I spend a great deal of time trying to balance my desire to save and protect my son and trying to let him forge his way in life. It's not an easy task for any parent with any child but with a child with special needs, it can become all consuming. We had a meeting the other day at the school (which I will try to post more about later) and for the most part it was good. I advocated for my son, at times very strongly, and it felt good. What didn't feel so good was the realization that there were a couple of people sitting at that table that really weren't part of our "team". They don't, at least right now, "get" my wonderfully spirited boy and I worry that their demeanour and approach to him will do more damage.
With the one individual, she has little contact with C but could negatively impact his school experience because she is a "professional" from the board office whose philosophy on how to "deal" with my son's behaviour just doesn't match my own or most of the rest of the team either. She's the "expert" though so I am wary and will be on my toes when it comes to her involvement. The other person has recently begun to have direct contact with C every afternoon, which is the time he struggles the most. I believe that she believes wholeheartedly that she knows what she is doing and that what she is doing will prevail in the end. I know my son, I know all the people that have come before her. She will not prevail but in the meantime I worry that my beautiful C will deteriorate and suffer more because of this.
I need to be clear here. My C is struggling in huge ways right now. I know it cannot be easy for the school - it's not easy for anyone, especially C. I do not for a minute believe that these "non team players" are in any way causing the issues we are dealing with. I do believe that they are not helping the situation and in fact, may be making this whole thing a whole lot bigger than it needs to be. The good news in all this is that I have found some peace and comfort in knowing that I have a good overall view of what is going on and I will pull him from school or fight higher up if I need to. I will NOT let anyone punish him for things that are beyond his control right now. My last week of work is next week, if need be I will keep him home. I will not allow him, me or my family to be held hostage. That resolve feels good. I hope it won't come to that.
Saturday, March 29, 2008
Thursday, March 20, 2008
Houston we have lift off!!!!
I received a call 20 minutes ago from the school - I almost didn't pick up, I thought for sure it would be some sort of "problem" and with it being Good Friday tomorrow I really didn't want to deal with it. But, I picked up. That will teach me to be such a pessimist. It was his teacher Ms. M wanting to tell me what a wonderful week C had. She talked about purposefully giving him "missions" to do such as going to the library to pick something up for her and how successful he was and how proud she was of him and he was of himself. Which is exactly what I have been thinking lately but I thought for sure they would fight me when I brought it up again at the school conference we have scheduled for March 27th.
I am ecstatic! When I told him I had just talked to his teacher his face began to fall but I quickly told him how proud his teacher was and he just beamed!
What a way to start the Easter Holiday.
I am ecstatic! When I told him I had just talked to his teacher his face began to fall but I quickly told him how proud his teacher was and he just beamed!
What a way to start the Easter Holiday.
Wednesday, March 12, 2008
Coming of Age . . . 40 that is
In our family we go on a roadtrip every March Break (I think our American friends refer to it as Spring Break?). The bad weather led us to rearrange our trip but we were thankful we didn't have to cancel. First we headed to Greenville, Ohio to my beloved Kitchenaid store where we discovered they had held over some wonderful sales until the end of March because of the bad weather. Then off to the Children's Museum of Indianapolis (FABULOUS!) and other site seeing and shopping. Today we headed to Louisville Kentucky. We are on night 4 of a 5 night trip. All is going amazingly well.
Until this morning . . . when I discovered a grey hair sticking up maddeningly out of the top of my head, just like Alfalfa. It's not my first grey hair and it won't be my last but it honestly was like it was taunting me for pete's sake!!!! Then I was playing my husband's Nintendo Ds Brain age game and it tells me I am like someone in my 40's - I'm 34! And then we go to Walmart where I delight that I can buy beer along with my other sundries (in Ontario, Canada where I live you have to go to the "Beer Store" or an LCBO). Low and behold I am walking to our van with my beer and bags only to see on the receipt in LARGE print at the bottom "All customers appearing to be under the age of 40 will be asked to provide proof of age by showing proper ID". Great - so now I don't even look like I am under 40?? I seriously wanted to go back in and show the cashier and say "oops, hon, don't you want to card me?". My husband stopped me, the last thing he wanted was for me to drop to my knees sobbing and begging to be carded.
Until this morning . . . when I discovered a grey hair sticking up maddeningly out of the top of my head, just like Alfalfa. It's not my first grey hair and it won't be my last but it honestly was like it was taunting me for pete's sake!!!! Then I was playing my husband's Nintendo Ds Brain age game and it tells me I am like someone in my 40's - I'm 34! And then we go to Walmart where I delight that I can buy beer along with my other sundries (in Ontario, Canada where I live you have to go to the "Beer Store" or an LCBO). Low and behold I am walking to our van with my beer and bags only to see on the receipt in LARGE print at the bottom "All customers appearing to be under the age of 40 will be asked to provide proof of age by showing proper ID". Great - so now I don't even look like I am under 40?? I seriously wanted to go back in and show the cashier and say "oops, hon, don't you want to card me?". My husband stopped me, the last thing he wanted was for me to drop to my knees sobbing and begging to be carded.
Tuesday, March 11, 2008
Amidst the Madness
I picked C up at school on Wednesday. When I got there he was bouncing in and out of the Principals' office. My heart sank and I admit I wondered if I would be able to get out of the hall without being summoned into her office to "talk for a sec" (translation: your son is in BIG trouble and I want to rip your heart out). I stood there wondering if I will always have that gut reaction where I want the floor to open up and swallow me every time the principal walks toward me?
As they walked toward me though the principal looked, peaceful, not frazzled. C gave no indication of being upset as he darted for the front door and I followed (yes, I did think it would be the perfect excuse to not have a long conversation). She followed us and tentatively said " I wanted you to know c had a rough afternoon. He climbed under a table again and so I climbed in there too". I honestly think all I could muster in response was "oh. . . " and she continued, she told me how they found a way to have a conversation and he shared some things he hadn't shared with anyone other than his father and I. As she was telling me this, both my boys were climbing on snow piles and acting like maniacs. It didn't all register with me until later that night.
The Principal climbed under a table and sat with my son and had a heartfelt conversation about why he is sad.
Amidst the madness of late comes this wonderful moment. In so many ways we are so blessed.
As they walked toward me though the principal looked, peaceful, not frazzled. C gave no indication of being upset as he darted for the front door and I followed (yes, I did think it would be the perfect excuse to not have a long conversation). She followed us and tentatively said " I wanted you to know c had a rough afternoon. He climbed under a table again and so I climbed in there too". I honestly think all I could muster in response was "oh. . . " and she continued, she told me how they found a way to have a conversation and he shared some things he hadn't shared with anyone other than his father and I. As she was telling me this, both my boys were climbing on snow piles and acting like maniacs. It didn't all register with me until later that night.
The Principal climbed under a table and sat with my son and had a heartfelt conversation about why he is sad.
Amidst the madness of late comes this wonderful moment. In so many ways we are so blessed.
Thursday, February 21, 2008
Battening Down the Hatches
I know I have not posted in over a month. My apologies. Honestly it was partly due to our youngest son, J, going in for a tonsillectomy and ending up with some complications. That was a crazy and worrisome time but it all ended well. Gave me some insight, just a little, into what parents with chronically ill children must have to contend with. All my prayers, blessings and encouragement to all of you who do.
Lately though, I am in a funk. Maybe it's partly the weather. Maybe it's that I hate my job. Maybe it's that I just cannot seem to get motivated to do anything - I cannot even get motivated enough to be stressed about getting further and further behind in my paper work at the office. Sigh.
