Tag Archives: Special Needs, Education, Asperger’s Etc…

Hello Friend.

26 Dec

Hello.

Originally uploaded by CleverGirlBek

Boy’s big wish from Santa this year was for an “xo laptop”…

We decided to tighten our belts more, suck in our guts, and instead of a mountain of less expensive goods that get lost in the shuffle, get him one through the “Give One Get One” Program.

The benefits are many.
1. We bought one, the one that we gave will go to another child somewhere else in the world as an educational tool…

I love this idea, but our home economy doesn’t really allow for this degree of charity… After all, almost all of our money, goes to directly support individuals with type 1/juvenile diabetes, arthritis, autism/asperger’s, and depression and a slew of other issues.  When looking at the cost, the “2-fer” part makes it look positively cheap… When looking at the reality that we just get one for $xxx it is still a wise investment as it will help boy with skills in all areas. Sure we could do that on our regular computer, but that would wind up in lost time and money (on hold with customer service, having computer serviced, possible emergency intervention by Geek Squad) and the cost quickly (trust me on this one) takes care of itself…

2. Our mac may now be safe from the mad clicker/deleter…. He has no interest in our boring mac’s.  He has a swanky, rugged looking, very useful machine that we are not yet regulating…(the xo will have to go on the same “time bank” as other activities, but we are giving him another day to explore…)

3. This is an adventure for all of us- we are mac and ex-windows XP people…So we have quite a bit to learn…The “xo” let boy jump right in and explore… So far he has drawn pictures, made digital music, written some bits for a story he is working on, played “secretary” with me (he dictates, I type…), and made the speech emulator say “Who farted?” followed by a laugh that he had to spell out…He also took a bunch of photos of himself. The amazing thing is that we didn’t show him any of it. We showed him how to open the case and shut the system down, but that is it. He is learning this new-to-us OS the way I learned mac… Marie Montessori is smiling down on us…

4. I tried to explain the “give one, get one” thing to him and the intentions of OLPC, and his interpretation seems to be that there is a kid, elsewhere in the world, that he is connected to because they have, in a way, twin computers. I think his perspective is somewhat like my own at his age- do you remember those “for the less of a price of a cup of coffee” from back in the days when a cup of coffee was less than $0.40 commercials? Well, I wanted siblings when I was a kid and I was adopted. In my brain this equated to being able to buy a sibling for $0.40/day. I remember rolling coins for my mom on occasion and thinking, “Wow. This is like a month of a sibling.”…I digress…

Speaking of the concept of “other” and a world without boundaries, I know it’s probably not possible (or way far outside of my noggin to even think about without sweeping some other important stuff off the table) but it would be amazing with the give one get one if participants on either end could opt into a penpal sort of a program (via the xo, of course)…

Anyway, here is boy waving and saying “hello” to whatever friend may be out there….

(and check out that sweet swiveling screen! I have already been informed “Your Macbook screen just sits there”… :-)

Anyway, there is more to chat about regarding our Christmas morning, gifts, mayhem, etc…But I am going on day 2 of being in bed (boy is sitting on my bed in the photo…he grabbed his laptop and sat right next to me with our CushTops/lapdesk-y things and we went to “work”….

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Difficult Day…

14 Oct

Love Oma…

Originally uploaded by CleverGirlBek

Had the eval review with the county education folks…

Kiddo has significant impairment and they feel he needs to be in a classroom dedicated to special needs and social communication and fast.

They are suggesting a school that is at least 30 minutes away….That’s 2 hours of driving. 5 days a week. Full days.

They said he can start tomorrow if we can get the public school enrollment stuff together by then.

Finally the psychologist said “or we can work on a gradual transition”….

Lots of leg work to do…

Lots of information to understand…

Lots of lack of funds to keep him in his current school and beef up his therapies and total lack of support from the school district unless he is in the intensive setting.

Frick.

Called my dad to talk about something else and just kind of let it all out.

I mentioned something else about my mom and he mentioned that she has other things going on, since her mom died.

