Tag Archives: alone

Vacation to Normal…

21 Oct

Alex in his hat….

Originally uploaded by CleverGirlBek

Our child and our life together as a family are not normal, average, or regular. It’s freaking hard people. I don’t want to hear about the sunny side. I don’t want to hear about how so and so’s kid was cured or how my kid looks normal or seems normal to you. I don’t want to hear how normal is boring. I crave boring. I love my child. But a day of boring. A day of regular. A day of normal, with Alex present and active, would be the most extravagant outrageous vacation we could ever imagine. Sure, we’d get to the end of the vacation and we’d probably say we were glad to be heading home, but we would have had fun in normal, regular, boring while we were there. We had a day of relative “normal” on Sunday…But it was a brief snapshot… I hope to see it again and more frequently, but of course it is the day to day that is important right now. I wouldn’t say it was totally normal, but we could see the progress over the past year. My son is 5. He went on his first motorized amusement ride on Sunday. He didn’t lose his shit or scream or yell or stand up or climb out while it was in motion. He didn’t even seem to notice it was moving and tilting. They had a bubble machine in the middle and he just stared at the bubbles and tried to catch them from his seat. Those bubbles weren’t there for the other kids who like the round and round and the wind and the tilt, they were there for my kid so he could handle the round and round and continue having a great day. I almost hugged the ride operator. But I would have had to explain…And I didn’t want to bring on the tears or they would have never stopped because I am just overwhelmed and tired…

This is a picture of him in his oktoberfest hat…We get him a new pin every year… The backpack has his weighted vest in it..He is sensitive about it lately- we are rapidly speeding past the age where special was good and it was ok, to him, to be different…He notices the differences now, and he isn’t happy about them…So the vest goes in the backpack where Alex thinks it’s ready if he needs it, meanwhile it helps him as the weight is still being applied… (it’s light, only around 2lbs)

After five years of being told or at least hinted to that we look too deep, overanalyze, and/or are paranoid people, it is nice to have the validation given by the objective test results. There is something going on. It’s not our fault, but it does not exist independent of us and it’s up to us to make a difference. Any difference.
A very dear friend once described life after a tragedy as “the new normal”….
I would love to apply that here but the reality is that the majority of this has been normal for so long that it can no longer be described as new. There are new parts. But this stuff isn’t a shock, it’s a relief in some ways, a jumping off point… It’s not like he was diagnosed with something like a tumor that we didn’t know was there but it has been hurting him…This wasn’t something that happened overnight…

I do wish that people (professionals and non-professionals) had not spat our observations out the way that they did. Even one person we trusted saying “if you are worried, here’s here you need to look” or “you know your child best” could have gotten Alex help much sooner. We have been reassured since his birth that “this is how kids act” or told we were paranoid. This has never served us well. This is our first time around. I feel like a jerk for trusting and confiding in professionals and non-professionals rather than just going with my gut. But going with my gut led me to those professionals (general pediatrician, etc) and they shot everything down with a “he looks fine to me”…. Not that his test results are black and white- oh no, not my kid…That would be too easy… But our concerns were valid, and they were signals, red flags, and they were largely ignored and belittled. This is the anger part for me. The last time I was in his peds office when he had a fever and was acting strange I explained to the ped who was handling urgent care for the office that Alex doesn’t climb things and he is ground bound and doesn’t even like climbing up on his bed, but other than the low grade fever the only other symptom he had was that he was climbing things- barstools, counters, bookshelves. She looked at me like my face had suddenly morphed into a pile of turds and said “You do know he is a 5 year old boy and that’s what 5 year old boys do.”

But not my 5 year old boy. It was odd behavior for my child.

I have had it up to my eyeballs with doctors seeing all children as the same and fearing helping a child. I also think if 5% of a parent’s intuition or concerns were actually heard and processed and considered, so many kids could be helped.

