It shouldn't have to be that way
Why is it when there are special needs in the family, it can feel like the world is irritated by you? It isn’t all the time, but enough that the accompanying feeling is all too familiar when those moments arise. It’s as if a person’s patience meter goes from normal range to very low when they’re met by a question or request from a special needs parent.
Take, for example, a phone call I had just yesterday. The front desk person with whom I was talking seemed pleasant and friendly when I mentioned that I needed to order some supplements. As we spoke, I expressed interest in ordering a supplement that my son had not yet taken.
The practitioner recently suggested this supplement for him, and I figured I’d simply ask about the ingredients over the phone. After all, the front desk is the place to order supplements, and we’ve done this a dozen times.
Why ask about ingredients? For one thing, I need to be aware of allergenic ingredients. Two, if there is overlap in, say, a vitamin he’s already taking, I need to adjust all doses appropriately. Three, I’m hyper vigilant about contraindications. When the medication and supplementation schedule for any person is changed, it’s always wise to check everything for cross reactivity.
There was a hesitation over the phone when I asked about the ingredients. “I guess I can find out for you,” was the irked reply. I was abruptly put on hold.
Upon returning with the bottle in hand, the woman read the ingredients. However, after the second one, she audibly huffed and said she couldn’t pronounce the rest of the words. At that point, I was not sure I even wanted the supplement.
I shifted gears. “Does it contain any milk…gluten…any shell-” The exasperated “no” came before I could finish my sentence.
“I’m looking at the note,” she said with uncalled-for vexation. “If it’s on there, it’s recommended for him.”
“Well,” I added with as much neutrality as I could muster, “I need to be careful about ingredients, and also about taste, texture, smell…my son won’t take anything that is thick, or clumpy, or smells odd to him.” (Does anyone like thick, clumpy, smelly stuff?)
Apparently this explanation caused the woman even more displeasure. She repeated that the supplement was listed on the note and asked if I looked at the note.
“I have the note in front of me. Yes. It doesn’t list ingredients or whether it’s a capsule, a tablet, or a liquid.” I was tapping my pen like a drumstick on the countertop.
“So, it has the ingredients there,” she barked.
“Uh, no, it doesn’t. What follows is just a list of foods containing starch…” Here I was, feeling that my question somehow gave the front desk person a major headache, when all I wanted to do was make sure my son wouldn’t vomit if given this supplement.
But this is how it goes sometimes when there are “extra” needs in a family and questions need to be asked. Thankfully, there are many people in this world who jump at the chance to help a special needs family. I’ve encountered wonderfully enthusiastic folks who don’t mind being asked something out of the norm, and they are willing to cheerfully assist. Such people are golden.
There are some who will be put out by a question and balk at any unconventional request. Believe me, in the special needs arena, there can be lots of unconventional requests! I’ve seen the expressions of dismay or annoyance. I hear the terse tone in the voice. I pick up on the resentment in their body language.
We are a family with some complicated needs. There are thousands of us out there. I’ve never been one to withdraw from participating in the world due to those needs. No one should ever have to.
But sometimes, some families do withdraw, and it is due, in part, I think, to the surly reception they have gotten as a family with some outstanding needs. Feeling like a nuisance, they retreat from gatherings and other public events.
Radio talk show host, Pat Walsh, once criticized the creation of sensory stations at public places such as zoos and concert halls. His thinking, as he stated, was that if a person needed a sensory break in a quiet zone while at an event, they shouldn't go to the event.
Again, not everyone out there subscribes to such a belief. Thank goodness. Yet, I’d bet that the majority of special needs families have come across such attitudes personally at least once in their lives.
Whether it's asking a server to please leave the cheese (food allergy) off the burger and remove the (slimy) grilled onions, or requesting a different table due to the strobe effect (seizure risk) from the ceiling fan, a special need sometimes irks people.
Truthfully, I much prefer the direct, sincere reply (if a question can’t be answered or an accommodation cannot be made) over the caustic “I’ll do it for you while I show you how annoying you are” response.
And it's certainly not that concerns raised by a special needs parent are over the top or out of line; said with kindness and respect, a call for some help is usually simply about supporting the person with special needs in a new environment.
Usually, there’s a rational reason for a denial. In this day and age, however, it seems that many requests made for the individual with special needs can absolutely be arranged. It never hurts to ask. I took my son to five different dentists once, only to find each one unwilling to work with my son’s needs; when the sixth one didn’t bat an eye, and included him in the conversation, we chose her.
I didn’t order the supplement yesterday mainly because I could not verify the ingredients or the texture and potential odor. But also, the snippy attitude did indeed dissuade me. I have the choice to take my money elsewhere.
Special needs families always have a choice. If or when someone you encounter reacts to your questions, requests, or needs with abrasiveness, you don’t have to take it. You and your family members don’t deserve eye-rolling or dismissal. You and your child deserve to be valued and included.
“Know your value, & accept nothing but the best.” Lailah Gifty Akita
Readers: Feel free to share an experience you’ve had with either gruff or golden people.