Just call me Jiji

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

Archive for the tag “impulsive”

“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.”

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I think I may be part Hedgehog

I just figured out something new in the world of; whatever the
frak is wrong with me.

When I get agitated, frustrated, or upset my quills come out. At
least that’s what it feels like,

…only my quills aren’t fine little hairs that stand on end. My
quills are invisible and feel like really long sharp needles attached to nerve
endings that are slowly trying to make their way out from under my skin.

I know sounds horrible; imagine how it feels!

I’ve come to this conclusion based on the day’s activities and the
reaction it caused.

Hubby’s insurance plan is a real sucky one! We have a $2,400 detuctable
that we need to meet at the beginning of each year for our in-network service
plan. We are generally broke for the first 3 months of the year, because all
our money goes to the insurance company for all the meds Leon and I take on a
daily basis.

Well if that isn’t bad enough, our insurance plan demands another
$2,4oo for any Out-of-Network services. So why don’t we stay in network?
Because we can’t find a damn In-network doctor to see us. And by us I mean Leon
and I.

Leon needs a therapist, as well as a social skills group. I have
found two doctors that come very highly recommended, BUT… they are of course
Out-of-Network. Then there is me. Woe is me.

At my doctor visit yesterday with my primary care doctor, I was
advised to seek psychiatric care…. oh and here is a new prescription for even
more meds. In case anyone is keeping score that’s 10 pills a day. As my friend
Kim said “my mom doesn’t even take that many”

It’s frustrating; however, the advice isn’t wrong. I think getting
psychiatric help would be a plus, providing I can find one that I am
comfortable with. I think I definitely do need to speak with a therapist to
help me untangle this life that seems to have gotten completely out of control,
and if that person can also help me reduce the amount of medication I am taking
that would be excellent.

So today I printed out the list of in-network doctors that are in
a 10 mile radius. I was on a roll, and getting things done today. I was pretty
proud of myself for not putting it off. It was time to do some research, I hate
the idea of randomly picking out a doctor that is going to be picking my brain
and telling me who I am, from a list. I much prefer to have a recommendation
from a friend or a referral from a doctor. Unfortunately I am the only crazy
person among my friends so no help there, and as for doctor referrals… well
let’s just say that apparently none of the “good” doctors take my
insurance. So it was between me and the computer to decide who I would choose. Unfortunately
the computer was no help AT ALL! I was hoping to find some reviews on the
doctors on the list to help me choose. Ummmm, Yea, No!

As the time passed and I hit road block after road block I got
more and more frustrated. I called doc after doc after doc, and I was getting
nowhere. Some numbers on the list where wrong, some were fax machines, some had
terribly rude receptionists, one receptionist asked me why I needed to see the
doctor, and when I said, “depression…….and some issues with ADHD, I
guess”; her response was, “Oh, he doesn’t treat that”

What? What the what? Okeeeee…. moving on. One only specialized
in substance abuse, another in geriatrics (I was too young, go figure), one
doctor whom I was actually able to find a review on, now practices two states
over; and then there was the one with whom I spoke to directly, and it wasn’t
until I gave him every last detail about me that he realized I was calling
about his practice in the county that I live in rather than a neighboring one.
Unfortunately he isn’t seeing new patients in my county. I also skipped around
on the list, picking and choosing friendly names. Silly, I know but the names
were all I had to go on and well, I don’t know how to say this without sounding
a bit prejudice, which I am soooo not, so I’ll just say it very plainly as, I
prefer the doctor with whom I am going to spend a lot of time communicating
with, to have english as their first language. No disrespect intended but if I
can’t understand the accent how can they help me? So I skipped quite a few
names until they were all that was left.

Four hours later, I still haven’t found a doctor and I am hurting
and uncomfortable and realizing that these weird pins and needles/prickling
thing was getting worse the more I agonized over finding a damn doctor. And it
isn’t just pins and needles, its worse; it’s like a million needles trying to
escape my body all at once. In my arms, my hands, my cheeks, my lips, and on
the back of my neck.

So yeah I think I may be part hedgehog. Don’t they get all sharp
and prickly when they are agitated??

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!

I will not play with fire…I will not play with fire…I will no…

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Hoo Boy!! My worst fear is Leon becoming extra ordinarily attracted to fire! It satisfies the need for instant gratification and shows lack of impulse control. Fire is highly attractive to many with ADHD, like a moth to a flame, and just as dangerous.

Last night our little moth got caught up in the flame.

It was my fault completely and I take the blame and the shame that comes with it. I feel like a terrible, terrible mom for letting my guard down, especially since I should have known better.

I had received a beautiful candle from a good friend on Halloween, and I wanted to enjoy it. Being that Leon was contentedly occupied on his computer, I felt it was safe to light it in the living room, after all he was two whole rooms away. My huge mistake was not listening to my first instinct to blowing it out as soon as he went into the livingroom to watch TV. I had planned on doing just that, but he stopped me and very sweetly asked that I leave it on, because he liked the way it made the room feel. He asked me to trust him.

Ah, TRUST. My very mature nearly eight year old child wants me to trust him, I want to trust him, but not only is he a child but he is a child with ADHD. That is a hard one. I believe strongly in letting him develop his independence, so when he asks me to trust him, I want to show him that I believe in him, I want him to feel trusted. But because of his inability to control his impulses without the right parameters in place. Trust is not and should not be doled out unconditionally. Additionally trust is something that is earned and must be maintained. I believe that Leon’s ADHD adds a bit of difficulty to doing that.

He asked me to trust him. Had he earned that trust? The answer is yes. Had he maintained that trust thus far? Still yes. Had I made a huge error in going against my natural instinct to be extremely and overly cautious about trusting him with something like fire in the first place? That is a BIG HELL YEAH!

I let my guard down, that is not to excuse it though, I still own that the mistake was mine.

You see Leon is a very bright boy, he retains information extremely well. Once something has been taught to him, you can be sure he knows it!! But despite that fact, or the fact that he has been to numerous fire safety exhibits, or that he has been taught how to build and maintain a campfire properly and safely in Cub Scouts, as well as by his Dad and Grandpa; I for one have never been comfortable with the idea of a child; let alone my child, my ADHD child at that,  near a flame; campfire, candle, or otherwise. I know that any parent, or non-parent for that matter would feel the same. But the fact that I had to go through life without my father due to a fire, makes me just that much more hyper sensitive to this issue.

Leon has been around quite a few fires in his lifetime, at the campground and with the Cub Scouts. I have seen him get awfully close, but not because he was being careless (quite the opposite really), but because he was given permission too. Not by me, well not at first anyway, but by his Dad (or Grandpa) who felt more strongly that he could be trusted because he had learned all the right things to do as well as what not to do. And because they were watching him carefully. Something that I have just learned is not enough.

Despite my heart beating a mile a minute and my holding my breath every time Leon even neared a campfire; I myself began to let my guard down and trust him as the others did. In fact I even felt a bit of pride at how well he handled himself around fire and at how much he knew about fire safety and prevention.

It was that pride and a small sense of security in knowing that my son knew how dangerous fire has the potential of being, that allowed me to drop my guard and trust him when he asked me to leave the candle on.

Stupid, stupid, stupid!! What the hell was I thinking??? Seriously, I freak out when I find matches or other fire starter within his reach, but I agree to leave an open flame lit with him in the same room? WTF??

