Just call me Jiji

…me, just pretending to be me ….now, where did I put that cape??

Archive for the category “My Super Man”

Just Call Me Jiji

I’ve changed my look…

Well not my look, but the look of my blog. I wanted to go with something a bit more user friendly.

And with the changes comes a new name for my blog……   “Just Call Me Jiji”

~me, pretending to be me. ~now, where did I put my cape?

I discuss my life, my family; the issues we face, the things we enjoy doing as a family, and the things I enjoy pursueing by  myself

With this new look, you, the reader get to go straight to the content you are interested in.

This is what I write about and why I write about it.

My Home Page – All posts in chronological order starting with the most recent. My blog tells my story and the story of my family; warts and all!

Hello World – About me, this is who I am, or at least who I try to be.

Disabilities and Special Needs – I discuss those disabilities and differences that we, as a family face on a daily basis; and the treatments and accomidations that accompany them.

  • ADHD – My son Leon was diagnosed with Attention Deficit Hyper-Activity Disorder-combined type, at the age of 5. It has severely impacted not only his life but both his father’s and mine as well. I’ve learned a lot from my little boy, and I suspect I too was born with ADHD. At this time I still remain untreated, but I am working on that.
  • Aspergers/ Autism –  At the time of this writing, it has been 6  weeks since Leon was diagnosed on the Autism  Spectrum with Asperger’s Syndrome (AS). This is is my first mention of it on my blog. It    has taken me this long to let it sink in. I am sure there will be many posts on this topic to come, because as of right now I feel as if I am starting all over again. I am a newbie again and have a lot to learn.

  • Comordids –      
                         …Oppositional Defience Disorder (ODD) – Along with Leon’s ADHD      diagnosis he also recieved a diagnosis of O.D.D, and boy is he ever. His defiance aside, my strong willed kid with some pretty strong convictions.
                         …Sensory Processing Disorder (SPD) – Leon has always presented with sensory issues. I have long suspected that he has SPD, and have written about it in the past. Now, with his new diagnosis of Aspergers, it makes a whole heck of a lot more sense.
  • Fibromyalgia (FMS) – I was diagnosed with fibro when I was about 28, although symptoms were present much earlier than that. It’s been a rough road, but I keep on trekking. As much as I hate reporting that which is so negative, it helps to get it all out.
  • Treatments and Medication- When it comes to my own health I am not as diligent as I should be, and for that I do often pay the price. But when it comes to Leon’s health I am a stickler for staying on track. I am well familiar with the old adage that states; to care for others, first one must care for one’s self. That is much easier said than done, but ultimately I aim to get healthy not just for Ron’s and Leon’s sake but for my own as well.
  • Special Education – This has got to be my least favorite topic, but when raising a school-aged child with a disability, it becomes one that often comes up. I have had my fair share of Special Education meetings, both good and bad. If I can pass on some helpful information that may potentially help other parents I am happy to relive some of my experiences here.

DIY – I’ve always loved using my imagination and being creative. I love the feeling I get when I see something and think, ” I can do that” or even, ” I can make something out of that “. It’s taken me a long time to amass some measure of confidence, but I am ready to admit I do have some talents.

  • Crafts – Drawing, Woodwork, Glass painting, Digital Scrapbooking, Clip Art, Costume making, and more
  • Party Planning – I love, love, love planning parties and making the Holidays Special. Give me a theme and I will make it happen.
  • Photography- I have always loved the art of photography. What I lack in technical skills I make up for with my eye for photographs. The thing I love most about photography is the ability to recall so many memories from a single photo.
 

Home Life – For me, home life means family life, after all, home is where your heart is.

  • Family – the  main characters in this blog are myself, my husband, and our son. In our house, it is just the three of us; but in our family there are so many more.
                              ...Just Jiji – Jiji (Gee-gee) is the name my precious niece gave me when she was just learning to talk, I enjoyed hearing her say it so much, it stuck. More info about me can be found here
                               …My Superman – My husband of over 10 years now, is every wish, I ever made on a star, come true. He is every prayer  for a good and happy life, I have ever prayed, come true. My life; the one I truly love living, despite it’s upheavals sometimes; begins and ends with him.
                                  …My Alphabet Boy – My son with his AS/ADHD/ODD/SPD/L-M-N-O-P  is the greatest gift in my life. from him I learn how to be me. I thank god for him every day.
  • Parenting – Being a parent is the hardest most gratifying job in the world, and the most important.
  • Holidays- just as much as I enjoy planning parties; I love planning for the Holidays and celebrating with family.

