Just call me Jiji

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

Archive for the tag “friends”

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.

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And So It Begins….

7:00pm

Telephone -(ring, ring)….                                   
Me: Hello?
Little Girl Voice: Hi, Can I talk to Leon?       
Me: Sure who’s calling?
Little Girl Voice: This is Samantha
Me: Okay Hold on a sec.
Samantha: ok
Leon: Hello?
Samantha:Hi    (….yes I was listening in)
Leon:   Hi (….trying to hide his grin)
Samantha: What are you doing?
Leon: Um, playing Monopoly with my dad
Samantha: Oh, okay I’ll let you go play monopoly
Leon: Wait, why did you call?
Samantha: I just wanted to say Hi
Leon: Hi
Samantha: Hi
………(silence)……..
Leon:  Okay, I guess I’ll see you tomorrow   
Samantha: Okay, bye
Leon: bye (GRIN)
Click

ME:  (suppressed smile)  

Voices in my head:  O-M-G!!!!! How freakin cute!!!!! Leon got his first phone call from a girl!!!! (SQUEEEEEEAL!!!!)

Leon certainly lit up when he heard her voice.  Could it be???? …..Puppy Love???  – tee hee……

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!

Dear Santa,

 

Dear Santa,

I have been very, very good this year!

I spent much of my time this year helping out friends and family, planning weddings and parties, taking care of other people’s children and my own, being a personal shopper, researching everything from ADHD to Las Vegas weddings to Sensory Processing Disorder, driving my kid all over town to swimming, and guitar lessons, and cub scouts; correcting homework, volunteering in the PTA, and so, so, so much more.  So for Christmas this year I’d like to ask for a bit more time in each day to just regroup and take a moment just for me.

I also joined Jenny Craig this year and lost 40 lbs, and even though I gained back 10lbs of it, I think that’s still pretty good. So I would also like to ask for a bit more will-power so I can lose another 40+ lbs. And if you could manage it, some calorie free, fat free, soft serve ice cream that doesn’t taste like air or cost an arm and a leg would be GREAT!

But the thing I’d most like to see by the tree this Christmas, is my family happily thriving, and enjoying each other and this wonderful life that God has given us.  

                                                                               Love,

                                                                                   Jill xoxo

P.S. Do you prefer whole milk or skim with your cookies?  

My Superpower is Invisibility

When people pick the power of invisibility as the superpower they would most like to have, I am dumbfounded!

I am dumbfounded because I have that power and it really sucks!

I have invisible disabilities.

For those of you who are new to the term;  invisible disabilities ,as defined by the Invisible Disabilities Association (IDA), refers to such symptoms as debilitating pain, fatigue, dizziness, weakness, cognitive dysfunctions and mental disorders, as well as hearing and vision impairments.  These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations and vary from person to person.

Someone can have invisible disabilities whether or not they also have a visible impairment or use an assistive device such as a wheelchair, walker or cane. For example, whether or not a person utilizes an assistive device, if they are debilitated by such symptoms as described above, they have invisible disabilities.  (click What is an Invisible Disability?  for more).

My invisible disabilities include every one of the symptoms mentioned above. And it sucks. BIG TIME!  Especially when they hit me all at once.

But wait, there is more…

There are other symptoms that are not mentioned….

..Feelings of incompetency, self-loathing, worthlessness, loneliness, guilt, frustration; feelings of being forever misunderstood, and more…

Those are currently, my additional symptoms, at least.

I seem to be going through something right now. I don’t know what it is exactly, but something is happening to me. I have been “OFF” for the lack of a better word, for a few weeks, longer even; it’s just that it seems to be all rushing at me at a faster pace now.

I’ve been having these feelings of being out of control.

.. Out of control of my life – my health, both mentally and physically, my routines, my emotions, my daily living even. I feel as if I am not functioning properly or normally at all anymore.

My standard go to has always been… “Oh it must be my fibro”; “after all it is the change of seasons”; and “don’t I always have a tough time transitioning at this time of year when things get so busy?”  (-yes that is me talking to myself)

But this is different. Something is different – yet strangely familiar.

One of my major complaints is how I a have been increasingly and incredibly more forgetful; I mean scary forgetful. In the last 2 months, I can point to several instances ~ like making plans with a friend to meet up and then forgetting about it within the hour, having an important meeting scheduled in my own home, with Leon’s behavioral therapist and answering the door in my pajamas because I completely forgot about it, even though I had just confirmed it the night before, having whole phone conversations with someone and forgetting that I spoke to them, taking my meds and then forgetting if I did or not (..okay so that’s and old one), going to my doctor –to discuss this very problem, as well as get the flu shot, and at the end of the appointment when he says okay; “ now go downstairs to the lab, for the blood tests and I will call you with the results”, I respond with, “okay, is that where I will get my flu shot as well?”, and he responds, “Jill, I just gave you the flu shot, you have a band-aid right there on your arm, don’t you remember?” …..umm no, no I didn’t remember. That it just one example of how I am forgetting, from one moment to the next.

Then there are the days were I really just can’t get my act together. One little thing happens and I am thrown off all together. Last week I spent an hour looking for a sippy cup that had the very last drop of milk in it for Kiera. No exaggeration, I was running around the house like a chicken without a head, looking for this damn sippy cup that I had just poured, which in the end turned up in the crib with her, yet I don’t remember ever giving it to her. And while I am crazily looking for the cup I am doing a million other things, or at least I am trying to. My fatigue has been increasing too lately, so while in the mitts of trying to get things done I have to sit or lie down and rest my body and my addled brain, every so often. I just can’t seem to focus on any one task. I am all over the place, so much so that I finally remember to take my medicine, and it’s not until after I throw them to the back of my throat and just start to pour the water into my mouth that it dawns on me that –whoa, whoa, whoa, wait a minute, something doesn’t feel right; were those my pills that I just popped into my mouth? Or were they Leon’s?  Pa-Tooey I spit them out and sure enough they were Leon’s. Crap! Instead of taking my two cymbalta and one lyrica, I almost swallowed two concerta and one clonodine –SCARY!!!

And somehow stuff like this keeps happening, not as serious – or as dangerous as all that, but concerning none the less.

I go through my days feeling all discombobulated and completely out of sync. Nothing seems to fit right.  

So what is it? Is it the fibro getting worse with age? Is it hormones? Am I premenstrual? IS IT ADHD…? Is it all of the above?

The more info I get on my son’s disorder the more insight I am getting about myself! This is not unusual by any means. I see in Leon all the things that I did and went through as a child (only without the right tools or coping mechanisms); I see and relive the frustration of it all. When I say I know how he feels, I really, really do. I see so much of me in him, and I see so much of his ADHD in me, then and now. –AHA! So THAT explains it!

  These feelings of incompetency that I have been feeling lately are not all together new either. They feel like growing pains. Growing pains that I felt back in high school.

I’ve been feeling that A LOT lately.