I agreed because, before doing so we went over the rules of fire safety, I could watch him and the flame from where I was sitting, and he was clearly advised that he would have to sit on the couch and not go anywhere near it!! I agreed because I hadn’t taken into account that it was already 7pm and his medication had already worn off. I agreed because I let my guard down.

HE HAS ADHD, DAMN IT! NEVER, NEVER LET YOUR GUARD DOWN!!

The result was not disastrous by any means, but it was very scary for all of us. One minute I had looked over to where he was and where the candle was and all was peaceful and the next minute I looked up and the whole candle jar was on fire. I ran over and once I had realized what had happened, I snapped. I started to yell and scream, demanding to know what he did (knowing full well what he had done) while trying to put the fire out in a panic. Ron ran into the room and managed to get it out.

Leon’s immediate response was to deny, deny, deny. To which i called him a liar. Ron put his hand on my shoulder to calm me and it worked. I then calmly told Leon that we were leaving the room for 5 minutes to let him think and when we returned he had better be prepared to tell the truth.

The Truth? He threw a kleenex on top of the flame to make it a little bit bigger.

His immediate consequence was to go to bed early, we told him that we would have to think of a pretty big consequence to match the seriousness of his actions and that we would discuss it in the morning. Before he left for bed he drew a picture of all his favorite things with a circle around them and a line diagonally across and handed it to me. He said “I really don’t want you to, but I think you should take away my favorite things for like a month or maybe 2 weeks”. We told him our decision would be made by morning.

This morning Ron and I informed him that his punishment included No Computer, No Wii, & No DS for 1 week, additionally he was required to complete a different written assignment on each day of his punishment, (today he wrote “I will not play with fire 10 times) and lastly his he has to go to bed 1/2 an hour earlier every night for 1 week.

We turned his drawing into a poster as a reminder. It is the one pictured below. We then got into the car and drove to the local Fire Station and he had a talk with one of the firemen there. I really hope this will make an impact on him. Leon suggested that tomorrow his written assignment should include making a map of our house and developing an emergency escape plan.

I am still very worried. I have been ever since the psychologist who evaluated him told me to be cautious and watch for signs of pyromania as he gets older, as it is common among kids with ADHD as severe as his is.

WHY DID I EVER LET MY GUARD DOWN?????

I now understand why my mom beat the living daylights out of me with a yard stick when I was caught playing with fire!

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11/10/10 EDITED TO ADD: Just to add some clarity to why I am/was so hard on myself and so stricken by this situation  (and to explain why my mom beat the crap out of me); – a few months before my 3rd birthday and just two weeks before my sister was born (2 months prematurely); my father died of smoke inhalation in a fire. The fire ignited after he had fallen asleep in his bed with a lit cigarette, and he was trapped in the apartment, and the smoke got to him before the firemen could.

  FIRE SAFETY IS A BIG DEAL TO US!

My son has ADHD, now what? (on our decision to medicate our child)

When I began this journey; this ADHD journey, with my son, I was lost.

I mean, I knew what ADHD was …didn’t I??        

…Did I????

I had a vague idea, or so I thought. But as it turns out, I didn’t know what it was. Not really anyway.

I had heard the term, I had even used it –“ugh, you’re so ADHD, would you control yourself already!”

In the past when I had heard about someone with ADHD I would think to myself – Oh, ADHD?  Really?  Oh okay, so no big deal, right? WRONG!!

Yeah, but it’s not really real; it’s just an excuse parents use when they can’t control their kids, right? WRONG!!

But you can just have to control yourself or take a pill or something, right? WRONG!!

It is a big deal, and it is real, and it is neurological. It isn’t just a term or adjective to be thrown about, and it is not an excuse for bad behavior, and it should not be ignored or played down.

When I sought help for my son, I went in seeking anger management for my 5-year-old, after being told he was too young to have ADHD.

That’s pretty sad though, isn’t it? I mean really…, anger management …for a five-year old?

What does a 5-year-old have to be angry about anyway?

A LOT, apparently, especially when that child is neurologically disabled. There I said it, disabled.

Yes people, ADHD is a neurological disability!  Life with ADHD is not a phase, it is not an excuse, it is not bad parenting, and it is not curable. And it is definitely not easy; not by a long shot. Not for the person who has to live with it; or for the people who have to live with them.

Once we sought professional help, getting the diagnosis for Leon was the easy part. Knowing what to do with it was not.

“My son has ADHD, now what?” Seriously! Now what?  My guess is, that this is the question that plagues every parent that has just found out that their child is not the spawn of Satan, he just has ADHD. That and, “so what does this mean for our child?” and:

Well there’s always that little pill, right? WRONG!! …I mean right. No, I mean wrong, I mean maybe …it depends.

Right now, for us, for our son, it is right. But just because it is right for us, does not make it right for all people who suffer with ADHD.

No one wants to throw medication at a then, 5-year-old without cause or without exhausting all other avenues.  

And we, the doctor included were no different.

I am not the type of person who thinks a pill can solve every problem. In fact I’d like to think I am the opposite especially where my son is concerned. But I’ve had to come to rely on medication for so much. I’ve seen the good, the bad, and the ugly side of medication in both myself and in my son. 

Our decision to medicate Leon did not come easy, it took my husband and I several months to finally decide  to try it out, once we felt that there was really no other recourse. And even after extensive research online, in books and magazines and in seeking the advice of several different professionals it was still a very hard decision to make.

The ultimate turning point for us was when my best friend who also happens to be a pediatric RN told us to look at the quality of his life. Will medicating him give him a better quality of life?

And the answer was yes. Before taking his medication he could not function normally at home, in school, or socially with friends. He was constantly struggling to be “good”. He could not stop himself from constantly moving around, staying in his seat was impossible for him. He was always in the spotlight as being the kid in trouble; his self-esteem was so low it was nonexistent. The daily stresses of just trying day after day to control his impulses were more than he could bear. His frustration with himself and the lack of understanding of why, when he so very badly wanted to be good, he just could not; turned to anger and self-hatred. The pain of watching my child, get off the school bus day after day in tears, because he loathed himself so much, is indescribable. So again if taking the right medication was going to stimulate the part of his brain that was misfiring and allow him to function in a way that he could gain more control over himself then yes, yes, yes, it would give him a much better quality of life.

He was a few weeks shy of six years old when he began taking medication regularly. We started very slowly and felt a sense of reassurance knowing that if it didn’t work then we would take him off of it at any time. He is now just a few weeks shy of his 8th birthday, and has been on medication ever since.

Has it helped him? That is a resounding YESSSS!! Is his quality of life better? Ever so much so!!

Is it really just as easy as popping a pill and you’re done with the whole mess? NO WAY!!! NO HOW!!!

This is has been a very bumpy ride; there has been nothing easy about it, least of all, medicating (Leon’s) ADHD. We have gone through 5 different medications up until this point. Some were very effective, until they weren’t any more for no other reasons than his system had become used to it or his growth required higher doses. And some were downright disasters! Disasters to the point of us nearly losing our son as a result of being on a medication that was completely wrong for him. But despite the nightmares we lived through, as a result of that, we would not change our decision to put him on medication. We also will never stop questioning if it continues to be the right choice.

And nothing, NOTHING is ever as easy as just popping a pill. Becoming healthy, being healthy and staying healthy will always require a bit of work. I am a true believer in that, and you will NEVER hear me say that medication alone is what helps my son. ADHD is a constant struggle, and medication is just one of the ways we combat Leon’s ADHD. As his special needs change so will our methods.

