Four Things NOT to Say to a Special Needs Parent

The holidays have come and gone once again and we (mostly) survived another year. Now that this Mom has had time to take a breath and recoup, I’d like to share some things we encountered multiple times this holiday season, but that really apply all year long. Before I go into this, I need one thing to be known: I know all of these things were coming from the heart. I know the many different people who said these things love our kid and our family and just want to help. None of these were ever taken offensively or as an insult. But after hearing the same four things over and over again in a three-week span, I feel the need to speak up.

Four things not to say to a special needs parent:

“What sensory toys can I get him? I want to get him a gift that will help him.”

No matter the occasion, please get him whatever gift you would get for a kid with his interests. He has so many sensory items at school and therapies that he is likely not to even touch them at home. There is no greater let down than watching all his siblings/cousins/friends open some really cool toy from their wish list and then for him to open a wiggle seat. Remember he is not his diagnosis. He is a child. He likes toys and playing, just like other children. Every single part of his life is centered around therapies, supplements, diets, and new techniques. Let this be a time when he can just be a kid opening a present. Because, after all, that’s what he is.

“He seems to be getting better.”

I think, what you meant to say was, “I can see he is making progress since last the last time I saw him”. His diagnosis is a lifetime thing. He cannot ‘get better,’ this is not the flu. But yes, he is doing well tolerating crowds, letting people in his personal space more, and making steady eye contact. Thank you so much for noticing. He has been working hard five days a week in school to make these small steps happen. Every day he works harder than you and I could ever imagine to make another inch of progress. When you make this comment, it sounds as if one day you will be able to say, “He is all better!” He won’t ever be better. He will be more independent, more self-regulated and less defensive. But he will never be better.

“It is so good he knows what he needs.”

Yes, you are right, it absolutely is. But when you see him running to empty staircases, or finding a bed to hide in, or trying to get outside… Remember what you just said. It is what he needs. It is not cute, or notable. Please respect his needs and let him be. I beg you not to crowd him and make comments to everyone that passes, “Look, he knows exactly what he needs right now! How great is that!” And if he is trying to get outside, please stop him. I know it may seem that if he goes out in the snow with no shoes on he will quickly come back inside – but he wont. He will just keep walking until his body decides to stop – and we never know when his body will decide to stop. Since it isn’t kosher to tell family at a holiday gathering about the times he has almost gotten hit by a car, I will just ask, once again, please stop him. However, if he is inside trying to get away, let him be. He has worked really hard with an occupational therapist for years to get to this point. Respect his space.

“Oh, I know/remember what it is like when…”

Stop. Just please, stop. I truly know you are trying to relate—really. And with my other two kiddos, please, give me all the wisdom and advice you have, Lord knows I need it! But no, I promise you, you do not know what it is like. The meltdown you just witnessed will likely last us all the way to early morning hours. It may even effect our next day. There is a possibility someone will get hurt, most likely himself. Those other two kids will once again not get the attention they deserve and need for the rest of the night. This is not a fit. It is not because he didn’t get his way. And honestly, most the time I cannot even tell you what it is about. Is he over stimulated? Is he on sensory overload? Did something not go how he planned it? Is there something he cannot seem to communicate? Please understand, this meltdown is not just because we are off routine with the holidays or a missed naptime. These are daily. They are not temper tantrums or fits, and they are day altering. So when we pick up and leave without any notice, do not expect me to apologize for our quick disappearance. This is what we have to do to begin damage control.

Again, I know all of these statements, made by different sides of the family, at different times, in different places were all meant with good intention. Next year, instead of commenting, ask us about his progress and all the things he has conquered this year. Ask us about the struggles too. All we want is to tell you about our amazing son; him as a whole person. Because, in all reality, the only comment I want to hear is how my wine glass needs refilled.

Special thank you to today’s guest blogger: Steffanie Enderle

I am a mom of three wonderfully crazy and amazing children and a wife to an incredible woman. When I am not being a personal chauffeur to preschool, therapies, gymnastics classes, and play date; I work part time with individuals who have multiple disabilities in an outstanding care facility. My hobbies are eating icecream and taking naps – neither of which I ever get to do alone!