Travels – I love to travel! And I especially love to plan our trips. I get a little high off of finding great deals and planning out little side trips. We love amusement parks; especially ones that we can get wet in.

  • Disney World – I love me some Disney!! If I could I’d go every year. I’ve had a few trips that I still have yet to turn into a trip report
 
  • Theme Parks – Leon’s love of water parks started with Sesame Place in PA, and now we make sure to hit a theme park or water park  at least once a year.
  • Other Destinations – As much as I’d like to make Disney our annual trip destination, our finances (or lack there of) always get in the way. But we always make it a point to go somewhere, even if it is just a weekend road trip to PA.

Just For Fun –  

  • My Favorite Things – ever come across something and just want to share it with everyone cause it’s “just so cool!” ? Well this is where I do that. Well here and on Pintrest
  • Slideshows – Just some pictures I’ve shared over the years
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I Nominate; My Superman

I recently found this on  ellen ;

Nominate the Amazing Person in Your Life…

Do you know an amazing person who could use Ellen’s help? We want to hear about them! Tell us all about the most deserving person you know, and how Ellen can rock their world. Maybe it’s a family member or spouse who always puts your needs before their own, a neighbor who has changed your community for the better, or even a teacher who goes above and beyond with your kids. This season, Ellen’s gonna keep giving back!
Read more: http://ellen.warnerbros.com/show/respond/?PlugID=433#ixzz1RH3DUlaq

So I decided to nominate My Superman!

Dear Ellen,

I love you and I love your show. You and your show always make my day! You are just so genuine, with a hugely generous nature. You have a way of making people feel comfortable and at ease; like spending time with a really good friend.

Well good friend, I’d like to share something with you about my family, about my husband in particular.

His name is Ron, he is a handsome devil, a smooth talker with an odd sense of humor, a sci-fi geek, who rocks my world, and keeps things balanced in our lives. And he is the most giving and amazing man I know. He always puts the needs of our family before his own.  When I met Ron, he became the man who renewed my faith in hope. In short he is my Superhero.

My family consists of Ron (39), myself (42), and our son, Leon (8)

We have a good life, NOT an easy one, but a good one, because we have each other. Things have always been tough on us financially, and we always seem to muddle through whatever life throws at us, either on our own or with help from our extended family. And for this we have always been truly grateful.

We all do our best to make the most of our lives. But no one works harder than my husband to provide and take care of our little family. I try and do my best too, but I have so many limitations, that I fear he often gets the short end of the stick.

Both my son and I suffer from disabilities that require regular doctor visits and a lot of very expensive medication between the both of us. My son has severe ADHD/ODD and I suffer from Fibromyalgia. We have a HUGE deductible on our medical insurance and given our individual medical needs it is necessary for us to come up with a LARGE sum of money in a very small amount of time at the beginning of each year. He barely makes enough money that we can usually get by living paycheck to paycheck with just enough left over to cover and enjoy the little things like the movies or Cub Scout fees for our son.  But when the big bills come in, that’s when we really struggle.

This year, so far, has really tested Ron’s limits.  Ron’s car died, and while we managed to get by with only one car for a few months we did eventually have to buy a second used car, which is already in need of repair.

In addition to our financial stress, Ron has had to take on additional parenting duties, above and beyond all the amazing things he already does with and for our son, due to the decline in my health this year.

No matter what comes our way, Ron does everything he can to make things right again. He really is a good man, and he puts his all into everything he does. As a husband he is just amazing, not only does he work hard in the office every day, but he comes home to take care of a majority of the household duties, when I can’t, due to my disability; and he still makes time to be a Den Leader in Leon’s Cub Scout troop and spend quality time with him.

Lately though, it seems as if life has really been testing Ron’s limits. My husband’s normally optimistic outlook on life seems to be dimming. Right now, Ron feels as if we just can’t get a break and that everything is getting thrown at him all at once and he just can’t get ahead. Some days I look at him and he just looks so terribly defeated, like someone had just drained him of all his energy. It kills me to see him this way.

This is a man who truly deserves a break. Not only is he an amazing husband and father but he is also a genuinely GOOD MAN!

Ellen, PLEASE help me make my husband’s life just a little bit easier.

Here we are at his sister’s wedding, which also happens to be our wedding anniversary. (I am the one with the pink hair 🙂 )

Me and my Superman!

EDITTED ON Jan 19th 2012 to add:

Hey Ellen,

Being that this IS your birthday-month; I wanted to share with you that May is my husband’s birthday month. In fact, this year he turns 40 on May 13, 2012.