For now there is enough clarity to spin new threads of inquiry, of questioning.
There is not enough to thoroughly research but there is enough to investigate therapies for associated issues, general issues, so that we can begin helping our son in a more focused manner.
But there is not enough to buy a pile of books with specific names, but we can take them out at the library but I still feel like we are hiding, like without a definite diagnosis (and I understand there are benefits to not having a diagnosis, but those are starting to really dim for me these days) we can’t officially belong.
On the other hand, some very wise and generous women with kids who are, in many ways, like my own child, have welcomed me with grace and understanding and because they have been where I am today the conversations and emotion come like a tsunami. Our situation is unique, and in the grand scheme of things and just statistically in the world population, our experience is so very unique to the point of isolation. But with the kindness and openness of these warrior mamas, I finally feel like we are less of a freakshow and for the first time it feels like I might be able to talk to someone without being told what I am doing wrong or that I have to be strong and not cry. The details and diagnoses are very specific; the stories are universal. I used to cry after hearing or reading a show or article about a parent and their child, and that child’s challenges. I now cry out of relief because I know we are not alone.
I am finally finding the strength to speak up for my child. The anger and frustration of those who judge, both strangers and family, infuriates me. Part of me longs to educate, as I have had to do many times on my behalf.
But I’m exhausted. When I am in public or broken down enough that I collapse on the shoulder of my most critical family member, knowing that I will be criticized, that I need a formula to choose my words wisely but with strength. It is difficult with a screaming child, to explain to the stranger, that a spanking or a “good whooping” will not do a thing because this is a neurological issue. It’s not a bad thing, it’s not a good thing. Whatever this thing is it is a fact. I long for that fact.
I have decided that once we have a single word to describe the why that I will have to screenprint some cards with more information. The old man at the store who tells me his sons would have never gotten away with this sort of behavior will get a card. My mother, who when we first mentioned that Alex had a visit with a new neurologist, will get one when she responds that she notices a certain abnormal behavior but only in response to me and that if Alex spent an hour with her every week (instead of the professionals who help him) that he would be normal and cured. I wish I could slap them across the face. I know that wouldn’t solve anything. I know that would most definitely not be a positive example for Alex. But I want that ice water over the head, that smack across the face, that maybe they will learn to shut their mouths when they just don’t know. If that old man (for example…could be anyone, but the 70+ male crown tends to be the most blunt and rude) realized that there are unseen things in the world and they shouldn’t judge (although the thing about old dogs and new tricks comes to mind, I have been proven wrong once or twice), then maybe the next mama struggling at the store with her kid and his raw nerves and communication issues would not have to get all of the tears out in the car so her eyes won’t be blurry on the drive home. So maybe that mama could venture out for more than just milk and toilet paper without being judged and maybe solutions could be found in those outing than are not as visible in a controlled, home environment.
My parents constantly tell me that I am too sensitive. At the end of a long day, with many struggles, where not one simple activity is accomplished with ease, I don’t think anyone who cries because someone judges them in a most disrespectful and ignorant manner, is sensitive. I think they are human. For me it’s that reiteration that we don’t fit in. Now we are finding that we do fit in, just not in any actual, physical place with any consistency. But we now have the connection to others with similar quirks and traits and disorders, who even though they may be on different continents or thousands of miles away, help us feel accepted….
It also floors me that we are spending so much time one social skills and social stories, yet on some days I feel like Alex has more of a grasp on it then the “well meaning” adults we encounter.
So please, if you read this far, please give people the benefit of the doubt. There are many things which are unseen and many of us who have mountains of challenges, with more challenges piled on top of the first mountain’s worth. Instead of assuming you have the cure, the answer, or the key to our salvation please take a breath and ask if you were having trouble walking with a cane and balancing the milk and bread in the other arm- what would be helpful to you? A comment about how you walk too slow? No. Ask if you can help carry something for us. If you don’t want to help. Kindly zip it. If you see an exhausted mom with a screaming kid (who isn’t screaming “help” or “this is not my mom” but generally yelling and screaming and crying, please wave and say hello. His name is Alex and I am Bek. It’s nice to meet you.

