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Ever wanted a DSLR camera?

February 2, 2015

I have wanted a DSLR camera for some time now, I enter just about every contest I find that is giving one away.  I’ve done that because well, I can’t justify the cost especially since I have a digital camera, cameras on my iPhone & iPad plus somewhere I’ve even got several film cameras (none are the SLR or DSLR variety).  I love having pictures of my children and yes, I realize professional photographers have a gift/talent and that gift/talent needs to be rewarded and compensated for fairly; however, the cost of professional photos are often beyond my grasp.  I really miss Walmart’s photo studios (even if I didn’t need 150 pictures) at least I could afford those.  Paying $100s for a handful of pictures has always seem a inefficient use of limited funds and yet, I so would love to have professional photos of my children.  Plus how many times to you see a wonderful nature scene and think, “Oh, I want to capture this.” take the picture only to discover your point and shoot’s picture is a disgraceful rendition of the scene you wanted to capture?  I figured with a DSLR and some lessons I could at least take some semi-decent photos of my children and of nature as I see it and maybe even get some that could be displayed proudly along side those rare professional photos I have of my children.


Anyway, I’ve entered another contest and I get bonus entries every time someone clicks on my link ( and I get 50 extra bonus entries just for posting this:


Local wedding photographers
Image courtesy of: SnapKnot – Local Wedding Photographers

31 for 21

October 2, 2012

What’s this all about?

Well, October is National Down Syndrome Awareness Month and 19 years ago (August) I became the mother of a little boy that just happens to have DS I figure I need to jump on this band wagon and ring the bell so to speak.

Having a baby with Down Syndrome isn’t all the doom and gloom many doctors predict it to be, in fact, the early years often find you dealing with the same issues as all mothers of newborns deal with on a day to day basis. The difference? Well, some babies have heart issues (but then again in the typical population some babies have heart issues). Some babies have GI issues (oh, wait, that too happens in the typical population). When Nickle was born he had some heart issues but they were the same ones many newborns have Patent Duct hadn’t closed by birth but did within the week and he was diagnosed with an Aortic Valve Regurgitation (that is similar to the Mitral Valve issues many people have, basically his Aortic valve while fully formed didn’t seal when it closed so there was a little back wash so to speak). Around the time Nick was 6 we found the AVR wasn’t heard via stethoscope but only found during an echo and even then it took some looking. His ped at the time said we’d treat it the old-fashion way. In other words, what we can’t hear we’ll assume has corrected itself unless other signs show it hasn’t. So far, we’ve been good following that advice.

As a toddler and preschooler Nickle was behind many of his typical peers but he was able to figure out how to get what he needed or get where he needed to go. For the longest time he preferred to crawl commando style rather than on all fours. His OT (oh, that’s one thing we learned that was different from having a typical baby/toddler/preschooler — lots of assistance in the form of OT {occupational therapy — think fine motor}, PT {physical therapy — think gross motor} and speech therapy) finally got him walking by putting a golf club in each hand. He still enjoys golfing today and has actually gotten his Dad to enjoy the game as well. As his Dad put it, playing baseball or passing a football was out but golf was something they could do together forever.

Nickle is a senior in high school now and is so proud of that status (aren’t all seniors?). Life hasn’t exactly turned out like I dreamed as a young girl but in many ways it is much more richer than I ever could have imagined. There are struggles as we face life with Nickle as an adult. You moms of typical seniors who are worrying about your baby bird leaving the nest — take heart, they will fly provided you have given them the proper training (and even if you haven’t) and I pray you have given them the roots they need so they can cling tightly to those when they need to as life goes forward. As for me and Jeff, we’ll be working hard at teaching Nickle to fly and one day I can trust he’ll figure it out just as he figured out how to walk and run without those golf clubs in his hands.

May 27, 2012

Today I read a post called “Had Enough of Holland?” Let me tell you, the author Sarah Hoss, hit the nail on the head! This quote: “What maddens me is that his challenging behaviour and limited abilities bar him from so much that he could and would like to do, not because he sees himself as a problem, but because other people do; when systems and processes and ‘rules’ exclude him.” Really says a lot and truth be told sums up Nick in one sentence.  Jeff and I have said for some time Nick is his own worse enemy due to his behavior  issues; however, other people have often viewed him as a problem or as his disability and Nick, being Nick, is more than willing to live down to their expectations.
I really don’t know how far we’ve really come since Emily Perl Kingsley had Jason or even since I had Nick (18 years ago), but what I do know is we, as a society, have a lot farther to go before we can truly say those with a disability are treated and valued as typical members of society are treated and valued. (Then again, I wonder, do we really want that for our loved ones {remembering how even the typical are often tormented and not valued}.)

