Just call me Jiji

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

Archive for the tag “social skills”

From One Differently- Abled Child to Another

My Wild Child

Leon is 9 years old and he has Asperger Syndrome /High Functioning Autism. He is an extremely  bright boy with big ideas and an even  bigger heart.

One of  the many wonderful characteristic of Asperger’s is Determination, and he’s got  plenty of that.  When Leon has is heart set on something, he cannot be derailed. When Leon was in 1st grade, he watched a video presentation in school about St. Judes Children’s Hospital, on that day he decided he wanted to help the kids of St. Judes, because, in his words, “I can help kids who are really, really sick” .  He then told me he wanted to cut his hair

In 2008, sporting his blue mohawk

(which was  Mohawk  at the time). When I asked him why, he said “because, I want to donate it to the ones that are bald”.

  Leon has not cut his hair since and that was back in 2008. In that time he has been teased, mocked, and bullied by other kids. He is often mistaken for a girl. But Leon takes it all in stride. He simply explains to those patient enough to listen, “ I am not a girl, I am a boy. I am  just growing my hair to donate to St. Judes Kids”.

In 2011, we found out that there was no guarantee that his donated hair would go to a  St. Judes Child. In fact it was unlikely. This did not sit well with Leon at all. He was very upset in fact. Although he knew that his hair would still go to a good cause, it was the children of St. Judes and their story that had touched his heart.

This is why he began hosting the “Leon’s Locks for St. Judes Kids Fundraiser”. It was important to him that he still do something for St. Judes Kids. Leon set his goal quite high, at $5000. We know it is a long shot but we have always taught him to reach for the stars and to believe in himself.

We worked together as a family to get donations where ever we could. His father and I reached out to our contacts via email, Facebook, and this website.  We also had cards made up for Leon to give out when the opportunity presented itself.

Leon’s Story Card

He gave them out to friends and their parents, at birthday parties, and communions. We carried them with us where ever we went. We even had a pin and a T-shirt made that said “ask me about my hair”.

Then when asked he could tell his story and give out a card. This worked out very well, because Leon did not always feel comfortable approaching people he did not know. But when asked he was always more than happy to tell his story about why his hair was so long. He spoke to people on the train, in restaurants, and we even hung out in Times Square for a while, giving out information cards.

Times Square NYC


.Both his dad and I are very proud of how much bravery and confidence he has shown when approaching and being approached by others. We love how much partaking in this, has helped him improve on his social skills, something that is greatly hindered by his Asperger Syndrome.

Being a part of this fundraiser has helped us grow in so many ways, both individually, and together as a family.

Tomorrow, July 7 2012, we will celebrate with our friends and family at our Annual BBQ that we have every year in July. At some point in the evening Leon will cut his hair for donation to “Locks of Love”. And while we  are happy to report that since Leon began this fundraiser in March 2012 , he has raised $1385.00;  we hope to continue in spreading the word and getting more people to donate to his fundraiser for St Judes Children’s Research Hospital.

Folks can donate with a credit card via this link https://waystohelp.stjude.org/sjVPortal/public/event/page/displayEventPage.do?sectionStyle=subMenuFour&eventId=310924&programId=2002

Please forward and share this story as much as possible!!

Leon’s self portrait


Has it been a year???

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

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

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

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

Here goes:

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

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

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

Not only did Leon made Santa’s List –


 …but the principal’s too!!!!!

Here is a little background:

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

All Hail the DS!!!!

I used to be one of those people that said…

I’ll never do that with my kid!

Then I became a mom…

The lesson is, you really can’t predict what you will or won’t do until you are actually in that position or situation.

Here is one example:

I was never going to give my child a pacifier… my reason’s were my own. I believed it would interfere with breastfeeding or ruin his teeth,  I worried that he would get too attached and it would be too hard to get him to give it up, and I was afraid that I would abuse the power of the pacifier.

