Helping providers to better understand what families of children with autism live with is one of the best aspects of my job at Seattle Children’s. Over the years I’ve had the opportunity to talk with many teams in a number of departments at Children’s and the University of Washington.
I’m often asked about our best and worst experiences in my daughter’s many years with a number of people, including physicians, dentists, nurses and nurse-practitioners, phlebotomists, teachers and aides, ABA consultants and techs, and in-home caregivers. In the past twenty years, she has likely had close to 100! In fact, one day my husband and I managed to rattle off the names of every single in-home caregiver she has had.
In retrospect, many of the following can be viewed with a sense of humor but at the time weren’t so funny. I offer them in the spirit of helping others to “get it” as best they can.
Here’s some of the advice I’ve received:
A caregiver told me that she wasn’t yet talking because we weren’t speaking to her in her native language: Spanish. She asked if she could speak to her in Spanish. I said sure. She’s still not talking. Maybe it’s French.
A physician once told me that she was sure her emotional upset was “just behavioral” when she couldn’t figure out any medical reason. A visit the next day to the emergency room proved she indeed had a medical reason for the upset. This seems to be a fairly common response parents hear.
A not-funny-at-all memory was the time she came home from school with her new shoes duct-taped on her feet. She has some foot deformities making shoes very uncomfortable and she used to take them off a lot at school. This bright idea ruined the one Nordstrom pair of shoes I splurged on and made it even harder for her to walk.
A caregiver told me that her behavior would get better if we rearranged her bedroom furniture. Apparently, the feng shui was off.
A caregiver insisted on making her bed with the pillow at the head of the bed instead of the foot of the bed where she had slept for years. She told me it would give her the message she was only to sleep with her head at the head of the bed. I don’t think she got the memo though because she still sleeps this way. My response to the caregiver was that given that she did not sleep well or much, it was fine by me if she slept upside down – as long as she slept.
Here’s one many parents of kids with autism hear: we expect too much, we’re too demanding. This typically occurs when someone wants to lump all people with disabilities into one homogenous group and assume their needs are the same or as an excuse when service standards are lacking.
A general education PE teacher in junior high gave her a poor mark for “citizenship” in class because she “doesn’t interact with other students”. I asked if she was aware that my nonverbal child has autism thus social-communication difficulties. She told me she didn’t take that into consideration and that she treated all her students the same. When I told her it was disappointing that she didn’t seem to understand my child at all, she told me “I don’t give grades to make parents feel good”.
A caregiver insisted that she wouldn’t notice if I added pureed squash to her mac and cheese. That was a funny one. I’m still laughing at that one.
Enough of the bad. Here’s some of the good
We’re fortunate to have former caregivers who keep in touch and visit her. I have some precious photos of her delight at seeing a familiar face.
I love the physician who always gets on eye-level with her and greets her first, even though she’s nonverbal and doesn’t understand a lot of what we’re saying.
I so appreciate the teachers and para-educators who share the positives with me, refraining from mentioning the insignificant small challenges that they should know by now I’m well aware of.
We have had some heroes in her dental care. They listened to me about what works and doesn’t and accommodated us so beautifully, making less stressful, by far the most difficult routine care we must do.
She hums when she’s happy. A happy memory for mom was when her provider asked her if it was a tune he knows. I let him know it was an original and we all smiled.
Another challenging thing we do is haircuts. With patience and poise, Miss Jodi works magic. She never says, “sit still” or “don’t move” or has said she can’t do it. No matter how unsettled she might be, we all take deep breaths and get the job done.
It means so much when providers ask how I’m doing and some even remember her brother and ask how he and dad are doing too.
I’m so grateful for all the clinics and staff who understand our routine when taking her for appointments where there’s always a wait to be roomed. A caregiver stays in the car with her while I check in. They let me know the anticipated wait time and when it’s her turn, I text the caregiver to bring her in. This has prevented many a meltdown and exposure to whatever is floating round the waiting room during flu season.
And to the many providers who have specifically chosen to work with those with autism, I offer my deepest gratitude. I know it isn’t easy work. There are times when a few words of compassion and encouragement from you has made all the difference in making it through the day with renewed hope that things can get better.
Do you have a memory of helpful or not-so-helpful advice you received about your child? Share it with us!