You know incase the SWAGGIN WAGON is in NY around that time???

That’s a hint…. you know incase you didn’t catch it.

Love ya Ellen!!

And my Superman!!!

Happy Birthday to ME!!

I celebrated my birthday this week, and despite my grumblings about the weather, it was very nice!!

I’d like to thank all the people who made my birthday special, and in case you don’t know who you are:

~ my Face Book friends, some of which I see on a regular basis and some I haven’t seen in many, many years or even ever met before (Lynn 🙂 ) for all your  well wishes from around the world.

~ well wishers who emailed, phoned, or sent cards, from NY, AZ, TX, and Germany 

~ friends and family baring gifts, from CD’s, DVD’s, tickets for two to a show in Manhattan, orchids, balloons, a family night at home, a fun – albeit VERY LOUD  night out – with both family and friends, CASH (thanks Mom), two tickets to see the cast of GLEE in concert, to being made Queen for the Day by my precious son, Leon.  I gotta say I really did get a kick outta Leon answering everything I said with “Yes, my Queen” or “As you wish, my Queen”  😉

I am one of those people who loves celebrating birthdays; especially my own. And definitely not because I am enjoying the aging processes; but because I am enjoying the living process.

Yes, yes, I know I’ve been grumbling a lot lately about how difficult it has been for me of late, living with FMS. HOWEVER, that is just what is at the surface of my life at this time. But beneath that layer of unfortunate… crap; lies many other layers of my life.

My ever-growing and never ending love life with my husband; the joy, wonder and pride  of watching my son grow and become; my sisterhood and friendships with friends – new and old; my ever-changing, ever maturing relationships with my family near and far, whether blood-related or bond-related; my accomplishments and achievements as a mom, a daughter, a sister, a friend, and a woman; life lessons I have learned and passed on; events and experiences I have yet to encounter; these are all layers of my life. These are the things worth celebrating!   

Happy Birthday to ME!!!    

My Valentine, My Superman

Happy Valentine’s Day to All!

….But especially to my husband and my son.

 
It is because of my husband and son,
that I am a heartless woman.
Ron has one half of my heart,
and Leon has the other half.
 
 

 

 

I fell in love with Ron almost immediately. Our blind date was part fairytale, part racy novel. We walked, we talked, we watched some videos (yes back then it was videos, not DVDs), we kissed, we talked for hours on end; with some more kissing in between, we felt sparks and acted upon them, we had brunch, we walked and talked some more on the beach, we went to a movie and he drove me home. We did all of that in one date; one very long first date – 36 hours to be exact. And we have been together ever since.

I started falling in love with him on that first date. A few days later, I told Andrea, the friend who had arranged our blind date, that I was going to marry this man. And I was not wrong.

I fell in love with him because he was a good kisser, a great listener, imaginative, smart, caring, passionate, sensitive, interesting, spontaneous and good (at a lot of things). And because he made me feel special.

After almost 11 years of marriage a lot has changed in our lives. But not the way I feel about him.  We’ve been married long enough to have had a few ups and downs, but through it all we have always loved one another. That is no surprise to me, it goes without saying; because I know deep within my heart and without a doubt that Ron was made especially for me.

What surprises me, and catches me off guard sometimes, is those moments when I fall in love with him all over again. If only because, I didn’t think our love could get any bigger.

It’s happening right now, in fact. Over the past couple of months I have watched him care for our son and for me like he never has had to before; and it has me falling in love with him all over again.

This self-proclaimed SuperMom has found her kryptonite. It is  the combination of record-breaking cold temperatures and snow with my fibromyalgia. It has kept me immobile and either on the couch or in my bed for months. I’ve had to reluctantly, and with much guilt and despair, hand over my title of SuperMom to him.

He’s had to become SuperDad. Not that he wasn’t a super dad before, but this winter; this New Year so far, can not, and has not been easy on him. In the wake of me having to check out for a while he has had to step up big time. And boy has he ever!

He has had to be the one to get up with Leon when I can’t get out of bed (and right now that’s been 9 times out of 10, instead of the other way around); he’s been the one to get him showered and dressed, make his breakfast, remembers to give him his meds and packs his lunch and then gets him on the bus in the morning. Then he goes off to work for eight hours. When he gets home I am no better than when my day started. It’s gone beyond the usual discomfort and/or pain which was bad enough already, but not only has the intensity of the pain increased but the fatigue and the loss of energy has me so incapacitated that I can barely participate in life right now. I know that the weather is a major contributor to this change in my life but I suspect that my age and my changing hormones might be messing me up too. What ever the reason, the result is has been less than desirable. Rather than Ron and I working to care for our family together: Ron has had to take on the brunt of the responsibilities in caring not only for Leon, but for me as well.