These old feelings of being incompetent or like I’m a “Fuck up”, which was my choice of words back then, like I just cannot fit in no matter what I do, like I just never ever can get anything right, like people think I am a complete ditz because I can never really retain any info or because I forget things a lot (like make plans and then get sidetracked too easily or forget them all together). My lack of ability to train my focus on one thing makes me look careless and scatterbrained, messy even. I can’t get it together enough to keep a clean house without clutter everywhere you look. I feel stupid, and awkward and like my life is not my own, I am not in control of it.

I can look back and say, that while some of those feelings, back then, were your standard run of the mill growing pains, but most of them were and is ADHD.

My blood tests showed no Lyme disease, low vitamin D, and some other medical gibberish that I didn’t understand, basically they are normal. It ruled out other possibilities and I am now being treated for ADHD with Strattera.  Well, in theory anyway, I’ve been putting off starting it because the side effects are scary ugly and I want to do it at a time when I don’t have a lot of ‘other’ things going on and I can deal with them more easily. –yeah good luck with that.

What does all this have to do with invisible disabilities?

Both Fibromyalgia and ADHD are invisible to the naked eye. You cannot look at me and see that I have these dysfunctions. When I am in pain you can’t see it. When I can’t concentrate on the words coming from your mouth you can’t see it. When I am feeling weak or fatigued you can’t see it.   

And with that, the invisibility of it all also comes those feelings. Feelings of incompetency, self-loathing, worthlessness, loneliness, frustration; emotionally instability; feelings of being forever misunderstood, and feelings of guilt.

They affect my mood, my relationships, and my ability to function “normally” out in the world and at home.

Out in the world – I worry about my relationships with my friends, especially the newer ones. What do they see? What do they think? With all these changes that I seem to be going through right now is it easier to just step away from me? – Can you tell I am feeling a little insecure?

I know my lifelong friend and family will always be around no matter how cuckoo I get. But lately I feel as if some of my other friends might be withdrawing. It is probably just my imagination.  But I have felt more left out as of late –Ahh, feels High School all over again

With  majority of my friendships being with women of girls, it is only natural that they get together more often with their girls and Leon being a boy isn’t invited and therefore I don’t get spend that time out with my friends either. They talk openly about their plans, and I enjoy hearing about what’s going on with the kids. But I’d be lying if I said I don’t feel a bit of envy. Especially when plans are made without the kids, and I am not even asked.  It’s really not a big deal, normally this type of thing really would not bother me, but I am not feeling all that normal right not – at least not what is normal for me anyway. I am just feeling very self conscious – more so lately because, as I am feeling more and more out of sync, I just know I must be coming across as flighty and unreliable and lazy.  Face it my life is becoming this huge mess and I can’t seem to get it together enough to clean it up. If my inability to pull myself together because of my fibro and ADHD is being misinterpreted as me just being a loser, then it’s no wonder I feel misunderstood, and lonely. It’s no wonder that I feel like a loser.

At home – my house is never clean, there is always clutter everywhere, and boxes, always boxes. Storage boxes, for The Kids Kloset, Halloween, presents to be wrapped, decorations to be put up, decorations to be put away, old photos to sort, etc, etc. There always seem to be a parade of boxes in and out of the house, and always smack dab in the middle of my kitchen. We get rid of one and the next one comes in. It’s ugly and it’s messy, and always in the way. Worse than boxes is the paper work, papers everywhere – some in boxes even that I just can’t get to. I feel as if I just can’t keep up with any of it. By the end of the day I am too spent to cook, or pack up the day, or even talk; breathing is the most I can handle.

 Ron tells me it’s because I have too many things going on, like taking care of Leon, the babysitting, PTA volunteering, and getting ready for the holidays or some other project.

I am a mom, I take care of my child, we have our challenges of course, but every parent faces challenges, whether it be chauffeuring them from one activity to another or from one therapy session to another; I babysit, that is my job, that is how I make my money, it helps us afford some of the little (very little) extras in our lives; I volunteer with the PTA, it keeps me connected to Leon’s school and gives me a social outlet; and getting ready for the holidays (or any other event whether it be a trip or preparing for the consignment sale) is just some of the little extras that come with life to make it more interesting and enjoyable.

But seriously does that sound like a lot? It doesn’t, it sounds like normal everyday life to me, no more, and no less than what any other normal person might do in their life, right?

Here’s the rub – I am not like any other ‘normal’ person. I look like one; I walk and talk, like one. I even act like one. But what you don’t see is what is invisible. You don’t see the pain throbbing in my legs as I stand there talking to you, or in my arms as I try to carry an empty trash can back to the house, or my hands that look perfectly plain on the outside, but feel so swollen on the inside that I sometimes wonder if they might not just burst open one day. You don’t see the fatigue that forces me to sit or lay down every 20 or so minutes the evening or the day after I’ve had a ‘good’ day of pushing it all aside to do ‘normal’.  You don’t see that even though I am smiling and laughing, and enjoying myself, I still feel the pain in my limbs that can only be described as shards of glass traveling through my veins. You don’t see how confused and foggy I get because the buzzing of the light and the ticking of the clock are louder than anything else going on so whatever it is that you are saying  to me is going in one ear and out the other. You don’t see what is invisible.

What you do see is this person that can’t seem to get it together.  Is she lazy? Is she a slob? Is she a scatterbrained? Is she unreliable? Is she stupid? …

Nope but she is feeling a little invisible right now.

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!

To All My Favorite M.O.M.M.’s

HAPPY MOTHER’S DAY to all my favorite M.O.M.M.’s 

You are all; 

  • Makers
  • Of
  • Miracles and
  • Memories

You are all Super Women; who have touched me, taught me, inspired me, and helped to shape who I have been, who I am, and who I will become as a girl, a daughter, a woman, a friend, a wife, a mother and as a person! 

I dedicate this page to you; 

 

 

From SuburbanPediatrics.org : 

Attention “Super-Moms” It’s O.K. to…

 

Often, as parents we are tired! Frazzled by never-ending obligations, we sometimes neglect to fully engage with our kids. Try to enjoy the little parenting moments as they happen. 

  • It’s OK to have a messy house sometimes.
  • It’s OK to get a sitter and go out.
  • It’s OK to stay home with the kids — watch a movie or play a game!
  • It’s OK to make cookies this year from frozen Pillsbury dough instead of homemade.
  • It’s OK to sit in the warm car at the park while you watch your older kids go sledding.
  • It’s OK to re-gift — its green!
  • It’s OK to give your kids less gifts … they will appreciate them more.
  • It’s OK to say NO without giving a reason!
  • It’s OK to order pizza 3 times this week because life is busy — and the kids will actually eat it!
  • It’s OK to go to a party with baby spit-up on your shoulder and down your back.
  • It’s OK to let the kids have a little extra TV, computer or game time if it helps keep you sane.
  • It’s OK to let go of the parenting guilt! We all do our best.
  • It’s OK to not be perfect!

  

 

From The Unemployed Mom Blog

What Does A SAHM Do?

by The Unemployed Mom on 06/10/09 at 3:32 pm I find it amusing that some people think a Stay At Home Mom (SAHM) does nothing all day long. While we may not have a written job description, we do have a very important obligation which is taking care of our children. My blog title “The Unemployed Mom” is a complete oxymoron, which is typically why I receive laughs when people hear it. Anyway, I wanted to share a few thoughts about being a SAHM and let people know more about what we do. 

