Just call me Jiji

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

Archive for the category “My Alphabet Boy”

Extra! Extra! Read All About It!

Here is a (very belated) update on “Leon’s Locks for St. Judes Kids Fundraiser”.

As you may or may not know my son, Leon, had been growing his hair since 1st grade to help a child at the St. Jude Children’s Research Hospital. Four year’s later my little guy isn’t so little anymore and is going into 5th grade (I KNOW! Right?) and met his goal to donate his hair. He also has met part of his goal to help the children of St. Judes. While he did not meet his personal goal of raising $5,000 he sure as heck did an amazing job in raising over $1500. His story ran in a local newspaper a few weeks ago. You can find the story here, but please note that the link provided in the story has been unfortunately closed, we are looking to reopen the event.

We are just so proud of him. He is just such an amazing kid.

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From One Differently- Abled Child to Another

My Wild Child

Leon is 9 years old and he has Asperger Syndrome /High Functioning Autism. He is an extremely  bright boy with big ideas and an even  bigger heart.

One of  the many wonderful characteristic of Asperger’s is Determination, and he’s got  plenty of that.  When Leon has is heart set on something, he cannot be derailed. When Leon was in 1st grade, he watched a video presentation in school about St. Judes Children’s Hospital, on that day he decided he wanted to help the kids of St. Judes, because, in his words, “I can help kids who are really, really sick” .  He then told me he wanted to cut his hair

In 2008, sporting his blue mohawk

(which was  Mohawk  at the time). When I asked him why, he said “because, I want to donate it to the ones that are bald”.

  Leon has not cut his hair since and that was back in 2008. In that time he has been teased, mocked, and bullied by other kids. He is often mistaken for a girl. But Leon takes it all in stride. He simply explains to those patient enough to listen, “ I am not a girl, I am a boy. I am  just growing my hair to donate to St. Judes Kids”.

In 2011, we found out that there was no guarantee that his donated hair would go to a  St. Judes Child. In fact it was unlikely. This did not sit well with Leon at all. He was very upset in fact. Although he knew that his hair would still go to a good cause, it was the children of St. Judes and their story that had touched his heart.

This is why he began hosting the “Leon’s Locks for St. Judes Kids Fundraiser”. It was important to him that he still do something for St. Judes Kids. Leon set his goal quite high, at $5000. We know it is a long shot but we have always taught him to reach for the stars and to believe in himself.

We worked together as a family to get donations where ever we could. His father and I reached out to our contacts via email, Facebook, and this website.  We also had cards made up for Leon to give out when the opportunity presented itself.

Leon’s Story Card

He gave them out to friends and their parents, at birthday parties, and communions. We carried them with us where ever we went. We even had a pin and a T-shirt made that said “ask me about my hair”.

Then when asked he could tell his story and give out a card. This worked out very well, because Leon did not always feel comfortable approaching people he did not know. But when asked he was always more than happy to tell his story about why his hair was so long. He spoke to people on the train, in restaurants, and we even hung out in Times Square for a while, giving out information cards.

Times Square NYC

 

.Both his dad and I are very proud of how much bravery and confidence he has shown when approaching and being approached by others. We love how much partaking in this, has helped him improve on his social skills, something that is greatly hindered by his Asperger Syndrome.

Being a part of this fundraiser has helped us grow in so many ways, both individually, and together as a family.

Tomorrow, July 7 2012, we will celebrate with our friends and family at our Annual BBQ that we have every year in July. At some point in the evening Leon will cut his hair for donation to “Locks of Love”. And while we  are happy to report that since Leon began this fundraiser in March 2012 , he has raised $1385.00;  we hope to continue in spreading the word and getting more people to donate to his fundraiser for St Judes Children’s Research Hospital.

Folks can donate with a credit card via this link https://waystohelp.stjude.org/sjVPortal/public/event/page/displayEventPage.do?sectionStyle=subMenuFour&eventId=310924&programId=2002

Please forward and share this story as much as possible!!

Leon’s self portrait

SEEEEEE!!

We’ve just had an extremely busy weekend, so I haven’t had a chance to give an update until now. But I really didn’t want any more time to go by with out takeing moment to say a great big  Thank You to Gail Roca of  The Kids Kloset for allowing us to fund raise at their 2012 Nassau Spring Event.

Leon is thrilled to say he raised $502 this past Friday thru The Kids Kloset bringing his total so far to $1362. His response to the total funds raised thus far, was “SEEEEEE I DID make it to $1000, and more!” .That was in reference to my comment to him after he told us his goal was $5000, which was, “Leon that’s so high, you’ll be lucky to even reach $1000.

I am fairly positive that this won’t be the last time that this child proves me wrong!!

I am one proud Mama!

Thank you Gail and The Kids Kloset

…and they’ll tell two friends…

Leon is very proud of himself, as well he should be. The “Leon’s Locks for St Jude Kids” fundraiser that he is hosting online, may have had a slow start but as of today it is just $5 shy of $700.