Scratch That!

I think it was about 7am-ish when Leon pounced on our bed and announced that it was time to get up. I am not too sure though because I was DEAD ASLEEP. I heard him, I even saw him through squinted eyes. I heard Ron say something about the TV. And then ZZzzzzzz!
It was close to 9 o’clock when Leon pounced again. The TV timer kicked in and turned off the TV (a tool we use to get Leon to the school bus on time). He need us to enter the password so he could finish watching his show.
I pad into the livingroom and through squinted eyes I fumble with the remote. Everything is all blurry. I forgot my glasses. I go get them and return. As my eyesight returns my gaze falls to the coffee table.
The words come booming out from my lips “GET TO YOUR ROOM THIS INSTANCE BUSTER!! YOU ARE IN BIG TROUBLE!!!”.
This is what I saw:  

Yes! He did use that ROCK to CARVE his name into the coffee table!

 

I plop down on the couch in disbelief only to stick my hand in something cold, wet, and slimy.
Ugh! Jello!
I take a quick look around…. there!….. there is the half eaten cup of red Jello.  

But wait, this is green jello?!  

Look! there’s some orange Jello too!  

I look around.  

Hmm, nothing, no sign of any other containers.  

I scan the floor…  

OMG! Between the couch and under the table…  

This is what I find:  

  

  

That’s 3 Jello, 2 pretzels, 2 Capri Suns, and several chocolates  

…and now he is grounded to his room for the day.  

   

Lesson of the day:  

Do not leave your ADHD/ODD child his own devices in the morning for any length of time without the aid of his medication!!

On the Positive Side

 I am writing this in response to a negative comment I received last month on this older post I had published back in Aug 2009.

The author of the comment seemed extremely opposed to the idea that there could be anything at all positive about ADHD, in fact he is very confident in his statement that “ADHD has NO positive symptoms.” . He also stated that “the idea that ADHD has benefits is an urban myth“. He seemed to imply that I don’t have my facts straight, and that I was devaluing my son by crediting an illness with certain positive traits that are enhanced and heightened by his ADHD. He also implied that I am doing my son “more harm than good, by trying to convince myself that the bad symptoms are balanced by supposed good ones in order to make myself feel better about his condition“.

He also seems to assume that I have done NO “real” research what-so-ever on this devastating disorder that has turned our lives completely upside down.

He suggests I come to terms with the fact that Leon has a mental disorder. And if I do not choose to manage illness properly I will be setting him up for a huge amount of problems later in life.  He put it this way “you can either come to terms with the fact that most of the behaviors you described are NOT positive now… or you can come to terms with it when he ends up in financial trouble or addicted to something or a thief or unable to hold a steady job“.

Woo-boy was I really steamed up about this!! So much so that I just could not respond… not yet anyway. I just could not stop thinking about it, I was just so mad at this man. This bitter, bitter, evil, uninformed man, with a chip on his shoulder. I did read a bit of his blog, as he suggested I do, so I knew where he was coming from. Even so I was still pissed off. So I had to step away from it for a while.

Now as I reread it all I am still quite annoyed by it all, but at the same time I mostly feel very, very sorry for this man. It seems that with his recent diagnosis of ADHD, he has found something to blame for all the bad things that have gone on in his life without needing to take ownership of it. Going through life focused on how much it sucks because you have ADHD, just makes for a very miserable life! 

On the Positive Side….    

I can agree with him on one point, and that is we have a choice about how to manage ADHD. But I wonder if he understands that there is no one right or wrong way of doing it. Every person’s struggle and accomplishments with ADHD are unique onto themselves. What works for one may not work for another. And just the same what may work this week, or this month, or even this year may not work in the next one.

 I have in fact come to terms with Leon’s neurological disorder, ADHD, which is classified as a mental disorder, as well as a disability. I have done the ‘real’ research and have educated myself about my son’s ADHD. I’ve read dozens of books and articles, joined CHADD and attended several meetings, consulted with wonderful doctors and professionals in the field of ADHD, including psychiatrists, psychologists, neurologists, and therapists. The psychiatrist who diagnosed him started us on our ADHD journey, we found an exceptional psychologist who did an extremely thorough educational/behavioral assessment on him, and confirmed the diagnoses of ADHD/ODD and made some very good suggestions for us and the school to follow. His neurologist has him on the right medication combination of Concerta and Clonodine, they work wonders in keeping him stabilized and putting his inhibitions, impulsivity, and inattentiveness in check. We as a family visit a therapist, specializing in special education and social skills, regularly. His school has a wonderful team of people who are implementing his 504 Plan, including the school psychologist, a OT, and a TA. 

And with all the bad that we experienced last year when he was just 6 years old; from hour-long homework sessions, to having to replace a toilet bowl due to his flushing several toothbrushes, to his public and private temper tantrums, to stabbing his OT teacher with a pencil, to journaling about killing his parents, to cutting his clothing while they are still on him, to having him fear going to school because he knew he would get in trouble yet again, to the school losing him, to him jumping out of his bedroom window at 5am, to so much more….; there is still NO ONE who can tell me that there is nothing positive about ADHD!!!

~~psst! did you notice all the links to previous posts? you can get the back story that way~~

 

Here are some excerpts about the positive side of ADHD:

Positive effects of ADD & ADHD in children

from HELPGUIDE.ORG

In addition to the challenges, there are also positive traits associated with people who have attention deficit disorder:

  • Creativity – Children who have ADD/ADHD can be marvelously creative and imaginative. The child who daydreams and has ten different thoughts at once can become a master problem-solver, a fountain of ideas, or an inventive artist. Children with ADD may be easily distracted, but sometimes they notice what others don’t see.
  • Flexibility – Because children with ADD/ADHD consider a lot of options at once, they don’t become set on one alternative early on and are more open to different ideas.
  • Enthusiasm and spontaneity – Children with ADD/ADHD are rarely boring! They’re interested in a lot of different things and have lively personalities. In short, if they’re not exasperating you (and sometimes even when they are), they’re a lot of fun to be with.
  • Energy and drive – When kids with ADD/ADHD are motivated, they work or play hard and strive to succeed. It actually may be difficult to distract them from a task that interests them, especially if the activity is interactive or hands-on.

Keep in mind, too, that ADD/ADHD has nothing to do with intelligence or talent. Many children with ADD/ADHD are intellectually or artistically gifted.

AND……

Some positive characteristics of adults with ADD/ADHD

from mitalk.umich.edu 

The symptoms of ADD/ADHD are not all negative. People with ADD/ADHD also have many positive traits that are directly tied to their active, impulsive minds. The important part is to focus on the positive aspects, while trying to control the negative aspects.

  • Creativity: People with ADD/ADHD often excel at thinking outside of the box, brainstorming, and finding creative solutions to problems. Because of their flexible way of thinking about things, they tend to be more open-minded, independent, and ready to improvise.
  • Enthusiasm and spontaneity: People with ADD/ADHD are often free spirits with lively minds — qualities that makes for good company and engrossing conversation. Their enthusiasm and spontaneous approach to life can be infectious.
  • A quick mind: People with ADD/ADHD often have the ability to think on their feet, quickly absorb new information (as long as it’s interesting), and multitask with ease. Their rapid-fire minds thrive on stimulation. They adapt well to change and are great in a crisis.
  • High energy level: People with ADD/ADHD often have loads of energy. When their attention is captured by something that interests them, they can have virtually unlimited stamina and drive.

