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 adapted. Show all posts
Showing posts with label adapted. 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.
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.
Wednesday, July 2, 2008
A Gift From God
Like a lot of parents who have a child with a disability, I belong to a support group. In this group, we all have a child with the same disability. Like a lot of parents who have a child with a disability, I belong to a support group. In this group, all the parents have a child with the same disability. Sometimes the support group touches on this subject of how the parents can accept this situation they find themselves in. Members often remind everyone that the reason we have our child is because it is a gift from God. Yes, this child is in our lives because God knew unequivocally, we were the only one capable of handling this child’s life. This belief starts as only an affirmation but it does move most of us forward.
I think it takes us through the first stages of our realization of the work we have cut out for us. It heads us in the direction of the first stage of our recovery from this disability: acceptance.But is this enough? I don't think so. There are millions of little steps involved. I firmly believe that if we smack ourselves down on the sidewalk and feel overwhelmed at the task before us it means we gave up.Is this disability, as a parent, genetically or biologically inherited. Of course not but it IS spiritually inherited if we believe that God chose US to raise this child. I believe God knew we could overcome our own disability.
What made me reach the second step? It was a sharp reality check. Someone once asked me how I had managed, all these years, to raise my child and take care of the rest of my family. My eyes widened and I was startled by the question. It had never occured to me to think of this task in that way.All I could say was, my child, was my child. He had always been this way. It was not like all of a sudden we had a maze of things to learn and do to meet my child’s needs.My child has never known any difference and neither has anyone in our family. With each step of the journey, if a new road block was encountered, it was either attacked and resolved or gently nudged into alignment of what we thought would work. So what became a reality to me was this: this wasn't some new, over-the-top, insurmountable problem every day of my life. The reality was we took each day in our stride. If something needs to be adjusted we did it. If steps needed to be taken they were taken. If I needed to advocate for my child to another group, organization or agency, it was done. Simple as that.
It wasn't always that easy but God didn't drop a HUGE problem in my lap all at once. God eased me into the job gently. I just never asked what the job description was.
I think it takes us through the first stages of our realization of the work we have cut out for us. It heads us in the direction of the first stage of our recovery from this disability: acceptance.But is this enough? I don't think so. There are millions of little steps involved. I firmly believe that if we smack ourselves down on the sidewalk and feel overwhelmed at the task before us it means we gave up.Is this disability, as a parent, genetically or biologically inherited. Of course not but it IS spiritually inherited if we believe that God chose US to raise this child. I believe God knew we could overcome our own disability.
What made me reach the second step? It was a sharp reality check. Someone once asked me how I had managed, all these years, to raise my child and take care of the rest of my family. My eyes widened and I was startled by the question. It had never occured to me to think of this task in that way.All I could say was, my child, was my child. He had always been this way. It was not like all of a sudden we had a maze of things to learn and do to meet my child’s needs.My child has never known any difference and neither has anyone in our family. With each step of the journey, if a new road block was encountered, it was either attacked and resolved or gently nudged into alignment of what we thought would work. So what became a reality to me was this: this wasn't some new, over-the-top, insurmountable problem every day of my life. The reality was we took each day in our stride. If something needs to be adjusted we did it. If steps needed to be taken they were taken. If I needed to advocate for my child to another group, organization or agency, it was done. Simple as that.
It wasn't always that easy but God didn't drop a HUGE problem in my lap all at once. God eased me into the job gently. I just never asked what the job description was.
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