And while I feel lousy about all of this, I can’t help but feel as if I am falling in love with Ron all over again, and again, and again!

He’s not just my Valentine, He’s my Superman!!

 

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Yipee Skipee it’s Halloween!

I love Halloween! It ties with Christmas as my favorite holidays..

Both are fun and festive! Christmas lets me get my shopping on and Halloween lets me get my costume on.

Last weekend we enjoyed yet another Halloween Celebration. I say another, because this year is no different from any other year, where we attend many different Halloweenie events.

Traditionally Leon gets to go trick-or-treating at least 3 times each year.  First Leon starts his candy collecting in PA at Ron’s parent’s summer retreat, a campsite on the Delaware river, that they have been seasonal members of since Ron was Leon’s age, that hosts a costume parade, trick or treating, and a Halloween party at the close of the season in the end of September. His second T.o.T. collecting is usually at Pumpkin Park, a local amusement park that opens itself up for safe trick or treating every year, however there was scheduling conflict and we did not get to go this year. And lastly we always enjoy having a few friends meet up at our home for a light snack before we roam the neighborhood on Oct. 31, forcing our kids to collect candy for our – umm I mean their enjoyment. 

This year we have a packed Halloween schedule once again. In September, we had fun at the campground as usual. Leon wore a grim reaper sort of costume because as much as he wanted to be Emperor Palpatin from Star Wars, I knew the make-up involved in it would try his patience and his sensory issues. So I nixed it for the campground. He enjoyed himself none the less.

He’s the one all in black

Two weeks ago we went upstate to enjoy the fall scenery and do some apple picking as described in my previous post.

The 3 of us collected twigs, acorns, and leaves and put them together; and Leon snapped this photo.

Last weekend I spent Friday and Saturday putting our costumes together. I’ve always enjoyed making costumes and dressing up in either couples costumes or coordinated family costumes, and luckily Ron and Leon enjoy it too. Our theme is usually determined by what Leon chooses to be and then we work around that.

Being HUGE fans of Tim Burton’s Nightmare Before Christmas, it was only natural that we would portray characters from the movie. I am the Lovely Sally, Ron is Jack Skellington the Pumpkin King, and Leon of course is Oogie Boogie.

Putting costumes together for Jack and Sally was simple enough. Ron’s was completely store-bought and in the interest of saving money, (along with having an excuse to wear my leather corset) mine was put together from pieces of clothing that I already own (with the exception of the wig which I borrowed). Leon’s costume of the other hand was something entirely different. Oogie Boogie is not a readily available costume, in other words it had to be made. And Leon was very specific about it looking true to character.

I spent four hours creating Oogie’s head on Friday and about five hours creating his boogie, I mean body on Saturday. It turned out truly amazing if I do say so myself, I am quite pleased with the result!!!

You’re joking, you’re joking,
I can’t believe my eyes”

Mr. Oogie Boogie, Nightmare Before Christmas

We wore our costumes to a friend’s Halloween party Saturday evening and had a blast! Leon’s favorite part was getting to watch Nightmare Before Christmas and Scooby Doo with the other kids. My favorite part was the look of surprise on people’s faces when they found out Oogie Boogie was not store-bought. Well, that and getting together with friends.

On Sunday, Ron’s parents joined us at a street fair. We went in costume to participate in a costume parade and enjoy the farmers market and a wonderful musical group, The Bari Koral Family Rock Band. They were terrific but we had to leave early, Leon was having an off day due to the previous night’s activities.

Ron, Leon, my niece Kiera, and myself

You will notice that I did not go as Sally in the pictures; instead I was an eco-friendly witch. I felt that it was more appropriate daytime attire, and it gave me an excuse to wear my green dress that just happened to match my green witches hat that I had received as a gift from my sister a year or so ago. Hmmm.. Do you think she was trying to tell me something?

This whole week continued to be about Halloween festivities for us. Leon’s school hosted a pumpkin patch for the students during recreation time on Wednesday. He was happy to come home with a pumpkin, a pint of apple cider, and some candy corn. We decorated the pumpkin when he got home from school

It’s Not So Spooky Snoopy!

On Friday, Leon went to school in costume, as did the majority of the other students in his school. The principle, whom I adore as y’all know; led a costume parade in front of the school, and invited the parents to come and watch.

