discipline, independence and finally interdependence. Your child may never reach these higher levels and may always need an external brain to help them succeed and remain safe.

“RE”CREATE -- Be sensible

Does your child fall apart in the same area of the store each time? There may be a reason? For some it may be the lighting and colorful packaging at the grocery store, combined with the hum of the lights, the intercom, movement of shopping cart passing the boxes, perfume of the lady or smoking smell from the person in line, combined smells of different foods.

  • Play detective. Your child may be under sensory assault (in pain, fearful or confused) and will react to protect his/herself. Find the facts. Use your own senses to interpret life through your child’s compromised senses, interpretations and reaction to life experiences. Take this week to ask your child “what bugs you?”
  • Consult a licensed Occupational Therapist for a sensory evaluation.

Here is a chart of some things that can set a sensory child off