Mostly though I can tell I am laying low and gathering my strength. I should have seen it coming. Obviously my subconscious did and looking back, I can see the signs that I was battening down the hatches without realizing what I was doing. C is spinning out of control again. His compulsions and obsessions are leading the way. we are trying a new medication, who knows if its working or making things worse. This time of year is always difficult for him. We don't really know why but always during lent and usually waning after Easter. Last year he was threatening to kill himself. Actually his words were "Sometimes I think about using a knife, like this, to cut myself". He was making himself a sandwich which was a new thing for him to be doing (it was just a butter knife but still). While I willed myself to stay calm and matter of fact I asked "Oh, why would you want to do that?" and he answered almost as matter of fact "so I could bleed until I had no more blood and then I would go to heaven to live with Jesus and everything would be good there." He was 8 years old and there was no doubt in my mind that he really felt that way. He was struggling and hurting so bad that he thought dying sounded like a better option than living his life the way it was.
I know I haven't gone into too much detail about his diagnosis and his needs in my blog. It seems so exhausting and complicated. I work with exceptional children every day and have for my entire adult life. Honestly I have only met one or two other children who are as complicated as my son. He is in that frustrating place of being super sensitive and bright and yet struggles to make connections in both learning and socialization. People who meet him briefly often think I have exagerated his needs. He can seem so "together" and insightful. Yet he can fall apart at the drop of a hat. Then those same people think I am making excuses for him and his poor behaviour. Apparently I am an enabler. Even my own husband has accused me of that at times.
Those same people should have witnessed the scene yesterday. The frantic text messages from C's worker who cares for him for 2 hours after school on the day I work. "You need to come home - it's bad". She had never sent such a message before. Needless to say, as soon as I saw it I floored it home. As I drove I called her (preach safety to me later) and she filled me in. He would not get in the house. He was running back and forth across the street. She had the phone poised in her hand to call 911 as she was certain he would be hit any moment. I could tell she was scared, he had never shown this side to her before. Few have seen it aside from my dh and I. I got home and you could see from afar that he was completely wound up - when he is like this even his pupils dilate so that his eyes seem like huge black pools. I could not get him in the house. At one point he bolted (Damn that kid is FAST) but I was able to coax him back - it was almost like dealing with a frightened animal. Once back in the house he fell apart, sobbing from the bottom of his heart. Yelling "You don't know what it's like not to have friends". I got him into his room and we cuddled on his bed. I thought he was calming - I was SO wrong. I though he went to sit up, he bolted. He's fast. He got to the front door before I did and without his boots or coat or anything he went running down the street. No way am I going to be able to catch him. I call A and cryptically tell him what's happening as I am getting my shoes and coat on. He offers to come home. I catch up to C at his school just down the street. Luckily a couple of kids were there and I was able to encourage them to come toward me and he followed (again, doesn't that sound more like a frightened animal than a 9 year old boy?). I am trying to gear myself of for a struggle to get him home. As soon as I put my arm around him he melts against me sobbing "My feet hurt, it's really cold, I should wear boots". The rest of the evening was tumultuous but we got through and we were able to keep him safe. I'm kind of shell shocked. What are we supposed to do now and how do we keep him safe?
Lately though, I am in a funk. Maybe it's partly the weather. Maybe it's that I hate my job. Maybe it's that I just cannot seem to get motivated to do anything - I cannot even get motivated enough to be stressed about getting further and further behind in my paper work at the office. Sigh.
Mostly though I can tell I am laying low and gathering my strength. I should have seen it coming. Obviously my subconscious did and looking back, I can see the signs that I was battening down the hatches without realizing what I was doing. C is spinning out of control again. His compulsions and obsessions are leading the way. we are trying a new medication, who knows if its working or making things worse. This time of year is always difficult for him. We don't really know why but always during lent and usually waning after Easter. Last year he was threatening to kill himself. Actually his words were "Sometimes I think about using a knife, like this, to cut myself". He was making himself a sandwich which was a new thing for him to be doing (it was just a butter knife but still). While I willed myself to stay calm and matter of fact I asked "Oh, why would you want to do that?" and he answered almost as matter of fact "so I could bleed until I had no more blood and then I would go to heaven to live with Jesus and everything would be good there." He was 8 years old and there was no doubt in my mind that he really felt that way. He was struggling and hurting so bad that he thought dying sounded like a better option than living his life the way it was.
I know I haven't gone into too much detail about his diagnosis and his needs in my blog. It seems so exhausting and complicated. I work with exceptional children every day and have for my entire adult life. Honestly I have only met one or two other children who are as complicated as my son. He is in that frustrating place of being super sensitive and bright and yet struggles to make connections in both learning and socialization. People who meet him briefly often think I have exagerated his needs. He can seem so "together" and insightful. Yet he can fall apart at the drop of a hat. Then those same people think I am making excuses for him and his poor behaviour. Apparently I am an enabler. Even my own husband has accused me of that at times.
Those same people should have witnessed the scene yesterday. The frantic text messages from C's worker who cares for him for 2 hours after school on the day I work. "You need to come home - it's bad". She had never sent such a message before. Needless to say, as soon as I saw it I floored it home. As I drove I called her (preach safety to me later) and she filled me in. He would not get in the house. He was running back and forth across the street. She had the phone poised in her hand to call 911 as she was certain he would be hit any moment. I could tell she was scared, he had never shown this side to her before. Few have seen it aside from my dh and I. I got home and you could see from afar that he was completely wound up - when he is like this even his pupils dilate so that his eyes seem like huge black pools. I could not get him in the house. At one point he bolted (Damn that kid is FAST) but I was able to coax him back - it was almost like dealing with a frightened animal. Once back in the house he fell apart, sobbing from the bottom of his heart. Yelling "You don't know what it's like not to have friends". I got him into his room and we cuddled on his bed. I thought he was calming - I was SO wrong. I though he went to sit up, he bolted. He's fast. He got to the front door before I did and without his boots or coat or anything he went running down the street. No way am I going to be able to catch him. I call A and cryptically tell him what's happening as I am getting my shoes and coat on. He offers to come home. I catch up to C at his school just down the street. Luckily a couple of kids were there and I was able to encourage them to come toward me and he followed (again, doesn't that sound more like a frightened animal than a 9 year old boy?). I am trying to gear myself of for a struggle to get him home. As soon as I put my arm around him he melts against me sobbing "My feet hurt, it's really cold, I should wear boots". The rest of the evening was tumultuous but we got through and we were able to keep him safe. I'm kind of shell shocked. What are we supposed to do now and how do we keep him safe?
Thursday, January 17, 2008
Child's Play
I tiptoed down the stairs, moving swiftly into the kitchen, out of sight but peeking around the corner to witness this amazing turn of events. Two boys, heads close together, searching through a bin of toys and making a plan.
"I know, you be Darth Vader and I'll be Harry Potter and pretend you are trying to kill me and I put a spell on you" says the older boy.
"Wel-l-l-l okay" says the younger brother as they move quickly to set up their scene. Light sabre versus wand action commenced, Darth Vader was quickly defeated and the boys moved onto a new plan of action.
