“Hi Mrs. Radigan. Is Lizzy toilet trained? Do you need a cup for her to leave a sample for her physical this morning?”
My expression reflexively said, “Of course she’s toilet trained, she’s 15 and not only is this the same practice that’s been taking care of her since she was born, you personally have known her this whole time.” But I remained silent despite my anger, smiled, and said, “Yes, she has been since she was three. Thankfully.”
“Oh, of course she is. Sorry. You are really a saint. ”
Flashing my best saintly smile, I grabbed the cup and led my daughter, who’s now 5 inches taller than me, to the bathroom so she could prove her ability to pee in the cup. We finished in the bathroom and left the cup on the shelf for the lab.
We were seated in the waiting room for only about a minute when a face that we have never seen before appeared, called her name, and led us to the exam room.
The physician’s assistant was a very attractive young woman. In a professional voice, she asked me if I could get my daughter in position to do the eye exam.
Doing my best impersonation of the “Cool Special Needs Mom” I try to show to the outside world, I said, “OK. Come on Lizzy, let’s do the eye chart.”
“She needs to cover her left eye.”
“OK. Lizzy, let’s cover your left eye. That’s it. Good.”
“Have her start reading the first line on the chart, where my finger is.”
“OK. You can talk to Lizzy, it’s fine. She doesn’t bite. Do you bite Lizzy?” All three of us laughed a bit. I turned to Lizzy, “Honey, can you tell me the letter she is pointing to.”
The three of us continued this way, the assistant asking me questions to ask Lizzy and me repeating the questions for my daughter, all the way through the eye and hearing exams.
I searched my well worn bag of tricks, the ones I use when I’m trying to educate people about my daughter. I asked the woman her name.
“Maria.”
“Lizzy, say hi to Maria.”
Lizzy looked up, smiled and said, “Hi Maria.”
With that Maria smiled and said hi back to Lizzy. I was thinking that maybe I was getting through to the young assistant, when she guided us to the examination room and handed me a gown for Lizzy to wear and left saying she would be back in a moment .
When Maria came back she continued to ask me questions about Lizzy, and I continued to try to get Lizzy into the conversation. I was having very little success with both members of my audience, and I think we were all glad when Maria completed her tasks and told us to wait for the doctor.
Now, don’t get me wrong, I don’t think this woman was trying to be hurtful. She was just doing her job. And for all I know, she handles all patients this way. Plus, I admit, Lizzy is not always an easy customer. But I’m reaching my breaking point, and watching my daughter being treated like someone less than human didn’t help me that day.
It’s been a tough year for Lizzy. Despite the developmental delays that cause her to behave more like a young child of 3 or 4 than the five-foot-eight teenager that she is, my daughter also suffers from Bipolar disorder.
Whether this is the result of her other problems, we will probably never know. But it’s this illness that causes the most havoc on our sweet girl.
This year Lizzy has been having more and more manic episodes. She’s been shredding her dresses, taking apart her shoes, having nightmares about monsters, and remaining so frightened of the monsters that she can’t sleep at night. She also has been emptying out bottles of shampoo faster than we can buy them. I won’t mention what she does to our deodorants but suffice it say we have the nicest smelling bathroom grout in the neighborhood.
We have exhausted every hiding place in our house for the shampoo and deodorant and have been storing them in my husband’s car.
When we ask her why she is doing this, she tells us she doesn’t know. I have cut bags of fabric for her to shred. When she started “redecorating” her school bus by ripping her seat, I started my mornings covering shoe boxes with duct tape for her to pick at instead.
We have gone through seven dresses, five pairs of leggings, three pairs of shoes, countless bottles of shampoo, and innumerable sticks of deodorant. She has gone days at a time with little or no sleep, and we have had to change and adjust her meds several times.
I’m tired and stressed. And I want someone to help my daughter.
If I can’t have that right now, I at least want the professionals who come in contact with Lizzy to treat her like a person.
