Just call me Jiji

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

Archive for the tag “Treatments and Medication”

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

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

English: A pair of kitchen scissors.

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

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

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

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

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

Ron answered “not yet!”, with a huff.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Nine Years Old and Already Breaking Hearts

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

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

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

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

and below….

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

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

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

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

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

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

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

ME: So tell me about it

Leon: I don’t want to

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

Leon: no

ME: is a teacher involved?

Leon: no

Me: a friend?

Leon: yeah…

Me: did someone get hurt or sick?

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

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

Leon: yes!

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

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

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

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

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

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

ME: what did you say?

Leon: nothing, I just fainted!

Ah the complexities of a fourth grader.

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

I had asked him if he had spoken to ______. 

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

Alls well that ends well!

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

and he is an AMAZING KID to boot.

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??

A Day in the Life of…FibroFlareGirl

AKA….. Test Results and Other Ramblings

Mmmmornin….

{Left the good in good morning out on purpose, btw}

4 pills with breakfast -YUMM

{sarcasm}

Wait a while to see if I am able to move more fluidly…

NOPE… Joints still poppin, can’t straighten up, numbness in hands and fingers, no strength in arms or legs.

{Crap! now how the hell am I going to get out of this couch?} 

Hmm Today is particularly bad

 {Again}

Okay bring on the Vicodine

 {Crap that’s 5 days in a row now – I must be flarin up again}

On with my day, cause life must go on….

{People to do and things to see and all that rot…} 

….feelin floaty and a bit dopey

{make that a LOT dopey} 

and some what embarrassed in public situations….

{ Is she talking to me?

 Wait what did she say? I spaced out for a sec,

 Was that question to me? Did I answer that already?

 Oh No am I repeating myself?

Oh No am I repeating myself?

Am I slurring out loud or is that just in my head? }

Made it through the day 🙂

{Barely}

Night comes – take 3 more pills at bed time.

{for those of you not keeping count thats 7 pills a day and then some as needed}

Good Night Moon.

{Good Night Bafoon}

Oh and by the way ALL my test results came back NORMAL!! Yay me!!!  ….There isn’t a thing wrong with me. Hoorah!

{ MORE sarcasm!} 

What the voices in my head are screaming….

I think everyone has a little voice in their head, that whispers quiet thoughts that are just for them and dare not be spoken out loud.

At least I hope that’s true, otherwise it’s just me with a voice in my head.

…and in my case, I think there may be more than one voice.

I definitely think I have a voice that whispers quiet thoughts to me; telling me right from wrong, thinking one thing but advising me to say another to spare someones feelings or keep certain things protected and private.

But there is another voice in my head, a voice that has been sounding off since as far back as 12 or maybe even earlier.

When I was very young my lips would betray me and repeat out loud what that voice would say in my head. But in my defense, I didn’t know better, my selfcontrol of such things had not yet matured, and besides that voice was always the loudest. In fact it was a screamer.

I think I developed that voice from my mom. In more ways than just one.

My mom’s inner voice seemed to always be spoken outloud and unfiltered for everyone to hear. It became the example for me early on. So nI got that voice from my mom and because of my mom.

And to this day, that voice, “The Screamer”, the one that only responds to my mother still screams out in my head from time to time.

This morning was one of those times. This is what the voices in my head where SCREAMING, this morning during a conversation over the phone with my mom this morning about how forgetful I have been getting and therefore I must be addicted to pain medication:

“Ugh, I am NOT addicted to pain meds; I am too forgetful to be addicted to pain meds, I can’t even remember to take them”

“…I don’t care what Dr, Oz says… Dr. Oz does not even know me. And neither do Dr. Phil or Oprah for that matter!”

“…STOP SHOULDING ON ME!”

“…I’ve been like this my entire life!!”