  1.  Being a SAHM doesn’t start at 8 am and end at 5 pm like a typical job. Our children dictate when our day begins and when it ends.
  2. Overtime occurs regularly, yet we do not get paid time and a half. We are compensated with hugs and kisses which is far more rewarding. Of course, we do receive our share of unpleasant compensation too (diaper blowouts, fussy kids, food spills, bathroom blunders, wet beds, tantrums, etc.).
  3. We do not receive vacation or sick time and must fulfill our duties 24/7, 365 days a year! No, we do not get weekends off either!
  4. We have a big responsibility which is trying to set the right example for our children and being the perfect role model. This can be challenging at times if we are frustrated or dealing with real world issues.
  5. A SAHM has mastered the art of multi-tasking! We are able to focus on many things at once but still keep our child’s safety and interests at the top of the list!
  6. We do not have one whining boss to answer to, we have our significant other AND our children!
  7. A SAHM is also a teacher, day care provider, guidance counselor, taxi driver, photographer, CEO, nutritionist, chef, laundry attendant, maid, accountant, janitor, entertainer, nurse, party planner, personal stylist, administrative assistant and a baker. Keep in mind, we are not compensated…but imagine what our salary SHOULD be with these responsibilities!
  8. We are extremely flexible! Our goal may be to complete our to-do list; however, our children dictate what our day actually consists of. Some days are extremely laid back while others are complete chaos. We must “go with the flow” and make the best of it, even if that means not accomplishing what we planned to.
  9. Being a SAHM is exhausting, there is never a dull moment! Some evenings, I am ready to fall asleep before my toddler goes to bed!
  10. We love our children dearly; however, staying home with a fussy or sick child can be draining! We do need a break once in a while, even if it is just to take a quiet walk alone to clear our minds. When our significant other arrives home, we do not need to hear “why do you need a break, you stay home all day”!  I challenge any person who asks this infuriating question to stay home alone with their child for just one day…I am pretty confident they will beg to return to their regular job!

I have held a variety of professional positions and being a SAHM is by far the job I am most proud of (and as mentioned above, it is one of the most exhausting)! My child is only little once and I feel blessed to share every single day with him. 

 The next time someone says a SAHM doesn’t do much, please direct them to this blog! 

FROM Mom.Salary.com 

If paid, the typical Stay-at-Home Mom in Hicksville, NY would earn the pay shown below for her work as a mother.

 Earning Statement  
For the year ending: May 2010
Job title Hourly Rate Hours worked
Housekeeper $11.10 728
Cook $14.73 364
Day Care Center Teacher $14.73 1,040
Facilities Manager $35.13 520
Computer Operator $17.15 624
Van Driver $16.72 364
Psychologist $42.12 624
Janitor $10.89 416
Laundry Machine Operator $11.16 0
Chief Executive Officer $56.63 260
Staff Nurse – RN $31.66 208
Event Planner $29.30 312
Nutritionist $25.95 208
Logistics Analyst $24.85 364
Interior Designer $20.78 156
Bookkeeper $18.91 104
Administrative Assistant $18.52 208
Plumber $18.19 0
General Maintenance Worker $15.56 208
Groundskeeper $13.86 52
Total Value
Regular Hourly Rate $22.56 2,080 $46,934
Over Time Rate $33.85 4,680 $158,402

$205,336

WHAT I OWE MY MOTHER
(Momisms)

My mother taught me TO APPRECIATE A JOB WELL DONE.If you’re going to kill each other, do it  outside.  I just finished cleaning.” 

My mother  taught me RELIGION. 
You better pray that will come out of the carpet.”

 My mother taught me about TIME TRAVEL. “If you don’t straighten up, I’m going to knock you into the middle of next week!”

My  mother taught me LOGIC.  
Because I said so, that’s  why.”

My mother taught me MORE  LOGIC. 
If you fall out of that swing and break your  neck, you’re not going to the store with me.”

My mother taught me FORESIGHT.  
Make sure you wear clean underwear in case you’re in an accident.”

My  mother taught me IRONY.  
Keep crying, and I’ll give you something to cry about.”

My mother taught me about the science of OSMOSIS.  
Shut your mouth and eat your supper.”

My mother taught me about CONTORTIONISM.  
Will you look at that dirt on the back of your neck!”

My mother taught me about STAMINA.    
You’ll sit there until all that spinach is gone.”

My mother taught me about WEATHER.    
This room of yours looks as if a tornado went through it.”

My mother taught me about  HYPOCRISY.   
 “If I told you once, I’ve told you a million times. Don’t exaggerate!”

My mother taught me the CIRCLE OF LIFE. 
“I brought you into this world, and I can take you out.”

My mother taught me about ANTICIPATION. 
Just wait until we get home.”

My mother taught me MEDICAL SCIENCE. 
If you don’t stop crossing  your eyes, they are going to freeze that way.”

My mother taught me HUMOR. 
When that lawn mower cuts off your toes, don’t come running to me.”

My mother taught me GENETICS. 
You’re just like your father.”

My mother taught me about my ROOTS. 
Shut  that door behind you.  Do you think you were born in a barn?”

My mother taught me WISDOM. 
When you get to be my age, you’ll understand.”

My Mother taught me ESP. 
“Put your sweater on; don’t you think that I know when you’re cold?”

My Mother taught me TO MEET A CHALLENGE. 
“What were you thinking?  Answer me when I talk to you… Don’t talk back to me!”

MY Mother taught me PATIENCE.  
“Sure, you can do that. As soon as you’re 21 and leave the house!”

My Mother taught me DIPLOMACY. 
“I don’t want to hear who started it, It takes two to fight.”

My Mother taught me SHARING. 
“Play nicely with that or I’ll just take it away from both of you.”

My Mother taught me ETIQUETTE.  
“Use your fork! If I see that hand on the table again, I’ll slap it!”

My mother taught me about ENVY.
“There are millions of less fortunate children in this world who don’t have wonderful parents like you do.”

My mother taught me about RECEIVING.
“You are going to get it when you get home!”

My mother taught me TO THINK AHEAD. 
“If you don’t pass your spelling test, you’ll never get a good job!”

My mother taught me HOW TO BECOME AN ADULT.
“If you don’t eat your vegetables, you’ll never grow up.”

My mother taught  me about JUSTICE. 
One day you’ll have kids and I hope they turn out just like you!”

But most of all, my mother taught me LOVE. 
“You know that whatever you do or whatever happens, I’ll always stand behind you, no matter what; because I love you.”

-Unknown

Dedicated to; Erika Fitzgerald, Jeanette Fitzgerald, Kathi Buss, Celia Vera, Jennifer Fitzgerald, Sheila Streng, Anne Oldfield,  Heather Hodkinson, Ana Thompson, Donna Ganiaris, Gerri Lima, Allison Schaefer, Kim Baitz, Angela Kobetitsch, Lynne Wiltse, Penny Williams, and so many other moms who have touched my life in one way or another.