(I swear I will go back to my regular blog entries soon…We are in the immersion phase of planning and implementing… I get ½ an hour in the afternoon when I just finally start to crack but I am still somewhat coherent… Hugs all around…)

The Return of The Fanny Pack

2 Jun

Wear It Florida.

Originally uploaded by CleverGirlBek

Wear what?

Fanny packs?

I’m glad to see my mother is up on this. She hasn’t stopped wearing hers since she hit 58 a decade ago. It’s her dog walking gear bag. Handily manages the poo bags, her mile long Virginia Slims, a lighter and the keys to all of the gates in the fortress…er…gated community,she lives in… I’m glad the State of Florida has launched this initiative.

Perhaps the fanny pack campaign will spread far and wide- Click It or Ticket seems to touch many states, perhaps Wear It Florida will do the same. People everywhere will be buckling up their fanny packs and their seat belts. Movie stars will be spotted at shmancy red carpet events and instead of “Who are you wearing?” and a toe to crown pan the lenses will zoom in on those belted bags of glorious hands free convenience.

In all seriousness, I have seen the commercials. Florida has launched a campaign to promote boating safety through the wearing of life jackets.

Anyone who is around boats and boat supplies probably knows that the little “fanny pack” depicted in the logo is actually one of those fancy and convenient self-inflating flotation devices. Basically, they inflate when you hit the water.  The majority of self-inflating pfd’s have the familiar look of more traditional personal flotation devices but without the bulk.  Only a few are “pouches” that look like the ones in the logo. So which graphic would have taught more on glance? Fanny pack or traditional life jacket shape? (maybe a bright orange to depict “safety”?   just an idea…)

I did a little research… Turns out that in 2007 there were 77 boat related fatalities. 70% of the accidents occurred in situations, if I am understanding this correctly, where the operator of the boat did not have formal boating and water safety training.

Here is what I am finding very interesting…

Boat operators under the age of 21, in Florida, are required to have a boating education card (signifying that they have completed boat/water safety courses…courses are even available online).

According to the report available from Florida Fish and Wildlife (http://myfwc.com/law/boating/) 51% of the folks who perished in boating accidents/mishaps drowned. That is (rounding down) 39 people in 2007. The rest died from “trauma” or “other”….

Interestingly, in these fatal incidents, 87% of the operators were over 21 years old. (to balance that 19% of the operators were in the 21-35 age bracket and theoretically would have been under 21 and would have been required to have completed a safety education course as the act to require that of the under 21 crowd was put into play in 1996. Note that this still leaves 68% of operators in fatal boating accidents in Florida in 2007 as not required to have completed a boating safety course. By the way, the under 21 crowd only accounts for 13% of fatal boating incidents in 2007. (Numbers not adding up? 1% did not have ages reported)

So, 39 people drowned in boating incidents in 2007.

I assumed, with the amount of advertising the Wear It campaign has been sucking up, that the number would be much higher.

So why do I care? Well, I found the fanny pack thing funny. I know what it is, but I’m betting that if you showed that logo to anyone who is not already boat and water safety savvy they will probably guess it’s that fashion icon of the 1980’s- the “waist bag”…

Now, if 70% of accidents occurred on boats where the operator had no formal safety education, then couldn’t we assume that those 70% might not know about the inflatable flotation devices and that they might, on a logo, look like a fanny pack? Especially if the folks are not year round water/boat folks, I don’t see how this logo is going to create any recognition for water safety in the audience that needs to be getting this information and getting it now. However, any Florida-based manufacturers of fanny pack souvenirs may want to hop aboard this campaign.