“…Hellooooooo… I have Fibromyalgia  and ADHD”

“…There are TONS of things I should do”

“…would you look in the damn mirror, and stop projecting yourself on me”

“…one newspaper article and an episode of Dr. Phil, does NOT an expert make”

“…just because you gave birth to me does not mean you know me”

“…maybe I am just forgetful because I am too damn busy and stressed from helping everyone else that I don’t have time for my own life, let alone remember what is going on in it!”

“ARRRRRGGGGHHHHHH!

And then comes the quiet whisper;

Can you believe this woman is going to be 70!?!?

“…Aww,  just give her a break, this princess is going to be 70 in just a few months”

And more importantly;

“… I LOVE you, Mom!”

 

Edited to Add; My mom does not read my blog (hmm… she might know me better if she did) But, to those of you who do AND speak to my mom – Let’s just keep this between us more computer savvy people, okay?

LENNIE – this means you too 🙂

HAPPY New Year!?!???

Well, I had to say it, didn’t I? This is after all my first post of 2011.

Thing is I’m not feeling’ so Happy New Yearish at the moment. It’s part of why it’s taken me this long to post something. It’s not that there haven’t been any happy occasions, events, or news to post about; there have actually, and I want to share them, especially because some very good things have been happening with Leon; it’s just that, well, I am just too damn tired (and in pain) to even think clearly. And not the I just have so much to do tired either. It’s more like the, just walking from the couch to the bathroom and back has me feeling like all my energy just drained out of me and I can’t move, type of tired.

There is no doubt about it; this winter is really messing with my fibro BIG TIME. Mother Nature and Jack Frost have teamed up to kick my butt!

Here is today’s forecast from the National Weather Center:

Winter Storm Warning

  • Statement as of 9:52 PM EST on January 26, 2011
    … Winter Storm Warning remains in effect until 6 am EST
    Thursday…A Winter Storm Warning remains in effect until 6 am EST Thursday.

* Locations… portions of northeast New Jersey… New York City
and southern Long Island.

* Hazards… heavy snow.

* Accumulations… 8 to 14 inches of snow… with locally higher
amounts possible.

* Winds… north winds of 10 to 20 mph with gusts up to 30 mph are
expected across New York City and northeast New Jersey.

* Timing… a wintry mix of snow… sleet… and freezing rain…
becoming a moderate to heavy snow this evening… and a heavy
snow overnight. Up to a quarter of an inch of ice this evening.

Special Weather Statement

    • Statement as of 1:13 am EST on January 27, 2011
      … Heavy snow will impact Bergen… Bronx… Essex… Fairfield…
      Hudson… Kings (Brooklyn)… Middlesex… Nassau… New Haven… New York
      (Manhattan)… Passaic… Queens… Richmond (Staten Island)…
      Rockland… Suffolk… Union… Westchester and western New London
      counties…At 1257 am EST… National Weather Service Doppler radar was tracking
      a wide band of heavy snow extending from northern Connecticut
      through Long Island and New York City.

Snowfall rates within this band are between 2 to 3 inches per
hour… but could be as high as 4 inches per hour in the heaviest
portions of the band in Nassau… western Suffolk… New Haven and
Middlesex counties.

In addition… gusty winds between 20 and 30 mph with occasional
gusts up to 35 mph will occur causing blowing and drifting
snow….and reducing visibilities to 1/2 mile or less.

Motorists should exercise extreme caution.

A Winter Storm Warning remains in effect for the area.

We’ve already had so many storms so far this New Year that I’ve lost count at this point and it’s only January.  These storms have been so frequent and so on top of each other, the effects of which are unbearable. It’s times like this that I am most aware of my Fibro …obviously!

Last week a friend got an up-close peak into my life with Fibro, when she stopped by to invite Leon and me over and found me curled up in a ball on the couch, with my head resting in Ron’s lap as I wept because the pain was that intense. I think it really took her by surprise. This invisible disability suddenly became visible.  Being the wonderful friend that she is, she took Leon so I didn’t have to worry about him seeing me like that.

I actually felt a bit embarrassed that she had seen me like that.