Leon is still determined and confident that he will reach his final goal of $5000.

We have succeeded thus far by word of mouth and reaching out to our family and friends via social networks like Facebook, Twitter, & Pintrest; and of course via his dedicated webpage on this blog.

We’ve reached out to everyone we know personally and have bid our contacts to further spread Leon’s message.

Our most successful venue thus far has been by way of Facebook. We’ve posted this link, at least once a week (if not more), and asked that people like it and share it on their own walls. Additionally we have also created a Facebook event for this fundraiser as well. The hope is that everyone invited will then invite as many people as they are comfortable with from their own contacts, in an effort to spread the word even further. And then of course their contacts will do the same, and so on, and so on, and so on.

Remember  when Heather Locklear told 2 friends and they told 2 friends and so on and so on…?

Hey you could be like Heather too! Just follow this link to our Online Facebook Event page and let us know you are in, then invite two friends (or more) to then invite two more friends……

…and so on and so on and so on…

That would actually go a very long way in helping us to get the word out and hopefully get the donations to reach goal.

Thank you for your support!

Still growing….

2012-04-18 010

Spreading it on Thick

First I would like to THANK all those who have been so generous to contribute to Leon’s fundraiser thus far!!! We have received contributions from all different parts of the country and across the globe. (Thanks to some friends is Germany) 🙂

You are all so very AWESOME.

The Leon’s Locks for St. Jude Kids fundraising event is still ongoing. So if you have not had a chance to donate yet, please go to the website now and make a donation. Any amount that you can afford great or small, will help to make a HUGE difference, in finding new treatments for childhood cancer and other catastrophic diseases. Your donation can help St. Jude continue its lifesaving work against pediatric diseases.

Another key and very important step that you can take to help Leon to reach his goal of $5,000 is to help us spread the word. Help us spread the word by forwarding this link to everyone you know via Email, Twitter, Facebook, and even on Pintrest.

The more people we can reach; the closer we will get to Leon’s goal. So please help us spread the word.

He means Business

Leon wants to get the word out as much as possible, so we have ordered business cards for him to hand out.

What do you think of the above design?

Should we keep it simple or add more info?

Leave us your opinion in the comments section.

Leon’s Quest…

Welcome to Leon’s Locks for St. Jude Kids

My amazing little boy has been on a quest to,

Help the children of St. Jude.

This is his story;

It was just over two year’s ago when 7-year-old, Leon, came home from school after a presentation given at his school about the St. Jude Children’s Hospital Math-a-thon.

He begged me to give him permission to do it.   Of course said yes.

Then he said, …..”Oh and mom, can I get a haircut?”

“Why do you want a hair cut?” I asked. “Well, I want to donate it to the ones that are bald….”

I said yes, thinking it would never last; but I was super proud of him none the less.

And that is when he committed himself to grow his hair long enough to donate it to a child at St. Jude Children’s Research Hospital.

Now it is two years later; he has endured the bullies at school and in camp, who teased him, picked on him, and began calling him a girl. Which only exasperated his Aspergers Syndrome, causing him to spin or walk in circles. And that provoked even more teasing. We  put a stop to the teasing and offered to have his hair cut several times, so as to avoid being bullied. Leon’s resolve was stronger than ever. He refused to to give in.

His hair is now over 10 inches at this point and is ready to be cut.  However Leon recently learned that his hair wouldn’t necessarily be going to someone from St. Jude, (although it would still help someone in need). This was very upsetting news for Leon.
Convincing a child with Asperger’s to change his mind can be an uphill battle. Leon’s Aspergers, makes it very difficult for him to transition from one thing to another, especially when it is something as important to him as this. For more than two year’s, Leon’s focus has been on helping St. Jude kids. So with this news, Leon’s determination to help St. Jude grew even more resolute.  He of course still plans to donate his hair, but first he wants to help the children of St. Jude.

And Now, A Message from: Leon 

Welcome to my Leon’s Locks for St. Jude Kids event page.

My name is Leon Oldfield and I am in 4th grade. When I was in 1st grade, I watched a video in school about St. Jude Children’s Research Hospital. It made me want to help those kids that were just like me; except they were very, very, sick and some of them were even bald. When I got home from school, I told my mom that I wanted to join the school fundraiser to help those kids, and then I told her I wanted to donate my hair to them too. My mom told me I would have to grow it real long. And that was just fine with me.

Now my hair is really, REALLY. long, but that doesn’t bother me at all. Because of my Asperger’s Syndrome, I tend to hide behind it, so I know I am going to miss it, but it is time to cut it. My hair will be donated to make a wig for someone who really needs one, but I found out it might not go to someone at St. Jude. So now I am hosting this event to raise money that will help out St. Jude kids directly.

This event will help St. Jude Children’s Research Hospital find new treatments for childhood cancer and other catastrophic diseases. Your donation can help me to reach my goal of $5,000 and that can help St. Jude continue its lifesaving work against pediatric diseases.

Follow this link to make a donation. 

