With all that's been going on, I'm surprised my head is still attached. In just over a week and a half, we've gone from "Wyatt needs ear surgery" to "Wyatt's having his heart surgery NOW". I guess there is some testimonial in there about parental fortitude or something, but to be honest, my head is too busy spinning to bother looking for it. Instead, I'll rub my whiplash-sore neck and start planning our lives for the next little bit.
I don't know about your work week, but mine often comes in themes or flavours. We'll get a whole lot of one diagnosis in for a bit and then won't see it again for six months. One of the topics that came up in my eerily-connected "am-I-sure-I-am-not-having-
ideas-of-reference?" week was the notion of complex care in direct relation to special needs. Any parent or adult with special needs is well aware of all of this and balancing what seems like a takeout menu of doctors gets really old, fast. But, to the uninitiated, it can seem overwhelming at first.
Last month, I ran across
this story, where a Mom mapped out her son's care network. Using a neural type map, she drew a series of ovals for the various supports she utilizes to manage her son's
Coffin-Lowry Syndrome. It is beautiful in it's complexity and it resonated a bit with me as it is often quite difficult to explain to people who all is involved in Wyatt's circle of care. Or, they simply assume that I whisk him down to a specialized clinic every so often for a once-over. Nope. Not how it works.
This is Ms. Lind's
original neural map for her son Gabriel:
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| Gabe's Circle of Care. There are 102 items on this network including 3 barriers (for one child). |
Each of the ovals denotes a department, agency or subject that is to be addressed. The doors represent barriers to care. It is clean, it is neat and it puts into context how complex the life of a person with complex needs can be.
That got me thinking a little more. One of the more popular arguments put forth when recieving a diagnosis of Down syndrome is that it is "too much" work/effort/money. I can't speak to the latter as that will vary from country to country. I can however talk about the first two. Just looking at the above picture, I thought that my map would be nowhere near that complex. Just for giggles, I borrowed my eldest son's Crayola markers and a sketch pad and sat down to figure out how Team Logan fared. I used the same headers as Ms. Lind and as I went along, I realized that I was having drawing envy as mine was no where near as big (even with my giant printing-with-fat-markers-writing). I added in
everyone's needs, just to fluff it up a bit. This is what I came up with:
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| Team Logan's Circle of Care. There are 78 items including 7 barriers (for a family of 5). |
I came up with a map that had 78 points of interest for my entire family and 7 barriers. I even added doctors I haven't seen in a while, just to pad it out a bit more. Most of the barriers that we currently face involve other people and our support circles. The only barrier to Wyatt's
health care that I could see was the distance and the time involved with dealing with Sick Kids (ie: driving, gas, parking, food). Also, there will be additions to this network in time: for example, the school bubble will flesh out a bit with any needs that any of the kids may have in the future and I hope to get Quinn into music lessons soon.
Even with my gigantic printing, you can see there is a lot less here. Also, I hesitated to put Wyatt at the centre of our family because he is in fact, not; he's one of the kids. I put him there simply for consistency. I also added a few more supports, including this blog and some groups/pages I belong to (and a few more that I've helped create).
Once this map was finished, I started thinking about other families. With her permission, I drew up my BFF's family, representing a family of four, two adults and two kids. She is notably a "dance mom" and her one child has more needs than the other. Therefore I chose "Girl" to represent the centre of the family.
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| Team BFF, an active family of four without other special needs. There are 61 items, including 5 barriers. |
I'm sure there are more things that I have forgotten, but these will have to do for now. Their barriers are very similar to ours; there are limited government programs that they qualify for due to income level and supports are impacted by distance and time. Looking at it one way, Team Logan a "family with special needs" has an average of 16 items per person. Team BFF, a healthy, competitive-sporty-type family has an average of 15 items per person.
Not a lot of difference, frankly.
Although I make it sound like our life is the busiest one ever, it isn't. My BFF has two typical children and she spends her life in the car. As it turns out, at least for our two families, having a child with Down syndrome isn't in itself any more complex than having a child in competitive dance. In fact it's currently astronomically cheaper (and involves a lot less glitter).
I guess my point is this: yes, my life is a little busier due to Wyatt's extra chromosome. However, to say that it is in any way unmanageable or intangible due to this detail would be completely incorrect. This too would fall under the "
I don't know how you do it" header that I've already mentioned. He has a few more doctors, therapies and appointments than other kids his age, I suppose... but no more than the rest of us.
As I plan out the next few weeks and mobilize my support system for Wyatt's upcoming surgery, I'll leave you with a challenge. Map out your family, your doctors, your specialists, your kids activities, coaches, teachers and support system. As parents we juggle a lot, most of it unconsciously. Sometimes it's good to regroup and take stock of all that this parent job involves, whether "typical" or "special needs". You might be surprised at the results.
