Sunday, September 30, 2007

Turn about is fair play

My mother doesn't know about my blog and if she did she doesn't have internet connection at her house. Just not a techno savvy person. However I was thinking over this weekend and what good is it to laugh at someone else if you can't laugh at yourself. So in this spirit, I give you the following story.

When hubby and I were first married we were very monetarily challenged. We had bought our first house, a tiny little one bedroom house that looked like it could have been made of gingerbread.

I had taken a job babysitting for a friend's son during the day so I could be at home with our daughter who was only a few months old. The boy was about 4 at the time and we would play all kinds of games and entertain each other throughout the day. He even on occasion helped out with the house work.

One day when he was helping with the vacuuming, I remembered what my Mother in law had told me about cleaning the coils under the fridge. She had told me if I vacuumed the coils it would reduce the energy bill. I figured it didn't hurt to try as we could use every penny pinched. I pulled the hose off the upright, bent over and started cleaning. The little boy, being the good little helper that he was, pushed the upright a little closer so I would have enough hose to reach.

The phone rings, I reach around and switch off the vacuum and as I go to stand up the vacuum falls over, the roller brush stuck in the back of my hair. Turns out that when he moved it closer to me the brush of the vacuum was still rolling, and my hair that was quite long got sucked right in. I am quite upset as I am now a Siamese twin to a vacuum cleaner with no means of separation. I finally answer the phone in tears.

My husband was on the line demanding to know what was wrong with me and in between my sobbing and trying to tell him what happened, he decides he had better come home. The little guy had grown quite concerned and I laugh for him when he asks "Are you stucked?"

A short while later, still not able to get the evil thing out of my hair, I hear a knock at the door. It's the little old lady that lived two doors down. She knows I am home but I am not keen to open the door in my state. I go to the door, the vacuum hanging from my head and open the door a tiny tinny sliver to see what she wants.
"Honey, are you OK?" she asks.
"Yes I fine. Did you need something?"
"Well...uh..your husband. A lady came over and hit his truck head on."
"Is he OK?" I forget about my little problem for second and start looking up and down the road my stomach in knots.
"Oh yes, he is fine. The EMS are checking him out. The wreck was right before our house. He keeps telling the police that he has to get to his wife that somethings wrong. I told him I would come check on you."

I fully open the door in a new state of tears and show her the vacuum hanging from my hair. She in turn goes to get her husband to see if he has any tools to get me loose. They were a great old couple and I'm sure they had one hell of a laugh when they got home, but for the time it took to get me loose they never cracked a smile. They were even so kind to watch over the two children while I ran down the road to see for myself that my hubby was OK. He was fine, though I was feeling incredibly guilty.

Friday, September 28, 2007

Round brushes and dicie boxers

Sleep was not easy to come by with the constant rumbles of thunder and flashes of lightning. When I allowed myself to fully awaken the teens were ready, so I threw on some jeans and a t-shirt, socks and shoes, did a quick brush through my hair, then grabbed coffee and keys and we were out the door. The lightning and thunder had not relented and the rain was coming hard and constant making the air cold. I didn't much care for driving on this ominous morning, but responsibilities are not put off for inclement weather.

There is a five car pile up on the road going the other direction across from Connor's favorite elephant that is safe in the confines of the putt-putt. As we near the high school I grew even more nervous as I know there are teens with very little experience in driving on the very wet streets. I drop the oldest teen off at the front doors of the school safely and relatively dry.

The youngest teen and I find an alternative route to the middle school as the traffic has thickened considerably from the 5 car pile up. We do eventually run into a bit of traffic but thanks to the detour she arrives at school with time to spare.

I get back to the quiet and dry house, hubby and Connor still asleep in their cozy beds. I try to take a bit of time to sit quietly with a cup of coffee and read email. I barely get signed in and my in box opened when I hear knocking at the side door. I am startled at first but the urgent rapping on the door tells me it's my mother.

Swearing under my breath at the inconvenience I go to the door. As I get closer I see her outline silhouetted on the drapes, but something seems strange about it. On the left of her head there appears to be a horn. I dare a peek out of the window and realize the problem straight away. The poor thing is standing at my door step with a round brush sticking straight up in the air, relentless stuck in the hair by her left temple.