Check back often to see my progress. Thanks for helping me reach my goal for the kids of St. Jude!

Love, Leon

  PLEASE SHARE  either this page or  the donation page with EVERYONE you know. My sweet little boy with his heart of gold has set a fund-raising goal of $5,000. We are going to need all the help we can get! So please Tweet and Facebook away my friends.

.

For more pictures of Leon and to see how his hair has grown over the years click here and scroll down

Something more…

It has taken me a long while to really get the whole ADHD thing down, not that you ever really do get it completely down pat. There will always be more to learn with each new year and every new experience. I’ve had to educate myself (and a few others) about this neurological disorder, and it’s been exhausting and rough at times. It’s also been very enlightening, both about Leon and about myself (going over my own life with undiagnosed ADHD). I have learned more about life and myself  in the 9 years that this little boy has been alive than I had ever learned prior to that.

In looking for answers for him I have found a few for myself. Still, I never felt that I had enough answers for him. It has always seemed to me like what we knew about him, just was not enough. There had to be something more to Leon and what’s “different”  about him than just the ADHD. And I say “different”, because there is nothing wrong with my child, just a lot of differences! But his differences have made his life more difficult.

I’m not saying he isn’t ADHD; on the contrary Leon could be the poster boy for ADHD. His severe hyperactivity and uncontrollable impulsiveness has gotten him into more than his share of trouble. We have clearly seen how severely his ADHD has impacted his life and that without his ADHD medication he just cannot control those impulses and can find himself in potentially  dangerous situations. He’s goofy and quirky, and does thinks that make him so uniquely different from everyone else.

But it is also for that very reason that I have long said there’s got to be more too it than just the ADHD. The fact that we, both my husband and I have always known that our child cannot and should not be left to his own devises for too long when not on medication has kept me searching for more answers.

When he is left to his own devises things seem to become … well lets just say challenging, to put it mildly. He becomes argumentative and seemingly willful. His actions tend to be unintentionally destructive – just last week he managed to …yank the handle off of the refrigerator door; …battle it out with his Dr. Seuss toothpaste – leaving a smeary mess; …chew up a handful of paperclips; …stuff his pockets full of rocks, sticks, snack bags, bolts, pens, pencils and any other thing small enough to fit.

...and the answer is, "things found in Leon's pockets"

Leon doesn't squeeze his toothpaste out; he rings it out!

 

 

 

 

 

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

This child was a gift in my life, and all I want for him is the gift of a truly happy life. Is that too much to ask?

When I think of my one and only child; and I picture him in my mind’s eye, the first word that comes to me is BEAUTIFUL!

Yes, it is true, he is a looker, but that is not where his beauty lies. It comes from his heart and from his mind.

His beauty stems from his sensitive soul that can see another child in need of some thing; that drives him to attain that same something for another child. His wonderful heart that has devoted 4 years of his life to growing his hair out because he saw a little girl in a St. Jude Children’s Hospital video openly express her hope that someone would donate hair so she could have a wig.  In his brave heart that has courageously endured the taunts and the teasing by some of his peers, as well as being repeatedly and mistakenly referred to as a girl, by strangers. His caring heart and sensitive soul that loves all living things so much so, that spiders are not for squashing, they are for setting free outside in the yard.

His beauty lies also in his wondrous mind that is so much smarter than his dear old mother’s; his mind, that captures the ear of those around him with words that would otherwise belong to someone much older than him. It is in his beautiful mind that imagines the most wonderful possibilities; and gives birth to ideas that other 9 year olds would not of yet conceived of. His mind that is so analytic and technical  and literal that he surprises and intrigues most adults around him. His mind that I am told is gifted with an IQ in the very superior range, that should be enriched and encouraged to grow in knowledge and interest

Image

When I think of my little “Alphabet Boy” with his ADHD/ODD/SPD/LMNOP, the second word that comes to mind is SAD!

This child with all his exuberance; wicked intelligence; and killer smile should not be this unhappy with life or with himself. But he is. This beautiful boy with his gifted mind and his beautiful and sensitive heart is also a very sad and lonely little boy, and it breaks my heart into a billion little pieces.

He is not like most other 9 year olds. He’s different, and quirky, and weird. I have often said he marches to the beat of his own drum. He is as  unique, as an individual can be. And I love him in all his uniqueness. But I weep for him too. Because his differences make him feel so badly about himself.

 

Recently, we have had so new revelations about Leon and what makes him the way he is, Hopefully we can find some answers, and perhaps show Leon how to love himself as much as we love him.

Jason Lewis’ Love Child?

After my recent post about my beautiful, beautiful boy and his mission to grow his hair and donate it to Locks of Love.

Someone pointed out that he looks like a certain sexy hunk from Sex in the City.

What do you think?

Personally I think my little man is much cuter!!!!!!

(although I wouldn’t throw Jason out of bed for eating crackers…)

Oh and if there are any modeling agents out there … we are prepared to be wooed.  🙂

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