Hyperfocus: A Positive Symptom of ADD/ADHD

While adults with ADD/ADHD have great difficulty maintaining attention, those same individuals often are able to “hyperfocus” for long periods of time on tasks or projects that they find interesting. This is particularly true of interactive or hands-on activities. They may even be compulsive about it, spending hours immersed in the activity without a thought to anything or anyone else. When they’re “in the zone,” people with ADD/ADHD often lose all concept of time. Hours pass as if they are minutes. This single-minded ability to hyper focus when used appropriately can lead to significant accomplishments, discoveries, and creative breakthroughs.

AND…

In the video,

 ADD & Loving It 

from GLOBALTV.COM

(which I very, very, strongly recommend and urge you to watch)

 ~Dr. Edward M. Hallowell  says; “Without proper diagnosis ADD can ruin your life, having said that, the tremendous good news is, if you get the diagnosis and you get proper treatment, not only can you avoid all those disasters, you can achieve spectacular success. You can be at the absolute pinnacle, not only in the terms of success, but in happiness, fulfillment, and a rich and wonderful life”.

~He also says; “It’s important to embrace a strength based approach that does not in any way deny that there is a downside but emphasizes the positive as a way of developing the positive”.

~It is also pointed out that, Dr. Lynn Weiss Ph.D, a ground-breaking pioneer who has been working with ADD patients for over 30 years, lists 29 Positive Attributes of ADD. 

As listed in her book Attention Deficit Disorder In Adults: A Different Way of Thinking

1. Sensitive

2. Empathetic with the feelings of others

3. Feels things deeply

4. Creative in nature (including problem solving)

5. Inventive

6. Often sees things from a unique perspective

7. Great at finding things that are lost

8. Perceptually acute

9. Stand-up comic

10. Spontaneous

11. Fun

12. Energetic

13. Open and un-secretive

14. Eager for acceptance and willing to work for it

15. Responsive to positive reinforcement

16. Doesn’t harbor resentment

17. Quick to do what one likes to do

18. Difficult to fool

19. Looks past surface appearance to the core of people, situations, and issues

20. Down to earth

21. Good networker

22. Sees unique relationships between people and things

23. Cross-disciplinary and interdisciplinary

24. Less likely to get in a rut or go stale

25. Original, with a sense of humor

26. Observant

27. Loyal

28. Intense when interested in something

29. More likely to do things because they want to than because they should, thus often wholehearted in efforts

 Keep in mind not everyone who has ADHD has all these traits, and sure people who aren’t ADHD have these traits too, but many of them appear over and over in people with ADHD.
So you see, not only have I read about the positive side to ADHD, gone to lectures about the positive side to ADHD, and spoken with professionals about the positive side to ADHD, but we have experienced the positive side of ADHD as well.

Leon has become extremely well-adjusted, all the school’s accommodations along with our accommodations here at home, and his being on the right medication regime and seeing a therapist regularly are making all the difference in the world. We are teaching him to play to his strengths and never to use his ADHD as a scapegoat.

We do not in any way deny the negatives of ADHD, yet we CHOOSE to remain on the positive side.

And would you believe we are all doing just fine, Thank you very much!?!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

More links on the positive side of ADHD

 Positive Aspects of ADHD and ADD: Benefits to Having Attention Deficit Hyperactivity Disorder and Attention Deficit Disorder

The Positive Side of ADHD

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I just want to add that I in no way harbor any resentment to the person who prompted this post. Nor do I think he is Evil. 🙂   I wish him only the best, and many, many, positive things in his journey going forward with his ADHD!!

  

  

  

 

 

 

 

A Mother’s Guilt is Never Done

Ooooh! Owwww! Ohhh!

I just spent almost an hour outside in the wet, cold, snow with a shovel in hand, breaking my already injured back and ignoring the stiffening of my joints and the labored breaths.

Yes!  Me…..outside…..in the snow! ……Can you believe it?

Now, I am soaked from head to toe!

I am chilled to the bone!

I am pooped! 

And I am HURTING!

Bad!!

Ah, the things we do for our children…

You see, I was not shoveling the walkway or clearing out our cars or anything constructive like that, I was trying to build a fort and make a snowman with Leon. Even though I already knew going in, that I would be paying for it, for days to come. 

We trudged our way through the snow, I shoveled up piles and piles for him to mold into whatever his little heart desired, I stooped down low rolling snow balls around hoping for a perfectly round boulder sized base for our snowman, and I got down on my hands and knees and helped him shape the walls of our fort.

Our fort was no where near as good as Daddy’s are. In fact it wasn’t as much of a fort, as it was a really thin three-sided lip of snow about as high as the curb. Okay so maybe it was a bit higher than that. Leon had to lie flat on his belly to be completely shielded. In other words it was a very poor excuse of a fort. And our snowman, weeeell he’s more of a snowblob with a too small red knit cap sitting on top. But it made Leon happy to be outside in the snow, even though his usual snow buddy could not be there. Alas Daddy was working. And I, …well I would have been very content to just sit around in my pajamas all day long.

Our morning did start out that way. Leon crawled into my bed after Daddy left for work wanting me to get up and make him breakfast. I readied myself to get up and get him off to school and then I remembered the 6:30am phone call that the school was closed due to the snow storm.

“No school today Leon, it’s a snow day, lemme sleep just a bit longer”

If you’ve read my previous post ADHD vs. Fibro you know what direction that could have headed, but didn’t.

I felt guilty. How do I tell my over-active and impulsive ADHD 7-year-old to just sit by and wait while I got some more shut-eye? So I did get out of bed, but I did not do much more than that.

Whaaat???, It was early and there was over a foot of snow outside! Do you know what that does to my Fibro?

Well, I did at least feed him. I gave him a bowl of dry cereal and even let him eat it in the livingroom while watching TV.

After patiently staring at the weather channel that I had put on, for about 20 minutes, he asked to play his DS game instead.

Being that I wanted to continue watching the weather report, I said sure without batting an eyelash, and settled in under my blanket on the sofa while he blipped and bleeped away at his game at my feet.

I ended up dozing off for a couple of hours… talk about bad mommy guilt.

So I had him put away his game for a bit and find something else to do. He started a couple of puzzles, played with his legos, and pulled out a book to read …40 minutes later he is bored again. And I am feeling guilty and just a bit lazy. C’mon it’s pajama day!

Leon was being so patient and so good for a kid cooped up in the house with his ole mom.

I pulled out some paper, scissors, and markers for him and put on a Disney movie. And he happily set out to color and snip away the day, while watching “Akeela and the Bee”.  

So far, so good. My evil pajama day plan was working! Mwaa-haa-haa!

I half read, and half watched the movie from the comfort of the couch. I figured the movie would kill a good two hours….

 Yeah sure, once he was done making his projects, he left the mess and sat in front of the window and just stared out at the snow falling.

When I asked what he was thinking, he said, “Well, I was thinking I want to go outside and play but I know you don’t feel good so I’ll just watch the snow fall”

Ugh! More Guilt. I have the greatest kid. Sure he can be bull-headed and oppositional at times, but he is also very sweet and sensitive.

I told him to go get his snow gear, we were going out! Normally it takes about 15 minutes every morning just to get him dressed for school, but not today he was ready in two minutes flat and ready to go. I on the other hand, was much slower. Poor Leon was just starting to lose his patience.