Fibro sucks EVERYDAY…

… because it hurts, EVERYDAY!.

Some days are more tolerable than others, and some days are just outright excruciating.

 A GOOD DAY is just a dull and annoying pain that is always with you.

A BAD DAY is rather dying than moving, or talking, or thinking, or even breathing because all of it hurts.

What Are the Symptoms of Fibromyalgia?

Symptoms of fibromyalgia include:

…because it is invisible EVERYDAY, even though I am not.

On most days I look fine, but I just can not function well enough to match the image. I often feel as if I have to explain myself , and the explanation is most often Fibromyalgia. 

 Often there are the days that I just don’t bother, I don’t bother to dress, I don’t bother to do my hair or put make-up on, I don’t bother to make myself presentable, because I might look too healthy for the way I am feeling.

…because EVERYDAY, the productive part of my day just dwindles away.

Fibromyalgia symptoms intensify depending on the time of day — morning, late afternoon, and evening tend to be the worst times, while 11 a.m. to 3 p.m. tends to be the best time for most sufferers. For me this is very true, so what it boils down to is I basically have a small 4 hour window of active productability each day. No wonder I can never get things done. And I complain of life getting in the way of life.

…because even the people who are the closest to me EVERYDAY, will never fully understand what it really feels like or means to have Fibromyalgia.

They know I have it, but I always have it. For them it is the same old, same old… you are sick, you are tired, you are hurting, etc, etc.

But for me it is never the same, it is never the same old, same old… What makes one day or one moment different from the next? Only the degree of pain and how well I can handle it and what comes with it. Sometimes I even find myself surprised at how bad I am feeling, because I hadn’t felt this bad in a while or because I never thought it could get as bad as this to begin with. Some times I just get so frustrated with the fact that they just don’t understand the pain and the difficulties that come with Fibro. Yet at the same time I don’t really want them to because the only way to ever truly understand is to have it. And I wish that on no one.

…because my Fibro doesn’t just affect me, it effects everyone around me, EVERYDAY.

My wonderful husband and terrific son get the brunt of it.

Ron all too often has to pick up the pieces, when I can’t function in just ordinary daily living. Mornings are terrible for me because I wake up stiff and in pain. It usually takes me 2 to 3 hours to bring the pain down to a more manageable level and to shake off the fatigue from having a restless night or no sleep at all, until just before it is time to get up and get going. So he has to help with Leon each morning, (schoolbag packed, lunch made, meds given, and ADHD boy whose meds have not yet kicked in, dressed and entertained until the bus comes), so I can stumble out of my bed, trying to get my act together to immediately begin my day taking care of my soon to be 2-year-old niece at 7am. And all this from a man, who, even with my Fibro, is less of a morning person than I am. He then works all day and has to come home to pick up even more pieces.

By the time 4pm hits I am done. Working from home, taking care of an infant (Nico-8 months) and my extremely rambunctious niece (Kiera-23months) is more than exhausting. Believe it or not changing Kiera’s diapers can be very physically painful for me, what with all the flailing and kicking and chasing that goes on – :?. And keeping up with the house while keeping up with the kids is an excercise in futility. As soon as one child is fed, the next one needs to be fed; as soon as one diaper is changed another one has to be changed; as soon as one set of dishes are done, there are more in the sink; as soon as one toy is cleaned up, a new one magically appears scattered across the floor. Then 4pm rolls around and that’s when all the poop hits the fan at once. I often talk about this being a bad time for Leon, with his ADHD and all the commotion that comes to a head all at the same time, but it is just as bad for me as it is for him (sometimes worse depending on the day). Leon gets off the bus, like a tornado, backpack, lunchbox, books, papers, shoes, various pieces of clothing and a whole slew of questions all flying around at once, at the same time the babies get picked up one after another, and I am trying to hold down some semblance of an organized and structured enviroment for Leon to get on with his homework while dodging “can I PLEEEZ  have a playdate today” questions. It gets quite overwhelming. And depending on how bad I am flaring this is where poor Leon gets the brunt of it. The pain of having to say “No, not today baby, Mommy doesn’t feel good” or “Sorry Leon, mommy is hurting too much to play with you right now” or “go get your DS and sit in bed with me while mommy lies down for a bit”, hurts sooo much more than the actual physical pain of fibromyalgia! I hate letting him down all the time! I hate letting them both down. By the time Ron gets home, I still haven’t been able to completely clean up the house, do the dishes, or make dinner. It’s not for the lack of trying, I do try but I never seem to be able to complete the jobs. So guess who steps in and picks up the pieces? Ron of course. 

…because it makes me look and feel: like a burden, lazy, messy, unorganized, disconnected, ditzy, unreliable, inconsistent, forgetful, whiney, selfish, moody,   (..I could go on and  on) EVERYDAY

  I worry all too often that I am a burden to my family, specifically Ron, who has to make up for what I am lacking as a housewife and mom. And to Leon whose mom can’t just be like other moms.

I am always disgusted and embarrassed by how disorganized and messy my house is. It is all too common to see things piled up all over the place, from papers, to dishes, to piles of clothing or toys. I often lack the strength, the time,  or the energy to keep up with the house, let alone my own appearance.

I dress comfortably (sweats and t-shirt comfortable) and rarely style my hair or do my make-up. Especially when I am really hurting – fibro is invisible enough to look too good to be sick.

I often feel that people perceive me as being very lazy because I just can’t get myself started on a new task and because once I do start one, I never seem to be able to complete it; or because Ron steps in so much to pick up my slack. 

I worry that people see me as being ditzy or dumb, because my “fibro fog” prevents me from being able concentrate or even to finish a sentence properly. I have been known to lose a word mid-sentence, I know what I mean to say but it just wont come out. It also causes me to consistently forget things. (appointments, phone numbers, where the car is, dates, commitments I have made.

I must seem incredibly inconsistent and unreliable to anyone around me, between forgetting things so easily or having to bail out and cancel plans or appointments last-minute due to an unexpected flare-up or my forgetfulness even. 

While I often have the urge to explain why I am the way I am, I worry about talking about my pain and other symptoms for fear that someone might brand me a complainer or a hypochondriac, or say I am using my fibro as an excuse

I tend to get very moody because of the pain, I become very crotchety, and selfish even, because I am so consumed and lost in my pain that I forget to think about how others may be feeling and what they may be going through.

…because the pain changes, EVERYDAY.

The pain changes as quickly and as often as the variables do. 

Fatigue; tension; inactivity; changes in the weather (rain, snow, heat, humidity); extreme temperature; cold or drafty conditions; overexertion; hormonal fluctuations; sensitivity to odors, noise, bright lights, medications, and certain foods; stress; depression; or other emotional factors.

All these things will affect my fibro and to what degree I will feel it and be able to function.

…because Fibro is a vicious cycle, EVERYDAY.

These are the cycles that I tend to fall into:

Vicious Cycle of Non-restorative Sleep

Both FMS and CFS disrupt sleep quality.  Poor sleep, in turn, worsens physical and mental stamina.  Poor sleep also increases sensitivity to pain.  These, of course, further disrupt sleep.  