Sarahhoss's Blog

Welcome to Holland – NOT!

(Extract from Emily Perl Kingsley:) When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives.

You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome To Holland”.

“Holland?!?” you say, “What do you mean “Holland”??? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

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Zero Tolerance Policies

May 17, 2012

So often today we hear about the need for “Zero Tolerance Policies” and, at times, it does seem to be a reasonable solution but often it is really a “knee-jerk” reaction to some event that causes us (as a society) to demand that something be done to prevent future events.  Do these “Zero Tolerance Policies” really stop those future events?  Perhaps they do lessen the frequency of the events occurring but I would suggest that no, they don’t stop them but they are contributing to the death of common sense and reasonable discipline.

Why do I say that?  Well let’s examine some examples where “Zero Tolerance” has failed miserably and caused otherwise thinking adults to treat otherwise typical children as outright criminals with malicious mischief  in mind.

  • Have you heard of the Cub Scout that brought his pocket knife to school?
  • Or the Lacrosse players that were suspended?
  • Or how about the boy with the toy solider on his hat?

These are but three stories that show how having a “Zero Tolerance Policy” fails both our schools and our children.  Not one of these students had a “weapon” (and I put that in quotes because toy soldiers are definitely not weapons even if they happen to hold weapons and don’t we expect soldiers to carry weapons?) with intent to harm themselves or another individual.  Weren’t the “Zero Tolerance Policies” actually started to stop students from harming themselves and/or others?  Weren’t they initially started because we were all in shock that two boys from Colorado carried semi-automatic and automatic weapons into their school and shot fellow students and teachers?

How many of us grew up with classmates who had hunting rifles in their truck sitting in the school parking lot so that as soon as school let out they could go hunting during hunting season?  How many of our classmates growing up had pocket knives on them during school?  How many remember their grandfather or even their father carrying a pocket knife?  How many boys looked forward to the day their parents decided they were old enough and mature enough for a pocket knife of their own?  Because of today’s “Zero Tolerance Policies” how many of our own sons or husbands no longer have access (in their pocket) to a pocket knife?

Our country’s insistence of “Zero Tolerance Policies” hasn’t, in my opinion, made us any safer, but it sure has limited our freedoms.  How many of us feel like we are being assumed guilty until we prove ourselves innocent when attempting to travel by public transportation or even get a driver’s license renewed these days?

“Zero Tolerance” sounds like a reasonable solution until you find yourself on the wrong end of that policy.  The child that bullies does need to be dealt with but a “Zero Tolerance” policy doesn’t allow the adults involved (who know the child best) to make a reasonable decision on how to handle the issue.  I’ve heard of so many special needs children who get caught up in the “zero tolerance policy” when the truth of the matter is the typical child set the special needs child up to fall into violating the “zero tolerance policy.”  Now, some will say oh, it doesn’t effect that child, but it does unless their IEP is specifically written to show that the child’s disability might manifest in such a way to violate the policy.  How many parents or staff that write up IEP’s review every school’s policy to determine if the child’s disability might manifest in a way to violate said policy?  A child that has a disability might blurt out “I’m going to kill you!” (and truthfully, how many of us have said that in anger and never really meant it?) after being teased or bothered by the typical child (or even another child with a disability)?  Is it the socially acceptable way to respond?  Of course not, but you can bet your bottom dollar that the typical child won’t admit to egging on the child with a disability.  Now, with “zero tolerance” in place the special needs child is suspended or expelled.  The parents are left in the dark because they will be told “nothing happened to set him/her off.”  The staff, if they know this is highly unusual for the child will be frustrated because they will know that something must have set the child off but they are unable to keep the child in school or get to the bottom of the issue.

I say instead of “Zero Tolerance” we put common sense back into our schools and society and allow people in charge to review matters before making blanket one size fits all discipline decisions.  Let’s realize that one size doesn’t fit all and one consequence may be right for one child but totally wrong for another.  Let the school systems and the parents discipline, remove the judicial system from the equation especially when it comes to typical childhood antics.  Let the punishment fit the crime once more.

In follow up to the three stories I posted, the little boy that made the hat with the toy soldiers he received a medal.  (Here’s another article from the Army Times.)  The cub scout got a reprieve.  The lacrosse players won their appeal of their suspension.  So in conclusion there are still some adults out there that have some common sense.

Incredible story from Seattle Children’s Theatre

February 2, 2012

Incredible story from Seattle Children’s Theatre.

Stories like this warm my heart and remind me that even when I get totally frustrated over some little thing Nick does that very thing might just be something that is touching another’s life.