I know I should not be embarrassed by the situation but it is very rare for someone to see me with that bad of a flare-up, and in that much pain, and THAT vulnerable.

Not that I haven’t had flare-ups before in front of people. It’s just that, well, it isn’t always so blatant. The pain is always there alright, and occasionally someone will comment or make a joke about me walking like a crumpled up old women before I can straighten myself up, but usually it will go unnoticed. But Friday’s flare-up, that was something all together different that was what I usually refer to as a “lost in the pain” flare-up. One that gets so bad that I feel completely lost and consumed in the pain.

And with this icy cold, snowy, storm-filled winter I feel like it is freezing me in time and incapacitating me to the point that I cannot even function in my own life right now. I have been out of commission since this year began.  As a result not only am I suffering but so is my family.

The all over joint pain, headaches, fatigue (serious fatigue), insomnia, and muscle weakness keep me from being able to do normal everyday things, including taking care of my family. The burden then falls on Ron; my dear and wonderful husband. So now his life has been turned upside down too.

Not only does Ron leave the house to work all day, but when he is home he has to take care of the things I can’t.

Much to my dismay and intense gratitude he gets up early with Leon every morning without waking me up. He knows that mornings have always been difficult for me, but right now they are even more so. My insomnia has kept me up till anywhere between 3am and 5am on a regular basis. I am thankful because waking up every morning at 7am and functioning on all cylinders is practically unheard of.  I just wish I could do more in the mornings so Ron could get ready for work stress free.

Ron has to get himself and Leon ready at a time when Leon’s ADHD is at its worst. There always tends to be a battle whether it is about taking a shower, eating his, breakfast or getting dressed for school. I usually wake up to one or the other’s yelling or a phone call telling me, my sister is on her way with my niece, whom I care for while my sister is at work. Although, too often this year I’ve had to send her to my mom’s instead.

As it is I am no longer caring for Nico (my friend’s son), but now my fibro is forcing me to give up more days with Kiera too, making money even scarcer.

While taking care of Kiera can be extremely draining, I at least can nap when I need to, while she does. I just can’t see that being included as a benefit in a real job 😉 , so while money is scarce, I am lucky that my sister needs my help. The major downside then falls to Leon and Ron again.

Generally while caring for Kiera or any child, one would think I could keep up with the house work since I am home anyway. Unfortunately that just isn’t always the case, and right now because of the intensity of my flare -up and especially because of how long it has been lasting, there just isn’t any relief long enough for me to catch up on my housefrau duties. It’s embarrassing!

What is worse, is that rather than let it all pile up, Ron jumps in and picks up the slack. It makes me feel so guilty, because I can see it is taking a toll on him.  The getting up with Leon, and battling him to get ready for school while preparing his breakfast and packing up his lunch, and sticking him on the bus; then he has his job to contend with; only to come home and have to contend with me, who is thoroughly exhausted and mostly immobile from the pain and Leon whose meds have worn off and is talking a mile a minute, bouncing off the furniture, and vary needy at this time of the day.

On my normal days, flare-up or not I would have at least pushed myself  to clean up after the day’s activities, get the dishes done, have Leon’s homework done, fed him and ready for bed by the time Ron got home so that he could at least enjoy himself with their ‘Daddy and Leon bedtime routine’. I’ll be honest, I rarely get all of that done, especially during flare-ups, but I do my very best and depending on the severity of the day I have gotten quite a bit of it done. But right now it’s as if my tush has been glued to either the couch or my bed. Basically I’ve been bedridden (or couch-ridden as it were) since the year began, and if the weather keeps up this way I don’t see it getting any better anytime soon.

I worry about the strain it puts on Ron. Add to that the struggles we face financially at the beginning of each year because of how our medical insurance is structured. Between Leon’s ADHD/ODD meds and my Fibro /ADD meds and our regular doctor visits, we have to come up with a lot of cash in a very short amount of time because we have a $2500.00 deductable to meet. That’s not an easy thing to do when living paycheck to paycheck. This is the time of year when our bills pile up. So on top of the strain my fibro puts on Ron he has this to deal with. Now add to it the fact that Ron’s car has died and can no longer be driven, so he has to use my van until we can afford a new car. At least with me pretty much being bed-ridden I can do without the van for now.

