First, let me say thank you for making it all the way through this thing! I hope this series has changed your perspective and left you with some powerful lessons and takeaways.
So, before you go, I do want to selfishly share one small “How to Support a Family living with a PDA/Autism/Special Needs child” segment now, while I still have your attention.
Educate yourself. You cannot—I repeat—you cannot fully support a family that has a child with any special need if you don’t know anything about it. I honestly feel that to be one of my closest friends and share this life with me and my family, you have to educate yourself on Isla’s diagnoses or at least know our story.
Otherwise, there’s no way to fully understand and support me, my husband, my children, our lives or our decisions.
Be respectful. I don’t care if you are young or old, formally educated or not, a doctor or my BFF, the most renowned special education expert or a rookie parent. Please respect my knowledge about PDA/autism in my little girl. Nobody knows her like I do, and it has taken years of researching, studying, reading, trial and error, doctor visits, exams, therapy, ARDs, prayer, and hands-on experience for me to become an Isla expert. I can only imagine this holds true for many other families. It is demeaning and downright degrading when an educator/doctor/therapist, etc. who does not know my daughter at all takes one look and presumes to understand her needs better than I do. This insinuates I am wrong, uninformed, selfish, or clueless. Not cool. And there’s nothing more annoying than when people put my little girl in a box based on their one, fictional experience with autism. “Isla is autistic? Gosh I would never have guessed. She seems so high functioning. Have you seen The Good Doctor? Isla is going to be a doctor, I just know it.” Oh, people, this is why a single story is so problematic.
Don’t compare us. It is super important not to compare one family’s struggles with another’s. I never know how to respond when someone says, “Well, at least Isla doesn’t have cancer.” Really? I mean really?
First of all I have seen cancer ravage through my family, and I cannot even begin to fathom the fear, desperation, loss, sadness, depression, helplessness, and destruction that a family feels when one of their children has cancer. But still, don’t you see the danger in this comparison? How is it helpful to trivialize and minimize someone’s struggles, hardships, and challenges this way?
Yes, you are right. Isla doesn’t have cancer, and I praise God every day for healthy children. But that doesn’t mean we don’t matter, or that we’re wrong for feeling sad and scared. Trust me. I am sure that most families with special needs children are acutely aware of how much worse it could be. In fact, that reality may help them cope. But please, please don’t make us feel like ungrateful complainers.
Love on these families. Never underestimate the needs of a family living with a special needs child. They probably do a very good job hiding the fact that their day-to-day life is extremely challenging, and it’s likely they desperately need friends and family who are willing to get gritty with them.
Help them troubleshoot.
Help them be creative.
Help give them a break when they need one.
I think I can speak for most parents with special needs children when I say that we don’t want your pity.
We want your kindness.
We don’t need your sad puppy dog eyes or your evil eyes or your rolling eyes when our children are not behaving as you expect.
We need your encouragement.
We don’t need negativity or fake friends.
We need friends who are genuine and lift us up.
So the next time you see or visit a friend or family member who has a child with special needs or see a “special” parent struggling in a store or restaurant, show them compassion. Give them a smile, hug them, and tell them they are doing a great job. If you really have time, show them patience, and allow them to share their story.
Everyone has one.
And if you are a true go-getter, take time to teach your children the same tolerance and compassion for everyone they meet.
