Thursday, August 14, 2008

No Such Thing As Irresponsibility

I was coaching a client of mine when I came up against this comment. It was in connection to “fun” or “having fun” and “irresponsibility”. I’m not sure why it is, but as adults, we tend to link those two words together. As we grow up we believe that to have “fun” means being “irresponsible”. I think the adult population of the world is in dire need of a break from seriousness in the form of FUN.

I was curious to see what the difference in definition was so I looked it up and found that my dictionary stated that irresponsible was: lack of someone being in charge, having no authority, no accountability. Then I was intrigued to see what the definition of fun was. It was not listed in my dictionary. I started to giggle as I realized the significance of that.

In a world fraught with seriousness my own dictionary did not see fit to have the definition of fun. I was quite intrigued by now, so I asked my local speaking group, if they thought there was no such thing as irresponsibility and if fun was being given a bad name.

They all felt that irresponsibility was being unaccountable but that fun was not the replacement for it. Which is quite strange but amusing, when you realize I didn't really ask them what fun could replace . I persisted and asked how they would define fun. I was brushed off and they all replied, “Well you know… don’t ask such a silly (irresponsible) question.”

I believe as we become older we decide that to even have fun is irresponsible. Someone has to be in charge, someone has to have authority and most definitely someone has to be accountable. Do we take turns at this? Is there a fight over who’s the boss? In our rush, as adults, to be responsible did we throw “fun” out the window with the proverbial bath water? I didn’t understand why the two could not co-exist in a world of adults.

I know that fun is important to me. I know that with a handicapped child I’m very lucky. I get to play whenever I want with my child-like son and no one is the wiser. Was I supposed to share this secret? Was I being irresponsible by not sharing this? Nope, I always had too much fun to worry about what others were thinking. I suppose that meant I was in charge but it never felt that way.

I know that a lot of times my friends knew exactly how to get me involved in what they were doing. There were plans to go somewhere or do something. There would be much cajoling and begging.

“Come on Maureen, it’ll be a lot of fun and if it isn’t fun right away, you will know how to make it that way.” Did this mean I was responsible for making things fun? Now wasn’t that a bizarre position to be in. Imagine me being responsible, in charge of and the authority on fun. Would I be completely irresponsible if I didn’t respond or become accountable for the fun that was happening? I was baffled why it was me in charge of the fun department.

I think that in our rush to become responsible wage earners, parents, family members and business people we lost track of what brought meaning to life. What was the point of all that work if there is no fun? How responsible and accountable was that?

All I know is: I’m tired of being responsible, in charge and accountable for the fun that happens with the other people in my life. I’m going to be completely responsible and be only in charge of the fun in MY life.

Sunday, August 3, 2008

My Sons Greatest Handicap

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.”

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.

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.

Tuesday, July 8, 2008

The First Time

I remember, so clearly, the day I was told my child had a disability. It was an explosion of emotions. Some emotions were conflicting which didn’t make acceptance occur in a smooth motion.
I was so terribly upset that my child should be singled out for this rare disorder. By the time I got home, from the hospital, I was shocked to realize that I was really upset that I had been singled out. My child would wake up still the same the next day but I never would but how was I going to cope with this. It was the most selfish thing I ever felt.
Then I was angry – at just about everything. I was angry at how the Doctor had “coldly” informed us. I was upset that the only thing my ex-husband was concerned about was our child’s ability to have his own children. I was also angry that before we were even out the door he was looking for someone to blame for this and it was me. Neither of which were his fault because he didn’t realize he was disabled too.
I was angry that I would have to deal with, yet another problem, when I still wasn’t over the last one. I was angry it was my child and not someone else’s. Silly me, since there are millions of “someone else’s child” out in the world.
I was relieved. Man, how relieved I was and ashamed at my relief. At last I knew what was wrong. My son’s disability had a name and I had something to start on. I was relieved that it would give me direction towards what to do next and that “next” was to find out as much as possible about this disability.
I felt vindicated that after all the years of saying, “Something’s not right here.” I was right. Not an “I told you so” – right, but more like, “Hey my intuition was heading me in the right direction after all.” I knew I had been okay in trusting my instincts, as a mother. Previously I found, that the more things that went wrong with my child, the more I was apt to blame myself for maybe something I had done.
I was excited about the challenge of finally making headway to learn what I needed to help my child. I had a direction to march off to and it would only mean more help for me and my child. At the time, I just didn’t realize how much help it would mean for me.
After feeling all these feelings I then realized how self-centered all these emotions had been. This was the first time I realized, as a parent, how disabled I was. I would have to learn parenting all over again. My expectations for my child had to completely shift and I had to re-examine my own life expectations. I was no longer the part-time guardian of my child till he became of age. I was probably now going to be the life-time guardian of my child.
This thought brought on a whole new spate of feelings, which I promptly shut down. I wasn’t ready to look at this aspect of my disability yet. Right now my child was a child and he needed me to be strong, focused and to most certainly dig out my sense of humor from my toolbox. I had a feeling that for the next several years I was going to need it.

