Just call me Jiji

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

Archive for the tag “Family”

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

Advertisements

…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!

What can you make with fishing line, crazy glue, and scissors?

Well, probably a lot of things. But what Leon made was a messy and chaotic morning!

English: A pair of kitchen scissors.

Ron has gotten plenty used to dealing with Leon in the mornings. While I sleep through it all.

But today woke up to Ron yelling and Leon screaming. From what I could make out, Leon was not staying on task and Ron was getting frustrated over …all of it(?).

So I stumbled out of the bedroom to see if I could give a hand. What I witnessed was Leon in all his …ADHDness! And Ron cleaning up after him with steam coming out of his ears!

I recognized this scenario right away, it is  the same one I deal with, when Leon gets home from school. But I also saw something else… a reminder. A reminder of what can happen when Leon is left up to his own devices. He really does need supervision when he isn’t at his best. Which translates to; when he is off meds.

My first question to no one in particular was, “has Leon had his meds yet?”

Ron answered “not yet!”, with a huff.

I sat down next to a very fidgety Leon and placed my hand on his shoulder, and reminded him to “Take a bite”, he did as I said as he yanked himself away from me. There was too much left on the table from the night before. I took a toy out of his hand, “BITE”, I reminded him again. He grabbed for the next closest thing as he took another bite. I held my hand out, and he knew to place it in my hand, which he did with a slap. It’s too early to correct his behavior right now, besides it would only escalate things. He started to reach for something else, but I got to it before he did; “take another bite”. “I AM!!!” he screamed.

I look at Ron and he answers my puzzled look with, “Did you leave out the fishing line last night?” as I watch him follow and collect the invisible string from all around the room, over chairs and in between chair legs and all around the table.

“I don’t think I did?” was my response. He tells me, “It is everywhere!”, he was NOT happy.

I grab Leon’s wrist as he tries to lunge for yet something else at the other end of the table, “EAT”, I say, and then, “Leon where did you get the fishing line?”

He  says “the drawer on your desk was open“.

I get up and check my desk drawer, which is indeed open and my eyes widen. I think, Oh Crap, and I say, “Leon what did you do with the glue?”, as I realize the lid had been removed from the container that I keep all my super strength glue hidden in.

“Nothing!” he says angrily, and then in response to my stern look, he said, “It doesn’t even work, it’s empty”. So I ask, “well what were you trying to glue?” and again in his angry voice he says, “Nothing, I was just trying to glue a bookmark into my book”, “but it didn’t even work the only thing that got glued was my fingers, but don’t worry I eventually got them unstuck.”;” Wow that must have been scary”, I said. His response was. “I was a little scared, ….at least now I know why they call it CRAZY glue”

I almost laughed, but I kept it in as I went into his room to survey it for any damage and I pick up the scissors on the floor. “so, what were you cutting?” I asked, as I looked for things with holes in it. When Leon gets a pair of scissors in his hands he loses all sence of reason. I worried that it was the bed sheets again or the clothes strewn across the floor. He casually said, “nothing, just my cards.”  I look on the floor, yep, there they were, all cut up into tiny little pieces.

I realize he is out of his seat and standing in his room with me, “Leon, did you finish your breakfast?” He runs back to the table, and starts to shovel the food in his mouth like a madman.

I should be correcting him, telling him to take smaller bites, and to sit in his seat instead of standing there leaning over the table. But I don’t, I just think to myself – eh, at least he’s staying in one place and eating. …and if he choke’s I am right here to do the Heimlich. Then I wonder to myself hmm, do I even now how to do the Heimlich?

Didn’t matter in the end. He was done in a flash and on his way.

I watched him, hop around on one foot and then another. He was worked up, but for no other reason than he just had to move. And move he did. And jump, and twist, and flail…

…and when I see him like this, I know, “he’s just getting his Flutterwackin on” ;

Yup it’s Leon in all his ADHDness, alright. And then some.

I try getting him back on track, and ready for school. He just lashes out! He’s angry, and frustrated, and the tears start to fall.

I get it. He feels like we are on top of him, smothering him, trying to control every action he makes… and the truth is, we are. We are because we have to. We are because if we don’t, it won’t get done. We are because at this very moment he just CAN’T. We are because it is a school day and we have to get him ready for his day, feed him, get him dressed, give him his meds and get him out the door and on the bus so he can have a good day at school. It sounds so simple but it’s not. It’s exhausting…. and a little sad.

The sadness comes after he’s gotten on the bus, it comes when all I can think is thank goodness that’s over (now I don’t have to deal with his ADHDness for at least another 7 hours).

The good thing is, neither does he or his teachers for that matter.

That’s when I realize it’s his teachers that always get to see him when he is at his very best.

After such an exhausting, stressful, anxiety provoking morning,that’s enough to make me jealous and then I think, Thank Goodness for weekends!

