Re "ally" 10 FAScinating Steps To Help An Alphabet Soup Child

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By Jodee Kulpl

We learned to In spite of fetal alcohol and it's soup can of labels our family has learned to succeed. Our daughter's brain damage is permanent. The diagnosis cannot be changed. We have discovered however, hope and strategies to help her fulfill her life dreams

Five years ago, our daughter (ADHD, SI, FAE, CAPD etc. ) could not rhyme cat and hat or understand Seuss. She is now the main lyricist, rapper and leader of her group www.moangels.com.
Seven years ago she raged and bit and growled. Today she works hard to discuss an issue and maintain her personal integrity.

The road to help our daughter has been long and winding. It will continue throughout her lifespan. My husband and I struggled and fell as our daughter learned to spread her wings letting her abilities and spirit soar. We embraced the prefix "re" = again, anew (once more again in a new matter or form). We began by reinventing our family. We became her re "ally".

"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.
  - Make love all day 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. Usually I trip over them, stub my heart, and land splat on my face with emotional screeching. 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. Weight gain is nil. Lo and behold on a trip to the dentist discovers 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.
    - 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 10 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" A wet dad found the hairpiece lodged in the pipe past the elbow of the sink!
    - 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.
    - The child who buys an R rated movie because you told them they couldn't rent it.
  - 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 it is proper medication. 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 skilled in working with children with brain issues things 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.
- 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. I've glued Liz to me for the 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 If things make you crazy think out of the box.

"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. So they know when they depart.
- 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
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?"
- Toni at www.kidscanlearn.net has some articles to help you understand sensing issues our children face.

Lighting

Fluorescent lights
Halogen lights
Strobe lights
Car lights at night / in rain
Tiled tunnels
Lighted mirrors
Reflective materials
Flickering sunlight through leaves / off water / blinds
Snow
Severe contrast
- Red/black
- Blue/orange
- Black/white
Cinema/plays
White paper glossy
LCD signage

Smells

Very sweet smells
Unexpected body odors burping, vomit, gas passing
Paints, varnish, glue
Hair spray, gel
Dry cleaned clothes
Fabric softener
Fatty foods deep-fried
Orange, banana peels
Cologne, perfume, aftershave
Smell of plastic
Gasoline, oil
Clinics, hospitals, antiseptics
Animal or human defecation
Medicine or alcohol

Sounds

High pitched sounds
Deep resonating sounds
Background conversation
Discord
Unexpected loud sounds
Instrumental music mixes
Intercoms
Fluorescent lights

Touch

Rough or cheap paper
Telephone book
Newsprint
Manila Paper
Color Crayon Paper
People touching them by accident
Teeth cleaned or brushed

Clothing on self

Stiff tags
Stiff fabrics (jeans)
Seams in socks
Seams in clothes
Jean seams
Appliqué on clothes
Waistbands/ wristbands
Belts
Ties under chin
Jewelry
Synthetic fibers
Pant legs that rub against each other
Stripes or polka dots
Material that does not breath
Too hot / cold
New shoes
Wool

Body in Space

Swivel chairs
Being seated when others are moving
Tipped chair or surface
Light contact with ground or seat
Open area behind child's back
Close quarters
Lines of people
Tents
Elevators

Hair

Hair bands
Hair brushed or combed
Hair shampooed
Barrettes

On others

Noise makers
Jangle bracelets
Watch alarms
Cell phone ring
Fabric rubbing
Reflection
Metallic look
Shiny sequins
Watches
Jewelry
Intricate patterns
Stripes
Polka dots
Loud colors

Other issues

Sweat on body
Rain
Wind
Temperature change
Weather change
Feeling too hot or too cold

Areas included in Reflex and Sense Challenges

Ears (Auditory processing).
Eyes (Vision processing).
Touch (Tactile processing - through the skin).
Balance (Vestibular processing).
Body Position (Proprioception).
Stuck or Shut Down issues. (Form of protection from overload)
Repetitive Behavior (Perseverative)
Muscle Responses to stimulation

Signs of sense challenges (Sensory Integrative Dysfunction)

Overly sensitive to touch, movement, sights, or sounds.
Under reactive to touch, movement, sights, or sounds.
Easily distracted.
Social and/or emotional problems.
Activity level that is unusually high or unusually low.
Physical clumsiness or apparent carelessness.
Impulsive, lacking in self-control.
Difficulty making transitions from one situation to another.
Inability to unwind or calm self.
Poor self-concept.
Delays in speech, language, or motor skills.
Delays in academic

What are some signs of reflex challenges?

Toddler or older child still panicking when startled.
Unable to adapt to light and dark lighted areas.

Help for Reflex and Sense Challenges

Children who are sensory self-protecting may have difficulty concentrating or interacting in the environment. They may shut down or over react as they try to protect themselves from common everyday elements.

Adapt environments (clothing, fluorescent lights, smells).
Provide calm safe place for child to go when overwhelmed. (pup tent, large box, tree house)
Provide comfort item (blanket, bottle, pacifier, jacket).
Know trouble areas and prepare
- Long lines
- Crowded places (hallways, elevators, spaces).
- Unstructured areas (lunchrooms, gyms, large open areas).
- Busy places (circus, family events, parades, sport events).
Introduce things that cause conflict to your child in very small amounts and periods of time.

Jodee Kulp Author Our FAScinating Journey Families at Risk, Journey to Life and co-author of The Best I Can Be: Living with Fetal Alcohol Syndrome or Effects with her daughter Liz at 13 who believes all persons with prenatal exposure deserve the opportunity to be the Best They Can Be!

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