Being outside wasn’t that bad, …at first. But after a little while I had to sit down and take a few short breaks here and there. The more we worked the stiffer I got. And the kneeling in the snow did not help at all. I was wet and I was cold.

The worst thing about being in the snow with Fibro is that I get chilled to the bone. It literally feels like my bones turn to ice and start splintering from the inside out. The cold becomes the source of my pain.  This doesn’t happen every time, but because this has been such a harsh winter, my body hasn’t had a chance to catch up and restore itself fully between flare-ups.

I needed to get inside, but I could not just leave Leon outside by himself. We only have a front yard and it isn’t completely fenced in. Although truth be told, since he has been doing so well on the Concerta, I am not as concerned as I used to be about his impulses and distractions getting the better of him. My concern with leaving him alone had to do more with leaving him lonely (which often equates to “sad and bored” for him).

We made some calls and knocked on the neighbors door, hoping to find someone to come play in the yard with him. Unfortunately no one was interested or available. So I stayed outside a bit longer until my body just could not handle playing around in the snow anymore. My heart and mind was in it, but my body just said NO.

I gave him the option to stay out and play by himself or come in and play the Wii with me and I would even let him pick the game (ugh). He chose staying outside if I would stay by the window and watch.

I could not help feeling guilty as I watched him wonder around the yard by himself, looking for something ‘fun’ to do. The smile he had, had on his face while we were working on the fort together was gone. I felt guilt and SADNESS, for my lonely little boy.

This time I wasn’t just feeling guilty for being sick and unable to keep up with my child, but also for not having another child, a sibling for Leon to be his companion growing up. And although the decision not to have another child was not mine, I have come to realize it was probably the right decision. But at times like these it’s hard to swallow.

I just had to do something, my heart was breaking for him, but I had already pushed my body to the limit and I no longer could stand up straight. I decided to call my neighbor and asked if I could hire one of her middle school kids to come and help Leon finish building his snow fort. Unfortunately they had, had enough of the cold too and wanted to stay indoors. Oh well, I tried.

Soon after Leon decided he was coming in. Then something caught his eye, and he shouted, “Mom, look I think Lauren and Alex are coming to play with me!”. Sure enough the neighbor kids had a change of heart and were on their way to help build the fort after all. I told them I would pay them for being a mother’s helper.

The fort was beautifully made and Alex took some twigs and spelled out Leon’s name on it

Leon is all smiles again! And so am I.

And the really, really sweet part about it was Lauren and Alex said that they didn’t feel right taking money because Leon was their buddy and they had fun.

Now all I have to feel guilty about is not being able to go to tonight’s Boy Scout Blue & Gold Award Ceremony with Ron and Leon because I can’t even stand up without wincing in pain. 

A Mother’s Guilt is Never Done

How is THAT for improvement!!!

I just wanted to share this:

This is Leon’s spelling test, taken last month on 1/7/10. And while the grade is wonderful, that is not what I am boasting about (he always get 100% and up). What I am so thrilled with, is his handwriting. For him this is GOOD! Granted it’s a bit all over the place, some of the words are floating, and the spacing is off, but you can actually read it!!!

In the past, he has had to do parts of the test over and over again in front of the teacher just so she could see that he knew how to spell it correctly as it was often illegible. 

I wanted him to keep it up so I told him I would award him 10-minute token in exchange for neat handwriting. The 10-minute tokens can be traded in for screen time (Wii, DS, or computer games). All hail the power of Nintendo

Over the next two weeks that followed, I didn’t really see much improvement or even effort for that matter in the work he brought home. So I reminded him that I would be grading his spelling test for handwriting when he got home, and that he would earn a token if it was really neat.

This is what he came home with:

NICE!!!!!  Do you see it? The improvement?

Obviously he still needs work, but the incentive program was working. I decided that we would focus on his spelling tests and not every little thing that he came home with during the week. We are taking baby steps….

Here is the next test he took looked like:

Awesome Job!!! For this test he earned extra tokens! Not only did he impress me, but he impressed Ms. Kelly! He was so proud of himself! As am I.

The following week was a tough one for me fibro-wise so I wasn’t as on top of my game as I would have liked to have been. The thursday night before last weeks test I had forgotten to remind Leon about putting the extra effort into his handwriting to earn tokens. Turns out he needed no reminder. this is what he came home with last Friday.

How is THAT for improvement!!!

When he concentrates really hard he can do it.

For him, though, that is half the battle. Given his ADHD, it takes real effort for him to concentrate. For things that don’t come naturally to him, like handwriting, he has to stop everything and just focus on that one thing. He is always in such a rush, with his mind racing ten steps ahead of whatever it is he is doing, it isn’t always an easy transition for him to make. Just slowing down his brain to get to the point were he can concentrate takes a huge effort on his part.

Leon responds well to the right incentive. Luckily I have figured out what the right one (for now) is. Now to extend it beyond just his spelling tests and into his everyday handwriting.

When he isn’t concentrating hard on writing legibly it looks like the letter he wrote to his teacher (in response to her taking his water bottle away for the day) below:

It reads: “What I was doing was trying to unburn my rugburn  P.S. you are the meanest teacher I ever had”

…..but wait there is more:

Reads: “the reason is you all ways punish me and the rest of us”

Well at least he is expressing his feelings in a nondestructive manner. So Kudos for that!

It’s obvious he was angry when he wrote this, so it would be easy to say that the rush of emotions contributed to the sloppy writing, but if you look at the handwriting example in my previous ‘Dear God’  post. You will notice it is just as bad if not worse. Both were written with in the last two weeks.

Our goal now is to have Leon keep up the good work on his spelling test while working on his handwritting in his assignment book.

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 🙂

Project11

The Bright Side of ADHD.

With everything that’s been going on, sometimes it is difficult to be positive about things. But I do try.

I am supposed to “Look on the Bright Side”.

Everyone says so, from family and friends, to books and articles, to TV shows spot-lighting ADHD.  Everyone assures me that things will get better. Yes, yes, I know. Things will get better, he will learn to cope, I will learn to cope, his father will learn to cope, ….everyone will learn to cope. H will grow up to do amazing things, of that I am sure. But right now, at this very moment, we still have to live through it, feel it, and experience it, don’t we? Of course we do, that’s how we learn to cope and move on to better things.

There will be good days and bad days.

Of course there will. For everyone not just ADHDers.  For me, a good day is waking up without a headache to a peaceful house, with no one screeching at the top of there lungs, that they’re huuuungry, and the don’t wanna go to schoooool, why can’t I just stay home with yooooou, and then locking themselves in there room while you try not to lose your temper, scream your head off or strangle the poor little angel.  A bad day is waking up in panic because your 6 year old child is not curled up on the floor at the foot of your bed where you insists he sleeps at night, at least until the medication that is screwing up his thought process and self control is completely out of his system, so you know he hasn’t slipped out a window in the wee hours of the morning. A good day is when your child gets so hyper-focused on a good thing like earning a single piece of paper to practice his new found obsession and talent for making paper hats instead of being hyper focused on collecting bugs in his room to study and sneaking food under his pillow to feed them with so they will trust him and live in his room forever. A bad day is getting a phone call from the school saying that they are very concerned for his safety as well as others because while working on his first grade journal, the blank in this sentence “This is me in June, this summer I __________” was completed with “will kill my Mom and Dad” and drew two gravestones (…and people wonder why I have such a problem with the media and the depiction of weapons and violence as a normal everyday occurrence) . A good day is friends,family, acquaintances, etc.. rallying around you with support, advice, and wishes for better days. A bad day is friends, family, acquaintances, etc..telling you what you should be doing instead of what you are doing because they assume you haven’t looked into everything possible or that you aren’t doing it right.  (okay, okay that last one wasn’t fair, I know, I really do know, everyone is very well intentioned with their advice and I do welcome it on the good days, but sometimes when you already feel beat down by life and what is going on at the moment it can feel more like criticism than well meaning advice.) A good day is realizing that there will be good days and bad days.