Picking up the Pieces

So my previous post was a bit DESPERATE, don’t you think?

I was in a pretty pathetic and desperate state of mind.

But today is another day and I’ve got some repairs to make.

I am happy to say I slept a good 10 hours that night. Something I definitely needed. Not napping created the crash and burn effect I needed to restart my clock. I’ve been eating better and taking my meds ON TIME, and at least TRYING to get on a better if not normal sleep schedule.

The morning after was tough and slow going. I had a very heavy patch of brain fog going on and it lasted quite a while too. But that was to be expected and I just made my way through it.

When life gets you down do you wanna know what you’ve gotta do? Just keep swimming. Just keep swimming. - Dory, ” Finding Nemo “

When I woke up the next morning, I decided to take a ME DAY!

…and now I am thinking maybe it’s more like a ME WEEK. ….or 2 ….ish.

I really need to pick up some pieces and get back on track. Because believe it or not I was somewhat on track. Really, I was! December went fairly well for me in terms of getting things done.

As the holidays approached, I was able to Christmas shop, get my house back together, decorate, and celebrate with family and friends, but not without the HUGE, HUGE, HUGE help I got from Ron. (…and Leon too). Thank you, my loves!

All the clutter found a home or else it went into the trash. We cleared away piles of stuff that we really did not need any longer. And while there was/is still more work to be done, we were able to make our living space, livable and our workspace, workable again.

We decorated the house and the beautiful Christmas tree that Ron and Leon went out and chopped down, during the Annual Oldfield Christmas Tree Hunt. The house was finally a warm and welcoming place again. Everything looked so beautiful and inviting. AND PEACEFUL.

The lights are my least favorite part of decorating the tree

Awww fiddlesticks - half the tree lights don't work

We spent Christmas Eve at home with our family, both Ron’s and mine came for dinner (17 of us in total). And the thing that amazed me the most about it was how relaxed I felt. Tired, but relaxed.  Finally!!!

I love taking out my china for the holidays, it makes me feel like I'm almost a grown-up.

Can you see the tree in the next room?

I realized it was because my house was full of the people I love and who love me, AND because Ron and I had put so much effort into putting order back into our home.

Santa Ron!

My Family

My loveys

Like mother, like daughter

She's waiting for Omi to cave, an hand over the chocolate.

You blow boy!!! In a good way!

The Angel and the Devil, but which is which?

Cheers!

Cheers!

Cousins!

Much of the week that followed Christmas, was spent relaxing in the glow of the Christmas lights, watching Leon play with all his new toys. We spent some time visiting with family, Leon got to go ice skating (can you imagine me on skates, HA!), and we took our traditional trip into NYC to see the tree in Rockefeller Center and check out the Christmas Window Displays.  We ended our winter break and the year at the home of a dear friend watching the Doctor Who marathon. It was a wonderful little staycation for all of us, and it certainly ended the year nicely.

Leon and like a third of Grandma's Christmas Village

Our Tree! The lights flying off to the side are actually being pulled by Santa in his sleigh and his 8 tiny reindeer.

Leon and his Christmas haul! It was a very Merry Skylander Christmas!

Now in the midst of all that activity, I had made one big mistake. I ran out of refills for my Cymbalta and kept forgetting to contact the doctor’s office. So for about a week-ish leading up to when I completely snapped (see previous post) I was off meds.  No wonder I had been such a WRECK! – DUH!

But NOW, I AM doing better,

So to those of you who reached out, THANK YOU! AND I LOVE YOU TOO!

I am feelin’ better, so no worries. But I need to take some ME TIME.

So…   I am not ignoring you. I am just under repairs,     ….and probably not answering the phone,    …or emails.

But I loves ya!!

Oh and Happy Christmas, Season’s Greetings and a Joyful New Year to all!

Crap! I think I’m broken again

Well, it is that time of year again, I guess…

I’m screwing  up again and I just don’t have time for it. I want this new year to be a year of change for the better!! So I have a plan to implement.

Being that I just spent about 15 minutes in the arms of  Kiera, my almost 4-year-old  niece, crying as she stroked my hair and wiped away my tears. I’d say I’m not getting off to the best of starts.

Then again, if I am going to have a nervous break down, there is no better person to be around than a little angel. And she is an Angel. (it’s a plus when that little angel doesn’t get a scare when seeing her Tante  Jiji fall to pieces.)

I haven’t been sleeping regularly. My nights are getting  later and later (or earlier and earlier, depending on how you look at it). In the last week I’ve gotten to bed at 4:30am, 4am, 2-ish …I think (I was proud of myself  for that one, after all I managed to get to bed early that night.) Then it was 4am again, and 5:30am and last night/this morning I went to bed at 6:30am. It’s not healthy, I know. What I don’t know is why I am like this.