As I open the door she pleads for help. I try to restrain myself from laughing and instead ask her if she drove all the way over like that. When she looks at me I realize what a stupid question I had asked. She sits at the table and drinks some coffee as I go gather supplies that may help in freeing her head without leaving a bald spot. About this time the two layabouts have gotten up from bed to see what the noise is about. Hubby asks me to turn her head so he can run through in dice and flame decorated boxers to get to the basement laundry room. I am glad her head is turned when he comes by, she is too emotionally fragile for the look on his face when seeing her plight.

As I start to work on the problem Connor wanders over to see what is going on. He doesn't understand why she has a brush fixed so close to her head. Being one who does not like a brush to be anywhere near his head, he is terrified. Aversion to people with brushes stuck in their hair, who would have guessed.

After Connor is calmed and attention directed elsewhere I continue to work. Hubby comes back upstairs to asks the same stupid question I did. "You drove all the way over like that?"
"Well it's no different than those kids wearing picks in their afros!" she defends, arms flapping.
"Yeah it is. They can get those out when they need them. How did that happen anyway?"
"I sneezed. I was curling my hair and I sneezed." she explains.

Thankfully he doesn't go on about it any longer so I don't have her here in a blubbering mess while trying to get this brush out. She is so tender headed that every touch is meet with "eeks" and "ohhs" and hands flying in the air as if I was ripping the hair out of her skull by the handful.
"Can you just cut it out?" She is reaching her limit.
"No I can't have you going around looking weird. You just went through all the trouble of having your hair done and we are going to keep it in tack!" I wouldn't like to see her back in frizzy ponytails.

That gave me an idea and I run to the bathroom and grab a pair of nail clippers. I clip off the bristles of the brush and have her free in a matter of moments with a majority of the hair still attached to her head.

Later that night as I am recounting the story to my sister over the phone she starts to laugh. Not just a giggle but a tears in your eyes and face hurting kind of laugh. I thought it was a funny situation but hadn't thought it that hilarious. "What's got you in stitches over there?" I ask
"Well it was on her left side so she couldn't hide it from other drivers could she?"
"No I guess not." Still not clued in.
"Well imagine you are going down the road and you happen to look over and see a rusty old white 72' Chevy pickup with pink and purple pin striping, and then you see an old woman driving it with a brush sticking up out of her head! Just goes to show you can't go on a first impression can you?"

Thursday, September 27, 2007

Breakfast with Friends

Very rough evening so I guess I am kind of cheating and taking a Wordless Wenesday late. Oops guess not totally wordless.

Wednesday, September 26, 2007

Just say it, please!

For awhile I thought he had problems with the muscles in his mouth (Apraxia), because sometimes when he opened his mouth to say something his tongue would just dart around everywhere and words would fail to come. Now I believe he can say anything. Sure some of the consonants could use refinement and his grammar isn't the best. He always pronounces cookie as tookie, lion as wion, water as wader, but I look at these as 3 yr old kid pronunciations.

He has short sentences, most scripted but we all have to start somewhere. His conversations have few exchanges but we are seeing more and more back and forth.

He shows his teasing sense of humor at the dinner table while we eat. Putting his knees in his chair he puts the weight of his upper body on his elbows, leans sideways, looks at his Dad and says "I gonna fall!" in the cutest sing-song southern drawl.
"You're not gonna fall if you straighten up in your seat." Dad responds.
"I gonna fall!"
"No you're not, sit down right and eat."
"I gonna fall Daddy!" He screams and laughs. Daddy just can't help but smile because it is too darn cute and he said "Daddy."

I had swore that if he ever said "Mommy" I would probably faint from shock. I used to spend so much time teaching him that word, just to have him stare blankly back at me or say something totally different. He started talking never saying it and then when he did, he was only making noises. He wasn't talking about or to me at all. I was sick of all the evaluators and his OT calling me "Poor thing." when they found out.

One night at dinner we were playing a game of "who is that?". We would point to another person at the table and ask "Connor, who is that?" Finally one night I was blessed and he said "Mommy" and was talking about me! I didn't faint or fall out of my chair but sat there and cried a little, hoping that it wouldn't discourage him from saying it again.

It hadn't discouraged him and we are hearing it more and more. One night last week when it was Daddy's night to tuck him in, he sat up real fast looked around his room and asked "Where Mommy?" I was in the bathroom and heard him. Between you and me, that felt really really good.

Tuesday, September 25, 2007

Bobby and life lessons

He was a year younger than me and we lived next door to each other since he was 4. In many ways he was just like any other boy. He would catch turtles, frogs, crawdads, fish, and any other creature of the creepy crawly variety from the nearby creek. He taught me where to hold a turtle so as not to be bitten. Taught me the different types of turtles and showed me soft shelled water turtles I had never seen or heard of before. He taught me that crawdads swim backwards and in order to catch one you had to have your net behind them.