Vicious Cycle of Inactivity Leading to Progressive Loss of Physical Fitness (De-conditioning)

People with FMS and CFS feel too ill to exercise, and if they push they get worse.  However, not exercising at all is also a mistake.  With inactivity, fitness fades.  This increases vulnerability (i.e. it takes less and less exertion before you push over your limits).  This leads to less activity, which, in turn, leads to lower blood pressure and blood volume. Blood sugar becomes unstable.  Disruptive stress hormones increase, (e.g. adrenalin and cortisone).  People feel worse, so they can do even less.  And the cycle repeats.

Vicious Cycle of Mind/Body Tension

Feeling bad for so long makes people “tighten up”, both literally in their muscles and figuratively in their mind.  Muscle tension increases pain and stiffness.  Mental tension creates feelings of anxiety, and a sense of not being in control.  This causes more physical and mental tension, reinforcing the illness. This is one reason that people with Fibromyalgia are more likely to suffer from migraine or tension headaches. When headache pain is bad, this also tends to make Fibromyalgia worse.

Vicious Cycle of Losing Perspective, Losing Hope

People who are chronically ill tend to lose optimism and also their sense of perspective and proportion. Small set backs feel like catastrophes.  Dips feel like forever.  Anger suppresses immune function.  They may lose hope and stop trying.  This heavy burden adds to the illness.

 …because I have to push myself EVERYDAY.

Obviously when I am feeling bad I have to push through the pain just to get through the day.

But sometimes even harder than that, are the days that I am feeling good and I have to push myself to accomplish as much as I can while I’ve got it in me to do it. Time is of the essence for me because I have so little of it. I tend to be a such a perfectionist and an over-archiver, because I may only have one chance to get it right, I never know how long I have till I fall apart again. I set my standards for myself pretty high because I feel the need to make up for lost time, and for my short-comings. I’ve been told that I tend to go above and beyond for certain things, when it isn’t really necessary. But it is for me, I push myself when I can because I need to feel that sense of completion and accomplishment. And probably because I also need to feel the praise that comes with those things that I do go above and beyond for because fibro can bring me way, way down, I need to be proud of something.

SO THERE!!!

New Year’s Resolutions Big and Small

WELCOME to 2010!!

It’s a New Year! A time of new beginnings right?

Time for New Year’s Resolutions big and small.

Each year around this time, you hear mutterings about starting over and/or beginning again.

Not from me, not this year. I don’t want to start over or begin again.

I have just one small New Year’s Resolution:

I just want to keep doing what I am doing, only better!!!

Each month, each week, each day, each hour, and each minute.

From taking care of my family, and my home; to taking care of myself, body and soul. From staying organized; to just surviving the stress and chaos of life. From planning well in advance; to flying by the seat of my pants and being absolutely spontaneous. From being thrifty and sensible when I need to be; to being frivolous and splurging on the more enjoyable things in life when I can. From remembering the past and where I’ve come from, and embracing the future and where I want to be tomorrow; to living for today and just for today. From living my life beautifully and gratefully; to ageing gracefully under the pressure and pain of fibromyalgia. From prioritizing what’s important; to takeing things as they come.

This year, I resolve keep the highs, high and the lows to a minimum.

To take each moment in as it comes and try to make it better than the last.

To live my life beautifully and gratefully

   ……Just one small New Year’s Resolution! …

and the beauty of it all is that I can’t fail, all I have to do is take life by the balls and live it well!

**********************************************************

I was not the only one with a New Year’s Resolution for 2010 in this household…

Leon’s great big 2010 New Year’s Resolution is to learn to tie his shoelaces,

       …and to ride a two-wheeler this year.

            ………oh yeah, and something in there about learning to drive.

For Leon, learning to tie his shoes, is no small feat given his difficulties in OT with fine motor skillsupper extremity weakness, and decreased proximal stability leading to decreased distal mobility.

(yeah, I had trouble with the big words too, that’s why I included links)

When he made up his mind to start practicing on the 1st of January, I figured it would take some time, a few weeks, maybe longer. We have had a lot of false starts in the past, leading to many tears, tantrums, and frustration. I just figured that with the invention of velcro, there was never a need to push him into it.

We gave him new sneakers with laces, on the 1st, for him to practice on. We tried to help him and show him how to tie it snuggly so the shoes would not fall off or the laces come untied. He just did NOT want to hear it. He had to do it his way, on his own, by himself.

He became so hyper-focused on it … that I was sure that he would give up.

   …..I was wrong, this was him on January 2nd!

  

TA-DA!!!!!!!

 They aren’t perfect, they keep coming undone, or they fall off because it’s too loose. But they are tied!!!!

I have no doubt that Leon will be two wheeling it as soon as the weather warms up!!! 

Just goes to show….

    …….that when it comes to Leon,

it has to be in his time and his way, because when he sets his mind to something, look out! 

-(Thank you ADHD!).

Now excuse me, while I go and hide my car keys!!!

Has it been a year???

Yup, and so much has happened. I haven’t kept up with this blog as well as I would have liked – You know, the whole “Life, getting in the way of life” thing…

As previously posted I plan to improve on that!  I feel as if I’ve left some ends dangling…

One of which has been Leon’s story. I’ve gone on and on about it, good and bad, but mostly bad.

So I wanted to make the time to talk about the wonderful progress we have made.

Here goes:

I am so very, very PROUD of my little man!!! He has been doing so much better!

Better in school, at home, and with his friends. Better in life!

I was so apprehensive about the new school year, but so far 2nd grade has been a breeze. And as much as I give credit to the new meds, that alone is not what has made the difference.

Not only did Leon made Santa’s List –

 “http://family.go.com/santas-list/video/86271-leonsmom/” 

 …but the principal’s too!!!!!

Here is a little background:

After having such a rough year in 1st grade, least not of which was a 6-year-old Leon leaving the school during recess undetected and walking all the way home by himself, the school quickly realized it would be in their best interest (and Leon’s of course) to re-evaluate their position. Afterall they denied him the 504 plan and refused to classify him the first time around (Oct 2008). After a long summer of waiting to find out what the school would be doing to assure his success this year (and hopefully for the years to come), I received the call the day before we were to leave on our 2 week vacation to Disney, a meeting was finalized for the day after we planned to be back. I spent much of my vacation on the phone with Dr. E. Petrosky and a Special Education attorney by the name of Brad Rosken because something that the director of the CSE said just did not sit well with me. When I had inquired about a parent member being at the meeting, she told me that, it was unnecessary as they would not be classifying him, and that this was to be his 504 meeting.

WHAT!?!?!? NOT CLASSIFYING HIM? WHAT???? 