It’s as if my life runs on a different clock than everyone else’s, everything is backwards. My days, find me excessively tired and exhausted, and my body seems to work against me. I hurt physically, which  for the most part I am used to being a problem. My fibro flares are definitely worsening with each new episode as time goes on. I don’t know if it’s an age thing or a female thing or just the normal course fibro takes. Personally I am convinced that I have MS, but no one else is. So I guess I must be wrong.

Mentally I feel so freaking scattered, confused, and somewhat lost. My memory is getting so bad; …scary bad, like I am going nuts, bad. I can’t seem to string my thoughts together, let alone complete a normal sentence or have a clear conversation with someone. Even writing this right now has been difficult, it’s taken me over an hour to get this far. my thoughts and emotions are all over the place, They all want to come out but some how they are all scrambled and tangled and stuck in my brain and driving me mad. My words have been coming out of my mouth all wrong, I want to say one thing but something else completely unrelated comes out. It’s called something, when that happens, but I cant remember what it is right now (HA!, go figure)

 –Google Search– Aphasia! that’s the word, Aphasia. Do I have aphasia? Hell if I know. I am not sure of what it is exactly I haven’t really researched it. And it’s probably best if I don’t…. 😉

During the day I feel as if I am just getting through it, one wobbly step at a time. I occasionally have spurts of ambitious thoughts of productivity, but they  seem to get squashed once I try to do something about it. I get too physically tired, too easily and abandon whatever it is I am trying to accomplish. Nothing ever gets done… , not completely anyway.

One of my changes for a better new year includes changing my sleeping habits for a happier healthier me. So the plan is to get to sleep before midnight and not staying up all night long. It sounds easy right? But it is not!! And like I said I really just don’t know why I am not sleeping?

I don’t know why my brain feels all foggy and dull and dimwitted and sleepy all day. And I don’t know why it starts itself up and runs at full throttle at night. It’s as if the dimmer control on the light bulb in my head gets turned all the way down during the day and then gets turned all the way up late at night. It’s as if, my brain is at its most active and productive stages in the evenings. Seriously I feel like I am at my widest awake at night when everyone else is going to bed. AND sometimes I actually end up getting things done. Whether it be doing some writing, organizing files on the computer and backing them up, archiving my photography, and readying them for display, researching my medical and neurological problems, researching ADHD, etc, etc, etc. I am actually doing these things well into the morning. But that’s not to say that I don’t goof off at other times too. There ARE nights that I will promise myself that when Ron heads to bed I will follow, but then when he heads to bed, I just can’t, I don’t feel tired and I know I won’t be able to sleep. So I inevitably  decide to watch just one more show. If I am not feelin’ what’s on the DVR, I will find something on Instant Netflix that I am interested in watching. I if it’s a movie, I may get to bed as early as 2:30 or 3am; but if I land on a new TV series that I want to begin watching I may get so caught up in the cliff hangers, and poor me without an ounce of will-power, will end up having to watch the next episode ..and the next one …and the next one …and so on, and so on, and so on. That’s kind of how I ended up being up till 6:30am this morning (by the way “United States of Tara” – excellent show!!). I do want to add that my lack of will power wasn’t the only reason I was up so late last night. I just COULD NOT sleep. Even at 6:30am – I got into bed, and I just laid there and laid there. And I felt like I was exploding on the inside. All I wanted to do was GO TO SLEEP. The voice in my head would just scream “Sleep already, SLEEP!!!” But I couldn’t and I was just so frustrated and angry; really angry. It was freakin’ 6:30am and I just could NOT sleep.

…….eventually,  I did doze off and slept in until 10am.

So here I am now with only a few hours of sleep, and I am a total mess. The tears just keep rolling and they are not stopping!!! I just want to make them stop! They are giving me a headache that just gets worse and worse with every tear shed. Everything is making me cry. Everything and nothing. To top it off , I’ve got the crazies; my skin is crawling and I just want to rip it off, I am jittery and nauseous and dizzy. I keep pulling at my clothes and my hair, I can’t sit still, I keep jumping up to look for something, but I don’t know what I am looking for, so I sit and I cry while I write, then I get up again and I pace, and then I do it all over again. I am just so tired.

Right now I could sleep, right now in the light of day I could just sleep.  But I REFUSE!! I can’t! I won’t!! I am fighting it. My lids are heavy and they want to close, but if I let myself, how will I ever get back to a normal sleep schedule.

I have been puposely depriving myself  and withholding my naps. That is my strategy for turning  my clock back to the right time zone. And that is a biggie for me. I LOVE my naps. I NEED my naps!! Really I do, especially given my complications with Fibro and the excess tiredness and fatigue I am constantly suffering  from. Naps are a natural and necessary part of my ordinary day, even when I am on a more realistic sleep schedule. But for the last week I’ve held back on the mid day naps so my sleep schedule can match the rest of the world’s. So here I am with a bad case of the crazies; and the tears just keep falling.