Yes. My Oma died, apparently, on Monday. No, it wasn’t unexpected. She has a major stroke a month ago and has been in a coma and receiving hospice care. She lived in Germany. When I was a kid we visited her and Opa every summer in their tiny little storybook town.
When Alex was born, my mother wouldn’t let me send pictures to Oma in the home, because Oma didn’t want pictures of the baby taking up space. Ouch. Have I mentioned the narcissistic control of information in our family?

Anyway. I’m sad. I’m overwhelmed. I’m having a really hard time functioning right now. Part of me wants to pour my wee bit of energy into my raw materials. But the rest of me just can’t move. It’s like when you overfill your cereal bowl as a kid and then put the spoon in to get a bite and…well, you get the picture. My head is at maximum capacity. I’m fixed on one spot. Eyes wide. Tears arriving at regular intervals.

I’m going to bed because my brain and my heart are just so overloaded with the events of today and we have decisions to make but so much conflicting information. And at the heart of it is this little boy who is just so sweet and loving and overly trusting and who sounds like a freaking genius but the reality is he cannot practically use language to communicate. He doesn’t converse. He announces. He may be on the ASD or have Aspergers (scored “highly probable” in both) but to have the specialist look at him we have to take what is a leap of faith for most parents, but we also know we can’t do that. We also know the nuances that make our kiddo unique and wonderful but also make him eligible for these services, also put him at risk for many of the ills of our school system, and of course, our district says our concerns are unfounded but apparently they *have* to say that or they just don’t read the freaking newspaper. Meanwhile, they follow the “hear no evil, see no evil, speak no evil” theory that occasionally gets broadcasted by a frustrated and angry parent but then disappears from view before anyone can actually view it. Also, I just can’t block out the comments on most of the articles about autism and special needs and discipline in our great state of Florida. The overwhelming majority of comments are from people who think that autism, Asperger’s, and the like are nothing more than bad parents and spoiled kids. Some frustrated mom of a kid with autism said “if your kid had cancer, would you try parenting them into remission”….

Anyway.

On most days I am a mac.

Today, I feel like a PC.

And I really need to reboot….
xo
b

ps. the chest in the picture was made by my oma for my childhood dollhouse. I didn’t know she died yesterday. But out of nowhere Alex went to explore our shelves and my treasures, and picked this up…Then he picked up my little glass/mirrored cube with my Swarovski hedgehog/porcupine and birthday cake- gifts from Julie, (dearest friend and my birthmom,) Julie’s mom, my biological grandmother, died before Julie found me. She loved glass and funky jewelry. Alex was intrigued. I was reminded of how interesting life is and how it reconnects people and spirits in the strangest ways….

ADDitudes…

14 Sep

It’s ADHD awareness week… (ADD is grouped in with ADD…Even for those of you that definitely lack the “H”)..

There are many, many fabulous resources in cyberspace covering many different aspects of ADHD…From many different angles…

One of the best jumping off points for info on living (as a person with it, or a person with ADHD kids, or spouse, etc) with it can be found at ADDitude

Another great resource is CHADD but for me ADDitude is much more anecdotal, accessible, and informative for my learning style and our family issues (all three of us have ADHD/ADD…You probably knew that about me just by reading my blog- even the non-ADD specific entries!)…    I do use any and all resources I can get my hot little hands on though…

Oh and ADDitude has some wonderful printables to help with organization/scheduling/practical stuff as well as fact/suggestion sheets on many topics within the scope of ADHD/ADD…

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

International Ataxia Awareness Day

25 Sep

Today is International Ataxia Awareness Day.

Never heard of Ataxia? I had never heard of it either, until I met Auntie Patti.

Ataxia is a slow moving and unstoppable thief.

As a bystander, you feel powerless.

We aren’t totally powerless.

Please take 5 minutes today to read up here:

Ataxia Fact Sheet

Ataxia.org

Wikipedia’s easily digestible info on Ataxia is here:

http://en.wikipedia.org/wiki/Ataxia

Sadly and tragically, Auntie Patti passed away a week ago today. To promote and assist further research please consider a donation to the National Ataxia Foundation are appreciated – if you would like to make a donation of any size you may do so here

(if you do donate please select “research giving” and “sporadic ataxia” in the drop down menu… Please consider donating in memory of Patricia Benyo. Thank you.)

*hugs*

B

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