I was very disturbed by this, after all not only did our doctor, Dr. Petrosky, recommend that he be classified but so did the Psychiatrist that they had sent Leon to, to be evaluated by. Dr. Petrosky is the one who contacted the attorney on our behalf because he felt that the school and CSE were not following due process. First of all the decision on what will be done with Leon is to be made by the entire CSE team, and as his parents, we are part of that team, so the decision to classify him or not, can NOT be made prior to the actual CSE meeting of which we must be a part of. Secondly they were calling for a 504 meeting when what we had requested was a CSE meeting. I was so worried that they were going to screw us and that we would have to borrow money to hire the attorney. Initially I wanted to reschedule the meeting so we could bone up for the fight I was expecting, but in the end the attorney suggested that we go to the meeting and just hear them out. If they were going to give Leon everything we wanted for him as recommended by the doctors who evaluated him, under a 504 plan than there would be no sense in rocking the boat, but if they were going to deny certain essential services then we should ask for an impartial hearing. We decided to follow his advice, and boy were we pleasantly surprised! Leon got so many of the recommended services that we have nothing to complain about. The only thing that I am still confused about to this day, is that with all the services that he was given, why then isn’t he classified? I mean anyone who knows anything about this and has read the final decision has said that it is written up exactly like an IEP yet because he isn’t classified it isn’t and can’t be an IEP. Friends who work with special needs kids have all said that I need to question why he isn’t classified, given all the services that he was given, but I am at the point where I just don’t want to rock the boat. He is getting exactly what he needs and that’s what’s important. I just hope he will continue to get what he needs…

As per his 504 Plan he has a BIP (Behavioral Intervention Plan) in place, a TA to accompany him to his ‘specials’ (ie gym, music, art, lunch, recess) and to help him stay on track in the classroom, he sees an OT once a week, and gets weekly counseling with the school psychologist, and in 2010 he starts social skills group every other week. He is in an inclusion class, which is wonderful because there are always at least two teachers in the classroom at a time, which is great for keeping Leon redirected when necessary. My most favorite thing about his whole school situation this year is not a thing but a person. Ms. Kelly, his teacher happens to have been a school psychologist, prior to becoming a teacher. Her love of the classroom prompted the unusual career change, and I gotta say I am so thankful for that. She is a wonderful teacher. She gets Leon, and she doesn’t fall for any of his shenanigans. She can see 10 steps ahead and cut him off at the pass. Because of this, life in 2nd grade is grand. I barely hear a peep from the school unless it’s about another PTA committee that I could not just say no to.

As for the meds he is currently on, Leon has been taking Concerta and Clonodine since Aug ’09 and they seem to work very well in helping him to control his ADHD. He puts more thought into things before doing them and he has mellowed out and isn’t bouncing off the walls every moment of the day, he is a new and improved Leon on them. But I do worry about the side effects. I really have to watch what he eats, or better said, I have to make sure that he does eat, he’s a stringbean to begin with, so the loss of appetite thing is a bit worrisome.  I used to have the opposite problem of him having a bottomless pit for a stomach, and hearing “Mooom, I’m hungry!” every five minutes. But now getting him to eat is a task and a half.  Then there are the mood swings. He can go from 0 to 60 (and back) in a matter of seconds. The side effects aside I am very, very, happy with his medicine regime. It has made a HUGE difference in his life (and mine too).

Between the meds and all of the accommodations in school and at home, the difference to his life knows no bounds.

In school, he does so well behaviorally, that Ms. Kelly and Mrs. Novick, the school psychologist, were hard pressed to find many behavioral issues from this 2009-2010 school year to base the BIP on. They based it mostly on the issues of the last school year. I give a lot of the credit to all the accommodations and services that are in place for him in school. Having such an intuitive teacher and a bunch of TA’s following him around certainly reminds him enough to stay on his toes. At our parent-teacher meeting in early December, Ms. Kelly let us know that academically he was doing fine. The only real issues were related to her being unable to read his writing and some of his test scores reflect that. Normally he gets over 100% including the bonus question, but the lowest grade he’s gotten so far was 60% in spelling because it was complete scribble. The answers were correct mind you, but it just was not legible. Other mistakes occur too, resulting in some lower grades in the 80’s and 90’s, as a result of his not taking the time to listen to the directions prior to starting the work, or his rushing through the work (often out of boredom and/or a fear of not being able to do it correctly – in other words, it’s too easy, so forget it and let’s just get it over with -or- it’s too hard, so forget it and let’s just get it over with). He ends up making very careless yet avoidable mistakes. Leon is still Leon afterall, he’s still always in a rush to get to the next thing, he’s just gotten a lot better at handling that -but improvement is still necessary.  As someone who did very poorly in school and was just happy to get a barely passing grade, I am very pleased with Leon’s grades. Even the 60 on his spelling test; I think it serves as a good lesson for Leon.

His report card, which was AMAZING, reflected all of this. The difference between last year’s report cards and this year’s is more than remarkable. It’s like he’s a different kid. He received mostly 4’s (meeting learning standards with distinction) and 3’s (meeting learning standards) with only a few 2’s (partially meeting learning standards) in only two areas. Whereas last year there were 2’s all over the his report card in several areas. The two area’s that he needs improvement in, are; “English Language Arts-Writing” where he received a 2 for ‘Writes legibly’ which he is working on in OT, and “Development of Learner Behaviors that Support Academic Progress” where his 2’s where for; Accepts suggestions for improvement, Follows directions, Organizes work space and materials, Demonstrates pride in the quality of work, and Approaches learning experiences prepared with necessary materials. Even the less structured areas like Art, Music, and Gym produced all 3’s and 4’s which was unheard of last year. I am more than pleased with Leon’s report card and all of his wonderful progress.

Behaviorally Ms. Kelly said that “While Leon still has his moments where his emotions get the better of him, for the most part he really is no problem at all, he is such a good kid that she wishes she had 10 of him in her classroom”.  

Ummmm? TEN Leons??? Really??? Are you sure you are talking about my kid????.

I’m kidding of course, but there was a time when that comment would have really shocked me. Now… not so much! He has grown into such an easy, pleasant child to be around. And by that, I mean not a “difficult child” to be around. He has grown and matured so much. Don’t get me wrong, he still has his moments. Boy! Does he ever, it’s like I said, Leon is still Leon, but now those moments come fewer and farther between. 

At home, life although still quite hectic and very chaotic, is more at peace now, if that makes any sense at all. He still gets very “emotional” about things, he still has yet to identify his emotions and learn to react to them appropriately. He still has his melt downs, and they do get quite explosive (perhaps even more so than before) possibly because of his meds, and possibly because like I said those moments come fewer and farther between, so when they come, they are BIG. Still, we are managing better.

So many things deserve credit for the changes we’ve seen . The meds help, of course; the absence of “reports of bad behavior” and the presence of constant “recognition for terrific behavior” from the school helps; the services and accommodations put in place under the 504 Plan at school help; the increased pride and new confidence in himself helps; and among so many other things that are intertwined and connected with it all; love being at the very tippy top of it; understanding helps.

Ours, his, and theirs. We; Ron and I, are doing so much better at handling the slip-ups, the outbursts, the emotional break downs, and the everyday-everything of it all (both Leon’s and our’s) because we understand so much more now. We make accommodations for him, for his ADHD. We run the house differently, we prep for “the next thing” differently, we talk to him and each other differently, we focus more on the positive and dwell less on the negative now, all because we better understand the nature of Leon, and his, …and this is important, HIS individual ADHD/ODD, differently. I stress individual because no two people with ADHD are exactly the same. similar yes, the same no. Leon, himself also understands. I feel Leon has such a better handle on himself this year as compared to last year because of his own understanding of ADHD, as much as a newly turned 7-year-old can understand it, that is. And because he understands that while he can’t control that he has ADHD/ODD (Attention Deficit Hyperactivity Disorder/Oppositional Defiance Disorder) he CAN control how he deals with it, things are that much better.