See how well that worked out:

Leon chillin' at the beach - 6 months old

Leon chillin' at the beach - 6 mon. old

Leon had breast milk till 7 months, his teeth are fine, he did get attached to it for a bit longer than I had originally planned – but so what, and yes – I did abuse the power of the pacifier.
Cranky day? = Put a plug in it.
Too loud at church, screaming in the grocery ailse? = Activate the mute button.
Not feeling good? = Here, the Schnully makes it all better!
The pacifier, pacified him, kept him quiet, and comforted him.
What more could a mom ask for?
Another example:
I was never… going to join the masses and get my child a handheld computer game, just so he could retreat into a corner and be consumed in his game and be all anti-social and stuff. It is hard enough to limit screen time between the TV and the computer. Why would I want to battle with one that can go anywhere, anytime?  The me I want to be, wants to limit screen time to under 2 hours a day. The me that I am… well, let’s just say it doesn’t always work out that way. We do limit his time, and we let him earn extra time occasionally, but there are plenty of times that the TV or computer was is used to keep him quiet, pacify him, and babysit him while I got  get stuff done around the house. I justified it with, we only let him watch carefully picked DVDs and shows with some educational value (ie.  Baby Bumble Bee Vocabulary Builder or shows like Dora the Explorer vs. the likes of Spongebob), heck he didn’t even see any commercials because we choose commercial free stations, and on the computer, he only played games that he could learn from. 
….Then I bought him his first handheld. It was a Leapster L-Max, an educational handheld computer learning system with game cartridges that can plug into the TV or be portable. For me the justification was, he is learning and we never let him take it anywhere except for on a plane ride.  I looved that thing, he really did learn from it. Annnnd maybe I did let him take it out every once in a while, say ….. to the doctors office, or while grocery shopping. 
Okay so it’s present day now…  give or take about a month- okay so I am actually talking about Nov ’08…..
Being almost 6 years old and in first grade, Leon has been exposed to alot more media now. We’ve started letting him watch more “bigger kid” shows on regular channels, exposing him to the wonderful world of commercials which he can recite word for word to me ( It’s quite embarrassing when we are shopping and he picks up a box of Always Pads and asks me if I know how absorbent they are?) In school, his friends discuss superheros and bad guys, Power Rangers, Spongebob, Ninja Turtles, weapons, etc… They mimic the characters they see on TV. They pretend to shoot and kill each other ( i just lovethat!=sarcasm). They watch movies during recess on rainy days that gave him nightmares. ( I LOOOVE Disney, but some of their movies are down right SCARY! – ever see “Snow White” or “Meet the Robinsons“?). They talk about their Nintendo DS and the games they play. Leon returns from every play datebegging for one. When we took him to Karate he plants himself next to the nearest zombie playing Mario Brothers or Spore Creatures until it was time for class to start.
And then there was the upcoming Disney World trip with a hyper-active, impulsive, ADHD child who could completely loose it if made to wait in really long lines. I decided to give in and get him a handheld that we could use to keep him occupied while on the long lines.  I wanted to get him the Leapfrog Didj. It’s a Leapfrog, it is compact, it is educational, and it has this awesome feature that allows the parent to plug the handheld into a computer and create custom questions in spelling and math to help the child study for next week’s test. Sounds great doesn’t it? Well, I wouldn’t know, I tried to convince Leon to put the Didj on his wishlist. He was not having it. But “Mooooom, everyone else has a DS, and besides, I don’t even know how to play a Didj”. In the end Ron and I decided that maybe it was best to follow the herd and get him the DS after all. It was a decision in the favor of developing him socially as opposed to educationally.

Present Day…

Leon is very, very, happy with his DS. We use it as a reward for good behavior, and doing chores, we use it as leverage when we need him to comply with us, we use it to keep him occupied when we need to get stuff done, we use it soothe him after a rough day at school. Basically it is our new pacifier!  It keeps him pacified, keeps him quiet, and comforts him.

 What more can a mom ask for? Except to borrow it when he’s not using it.
All Hail The DS!
……. and now he wants an XBox and a Wii

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