The Smell of Purple

He was in his room too long. I was getting cocky about dealing with his behavior and somehow this must be God’s way of reminding me: nothing is predictable with this young man.

My son had, what a lot of parents will recognize, as a melt down. He had screamed and threw things around the room because... well I can’t even remember why. It doesn’t matter. It usually happened because his ordered routine was jumbled around.

What I had instituted was technically not a time-out but a “well why not go to your room to have time by yourself to just calm down.” It appealed to him because usually the other reason he would have a meltdown was because he was feeling overwhelmed. We didn’t use it as punishment and he still had his toys in there. More like a time of reflection, quiet and calming. It was actually quite effective.

But this time he had been in there too long. Usually he came out smiling in about 15 minutes and this was 30.

I walked down the hall feeling like I had a block of cement in my stomach. What could he have done in his room in that amount of time. Well he could’ve done lots. The worst thing? He could’ve opened his window, pushed his chair over and climbed out the window because something caught his eye. I started to feel panic well up from the block to my chest.

I opened the door and was surprised to see him all tucked into bed with the covers up to his neck. He was certainly calm but he seemed pleased with himself and this did not bode well.

“Hi honey.” I said quietly in that high pitched kindergarten teacher voice I used. He seemed to react well to that.

“Hi mommy.” He said quietly and calmly with a beatific smile on his face. The covers were still tucked under his chin and it was then I noticed all his clothes neatly piled on the floor beside his bed.

I slowly walked to the bed and continued, “Well sweetie what have you been doing all this time?”

“Nothing really. I colored a bit.” He calmly replied.

I was still nervous because he still had the covers tucked under his chin as if it was the most normal thing to do in the middle of the day.

I slowly moved forward, “Hmm why not get up and show me what you colored.” My hands reached for the covers and slowly pulled them off.

There under the quilt his small naked body was covered with purple marker. I felt my jaw drop open and I stuttered in search of something rational to say.

“ Don’t I smell good?” he asked. My eyes wandered from his neck, to his belly, his private parts and finally landed on his toes. He was literally colored from neck to toe and more so in some parts than others.

I was completely disarmed by his candor and the innocence of his question. “Uhhmm yes you do.” I noted the sheets were colored as well.

I scrubbed him for an hour until he complained of a burning sensation. It might’ve gone unnoticed by the general public except they started school swimming lessons that week. That was actually a blessing since it meant more exposure to cleansing water.

The sheets? Well I eventually cut them into rags as the sheets aged but whenever I have to pull out a rag and it has purple marker on it....well a smile just creeps over my face as I remember.

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.

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 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.

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.

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.