The guilt and the depression that comes with it weigh very heavily on me. I feel responsible for Ron’s stress, and I worry about his health.

So with all that, it hasn’t felt very Happy New Yearish   ….yet

As I said before there have been a few highlights to the year so far, involving Leon, so not all is lost.

But that will have to wait for another day.

HAPPY NEW YEAR!!

An Open Letter To Those Without Invisible Disability Or Chronic Illness

While surfing the web I caught sight of this really wonderful letter that expresses much of what I feel  and go through. So I wanted to pass this on.

My comments are in purple, clarifying how I feel personally about what is being said in this letter and how it pertains to me.

An Open Letter To Those Without Invisible Disability Or Chronic Illness

 … by Ricky Buchanan

Having an invisible disability (ID) and/or invisible chronic illness (ICI) means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.

Most people don’t understand much about these disabilities/diseases and their effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand …

… These are the things that I would like you to understand about me before you judge me…

Please understand that being disabled/sick doesn’t mean I’m not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

I to try to be carefull in what I do. Somedays I am doing just fine, while others I have to struggle to get through my day. My mood can reflect that. I don’t mean to let it get in the way of things, but I am only human.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome

Amen to that. I sometimes find it difficult to answer the “how are you doing?” question. The typical answer for most people would be “I am fine”. Me, there is no typical. I could be dealing with major pain all throughout my entire body or it could be minor discomfort from a dulled pain in my joints. The pain is almost always present, but I have dealt with it for so long that I’ve learned to endure the minor aches and pains and push through the major ones. So, if you ask me how I am doing, fine doesn’t really cover it. Fact is, I could very well be having a grad old-time and enjoying myself, and all the while the pain, fatigue, and discomfort are still right there beneath the surface. So on the one hand the part of me that if enjoying whatever it is I am doing, but on the other hand, if I stop and focus just on the pain, I am not doing well at all.   

Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either.

While I have had days like this, where I have to sit or lie down even every 15 to 20 minutes or so because whatever it was I was trying to accomplish has left me exhausted and fatigued, it isn’t a daily occurence. Days like that tend to happen when I have a lot going on and I push myself. It generally occurs around the holidays or in planning something big like a party or a trip. When I do have these days it is usually in private. I don’t like people to see that part of my illness. I guess I worry about being judged as lazy or weak, or incapable.

Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything that I do.

All of these are true for me as well, especially the thinking and being social part. Fibro fog and focusing issues dull my senses and thinking straight isn’t always an option. If I am not answering the phone or accepting invitations to go out, it’s because I just can’t; it’s not personal

Please understand that the effects of chronic illnesses and many disabilities are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the bathroom and back, while the next day I’ll have trouble sitting up. Please don’t attack me when I’m worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you.

Similarly, my illness/disability may vary suddenly, meaning I may need to cancel an invitation at the last-minute, if this happens please do not take it personally.

I have had my share of days like this as well where just getting to the bathroom is a feat in itself. Mostly I can manage to function just fine with minimal pain (but pain none the less) through out the day, but when evening hits that’s when you will see the difficulties the day brought with it. That’s when you will see me struggling just to get off the couch and shuffling across the room stooped over in pain to get the bathroom. 

I used to ignore the need to cancel plans and I would go anyway, and usually end up paying for it for the next day or two. But lately I have found that the need to cancel happens more often now that I am getting older – I tend to  listen to my body more now and choose to take care of myself better, so if I’ve canceled and been a no-show on you; now you know why. 

Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Chronic illnesses/disabilities may cause a secondary/reactive depression (wouldn’t you get depressed if you were stuck in bed 23 hours a day for years on end?) but they are not caused by depression. Telling me that I need some fresh air and exercise is not correct and probably not appreciated – if I could possibly do it that, I would.