I waited for it, the sharp exclamation "HEY!" followed by smacking noises, crying and outright rage. It didn't happen. I waited for the "That's not fair - M-O-O-MMMMMMMMM!" and the ensuing mad race to get up the stairs (where they think I am) to get to me first to tell on the other. It didn't happen. Was it possible that they were actually playing? Did I just hear J make a suggestion for their play and C actually said "okay" instead of overriding him, or worse, yet, hauling off and smacking his brother.
Who are these boys and can I keep them?
"I know, you be Darth Vader and I'll be Harry Potter and pretend you are trying to kill me and I put a spell on you" says the older boy.
"Wel-l-l-l okay" says the younger brother as they move quickly to set up their scene. Light sabre versus wand action commenced, Darth Vader was quickly defeated and the boys moved onto a new plan of action.
I waited for it, the sharp exclamation "HEY!" followed by smacking noises, crying and outright rage. It didn't happen. I waited for the "That's not fair - M-O-O-MMMMMMMMM!" and the ensuing mad race to get up the stairs (where they think I am) to get to me first to tell on the other. It didn't happen. Was it possible that they were actually playing? Did I just hear J make a suggestion for their play and C actually said "okay" instead of overriding him, or worse, yet, hauling off and smacking his brother.
Who are these boys and can I keep them?
Thursday, January 10, 2008
It's all about Rear Ends - A week in Review
Last weekend A finally gave in and called a plumber to come Monday. Our ancient toilet had been "rocking" when you sit for quite some time. Living in a house of males, who only have to sit sporadically, meant that my requests to have it taken care of ASAP went unnoticed. When the leak appeared that finally made A leap into action. After many calls from the company to reschedule the appointment time (I knew the original small window of between 10 a.m. and noon was too good to be true) the plumber finally showed up 5 minutes before I needed to leave to go pick C up at school. I had REALLY wanted it taken care of while the boys were at school - anything out of the ordinary, particularly strangers in our home, really throw C for a loop.
Knowing things might not go according to MY plan (do they ever?) I discussed the fate of our old toilet with C the night before and reminded him on the way to school that when he came home we should have a new toilet and the plumbers might still be there. We also had to talk about the fact that we were getting a new toilet. We knew this would be an issue for C. As the years go on he has developed more and more rigidity around toileting and using other people's bathrooms has been an issue the past two years.
The plumber and his assistant were very efficient and helpful. When C first got home from school they kept saying "oh no, he's ok" when I was trying to get him upstairs to watch TV and keep him out of their hair. Funny how after he got into full OCD swing of things they were no longer trying to stop me as I attempted to redirect him. After all the work was complete and the workmen gone home, C kept going in and just looking at the toilet. He held out for as long as he could and then asked for me to help him. Basically he just needed re-assurance that even though the toilet didn't "feel right" it was all going to be ok. That night at bedtime we talked a little about the new toilet and he said "It will be ok mom, cause I know you'll be there to help me". Ah, melt my heart.
Then on Wednesday I uncharacteristically decided to go home on my lunch hour and for my troubles I got rear ended by a lady that proclaimed "Honestly I didn't even see you because I was looking in my rear view mirror!" WTF? Anyhow, though my neck was a little sore the next day there was very minimal damage to the car so I could take a deep breath and be thankful that it wasn't much worse.
So that folks was the highlight of our week
The [REAR] End
Knowing things might not go according to MY plan (do they ever?) I discussed the fate of our old toilet with C the night before and reminded him on the way to school that when he came home we should have a new toilet and the plumbers might still be there. We also had to talk about the fact that we were getting a new toilet. We knew this would be an issue for C. As the years go on he has developed more and more rigidity around toileting and using other people's bathrooms has been an issue the past two years.
The plumber and his assistant were very efficient and helpful. When C first got home from school they kept saying "oh no, he's ok" when I was trying to get him upstairs to watch TV and keep him out of their hair. Funny how after he got into full OCD swing of things they were no longer trying to stop me as I attempted to redirect him. After all the work was complete and the workmen gone home, C kept going in and just looking at the toilet. He held out for as long as he could and then asked for me to help him. Basically he just needed re-assurance that even though the toilet didn't "feel right" it was all going to be ok. That night at bedtime we talked a little about the new toilet and he said "It will be ok mom, cause I know you'll be there to help me". Ah, melt my heart.
Then on Wednesday I uncharacteristically decided to go home on my lunch hour and for my troubles I got rear ended by a lady that proclaimed "Honestly I didn't even see you because I was looking in my rear view mirror!" WTF? Anyhow, though my neck was a little sore the next day there was very minimal damage to the car so I could take a deep breath and be thankful that it wasn't much worse.
So that folks was the highlight of our week
The [REAR] End
Monday, January 07, 2008
The Horror of it All
A few years ago I threw in the towel and stopped taking C to get haircuts. I was tired of all the stress and disastrous results. Looking back I can recognize now that the experience put C into sensory overload and it was doomed before it began. A few months ago C started to express interest in having a hairstyle other than what his Dad could do (which was basically a buzz cut). So we agreed to try going back to the place our family frequents. Before we went I decided that it would be best to explain (briefly) to the stylist about C's Tourette's and to make it clear that while he would do his best, it is not his fault should he need to move. C was fine with this plan. The experience was amazing, the stylist was very patient and C stayed fairly still (well, for HIM it was still - compared to other kids he was probably moving like a live wire).
Fast forward to last week, when C needed another hair cut. We waited for a "good day", meaning very few motor tics and no excess anxiety or worries. Unfortunately, the two stylists that were there last time were off and C did not want to come back another day. The stylist that took our name has cut my hair before (and seems sweet) and the place was empty so I figured all should still work out. C's name was called and he headed for the chair when, BOOM, a different stylist pops out of the back room. I take one look at her and the frown on her face as C goofed around getting into the chair and I wanted to bolt.
Instead, I took a deep breath and say "I just want you to know before you start . . ." as she pauses, water bottle held in mid air " that he has Tourette's which is . . ." and before I can finish she gets this horrified look on her face and she BACKS AWAY from C. Luckily he was still playing his Nintendo DS so didn't notice. I had a split second to decide, be all upset and offended or push through and hope that I could enlighten this woman. So I started again, as though she hadn't done what she did " . . . it's a MOVEMENT disorder". She moved back but still looked bewildered. I took another deep breath and tried to act all nonchalant. "Basically it means that his body moves in ways he cannot control, so while today is a good day he might sometimes move unexpectedly - you need to know this and you need to know that it is not his fault."
Finally the haircut was underway, C did a good job, with a little bit of lecturing to the stylist about not being so rough (it was then that I remembered she had done my hair once and WAS rough about it - ooops). He did a nice job advocating for himself, even I hadn't said anything when she was rough doing my hair. I bit my tongue cause there is still that old fashioned mom in me that wants to chastise my kids if they say anything to anyone that might even be remotely seen as rude. He wasn't being rude, he was being factual. I then focused on being thankful that he hadn't swore at her when he said it (we are battling that issue at home a lot right now).
After the cut the stylist confided in me that she thought when I told her Tourette's that it was some sort of communicable disease like scabies or lice. What she didn't do was apologize, but, whatever. I told her that the horror on her face told me exactly what she was thinking but that I was glad she now understood. Her face went red at that time so I knew it was all sinking in. When it came time to pay I still tipped her extremely well. She had done a nice job on C's hair and I didn't want to act petty and not do what I always do. She was very shocked by the tip and thanked me profusely. I'll admit, I do hope that helped to solidify this new information that she has about TS, and maybe, just maybe the next time she's in a similar situation she won't back away.