Leon has learned to put more thought into what he does now before he does it. He has learned to stop himself a bit better before his impulses take control. For the most part anyway, we do still have some of the “what were you thinking?” moments of the old days. But even that gets handled differently now because we are more understanding and accommodating.

Like when I discovered several wads of gum stuffed between the cushions of our couch and loveseats just a couple of weeks ago. Granted, the “what were you thinking?” award really goes to my mom who bought Leon a huge tower of gum balls in varying sizes (the large ones being the size of Leon’s fist) in the first place. But Leon got the runner-up reward, for sneaking them, then hiding them in between the cushions, and then lying about them when presented with the evidence.

 

I am not a huge fan of gum, but I do know that gum can actually be good for you – as it can help in the increase of concentration, and help prevent cavities, provided it is the RIGHT type of gum (specifically, sugarless gum). I knew that when he opened them as a birthday gift that there would be trouble. My instinct to take them away and hide them was right, buuut it was a gift from my mom for his birthday and it would not be right to keep it from him.

(Although I have to say ‘blatant disrespect of my wishes and rules for my child’ isn’t right either!) – sorry had to rant.

Rather than keep them from him, we came to an understanding, Leon asked me to trust him, and I agreed, so long as he followed the rules, (the same rules I have always had), which are; You must ask and have permission before you have one, you must wrap it in paper when you are done, and you must show mom that you are throwing it out properly. Yes, yes, I know, some what redundant and annoyingly controlling however, this is what I mean by accommodations. In the end when all was said and done, and Leon fessed up to it, things were calm and rational and fair. We didn’t yell and scream, although I was/am pretty upset about it. We discussed it and dealt him the punishment calmly. Leon didn’t cry or have a fit over it, (okay there were tears but he was trying to hold them back)he knew there were consequences and accepted them. I was actually quite pleased with how well everything went down. And all because we are understanding more and more each day about ourselves, each other, and his ADHD.

Socially, Leon is doing so much better as well. He has developed more meaningful relationships over the past year. He interacts with them so much better than he used to. His understanding of give and take has become more refined. And he gets more involved with the person rather than just the activity. He has a ‘best friend’ named Jason, who he gets along very well with. Personally I LOVE them together. For one thing, Jason is always a pleasure to have around, he is polite and kind, and always on his best behavior, and this rubs off on Leon. They both enjoy the same things; Disney, Star Wars, Lego’s, Stitch, Pokemon, and of course video games. They play very well together and don’t rile each other up too much, if at all. But the thing I personally enjoy the most about this pairing is Jason’s mother. She is a wonderfully caring person. We parent very similarly, she’s a great mom and a very good friend. Definitely a plus in my book. The behavioral specialist who observes Leon in class twice a month, tells me that he plays very well with him and another boy in particular at recess. I am glad that he does not focus all his attention on just one friend, else he might get hurt. As with any friendship there will be ups and downs. Just a few weeks ago Leon was upset because Jason did not like him anymore (he said that Leon was too annoying, and that he talked too much). I can’t blame the kid, it’s true! After a talking about it with him, I realized Leon was taking it so much better than he would have last year. His solution was “that’s okay, cause Nick still likes me, maybe Jason just needs a break from me”. And, based on the playdate they just had I would say he was right.

My biggest regret for Leon socially, is that I can’t get him and his friends together more often. He craves the company of other kids his age so badly and between my issues with my fibromyalgia and my working from home it makes things more difficult to provide him with that on a regular basis. Being an only child certainly does not help either. At least having a sibling around would alleviate some of the boredom and loneliness. Kiera my niece, who is here 5 days a week does help a bit, but there is a 5 year age difference between them, so it isn’t the same.

We are very lucky to have a few neighbors with children ranging in ages from 6 to 12 all around us. Luckier still that I have been able to become good friends with them. Leon plays a lot with Jackie and her sister in particular. Not only is she our neighbor but she is also in Leon’s class. I do have to admit that their friendship while not forced, has more to do with convenience of proximity and the fact that her mother and I have developed a very close friendship that extends beyond our kids. It makes me laugh because Leon has clarified that even though he plays with her a lot she isn’t his best friend because she is a girl. 

So beyond the “normal” social awkwardness of childhood friendships, Leon seems to be doing a lot better socially than he did a year ago when he so wanted to be friends with anyone and everyone just to be around other kids, but other kids could care less if he was there or not. I consider it a very marked improvement, when other children are actually asking him for playdates as well.

So there you have it. When it comes to Leon, Life is Good!!

I am excited and hopeful for his future… but a bit nervous too.

…with the Section 504 Committee scheduled to meet next week to review Leon’s educational services, I can’t help but be a little bit nervous. I worry that they may take it all away (or even just some of it) because he has done so well, rather than recognize that keeping the services in place is the key to keeping things going well.

ADHD/ODD is a lifelong neurological disability, full of unexpected highs and lows. I will always do everything in my power to make sure Leon has only a few bumps in the road on his journey though life.

Here is to keeping the highs, high and the lows to a minimum!!!

Just a Quicky!

Been up to my ears in activity!!

I haven’t had time to breathe let alone blog about whats been going on. It seems everyday there is something to do. It’s life getting in the way of life. Today is just another really busy day, but I thought I would stop to take a quick breath and jot down a quicky blog post.

Boy this summer sure went fast! It started with crummy rain storm after rain storm, leaving us wondering when it would actually start to feel like summer. When the weather finally improved and summer activities could truely be enjoyed, we were busy with day camp, and summer festivals, days at the local pool, camping in PA with Leon’s grandparents, and of course all the regular ole’ daily grind stuff.

Camp ended last week just in time to remind me that “Oh crap, summer is almost over and I am not even ready for that!!”  

There are :

5 weeks till the Kids Kloset Consignment Sale – which I haven’t even started to prep for yet. Nothing like waiting till the very last minute. But I am hoping the $$$ I make will be enough to plan the next Disney trip — yes I am Disney Addicted

25 days till I start caring for my good friend’s 5 month old Nico – a new baby in the house!! Yay! I just hope Kiera and Leon feel the same.  I am thrilled about this. Not only am I helping a friend out, she is helping me out more than she knows. When I stopped watching V it put a huge dent in our finances and fueled quite a few arguments about money between Ron and I. After catching up from being so far behind in debt, we really don’t want to slide back into them again. PLUS – Nico really is the cutest baby ever (after Leon that is, of course!)

18 days till school starts -EEEEK! I mean YAY! I mean EeeeeeeeK! — yeah I have some mixed emotions about this, BIG TIME!  I worry so much about how this year will go for Leon. And I know the first few weeks will be busy just getting into the swing of things, I will have a CSE meeting to look forward to or to fear, I don’t know which yet. And to top it all off Leon just started a new medication today. Here’s hoping he tolerates it well!! I’ve got mixed emotions about this too.