Yup, I am broken all right!

Please don’t ask me why or what’s wrong. I don’t know the answer to that and it will only make me cry more. That’s what was so great about having a little angel around. She stroked my hair and wiped my tears and said ” It’s okay Jiji; it will all be okay”, ” I will stay with you and hold your hand and I will be your friend”, “And then Uncle Ron will come home and hold your hand, and he will be your friend too.”  

…Okay, okay, so that did make me blubber all over the place too! But those were good tears. Unfortunately my Angel was picked up early today and I am left here to go cuckoo all on my own. It’s probably for the best though. I am arranging for Leon to be on a playdate right after school too!

ARRRGGH! More tears ….and not so much, the good kind this time.

Where are these tears coming from? Like I said I don’t know exactly, but there are a whole slew of possibilities ..or even the combination of a few or all of them. Probably the later. Lemme see, I am sleep deprived; depressed; in physical pain; menstruating; I am self sabotaging myself; I have temporarily fallen off of my meds (and my rocker too it seems); I still feel over-whelmed by life – which is not part of my new year’s plan; I have too much to get started and I don’t know what comes first; I forget to eat until I remember and then I eat the worst stuff on earth (i.e.. A whole bag of chips for dinner) so I am probably malnourished; I can’t think straight; I have trouble staying awake during the day (even when I am on a good sleep schedule); and there has been such sad news going on all around me lately; and, and, and I am just broken, really, really broken.

An acquaintance’s husband died on Dec 23 with no warning, leaving a wife, a 7-year-old son and 3-year-old twins and barely any money to make ends meet. My close friends, Heather and Eddie are going through hell trying to get answers as to why their sweet little boy keeps ending up in the hospital, most recently being in the ICU throughout the Christmas/New Year’s holiday. My mom’s sister, my Tante Angela, died this past Monday. And just today I found out that a classmate’s, of Leon’s, mom died on New Years Eve. We had met while the boys were in pre-school, she was such a nice person and a great mom. I always have such a hard time hearing about young children losing a parent. So yes, life has been a bummer lately and the news has been really, really sad. And did I mention the whole I am menstruating and therefore I am more hormonal and cry-ee than my usual self thing?

So yeah, I think I am broken. It is definitely not the first time (and probably not my last). Today was just the day I SNAPPED!

…it has taken me all freakin’ day to write this; emotional outbursts in private and all; so I am taking my evening medication and some Tylenol PM and I am getting into bed now and I am going to pray for sleep, and a tear free day tomorrow. Good night.

Today was the day I snapped and tomorrow is the day I will begin again, to fix it.

Today’s To Do’s

Find Christmas Lights and put them up

Get started on making the house more festive

Make a visible dent in the computer room (desk top and file cabinets)

Blog a bit

Put paperwork in order for Special Ed Meetings

Write note to teacher re: Leon’s checklists

Make returns to stores

Be happy with what I have accomplished today, and start again tomorrow.

 

 

I have so much I need to do. So, so much. So much that I have just been tripping myself up just thinking about it all the time.

This year has not been kind to me (that post is coming soon). It’s as if my life was involved in a 10  car pileup. One thing went wrong, then another, and another, and another, and so on. And detangling it all is a mess in itself. I would get so over whelmed with the enormity of it, that I would feel road-blocked and paralyzed to do anything. I just never knew where to start. Anything that I did start would be dependant on something else getting done first, and getting that done would also depend on another thing happening and so on and so on. I just did not know where to start.  So in the end I mostly ended up doing nothing and the pile-up would just keep getting bigger and bigger and bigger and so on. And there I was trapped somewhere in the middle of it all just getting more and more depressed over what a failure I am as a wife and mother and even at taking care of myself.

I’ve always been a list maker, and that has usually worked for me. But this year somewhere along the line I lost my way. I would get stuck on making the list and never actually get to the work truth was the lists wouldn’t be made up of 4 or 5 things to get done it would be 4 or 5 pages of things I still haven’t done. Eventually I just stopped making the lists all together, again because of the enormity of it all. I felt like I was failing at life.

At some point you can either give in and become a hoarder or you have to get a plan to get things done.

I had a plan to get a plan. But I  wasn’t sure what that plan was yet or even where to look.

I finally found one I want to give a go at, in a hot tub, at the base of Hunter Mountain, just a few weeks ago.

I was enjoying a soak in the tub with a few friends and a few drinks during my brother-in-law’s wedding weekend in the Catskills. We got to catch up with friends we hadn’t spent time with in a long time. The wedding was a blast and I walked away from that weekend with a new plan.

