Interview with Heather Fawcett author of More Than A Mom.

Heather Fawcett is a writer who is active in volunteer work and special needs advocacy. She facilitates an Asperger syndrome parent support group serving over 450 family and professional members in her community. She has earned multiple B.A. degrees in English, Applied Studies, and Psychology from the University of Waterloo and Carleton University. A mother of two she lives in Ottawa with her husband and children. Her oldest daughter has Asperger syndrome.


AW: Tell us why you decided to write this book?

HF: Several years after our kids were diagnosed (both on the autism spectrum) we were browsing the booths at an autism conference looking for a book that spoke to the upheaval in our lives. All the books seemed to be about "how to parent your special needs child" or inspirational stories of parenting kids with special needs. We wanted more than parenting or inspiration -- we wanted practical advice on how other moms in our situation coped, stayed healthy, kept careers, and kept their family life intact. So we set out to write the book we wanted - one that would give moms the tools to lead the best life possible.

AW: Is it possible for moms of special needs children to find balance?

HF: Yes, but it’s always a work in progress. When you’re going through a challenging time such as a medical or behavioural crisis with your child, balance is impossible. At times like this you just need to keep going. Look at how you can get some sleep, get a break, talk to a friend. When things settle down, that’s the time to make longer lasting changes such as delegating more household chores to family members or setting up a regular “date night” with your partner.

AW: When a child is first diagnosed parents are so overwhelmed, what are some things to keep in mind at the beginning to keep us on track for achieving sanity and balance?

HF: Reach out to family and friends for help. A big mistake moms often make is not taking friends and family up on their offers of help (I admit having made this mistake myself). Ask them to make phone calls, make meals, do housework, or help with child care. Turn to other parents of special needs to help you navigate the maze of services. Ask your doctor, community hospital or local social service agency to direct you to special needs support groups. Taking regular breaks to clear your head is essential. Go for a 20 minute walk, read a magazine, or watch a funny movie. Finally, recognize that your life will become more predictable and less chaotic and this new life that now encompasses special needs will become your new "normal."

AW: Many times moms have to devote so much time to their special needs child, what are some things they can do to minimize that and put more time into their other children?

HF: Regularly, leave your child with special needs in the care of your spouse or other caregiver so you can devote some time to your other children. One-on-one time doesn't have to be a spectacular activity. Bring siblings along during errands or let them help you in the kitchen while your child with special needs sleeps or is cared for at home. Don't feel guilty about occasionally leaving your child with special needs at home with family or supports. Amy (co-author), her husband and their eldest teen took a week-long summer vacation together while their daughter with autism attended a day camp and was watched overnight by a trusted respite worker.


AW: What are some helpful tips for single mothers with special needs children?

HF: Single moms with special needs children must regularly carve out time for themselves or their health will suffer. We found that single moms relied heavily on families and friends to spell them off. If these supports are unavailable, find organizations such as Big Brothers/Big Sisters, Parents Without Partners, or those that match up families for support. Try to get out one evening a week to do an activity you enjoy. Or find time when your children are sleeping or at an activity to do something just for yourself. Never feel guilty about letting your housework slide.

AW: Often times our thoughts look to what the future holds for our children, what are some steps we can take now to plan for our children's future's?

HF: Teach your child with Asperger Syndrome to be as independent as possible. It's tempting to shelter our children forever but to do so does our child a disservice. Today there are far more opportunities for adults with disabilities and your child needs the skills to take advantage of them. They need to learn basic skills of daily living (toileting, feeding, dressing, hygiene, etc) and how to get along with others. Later, they will require more advanced skills such as taking transit, doing their banking, laundry, establishing school or work routines, etc. It's important to start teaching these skills early. Most importantly, children with special needs need to learn how to self advocate. Taking legal and financial steps to secure your child's future is also important (i.e., having a will, someone to act as a guardian, and investing in a trust, education savings plan, or other financial securities).

AW: We have seen some staggering statistics about the divorce rate among families affected by autsim. The rate among them is 85% which is much higher than the national average. What are some things parents can do to combat this dilemma?

HF: When we wrote our book, we heard similar stats. However, in our research we did not find any evidence. The few large scale studies showed divorce rates to be similar in special needs families to typical families. Research also shows that in strong marriages, having a child with special needs can actually make the relationship stronger - presumably because partners are focused on a common purpose. Most parents we surveyed (over 500) whose marriages broke down told us their marriages were weak to begin with. For those who had additional family difficulties such as unemployment, alcoholism or infidelity, the demands of special needs parenting were the "final straw."