8 days till we leave for Disney – I can not wait!! I still have so, so, so, much more to do before we go – packing, tie-dyeing, costume making, crafting, and more…

1 Day till our weekend in PA camping trip – I’ll admit, don’t love camping , but I do love getting together with family and makeing memories. It reminds me so much of my childhood with my grandparents and Aunt Kathi and Uncle John. GREAT MEMORIES! I am so grateful that Leon gets to make such wonderful memories.

2 hours till Leon’s “Almost 7” Birthday Party – decided on and planned at the very very very last minute – 5 days ago to be exact- because Leon “really really really wants a pool party and not just a boring party at home” – I think I am offended at that.  After all I am: “Da Mom!!” I throw the BEST birthday parties! Seriously if I were to start a buisness, that would be it!  Theme Parties are my specialty. I’ll have to share some pics of past parties some time.

But right now I have to get Leon’s Almost 7, Lilo and StitchStitchcopy Luau Pool Party packed up to go set up at the local pool. Fun, fun, fun!!

So much to do… so little time

tinkerbellkitchenBusy, busy, busy…

I feel as if I am always busy, always trying to accomplish something, finish something, start something, organize something, or clean something. Yet none of it ever seems to get done?

There are the things I don’t really want to do, but I have to do; like cleaning up the house, and grocery shopping. I am very very lucky in that Ron helps out around the house A LOT. I mean A LOT, a lot! And for that I am very, very grateful but I often feel guilty, embarrassed even. I love that he is so good to me and helps me out so much because of my Fibro, but sometimes I secretly wish he wouldn’t talk about it so openly to everyone else. Like when someone calls and asks what he’s up to and rattles off a list of household chores that he is planning on doing. Granted he is doing it to alleviate me and keep me from doing so much that I get a bad flare-up. But not everyone remembers that. I am the SAHM, I am the one who is supposed to be taking care of the household while he brings home the bacon, (although I do bring in some bacon). So I try to keep up with the house as much as I can on a daily basis. I hate when he gets home from a long day at work and sees the house is a mess and feels he has to clean it up even when I insist he leaves it because I will get to it.

It seems I just can’t ever get it all done. Having my 18 month old niece (whom I babysit on a daily basis) running around undoing everything I do gets exhausting. I feel like I am never, never done cleaning. It seems like while I am busy cleaning up one mess she is busy making another. My day pretty much consists of me sweeping up after her 2 or 3 times a day (she’s got a good arm, I’ve seen her fling chicken clear into the next room); mopping up spills, feeding her, changing diapers, picking up her toys over and over and over  again, all while trying to keep her entertained at the same time. By the time I am finally done and ready to hand her over to her mom, it’s time to pick Leon up from camp. Now my attention is turned to him. Given his ADHD and his need for things to be just so and for immediate gratification, life gets even more demanding and exhausting. I am his mom, his playmate, his personal chef, his maid, his sounding board, and his entertainer. By the time Ron gets home there’s a new mess to clean up and I am exhausted mentally and physically. With all the running around I do all day I end up with nothing to show for it. I HATE THAT!

Then there are the things I need to do but have a hard time accomplishing it. Like finding a good doctor for Leon to manage his ADHD/ODD meds that won’t cost us a fortune. This week alone I have spent about 6 hours on the phone between doctors and insurance, and CSE just trying to get what Leon needs. And I still have NOTHING to show for it. I need to find a child psychiatrist that works with children with ADHD/ODD and takes my insurance. I also want to get Leon in a social skills class. That should not be too much to ask, right?. Wrong. I started with calling MDs that were recommended to me by other MDs and parents of children with ADHD. That didn’t work. Then I called the insurance company and got a list of names. Most of the doctors are too far away, or don’t take my insurance anymore and the rest have yet to return my phone call. All that time and aggravation and still nothing! The MDs that come so highly recommended and don’t take my insurance or any insurance are unbelievably expensive. One quoted $675 for the first initial visit and $190 for every once a month visit there after. The one that CSE was helpful enough to recommend is in Manhattan and would give me a discounted rate of $200 (instead of $400) per visit –  Add the commute by train or gas and tolls, not to mention travel tome – it’s a steal! NOT!!! My insurance will cover 80% of what they consider  is reasonable and customary for out of network costs but only after we meet an additional$2300 out of network deductable.  So given the options the next step is to find a neurologist in network that has knowledge of children with ADHD. Hopefully this will go better.

I also feel I need to find a way to make more money. The obvious choice would be to get a job, but I already have a job – two in fact. my #1 job is as Leonsmom. Being a mom is an extremely hard yet fulfilling job. Being a mom to a child with special needs, a child who is disabled is a bit harder (and still equally fulfilling). My second job is helping my sister out by providing childcare for my niece (and for those of you who know me well and know my sister – you all know how difficult that can be).  Up until recently I was providing childcare to another little girl. But that ended in May around the time Leon was having so much difficulty with his ADHD. At the time I was fine with her leaving because I really needed to focus on Leon and what was going on with him. But now that things have settled a bit, we are really feeling a loss of that income. Idealy I would like to find another child to care for but I want to wait till school starts for that. In the meantime I want to find a way to earn some money for the little extras we want to do this summer like camping and waterparks and cub scout activities and our trip to Disney at the end of next month. The trip itself is all paid for already (less than $100 a day for all 3 of us including tickets, airfare, and hotel – can’t beat that!) but we still have to eat. Some things I’d like to do in the hopes of making some extra money is have a garage sale, collect empty cans for deposits, and create tie dye Mickey shirts to sell. I just don’t know where to find the time?  

Lastly are the things that I want to do, but just can’t seem to start, or if I do start them I just can’t seem to finish ’em. For lack of time, or funds, or talent, or whatever. Like have the garage sale or make the tie dye mickey shirts (not just to sell but for our trip as well). I also want to create some iron on designs for our trip.I want to find time to actually sit down and plan out our Disney trip and what we are going to do there. I want to put together an ADHD binder, with all the information that I have collected about this disorder and how it pertains to Leon. I also want to write up a detailed history of Leon’s ADHD in a handout that I can just give to whatever new doctor will be treating him. Something I can keep updated through out his life for whatever come up. I want to put my pictures together and make scrapbooks rather than just leave them in my computer.  Additionally I want to find time to blog. I want to blog about how well Leon is doing since being completely off the Zoloft, and about how our summer is going and the camping trip we just took, and my plans for Disney, I want to blog about the results of Leon’s assessment with the amazing Dr. Petrosky, and my hopes (and fears) for our CSE meeting. right now I am using Kiera’s nap to write this instead of making calls or cleaning 😦    And I want to do so so much more……

I have to…,

                       I need to…,

                                                 I want to…

                                                                   …but when???

 

There is some GOOD news. Ron and Leon are going to be away for the weekend on a Cub Scout camping trip, and I will be home all by my lonesome. I can not wait!! I plan to unplug the phone, blast the music, dance in my underwear, paint my nails, and oh yeah, one or two of the things listed above 🙂

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