Helping a friend or family dealing with
Tay-Sachs, Sandhoff, GM1, Canavan and related diseases
Friends and family often struggle to find ways to be helpful, supportive and understanding. The most important way to be supportive is simply to be there. Caring for an affected child is extremely time-consuming and emotional and physically draining. It can be difficult for the parents to reach out and effectively communicate their needs. Be proactive and reach out to them! Also see Gift Ideas
Things to Say
Don't say anything - just LISTEN! Ohhh...unhuh...hmmm
I don't know what to say
I wish I could say/do something to ease your heartache
Repeat back what you've heard: Sounds like you are feeling very angry, depressed, alone, frustrated, overwhelmed etc.
Things NOT to Say
I understand what you are going through
Compare experiences
Cheery platitudes: silver lining, everything happens for a reason etc.
12 Ways to be Helpful
- Offer Concrete Help - Don't Wait to Be Asked
Childcare, routine household tasks, and even trips to the supermarket can exhaust our energy. When you are out running to the grocery store, dry cleaners or drug store ask if the family needs anything picked up or if there are any other errands you could do while you are already out. Be a cook, baker or buy a nourishing and healthy treat. - Offer to Babysit on Occasion
Parents go to great lengths to enjoy ordinary pleasures. Going out for an evening with their spouse, or taking time for themselves is rare - something most people take for granted. If you are comfortable with the child, offer to babysit. Offer to care for their other children if the ill child has to go to the doctor or hospital. When the parents are sick themselves or have had an especially difficult time caring for the sick child, offer to come over and help distract the other children. - Learn About the Disease
All people close to the parents, especially family, have their own need for information. If the parents do not have information available, contact the NTSAD National Office at (617) 277-4463 and tell them you are seeking information. This way less burden is placed on the parents for explanations. By becoming knowledgeable you will increase your comfort level in caring for the child when you babysit or even just visit. - Seek Support for Your Own Emotional Needs
To be a support to parents, you may want to turn to others for help with your own grief. Convey your sadness, but limit your dependence on the parents, who have limited emotional reserves and must focus on supporting themselves and their children's grief. Grandparents, in particular, may find it helpful to talk to other grandparents of affected children. NTSAD has a Grandparents Support Group. Again the NTSAD National Office will be able to place you in contact with others. - Provide Companionship
It is easy for parents to feel isolated and alone and too tired to reach out. Offer to come along to a doctor's appointment. Make a weekly breakfast date, ask to drop in with coffee and pastry, offer to take a walk, or call on the phone. If you are family or a close friend from out of town, ask if the family can manage a visit. You may want to arrange to stay in a hotel. If you stay in the home, suggest meals are carry-out or offer to cook. Lend a hand by washing your sheets and towels before leaving. Try to minimize adding any extra burden on the family. Make every effort to visit. This family needs to know you care and you do not want to miss visiting and getting to know this special child. - Organize Family Get-Togethers
Offer invitations to the whole family to visit your home. The simple mechanics of feeding, transporting, and caring rule out many activities families take for granted, such as going to a ballgame or even to a mall. Being invited to someone's home may be the only type of activity a whole family can do together. - Invite Siblings to Participate in Your Family Outing
Siblings of children with serious illnesses often miss out on fun. Parents worry about these missed opportunities and often feel guilty about it. Offers by family and friends to entertain siblings are valuable to both the children and their parents. - Make Efforts to Help Parents Stay in Their Life
Even when consumed with the challenges of caring for an ill child, parents have and need careers, hobbies, interests and other relationships. Show interest in all facets of parents' lives. Also, be willing to share what is going on in your life, even the hardships. Maintain reciprocity in your friendship with parents, as this is important to both you and them. - Be Yourself
If you don't know what to say, be honest. If you are uncomfortable handling a child who is weak or stiff or has a feeding tube, let parents know. There are many other things you can offer. Use your strengths to help. (Don't offer to cook if you don't for your own family.) - Listen First
Parents of children with serious illness have a lot to say. Feelings expressed are not right or wrong, they simply are. Many times expressions of anxiety or frustration are NOT requests for advice. Wait to find out. - Present Suggestions as Suggestions not Advice
Advice giving can easily get in the way of support. Serve as a resource to families but never say,"You should..." - Relate to the Child
Acknowledge an affected child, even if s/he can't talk or respond in obvious ways. A gentle touch, a kiss on the forehead, or a few sweet words are special gifts. Do not focus solely on the disabilities. Ask the parents what the child would like. Perhaps the child could benefit from hearing a story or a song, or feeling a soft stuffed animal. Not only will the child enjoy the attention, but the parents will appreciate their child's being treated with such love.