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.

Friday, July 4, 2008

No Such Thing as Normal

The whole concept of what is “normal” shifted dramatically when I discovered I was the parent of a child with a disability. I touched on it briefly before. It’s all a matter of perception and if what I experience has always been that way for me then it is “normal” for me. So when someone finally asked me how I coped it caught me by surprise.
When I stumbled into the arena of “parenting a disabled child” the word normal was the most infuriating word I ever experienced. It led to anger, resentment and pain. What a nasty group of feelings I had to deal with when my focus should’ve been on my child. The word normal had everything to do with MY world being turned upside down. It was the most selfish word I could’ve attached to myself. It was also the most destructive.
At first it sent me into a tailspin of depression. Then I guess I went through all the stages of grief. What got me out of this cycle was the fact that this was not a life sentence for me. It was a diagnosis for my child. This was not about me. This was all about how my child’s life and future were going to turn out.
So when you believe the word normal exists it means that you have the unending job of comparing yourself to every other family you ever come in contact with. It means constantly coming up with excuses for why you do what you do and why your child will never be like other children. It means you are never good enough and failed as a parent. It means that every time you come to a roadblock it is painful part of the journey.
What I found out is that there is no such word as “normal” only the following words: acceptance, learning, changing, adaptation, growth and progress.
Instead of an unending job of dealing with problems it became a belief of “How do I accept this gracefully”. It meant accept what needs to be done and deal with it because it is just a part of life. Instead of an endless experience of yet another thing to deal with it became an opportunity to learn something new, an exciting challenge and yes even an adventure. When I felt overwhelmed by yet another glitch in the journey of my life I reminded myself that here was a change to adapt and grow.
What also became apparent was that despite all the times it FELT like I was moving backwards there really was progress happening and that is where support comes in handy.
The first thing I did was look on the internet for a group who had a child with the same disability and I signed myself up. What I found in this group was not just an ordinary support group. I found a whole group of parents on the same journey as me, disabled as me and willing to learn as me. I found that it was my cheerleading squad when something good happened, my shoulder to cry on when something bad happened and a storehouse of suggestions when what I tried to do didn’t work.
So what is normal? Well like I said, there is no such word.

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.

Tuesday, July 1, 2008

Confessions of a "Handicapped" Parent

It came to me in a flash! I was trying to think of a name for this blog. I wanted it to be for parents of disabled children and I wanted it to be short. If I just said "handicapped parents", then someone might think it was for a parent with a disability.
Then it dawned on me... okay it hit me like a hammer. This blog was never about my own child, who is disabled. This blog and story has always been about me. It was ME who was truly disabled and my stories are a journey of how I learned to cope with, deal with, grow and cure myself of this disability.
Children who are developmentally or physically disabled instinctivley and inherently KNOW what they are capable of. It us, the parents, not our children who have the disability.
As parents, we have been bombarded all our life about what a parent is and should be. There is the media, our parents and mentors and role models all throwing images and ideas on how to parent but NO ONE ever tells you how to be a parent to a child with a disability.
When our child is born we too are born. We are born blind to what we can do, say or be. We are blind to what our child is capable of.
We are deaf to our own inspiration and we are emotionally crippled by our constant questioning of: why me?
We are also born again mute. We speak about what we need and what our child needs and often the people and organizations around us cannot hear us.
We are paralyzed with anger and resentment because no one understands what it is like and we often become exhausted trying to make a case to people who can help us.
This this blog is not about your child or mine. There are millions of disabilities and diagnostic categories our children will fit into. But there is only one place for a parent who's child is born with or a child who develops a medical issue. This blog is for you.
This blog is all about offering a course of action, through sharing about the journey to recover from my "birth" as disabled parent to an adapted parent.