Fast forward to last week, when C needed another hair cut. We waited for a "good day", meaning very few motor tics and no excess anxiety or worries. Unfortunately, the two stylists that were there last time were off and C did not want to come back another day. The stylist that took our name has cut my hair before (and seems sweet) and the place was empty so I figured all should still work out. C's name was called and he headed for the chair when, BOOM, a different stylist pops out of the back room. I take one look at her and the frown on her face as C goofed around getting into the chair and I wanted to bolt.
Instead, I took a deep breath and say "I just want you to know before you start . . ." as she pauses, water bottle held in mid air " that he has Tourette's which is . . ." and before I can finish she gets this horrified look on her face and she BACKS AWAY from C. Luckily he was still playing his Nintendo DS so didn't notice. I had a split second to decide, be all upset and offended or push through and hope that I could enlighten this woman. So I started again, as though she hadn't done what she did " . . . it's a MOVEMENT disorder". She moved back but still looked bewildered. I took another deep breath and tried to act all nonchalant. "Basically it means that his body moves in ways he cannot control, so while today is a good day he might sometimes move unexpectedly - you need to know this and you need to know that it is not his fault."
Finally the haircut was underway, C did a good job, with a little bit of lecturing to the stylist about not being so rough (it was then that I remembered she had done my hair once and WAS rough about it - ooops). He did a nice job advocating for himself, even I hadn't said anything when she was rough doing my hair. I bit my tongue cause there is still that old fashioned mom in me that wants to chastise my kids if they say anything to anyone that might even be remotely seen as rude. He wasn't being rude, he was being factual. I then focused on being thankful that he hadn't swore at her when he said it (we are battling that issue at home a lot right now).
After the cut the stylist confided in me that she thought when I told her Tourette's that it was some sort of communicable disease like scabies or lice. What she didn't do was apologize, but, whatever. I told her that the horror on her face told me exactly what she was thinking but that I was glad she now understood. Her face went red at that time so I knew it was all sinking in. When it came time to pay I still tipped her extremely well. She had done a nice job on C's hair and I didn't want to act petty and not do what I always do. She was very shocked by the tip and thanked me profusely. I'll admit, I do hope that helped to solidify this new information that she has about TS, and maybe, just maybe the next time she's in a similar situation she won't back away.
Sunday, January 06, 2008
Baby no More
My baby turned four years old on December 31st. Like that wasn't hard enough,yesterday I gave him a kiss on the cheek and as he walked away I witnessed him WIPING IT OFF! sniff sniff - where did my baby go? I wasn't ready for this.
Thursday, December 27, 2007
Rollercoaster Moments
I logged in a few hours ago and began this post - it started like this:
"I HATE OCD - I hate that it compels C to ruin a day he has been desperate for weeks to have. I don't know how much more of this I can take, the run ins literally make me ill with anxiety"
C had slept in this morning and I ran around trying to get some housework done. I had invited my friends boys over to play today and was hoping to get the upstairs passable so that I could spend time in the basement with all 4 boys to make sure that C didn't have any "episodes". Honestly, things have been progressively getting better with respect to his moods since we took him off the new medication but I wanted to make sure I was on hand just in case.
As soon as the boys showed up at the door, C was in the oldest boys face (lets call him Jake for the sake of this post). In his incessant, pressured speech C began to list his demands "Jake, you need to stand over there. I am going to teach you Karate" and even while Jake politely declined, C headed off to change into his karate gear. It's important to note that C had briefly taken Karate last year through the community centre so he really does not know Karate. He did get Karate Kid for Christmas and watched it yesterday so that probably was where this obsession was coming from. He kept badgering Jake even with me running interference and eventually I sent Jake upstairs to play as I was beginning to fear for his safety as C escalated. I admit it, I felt frustrated and desperate. In moments like this he is soooooo fixated. In my heart I know the only way to ease the situation is to go around it, not try to tackle it head on. But I have moments of self-doubt at times and sometimes I am tired. After a few attempts to discuss it calmly (there was no calmness going on), I went straight for distraction and suggested Playstation. it was eery how quickly he refocused.
And within an hour I am feeling more like this:
"my son is amazing. He is so patient as he teaches our 4 year old friend how to play Lego Star Wars on the PS2. He even turned on the invincibility feature and pauses mid lightsabre wielding to coach him on what buttons to push.He has come a long way"
Will I ever get used to the roller coaster moments?
"I HATE OCD - I hate that it compels C to ruin a day he has been desperate for weeks to have. I don't know how much more of this I can take, the run ins literally make me ill with anxiety"
C had slept in this morning and I ran around trying to get some housework done. I had invited my friends boys over to play today and was hoping to get the upstairs passable so that I could spend time in the basement with all 4 boys to make sure that C didn't have any "episodes". Honestly, things have been progressively getting better with respect to his moods since we took him off the new medication but I wanted to make sure I was on hand just in case.
As soon as the boys showed up at the door, C was in the oldest boys face (lets call him Jake for the sake of this post). In his incessant, pressured speech C began to list his demands "Jake, you need to stand over there. I am going to teach you Karate" and even while Jake politely declined, C headed off to change into his karate gear. It's important to note that C had briefly taken Karate last year through the community centre so he really does not know Karate. He did get Karate Kid for Christmas and watched it yesterday so that probably was where this obsession was coming from. He kept badgering Jake even with me running interference and eventually I sent Jake upstairs to play as I was beginning to fear for his safety as C escalated. I admit it, I felt frustrated and desperate. In moments like this he is soooooo fixated. In my heart I know the only way to ease the situation is to go around it, not try to tackle it head on. But I have moments of self-doubt at times and sometimes I am tired. After a few attempts to discuss it calmly (there was no calmness going on), I went straight for distraction and suggested Playstation. it was eery how quickly he refocused.
And within an hour I am feeling more like this:
"my son is amazing. He is so patient as he teaches our 4 year old friend how to play Lego Star Wars on the PS2. He even turned on the invincibility feature and pauses mid lightsabre wielding to coach him on what buttons to push.He has come a long way"
Will I ever get used to the roller coaster moments?
Tuesday, December 25, 2007
Merry Christmas
Merry Christmas to all! We've had a great time in our house the last few days. No guests, no commitments, just lots of family time. Oh, and a trip to the ER on Christmas Eve for J, who fractured his wrist in a seemingly innocuous fall (for him that is). I try to see the silver lining in these things, which came in the form of free parking at the hospital. A few weeks ago we had to go there for J's hearing test and it took us 45 minutes to find a parking spot and then had to pay close to $10.00 when we came out. So all in all it was a good night for it to happen. I don't think it will be the last ER trip for J, in fact I'm kind of surprised that we haven't had more considering his high energy.
From our family to yours - happy holidays
Wednesday, December 05, 2007
Time to slow things down
On Tuesday my darling C was forgotten at school at the end of the day and it was completely my fault. Not sure how many times our in home worker would have needed to remind me that she could not pick him up this week - obviously more than she did. He was fine, luckily it was a day that they have homework club and some teachers stay later. He was fine, I wasn't. If the school secretary hadn't persistently called (because of course it was the ONE time I had forgot to take my cell phone into our weekly team meeting) I wouldn't have realized he wasn't where he was supposed to be. As I raced to the school I tried to keep it in perspective, telling myself "these things happen". But, you know what, they shouldn't. I think we all have our limits and expectations in life. I expect that no child of mine will reach the end of their long school day only to find out that they have been forgotten. So while I am not beating myself up over it I did decide as I walked into the school that something has got to give, I CANNOT and WILL not keep up this pace and live like this.