Melissa is the one who told me about a book I should look into. I was drunk that night so by morning the details were a bit hazy. But what I pieced together from our conversation was that it had something something something to do with seven somethings or other, in which you decide who you are, and who you want to be, and what you want to accomplish and then you assign a priority or a percentage of your time to it or something like that, …I think?

It went something like, what percentage of who I am is a wife, a mother, a blogger, PTA volunteer, crafter, etc… and then assign a percentage of your time to that part of you and work on a little bit of each part of who I am each day. So like if I am 50% homemaker and 25% crafter and 10% blogger, the time I give to each of those things should be divided accordingly. This way I can start making a dent by freeing myself up a little bit more each day in all the parts of my world that are important to me, including the parts that wants to do more than just clean house and chase after what I haven’t gotten to yet.

I was drunk at the time, so I could have gotten it all wrong but I did get something out of it that makes sense to me. At the time I thought she was referring to this book which I had read about previously (but I never actually read the book itself), and I had already put it on my universal wishlist.  I later learned via a Facebook convo with her that she actually meant this book, which also looks like a good read. I haven’t read either book as of yet, but they are both on my wishlist now and I do plan to read them when the avid reader in me jumps up to a higher priority in my life.

So while I am not following any specific magic formula as of yet on how to get things done, I was inspired by what I had learned from my friend to come up with a plan I could actually follow. For this plan I need to set priorities and assign a specific amount of time in my day to each of these priorities. And just get done what I can in the amount of time I give myself. And I also need to allow myself to be happy with what I have accomplished for the day and not wallow in the muck of what I still have to do, there is always tomorrow.

So, Melissa, if you are reading this, thanks for the info, and the kick in the pants to getting things done.

Now excuse me while I go look for the Christmas lights.

 

 

 

 

 

 

 

Nine Years Old and Already Breaking Hearts

A couple of days ago Leon came home from school and I could tell he wasn’t himself. Well not his, get off the bus and get the homework done right away, to get it out-of-the-way, so he can watch TV and play, self.

His ODD was in full force and rearing its ugly head. Everything was an argument or a fight, he asked for things he knew I would disagree to and then would have a huge fit when he would hear the word no. He lashed out, got fresh, and as a result he had to suffer the consequences of his actions. The consequences in this case being no video games for the rest of the day, including his newest addition to his collection; Skylanders.  He had just gotten it for his birthday the week before and was becoming obsessive about it. I felt he needed a break from it. Which he did. But the storm that came after that, resulted in a huge temper tantrum. There was yelling and crying, and screaming and runny noses, and soberly “i hate you’s”, and “i hate myself”, and “i just want to be left alone”, and screaming into pillows, and pinching and scratching at himself, and me grabbing a hold of him in my arms to cradle him and love him and keep him from physically hurting himself.

Phew! I see more and more of myself in this child every day! Memories and things long forgotten and tucked away in the far back of my mind. And now as I watch him go through so many of the things I went through in my own childhood (things that had made me feel “wrong”); and now to see him go through it, and not know how to deal with the intense emotions that come with it,  just kills me. I only hope that I can parlay my understanding and feelings to him based on what I have already gone through and cushion the blow even just a little. Let him know, he is NOT alone, there are others who understand, who get it, who have the same difficulties and differences.

This poor child carries the strain of always having to restrain and keep in check his natural ADHD impulses to do his own thing, his own way, while he is in school all day and for just long enough after school to get his homework done. The meds that he is on helps him to do that, and for all intense purposes work great, but some days are a bit more challenging than others. Sometimes the smallest monkey wrench puts a crimp in his day and throws him completely off course. It could be anything, maybe his schedule was unexpectedly interrupted, maybe he isn’t feeling well or maybe someone said or did something that he just can’t get off of his mind. What ever it is, it can cause the storm described above…

and below….

Leon: MOM! I am having a REALLY bad day! All I want is to come home and relax by playing my new game and you won’t even let me, And I am just really really stressed (pleading now, with tears running down his cheeks) PLEEEASE let me play with my Skylanders I just need to forget today happened!! Pleease!!! I DON’T WANT to go to fencing, I just want to RELAX!!! and I can’t do that if I can’t play my game!!

ME: (cradling my poor sobbing little boy whose trying desperately to sway me into changing my mind about taking away his video game privileges as a result of consequential behavior) I know you are upset, Leon. I am sorry that this hurts your feelings, but you know the rules if you get nasty with mommy you lose certain privileges and telling me you feel too sick to go fencing but just fine to play video games is not going to cut it.

Leon: I’m sooorrrrrry! I won’t do it again. Pllllllleeeeeeaaaassssseeee can I play my game. I had a bad day and besides I got some bad news at school and I am stressed about it! I just neeeeeeeeeed to playayayayay my GAME!

ME: What bad news? Do you want to tell me about it.

Leon: I just don’t want to talk about it OKAY!!! (screaming) Just let me PLAY!!!!!!