When I encounter someone, like the physician’s assistant at my daughter’s physical, who can’t recognize the beautiful girl hiding behind all the disabilities, it’s a knife through my heart. It also drives home that sinking feeling that I’m the only one who can protect her in a world that will never quite understand her, give her the respect, and treat her with the dignity all of us have a right to expect.
I also have to remember that at the end of the day, Lizzy is just a young girl who’s trying to find her place in a confusing world. Her disabilities make her personal struggle harder than what most of us will ever encounter. At the end of the day, all I can do is be her guide and hope I’m doing it right and hope that she meets more people along the way who respect her than people who overlook her.
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Aw, Kathy I honestly have no words only a ton of love and support for you always, my sweet, dear friend <3
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Thank you so much my friend. xo
Great post Kathy! Very raw and truthful and sad that you have to deal with people on many levels!
Lizzy is very bright and is so sweet!!
She is lucky to have you!
Thanks mom! xo
Hi Kathy – thank you for writing such a poignant piece that will certainly hit home with many special needs families. Sending love!
Lisa
Thanks so much sweet friend. xoxo
I am so sorry you are going through such a rough patch. Lizzy sounds like a lovely girl who just needs a little guidance. I hope you find the help she needs and know that she is SO LUCKY to have you.
Thanks Kristen. xo She is lovely, but her issues are significant, sometimes I want to forget that. Unfortunately this year I really haven’t been able too! Lol! xo
This is heartbreaking, Kathy. But you expressed this so beautifully like always. Having the care we need is one thing, and receiving that with the humanity and sensitivity is another, and truly makes the difference. I send you hugs, my friend. And I pray for a stronger support system for you. You are amazing. xoxo
I know Joy. I was really surprised. I might have not been as bothered by it if Lizzy had been doing better, but it all seemed too much that day. xo
As others have said, this is beautiful. Hope it helped you in some small way to share it with us.
Thanks sweet friend. xo
Kathy, well said. I’ve experienced this too. It hurts when people do not presume competence with our kids.
Thank you Liane. It is infuriating. I was just so surprised that it was happening her, in a practice that has known her her whole life. I guess now that she is 15 and is so tall and looks grown up people just makes assumptions. I really didn’t feel like being nice! Lol! xo
You are such a wonderful mom, Kathy.
Thanks Amy! xo
Thank you so much for writing this! People refusing to communicate directly with my daughter played into her developing selective mutism. She is 16 and I always try to jokingly turn it around on the health care professional when they infantalize her. It’s a hard task to build up self esteem at home and convince her that her existence matters just to have it wiped out by someone asking me if she can talk, “peeper” in a cup, walk…My daughter’s life is hard and the fact that she maintains such grace makes it that much harder to accept what she has to face daily. Yeah, there are life lessons and such you learn when your child has special needs, but I’d give all of them up in a heartbeat for her to be appreciated and acknowledged as an individual rather than a disability. It’s been 16 years, and I still can’t get over the unfairness of it all.
Thank you Elizabeth! I have to be honest this was the first time I really felt like this at her doctor’s. And her doctor was great with her, but I was really surprised at how she was treated this time. Thanks again, nice to know I’m not alone. Sending love to you and your daughter. xo
I have no words. I’m so sorry this happens. I wish everyone could see her for the bright spark she is.
As a retired teacher of students with cognitive deficits, I can only admire your ability and willingness to be your daughter’s advocate. So many of the parents of my students weren’t able to do that for them. You are doing a great job of raising a teen with some difficult twists thrown in to the mix that most of us never have to deal with. I think you handled the ignorant assistant with kid gloves. Keep up the good fight to have your lovely daughter treated with the same respect and dignity we all deserve to be treated with. I think that many people don’t know how to interact with someone with a disability and they choose to interact with the person they perceive to be “normal” to avoid revealing their deficit/discomfort. I have seen this behavior towards people in wheelchairs, with seeing-eye dogs, etc. and it frustrates me no end! Keep on educating people like Marie and maybe one day Lizzy will have one less hurdle to overcome.
Thank you. I wish I had been more direct with her. I think my own stress over Lizzy’s issues prevented me from doing a better job. I think I also need to let Lizzy do more to plead her case. But I’m always learning! xo