10 Things To Know About FASD: We Talk Too Much

Day 12

One of the biggest challenges about working with adults and children with FASD's is that often need help with interpreting what is being said and they need it presented in a way that they can understand.   

When talking with my daughter, she tells me the teachers talk like the teacher from Charlie Brown. Unlike Peppermint Patty, my daughter would sit there quietly trying to process what was being said.

She would watch what the others were doing to see what book to take out, what page to turn to or whatever they were doing for a cue to know what to do next. In first through third grades, she did great in a classroom where she was mainstreamed with kids with hearing challenges due to the interpreter and the all the visual instruction!  When they took away what worked she struggled.

Sometimes we speak too fast and part of the dialogue is lost in translation.  Think about missing key words in an instruction and to later learn after the fact that you did exactly opposite what was expected due to missing part of the instruction.   For my Mackie, he does not process Do not. He hears the instruction first and completely misses the do not.  So he does the vary thing you asked him not to do again and again.   So if we tell Mac  "Do not hit the cat."  He will hit the cat again and again again until we we change the command. We have learned that we need to tell him what to do instead. "Be nice to the cat!"

We talk too much with persons with FASD. We need to talk slower, simpler and know how the person with FASD needs us to communicate. We may need to give 30 to 45 seconds for processing and then allow more time for them to  access their response.   Others may need repetition or it written to process the understanding.

With my 6 with FASD's each have their own individual strengths and challenges. No two are alike. While one may be able to process normal spoken language, when disregulated or off balance,  he may need back up written messages.  Texting with my adults with FASD has been a very wonderful tool for me to use when communicating and they can go back to double check the instruction if they forget.

A couple of my kids are athletic.  But for one, she was fast!  She as an eighth grader ran times that would have qualified her for the state meet her brother attended.  She has a processing delay.  She was always late off the starting line.  She didn't hear the starting gun.  She didn't go until after the racers were off their mark.  She still moved on to win the race. But she was getting yelled at by the coach for her delayed starting.  I stepped in and talked with the coach and we got someone who gave her a hand signal (accommodating her the same they would a deaf runner).  She shaved seconds off her time.  She shined.  But high school happened, state rules interfered and she once again was frustrated by not knowing when to go and quit track. Today I would have known better how to fight for her right to accommodation. 

The saying "Hear it and they often forget. See it and they may remember it."  It is a must to remember with many with FASD's as they use visual memory much better than anything given auditory.

Advice from someone who had to learn the hard way.  I thought they understood. Sometimes he could tell  me verbatim what I said right after the fact.  Other times they would agree and would tell me they will do it or they could do it. But not.

 Just because a person with FASD can answer the question and know the answer does not automatically mean they understand what you said.  Double check for understanding and be ready to explain -- connect the dots for what they are missing.

In some with FASD's  due to executive function deficits, cause and effect challenges what they know and say cannot always be put into action.  It may even be understood in one way and may not even work in reality. And what one day they can do, may not happen tomorrow. What is known in one setting may not be translated into another.

Can I say this is complex stuff?  Think about how frustrating it is to have processing challenges in our complex world due to no fault of their own.

We would not expect a deaf person to go to an appointment with out an interpreter have a tool to hear. Persons with FASD need help with cognitive translation in ways for them to process and have full understanding of our complex fast moving world.

I have gone with my adult children to SSI, Medicaid, coaching job interviews from afar. I have helped connect the dots with the justice system and translate the legal jargon to my child. I am there as their interpreter, coach and friend to make sure that they expand their confidence and supported. 

It has been a l9 year learning curve and I am still learning.  My adult kids with FASD are more open now to helping me understand.  They have developed many tools and ways to help compensate and they are amazingly resilient. They each have incredible gifts and talents and we need to help support and accommodate the challenges.

Anny