ME: eh, there is that tone again. (remaining as calm as any parent who just wants to strangle their beautiful child can)  Lets just try to stay calm and talk things out and we can see were we go from there.

Leon: If you knew this bad news you’d know why I am so stressed!

ME: So tell me about it

Leon: I don’t want to

ME: Okay you don’t have to tell me. But I am a little worried, can you tell me if it’s bad news about you?

Leon: no

ME: is a teacher involved?

Leon: no

Me: a friend?

Leon: yeah…

Me: did someone get hurt or sick?

Leon: no it’s not like that, it’s, it’s it’s just to horrible to say, I’ll write it down.

Me: (a little concerned now…. takes the folded up paper from his hand – reads his scribble and…..) (SMILE) Leon, is this what is upsetting you so much?

Leon: yes!

The note says: ” _________ has a crush on me! (It’s shocking!)”

ME: (inner voice) AWWWWW how freaking cute!!!!!!!!! (outer voice) This is flattering news, it should make you feel good about yourself. _____ is a very nice girl and she obviously has good taste. Don’t look at this as a bad thing, think of it as a good thing. I thought you liked ______.

Leon: I do! but I don’t want a crush, I want a friend!!!!

ME: All you have to do is just tell her that.

We talked a bit more about how he came to this knowledge….

Leon: Her friend came and told me, and then _____ said she was too embarrassed to tell me herself.

ME: what did you say?

Leon: nothing, I just fainted!

Ah the complexities of a fourth grader.

Today he came home in all smiles, we talked a bit before my bronchitis sent me back to sleep and he had a very nice evening playing with his dad.

I had asked him if he had spoken to ______. 

Leon: yeah, I told her that I didn’t feel the same way about her, and I asked her if we could still be friends. and she said yes.

Alls well that ends well!

I just hope ______  is okay! I mean who can blame her? My kid has always been a looker…… 

and he is an AMAZING KID to boot.

SCREAM!!!!!!!!!!!!

You scream, I scream, we all screeeeeam…

That’s it nothing else, we all just scream

SCREEEEEEEEEEEEEEEEEEEEAM!!!!!!!!!!!

Back when I was young, about a million trillion years ago, I had a small group of people I hung  out with in high school, and  we had a brilliant way of dealing with stress.

We would get in the car and drive down to the beach at top speed with all the windows down
and just SCREAM at the top of our lungs.

I can’t tell you how good that felt!! It was amazing!!

I long for a good long scream

I NEED a good long scream!!!

Anyone want to go have a scream with me?????

{ Just FYI – This scream was brought to you by the letters N-O-T & H-A-P-P-Y  and is courtesy of my first impression of the new school psychologist – which is condescending, major-interuptus-not-listen-to-us, and blechy)

“I LOVE my Feral little child.”

Early in the morning through bleary eyes, I peer out across the sun lit room at my child, and a grin slowly forms on my lips as I think to myself;

I LOVE my Feral little child.”

Sitting cross-legged on the floor wearing only his PJ bottoms, with his fuzzy blanket draped around him like an animal skin of sorts, with his long, wild and crazy hair all messed up and draped over his shoulders; he really does look like a feral child!!

He looked back at me, and I fully expected him to say “Me Leon, You Mommy, Me hunt and gather food, You wait here.” instead I got “Mooooom, I am huuuuungreeeeeey!” To which I replied, “Me Mommy, me tired, go now, ask your father to forage for food”; his reply … “you’re weird!”

Yes, yes I am!

I later opened up my laptop to look up the meaning behind “feral child” , I wanted to be sure I was thinking of the right word. Wikipedia not only spit out the meaning, but provided a picture in example as well:

Oh look!! It’s a picture of my very own sweet child!

It looks just like him!!!  At least I think it does.

It’s fitting though, and not just because he looks like a feral child with his hair all tangled, and mussed up, going in all different directions. But also, because he is a wild child at heart. And I mean that in the best possible way.

He certainly dances to the beat of his own drummer. As I’ve often maintained, he is a strong-willed child with a mind of his own, and once it is made up there is no changing it.

Such as it is with his long luscious locks, which I am happy to say, we have learned to tame (somewhat anyway).

He made up his mind to grow his hair long just short of 2 years ago in January of 2010, I remember the date because I blogged about it here.

It was late in January when he came home all excited about doing the Math-a-thon to raise money for St Jude Children’s’ Hospital and helping other kids his own age, who were sick with cancer. It was on that day that he asked if he could donate his hair to the kids at St. Judes. When we told him he would have to have a lot more hair than what had just recently grown out from his mohawk, he said he didn’t mind at all.