Anyway, the other day I was looking for some Florida agency issued water and pool safety printables- bookmarks, stickers, anything at all to add to the goody bags for the last day of preschool. I found tons of information on child drownings in Florida and safety suggestions for parents and caregivers to implement, but I found nothing geared for kids. I found printables from states that are not even in the “top 10” drowning states… Perhaps this sort of thing is available in person and not online…One thing I have noticed since moving here is not that much information regarding our state, state offices, and procedures is available online, or at least not easily located or interpretable.

In 2001-2005 an average of 73 kids 0-4 years old died, per year, by unintentional drowning (yes, they specify unintentional.)

In all ages groups an average of 465 people died in unintentional drownings every year between 2001-2005 (which was the last year they published the report). 7% of the total drownings were boating related. 61% occurred in pools or natural water (27% are reported as “other”, 5% were bathtub related).

67% of drowning deaths were in people ages 25+

71%of cases (in 0-4 year old drownings)accessed the pool through a door leading from the home to the pool area. And there really has not been much of a drop in swimming pool related, unintentional drownings in the 0-4 age group since the October 2000 application of the Pool Barrier Law. This tells me that not only are people not using enough layers of security around their pools for whatever reason (expense? aesthetic? there can be many reasons, obviously none of them valid when we are talking about the life of a child, but for what reasons are these layers of safety being breached or not created at all? this definitely warrants further investigation, in my opinion… I think if accidents are happening because of minor oversights, then how can all of us work together to fix those oversights…), it also suggests to me that kids are not being taught rules regarding safety early enough. My kid knows that he cannot leave this house or his grandparents house- and I mean the actual four walls of the house- unless he is holding the hand of one of his parents or grandparents. I believe educating him about this from early on has helped stave off many potential tragedies. I do not believe that any of us are invincible, but keeping him as safe as he can-when he is in sight and out of my sight (by educating him) is my top priority. He cannot experience the joys of life, he will not have the chance to reach his potential, if I do not do my job in teaching him safety. I also was unaware of some of the things that happen when someone drowns- I did not realize that drowning is typically silent. That usually nobody hears a splash of a child falling in the pool. Once I learned that I tightened security. Perhaps if more people knew that they would realize that the minute where they run inside to turn off the kettle or grab the phone is one minute too long….

And the literature available regarding child safety and water is geared at parents- it should also be geared at kids. In a parallel, adults may know plenty about keeping our kids safe in regards to strangers, but unless kids are taught the rules regarding strangers and safety, our knowledge is only as good as our eyesight and as far as the nearest wall or door. It needs to be the same with water safety. It isn’t a complete fix, but education of everyone, might help the numbers some.

Another thing that we are terribly aware of in our family is that adults do drown. We have experienced this tragedy in our family, not too long ago, and I have read about it in our city at least twice since the new year. These adults had one major thing in common. They were swimming alone.

Nobody should swim alone. NOBODY. Perhaps many of these drownings and near drownings (which number over 1000 on average, per year, in Florida) could have been prevented and lives saved if people of all ages would learn and follow this rule.

Perhaps if the State of Florida would take the advertising dollars spent on the potential prevention of the loss of 40 lives each year and spent even just a portion of the time and energy on educating adults and children on the dangers of swimming alone, then perhaps a real dent would be made in these numbers. Potentially, hundreds of lives would be saved each year.

Fanny packs* are just not going to save lives.

*and for the record I understand that the self-inflating devices are more comfortable to wear when on a vessel and more likely to be worn. Detailing that as an option for boaters would be smart, but on a logo it’s not reaching the folks who aren’t educated on the types of safety equipment available in the first place)….

Helpful links:

Florida Fish and Wildlife Boater Education information:
http://www.myfwc.com/boating/safety/
(they have links and more information on online courses that are available at no cost)

Florida Boating Accident Statistics:
http://myfwc.com/law/boating/

Epidemiology of Unintentional Drownings in Florida, 2001-2005
http://www.hillscountyhealth.org/healthpromo/pdf/drowning_report-Florida_2001-2005.pdf

Wear It Florida

http://www.wearitflorida.com

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