- Parents will be frustrated when attempting to parent children with FASD and for good reason as it is a lot of work caring for a child with a disability as complex as FASD (These families often look a bit crazy to the outside world) So glad to finally have a valid excuse. :)
SUPPORT FOR THOSE PARENTING FASD CHILDREN
-ongoing support for coping
-respite even when not asked for
-therapy for grief/loss work at many stages of development
-a case manager
-clarity of expectations for the child
-connection to other caregivers
-getting a diagnosis for a child we suspect has been prenatally exposed to alcohol is not optional
-we owe our children the privilege of having a diagnosis
-having FASD can be catastrophic without support
POSSIBLE PRIMARY DISABILITIES FOR THOSE AFFECTED BY FASD
-auditory memory impairments for verbal recall
-decreased verbal and nonverbal fluency
-information processing disorder
-impaired motor development
Primary disabilities are what come with the territory of of having been exposed to alcohol
POSSIBLE SECONDARY DISABILITIES
-mental health problems (could also be a primary disability)
-disrupted school experiences
-trouble with the law
-need for confinement
-abuse of alcohol and other substances
-having children they are unable to care for
-problems with employment
-lack of consistent ability to meet their needs
The above list is why parents and children affected by FASD need a plan. Without an expectation of what is coming next developmentally and behaviorally, the family is left adrift. When a plan is made, we can work on creating the environment the child needs ahead of time thus being ahead of the game versus scrambling to catch up. A plan will also keep the child safe as children with FASD are at high risk for unsafe behavior/addictions and the like.
Ironically children with FASD have expressive language skills well beyond their age. On the surface it sounds like they have it all together so we often make the mistake of assuming that since the child is making logical sounding comments he understands what he is saying. This remains the single greatest challenge for those working with FASD.
-some children with behavior problems do not have the mental capacity to want to "shape up."
-parents must remember that the childs behavior isn't willful disobedience it is a result of a brain injury.
-children are "all about me and what I want in the moment" people with FASD stay in this place until well in their 40's
-children with FASD need a much more rigid and sheltered environment than their peers of the same age. Some children can manage getting on the bus and going to school, for others that is to much for them.
-we need to think, "What can I do to make it possible for my child to go through the school day with out getting into trouble."
-NEEDS OF AN FASD CHILD
-assessment of strengths and limitations
-increased and ongoing supervision and structure
-living in a family that understands the disability
-advocates for at home and at school
-involvement of a care management team
-rehabilitation (speech/language, OT)
-ongoing Neuro/Psych evaluations
-Individual Education Plan
-Functional skill building
-behavior management focused on preventing negative behavior
-prevention of secondary disabilities
The training was directed to those parenting adolescents but I felt there was a lot of good information for those of us who are parenting younger children. It also opened my eyes to why Joseph faces some of the struggles he does and what our responsibility is as his parents. We have been advised to get Joseph into the mental health system now so when problems arise we are already in the system and don't have to wait months for help when we may be in crisis. I hesitated because of the bad experiences we had when we sought help for Braden. Also having CYS tell me I am just looking for problems in my children makes me second guess myself, what if others accuse us of the same thing and we are accused again?
here is the link to the training I was listening to
*I also want to clarify that I am not asking for help respite or otherwise, I simply related what was shared.
Another example of FASD:
Joseph was in a funk again and after days of going in circles trying to figure out what was bugging him he told me he is afraid I will die and then no one will come to school and pick him up. He was obviously trying to imagine living at school. I said if I can't pick him up, someone else would be there. He quickly shot back, "What if you had an accident and no one knew you were dead?" I told him someone would look on my license and they could figure out who i was. I also showed him the letters ICE (in case of emergency) behind Deans name on my phone and explained that anyone who looked at my phone would know to call daddy. The look of relief he got was painful to see! I asked him why he didn't tell me earlier what was bothering him and you know what he said? "I didn't know what was wrong before." How frustrating it must be to feel upset about something but have no idea what that something is!
Daddy and Lia relaxing