You know those times where you look back on a situation and think, ‘wow…. I went about that all wrong!’? Fairly recently I had one of these and it forced me to look back on life with my special needs daughter and realize that I really messed up. Not one big huge mistake but rather a series of events that, added together, made a big old mess.
Obviously I don’t think I am alone in these mistakes so allow me to share my story in the hopes that you don’t have to do all the back-pedaling I am doing.
After six years of being a special needs family my husband and I decided to go on a ‘second honeymoon’ trip out of the country. The challenge? We had five young children that we needed to find care for and one of them has special needs! We had aligned a close sister to take care of my special needs daughter, farmed out the other children and we thought we were all settled but then the whispers started.
“They need to hire a nurse!”
“How can she possibly care for Dylan’s needs!?”
“Don’t they have to do medical procedures?”
It was awkward.
Yes, we do have to do a few things with Dylan that parents of typical children don’t have to do but we have been doing it for years, it’s second nature now and it’s easy! Her cares only take a few minutes three or four times a day. To hire a nurse to come over four times a day (at minimum, full time was implied) seemed a bit of over-kill. I am not gonna lie, it was kind of ugly…
But whose fault was it that they were given this impression? Mine. On one hand it really helped me realize who our true friends are, but on the other… it helped me realize I wasn’t letting anyone else, even family, “in”.
You see, and this is where I think a lot of us go wrong, I had been struggling for six years to make it look like our life was no different, no more difficult than anyone else’s. As a result, the process for Dylan’s cares were somewhat elusive! Not exactly what I was going for, in fact, it was the opposite. Had I involved them in her cares from the beginning (like I had the sister who was going to watch her) none of this awkwardness, whispering and confusion would have happened.
So what am I trying to do differently? One word, transparency.
Before we left I wrote everything down. I wrote down Dylan’s schedule, I wrote specific instructions on how to feed her, I was detailed with her medications, it’s on paper! (Kind of, it’s all online…) There are pictures people! Each beep that her feeding pump makes has an explanation, there, in the file.
We have been better (though not great…) about leaving Dylan with other trusted people for short amounts of time. I know that I have someone that I can rely on for the longer times, but starting to have other people feel confident that they can also care for her is one of my goals. One I am not great at because I would rather stay home than train someone!
I have started to do Dylan’s cares in front of other people instead of taking her into a back room that offers more privacy. When I have family over I bring them in and offer to show them what I am doing “In case something happens to us.” I have actually seen a person or two get visibly uncomfortable at the idea of using a catheter to empty her bladder (hey, special needs parenting ain’t always pretty…) but it’s all good. We were uncomfortable too at first!
There you have it, my big fat mistake. It’s going to take me a long time to get out of a mess that was six years in the making. I am looking for more tips if you have any advice. Have you made a similar mistake?
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