So in the spirit of having a good day I plan to find the bright side of things everyday. 

Today’ s “Bright Side of the Day”, and it’s still early mind you, is Leon’s ADHD maybe helping me lose weight. With all the issues he’s been having they don’t want him riding the school bus, and since I have been without a car for about two weeks now, I have to walk him to and from school everyday. That’s gotta count for some burned up calories, right!

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Blogging it out!! (Part 1)

While it would be so much easier to just block it out, that is just simply not an option here. So I am blogging it out instead.

I need to release this, …this, …this panic, stress, fear, pain, anger, desperation, and a bunch of other words I just can’t think of right now.

I haven’t posted in a while (3 weeks have past) because it’s just too exhausting to rehash everything.  I’d like to be able to at least alternate between the happy events and the difficult times on here but lately the difficult times just seem to over shadow the happy. But isn’t that just always the way it is, it’s the bad and the ugly that weigh heavily on our minds and the good that just floats on by. In an effort to take the weight off I am dumping it all, right  here, right now. ALL OF IT!!

Leon’s behavior just seems to get worse with each passing day. Every week it is something new. And I just can’t figure out what is going on. In a previous post; The Dreaded Phone Call I told the story of Leon “stabbing’ his OT in the hand with a pencil. That occurred on Monday 4/20/09,  and even though that was 3 weeks ago, story now continues from there.

Tue. 4/21– Bring Leon to the bus stop and have an anxiety attack triggered by the fact that Leon told his bus mates that he was grounded and when they asked what he did he started to say “I stabbed the teacher” before I pulled him away and reminded him NOT to tell people that, it was no one’s buisness but ours! (oh and anyone that reads this blog) I just didn’t want the kids at school thinking of him as that kid that stabbed the teacher with a pencil.   – I also decided to start up Leon’s daily progress journal again ( a notebook that goes back and forth between his teacher and I)

Wed. 4/22 –  Leon comes home with a 2 page entry in his journal, these are the highlights:

Leon did not want to work this morning

Leon cut up his papers so he couldn’t glue them back together

Leon rushed his coloring, scribbling all over with one color

Leon proceeded to make noises and fool around w/ his neighbors

Leon blew his second chance with the papers by doing the first page and crossing out the rest

Leon put glue stick all over the floor

The principle came to speak with Leon

Leon ate lunch in the principles office and completed his work there

Leon decided to push his desk to another spot during math.when told to move it back (to his spot), he moved it all the way to the back of the room. When Mrs. D looked at him he wisely said “Well you told me to move it back!”

Leon refused to sit when Mrs. D moved his seat to the correct spot, instead he decided to lean on it and dance

Leon tripped a girl (D) while packing up in the coat room, then he walked to the center of the room and threw his money. each time Mrs D tried to stop him he would walk away and throw something else.

Leon was very disruptive and defiant, unfortunately they were unable to complete their work as a class.

After reading all this when he got home from school I felt some major consequences were in order. We decided that he would lose his DS privileges for the rest of the month – I also took this opportunity to put my “earning DS time plan” into effect.

I am pretty proud of this plan. It entales earning tokens for certain tasks, the tasks include cleaning his room (reinforcing the “No DSifyourroomis a mess” rule ,  staying in his seat until his meal is complete (something we’ve been working on for a loooong time – he hops around and gets up at least a dozen times before a meal is through – arrrrgh), emptying his collection basket (a basket of all of the things that I find laying about the house instead of away where they belong), making his bed (which actually means clearing it of all the books that get dumped on there each morning when he wakes up before we do). For each completed task he gets a round magnetic token which equals 10 minutes of time for use on his DS or other computer game. Another rule is that in order to use his earned time he must have 30 or more minutes saved up AND his room must be clean (remember, “No DS if the Room is a Mess!”) …I have to say I looove this plan!! It has been working well and Leon actually enjoys it and seems to have a sense of pride over earning the tokens.

Okay, so in addition to his losing his DS and having to start ‘the plan’, I just could not see letting him go out and enjoying himself as if nothing had happened at a birthday party after such bad behavior so I would not let him go to Mac’s Bday party. (SORRY MAC!!! and Heath!!) He was devastated, I hated doing it because both Mac and her family are very important to me. But I just could not do it! Leon became very defiant and even tried to run out to the car so I could not leave without him ( I planned to go anyway as they are close friends) I had to physically pick him up and put him in his room. In defiance he refused to take his coat off swearing that he was not moving from this spot and when daddy got home he was going to get in the car and go with me! He stubbornly stood his ground and refused to move from his spot in his doorway. he stood in the same exact spot for a good 30 to 40 minutes while I waited for Ron to get home from work so I could leave Leon. Anytime I would look in on him he would be in the same spot and say”I’m still here, I’m not moving”. When Ron pulled into the driveway I went to reassure Leon of my love and planted a kiss on his forehead. That’s when I smelt it. I looked at him and asked “Did you poop your pants?”  …yup he pooped! So I told Ron to take care of it and I left. Not to long after that Ron put Leon to bed and got on the phone with a friend, during the call Leon interrupted several times, and Ron told him to stay in bed, after too many interruptions Ron went to speak to him only to find out he pooped his pants again……

Thur. 4/23– There was a pushing incident in gym but the rest of the day went well. ….it went well that is until he got home. I wasn’t home. Ron was. I had to work a consignment sale for a few days so Ron took that day off to help me. He got Leon off the bus and began the homework battle, something that I am secretly happy about this, maybe he appreciates what I go through on a daily basis with Leon now. That was followed by Karate. Ron as usual had no trouble getting him to go, but that did not mean it was trouble free. Leon managed to find a safety pin  in Ron’s car. He bent it into a ‘M’ shape to lace around his fingers and then took it into the class with him. Luckily the Sensai saw it and took it away but not before finding out that Leon’s plan was to lace it around his fingers, point sticking out palm side so he could high five someone with it. Okay I have to say it WTF!! What the hell am I going to do with this child?????????

Fri 4/24 – I did not deal with Leon at all this day, I was out working the consignment all day and night, I saw him briefly in he morning and kissed him at night as he slept – my angel. That’s not to say my day wasn’t anxiety ridden given the week we just had.

Mon 4/27 – and the 4 days that followed were relatively mild in comparison to the prevous week, even though the daily journal did report some refusal to work, disruptive behavior, calling out, tattling, and excessive energy (read; constantly on the go). At least there were no phone calls.

