How Extended Family Can Support Parents of Special Needs Children

Written by Ilona Bannister

Published on February 21, 2024

• Extended family support can play a critical role in the lives of the parents and siblings of a special needs child. 
• Educating yourself about the condition, providing emotional and practical support, and facilitating inclusive and accessible family events are all ways that you can support a special needs family in your life. 
• Asking questions, communicating clearly, and being specific and direct about the help you are able to offer can help to take the pressure off of special needs parents. 
• Staying non-judgmental and providing loving encouragement are among the most important things you can do to support the people you love. 

When a member of your extended family has a child with a disability, your support for their parents, siblings, and the child can be so helpful and important. However, you may not know exactly how to help. You may feel awkward or unsure about what to say, what questions are okay to ask, and what kind of support the parents need. 

Rest assured that some of the most important things you can do for the parents of a special needs child are to let them know you’re there, that you are not judging their parenting, that you trust their decisions, and that you are ready to listen to their feelings and concerns and to provide loving encouragement. 

Practical support, like doing their errands, helping with pick ups and drop offs, getting them to therapies, and babysitting are also much needed and will be greatly appreciated. Read on for more on how extended family can support parents of special needs children.  

1. Understand the Child’s Needs and Family Dynamics

One of the first things you and other extended family members can do to support the parents of a special needs child is to learn about the child’s condition. Look it up online, watch videos, read articles, and check online forums that answer questions about the child’s condition. 

Rather than expecting the parents or caregivers to explain things to you and educate you entirely, take the initiative to do some learning yourself and to ask questions with loving intent.  Listen to their responses. Tell the parents about things you’ve read and ask them their views. 

It’s okay to ask questions, but always be mindful of the language and terms you use. If you are unsure about what words to use to explain a child’s condition, ask their parents so that you don’t feel awkward or make others uncomfortable. 

Showing a genuine interest in the child’s development and needs will be appreciated, even if you sometimes make mistakes.  

However, while you’re learning about the child and their needs, it’s important to recognize that their caregivers know them best.  Respect the knowledge they have and the decisions they are making. 

Parents will make decisions in their child’s best interests, and they have information and expertise that you may not be aware of. It’s important to listen to them and understand their choices without judgment. 

Unsolicited advice from family members can be frustrating and demoralizing for special needs parents. Give your opinion only if it’s asked for. 

Listening with empathy and acting with compassion are what special needs parents need from your relationship with them.  

2. Provide Emotional Support

Ask special needs parents how they’re doing on a regular basis. There’s often so much attention on their children that their emotional needs and feelings can be overlooked. 

According to the Dup15q Alliance¹1. Extended Support Network. Dup15q Alliance. https://dup15q.org/family-support/extended-support-network, an organization that supports families affected by Dup15q syndrome, many parents who have children with disabilities may often feel like they have to present a positive image because they don’t want to be seen as complaining or weak.  

However, they also need the space to be honest about how they are feeling without judgment. Let them know that you’re available to listen to however they’re feeling and that you’ll support them. 

Sending texts or emails of support is always a nice idea, but take the pressure off parents by letting them know that they don’t have to respond—you’re just letting them know that they’re in your thoughts. 

When the special needs child in your family achieves a milestone or has a breakthrough, whether big or small, celebrate that success. Recognizing even small successes is a big deal for special needs kids and their families. 

3. Offer Specific and Practical Help

When we say things like “let me know if you need anything” or “call me if you need me” to someone, our intention is to support the person who may be dealing with a challenge.  

However, it also means the person in need of help has to think of what’s needed and ask you to do it. Making it happen is left to them which isn’t very helpful, especially if they’re in survival mode. 

It’s much more useful to a special needs mother or father to receive an offer of specific and practical help so that they know what you can do to support them. 