Other mom's may be okay with running around like a chicken with their head cut off. Really not an image I am trying to emulate. I don't want my kids to only experience frazzled and stressed mom. Then my wonderful husband came home that night, without even knowing just how crazy my day had been and proclaimed "I was thinking today that maybe you should go ahead and quit your job". I've been talking about it off and on for a very long time. I do love my job but I work in early intervention and it is a very emotionally exhausting job. It was fine before kids, before the depth of what C needed had really sunk in. I even reduced from full time to part time upon return to work from adopting J. All that seemed to do was make me try to fit 5 days work into 3, it never works out.
So my husband is even giving my plan his first bought of blessings and then I balk. Do I really need to QUIT? I will lose the benefits and the pay. Can we really do without it? What if I quit and regret it later? I begin to think maybe what I need is to ask for a leave of absence, protect my job but give myself some time to try to get my house and life a little more in order. Great idea. Only thing is, to ask for one I would have to be caught up on all my paperwork - that might take a while because I can't catch up because I have too much on my plate.
The morning after forgetting C, I walked the boys to school through the 2 inches of snow we had received. The boys were so excited by the snow and I tried to keep myself in the moment but really I was stressed because I was running late and really needed to get started on paperwork. After dropping them off I headed home, put the keys in the car to start it while I cleaned it off. Then I went to jump back in to the toasty warm car only to find that I had locked myself out. Luckily I had my cell phone in my pocket. I called A to come rescue me and then I called my boss. I laughed as I told her what I had done. She answered "you are really not having a good week, are you? But at least you can laugh about it". Well, I either laugh or I cry. So while I stood in my driveway, watching snow melt off my car, I laughed and laughed until I cried. Don't even want to know what the building full of senior citizens across the street thought of my antics.
Other mom's may be okay with running around like a chicken with their head cut off. Really not an image I am trying to emulate. I don't want my kids to only experience frazzled and stressed mom. Then my wonderful husband came home that night, without even knowing just how crazy my day had been and proclaimed "I was thinking today that maybe you should go ahead and quit your job". I've been talking about it off and on for a very long time. I do love my job but I work in early intervention and it is a very emotionally exhausting job. It was fine before kids, before the depth of what C needed had really sunk in. I even reduced from full time to part time upon return to work from adopting J. All that seemed to do was make me try to fit 5 days work into 3, it never works out.
So my husband is even giving my plan his first bought of blessings and then I balk. Do I really need to QUIT? I will lose the benefits and the pay. Can we really do without it? What if I quit and regret it later? I begin to think maybe what I need is to ask for a leave of absence, protect my job but give myself some time to try to get my house and life a little more in order. Great idea. Only thing is, to ask for one I would have to be caught up on all my paperwork - that might take a while because I can't catch up because I have too much on my plate.
The morning after forgetting C, I walked the boys to school through the 2 inches of snow we had received. The boys were so excited by the snow and I tried to keep myself in the moment but really I was stressed because I was running late and really needed to get started on paperwork. After dropping them off I headed home, put the keys in the car to start it while I cleaned it off. Then I went to jump back in to the toasty warm car only to find that I had locked myself out. Luckily I had my cell phone in my pocket. I called A to come rescue me and then I called my boss. I laughed as I told her what I had done. She answered "you are really not having a good week, are you? But at least you can laugh about it". Well, I either laugh or I cry. So while I stood in my driveway, watching snow melt off my car, I laughed and laughed until I cried. Don't even want to know what the building full of senior citizens across the street thought of my antics.
Wednesday, November 28, 2007
Progress
I am happy to report that C is back in school. His removal only lasted one day. I anticipated a huge knock down drag out fight with the school. Instead I received an email shortly after I sent mine to the Principal, stating that a plan is in place (sounds like a good plan at that) but of course no acknowledgment of wrong doing or attempt to mend bridges. I guess that will be down to me.
C seems much happier the last couple of days - gee, I wonder why? He got punched in the face yesterday by another child and didn't retaliate. When I asked him about it he told me "Look Mom, the kid was having a bad day. He apologized, I accepted his apology, we left it at school. Case closed". So there! Boy has he come a long way. I think the EA was more upset about the punch than anyone else.
We are really seeing C growing leaps and bounds with regards to planning and problem solving. Case in point, on the weekend he was bored and wanting to call people. He knows we would limit who he was calling so as soon as our backs were turned he got hold of the phone and called a bunch of people, including his therapeutic riding. When A drove C to riding this morning the staff were, for some reason, all surprised to see C. Turns out he called them and left a very composed and professional message that he would not be coming this week. A was stunned (as was I when I heard) and C was upset because I don't think he had thought his plan through. Turns out he wanted me to take him instead of his dad (we alternate weeks) and somehow thought canceling today would achieve his goal. Natural consequences are a good thing, he couldn't ride or work in the barn because they weren't expecting him. Somehow I don't think he'll try that one again.
So, while his logic was faulty it does seem he tried to apply some. And that's a big step.
C seems much happier the last couple of days - gee, I wonder why? He got punched in the face yesterday by another child and didn't retaliate. When I asked him about it he told me "Look Mom, the kid was having a bad day. He apologized, I accepted his apology, we left it at school. Case closed". So there! Boy has he come a long way. I think the EA was more upset about the punch than anyone else.
We are really seeing C growing leaps and bounds with regards to planning and problem solving. Case in point, on the weekend he was bored and wanting to call people. He knows we would limit who he was calling so as soon as our backs were turned he got hold of the phone and called a bunch of people, including his therapeutic riding. When A drove C to riding this morning the staff were, for some reason, all surprised to see C. Turns out he called them and left a very composed and professional message that he would not be coming this week. A was stunned (as was I when I heard) and C was upset because I don't think he had thought his plan through. Turns out he wanted me to take him instead of his dad (we alternate weeks) and somehow thought canceling today would achieve his goal. Natural consequences are a good thing, he couldn't ride or work in the barn because they weren't expecting him. Somehow I don't think he'll try that one again.
So, while his logic was faulty it does seem he tried to apply some. And that's a big step.
Tuesday, November 27, 2007
Give him his dignity!!!!
I admit it people, I lost it. I saw red when dealing with the school yesterday and I told the principal to call C's class and have them get him ready - I walked out the front door with an estatic 9 year old boy with a forced smile on my face. I really wasn't sure what I was doing, I just knew that I could not leave my son in a place that would do such a thing to him. I'm posting the letter I wrote right afterwards to the school so you can better understand (names and identifying info have been removed). For any American friends reading this, please bare in mind that our processes (read: lack of laws) make education very different than it is in your neck of the woods.
Dear PRINCIPAL
I am writing to follow up on the conversation that occurred this morning in your office with regard to my son C and the washroom. On November 13, 2007 I received a voicemail message from Ms. Blank where she simply left her name and asked me to call her. She and I were able to speak on the phone the following day where she abruptly informed me that "C will be using the Senior Kindergarten washroom from now on". I was shocked and explained that C has long standing washroom issues and that his using the private washroom was agreed upon by his team at school when I brought him in at the end of August. I explained that perhaps Ms. BLANK wasn't aware of all this and her response was that the "handicap" (her word, not mine) bathroom is "not for kids like C" and that is why he is no longer allowed to use that washroom. C had shared with me the evening before that he had "peed all over" the toilet and received a detention for it. I asked Ms. C if this was the reason for the change and she indicated this was part of it but that there were ongoing issues (which she didn't expand on or explain) and that his using the SK bathroom would allow the EA to "have more control". I told her, very clearly, that we were not in favour of this plan and that we did not want him using the SK bathroom.