My disability does not keep me bedridden, but I do have good days and bad days, and quite often my bad days can lay me out for 2 to 4 days in any given week. Certain times of the year are worse than others depending on the stressors. Stressors include weather, seasons changing, being over-zealous on one of my ‘good’ days, emotional or mental stress, hormone spike, among other things. So if I say I am not up to it… trust me I am not up to it.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.

This is something I know all too well! I am famous for ‘forgetting’ to take my medications and for pushing the envelope on those ‘good days’. Quite often it is because I am involved in something far more enjoyable. I am very guilty when it comes to pretending I am a well person. this goes back to not confusing happy with healthy.  I often have to remind myself that just because I feel well does not mean I am not sick.  

Please understand that I can’t spend all of my energy trying to get well from my incurable chronic illness/disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability is coming to the realization that you have to spend energy on having a life while you’re sick/disabled. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness/disability.

I get this. So often people ask, so what are you doing for your fibro? Well, I am living with it. There is no cure, there is only managing it. I take my meds, I’ve started walking regularly, and I keep my chin up.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.

With everything that I have gone through, first with constantly being told that there was nothing wrong with me or that it was all in my head (this is going back 17 years when Fibromyalgia was considered – not a real condition – by many doctors); and then going through all the trial and error of finding the right prescription cocktail that would not make me feel worse; I am reluctant to try something new. I did however switch to Lyrica about 6 months or so ago and it is work to help manage it a bit better.

If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don’t expect me to rush out and try it. I might not even reply. If I haven’t had it or something like it suggested before, and it sounds reasonable, I’ll probably take what you said and discuss it with my doctor.

I don’t mind the suggestions at all as long as there is no expectation that I will run right out and try it. Chasing after this disorder is time-consuming and exhausting and in my eyes a bit of a waste of time. If there was a cure, something that would make it go away entirely and permanently then hell yeah, I’d be right on top of that. But all there is, is management and that is what I am doing. As long as I have found something that works that I can tolerate i am going to stick with it until it does not work anymore. i rather be living than chasing down my illness. 

Please understand that getting better from an illness can be very slow. And getting better from an invisible disability might not happen at all. People with chronic illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.

I depend on you – people who are able-bodied – for many things.

But most importantly, I need you to understand me.

My Superpower is Invisibility

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

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

I have invisible disabilities.

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

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

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

But wait, there is more…

There are other symptoms that are not mentioned….

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

Those are currently, my additional symptoms, at least.

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

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

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

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

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

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

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

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

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

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

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

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

I’ve been feeling that A LOT lately.

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

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

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

What does all this have to do with invisible disabilities?

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

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

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

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

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

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

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

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

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

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

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

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

Nope but she is feeling a little invisible right now.

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!

Making Accomidations

In my previous post A GOOD START I made mention of a letter I had written requesting certain accommodations to be considered for my son’s 504 plan as well as an introduction letter to the teacher on his first day of school. I received an email shortly after asking me about the details of what I had included in both.

A year ago I could have written that email myself making the same request. When it came to attending our first CSE (Committee for Special Education) meeting a few years back, I had no idea what to expect. I did my homework and looked up various articles explaining the process, and while they were plenty helpful, the one thing I did not find was how to or even what to ask for. All I really wanted was an example to follow. I was at a loss.

Last year, the parent trainer assigned to us by the school suggested I check out FAPE’s Accommodations and Modifications Publication for ideas on what I would want included in Leon’s IAP (Individual Accommodations Plan). It was really great advice. I read through it and pulled from it what I needed and wrote a letter specifying my wishes. I used Leon’s name often and personalized my requests  and then at the end of the letter I included a photos of Leon. I did not want my son to be just another name in a file. I wanted them to know his smile and see the twinkle in his eyes.

When Leon started his first day of 3rd grade i put a copy of my request in an envelope with a letter of introduction to his new teacher.