Many times in life we go about our daily existence and wonder if we are really doing anything worth noting.  Those of us with children with special needs can feel like the it’s us against the world, then one day something happens and the light is shining and those around us see.  This little boy sat in a dark theatre and was swept away into the world the actors portrayed, or did they just happen to step into his world that day?  I’m thinking for the first time someone entered his world and he was able to share it with those around him.



iPad plus apps

January 24, 2012

As most of you know my oldest son just happens to have Down Syndrome and along with that he has Speech Apraxia (basically he knows what he wants to say but can’t always get his mouth to say it so the rest of us can understand him), because of this we have often thought about augmentative communication.  What is augmentative communication?   According to the American Speech-Language-Hearing Association, augmentative and alternative communication (AAC) includes all forms of communication (other than oral speech) that are used to express thoughts, needs, wants, and ideas. We all use AAC when we make facial expressions or gestures, use symbols or pictures, or write.

Well, those of you that know Nick personally know that carrying around a notebook with pictures to point out wouldn’t be his thing.  To haul around a Dynavox (bulky electronic thing that costs major dollars and is definitely not what your cool teens carry) would be another no go.  Sign language was shot down on just about every IEP (Individual Education Plan) as “not everyone knows sign language.”  (Oh, and I guess we don’t want to take the time to locate a translator or teach those that work with Nick his signs.)  So, when I heard that Apple’s iPad had an “app for that” I got excited.  I started looking at ways to get an iPad (those suckers while cheaper than a Dynavox are still way expensive for the average Joe especially if he is raising a child with special needs) and that all so important “app for that.”

We applied to our local Family Support Services for the iPad, a case, insurance and the app (the app we wanted was one that most everyone in the DS community that we came across was recommending) total amount applied for was approximately $700.  We were told the fund limits families to no more than $1,000 a year.  We thought we’d be good — we were well under the total allowed and it was for a needed item that would help both Nick and our family life.   (Just think we would have a means of figuring out exactly what he was saying for once!  No more automatic no answers when we didn’t understand — we’ve learned the hard way that maybe or we’ll see meant “yes” to Nick.  We’d also learned the hard way that saying “yes” when you don’t understand can get you into some hot-water.)  Well, we found out we were approved for $350.  Major disappointment — that wouldn’t buy the iPad ($499 minimum) and we were told we couldn’t use it for the app (FSS doesn’t buy give money for apps — they might not get the one they said they were getting).  Our TC fought hard to change their minds without any luck.  She even explained that the iPad w/o the app was basically a toy.  (Yes, we have put games on the iPad but most of our current apps are educational or therapeutic in nature, but I’m getting ahead of myself here.)

So, with $350 in hand we needed to find more sources for funding.  During this time I learned of A4CWSN and was amazed by the time Gary James took in reviewing (and videoing the review) of various apps.  Gary told how he was the father of children with special needs and how he had discovered how the iPad could help his children and wanted to share with others in the special needs community.  (We can be a pretty tenacious bunch — we’ve learned early on in our children’s lives that we are their number one advocates and  we also tend to support each other.)  Gary’s dream was to put an iPad into at least 1 child’s hands in every state (so the 50/50 campaign was born).  Many people, businesses and developers have chipped in to make this dream a reality.  Unfortunately, there have been some disagreements and words have been said.  People have been hurt and I’m afraid what started out as a wonderful dream (that did come true for over 50 children and their families) may be ruined.

So, now we have our iPad and a whole slew of apps — many thanks to those developers who have donated apps to A4CWSN and other reviewers who have shared those codes with others.  For OT we’ve got Dexteria — my only suggestion so far to the developer has been to consider adding an option where the therapist (or parent) can include words their child uses to practice handwriting both cursive and manuscript.  For Speech we have iLeap WB-at, iPreposition, iSentence, Articulation, and Proloquo2Go (his ACC app).  We also have math apps, story apps, puzzle apps, spelling apps, games and other educational apps (ranging from preschool to high school level).

We have discovered that Nick’s aptitude for electronics has forced us to monitor his time on the iPad (he quickly figured out YouTube — hoping now I can steer him to Gube {rated G YouTube videos}), he also figured out how to reactivate the wi-fi (after I turned it off).  Passwords were quickly added to many things.  Nick, like most boys his age prefers the action games to the education apps, fortunately, he will listen to me and do the educational ones if the fun ones are also on the table to play later.  Just this past weekend we got Educreations and ShowMe for free — they are basically whiteboards for your iPad.  The boys were having fun coming up with basketball plays tonight (we took a picture of half-court and they used both whiteboard apps to run plays).

Well, that’s it for now — got to go run Nick back to bed so I can go to bed.

Eighteen Years Ago…..

