Coping after the Diagnosis
After the diagnosis...
It can take a lot of courage to go through the process of having your child assessed and possibly diagnosed on the Fetal Alcohol Spectrum. Even if you knew in your heart of hearts that something was not “quite right” about the path your child’s development was taking, hearing from a professional or reading the diagnosis in a report can still be experienced as a “shock” or a “psychological blow” to your system. Although there are many common experiences that parents have, there is no right or wrong way to experience the news. There is also no set time frame to be followed. Your feelings, reactions, and actions are your own. The information listed below is intended to provide you with some of the experiences many families have, some suggestions for things to do (or pitfalls to avoid), and some guidelines for recognizing when the stresses of parenting might be signalling you to turn your attention to yourself.
There is a general understanding that receiving a diagnosis on the Fetal Alcohol Spectrum is a major stressor for a family. Although the majority of families rally together over time, and find ways to manage the demands on them, both practical (e.g., multiple appointments, paperwork, extra costs) and emotional (e.g., opening yourself up to accepting help, facing the frustrations of waiting lists, handling embarrassment in public situations), there can be many peaks and valleys to negotiate. Research has shown that, for the vast majority of people, seeking and accepting support from your family, informal social networks, and professionals can make a huge difference in how well you maintain your own physical and emotional well-being.
Listed below are some of the reactions parents may have when dealing with a diagnosis on the Fetal Alcohol Spectrum or other long-term developmental disabilities: shock, denial, guilt, ambivalence, self-doubt, anger, sadness, relief, anxiety, and even hopefulness. Following your initial reaction, you will likely experience a cycle of grief. Grieving for the child whose life may have turned out differently than you imagined before they came to you through birth or adoption. Grieving for the child you thought you were going to have. Grieving for yourself and some of the losses you may anticipate (return to a career, spontaneity in everyday things, time for yourself, etc.) and/or grieving for relationships that may change or be lost (e.g., intimacy with a spouse, disappointment in someone’s reaction). As with other forms of grief, its intensity and duration varies over time. You may feel it “sneak” up on you at transition points (e.g., when a child begins/leaves school), on birthdays and other special events, or when other losses are experienced. At the same time, you may find yourself filled with hope, pride, and joy as you delight in your child’s gains and accomplishments, and the very important role you may have had in getting it to happen.
As mentioned earlier, how you react to your child’s diagnosis and needs will be as unique as you are. How you perceive the diagnosis may depend on the context; such as past experiences that have shaped your beliefs about how well you can handle the “curve balls” that life throws at you, your present circumstances (e.g., other stressors that are also present such as illness, financial worries, work demands, etc), or external factors such as the availability of resources, geographical location, etc. Three factors known to influence how well stress is managed include finding social support, feeling “in control,” and gathering information.
Ask questions of the person or team who has made the diagnosis; you are entitled to a follow-up meeting if some thoughts or ideas occur to you after you leave the office; feedback should be an ongoing dialogue; keep in mind that no question is a stupid question.
Ask for clarification if you didn’t understand some words or language used in a meeting or in a report; if there are inaccuracies of fact let the clinician know; if you disagree or have questions about something that was stated or written raise them directly with the author.
It is fine to take notes during a meeting, bring written questions to help you stay organized, or bring along a support person (friend, family member, professional) to be a second set of ears and/or take your notes.
There can be a desire to read everything and watch everything about FASD after the diagnosis; seeking information is a very helpful thing – but pace yourself; if you’re uncertain about where to start ask one of your team members or support person for suggestions, and don’t berate yourself if you don’t get to it right away.
There is lots of information about FASD available on the internet; keep in mind that information on the net is not reviewed or screened for accuracy; talk to other parents about websites or organizations that they have found helpful; check out what you’ve heard or read with your team members, who may be able to give you a balanced perspective on a treatment strategy or program.
Join a support group or participate in parent workshops – if that’s your style; some people are more comfortable in one-on-one situations, so you may want to discuss your need to talk to a parent “who’s been there” with one of your team members, who may help you arrange a connection with someone in similar circumstances (and obtain consent to pass on their name).