Still, we don't need a study to know that having a child with autism (or any special need) in the household can cause considerable stress. The most important advice in our book is to work as a team. When both partners learn about the disorder, go to school meetings, carry out therapies, drive to lessons, etc. marriages stand a better chance. This is not to say that if you’re married to someone who is perpetually out of town or retreats into his work or hobbies your marriage will fail. Include your partner in the decision making and find ways to increase your partner's involvement one step at a time. Go to a talk or conference together or ask your partner to make the next therapist appointment. And make time to enjoy each other as a couple. Go out for dinner, watch a movie together, and enjoy some time when your child is not the central focus.

AW: Do you have helpful tips or ideas for moms who have to work but are struggling to care for their child while working?

HF: If you can afford it, contract out as much at home as possible, e.g., housecleaning, snow clearing, lawn cutting, etc. Often students will do this work for very reasonable rates—ask at your local high school. Also ask family and friends to help out. Some larger towns and cities have newcomer or volunteer agencies that may help you for free. This will free more time to care for your special needs child and the rest of your family.

Have backup child care in place before you need it. Should you be called away at a moment’s notice to tend to an overstressed child, you need to know who can pick up your child or care for your child so you can return to work. Find someone at work who is willing to trade off time when necessary. Make sure you know what vacation and other employment leave you are entitled to. In our book, we also encourage moms to seek out flexibility in the workforce. We include a sample proposal moms can adapt to negotiate better hours for example.


AW: What are some thoughts for mothers with adult special needs children?

HF: Many parents of teenagers and adults with special needs become discouraged as most services and supports center around children. Finding it difficult to relate, moms often drop out of support groups by the time their children reach adulthood. But by doing so, they may miss out on any new or innovative services being developed in the community. Instead, seek out organizations that focus on the needs of adults such as employment, post-secondary, housing, and independent living. Or, band together with like-minded parents and create your own group. At this time in your life it’s even more important to look after your health and stay connected. Since your child may rely on you well into the future, you need to keep up your energy and stamina.

AW: What do you feel is the most important thing for a mother of a special needs child to remember?

HF: You are the pillar that holds your family structure intact. If you crumble, your family tumbles down with you. Keep yourself strong by staying connected with friends, looking after your physical and mental health, and pursuing your own interests. You owe it to yourself and your family.

AW: You mentioned in your book that you can't undo what happened to you but you can help others, how can moms of special needs children get to that point?

HF: One day, you’ll get a phone call from an acquaintance or an agency professional. They’ll say: “I have a mom whose child has just been diagnosed with Asperger’s syndrome. Would it be all right if I passed along your number?” And even though your time is tight you’ll say “yes.” You’ll realize that you’ve reached that wonderful point where you’re an expert on your kid’s disorder, your community’s services and who the great doctors are in town. You’re no longer an overwhelmed, floundering mom, who is just coping. While things aren’t perfect, you’re all doing ok, and the time is right to help someone who is just starting out. And helping someone else feels great.

AW: One of the most difficult things affecting these moms is dealing with non supportive family members, they may think we are raising brats, or spoiling our children. What are some ways we can deal with this and bring them along side our team to help our child?

HF: Grandparents or older family members grew up in at time when children were seen and not heard. Yet, children with Asperger Syndrome rarely go unnoticed. For some family members, simply providing them with information about the disorder or having them spend more time with your family will help them come around. Give them pamphlets, point them to websites, and call or email regularly with updates on your child’s progress. Be frank with them about how you feel about their response to your child.

If despite these efforts you, your child, or family feel constantly attacked, protect your family by taking control of family visits. You may nix stressful family gatherings in favour of brief visits to your home at other times during the year. Or limit any face-to-face visits for the time being, remaining in contact by email or telephone. As one mom put it "I cannot control my family's acceptance. I can only control my own."

AW: Where can we buy your book?


HF: In the United States or internationally you can order the book through Woodbine House (www.woodbinehouse.com), most major bookstores, or online.

In Canada, the book is available at Chapters or through the distributor Monarch Books of
Canada (www.monarchbooks.ca). We also have links to Amazon.com and Amazon.ca on
our website at www.morethanamom.net.

AW: Do you have a website where you can be contacted?

HF: Amy and I also offer workshops for parents and professionals on the topics in our book. I also do workshops specific to Asperger Syndrome for parents, professionals and employers. See our website at www.morethanamom.net for more information.

Asperger's World would like to thank you for your time and insightful answers.

Interviewed by Allie Marmion