Sun5/3– Leon had an appointment with his Pediatrician to discuss his escalating behavioral issues and aggressiveness, along with some possible treatment options. The doctor and I discussed whether or not he was an anxious child, to which I would have to say yes. Leon is hyper-sensitive and often quite anxious about things, he gets apprehensive about certain movies (we are talking Disney movies) where if he is kept in suspense and suspects it might be scary he has to shut it off or leave the theatre, seemingly simple rides scare him yet others of equal level can be fine, certain noises worry him, he’s afraid of the dark, he gets very very anxious over the possibility of failing at something therefore refuses to try and that includes school work. So we discussed medication and trying him on a mood stabilizer. The question now was if he should stop the stimulant and just take the mood stabilizer or should he take both at the same time. Being that both Ron and I had been against meds to begin with, before we even came around to agreeing to him taking anything, I agreed with the doc that we should try just the mood stabilizer and reintroduce the stimulant if necessary.  Meanwhile being that I have no choice but to go to the doc appointments alone, I still had to discuss it all with Ron. So while I got a prescription, it was not actually filled till the next day.

Mon 5/4– Ron agreed to the medication plan and we had the script filled for use beginning on the next day. Meanwhile at school Leon’s day was full of energy, calling out , very talkative, and disruptive.  ….basically, the usual. When Leon got off the bus he seemed very excited about something. He ran right up to me yelling “I’m a girl, I’m a girl, Look at me I look like a girl” As he gets closer I realize he has something all over his face. It’s blue marker. Marker that he used as lipstick, eyeshadow, and a dot on each ear for earrings. He proudly holds out his hands to show me the pink marker nail polish on his fingers. I asked him what happened? He said “I colored my face and hands to look like a girl, don’t I look like a girl?” , “Why do you want to look like a girl?”,I ask. He says “Because I want to be a girl”. I ask, “Why do you want to be a girl?”, He answers “Because mommy, I don’t want to be me!”, “I don’t like being me, I am bad and I always get in trouble””So I want to be a girl”        …….did you hear that???? That was the sound of my heart breaking!!!! My poor poor little boy! We sat down together on the floor, him in my lap with my arms wrapped tightly around him, while I told him how sad I would be if he were anyone other than my child. That he was just perfect being not so perfect. That he was my superstar, and that he was just fine the way he is. I assured him of my love and squeezed him sooo tight, until he said “okay moooom, can you let me go now so I can go clean my room to earn minutes for my DS?”, “Go right ahead Leon, go clean your room if you want”  …{click, Whhhaaaa!} That was the sound of me locking myself in my room and crying my eyes out. I don’t think I ever fell asleep that night or the next few for that matter either. So much weighing on my mind! SO MUCH WEIGHING ON MY POOR LITTLE BOY’S MIND!!! Why Lord? Why? Why must my child go through this? Why at age six do things need to be this difficult on him? Why isn’t there a clear, cut and dry answer on how I can help him? How can I take this pain away? I bleed for him, I feel his pain, I felt his pain…. When I was a child (granted older than six at the time) but a child none the less I felt this pain, only it was my own. It was pain that I had carried with me through out my life …that is until I met Ron and found new hope. Ron allowed me to see myself through his eyes and the pain was lifted. It took 30 years for that to happen. Why can’t I lift this pain for the greatest love of my life, heart of my heart, my reason for being, my son? I don’t want him to have to go through this in his life, not even for a minute.

Tue 5/5– His first day on the mood stabilizer (without the stimulant). Wow what a stupid idea THAT was!!! The phone call from the gym teacher calling to let me know Leon had defaced the gym walls by drawing on them in pen was bad enough. But then Leon came home and his daily progress journal was filled with a 5 page note from his teacher. Granted I asked for the feedback on how the meds were working but I felt like I had the wind knocked out of me when I saw it. Here is the Cliff-notes version (oh and now you will see where my time line idea came from):

9:15am – off to a bad start, climbing up radiator

9:20 – put feet up on teacher’s desk to block children from passing

9:30 – sat in every seat but his own

9:35 – scribbled in assignment book, blacking out the days section, rendering it unusable.

9:40 – kept picking up his supply box and dropping it until it exploded all over. Instead of picking up his supplies when told to, he began rolling around the floor

9:45 – School social worker called in to work with him during math. He managed to stay on task

10:45 – continued to act out once she left, walking around the room, pulling things off the shelf, every time his teacher told him to put them away and continue working, he found something else to do

Snack time was uneventful as he watched a 10 minute movie clip

11:30 – Class began making Mother’s Day gifts as Leon took the pieces a part and put glue all over everything and then refused to finish it.

Then he took the stamper off the teachers desk and began stamping everything – teacher removed the stamp

Then he started banging on the stapler on her desk – she removed the stapler

Then he grabbed her scissors and started snipping at the air – she removed the scissors

Then he walked away from her desk pulling all the papers off and throwing them to the ground

He then climbed the radiator and walked across it and messed up the snapcubes. All the while the teacher was trying to assist the other 25 children who needed help but could not get it because she was too busy taken things away from Leon.

Then he walked around the room touching everyone’s project moving their pieces around.

12:25 – Rec time followed by lunch, in the halls he had to touch everything he passed

Then came gym where we already know he wrote on te walls in pen.

I the hallway he had to be removed from the line and was told to sit on the bench, as soon as the teacher turned around he was standing on the bench

He did well in computer class till it was time to shut down. He protested by running across the room and jumping on the radiators again

He was very argumentative throughout the day and would not stop moving.

To quote the teacher “I don’t think this new medication has any effect on Leon, he is the same as he was in the beginning of school before you started the meds if not worse”

……….That night in speaking with his therapist we learned that the mood stabilizer usually takes 1 to 2 weeks to start working!!!! Oh HAIL NO!! No way is my child going to have to endure this (let alone that poor teacher of his or the rest of the class)

Wed 5/6 – Back on the stimulant, together with the mood stabilizer! He was described as being seemingly calmer from the moment he walked through the door by his teacher. He had a good day working nicely.

Thur 5/7– SPECIAL PERSON”S DAY — Yay, I’m a special person! What a gooood day. Leon picked me, to be his special person of the day. I got to go and sit in his class with him. The children each got to read a special note to each of their persons and got to do an activity with them. It was very cute!!! Leon had a good day!  We all had a good day.

Fri 5/8 – Leon had a toy he wasn’t supposed to have taken away by the principle. Then Leon tried to pull it out of her hands (not a good idea!) But other than that a good day. I was invited back at the end of the day for Mother’s Day Tea in class along with all the other moms it was very nice. I am sad I forgot my camera – they sang some really cute songs!!! Fridays are special to Leon because he gets to have playdates. He and his friend had a blast.