October 3, 2011

I had grand plans of uploading this on August 7, but as you can see that didn’t happen — life happen instead.  So, just to update we gone from:

To this:

In some ways it seems like only yesterday while in others it seems like a lifetime ago.  What happened that day changed my life in a way that many experience and yet, in a way that few experience.  That day was spent in labor starting around 9a with a trip to the hospital.  Since we had made this trip a few times before we weren’t positive that today would be the day we’d meet the baby I was carrying (based on the ultrasound the baby wasn’t due for another month, based on my calculations he was due next week). {I always told my doctor being single had some advantages you should be able to pinpoint a due date, but he would laugh and say the ultrasound was right — well, I think Mama was right and the ultrasound was wrong.}  As I said, I spent the day in labor and after a heated discussion with the doctor on call that we weren’t stopping my labor and starting me back up in the morning, my LDR nurse made a suggestion which encouraged the baby to drop into position for imminent delivery.  Of course the dude with the MD after his name wanted to argue with the lady with the RN after hers, fortunately for me and the baby the RN won the argument and less than 10 minutes after the MD wanted to stop my labor, my son joined me in this world with his Nana as my support partner.
From there things got crazy….the staff got quiet (after announcing his apgars 9/9) and the doctor mentioned wanting to run some tests.  I don’t totally remember everything that happened at that point, I remember my mom (or me) questioning they doctor and making comments like…”so, mom and I have a space between our big  toe and the next one” to “his bio-dad has _______.”  At any rate, they move me to a room and Nick to the nursery (yes, this was back when WVU still had a newborn nursery and you labored in one room and recovered in another).  I remember a nurse (one my mom had golfed with in the WV Women’s State Am the week before) coming in at some point and asking me if I knew what they were testing for and Down Syndrome being mentioned (still don’t remember if she said it or if I did).  I remember not hearing anything from anyone (medically) until after my parents came down to see Nick the next day and my Dad yelling at the nursery staff for not bringing me my son or at least coming and getting me so I could see him.  (Dad had found out that Nick was having some issues and was on oxygen and had a NGtube.)  However, by Monday morning I was being inundated with information the OB showed up, the ped showed up, the geneticist stopped by — one of the first things out of her mouth was “there is a list of people who love to adopt children like this” — {hmmm, do you say that to all new parents or just the single ones?}, the cardiologist, the orthopedist and the social worker all showed up.  Can we say information overload?  I don’t even remember if my parents were there during all the consults or some of them or none of them.  I do remember feeling overwhelmed.  I do remember the geneticist saying that it is hard to just look at a newborn and say conclusively that “baby has Down Syndrome.”

Nick ended up spending a week in the newborn nursery learning to suck/swallow and breathe and making sure his heart was functioning properly.  Mom and I scurried around to finishing getting everything ready for his homecoming.  We also took the time to take care of the various other issues that having a child with Down Syndrome brings to one’s life.  I think it was around this time I found this (well not this version exactly but the poem,WELCOME TO HOLLAND. by. Emily Perl Kingsley. c1987):

Now, one thing I’d like to say, some people might find this poem depressing saying “I didn’t plan on a trip to Italy” why are you trying to sell me on Holland when I never had a designation in mind in the first place.  To them, I say great this poem probably won’t apply to you.  To those that had your life as a parent plotted and planned out and once you got a diagnosis that didn’t fit into your plans, then I encourage you to read, listen, watch with that in mind.

It was also during this time I met Cindy & Tim Casten who started the UpsandDowns group on AOL and later Yahoo.  Their youngest son, Matthew, was born just 11 days after I had Nick.  So together we navigated this new adventure, while they had some experience with parenting versus my total inexperience with parenting we were both novices when it came to navigating the way through the special needs world.  I tackled raising Nick from a “he’s a baby and my dream for him is to do what babies his age do.”  They were coming at it from a slightly different perspective (often from more of a “but ___ did this at that age”) and we were both able to balance each other out (or at least I felt we did at the time).

Nick and I spent the first 5 almost 6 years of his life on our own and then we met Jeff.  On May 29, 1999, Jeff and I got married and shortly, thereafter, Jeff adopted Nick.  Let me just say, Jeff has been a total blessing to both us especially as Nick has gotten older and bigger.  Today Nick is just at (or slightly above) 5′ tall and weighs close to 120.  Since I’m only 5’3″ he is almost as tall as I am, I’m still hoping and praying he puts on a few more inches (especially since I noticed this weekend that little brother Mitchell is about to surpass him in height).

This summer Nick has gotten a chance to do volunteer/work at Goodwill and he is loving it.  We do have to watch saying work or Goodwill because now Nick thinks every time we say Goodwill he needs to get ready for work.  He also won a laptop computer which he loves — just need to locate really good net-nanny program.   I did figure out how to limit the time he is allowed to log on — he is currently trying to figure out how to beat that.  (He just announced — his computer doesn’t love him.)