I remember reading an article somewhere about how to make the first day of school a bit easier on your child; and one suggestion was to write a letter to the teacher introducing yourself and your child, along with some interesting info about your child; their likes, dislikes, hobbies, etc…

I took this advice back when Leon started kindergarten and have been doing it ever since. Not only do I think it helps the teacher to understand Leon, but Leon is a bit more at ease when the teacher acknowledges not just him but something that is of interest to him. He warms up a lot more quickly and is more engaged. I love this idea for any student, but for Leon who has special needs because of his ADHD/ODD and emerging sensory issues, I love it even more. And to make things even more personal I have always added a picture, either one he drew or a photograph of him.

Below is a copy of what I sent Leon to school with on his first day of 3rd grade. It’s very lengthy, and chock full of info. Perhaps too much so but it’s what has worked for me. As far as I am concerned I really believe that when it comes to my son and his issues; the more a teacher knows, the better things will go.

September 7, 2010 

Dear Mrs. L,

 I would like to introduce myself, my name is Jill  and I am Leon’s mother. Leon’s father, Ron, and I look forward to meeting you and working closely with you this school year in an effort to make Leon’s experience in 3rd grade a good one. I wanted to give you a little insight about Leon that you may find useful. It is my hope that this will be helpful to you.

 Leon is a terrific yet challenging child. His mind just works differently than the rest of us. He thinks differently, he sees things differently, he hears things differently, and he does things differently.

 Leon was diagnosed with ADHD-combined in May 2008 and also more recently with ODD (July 2009), I suspect he is also SPD-proprioceptive. Currently we are working together with his pediatric neurologist to stay up to date with the best medication plan for him. At this time he is taking Concerta 54mg in the mornings and Clonodine 0.1mg in the evenings. Side effects you may want to be aware of include dry mouth, headaches, stomach aches, dizziness, drowsiness, anxiety, irritability and blurred vision. Please let me know if you notice any of these side effects.

Leon has a wonderful personality and is so full of life that it bursts out of every pore in his body; he is loving, caring, and sensitive to others. Leon is highly energetic, and is always looking for an adventure, he’s very inquisitive and resourceful. He is curious about everything around him; he’s got an amazing imagination and can be very inventive. He is also full of ideas and loves telling stories. He loves to create and invent ‘stuff’; he is an artist and an inventor. He has a thirst for knowledge and is way too smart for his own good. Leon loves to read and wants to know everything about everything, He’s fun-loving and very expressive. He’ll keep you on your toes and keep you laughing. Leon is also a master negotiator. He will try to talk circles around you. He yearns to please and to be accepted and will go that extra mile (sometimes too far) to get someone’s attention,  He always seems to notice things that others take for granted, he has a great capacity to remember the oddest things (as long as it is ‘not boring’, to him). Leon is an extremely bright child with a mind of his own and he is not afraid to use it. He is the most well-behaved when he is engaged and interested in what he is doing, when his needs are being met with immediacy, and when he is being recognized and praised not only for a job well done but also for his effort.

 I have attached some helpful hints about Leon, as well as; the request that I had submitted to Mrs. N back in June 2010, for specified accommodations and/or modifications to be considered and included in his 504.

 Please contact me at your earliest convenience to arrange a time that we can meet, to discuss a plan for Leon this year.

 Thank You,

Jill

Email:

Tel:

**

Some helpful hints about Leon :

 

Leon does much better in a structured environment. In less structured environments (i.e. gym, lunch, and recess) he tends to lose some control and can give in more easily to his impulses if not frequently redirected. 

Immediate feedback, reward, and praise go a long, long way with Leon, re-enforcing good behavior and his self-esteem. He is very self-critical, which often results in bad behavior or is reflected in his work.

A clear understanding of the consequences for undesired behavior will help Leon stay on task, as will frequent reminders of possible rewards for attaining certain goals.

Leon needs very specific, detailed instructions and rules given to him frequently and step-by-step throughout his task. It helps to have him repeat the instructions back to you, so that you know he heard and understood them.