Last week I mentioned to you PRINCIPAL that I wanted to set up a meeting with you to discuss Ms.BLANK's phone call and the bathroom issue. At that time I indicated that I was not in a rush for the meeting as I had no reason to believe that, contrary to our wishes, C was using the SK bathroom. However, I did want to follow up with you with regard to my concerns for the tone of the conversation and the inappropriateness of someone not of C's team calling me and changing plans that had been carefully devised with his unique needs in mind. I intended in that meeting to discuss these issues to in order to avoid future incidents. Following my conversation with you in the hall, however, C made a comment at home about having to use the "baby bathroom" at school and this led me to discover that he had, in fact, been made to use the SK bathroom. I attempted to call the school to speak with Mrs. M (who is his LSST and seemed the appropriate person to discuss this with) on Thursday and Friday of last week, however, she was away. This is why the discussion occurred today.
Forcing our nine year old son to use a washroom that is designed for four and five year olds and housed within the Kindergarten room is inappropriate and degrading. When I explained to you this morning that C views this move to the Senior Kindergarten bathroom as a
punishment you agreed and said "well, yes it is - he peed all over ______ (CHILD's NAME REMOVED OUT OF RESPECT FOR HER PRIVACY) velcro straps that are used for her toileting". I admit I was astonished that you would agree with the wording of PUNISHMENT and that you could not understand why I felt so strongly that C not be forced to use a toilet that is too small and is inappropriate. Punishing a child for actions directly related to his disability is in direct violation of his human rights. C himself has shared with us that he does not like to go to that bathroom as it is "for babies" and with his OCD issues around toileting this is having a detrimental effect on him. Forcing him to use the SK bathroom is a violation of his rights and an assault on his dignity and we cannot stand by and allow his self esteem to be so blatantly eroded. I removed him from school today as we cannot and will not stand by while he is actively punished for his disability.
As you are aware, we have been asking for a written toileting plan for several years now as concerns with C in the bathroom are long standing. All I wanted today was assurance for you that C would not be using the SK bathroom. I understand that a longer term plan will take some time and I am confident that you will include us, his parents, as part of that planning. This is why C and I came to the school on August 30, 2007 to try to problem solve what might be an appropriate bathroom for him to use that accommodates his unique toileting needs stemming from his TS, OCD, ADHD and learning disabilities.
It does seem that there has been break down in communication between Mrs. BLANK and members of C's current school team. I understand that my insisting that C NOT use the SK bathrooms, effective immediately, was a surprise to you. This is unfortunate as I believe I was very clear with Mrs. BLANK during my conversation with her on November 14, 2007 that we were NOT in agreement with this plan and did not want this to occur.
We are confident that this matter will be addressed in a timely fashion so that C may return to school a fully integrated and accommodated 4th grader with his dignity and self worth intact.
Dear PRINCIPAL
I am writing to follow up on the conversation that occurred this morning in your office with regard to my son C and the washroom. On November 13, 2007 I received a voicemail message from Ms. Blank where she simply left her name and asked me to call her. She and I were able to speak on the phone the following day where she abruptly informed me that "C will be using the Senior Kindergarten washroom from now on". I was shocked and explained that C has long standing washroom issues and that his using the private washroom was agreed upon by his team at school when I brought him in at the end of August. I explained that perhaps Ms. BLANK wasn't aware of all this and her response was that the "handicap" (her word, not mine) bathroom is "not for kids like C" and that is why he is no longer allowed to use that washroom. C had shared with me the evening before that he had "peed all over" the toilet and received a detention for it. I asked Ms. C if this was the reason for the change and she indicated this was part of it but that there were ongoing issues (which she didn't expand on or explain) and that his using the SK bathroom would allow the EA to "have more control". I told her, very clearly, that we were not in favour of this plan and that we did not want him using the SK bathroom.
Last week I mentioned to you PRINCIPAL that I wanted to set up a meeting with you to discuss Ms.BLANK's phone call and the bathroom issue. At that time I indicated that I was not in a rush for the meeting as I had no reason to believe that, contrary to our wishes, C was using the SK bathroom. However, I did want to follow up with you with regard to my concerns for the tone of the conversation and the inappropriateness of someone not of C's team calling me and changing plans that had been carefully devised with his unique needs in mind. I intended in that meeting to discuss these issues to in order to avoid future incidents. Following my conversation with you in the hall, however, C made a comment at home about having to use the "baby bathroom" at school and this led me to discover that he had, in fact, been made to use the SK bathroom. I attempted to call the school to speak with Mrs. M (who is his LSST and seemed the appropriate person to discuss this with) on Thursday and Friday of last week, however, she was away. This is why the discussion occurred today.
Forcing our nine year old son to use a washroom that is designed for four and five year olds and housed within the Kindergarten room is inappropriate and degrading. When I explained to you this morning that C views this move to the Senior Kindergarten bathroom as a
punishment you agreed and said "well, yes it is - he peed all over ______ (CHILD's NAME REMOVED OUT OF RESPECT FOR HER PRIVACY) velcro straps that are used for her toileting". I admit I was astonished that you would agree with the wording of PUNISHMENT and that you could not understand why I felt so strongly that C not be forced to use a toilet that is too small and is inappropriate. Punishing a child for actions directly related to his disability is in direct violation of his human rights. C himself has shared with us that he does not like to go to that bathroom as it is "for babies" and with his OCD issues around toileting this is having a detrimental effect on him. Forcing him to use the SK bathroom is a violation of his rights and an assault on his dignity and we cannot stand by and allow his self esteem to be so blatantly eroded. I removed him from school today as we cannot and will not stand by while he is actively punished for his disability.
As you are aware, we have been asking for a written toileting plan for several years now as concerns with C in the bathroom are long standing. All I wanted today was assurance for you that C would not be using the SK bathroom. I understand that a longer term plan will take some time and I am confident that you will include us, his parents, as part of that planning. This is why C and I came to the school on August 30, 2007 to try to problem solve what might be an appropriate bathroom for him to use that accommodates his unique toileting needs stemming from his TS, OCD, ADHD and learning disabilities.
It does seem that there has been break down in communication between Mrs. BLANK and members of C's current school team. I understand that my insisting that C NOT use the SK bathrooms, effective immediately, was a surprise to you. This is unfortunate as I believe I was very clear with Mrs. BLANK during my conversation with her on November 14, 2007 that we were NOT in agreement with this plan and did not want this to occur.
We are confident that this matter will be addressed in a timely fashion so that C may return to school a fully integrated and accommodated 4th grader with his dignity and self worth intact.
