Become a Member of Dup15q Alliance Extended Support Community

It’s wonderful when families of children with special needs have a support system that’s strong and reliable. We know extended family members and friends likely want to do what they can to show support, and provide help and love but often do not know where to start. Registering with Dup15q Alliance will help to keep you up-to-date on the latest information regarding chromosome 15q duplications. You will receive our newsletters, conference announcements, and special mailings.

REGISTER HERE

Learn

• Take some time to understand dup15q syndrome and its Signs and Symptoms
• Dive deeper into the Medical and Health Care needs of those with dup15q syndrome
• Stay up to date on Dup15q Research and Clinical Trial Opportunities
• Attend a Dup15q Alliance Family Conference

Get Involved

• Join the Dup15q Alliance Extended Support Facebook Group.
• Volunteer to Join a Dup15q Alliance Committee.
• Offer to host a Dup15q Alliance regional gathering.
• Get involved on the Governmental Advocacy Level
• Support the Dup15q Alliance Mission by Making a Gift.

Ways you can support your Dup15q Families.

Childcare and Support

• Babysit.  Special needs parents need breaks, but finding loving caregivers can be challenging. Offer to babysit for their children for a few hours so they can go out on a date or simply catch up on some much needed rest.
• Take their children to and from school.  Have a child who attends school with a special needs sibling? Offer to give them rides to and from school! This is such a gift not only to the parents, but also to the children. What a treat to be picked up or dropped off by a friend!
• Learn about their child.  Beyond googling their child’s diagnosis, learn about your friend or family member’s child specifically. The saying is true, if you’ve met one child with a disability you’ve met one child with a disability. Lovingly ask questions and listen to their answers. Ask what their child will need at family gatherings. Some children do not respond well to bright lights, loud noises, crowds or new foods. You may want to be involved by coming up with special ways to connect such as in a therapeutic play or with specific foods.
• Drive to and attend doctor’s appointments.  It is always great to have a second set of ears when listening to medical information or an extra hand to entertain the special needs child so mom/dad can focus on the new information.

Household Help

•  Light housework.  With so much to do each day, housework can pile up for special needs families. Offer to do a little housecleaning and it will be appreciated more than words can express!
• Help them sort and organize.  Special needs families are buried in paperwork because everything requires it. From our children’s IEPs, to medical documentation, to data collection, to applications for services, the paperwork is boundless. Sometimes, we just need a helping hand to go through it all and organize it before we can act on it.
• Make meals.  Making meals takes time and time is often scarce. Make a meal that they can simply heat and eat — what a treat! *Be mindful they may have dietary needs and be open to those needs.
• Walk their dog.  Offer to walk the family pet while they are at an appointment, work, or school and watch their hearts melt as they see you care not only for them, but for their fur baby as well.
• Grocery shop for them.  If you have children who are in school or who can make it through the store with relative ease, offer to pick up a few things at the grocery store. Special needs families are often juggling meltdowns, adaptive equipment, and judgmental stares while they shop. By shopping for them, you will save them not only hours of time, but also a great deal of stress.

Emotional Support

• Ask them how they are doing.  And encourage an honest answer. Oftentimes, special needs families feel like they have to put a positive spin on their situation because they don’t want to come across as complaining or weak. They need to be able to let off steam, though, and be honest about how they are feeling – happy, sad, or anywhere in between.
• Send them a handwritten note.  Sometimes, there is nothing sweeter than getting a card in the mail from a friend or loved one that simply says, “I love you and I’m rooting for you.”
• Listen.  Special needs families need to talk and be heard without judgment. Try to avoid giving advice and focus instead on offering love and encouragement.
• Send a text message or email.  Keep it simple and don’t require anything from them in return: “I’ve been thinking about you and wanted to say hi! I know how busy you are so don’t worry about writing back. Just know you are loved!”

Thoughtfulness and Flexibility

• Invite and keep inviting!  We love being invited and attending anything we can. Even if we can’t make it, being invited means so much. If we have to say “no,” invite us again in the future!
• Be open to plans changing.  Special needs families’ plans can change on a dime because their children’s needs can change on a dime. Try to be understanding and not take it personally if plans have to be cancelled or changed. Relieving us of the pressure to make it to an event if our children simply aren’t up for it is a huge help!
• Try to be mindful of their time.  Be considerate of their time and hectic schedule. If 30 minutes to visit is what they have to give, lovingly enjoy it! Don’t make them feel guilty for what time they can’t give. Instead celebrate and cherish what time they can give.
• Keep advice to yourself (unless we ask for it).  Special needs families need empathy, not advice. Believe me, I struggle with this one, and I am a special needs mom! But what we need most is empathy and compassion, not ideas on how we can be better parents. We are constantly weighing the advice of specialists, educators, therapists, and providers. Let us talk about the advice we are receiving and, if we ask for your opinion, please offer it! Otherwise, try to keep advice and opinions to yourself.
• Be a friend through thick and thin.  It sounds so simple, but it’s perhaps the most important of all. Be a friend through thick and thin, good and the bad, seasons of contact and seasons of distance. Forming friendships is not easy for special needs families because of the restraints on our time, energy, and finances. If you’ve formed a friendship with a special needs family, know how special you are to them. Reach out, offer to help, extend love and kindness through it all.

Give, If you can

• Give a gift card.  Talking about finances can feel awkward, but the truth is the financial aspect of being a special needs family is overwhelming. Most families’ budgets are extremely tight in order to pay for their children’s therapies, appointments, copays, transportation, childcare, special programming, dietary needs, medications, and more. Additionally, quality childcare is expensive and difficult to find. A gift card for gas, groceries, or copays goes a long way!