Checking in with him often and encouraging him while he works will help him stay on task.  He will need reminders to not rush through his work, just as much as he will need reminders to keep working, as he gets distracted and bored very easily,

Leon does yearn to please, so allowing him to participate often and giving him something active to do (i.e. handing out papers or supplies, running an errand to the office, line leader, etc.) can help channel his hyperactivity while improving his self-esteem.

Leon gets very easily frustrated with himself and certain situations, because he has yet to fully master control over his impulses and doesn’t always know why he does the things he does.  It will often be expressed in the form of anger, whining, or tears. Occasionally he lashes out physically at objects around him.

Leon gets very easily overwhelmed when he perceives things to be “too much” (i.e. too many problems on one page, too much homework, too large a mess to clean up, etc.)

Extra time and patience may be required to listen to what Leon has to say.  He is very expressive but it can take a bit longer for him to get his sentence and his thoughts out.  

Reminding him and preparing him in detail for what comes next will give him time to adjust his behavior as needed.  He will need a few reminders of what the desired behavior is.

Leon has quite a bit of difficulty keeping his hands to himself. He does not recognize personal space or social cues. This can create friction with his peers if not re-directed and watched carefully.

Keeping his hands busy with something constructive and keeping a watchful eye on him is key. He often takes things he should not have and uses them inappropriately. (i.e. Scissors to cut his clothing). Keeping such objects out of his reach is important to keeping him out of trouble.

Leon gets extremely hyper-focused. This is quite often a good thing but it is just about equally as much a problem when he hyper-focuses on something negative. He will grab on to something and get stuck in it. Getting him to let go of something he is truly hyper-focused on can take some doing.

Leon is a Terrific Kid with tons of potential to go very far in life! He is deeply loved and has a huge support system behind him all the way.

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

 

Revised September 7, 2010

To Whom it may Concern;

 On behalf of our son, Leon, DOB 00/00/00, we are requesting the following accommodations and/or modifications be considered and included into his Section 504 plan for the school year 2010-2011.

 Curriculum:

  • Specify and list exactly what Leon will need to learn and do to pass. (this includes – completing his assignments and taking pride in the work) Review frequently.
  • Allow Leon to work on problems or assignments that are slightly more challenging when he is bored.

 Leon needs to be reminded of where he stands and what is expected of him regularly. He has difficulty with things he finds boring or too easy, conversely he has a fear of failure and therefore is resistant to things that he deems, too hard or overwhelming.

 Books:

  • Provide Leon with, or allow him to bring in reading material that is at or slightly above his reading level to read in between assignments if time allows.
  • If available provide a second set of textbooks for Leon to keep at home.

 Leon is a veracious reader and has an incredible thirst for knowledge. Allowing him to read in between assignments may keep him from disrupting the rest of the class. Leon also often forgets to bring home the appropriate materials to complete assignments.

 Classroom Environment:

  • Give repeated reminders to Leon to keep his work space clear of distractions and unrelated items.
  • Seat him away from windows or doorways, and other distractions
  • Keep extra supplies of classroom materials available, in a separate location (pencils, erasers, paper,etc)
  • Allow for fidgets, to feed his need for movement yet helps to keep him focused (spinner ring, bendaroos, Velcro strip on the underside of his desk)
  • Take away items that are used inappropriately or that become a distraction.

 Leon can be easily distracted when a lot is going on around him. He also has a need to touch and hold things that are within reach. Allowing him, with limitations, to have something to manipulate with his hands gives him a bit more control over himself. Leon should be observed carefully when using scissors, He has a tendency to use them inappropriately (i.e. cutting his clothes, books, folders, etc.)

 Directions:

  • Give clear and precise instructions to Leon in small steps. Remind him not only of what he must do, but also what he must not do. (“Leon do not begin until I have finished giving my directions” or “take out only one pencil”)
  • Have him repeat the directions for a task back to the teacher, aide, or for the whole class.
  • Give reminders to stay on task and check his work.

