[Excerpted from Damaged Angels: An Adoptive Mother Discovers the Tragic Toll of Alcohol in Pregnancy by Bonnie Buxton; copyright © 2005 by Bonnie Buxton. Reprinted with permission.]
Donna Debolt and Mary Berube, social workers specializing in FASD, have developed a simple document outlining the needs of families living with affected children.
The Debolt/Berube paper, “Guidelines to Intervention in Families,” outlines how social workers can best meet the needs of the various kinds of families in the fetal alcohol spectrum. Nearly all adoptive and foster families would be classified as “Unaffected Adult Caring for Affected Children.”
The description of the “Unaffected Adult” dealing with the child with FASD resonates with Mary’s experience as a mother of two adult sons with FASD. The authors describe the parent as reporting “high frustration, exhaustion, isolation and depression.” He or she uses crisis language; may say “crazy things,” and may want the child or children out of the home. The parent may also have problems with adult relationships, lose his sense of humour, say that “nothing works,” and claim that previous attempts to find help were useless or damaging. He may be in financial crisis, and may have developed addictions that need to be assessed (in my case, chocolate chip cookies).
Key things that the “Unaffected Adult” needs are
- ongoing education about FASD -- in order to learn caregiving strategies, and understand behaviours of children affected by prenatal alcohol;
- support before and through her child’s diagnosis, and ongoing support afterwards;
- therapy for grieving and loss;
- connections with other caregivers;
- a case manager;
- and my favourite, respite even when not asked for (rarely available in most parts of the world.)
Debolt and Berube also outline the needs of children with FASD -- supports they rarely receive, supports that all of us should be fighting for. They need
- early diagnosis of FASD, followed by assessment of strengths and limitations;
- protected environments, increased supervision and structure. (i.e., SCREAMS) ;
- a supportive family that understands their disabilities;
- a management team, which could include professionals in medicine, speech/language, education, skill-building, and behaviour management focussed on prevention of behaviours. (We can’t change the child: we have to figure out a way to change the environment.)
- I’d like to add another need: financial assistance. Nearly every family of FASD children is desperately short of cash, because of the youngsters’ many special needs.
Debolt and Berube also look at the presentation and needs of the “affected adult caring for the unaffected child,” and “affected adult caring for the affected child.” I take comfort in their statement that unaffected children whose parents have FASD often display “amazing strengths.” We’ve observed these qualities in our two small grandchildren -- emotionally hurting, yet as valiant and tender as Hansel and Gretel.
Judging from the experience of families I know, all over the world, the needs of children with FASD and their parents are almost never met. Yet investing in FASD families would go a long way toward preventing parent burn-out -- keeping families together, reducing the numbers of alcohol-affected adolescents who drop out of school and wind up on the street, and reducing expensive social problems such as poverty, homelessness, and crime.