Leon in Disney sporting his blue mohawk

Leon's Hair as it was the day he came home and declared he was donating his hair to a kid like him with cancer

I also told him that it would probably take him a few years before he would have enough to donate. It didn’t phase him one bit. Both Ron and I  were pretty proud of him for wanting to do this, but we also thought it would not last. Boy were we wrong. It’s been two years and he still has an inch or two more to grow before he can donate it. Despite being picked on and teased in summer camp, and consistently being called a  girl by strangers, he is more determined than ever to reach his goal.

We’ve come a long way….

   He is such a beautiful child, it is no wonder strangers call him a girl

In the end it will be so worth it. And that long hair suits him, it suits his personality. And yes he does occasionally look like a feral child, possibly raised by monkeys. It was after all just yesterday that I caught my wild little child in the act of standing on his chair in the pizzeria attempting to swing on the lamp that hung above his table. But no matter how wild my little child gets or looks, he will always be MY little wild child!

“I LOVE my Feral little child.”

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!!!

It’s my party and I can run myself into the ground if I want too!!!!

With this year being as difficult as it has been, doing something I truly enjoy hasn’t been much of an option.

One of the things I really enjoy doing is planning something special and hosting parties for special occasions and holidays. Traditionally, we host big Christmas and Easter celebrations for our family of 17 every year with special extras like traditional Weinachts Teller and Easter Egg Scavenger Hunts, birthdays of course are also real big here, and I plan big too complete with banners, balloons, and birthday fairies. Then there are the smaller  holidays and events that I try to make fun and memorable, like New Years Eve where Leon gets to stay up late and bang pots and pans at midnight; Valentine’s Day where we decorate the windows and make heart cakes; St. Patty’s Day where Leon leaves out a decorated treasure box at night for the Leprechauns to fill with gold and greenery; the last day of school where we have a big get-together in our yard complete with wet and wild summer activities to welcome summer vacation; 4th of July BBQ, which Ron has been hosting for 20 + years; Halloween… etc… etc… etc..  .

But due to all my health issues this year, I just haven’t had it in me to make these special events happen, I even had to cancel Easter at the last minute this year because I was too, too sick to make it happen, and that is saying a lot. I was so incredibly disappointed in myself. And for as much as everyone reassured me that it wasn’t a big deal. It WAS a big deal to ME! I loooove hosting the holidays, it was a big letdown for me and I lost out on doing something that makes me happy doing it. Even the Leprechauns made a poor appearance this year because I just could not do it.

Leon always looks forward to the backyard party we have on the last day of school and I was not about to disappoint him or myself. I knew full well that I would pay for it in the end, and that it probably would end up being a bit too much for me, but there was no way I was not going to have our year end “Welcome Summer Party” for Leon and his friends (and for me and my friends too).

The invites went out, and the responses came in. As the date came closer I started to have some doubts. Every day has been a painful one for me at some point during the course of it. There was no reason to believe that this day was going to be any different. I wondered if I would make it through my own party without excusing myself to take a nap. I started begging Ron to take the day off so he could help me get through it (that was unfair of me I know).While he could not take the day off, he did go above and beyond in helping me turn this hoarders paradise back into a home.

Leon’s last day of school was a half day on June 25th. I spent the morning rushing around and breaking a sweat as I was working hard to get the yard ready for 20 + kids and 10 + moms; that I had absolutely no time to wallow in the pain.

It was a really great day, despite the threat of rain. The kids arrived with their moms and headed straight for the water slide, while us mom’s headed straight for the Coconut Pineapple Mohitos.

I didn’t get to sit in a chair for any good length of time with all the running around I had to choose to do. I had a bunch of fun summer activities planned.

While we waited for the rest of the guests to arrive, the kids jumped from pool to pool and discovered the big box of prefilled water squirters.

Once all the guests arrived we picked teams for the water balloon fight. The kids had a BLAST!

There where plenty of other activities for the kids as well.

Like jumping on the trampoline;

playing with Lego;

drawing with chalk;

 building a castle;

 huddling together in pop up tents;

and just all around having fun with good friends.

It was tons of work to put it all together and keep things rolling! By the time I finally able to really take a seat and relax; I was exhausted and in pain. The pricklies on my arms were feeling hot and hurtin, and my legs were heavy and aching pretty bad. As the party was winding down I was dreading the worst part of the party, and that is the clean up. All the work to get it together and only a few hours later it needs to all be broken down again. I was NOT up for it any more.

As luck would have it I have some really amazingly terrific friends!! Everyone just chipped in and helped put everything away in no time, despite my arguments to “just leave it”.  In a blink of an eye the pools were drained, the castle was boxed up, as was the Lego, the chairs were stacked by the garage and the dishes were done. I don’t know what I would have done without my good friends to help me.

And now here I am just days later and I am still paying for it. I may have spent the the last 2 days in bed, but it was definitely worth it to see this smiling face;

And hear him say “mom, thanks for inviting all my friends over and having a party; I had so much fun!”