When attending a parent group or hearing other parents talk, keep in mind the diversity that is typical of FASD in terms of children’s abilities, the severity of problems, behavioural challenges, etc.; some experiences may relate to your own family’s and some may not; sometimes hearing about a child who is older and functioning well can inspire hope, but be careful not to be discouraged by stories of huge struggle and difficulty.
There is no one method or treatment that must be implemented to ensure that your child reaches his or her potential; intense early intervention is critical, but this intervention can take many forms; beware of people’s individual passions, which are usually shared with good intentions, but which may lead to unnecessary anxiety and guilt (i.e., you must do ‘x’ and you must do it now!).
Have faith in your intuition and knowledge of your child/yourself and prioritize problems or goals that you wish to tackle; notice if you’re feeling pressured to accomplish something, like toilet training, because it’s important to someone else (i.e., grandparents) and you want to please them or want them to stop nagging/judging you.
Although you may hesitate to share information about the diagnosis with family and friends, most people find that it is a relief to do so; it can help others to understand why your child may do things that appear unusual, or why you seem to have difficulty “managing” your child’s temper tantrums or “out of control” behaviour. Understanding can be the first step to helping you.
Most people want to help, and suggesting some practical or even very basic things they can do will be received with enthusiasm. For some people this may mean helping to implement programs (e.g., encouraging functional play on the floor) or babysitting; for others it may be a bit more removed, such as taking a sibling out for the afternoon, running errands. For others it may be listening to you, going out for coffee, and/or bringing their child over for a play date.
All parents make mistakes, and no one makes the “right” decision or acts admirably all the time. Do the best you can. All activities do not need to be “therapeutic”; sometimes you can play, because it’s just fun! You can just “hang out,” because that’s what parents do with the children they love and care about.
Remember that change is difficult, and try to address one issue at a time to avoid being over-whelmed.
Programs like “Sibshops,” hosted by KidsAbility and Playsense can be helpful for siblings.
Ensure that you have accessed all the financial and other resources that you may be entitled to: Assistance for Children with Severe Disabilities, Disability Tax Credit, Special Services At Home, Disability Fitness Tax Credit, and Registered Disability Savings Plan.
An excellent book (available at Chapters) written by two parents is recommended: Baskin, Amy, and Fawcett, Heather (2006) More Than a Mom: Living a Full and Balanced Life When Your Child has Special Needs.
We recognize that parenting children affected with fetal alcohol may be extremely stressful. Watch for these signs and remember to take care of yourself.
An increase of stress-related physical problems such as tension headaches/migraines; lower resistance to colds, flu; worsening of an existing chronic condition such as asthma, arthritis, or diabetes; emergence of new medical conditions (e.g., eczema, chronic fatigue). See your physician or other health care provider, and follow their advice. Check your extended-health insurance plan from work, to see if you are eligible for payment for a registered massage therapist, physiotherapist, chiropractor. etc., if these kinds of complementary therapies are recommended.
Anxiety, irritability, restlessness, feeling “at loose ends,” having trouble concentrating, agitation, and pacing.
Burnout: feelings of apathy/negativity, chronic tension, missing appointments, constant fatigue, using medication/alcohol/drugs to cope with the day.
Depression: sadness for at least 2 weeks without a break; tearfulness; changes in sleep/appetite (i.e., either more or less), persistent negative thoughts about self, others, the world; loss of interest in things that usually give pleasure; hopelessness; suicidal thoughts/self harm.
Anger-control problems: impatience, short-fuse, explosive behaviour, aggressive/abusive language, destruction of property, hurting others.
If you are experiencing any of these psychological difficulties, again please consult with a health care professional (good starting point may be your family physician). Your Employee Assistance Plan (EAP) may provide access to therapy and the like.
Reprinted with permission from Fetal Alcohol Spectrum Disorder Resource Guide, Guelph Wellington Fetal Alcohol Spectrum Disorder Action Group, 2011.