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5 Things I Want to Tell the World About My Daughter With Special Needs

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When I think about this life as caregiver for my daughter living with multiple disabilities, there are certain things I wish others understood. When I look back on her school years, all the fights (past, present and future) with insurance companies, interactions with the medical community and the world at large, I wish I could give them a guide for helping things have a good outcome. If I could do that, here are five things I would include.

1. School personnel: I wish you would’ve kept in mind that you had my daughter for approximately seven hours a day, five days a week and 11 months out of the year. I had her the other 17 hours a day, all weekend and every school break, including vacations. If I seemed uninvolved in her school day, it’s simply because I was fully involved in the rest of her day, and she needed to have some independence from me, and I from her.

If you judged me when she showed up at school with her fingernails needing to be trimmed or her coat needing to be washed, I wish you would’ve remembered that I had more than just her needs to take care of, and someone else needed my attention. Perhaps I was feeling unwell or just plain exhausted. It’s not that I was an uncaring mother; I am a human being doing my best.

2. Anyone on the other end of the phone: I would like you to realize that if I’m short with you, I’m likely not angry with you personally. As frustrating as your job is dealing with callers who are not kind, you can leave that job at the end of your shift and mine never ends. I’m likely frustrated with decisions made by someone else, and you are just the unlucky person who has to screen my call and maybe deliver the unwelcome news. You may be my fifth call of the day that’s not getting me any answers to a problem that needs to be remedied. If you have called me and I am rude, please understand this.

3. Doctors and their staff: When I contact you about my daughter, please try to keep in mind that I’m not well-versed in medical terms. If you’re not new to caring for her, you know me and know I don’t bother you with nonsense. I don’t expect you to perform miracles. Just take an educated guess at how best to treat whatever the problem is and guide me along the way. I will do my best, but I reserve the right to veto a treatment plan that just doesn’t seem right or necessary. Remember, we’re not trying to “fix” her, just keep her as healthy and comfortable as possible.

4. Insurance companies: I wish you’d see our daughter not as a claim number, but as a person who needs your help. While you’re denying treatment or equipment as you quibble over codes submitted to you by a provider, my daughter is paying the price by dealing with an illness, condition or outgrown equipment. You will go home at night and be comfortable. She will continue to be uncomfortable and at risk until you return to the “claim” and make a decision. Do you like to be kept waiting when you’re uncomfortable or ill?

5. The rest of our world: Please don’t feel sorry for our daughter or us. She’s not a problem, but the logistics of her care sometimes are. If she’s in your way, a simple “excuse me, please” will get my attention and I will move her. You don’t need to try to get around her wheelchair by climbing over it and kicking it in the process. Her wheelchair is like your legs and feet. Please bear in mind when you’re at an event such as a parade, she can’t see over you or through your behind, so don’t stand in front of her. Don’t forget that accidents and medical issues happen every day that can result in disability for anyone — you, your child, another loved one — so please have compassion for those already living this journey.

Lastly, even though my daughter may evoke feelings of sadness in you, she is happy.  She knows only love, and we should all be so fortunate.

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Originally published: August 15, 2015
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