He could walk, jump, and ride bikes with the best of us. He couldn't run very well, although his fist were balled up in front of him and pumping, his lower half didn't fully cooperate so he barely got up to a jog.

We played together often but as we got older I found less and less time for him. Truth was, as time went on I didn't like him much. I was getting more mature and engrossed in who liked who, and who said what about who while Bobby was still catching creepy crawlies. He was gross too, eating jelly and ketchup on eggs, rarely having his mouth closed. He would get off of the short yellow bus in the afternoons and if I was outside, he would declare to everyone that I was his girlfriend. At his house he would often come out of the bathroom without his pants. Though not something I cared to witness his was the first I ever saw of the male anatomy.

My Mom told me that Bobby was mentally retarded. When I asked what caused that to happen to him, she said these things happened sometimes when the Mother was malnourished during pregnancy. So I imagined my poor neighbor not being able to feed herself while pregnant and now having to pay the consequence.

This is what Connor has taught me;

1. That goofy run Bobby would do was the cutest, though I didn't think so at the time, I do now.

2. Bobby's Mother was not starved during pregnancy. She was/is a hardworking, brave, and caring woman that loves her son very much.

3. Either my Mom didn't like to admit she didn't know something or she was misinformed.

4. Autism and Mental Retardation are different animals when it comes to eye contact, communication, socialization. Bobby had no problems in these areas.

5. They are the same in that they both have special needs.

6. Don't judge a parent by the actions of a child.

7. I had been a very judgemental person.

8. Don't Judge!

9. I could have been a better friend to Bobby.

10. Sometimes it is the youngest and smallest that teach the best life lessons.

Monday, September 24, 2007

Occupational Monday

A trip to the Goodwill to drop of a trunk full of old unwanted stuff didn't take as long as planned, so we showed up 10 minutes early for our 11 o'clock appointment. She was 15 late when another OT came out to tell us she was dealing with a meltdown and would be out as soon as she possibly could. "OK, no problem." I say with a smile.

With the same techniques as last week, using the stroller and superman vest, I added a few picture books and wax candy. We were good to wait for awhile yet with no tantrums. She arrived a few minutes later and when Connor sees her he starts to unbuckle himself and I take off his vest. He follows her through the halls bouncing and humming.

I have no idea what she was planning to do with us today, but I told her I would like for her to model joint compressions for me again. Connor had been adversive to it the last week when I get to his hands. I also let her know we were interested in trying the listening program. She had told me that they didn't move forward to the listening program until a good sensory diet is in place.

So when she runs off to get the CD player and headphones, it occurs to my that she must be under the mistaken idea that I have a clue of what I am doing. For those who wonder what listening therapy is, well I have a hard time explaining it but the link is here.

He was hesitant to wear the earphones at first but soon he was zooming around wearing them with no problems. She told me to watch him to see if there were any positive or negative effects. Apparently sometimes good things happen immediately and sometimes it takes a few tries.

When we get home he ate a peanut butter sandwich. He didn't tear it apart and play in it as usual, he ate it. When we went to my niece's volleyball game tonight he stayed in his stroller watching contently for the most part. The loud noises and lights did eventually get to him, but it was much better than usual.

No he didn't walk up to me and say "I need to go potty." or get himself dressed, or sit with me on the bleachers at the game like other children his age. Nor am I sure that it was the listening therapy that caused the good eating and temporary calmness. He could have been starving. He could have been just tired or very interested in the game.

At the end of the day however, progress is progress, and I will take whatever progress that comes our way as a huge blessing.

Thursday, September 20, 2007

Proud Mommy

We are all proud of our children. Many different reasons for being proud of them, just for being ours is a big one. Just recently I have been bursting at the seams with pride because of a daughter making honor roll for her first time, finally getting past the constant forgetfulness stage. Proud of a daughter for being talented beyond all reason in playing viola and making All County. Proud of a son that has slowly started to show empathy and follow directions.

For example, tonight while I was tucking him in and we had read our bedtime story, I hung around to snuggle and rub noses. We were getting giggly and I was pretending I had to sneeze.
"AH, AH, AH, CHOO!" and I blew a raspberry on his belly. He thinks this is hilarious and after the first time he starts to imitate me.