See…. I can recall some good too

Sat 5/9 –  This past weekend was very chaotic, we had lots going on from basement floods to cars not working (both of them) to dealing with Leon acting out. On Sat. Leon and Ron went shopping for my Mother’s Day gift, while on line, Leon became very interested in the trading cards. He repeatedly asked Ron to buy them for him, and Ron repeatedly said no. They had just purchased to new books for him and that was enough. As Leon continued to beg for the cards, Ron advised him that if he asked again the consequence would be having to walk back to the bookstore to return his books. Leon asked again, not once but twice and Ron continued to say no. On the way to the store exit (mall entrance) Ron noticed that Leon had a bulge in his pocket that wasn’t there before. So without accusing him he mentioned it to Leon and explained how wrong it is to steal and if there was something in his pocket that did not belong to him he might want to put it back. Ron wanted to give him the opportunity to correct himself, and believe me he gave him plenty!! When it was clear Leon was not going to put it back, Ron told him that if they left the store and he checked his pockets and found stolen property he would have to punish him by taking away his DSfor a whole month and that if he wanted to, he could go into the next aisle and take care of it before walking out the doors. Ron was sure that would work. You know what they say, “..don’t make any threats you don’t plan on following through on”. What Leon hasn’t quite realized yet is that we are follow-throughers!!! If we say it we will do it, whether we like it or not! And in this case, it’s NOT! Ron instantly regretted saying it and I definitely am not happy he said it… “ALL HAIL THE DS, ALL HAIL THE DS!”. Wouldn’t you know it Leon walked out of the store with a pocketful of stolen trading cards. Ron walked back in and put them on the shelf (although I would have much rather preferred he made Leon return them, but he did what he thought was best), then headed back to the bookstore. The whole walk over Leon did not say one word, until he stepped foot into the store. Boy did he have a major tantrum!!!! Poor Ron said there where 5 people in line in front of him before he got to the counter.  Can you imagine be one of those people, listening to a poor little kid crying and pleading please don’t return my books, I neeeed my books, don’t do it, don’t do it, no, no, no…. thinking just give your kid the damn books already!! In the evening there was some fibbing going on. something that seems to be a growing concern. It was also when the basement got flooded again 9second time in a week) by supposedly fixed broken washing machine. Leon was supposed to be in bed while Ron and I where bailing out the basement. Leon managed to sneak out of bed and watch TV. I didn’t make a big deal out of it, after all I can’t tell you how many times I did that as a kid and really there just wasn’t anymore fight left in me. Then later on we noticed that there weren’t as many cookies left in the container as there were before we went into the basement.” Hmmmmm, I wonder if Leon snucksome cookies”, Ron says. So I go investigate. I lean over Leon’s bad to give him a kiss, and I get a wiff of Chips Ahoy. I said “Ooohsomeone smells like chocolate chips, did you you sneak some cookies?”, “ummmm, yes”, “how come?, “well, because sometimes I just get hungry in the night”, so now I say, “okay, hand them over”, “hand what over?”, “the cookies you are still hiding”, “there aren’t any”, “oh yes there are, hand ’em over”, …he then says,”oh yeah, I forgot” and lifts his pillow up and there they are. crumbs and all -Aaaaarrrrrrggggghhhhhhh!

Sun 5/10 – Mother’s Day. What a nice day. Leon crawled into bed with me for a cuddle and to wish me a Happy Mother’s Day and gave me my gifts. I got two  books,  True Mom Confessionsfrom Ron, and a fill in the blank complete with drawings and coupons book from Leon. Both were very entertaining. Additionally I got to spend the day shopping (with Leon) while Ron cleaned the house  – BONUS!! Shopping with Leon went very nicely. Ron gave him a pep talk about it being MY day and to be on his very best behavior! It didn’t hurt that I bribed him. I told him he could earn back the books he had to return. It was very nice. In the evening Ron’s family and mine met for Hibachi dinner at a new place that just opened around the corner. I must say I really love Hibachi! Leon was very restless. He had gotten his books and was up to his usual shenanigans. First he grabbed a fistful of toothpicks from the front. When I took them from him he said “but I need them to trap mice”,  yeah well I really hope there aren’t any mice in the brand new 10 day old restaurant! Next, some how he managed to get a hold of at least half a dozen chopsticks (you would think I don’t watch my own child, but really I do …he’s just really quick). But once he had them I just let him keep himself entertained with them. Yes, I know bad mommy, but it was Mother’s Day and I just didn’t feel like being a drill sergeant for once, I was quite content to let one of the other 11 people handle it. At one point Ron catches him trying to carve his name into the wood railing with a chop stick. If you know where and what to look for you can just make out his name in the scratches on the wood. I just don’t understand what is going on with this kid!!

During the previous week we went to our local SEPTA meeting to see Dr. Yellin speak on ADHD. I liked him and his websitealot! It’s what started me thinking about getting an assesment outside of the school. What I don’t like so much is the price tag ($3650 eeeek). But something has to be done. Things are escalating with him and we don’t know why. I feel there are issues here beyond just ADHD. In addition to seeing Dr. Yellin speak, I have also been in contact with Dr. Petrosky, who was recommended by my MiL’s doctor. He was leading a parent workshop, and MiL offered to pay for one of us to go. I did not want her wasting her money ($150pp)  if it wasn’t going to cover the info we needed, so I made a call to get some more info. Boy am I glad I did. This man was so nice and personable, he took time out of his Saturday to speak with me for over an hour, he went over what he would be covering, he also talked with me about Leon and his situation, he also does psychological assessments as well, and offered to look at what tests Leon had already taken so as to help bring the cost of an assessment down. As far as the workshop he also was kind enough to allow me to bring Ron with me at no extra charge. I really like this guy!

Mon 5/11 – Just another regular ordinary day… if a regular ordinary day includes your son hiding under a seat on the school bus and refusing to get off? Yup just an ordinary day … I went to the bus stop to get Leon and heard a bunch of kids calling out that Leon was refusing to get off the bus and was hiding under his seat. What!!! He did eventually get off and when I asked why he didn’t want to get off the bus he said, “because I want to go on a playdate”. It’s his teacher, calling to let me know that Leon tried to sneak on to a bus other than his own. The teacher in the bus room realized that she did not recognize him and asked him where he was supposed to be. He very convincingly insisted that he was supposed to go home on the bus with his friend Rohit because they had a playdate. He was walked back to his teacher to find out the truth. She said, “absolutely not, he needs to be on his own bus”, so they sent him back he then tried to convince them that we had moved and I forgot to write a note, so he really did need to get on another bus. That’s my smart-ass kid for ya. I told the teacher I would handle it and we said goodnight. As for Leon, since Ron already took away his DS for the month, I was left with just a few options, I grounded him to his room and took away any remaining screen time (comp,TV, other handhelds).

Up to this point things were difficult to say the least. It was hard to see Leon go through all this crap, it was hard to deal with the lying, and to understand why he would steal even after given a chance to rectfy it. It was just one thing piling up on top of another. It was difficult to deal with for sure!!!

Then came Tuesday, the day I started writing this post (today is not Tuesday, it’s Saturday,it’s taken me 4 days to get it all out with all that’s happened). Tuesday was the day my panic attacks started having panic attacks. Tuesday was the day that anything could have happened to my poor child. Tuesday, the day that panic, anger, shock, fear, confusion, bewilderment, stress, and relief hit me all at once.

For my friends out there, who found out what had happened I am sorry that I just could not talk about it anymore. As shocking as it was, it’s not surprising that everyone wants to know what happened and that the response to it would be fierce. But there was no simple way to say it without it leading to more and more questions, and more and more conversation. And the more I talked about it and had to rehash the story the tighter my chest got, the shallower I could breath, the more rushed my words got the sooner I felt dizzy and faint, the more I thought about the what ifs the more intensely my head hurt. To the point that I just could not talk about it anymore. Over the course of the 2 days that followed the firestorm of calls and conversations about it was just too much for me and I finally broke down completely on Thursday. So that is why I am posting it here, fears and tears and all, so I don’t need to retell it over and over again. And it’s okay to comment and ask any questions you want, although it’s taken 4 days to get to the crux of my post, I have found that getting it all out in print is very cathartic. 

Continued on Blogging it out!! (Part 2) – The day the school lost my son

 

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