Just call me Jiji

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

Archive for the tag “special needs child”

Nine Years Old and Already Breaking Hearts

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

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

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

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

and below….

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

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

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

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

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

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

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

ME: So tell me about it

Leon: I don’t want to

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

Leon: no

ME: is a teacher involved?

Leon: no

Me: a friend?

Leon: yeah…

Me: did someone get hurt or sick?

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

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

Leon: yes!

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

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

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

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

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

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

ME: what did you say?

Leon: nothing, I just fainted!

Ah the complexities of a fourth grader.

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

I had asked him if he had spoken to ______. 

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

Alls well that ends well!

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

and he is an AMAZING KID to boot.

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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.

A Good Start

 

Half way into October and I am amazed how quickly time has flown, since school started this year back in September.

Looking back at Leon’s first 6 weeks of 3rd grade, I can’t help but smile. I am delighted at how things have gone so far. We have his IAP in place, he has possibly the very best match in a teacher that I could ever hope for, he has come to terms with having a Para following him around all the time, his confidence is up and he’s doing great, and dare I say it? He may actually like school.

I’d never say that to his face of course. He’d deny it all the way up, down and sideways; for sure. But I can honestly say that I have not heard the words “I HATE SCHOOL” in at least 4-5 weeks. And considering it was his daily mantra all last year and every so often over the summer whenever school was mentioned, I’d say that is amazing!

I’d say it’s due to a good combination of things. The first being how much he seems to have grown over the summer. He’s taller, yes, but I am talking about how much he has matured. He turns eight next month and I am just amazed at how grown up he is all of a sudden. The way he talks, the way he carries himself, the way he relates to others, the way he thinks… He is growing up right before my eyes!

Once he was my baby boy snuggled up in my arms, then he became my big boy, holding my hand to cross the street, what comes next?  As much as I want to hold on to his hand until the end of time, I know I’ll have to let go someday. Seeing how mature and wise he is becoming, I know he is well on his way. It makes me so proud and yet so sad at the same time.

I also have to give credit to the school itself. There have been a lot of changes at our school. The usual changes that are imposed on schools, like standardized testing, and the like, of course. But also a lot of changes to what is being offered to the students both academically and socially. Last year our school got a new principle, and if you’ve read any of my previous posts you would be right, if you’ve come to the conclusion that I’m not missing our old principle.  She wasn’t mean or anything, she was just very uptight, and stringent, she was set in her ways and very resistant to …fun and lightheartedness. My one real qualm with her personally was, her suspending Leon from school when he was in 1st grade for managing to get off school property and walk all the way home unsupervised rather than penalize the people responsible for allowing the whole thing to happen in the first place. In the end officials were called and things were rectified, but her poor judgment has forever left a bad taste in my mouth. I still have nightmares about the whole situation. It was a very scary time for us, one that I admit still haunts us all.

Our new principal is a breath of fresh air! She has brought so much change to the school in the year that she has been here. She has made school more enjoyable without sacrificing it academically. Learning has become fun for the kids, parents feel more welcome and are able to be more active in their child’s schooling, and there is a larger sense of community since she has taken on her role as principle. Leon enjoys the extra touches of lightheartedness that she brings to the school. Things like spirit week with crazy hat day, or costume parades on Halloween, or even the start of a student council for which he was eager to try out for. Her incentive programs have touched Leon personally, last year he was “Caught Being Good” twice, and plans to get caught again. And just last week he came home with The Star of the Month certificate, of which he was very proud.  He is enjoying his school so much more now that it has become a fun place to learn.

Add to all this, a terrific teacher, and Leon can’t help but LIKE school. Again I wouldn’t press him on that, but when asked about his teacher he will out-and-out tell you “She’s nice, I like her”. For him to think it and feel it is one thing but for him to actually say it, that’s quite another. His standard responses to most questions about how he likes something or someone are usually a very indifferent “it’s okay” or “fine” type of answer. I have to say though I very much agree with him!!!

Leon’s first day of school always brings out a teeter-tottering of emotions and nervousness in me, but for some reason his starting 3rd grade was especially nerve-racking. I guess it’s because everyone always talks about how hard school becomes in third grade. More is expected from students, responsibilities get larger, homework assignments take longer, more activities; like chorus and orchestra take up more of their precious time. Life for a third grader gets a bit more demanding.

Demanding…. Now that’s not something that fits well into the life of an ODD/ADHD child. Demanding, is something that Leon’s teacher is not! Accommodating, nurturing, open minded and open-hearted, those are words that I would use to describe her teaching style.

I was so nervous about Leon starting 3rd grade that I sent him to school on his first day with a big fat envelope stuffed with 5 type written pages about Leon. Yea…I know it’s a little much. The envelope contained a letter from me introducing myself and Leon, along with a page of helpful motivators and techniques we use with Leon to help him stay in check and last but not least a copy of the accommodations that I wanted included in his 504 IAP. Of course when I sent all of that in with him on the very first day of school, I was worried about what she would think; would she be receptive… would she resent being bombarded on the first day?  I didn’t know how it would be received!  

I was very, very pleasantly surprised!  She was very receptive.  Not only did she respond in a letter, (a real letter, not a just a short note), but she also called me in the evening from her home. That definitely earned some big time points with me. She took time out of her own day to reassure me about my child. Awesome!

I met her in person at the school’s open house; in which she took even more time with both Ron & I, one-on-one, to sit down for close to an hour to discuss a plan for Leon. I was blown away. And I left there so reassured.

Nothing has changed since then. I still love his teacher, his principle, his school, and of course my kid!

And dare I say it one more time?  …I think Leon may actually LIKE school! 

But shhh… don’t tell him, it’s a secret!

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