Sunday, November 25, 2007
The Alphabet Soup of Diagnosis
I think we have reached an impasse. I am really struggling with what to do. On the one hand I refuse to be beholden to diagnosis, I don't want my child prejudged or held down by man made labels. I try to tell myself that the letters that exist after his name are already enough for a 9 year old, do I really want to add more? For what purpose? As it is we had a school meeting a few weeks ago and the Special Education coordinator was new and I spent five minutes just listing the various diagnosis and "issues" - all the while trying to start with my sons strengths and being respectful of all his wonderful qualities rather than making him sound like a walking DSM-IV
So here is the situation - when C had neuropsychological testing a couple years ago it showed that he had "multiple learning disabilities". Actually, it really said "what best could be described as multiple learning disabilities" or something to that effect. I won't rehash the whole experience but lets just say we have never really understood what that meant. We were not given specifics about which specific learning disabilities he has. Fast forward to Grade 4 and I am being told that he is reading at grade level and his Math is just slightly behind (not sure that I agree with the math but he is making steady progress). His writing is behind but considering his "below first percentile" in the Occupational Therapy testing and that he just got his computer this past September, he's doing well. I knew at the time the testing was completed that no one had a crystal ball and he was so young that we had to interpret the results with caution (even if the administering Psychologist didn't).
Everyone agrees that C has made huge academic progress and we are all delighted. Why then can I not just sit back a relax. Other parents grappling with the same issues will understand. I cannot sit back because there is soooooo much more to be done. C is still not allowed to eat lunch with his class. He "sometimes" gets recess and truthfully, he has no real friends. More and more he is struggling to understand social interactions. He just doesn't interact the way that "typical" kids do. He talks to people assuming that they already know what he is talking about, he dominates conversations or juss walks away when people are talking to him. He is enamored by a classmate and has made her feel extremely uncomfortable by trying to give her presents, staring at her and yelling "I love you" across the playground. He comes across as selfish and self centered and I know this is not true. The relationship between he and my husband is more strained than ever. Today he (C, not my husband) had a meltdown in the middle of Walmart, complete with punching me in the back and rolling around on the floor. Who is this child and why is it that this doesn't seem like just LD's or the OCD, or the ADHD or blah blah blah. Something else is going on and I am really thinking that we need to know.
So here is the situation - when C had neuropsychological testing a couple years ago it showed that he had "multiple learning disabilities". Actually, it really said "what best could be described as multiple learning disabilities" or something to that effect. I won't rehash the whole experience but lets just say we have never really understood what that meant. We were not given specifics about which specific learning disabilities he has. Fast forward to Grade 4 and I am being told that he is reading at grade level and his Math is just slightly behind (not sure that I agree with the math but he is making steady progress). His writing is behind but considering his "below first percentile" in the Occupational Therapy testing and that he just got his computer this past September, he's doing well. I knew at the time the testing was completed that no one had a crystal ball and he was so young that we had to interpret the results with caution (even if the administering Psychologist didn't).
Everyone agrees that C has made huge academic progress and we are all delighted. Why then can I not just sit back a relax. Other parents grappling with the same issues will understand. I cannot sit back because there is soooooo much more to be done. C is still not allowed to eat lunch with his class. He "sometimes" gets recess and truthfully, he has no real friends. More and more he is struggling to understand social interactions. He just doesn't interact the way that "typical" kids do. He talks to people assuming that they already know what he is talking about, he dominates conversations or juss walks away when people are talking to him. He is enamored by a classmate and has made her feel extremely uncomfortable by trying to give her presents, staring at her and yelling "I love you" across the playground. He comes across as selfish and self centered and I know this is not true. The relationship between he and my husband is more strained than ever. Today he (C, not my husband) had a meltdown in the middle of Walmart, complete with punching me in the back and rolling around on the floor. Who is this child and why is it that this doesn't seem like just LD's or the OCD, or the ADHD or blah blah blah. Something else is going on and I am really thinking that we need to know.
Tuesday, November 06, 2007
"Just call me Detective"
C tends to take things and hide them. He does this for any number of reasons - his OCD, attachment issues, need for control, a combination of them all. We've tried many things and really it's not an issue if he wants to eat food, why then does he have to take it, take one bite out of it and then hide it? He's not overly sophisticated at the hiding thing either. It might take him months of getting "caught" in one hiding spot before he moves onto a new one. Honestly we just don't put much energy into looking anymore, although we probably should. It's usually A that finds the "stash" (can you tell he's the cleaner one in this household?) and it drives him crazy.
Well, the last few days J is finally earning his stars as an annoying little brother. He's obviously been watching his older bro and has now started to tell on him and give away his secrets. Hmmm. Never occurred to me to ask the little guy. Today J is still home sick and after lunch he asked for some candy (I know, but it's a throat infection, not the flu) but I couldn't find the bowl. I started looking all over and finally threw my hands up and said "sorry, I can't find it". He jumped out of his seat and yelled, "I know where it is" and raced into the basement. A moment later he called for me and I went down to help him extricate the bowl from the hiding spot C had found for it. Since then he has also brought me a video game and a pop tart (1 bite taken) from a hiding spot in their shared room. When I thanked J for his help, his response with his hands on his hips and a wide stance, "Just call me detective!"
Well, the last few days J is finally earning his stars as an annoying little brother. He's obviously been watching his older bro and has now started to tell on him and give away his secrets. Hmmm. Never occurred to me to ask the little guy. Today J is still home sick and after lunch he asked for some candy (I know, but it's a throat infection, not the flu) but I couldn't find the bowl. I started looking all over and finally threw my hands up and said "sorry, I can't find it". He jumped out of his seat and yelled, "I know where it is" and raced into the basement. A moment later he called for me and I went down to help him extricate the bowl from the hiding spot C had found for it. Since then he has also brought me a video game and a pop tart (1 bite taken) from a hiding spot in their shared room. When I thanked J for his help, his response with his hands on his hips and a wide stance, "Just call me detective!"
Monday, November 05, 2007
Just a little respect
Lately A and I have been discussing how to give C more freedom and responsibility while keeping him safe and not setting him up for failure. He basically has supervision the entire time he is awake. We live 100 metres from the school yet I walk him to and from everyday and when at school he is with an adult at all times. The first few years of school C went into the yard before school with all the other kids and came out with them at the end of the day. To my knowledge he ate his lunch with his class in Grade 1 and had recess. Not sure exactly how it came about but now in Grade 4 we are fighting to have him out at recess and to eat lunch with his class. He goes straight with an EA in the morning to the "games room" before school. This situation has bothered me for quite some time as I believe in TRUE inclusion and this just flies in the face of it. We've been working on it, trying to get things changed and slowly they are. We have a big meeting about it in 2 weeks.
A few days ago J was refusing to get his coat and shoes on for school so I sent C on ahead, watching him from the sidewalk and he did fine. He was so nervous and kept looking back over his shoulders but I could tell he was proud at the same time. When I told dh that night he thought that was great and added that when he drops C off at school after therapeutic riding he just lets him out of the car - I've always gone in with him.
Fast forward to today - J is sick again which sends everything topsy turvy. This afternoon I decided rather than bundling J up and exposing everyone to his germs, that I would call the school and ask that C be sent home with me watching from the sidewalk. Our school secretary was not there today and when I explained to the replacement there was a long pause and she says "well, would he be in a class right now or with an EA"? I was taken aback by the question, it's 2:00 in the afternoon for pete's sake so I answered "well - he better be in class!". In my head I'm thinking "oh yeah, we believe in integration, so much so that it's not unusual for kids with EA's to be out of class for no reason". So she says "Let me go ask, can you hold?" . I'm standing there thinking - what do you mean you are going to go ask????? What, just because there is an EA he suddenly wouldn't be capable of doing this? I mean - I AM the mom, right? I found myself wondering what I would say if she came back and said "no". She came back and said "She said that's fine" and as I hung up I found that my heart was really hurting - since when do other people get to dictate what's ok for my child and to not even think twice about it? How is this respectful of who HE is??? What child at the age of 9 wants to be constantly guarded and never let out of an adults sight? One of the things everyone keeps talking to me about is getting C to take more responsibility for day to day things. Don't we then need to respect him and give him just a little bit of freedom then???
