Supporting Parents of Special Needs Children

Supporting children AAMBParenting is hard – really hard. When our survivor twin was born at 24 weeks gestation, my husband and I found ourselves thrust into the world of prematurity. I will always be a parent of a preemie. Prematurity forever changed our lives.

As our son gets older, I can relate to special needs parents, parents of medically complex children, and to preemie parents. Our son has multiple special needs as a result of his extreme prematurity. His special needs are both medical and cognitive.

Special needs parents have a bond that is unique. They understand the struggles that our children face on a daily basis, and just important a milestone is – no matter how large or small.

All special needs parents have been told at some point along their journey that there is something their child won’t be able to do. Watching our children achieve things we never thought possible is one of the greatest joys in life.

What I found on this journey, is that others often don’t know what to say or do. They are afraid to ask questions.  Afraid of insulting, or saying the wrong thing. And, they are afraid of the silence that happens in a conversation.

Special needs and medically complex parents – like all parents – want to know they are supported and be encouraged by those they love. Here are some tips for supporting special needs parents you may know:

Send a text or email of encouragement. A simple text or email goes a long way. It doesn’t have to be long.  “Hope (your son) is doing well!” “Thinking about you today!” “I’m running errands today. Anything you need?” They want to feel remembered. Don’t be offended if they don’t respond immediately or at all. I promise – they got your text and are thrilled you thought of them.

Don’t be afraid to ask questions about their child. Parents would rather you ask questions than avoid the subject or ask someone else (or even worse, just stare). Special needs parents find joy in talking about their children – just like any parent does. My son has a feeding tube. I remember being so excited when someone asked about it and how it works instead of just staring. My son also has bilateral cochlear implants. I love when people ask me how they work rather than staring at his ears. Special needs and medically complex parents love educating others about their child.

If you know the child/family has an appointment or meeting, let them know you are thinking of them. Follow up to see how the appointment went. Special needs and medically complex parenting is marked with countless doctor appointments, phone calls, and meetings at school. Special needs parents want nothing more than to be supported during these appointments and meetings. They can be stressful and time-consuming. Send a text or email of encouragement. Follow up after the appointment to see if it went well. If the parent doesn’t respond for several days or doesn’t share much about the meeting, don’t be upset. Know they appreciate you thinking of them.

If your sentence starts with, “My cousin’s dad’s mother’s uncle’s brother’s mother had…” and doesn’t have anything to do with anything, don’t say it just to make conversation. Our son has a rare condition called Eosinophilic Esophagitis (EoE) .  I had never heard of it until he was diagnosed. I’ve never met anyone who has this disease, and I had people start sentences similar to the one above, trying to compare to EoE even if it wasn’t similar. Once I had someone come up to me and say, “I know your son has Eosinophilic Esophagitis. My nephew does as well. What foods have been eliminated from his diet?” YES! Finally – someone directly related to the disease that knew exactly what our son goes through.

Prepare a meal or send a gift card if you know they have a trying time ahead or are in a trying time like a hospital stay. The smallest acts of kindness go a long way. If you know the family has a long day(s) of doctor appointments or meetings, send a gift card or a meal so they won’t have to worry about dinner. Our daughter was in the hospital recently. My dear friend showed up to her room with coffee, magazines, snacks, a smile and a hug. This absolutely made my day. When our son was in the middle of his 228 Neonatal ICU stay, we had friends who would bring dinner to our home or to the hospital, or they would eat with us in the hospital cafeteria. 

Offer to help clean their house, fold laundry, get their mail, do yard work, or walk their dog. Special needs parents and medically fragile parents are often struggling to keep their head above water. If you know their child is in the hospital, offer to help around their house. If you are mowing your yard and see theirs needs mowing, do it. Special needs parents often don’t want to ask for help. They don’t want to be a burden to anyone. I promise – if you ask what you can do to help, they will find something you can do.

Do not compare your typically developing child with their special needs child. For all that is right in the world, please do not compare your typically developing child to a special needs child. Our son was in the NICU and had been on the ventilator for weeks. A parent I know was complaining that her child had a runny nose. It was all I could do to listen and not go crazy. At that time, I would have given anything for my child to “just” have a runny nose. Special needs children may or may not develop as quickly as a typically developing child. Please, avoid the “parent competitions” that happen when many parents get together. Like whose child walked first, talked first, or ate first. Many special needs parents would give anything for their child to be able to do any of these things.

All parents need support on their parenting journey. What are ways you have supported friends with special needs or medically complex children?

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Laura Burgess Martin is the Director of Parent Communication and Engagement at Graham's Foundation - a non-profit organization that supports parents of premature infants. Before staying home with her children and working for Graham's Foundation, Laura spent five years teaching middle school chorus in metro Atlanta. Laura also maintains her personal blog, Joseph at Home, which chronicles their life raising their son, Joseph, a survivor twin who was born at 24 weeks gestation and has multiple special needs as a result of his extreme prematurity. Laura, her husband, Scott, and children, Joseph and Emily, reside in Cherokee County.


  1. I’m so glad that you wrote about this! I think it’s so important to know we can best support others in times of need – many people don’t know what to do. Great thoughts in a terrific article!

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