"AH, AH, AH, CHOO!" Clunk! We bang heads. He puts his little hand on my forehand and asks "OK?"
"I'm OK. Are you OK?" I rub his forehead and when he smiles at me I tell him "OK I think we need to try that again."

He puts a hand on either side of my head and before I realize what he is doing his head comes toward mine. Clunk!

Wednesday, September 19, 2007

Routine of routinely having routine messed up

We have a schedule in our house. It isn't a strict schedule laying out every minute of the day. Connor doesn't seem to need such strenuous steps taken for routine. He has come to expect when a certain event happens that another particular event will follow. Human nature I think to expect things a certain way, we all do this to a certain degree.

When he gets up in the morning he knows I will take him to the bathroom. I will help him get dressed and groomed. After he knows breakfast will be on the table. I have come to expect that depending on the bread and sugar content, it may or may not be eaten.

He knows when we will play and when therapies are coming. A pitiful little timer helps us transition through. Sometimes there are discrepancies when Connor thinks the timer is wrong, sending it flying across the room when it sounds time is up.

His favorite part of the daily routine is getting in the car and picking up his sisters from school and seeing the elephant statue at the local putt-putt. So as always, I put him in his car seat, I walk around, get in and fasten my seat belt. The car would not start. It sounded like it was trying but just couldn't fire up. I call Hubby and tell him the problem and he offers to go get the girls.

No sense sitting in the car any longer so I get out and go around to get Connor. I unbuckle, he rebuckles. This happens a few more times and then he decides to climb over the backseat into the hatchback. I keep myself calm and chase him through the car all the while explaining that we can't go, the car wont start.

I finally get a hold on him and take him back into the house. Once inside he is furious and goes into a fit of turning toy tubs over and throwing and screaming. I could just imagine what he was thinking...You didn't do it right Mommy! Where's Gracie? Where's Melody? I've already said Bye-bye to the duck! I wanna see the elephant!

I try to console when I can and stay out of the way when I can't. I let him have his fit, because honestly it ticked me off a little too. Dumb thing said it had over a half tank of gas when in fact it was empty. I more than empathised with him.

After awhile things became more normal and Connor was returned to his calmer state. I pick this moment to have him help clean up the destruction of his fit. He wasn't happy about it at all, but it was expected.

Hopefully his Mommy will get things right tomorrow and realize the logical thing to do after getting into the car, is to leave the driveway.

Tuesday, September 18, 2007

No, I hadn't heard that!

Tell-tale words from a gossiping woman. My neighbor has caught me outside, unloading the car. She and others on our street must think we are strange, coming and going at all hours of the day (therapy), digging in the back yard and not planting anything (heavy work), loads of sand in the yard (sensory and heavy work), and Connor momentarily standing on the window sill naked (showing off his stripping and climbing skills). I tease my husband every so often when we are outside and see neighbors peeking at us, "Honey, come look at what the Osbourne's are doing now!"

"Hey! Can I throw a ham at them?" he asked.

When I was young the neighbors thought our household to be odd as well and they thought correctly. My first step-father parked his Harley in the living room. He would also stand out in the yard and yell "Kick back!" at the police, that were constantly at a suspected drug dealers house but never arresting anyone. When a strong downpour of rain came with out lightning or thunder, my Mom urged us to go out with a cake of soap or a bottle of Dawn dish soap and play in it. The neighbors would also witness Mom wrapping a frozen pizza in aluminum foil and putting it on the grill from time to time. Weird as they are I still recommend the later two if you can manage it, great fun.
This particular neighbor is nice enough although a tad nosy. We stand in the yard and make small talk. It occurs to me that even though I see her brow furrow at times, looking at us outside doing "odd" things, she is still nice and speaking to us. It then hits me that I have never bothered to tell any of my neighbors about Connor's diagnosis. Not that it would stop them from thinking we are strange, but I wonder if it isn't something they should know.

So how do I bring it up? It would never do to follow up "Nice weather we're having." with "Connor has autism." I wait for an opening and she provides it.

"So how are the kids doing in school?" she asks
"There doing great. Connor is starting school this year too. Although it will be later in the year. They have a lot a placements to work out yet for 3 yr olds."

I know that she knows that school programs in this area are not provided before kindergarten unless it is for special needs or you have a low income. I see the wheels turning and I wait. Right before smoke pours out of her ears she looks at me, eyes bulging and looking scandalized.

"Connor has autism." I explain
"No, I hadn't heard that!" she exclaims. I can't tell if her look is that of shock and concern, or shocking glee of being handing a juicy tid bit from the horses mouth.

I excuse myself "Lots to do, car to unload. Nice talking to you."
As I continue to unload the car of children and various belongings, that phrase keeps playing in my ear No I hadn't heard that! and I start laughing. It sounds like maybe she has heard alot of things about my family, just not that.

Monday, September 17, 2007

Occupational Monday

I switched up the tactics today. We put the superman vest on before getting in the car. On arrival I put Connor in his stroller. We all know she was late to show, we were too. Just a few minutes of looking at a book about a train with animals in it. It went beautifully.

She appears and as I promised Connor, I released him from the stroller and vest and he walked calmly to the "Bean Room" with her. He spent most of his session in the tent with all the dried beans and rice again. The amount of words coming out of that tent was astounding and it hasn't stopped all day.

On the way home when he would normally be wiped, he has turned into the spotter.

"Hey bicycle!" and I could barely see it but, in front of the car wash down the road was a bicycle.
"Horse! Horse!" Sure enough there was one of the horse statue they placed through out Louisville.
" duck."

"Hey! What abouwowt me?" Upon hearing this I decide to take the advice some of you gave me and turn this into a conversation.
"What about you?
"Hey! What abouwowt me?"
"Do you need something, hun? I ask, feeling like I need to come up with a more original and engaging repertoire.

"Oh no!"
"Oh no!"
"Whats wrong?"
"Naughty Gnomes."
"I don't see any gnomes." I fear I'm losing grasp of the situation as he starts scripting Thomas and Friends.
"On on faster faster....stop stop I wanna stop......I'll runaway."

"Ice cream? Popsicle? Yellow?"
We are home, we go to the kitchen and look in the freezer together. He pulls out a box of ice cream sandwiches that someone put back in the freezer after taking the last one. Grrr! He looks in the box, turns it upside down and says, "Empty! All gone! All done! Where did it go?"

He changes topics quickly "Diaper. Poopy."
My jaw drops at this late breaking news. Neither words have been in his vocabulary. Is he dirty? I don't smell anything, does he need to go? I try to steer him to the bathroom. Getting him through the doorjamb is more difficult than putting a cat in a tub of water.
"Diaper. Poopy."
"You need to go to the bathroom?" still giving gentle pushes toward the door.

He is getting frustrated with me and takes my hands to his hips making them go in a downward motion. He wants to be changed. Changing him in front of the bathroom door, determined that what ever is going on in that pull-up, I will somehow steer the event toward the toilet, I find he isn't dirty or wet. His has a large amount of dried beans and rice stuck to various private areas.

Sunday, September 16, 2007

Baby Mine

Family reunions are tough for most of us, and he did well for the most part. It's the times when he takes flight and runs, not walking willingly back, instead having to be carried while he is fighting us that gets me. I didn't feel any stares, I had turned that sense off a few months back. I would not disparage my family and say they did a thing wrong at all. No staring, snickering, whispering, no it was all me. I was tired and low on patience and instead of taking my time to do things correctly and make it easier on all of us, I made things worse.

First mistake was taking a boy with five stitches in the bottom of his foot to the waterside. DUH! What on earth did I think he was going to do? When I told him not to get in the water he didn't, but his little foot was still in a puddle of mud in between the pebbles. Had I taken the time to think it through I could have moved him over, fixed a spot to put his foot, gave him a certain amount of time before we had to go. Alas, I didn't do any of these well thought out things. I made a second mistake and told him we were going back to the pavilion and my poor little guy that does not transition well flipped out.

The duty of carrying pressure and weighted vest and having the intuition about when to use which one, figuring out what is sensory and what is bad behavior, these are things I do happily (although not always well) because they are what my kiddo needs, but I would be lying if I said it was anything less than daunting at times. I have come to the realization that the daunting times turn out to be when I am working against myself, like today.

I am tired and having driven 200+ miles round trip to spend an hour and a half with family I have not seen for awhile makes me feel like I could curl up in my computer chair and sleep till morning.

I leave you with a song Hubby likes, it makes him think of Connor and alot of other special kids.

The lyrics "Baby Mine"
By Alison Krauss

Baby mine, don't you cry
Baby mine, Dry your eyes
Rest your head close to my heart
Never to part, baby of mine

Little one, when you play
Don't you mind what they say
Let those eyes sparkle and shine
Never a tear, baby of mine

If they knew sweet little you
They'd end up loving you too
All those same people who scold you
What they'd give just for the
Right to hold you

From your head down to your toes
You're not much, goodness knows
But you're so precious to me
Sweet as can be, baby of mine

Friday, September 14, 2007

T.G.I.F. or not!

