Kari’s email began, “Dang! Couldn’t I have just one professional appointment with my daughter Anna where I don’t have to advocate?  It doesn’t seem to matter whether I am dealing with the medical, educational or social service systems – being in public is overwhelming and my child’s behavior can be unpredictable. The simplest activities that other families take for granted can result in disasters for families like mine.”

Parents with children who have neurological differences have to pre-think and educate anyone who comes into contact with their child/children. We cannot change behaviors that are caused by organic brain damage.

When things are not working we have learned to change the environment or circumstances to help our child manage.

·        We do our best to find professionals who understand our child’s neurological differences. And if we can’t we work hard to educate and provide support for both the professional and our child.

·        We keep a tight routine in our home. Random appointments are a transition from our normally structured day. This means we tell our children that this is a normal routine thing. People go to the dentist to be healthy. People go to the doctor to be healthy and we do this a few times a year. Sometimes we have to do it more often when there is a problem. Then we go more often to get healthy.

·        We provide gentle cues with hand gestures, pictures and simple verbal commands. We are happy to teach professionals the healthy cueing our child understands.

·        Some of our children are overly sensitive to pain and others do not feel it. My friend’s son pulled out his healthy solid baby teeth to get money from the Tooth Fairy. He had heard in school other children got money under their pillow. He told his mom, pulling his teeth didn’t hurt one bit!”

Ultimately you’re on the same side – the professional and parent wants the child healthy. The child wants to feel good and be able to have a happy life. Fighting with a child with FASDs only makes them dig in deeper and resist. Trying to convince a child who is determined to stick with their own program is counterproductive. 

Now what is it going to take to get Anna back into the dental chair or even open her mouth? Some days we walk on the Wild Side!

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: Kari Fletcher, (www.mofas.org) 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),Lauren Runnion-Bareford (mom to 6 children with FASDs) and Sandra Stanton (www.ourbrainbuddies.com 

Sidebar 1

A Letter to Professionals from Kari Fletcher
(edited from original for foster families)

Dear Dr. -------

I am writing to explain a little about Anna’s disability and how it affected her appointment yesterday. As you know Anna has good days and more difficult days. Yesterday was an example of a more difficult day.

            Fetal Alcohol Spectrum Disorders (FASDs) are often invisible and your successful appointments with Anna camouflaged the reality of the insidious brain damage done by prenatal alcohol exposure. This means that some days Anna is very dysregulated and experiencing sensory overload.

            Her school experience stretched her to a point where she had no energy left to think or give. In hindsight, I should have rescheduled the appointment for morning instead of after school. I can assure you that Anna was trying her best to accommodate your requests.

            FASD often looks like misbehavior, willfulness, defiance, stubbornness, etc. and I understand your staffs’ frustration with my daughter’s refusal to have X-rays and her over-sensitivity to teeth cleaning. Anna has auditory processing disorders that mean lengthy explanations or a bribe exacerbates the behaviors. She does not understand consequences and she appears to function at a higher developmental level than she is capable. Yesterday one would view her behavior as a two or three-year old.

Anna did as much as she was capable yesterday and she left feeling like a failure. The promised toothbrush put back in the drawer for the “next time when she can behave better.” Expecting her to behave better yesterday was like expecting a person in a wheelchair to get up and walk. It wasn’t her fault she was unable to complete the tasks required. Her brain deficits and sensory processing disorders may be largely invisible, but are very real.

We will wait a few months before we reschedule another appointment in the morning and in the meantime I will work to once again rebuild my child’s self esteem. In addition we will practice behavior at the dentist; however, Anna does not generalize so unless I am in the room to coach her it will be difficult to build a behavior bridge.  If your staff would like further information regarding FASDs I would be happy to provide materials or do an hour in-service training.

Sincerely,

Kari Fletcher

Regional Resource Coordinator, Southern Minnesota

Minnesota Organization on Fetal Alcohol

www.mofas.org

Sidebar 2

Keeping everyone on the same side –

find common ground

For Professionals

• Listen to what parent says about child
  
  
  
  • Ask for ideas from parent to help child
  
  
• Be kind to the child – use humor, remain happy
  
  
  
  • Make exam area feel safe.
    
  • Prevent distractions – knocks on door, etc.
    
  • Let the child look at the equipment
    
  • Provide a play/pretend  area
    
  • Learn about the child’s interests and document them.
  
  
• Use full spectrum lighting
  
  
  
  • Consider having a lava lamp

For the parent

• Make appointments during less stimulating part of the day and at the time your child is at their best.
  
• Consider the location and the environment - fluorescent lights, type of music played.
  
  
  
  • Use noise blocking headphones, calming music
    
  • Allow sunglass to avoid light glare
    
  • Write a note – these are things to be sensitive of and thses are some ways we handle it.
    
  • Search for a professional who works with other children with special needs.

Pre-appointment ideas

For the child

• Visit the professional one or two times before the appointment to meet the professional
  
• Tour the clinic or office on a visit day
  
  
  
  • Model procedures on parent – look in parent mouth, take parent blood pressure
    
  • Practice sitting in the chair
    
  • Practice procedures without actually doing them
  
  
• Discover how your child experiences the visit.
  
  
  
  • Sit in the lobby and make four pictures before you leave. Have child draw everything they smell on one paper, everything they see, hear and taste on the other papers. This will become their Going to the ---- book. Laugh and enjoy this time together. Fill in the drawing with words the child wants to remember.
  
  
• Be playful.
  
  
  
  • Have a blood pressure kit, dental mirror, stethoscope and practice.
    
  • Read simple going to the ….dentist, doctor, hospital…books
    
  • Use humor
  
  
• Bring a comfort item
  
• Immediately when you are done do something really fun with the child. Just do it because the child went. Forget about whatever behavior the child had. This can be going to the store for a toothbrush when they have not been given one.