Try some of these ideas: 

• Offer to babysit and give days and times when you’re available. 
• Text or call ahead of time to let them know when you’re grocery shopping, going to the pharmacy, going to the post office, or doing errands and picking up what they need. 
• Offer to drive to and from school, IEP meetings, medical appointments, or therapy appointments. 
• Spend time with the siblings of the special needs child or assist with their school pick-up and drop-off or activities. 
• Help with household tasks, like mowing the lawn, getting the car washed, or cleaning. 
• Give the gift of a cleaning service, food delivery service, or mobile hair cutting or beauty services.

When you let a special needs parent know what you can do as an extended family member for their child or their siblings, it can help them to delegate. It also helps them feel like they have a team they can rely on.  

4. Facilitate Inclusive Family Gatherings

Plan ahead for family gatherings²2. Support from extended family. LDExplained. https://www.ldexplained.org/social-inclusion/social-emotional-well-being-at-home/support-from-extended-family/#:~:text=To%20gain%20support%20from%20extended,related%20to%20your%20child’s%20condition.. Different children with disabilities have different needs, so it’s important not to make assumptions or have expectations about how the special needs child in your family will react to a social situation or even a meal. 

Children with sensory issues often have challenges around food. Ask about the child’s favorite food and have it on hand to help them feel welcome and less overwhelmed. 

Not everyone in the entire family will understand what developmental delays, ADHD, autism, or other conditions are about. They’re likely to have had few interactions with people with disabilities. 

Help other extended family members understand the child’s needs and get on the same page about how to interact positively and without judgment. Be aware that extended family of special needs children may need guidance. 

Creating a quiet space at family gatherings where the child and their parents can go to take a break from noise and interaction is also a great idea.  

We all know that not every relationship with every family member is healthy and supportive. If someone at a family gathering is inappropriate, judgmental, or making the child or their parents uncomfortable, don’t be afraid to let that person know that their behavior won’t be tolerated.  

5. Advocate for the Child and Family in the Community

Even if you can’t offer physical or household help because of distance or practicality, you can show support for families of children with special needs in so many other positive ways:

• Become a special needs advocate and raise awareness in the community about the child’s condition and the importance of inclusivity and accessibility for children with disabilities. 
• Take advantage of teachable moments among your friends or others who may not know about the special needs child in your extended family and help to educate them. 
• Gather community support by coordinating with local organizations to participate in fundraising walks, runs, bake sales or other events. 
• Help create a support network of friends, extended family, and professionals who can offer resources and assistance. 

Parenting a special needs child can be a full-time job. Offer to help the family connect with others, build a network, secure services or find the professional assistance they need if they can’t find the time or resources themselves. 

6. Encourage Self-Care and Professional Support for Parents

A parent can get overwhelmed and suffer caregiver burnout if they don’t get a break from their responsibilities to engage in relaxation, exercise, and other types of self-care. 

Encourage the special needs parents in your family to take time for their own health and well-being. Offer to babysit so they can go to an exercise class or hair appointment. Remind them to get their own medical needs and appointments taken care of. 

If you’re watching parents struggle with stress or their relationship or relationships with other family members, suggest counseling or support groups for families in similar situations. Offer to help them connect with a therapist, support group, or parent organization. 

7. Be Patient and Flexible

Communicating your understanding that their needs may change, that they may need to cancel plans at short notice, or that they may not be able to make certain events or occasions will go a long way to help special needs parents feel supported. 

Staying flexible, making space for change, and being patient all demonstrate your support for a family with a special needs child and show that you recognize their challenges. 

Continuing to invite the family to extended family events and staying engaged with them over time can also mean a lot. Special needs families often experience social isolation and strained social relationships, so maintaining contact is important and meaningful.

Showing your continued and steadfast support for the long haul can mean a great deal to a family parenting a child with autism, cerebral palsy, or other mental or physical disabilities.    

References

1. Extended Support Network. Dup15q Alliance. (n.d.). https://dup15q.org/family-support/extended-support-network
2. Support from extended family. LDExplained. (n.d.). https://www.ldexplained.org/social-inclusion/social-emotional-well-being-at-home/support-from-extended-family/#:~:text=To%20gain%20support%20from%20extended,related%20to%20your%20child’s%20condition.