Jedi Leon

It was just so adorable to see them all dressed up and enjoying themselves. Our principle by the way dressed as Sponge Bob, which I thought was great. So did the kids, they just love her! Leon was excited to come home with his “crabby patty” prize for scariest costume. Funny enough, Leon did not wear his Oogie Boogie costume.  The student’s were not allowed to wear masks, so he donned a previous year’s costume, Jedi Luke Skywalker. Which, isn’t a scary costume, however, knowing my SPD son and his issues with clothing, I allowed him to wear a pair of skeleton pajamas as a costume underneath his Jedi costume, in case all that extra fabric was too much for him. So he went to school and marched in the parade as a Jedi; but by the time the principle got to his classroom afterwards he had stripped done to his bones, won scariest costume, and came home as a skeleton.

That same evening the PTA hosted a Fall Harvest Costume Dance. We  really, really wanted to show off the Oogie Boogie costume, and even though masks were not permitted, I allowed Leon to walk in as Oogie, knowing that my extremely hyper-active, run wild as soon as he hears music, ADHD child would take it off within 10 minutes of getting there. I was right, of course, and Leon spent the rest of the evening as a break-dancing skeleton. Which is quite funny to watch! Ron and I attended in costume as well. Ron as Jack, and I as the Green Witch, once more – I figured my leather corset would raise more than a few eyebrows in a school setting.

Conga!

CIt was very nice to see some of the other parents wearing costumes as well! My favorite adult costume was the Sleestak! As for the kids, the home-made Sally was great, as was the Mini Mad Hatter, the Peacock, and my favorite Little Witch in Training (just because she is the sweetest little girl).

Sleestak and Jack rev up the dance floor

The funniest part of the evening was when the DJ called the Sleestak and Beetle Juice over to help lead a dance. Funny because, he was pointing at Ron (aka Jack Skellington) when he said Beetle Juice.

You could not see his face under that mask but I am sure Ron was cringing every time the DJ (who was really great with the kids) said Beetle juice, which he said a lot. At one point Beetle juice, I mean Jack; I mean RON was asked to lead the conga line.

Conga, conga!

 I am very lucky to have a husband who is such a good sport (and doesn’t mind working up a sweat! – that is a rubber mask he was wearing). I think he really enjoyed it too, the notoriety, not the sweating.

On Saturday, Leon and Ron started their day early. Aside from Leon’s first Drawing class, they went to the Boy Scout Jamboree for the day, which being scheduled for Halloween weekend had to of course include a Halloween parade. Unfortunately they missed the parade, but they enjoyed the day none the less.

Happy Birthday BSA!!

When they returned, we got ready for a party at the haunted house across the street. Our friends (who are also our neighbors) go all out on Halloween. The outside of their r home gets totally transformed a week or two before Halloween, and is ever-changing. The house draws a lot of on lookers. This year the theme was a Cannibal Cafe and aside from the typical masked persons scaring the bejeebers out of passerbyers, including one who chases them down the street wielding a real chainsaw (sans blade); they added a new character to the mix. The zombie chef was working up his magic for the crowd, offering up; grilled upper intestines (because the lower ones taste like crap), liver and fava beans, fried fingers, leg of Sam, eyeballs, s.o.s. (shit on a shingle), and “The Exorcist” special. He was a crowd pleaser for sure.

The Spooky House day & night

(click pictures to enlarge)

Sunday, Halloween; was a very long day for sure. We spent the morning preparing for a Pre-Trick-or-Treat Get Together at our home. I planned games for the kids to play for prizes, including the ever popular mummy-wrap game which was a ball. The kids enjoyed a few crafts, some games, some chicken nuggets and cupcakes, and spending time with each other, at about 3ish we set out on our merry way, around the neighborhood. Keeping up with the kids was a task and a half. We managed to hit quite a few houses, some of them more than once, before we made it back.

Trick or Treat!

(click pictures to enlarge)

We had been invited back to the “cafe” across the street to enjoy yet another party because this year they decided to host a party on both nights of Halloween weekend, rather than just their usual one party on Halloween night.

Par-tay!

The second night was by far more crowded and busier than the first night, with both the invited guests and the passing onlookers. The live entertainment was a huge draw. Even Ron got in on it as kids high-fived him and asked to take pictures with him.

Ron enjoying the spotlight

And now I get to suffer the Day After  Halloween Hangover….

                                                                  ….that’s okay I got the cure

CANDY!

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