 Leon has a tendency to shut off (and often walk away) in the middle of what is being said to him. He needs reminders to listen all the way through. Repeating the directions back insures Leon has not put his own spin on what he is supposed to do.

 Time/transitions:

  • Let Leon know that certain tasks require a certain amount of time and should not be rushed through.
  • Remind him to slow down and take his time, to avoid careless mistakes
  • Let him know a few minutes before a transition from one activity to another is about to take place, give several reminders.

 Leon often rushes through everything. He needs repeated reminders to slow down and take his time. Leon also has the tendency to get hyper-focused; in which case transitioning from one task to another becomes a challenge.

 Handwriting:

  • Provide a print copy of assignments or directions written on the board especially for home assignments.
  • Allow use of computer for longer written assignments such as short essays or book reports.
  • Provide visible acknowledgement based on Leon’s progress and effort for handwriting (to be reinforced at home with reward).
  • Allow Leon to rewrite illegible answers, or answer orally for a better grade.
  • Remind Leon to write with pride and care, and not to rush

 Leon rushes through his work, his thoughts come and go quicker then his hands can move. He has the ability to write very clearly, when he takes his time. Leon is motivated by praise and reward.

 Grading:

  • Allow Leon to rewrite illegible answers, or answer orally for a better grade.

 Tests:

  • Provide Leon with reminders to take his time and to recheck his work before handing it in.

 Leon often makes careless mistakes when rushing or overly confident.

 Behavior:

  • Pair Leon with a student who is a good behavior model for class projects.
  • Use nonverbal cues to remind Leon of rule violations
  • Minimize the use of consequences; provide positive reinforcement as well as negative consequences.
  • Increase the frequency and immediacy of reinforcements
  • Develop a reward system that can be carried over in the home as well as at school.
  • Develop a system or code word to let Leon know when his behavior is not appropriate. Allow him to correct himself.
  • Develop interventions for behaviors that are annoying but not deliberate (i.e. the use of fidgets)
  • Be aware of behavior changes that relate to medication or the length of the school day; modify expectations if appropriate.
  • Create a checklist for Leon so he may self regulate and be in control of himself.
  • Remind Leon to speak in a respectful and friendly tone. Praise him for expressing himself appropriately.
  • Remind Leon that he must not chew on inedible items (pencils, staples, clothing, etc)
  • Remind Leon to speak slowly and clearly, and with a friendly tone.

Leon has a strong need to be independent and do things his own way. He responds very well to praise and positive reinforcement that is immediate and frequent. Leon’s emotions run very deep, when they get the best of him he has a very difficult time expressing himself in a tone and or manner that is respectful and appropriate.

 Parent/Teacher Communication:

  • Make use of a daily or weekly communication journal to keep the lines of communication open with parents.
  • Inform Leon’s parents of any allowances or consequences that have changed.
  • Inform parents of any changes in behavior that may be associated with Leon’s medication so adjustments can be made.

 The communication journal allows us to stay informed about Leon’s progress and monitor if his medication is working or needs to change as he gets older. It also gives us a clearer prospective on what behaviors he needs to work on, in school and/or at home.

 Thank you for your time,                   

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.

Please just GO AWAY!

Dear Headache,

Please just GO AWAY!

You just can’t seem to take a hint, I throw things at you like medication and OTC pills; I try ignoring you by sleeping, with the hope that you would just go away; I’ve fed you, thinking that maybe it was just hunger keeping you around; and given you gallons of water in case it was just dehydration. 

 And still you are there.

Please just GO AWAY!

Seriously we’ve just got to stop meeting like this.

You’ve become way too predictable. You are there when I go to bed. You are there when I wake up

Please just GO AWAY!

Don’t think of this as a break up, after all it’s not like I ever liked you in the first place!

Please just GO AWAY!

I know you think that you’ve got all the power and that I could never get over you!

But I am done! Really, really done!

NOW PLEASE JUST GO AWAY!  (or else!)

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