Yup, it’s my party and I can run myself into the ground if I want to!

… Cause it’s worth it!

Fibro? MS? Or Something Else?

I made a list of the symptoms that I have been having over the last 6 months to reference, at my doctor visits. Some of these are symptoms I’ve had forever (which I have always attributed to my previously diagnosed Fibromyalgia); some I have had several times before but I didn’t realize there was a connection; and some are entirely new to me.

Basically I just want to find out what the Hell is wrong with me? Is it still Fibro? Could it be MS? Or Something Else?

Something is definitely very very wrong. A whole new wrong. A different wrong

The fact is I’ve been experiencing pain since before Christmas 2010 from what I assume stems from a winter triggered flare. This is what my year has been like

  • Have had major bouts of fatigue, tiredness, and energy loss since winter began
  • Feel poorly 80-90% of the time with very little relief in between
  • Been bed ridden – spent all of Jan and Feb either in bed or on the couch – not a day goes by since that I don’t need to rest between activities
  • Can’t do my normal every day activities – include watching my niece –interfering with my ability to earn a little money and help my sister out
  • Had sinus infection turn bronchial in Feb.-mar –it lasted 7 to 8 week duration
  • Am non functional for better part of day due fatigue, pain, and weakness
  • Weakness to the point of can’t lift simple things like a drink, or stand for even short period of time
  • Difficulties standing up straight in the mornings or after sitting for too long
  • Constantly feeling stiff
  • difficulty  walking- feel all crumpled up, stiff, crunchy
  • popping bones all over
  • difficulty lifting- too much pain in wrists, hands, fingers, and arms
  • same when required to use legs to lift
  • TOO weak, everything feels heavier
  • Difficulty focusing/ staying focused – lose train of thought,  can’t finish sentences, forget why in the room or what was just said
  • Can’t get organized, everything suffers, home family friends, life
  • Very Depressed, hopelessness, misunderstood, frequent and long crying jags
  •  Nausea, dizzy and sickly feeling
  • Headaches
  • Patches of prickles , like needles poking from inside out, on arms, neck, face

EXPERIANCING PAIN IN:

  • Hands & Fingers – feel swollen, can’t bend, or grasp. Skin gets too tight. COLD, blue finger tips (both but more intense in right), shake/unsteady, prickly, tingly
  • Wrists – no strength, feel like it’s going to crack right off, prickly , tingly, hot
  • Arms – aches, muscle burn, dead, feel heavy, prickly , tingly
  • Upper arm / shoulder – achy, heavy, prickly  , tingly
  • Neck – stiff, reduced movement, stabs of pain
  • Back of neck/head – stabbing pain out of nowhere sometimes brief sometimes not
  • Face – tingles/ prickles, pins & needles, numbness
  • Lower back- weak cant straighten up, can’t sit long, can’t stand long
  • Legs /thighs – ache, feel dead inside, feel heavy, muscle burn, soreness, stiff, numbness
  • Knees – stiff, feels sand or gravel packed
  • Calves – cramping, sore, tight
  • Ankles – stiff , especially in the morning
  • Skin – prickly, tingly, painful

FATIGUE, FATIGUE, FATIGUE!!!!

  • Have NO energy
  • Fine one moment and not the next
  • Meer walk from couch to bathroom wipes me out
  • Feels like gravity is pulling me down
  • Sudden urgent needs to sit/rest
  • Simple tasks feel like full on workouts – i.e. Walk to kitchen feels like full on hike; doing dishes feels like weight lifting; writing/drawing feels like just did pull-ups
  • Break a sweat just going from one room to next
  • My brain wants to get things done but body wont/cant co-operate
  • Once rested I feel okay and able until I try to do something
  • Even typing wears me out

OTHER PROBS:

  • Forever forgetful – can’t retain or remember info
  • Incontinence – pee when laugh, cough, sneeze, lift, get up too fast, sound of water, see running water, get close to bathroom
  • TMJ – tightness in jaw, wake up clenched, pain
  • INSOMNIA/SLEEP DISRUPTION – cannot get to sleep, pain wakes me up/ keeps me awake, sudden jerking motion, can’t stop moving, can’t turn off body or brain
  • Depression – thoughts of worthlessness, death, long can’t stop crying jags
  • Temperature control – too too cold! Freezing! causes pain OR too too hot, can’t function, need to sit, rest, sleep; difficult finding happy medium
  •  Headaches – migraines, tension, stress, allergy
  • Get dizzy, feelings of vertigo, nausea. Worry I might faint if I don’t sit
  • Eyes get fuzzy, darkness over one eye (left) like it’s shaded or looking through a screen
  • Spend more time feeling bad in a day than I do feeling good.
  • Feel like I am getting no reprieve.

Post Navigation

%d bloggers like this: