Someone in our support group had mentioned that the greatest disability our children had was: they didn’t “look handicapped”. With some disabilities it is visible and with others once a child moves or behaves a certain way it becomes visible. In a lot of cases, with my child, it’s not always apparent that he has a disability until you talk to him or if you watch him for an extended period of time. The other person will get this “funny feeling” that something is just not right.
I either leave to avoid embarrassment or try to explain why they are experiencing this strange sensation. A lot of times there is no quick explanation. I suppose this happens with other disabilities but sometimes there is a handy quick label to supply for an explanation. That just isn’t so with this type of disability.
It actually doesn’t matter what the disability is. Because whether or not it is visible or there is an explanation I am brought back full circle to the idea of who really is the disabled person here.
My child is usually not aware that he is receiving this type of reaction and quite often he doesn’t really care. So who is the disabled person? Why, me, of course! I am the one who feels compelled to explain why my child is acting the way he is. I am the one who feel compelled to leave because either I have to give the long version of his disability or give the short one and most definitely risk misunderstanding. That’s a whole other story.
In the first case I am disabled by my ability to succinctly explain what is different. I am disabled by the fact I feel compelled to explain my child’s behavior. My mind races for a simple way. I try to gauge how understanding this person is and how much I can tell them so they understand but don’t jump to conclusions.
If I run away I am disabled by my compulsion to hide my child, to protect him. I am afraid of their judgment and opinions, which really won’t make a hoot of difference to my child.
In truth, I am under no obligation to do either of these things but because I am disabled I feel driven to do this. But I have a lot of experience with both of these situations. I have a lot of experience with people who stare, glare at my inability to “control” my child so he meets their standards of how a child his age should act and talk. I have a lot of experience using different speeches to explain why he does what he does. Not many of them have been successful.
But that was awhile ago. I’m not cured of this disability but I’ve learned a new way to handle these situations and I learned from the best. I choose not to be too concerned by what my child is saying or doing. I choose to focus on the moment and deal with what I find inappropriate behavior, actions or verbal outbursts. If nothing too bad is happening I often will look at people’s reactions but quietly I say to myself, “It’s not me or my son who has the disability here. They do. And the sad thing is they don’t even know it.”
Showing posts with label strategy. Show all posts
Showing posts with label strategy. Show all posts
Sunday, August 3, 2008
The Michael Jackson of Socks
I was washing my son’s clothes the other day when I came across what he had done to his socks. He’s in his 20’s now but sensory integration – how things feel when they touch his body in any way – has always been a part of his disability. He had neatly cut off all the corners of the toes.
“Honestly!” I sometimes wondered, “Does he not think I would notice this!?”
As I was chiding myself for not consulting him when I bought them, a smile crept onto my face.
An amusing memory, or a Magic Chuckle (see story about what a Magic Chuckle is) that showcased this very issue, popped into my head. At the time I did not know this was even called a “sensory integration issue”. I was just annoyed at how often I had to redress my child every single day.
Remember how Michael Jackson used to go around just wearing one glove? That is how my son got nominated for “The Michael Jackson of Socks”.
Moms of the world can attest to the energy and time that goes into dressing a child. In my case multiply this by five. Sometimes I hated to even bother. In fact if we weren’t going anywhere I wouldn’t and if we were….well you can bet I did it 15 minutes before we left and I could pin him down in his car seat. This still didn’t deter him from removing socks and shoes so sometimes I wouldn’t even put those on unless it was cold out.
My routine was solid. I would plan what I was going to do and dress myself first and then buttoned, zipped, pinned, pulled and tied my son into his. My hand was poised with the door half-opened when the phone rang. Before I could grab my son he was off, out the door. As I answered hello he was tottering down the steps. I wasn’t too worried. We lived on a farm with miles and miles of flat land. If he took off I would be able to see his head bobbling through a field.
I hung up the phone after five LONG minutes and flung the screen door open as I walked through it. I wouldn’t have to look far for my first clue: a pair of tiny Velcro sneakers on the steps. As I bent over to pick them up, for future redressing, I noticed his socks piled up 20 feet away. And so it began. I began to understand how Hansel and Gretel felt following a trail of bread crumbs.
I followed the trail to the corner of the garage and sighed. Yesterday my other two children had loosed several gallons of water from the garden hose into the pile of dirt behind the garage. It had turned the place into a massive area of quicksand. At least that is what they had excitedly called it. After playing in it yesterday they were quite leery of ever going back to it. I had had to drag my sucked down feet through it yesterday to retrieve two sobbing children. They’d gotten mired up to their knees. I could still hear the sucking sounds as I pulled little bare legs and feet from the unrelenting mud.
As I turned the corner I expected more of the same. What I encountered was a cooing young child in his glory. He was stark naked, up to his thighs in mud. He was just starting to wobble as his bottom smacked into the surface of this lovely, warmed by the sun, smooth, slippery mud that would caress his rosy body. It took an hour to clean him off.
I decided that it was time to “cure” him of this. It was too embarrassing having him do this in public. It took a month but my diligence paid off. The only “habit” I couldn’t crack was the removal of one sock. Yes he only took off one.
It was at this time Michael Jackson started a mini fad of wearing only one glove. My eldest son insisted his brother was just copying Michael and dubbed him: “The Michael Jackson of Socks”.
I personally believe it was his compromise at having to give up the joy of removing all his clothes.
“Honestly!” I sometimes wondered, “Does he not think I would notice this!?”
As I was chiding myself for not consulting him when I bought them, a smile crept onto my face.
An amusing memory, or a Magic Chuckle (see story about what a Magic Chuckle is) that showcased this very issue, popped into my head. At the time I did not know this was even called a “sensory integration issue”. I was just annoyed at how often I had to redress my child every single day.
Remember how Michael Jackson used to go around just wearing one glove? That is how my son got nominated for “The Michael Jackson of Socks”.
Moms of the world can attest to the energy and time that goes into dressing a child. In my case multiply this by five. Sometimes I hated to even bother. In fact if we weren’t going anywhere I wouldn’t and if we were….well you can bet I did it 15 minutes before we left and I could pin him down in his car seat. This still didn’t deter him from removing socks and shoes so sometimes I wouldn’t even put those on unless it was cold out.
My routine was solid. I would plan what I was going to do and dress myself first and then buttoned, zipped, pinned, pulled and tied my son into his. My hand was poised with the door half-opened when the phone rang. Before I could grab my son he was off, out the door. As I answered hello he was tottering down the steps. I wasn’t too worried. We lived on a farm with miles and miles of flat land. If he took off I would be able to see his head bobbling through a field.
I hung up the phone after five LONG minutes and flung the screen door open as I walked through it. I wouldn’t have to look far for my first clue: a pair of tiny Velcro sneakers on the steps. As I bent over to pick them up, for future redressing, I noticed his socks piled up 20 feet away. And so it began. I began to understand how Hansel and Gretel felt following a trail of bread crumbs.
I followed the trail to the corner of the garage and sighed. Yesterday my other two children had loosed several gallons of water from the garden hose into the pile of dirt behind the garage. It had turned the place into a massive area of quicksand. At least that is what they had excitedly called it. After playing in it yesterday they were quite leery of ever going back to it. I had had to drag my sucked down feet through it yesterday to retrieve two sobbing children. They’d gotten mired up to their knees. I could still hear the sucking sounds as I pulled little bare legs and feet from the unrelenting mud.
As I turned the corner I expected more of the same. What I encountered was a cooing young child in his glory. He was stark naked, up to his thighs in mud. He was just starting to wobble as his bottom smacked into the surface of this lovely, warmed by the sun, smooth, slippery mud that would caress his rosy body. It took an hour to clean him off.
I decided that it was time to “cure” him of this. It was too embarrassing having him do this in public. It took a month but my diligence paid off. The only “habit” I couldn’t crack was the removal of one sock. Yes he only took off one.
It was at this time Michael Jackson started a mini fad of wearing only one glove. My eldest son insisted his brother was just copying Michael and dubbed him: “The Michael Jackson of Socks”.
I personally believe it was his compromise at having to give up the joy of removing all his clothes.
Friday, August 1, 2008
What's a Magic Chuckle
I can’t even remember where I heard the phrase but it has saved my sanity more times than I can think of. But here is the best definition I have of it. A Magic Chuckle is something that happens to you throughout the day where you have the opportunity to laugh at yourself and what you are experiencing in a particular moment.
The reason to keep your eyes open for a Magic Chuckle is: A Magic Chuckle doesn’t always “seem” like a Magic Chuckle at the time (referred to as an MC after this point). This means that sometimes it can occur at your own expense, sometimes it happens because of what you do or who you are around or where you are and sometimes it horribly embarrassing. It’s always good to look for these because they are the biggest stress-busters and tension-releasers I know.
So an example of a MC might be: you are taking your child shopping with you and they, in their sense of innocence, might blurt out something impolite about someone. You might actually be thinking the same thing yourself. The only difference is, YOU keep your mouth shut but your child doesn’t.
An example from my life might look like this. My child is developmentally delayed and at the time he was at least five years old. You might have already taught your child by this age, that commenting out loud; on someone’s appearance is something you just don’t do.
On this particular day I was grocery shopping and as we turned down an aisle a rather portly person was coming towards us.
My child immediately turned his head in her direction and openly watched the person walking closer and closer to us. I kept my hand ready in case I needed to quietly and quickly cover his mouth in case something came out of it.
The closer we got the more attentive my son got and I just KNEW we were going to have an expose′ in the middle of the aisle. I wasn’t sure when but my son was just vibrating in anticipation.
I know, I know. You are thinking why I didn’t just whisper something to my child. This however might result in him repeating very loudly what I had just said to him or him responding innocently and out loud anyway. My experience with him had been the less said the better and action was preferable.
I decided to skip buying anything in the aisle and just circle back when this portly person had moved on. As I sped up it seemed like a race for me to get past them before my son spouted his opinion. But we smoothly zipped by, without appearing too much in a hurry or anxious.
I was starting to feel quite pleased with my ability to sense what was happening. You might, in hindsight, say I was feeling a little cocky. “Phew!” I thought, “We got past with no incident and no embarrassment.”
I slowed down a bit after several feet and started to take a deep breath when my son loudly pronounced, “Gee mom! She FAT!” with the emphasis on fat.
The woman abruptly turned around to me and glared at my inability to teach my child manners.
What can I say? At this stage there is no point trying to explain to anyone that my child is handicapped or so sorry but my son is just being honest, or just plain sorry. I’ve never had a happy result from anything I might try to say in a situation like this. My son doesn’t look like he has a disability and I’ve been accused of making it up just to have a reason for the rude behavior. Yes you heard right. If a child has a disability and it isn’t visible then your child is just being down right rude.
I was embarrassed and shushed my child but the damage had been done. I immediately went to the check out and never finished shopping. I didn’t want to run into her at the check out.
I tried as gently as possible to put my child in his car seat despite my anger and I sat behind the steering wheel gripping it while I hung my head. I on the verge of crying but a switch inside me flipped the beginnings of a sob into a spurt of laughter. Just like that I was giggling like mad. I mean when I saw the woman come around the corner it had been the first thing I thought, “She is overweight.”
My son just happened to say “out loud” what I had been thinking. Then events took a turn when I got a little too over confident thinking I had “saved the day”. It was absolutely hilarious. Was I laughing at the woman? Nope. I was laughing at myself and my belief that I had out-smarted my child. I was laughing at my child’s ability to come right out and speak what was so obviously the truth.
Now THAT was a Magic Chuckle.
The reason to keep your eyes open for a Magic Chuckle is: A Magic Chuckle doesn’t always “seem” like a Magic Chuckle at the time (referred to as an MC after this point). This means that sometimes it can occur at your own expense, sometimes it happens because of what you do or who you are around or where you are and sometimes it horribly embarrassing. It’s always good to look for these because they are the biggest stress-busters and tension-releasers I know.
So an example of a MC might be: you are taking your child shopping with you and they, in their sense of innocence, might blurt out something impolite about someone. You might actually be thinking the same thing yourself. The only difference is, YOU keep your mouth shut but your child doesn’t.
An example from my life might look like this. My child is developmentally delayed and at the time he was at least five years old. You might have already taught your child by this age, that commenting out loud; on someone’s appearance is something you just don’t do.
On this particular day I was grocery shopping and as we turned down an aisle a rather portly person was coming towards us.
My child immediately turned his head in her direction and openly watched the person walking closer and closer to us. I kept my hand ready in case I needed to quietly and quickly cover his mouth in case something came out of it.
The closer we got the more attentive my son got and I just KNEW we were going to have an expose′ in the middle of the aisle. I wasn’t sure when but my son was just vibrating in anticipation.
I know, I know. You are thinking why I didn’t just whisper something to my child. This however might result in him repeating very loudly what I had just said to him or him responding innocently and out loud anyway. My experience with him had been the less said the better and action was preferable.
I decided to skip buying anything in the aisle and just circle back when this portly person had moved on. As I sped up it seemed like a race for me to get past them before my son spouted his opinion. But we smoothly zipped by, without appearing too much in a hurry or anxious.
I was starting to feel quite pleased with my ability to sense what was happening. You might, in hindsight, say I was feeling a little cocky. “Phew!” I thought, “We got past with no incident and no embarrassment.”
I slowed down a bit after several feet and started to take a deep breath when my son loudly pronounced, “Gee mom! She FAT!” with the emphasis on fat.
The woman abruptly turned around to me and glared at my inability to teach my child manners.
What can I say? At this stage there is no point trying to explain to anyone that my child is handicapped or so sorry but my son is just being honest, or just plain sorry. I’ve never had a happy result from anything I might try to say in a situation like this. My son doesn’t look like he has a disability and I’ve been accused of making it up just to have a reason for the rude behavior. Yes you heard right. If a child has a disability and it isn’t visible then your child is just being down right rude.
I was embarrassed and shushed my child but the damage had been done. I immediately went to the check out and never finished shopping. I didn’t want to run into her at the check out.
I tried as gently as possible to put my child in his car seat despite my anger and I sat behind the steering wheel gripping it while I hung my head. I on the verge of crying but a switch inside me flipped the beginnings of a sob into a spurt of laughter. Just like that I was giggling like mad. I mean when I saw the woman come around the corner it had been the first thing I thought, “She is overweight.”
My son just happened to say “out loud” what I had been thinking. Then events took a turn when I got a little too over confident thinking I had “saved the day”. It was absolutely hilarious. Was I laughing at the woman? Nope. I was laughing at myself and my belief that I had out-smarted my child. I was laughing at my child’s ability to come right out and speak what was so obviously the truth.
Now THAT was a Magic Chuckle.
Saturday, July 5, 2008
Advocacy 101
Ah what we, parents of disabled children, could teach lawyers about this topic. Here’s what I’ve learned.
1. Be passionate about what you are trying to do. Always stick up for your child.
2. Persevere at all costs.
3. Insist on being present in all dialogues that will result in a change or addition to your child’s support.
4. Participate in these dialogues no matter how scared and upset you are.
5. Investigate and research your child’s rights in the situation
6. Know exactly what the discussion is about and know what you are prepared to accept.
7. Have a strategy and be spontaneous
8. Always be polite, calm and cool no matter what you feel inside.
9. Have an ally and when possible be prepared to add a dash of humor. Laughter is very important because only a healthy, positive and humane person will laugh with you. You need people like this in your life to get done what needs to get done.
Sometimes it reminds people they ARE human.
In this example I'll refere back to these points.
My ally, my child’s teacher, got wind of a meeting the school board and school were having to discuss my sons future form of school transportation (#9). He was moving up to Middle School and they were going to insist on using public transportation. I was horrified at how ludicrous this was.
I contacted the school and calmly asked to be included in this dialogue (#3, #8).
I nervously sat down to the table and wondered if all lawyers feel this way before going to court with a new case (#2). I next asked the board if they would please share their plans for my child’s future (#3).
They wanted my child to take a city bus, loaded with strangers (my internal side comment), to and from school every day. I politely listened while they explained their decision based on budgets.
I sat and waited till the Superintendent of Transportation looked at me questioningly and asked if I cared to comment.
I loved my child’s teacher. She was SO good at following my cue. Imagine two little old ladies having tea together and discussion something they thought was important but had a humorous side to it (#9). As we chatted, the rest of the group melted away. We had a jolly time. (#7)
I turned to face my ally.
“Bev can you just imagine? This whole idea is based on the premise that I can even GET him on the bus!” I started with my eyes sparkling (#5, #9).
My ally nodded with a smile, “Oh yes! Even if you can GET him on the bus.”
“After a lot of coaxing, he boards the bus.” The sparkle in my eyes moved to my mouth. “And THEN – poof - he spies something out the window, rings the bell and gets off the bus to check it out. By this time my speech is interspersed with a few giggles. (#9)
“Oh yes I can see him doing that. And then how will we know where he got off?” she bursts out with a giggle. And the story grew from there.
Finally I paused and took a deep breath. I turned to the Superintendent, the laughter gone from my face and voice, and asked (#1), “How long would it be before you noticed he never made it to school? Where would you even begin to look for him? What on earth would you tell me?” I then deepened my voice to pretend it was him, “Uhm, Mam, I’ve called to tell you we seem to have lost your son.” (#5)
He had taken a breath to speak and I put up my hand to stop him.
“Can you imagine the legal issues you would find yourself in and just how much it would cost?” (#5, #6) I paused and looked each person in the eyes.
The whole group sat dumbfounded by the turn the conversation had taken.
With the breath he had been holding, the Superintendent looked at me in a resigned manner and mumbled back, “ Uhm, Mam. You’ve made your point quite clearly. I guess he’s not ready for this.”
Shortest, successful meeting, I’ve ever attended.
1. Be passionate about what you are trying to do. Always stick up for your child.
2. Persevere at all costs.
3. Insist on being present in all dialogues that will result in a change or addition to your child’s support.
4. Participate in these dialogues no matter how scared and upset you are.
5. Investigate and research your child’s rights in the situation
6. Know exactly what the discussion is about and know what you are prepared to accept.
7. Have a strategy and be spontaneous
8. Always be polite, calm and cool no matter what you feel inside.
9. Have an ally and when possible be prepared to add a dash of humor. Laughter is very important because only a healthy, positive and humane person will laugh with you. You need people like this in your life to get done what needs to get done.
Sometimes it reminds people they ARE human.
In this example I'll refere back to these points.
My ally, my child’s teacher, got wind of a meeting the school board and school were having to discuss my sons future form of school transportation (#9). He was moving up to Middle School and they were going to insist on using public transportation. I was horrified at how ludicrous this was.
I contacted the school and calmly asked to be included in this dialogue (#3, #8).
I nervously sat down to the table and wondered if all lawyers feel this way before going to court with a new case (#2). I next asked the board if they would please share their plans for my child’s future (#3).
They wanted my child to take a city bus, loaded with strangers (my internal side comment), to and from school every day. I politely listened while they explained their decision based on budgets.
I sat and waited till the Superintendent of Transportation looked at me questioningly and asked if I cared to comment.
I loved my child’s teacher. She was SO good at following my cue. Imagine two little old ladies having tea together and discussion something they thought was important but had a humorous side to it (#9). As we chatted, the rest of the group melted away. We had a jolly time. (#7)
I turned to face my ally.
“Bev can you just imagine? This whole idea is based on the premise that I can even GET him on the bus!” I started with my eyes sparkling (#5, #9).
My ally nodded with a smile, “Oh yes! Even if you can GET him on the bus.”
“After a lot of coaxing, he boards the bus.” The sparkle in my eyes moved to my mouth. “And THEN – poof - he spies something out the window, rings the bell and gets off the bus to check it out. By this time my speech is interspersed with a few giggles. (#9)
“Oh yes I can see him doing that. And then how will we know where he got off?” she bursts out with a giggle. And the story grew from there.
Finally I paused and took a deep breath. I turned to the Superintendent, the laughter gone from my face and voice, and asked (#1), “How long would it be before you noticed he never made it to school? Where would you even begin to look for him? What on earth would you tell me?” I then deepened my voice to pretend it was him, “Uhm, Mam, I’ve called to tell you we seem to have lost your son.” (#5)
He had taken a breath to speak and I put up my hand to stop him.
“Can you imagine the legal issues you would find yourself in and just how much it would cost?” (#5, #6) I paused and looked each person in the eyes.
The whole group sat dumbfounded by the turn the conversation had taken.
With the breath he had been holding, the Superintendent looked at me in a resigned manner and mumbled back, “ Uhm, Mam. You’ve made your point quite clearly. I guess he’s not ready for this.”
Shortest, successful meeting, I’ve ever attended.
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