A few days ago J was refusing to get his coat and shoes on for school so I sent C on ahead, watching him from the sidewalk and he did fine. He was so nervous and kept looking back over his shoulders but I could tell he was proud at the same time. When I told dh that night he thought that was great and added that when he drops C off at school after therapeutic riding he just lets him out of the car - I've always gone in with him.
Fast forward to today - J is sick again which sends everything topsy turvy. This afternoon I decided rather than bundling J up and exposing everyone to his germs, that I would call the school and ask that C be sent home with me watching from the sidewalk. Our school secretary was not there today and when I explained to the replacement there was a long pause and she says "well, would he be in a class right now or with an EA"? I was taken aback by the question, it's 2:00 in the afternoon for pete's sake so I answered "well - he better be in class!". In my head I'm thinking "oh yeah, we believe in integration, so much so that it's not unusual for kids with EA's to be out of class for no reason". So she says "Let me go ask, can you hold?" . I'm standing there thinking - what do you mean you are going to go ask????? What, just because there is an EA he suddenly wouldn't be capable of doing this? I mean - I AM the mom, right? I found myself wondering what I would say if she came back and said "no". She came back and said "She said that's fine" and as I hung up I found that my heart was really hurting - since when do other people get to dictate what's ok for my child and to not even think twice about it? How is this respectful of who HE is??? What child at the age of 9 wants to be constantly guarded and never let out of an adults sight? One of the things everyone keeps talking to me about is getting C to take more responsibility for day to day things. Don't we then need to respect him and give him just a little bit of freedom then???
Monday, October 29, 2007
Happy Halloween
Sunday, October 28, 2007
Playground Tales
I'm mad, I'm sad, I'm despondent, I'm confused.
Took C & J to their favourite park today to burn off some energy. While J ran around like a maniac in his fireman rain boots, C headed off to try to make friends to play with. He zeroed in on 2 boys that were likely brothers, approximately 6 and 8. He pursued them relentlessly. I could tell the older boy didn't feel comfortable and didn't want to play at first. C persevered and the younger one began chasing him. Eventually the older brother joined in. There was C., his motor tics going like crazy (he has one right now where he puts his head off to the side and almost touches his ear to his should while he contorts the rest of his body). Difficulty was, C really didn't clarify what game they were playing or how to play and he was much faster than the other 2 boys. And I'll be honest, he does look a little "weird" with all his motor tics. The boys eventually gave up and went off on their own again. I tried to distract C, to no avail.
He pursued the boys again and I overheard a girl (possibly the boys sister) tell them to "just don't talk to him". I couldn't help it - I said in a loud voice right to her "oh, that's real nice -he just wants to play". Meanwhile, C had cornered the boys and called for me, when I went over he said "I need your help Mom, I just want to play with them". the boys really did look like dear caught in headlights. So I focused on C and said, "I think you are confusing them. They don't know who you are and you keep telling them what to do. You are still a stranger to them." I could see the older boy nodding his head out of the corner of my eye. C turned and put out his hand "Hi, I am C pleased to meet you". The older boy wouldn't take his hand (I don't blame him - what 9 yr old shakes hands??????) and C just stood there and said "You're supposed to shake my hand and tell me your name". The younger boy shook C's hand and offered his name, to which his brother shot a dark angry look at him for. For a few minutes the boys played together again, everything seemed fine and I stayed close by. The older girl promptly went to her father and was whispering and pointing at C and suddenly they were leaving.
As they walked away C (who didn't understand what was happening) tried to follow them and was resistant when I tried to get him to come back. He really thought I was the one stopping him from playing with his new friends. He started to have a meltdown and I almost lost it, I was so frustrated by the whole series of events. I didn't know whether to cry or to scream so instead I said in a loud voice - "I know you want to play and I know you didn't do anything wrong. I guess that girl and her dad just don't know you and don't understand your Tourettes. Maybe one day someone will teach them how to be nice".
I'm not saying it was a great thing to do. It did stop C in his tracks, he suddenly stopped fighting me and said "It's just not fair" and as we walked behind the family trying to high tail it out of there I put my arm around his shoulder (which he didn't shrug off right away for once) and said "I know. You were trying but some people just don't understand".
Took C & J to their favourite park today to burn off some energy. While J ran around like a maniac in his fireman rain boots, C headed off to try to make friends to play with. He zeroed in on 2 boys that were likely brothers, approximately 6 and 8. He pursued them relentlessly. I could tell the older boy didn't feel comfortable and didn't want to play at first. C persevered and the younger one began chasing him. Eventually the older brother joined in. There was C., his motor tics going like crazy (he has one right now where he puts his head off to the side and almost touches his ear to his should while he contorts the rest of his body). Difficulty was, C really didn't clarify what game they were playing or how to play and he was much faster than the other 2 boys. And I'll be honest, he does look a little "weird" with all his motor tics. The boys eventually gave up and went off on their own again. I tried to distract C, to no avail.
He pursued the boys again and I overheard a girl (possibly the boys sister) tell them to "just don't talk to him". I couldn't help it - I said in a loud voice right to her "oh, that's real nice -he just wants to play". Meanwhile, C had cornered the boys and called for me, when I went over he said "I need your help Mom, I just want to play with them". the boys really did look like dear caught in headlights. So I focused on C and said, "I think you are confusing them. They don't know who you are and you keep telling them what to do. You are still a stranger to them." I could see the older boy nodding his head out of the corner of my eye. C turned and put out his hand "Hi, I am C pleased to meet you". The older boy wouldn't take his hand (I don't blame him - what 9 yr old shakes hands??????) and C just stood there and said "You're supposed to shake my hand and tell me your name". The younger boy shook C's hand and offered his name, to which his brother shot a dark angry look at him for. For a few minutes the boys played together again, everything seemed fine and I stayed close by. The older girl promptly went to her father and was whispering and pointing at C and suddenly they were leaving.
As they walked away C (who didn't understand what was happening) tried to follow them and was resistant when I tried to get him to come back. He really thought I was the one stopping him from playing with his new friends. He started to have a meltdown and I almost lost it, I was so frustrated by the whole series of events. I didn't know whether to cry or to scream so instead I said in a loud voice - "I know you want to play and I know you didn't do anything wrong. I guess that girl and her dad just don't know you and don't understand your Tourettes. Maybe one day someone will teach them how to be nice".
I'm not saying it was a great thing to do. It did stop C in his tracks, he suddenly stopped fighting me and said "It's just not fair" and as we walked behind the family trying to high tail it out of there I put my arm around his shoulder (which he didn't shrug off right away for once) and said "I know. You were trying but some people just don't understand".
Friday, October 26, 2007
Just this once
C called me at work today, all bent out of shape because apparently his father had told him he couldn't watch J play video games with him (I'm sure there was more to the story - like he was irritating them and had been forewarned). C was adamant that I talk to his father to "tell him he's wrong". Oh boy, I'm sure that would go over just great. I told C that I was sorry but that I'm not the boss of his dad. His response, "can't you just take my side just this once?". It was a good attempt, and part of me wanted to cave but my answer had to be "no, C, you'll have to work it out with dad. Mom's and Dad's have to be on the same side". There was a pause and then "Oh, so is it like a law?" - Yes, C, it's a law :-)
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