Not sure how to support your loved one who has a child with special needs? You are not alone. Most people are unsure about how to respond to a family when they receive a potentially devastating diagnosis. You may not know what to say or how to help. You may feel the relationship growing distant and not know why. Although you may feel uncertain about what to do, there are many ways you can support a parent of a child with special needs, and let me tell you, we NEED your support….now more than ever.
1. Reach Out, Reach Out Again, and Again, and Again….
Our family schedules fill up quickly with school, work, therapy appointments, and doctor's appointments. Please show us some patience. Please know that we may be unavailable nine times out of ten….don’t take it personally. With everything we are juggling, it can be logistically challenging to see friends and family at times.
2. Consider Visiting at Our House
Once again, schedules can get a little wild when you have a child with special needs. Sometimes it requires significant planning to make a trip out of the house due to adaptive and medical equipment, or the fact that our children, depending on the needs, may struggle in a new or stimulating environment. For others, we may be working with limited time between appointments and other commitments. Help us out and make it easy on us. Offer to bring us a coffee or a tea and spend an hour at our place.
3. If We Must Meet You Elsewhere, Let Us Pick the Place
Consider letting us pick the activity. We know what activities are easiest for our child. Some of our kids are fantastic lunch buddies, whereas others love a great music class or story-time. Some love the pool and others thrive at the playground. Ask us what would work best for us, and within reason, let us choose the date and time.
As parents of children with special needs, we get a lot of advice. We also receive a fair amount of encouragement. These things are needed, but we don’t always want a pep-talk, nor do we want the oft-given and well-meaning generic phrases of, “you are such an amazing mother,” or “God only gives special children to special parents,” or “I don’t know how you do it. You are so strong.” Let me let you in on a little secret…..we are no stronger than you. We are no better parents than you. And although God may have given us these children, there are days where life is really hard. We simply do what has to be done. The greatest gift you can give to us is friendship and space where we can be heard. Hear what we have to say, validate us, and be there for us.
5. Ask Questions
Ask us how we are doing and ask about how our children are doing. If you don’t know much about my child’s diagnosis, ask me questions. Ask what our child is learning in therapy and how you and your family can support our child. Check in with us as parents and see how we are coping. Most of us want to share. You are our friend….we want you to know about what is going on in our lives.
6. Offer Help
If you see a need, offer to help. Offer to watch our child for us for the evening or to watch our typically developing children. Help with yard work, run an errand, or grab us a coffee. Even if we turn it down, the effort is noted. (I especially love those people that simply won’t take, ‘no,’ for an answer. You guys are the best – you see the need and you just do it).
7. Talk with Your Children
Take time to talk with your children about disabilities. Teach them how they might be a good friend and show kindness to those who are different from themselves. Check out my blog post 6 Tips For Talking With Your Child About Disabilities for more information about how you can have these types of discussions with your children.
8. Treat My Child as You Would Your Own
Be inclusive. Most kiddos with special needs enjoy the same activities as other children. Talk with them, hug them, read to them, sing to them, include them in activities.
9. Celebrate with Us
Some days are really difficult, but we invite you to celebrate the small things with us. Take pride in our children's accomplishments, love them for who they are, and show your love for them both in private and in public.
Nothing warms my heart more than someone raising awareness for my child’s rare disease. There are so many ways to advocate for children with rare diseases and disabilities and it can be as simple as sharing a blog post like this one. Sign petitions to your local congressmen to advocate for improved special education services. Volunteer for a local organization. Start a fundraiser – don’t be scared – turn your everyday activities into opportunities to spread awareness by running a 5k and raising money for the family or charity of your choosing. At your birthday, in lieu of gifts, ask for donations. Throw a cornhole tournament in your backyard. There are so many ways you, as an individual, can help draw attention to the needs of our community and improve the quality of life for our kiddos.
The fact that you have clicked on this blog post indicates you want to know how you can better support your loved one. Thank you. We, as a community, are so grateful for your care and interest in our children. Your friendship means more than you will ever know, and your support is often like the wheels on our bus, you hold us up and keep us moving forward.