FASD presents complex and dynamic challenges for families. Sometimes these are hard to manage or treat. It is not uncommon for some people to misunderstand the unique problems that children and families who live with these challenges encounter.
The thing I’m learning most from the stories told of families living with a child with an FASD is there is a lot of unpredictability. We will face situations we did not expect and have to figure out what to do. I call it the ‘eggshell effect’ (as in I’m always feeling a little like I’m walking on them!)…”
—Mother of son with FASD. Posted originally here
According to the National Organization on Fetal Alcohol Syndrome (NOFAS), “Children diagnosed with FAS or those affected by FASD often come from unstable families and may be at greater risk for physical abuse, sexual abuse and neglect. Perhaps as many as 85 percent of children with FAS are being raised not by their birth parents, but by grandparents or other relatives, foster parents or adoptive parents. Many of these children have life-long learning and behavioral problems caused by organic brain damage. This is extremely stressful and can be overwhelming for any parent or caregiver. These children may require a range of specialized social, educational and legal services in addition to medical services in neurology or other specialties.”
This section provides information and links to several of the issues faced by families and caregivers who love one or more persons affected by FASD. Click a topic below to review it.
Types of Issues
Parents of children affected with FASD often mention experiencing stress or conflict with members of their extended families. These issues are similar to those faced by many families of a person affected by a serious (and hard to understand) disability, such as autism, ADHD, or mental illness. Most criticisms are motivated by sadness and disappointment that the real person does not fit the ideal of what the grandparent, aunt, uncle or other relative expected of the child, teen or adult.
In general, parents say that unsolicited advice or opinions seem to be the largest problem. Comments such as “If you would do ‘this’, then this problem would just take care of itself.”
Criticism of treatments that the parents seek for their child is another problem. This is usually aimed at a parent who has chosen an experimental or controversial therapy, such as a nutritional approach or a psychiatric drug treatment which the relative doesn’t trust.
Accusations that are thinly veiled, which are interpreted (and sometimes intended) as accusations of near child abuse are an issue as well. Parents who elect to not vaccinate their FASD child are often the targets of these comments.
The “adoption attack”is one card that may be played by a grandparent of an FASD child. This person usually was not in favor of the marriage or of adoption to begin with, and approaching the disabled child scenario is only too happy to be able to finally say an “I told you so.” This exhibits itself in the blaming of FASD on the person that married into the family.
The attempt to take over and assert control of the familyby an in-law is an extreme manifestation of the problem. Any in-law can do this, and by disempowering the parents of the FASD child, the entire family unit becomes at risk.
Don’t preach or lecture. Ask your in-laws questions that lead the conversation in the direction you need it to go. Don’t let them off on a tangent, if they try to take over at this point. Gently redirect the conversation, as you need it to go.
In-laws who feel powerless want to help. The problems result when the method of their help and your decisions clash. Rechanneling this is a way to keep them involved, help them regain some control over a loss they are unsure of how to cope with. In the process, it will help you.
Analyze how you can enlist your family’s help. Babysitting, researching, interacting with your FASD child to enhance some therapies you have started are some options. If the in-law who has been a problem begins to feel useful and instrumental in a child’s progress, you have made an adversary into an ally.
When you deal with your extended family and you sense that their dreams for your child’s place in the family are shattered, reach out to them. Remember, you aren’t the only one grieving, and they most likely have no support among their own friends. If grandma and grandpa had planned on taking their grandchild every summer on fishing trips, and you know this isn’t going to happen, not only do you have to redo some goals and plans, but so do they. They have a grief process too. Talk about it, openly, honestly, and with sensitivity. Invite them to your support group, to visit your child’s school or to an IEP meeting with you, or to accompany you to an appointment with your child’s doctor.
With grandparents in particular, you may have to expend a great deal of energy in educating them. It is only natural they would think that if you would just do “thus and so” this problem (FASD-related behavior) would go away. FASD was not talked about when they raised children, and probably unheard of when they were kids. Help yourself by giving them books and by printing material from Web sites you have found helpful. Don’t give them or email everything all at once, but over time teach them what you know, and show them why you do what you do.
The bottom line with in-laws is really very simple: Figure out their motive for attacking you (or ignoring you) and then communicate to that motive.
Remember that communication is a two-way street. Be willing to listen. And always remember that you are in charge of your child and his or her treatments. You may find yourself biting your tongue a lot at first, but patience and persistence can go a long way in establishing a stronger and happier relationship with your extended family.
Your Extended Family
When the Extended Family Doesn’t Understand
Special Needs Children and Holidays with Extended Family Don’t Always Mix
Extended Family Members’ Emotions in Special Education
ASD and the Extended FamilyAutism Spectrum Disorders (ASD) and FASD are both often misunderstood by extended family members, and this site may have useful information.
Helping Parents of a Child with RAD (Reactive Attachment Disorder)
A Letter to Grandparents of Children with RAD Children with fetal alcohol damage are sometimes also diagnosed with RAD (Reactive Attachment Disorder, and symptoms may overlap.
Grandparents of Kids with Special Needs A support network for grandparents; not FASD-specific.
The Friendship Circle. A site devoted to families of children with special needs. Not FASD-specific, but full of brief articles on helpful topics.
A long-time caregiver writes an honest plea for help and support Not FASD-specific, but an interesting piece about the “costs” of long-term caregiving.