Sometimes Fridays are just so darn good. We hadn't done much heavy work but instead concentrated more on floor time, just enjoying being with each other. He behaved so well and even helped me clean up when he spilt an entire box of Trix cereal.

He said the cutest things. Seeing the cookie dough he had gotten on a DVD he ask "What did you do?" It was so cute I couldn't help but laugh. At one point during the day I even heard a happy little bird chirping outside my window.

Time came to get the girls from school and we got in the car waving "Bye-bye Duck" to the lawn ornament in the neighbors yard. The weather was nice and breezy and the sun wasn't shinning too brightly. When we got home I decided it would be nice to get the heavy work out of the way outside. It's Friday so that means Hubby brings dinner home, no preparing meals today!

I gave Connor a spade to dig in dirt and sand. After an hour or so we were both covered in the dirt and sand, so under the pretense of getting something to drink, I lured him back inside. Once inside he is self sufficient in getting his own drink of water. I start to draw his bath and he jumps in almost before I can get his clothes off.

After he is clean and hair washed I set the timer. When it goes off the younger teen takes Connor to finish getting dress while I have my chance to get clean and changed. I had managed to get my shirt off and hear a crash followed by "WAH!!!"

I rush out of the bathroom still only in pants and a bra to see he has managed to slice his foot open while playing chase with his sister. The magnetic board to help organize appointments had a very thin sheet of aluminum that peels right off and is very dangerous to little feet.

He doesn't want to be touched and blood is everywhere. I pick him up and put a pull-up on him getting blood smeared all the way up his leg. It was on my hands, the floor, my chest, and all over him. The youngest girl gets me a tshirt and the oldest gets another pull-up and we put in on his foot. Absorbent and stops blood from getting on anything else. The oldest gets him in the car while the youngest helps me get my keys and cell phone. At this moment I seemed to have trouble remembering anything.

On the way to the immediate car center he is fine saying "Ewww!" when he sees the blood on his toes. In triage his is OK, when the nurse takes off the pull-up to look at his foot he covers his mouth and says "Oh no!"

Once we are called back in the room waiting on a doctor he gets scared. Hubby and I try to calm him but he tries desperately to get under the gurney which has a shelve for oxygen it's covered with dust and just dangerous. After an hour of wrestling with a distraught toddler the doctor finally comes in. He is very nice and ready for a work out. The procedure was over quickly, the pricks to numb and the cleaning being the only things that hurt, and Connor though he was struggling and screaming in the beginning is now asleep.

Connor got 5 stitches and once home was talking and running 90 mph like nothing ever happened. The stitches are to be in for 2 weeks because the cut is across the bottom of his heel, and he is to take an antibiotic because there is noway to keep him off his feet.

Watching him since we got home I don't know how those stitches are going to hold out.

Temple of geeks

The spouse and I had two rare occurrences last night. We got to go out a few hours by ourselves, and we got to be part of a open forum Q&A with Dr. Temple Grandin.

I had no questions for her I just wanted to hear what she had to say. Most of her answers were plain common sense. The sort of answers that make "normal people" stop and say "Well duh! Why didn't I think of that?"

She describes the way she thinks as putting a topic in Google images search engine. She thinks in pictures. She says there are three types of thinking;
"1. Visual thinking - Thinking in Pictures, like mine 2. Music and Math thinking
3. Verbal logic thinking."

Dr. Grandin warns parents to not stomp out the things their children obsess over. Instead she says to use these things to teach. Find books about it to teach them to read. Find clubs for it to help social interactions and use it to teach turn taking. Turn taking she says is key.

On treatments, Dr.Grandin is conservative, she must have at least three families that claim it was successful and they must answer her defense attorney-like questions. So far chelation and Hbot do not meet her standards. Medications, she says must have the "Wow factor" but she says just a tad too much and the person will feel like they drank 10 cups of coffee or worse.

She says to teach kids career skills and start on it at around 10 yrs of age. She describes Google and Microsoft as "Full of Apsies and Auties that were the lucky ones. The ones who had mentors to give them direction. The ones who didn't have their obsession stomped out of them."

Whether she meant to or not, she had us cracking up. The self proclaimed "geek". I loved the twinkle in her eyes when she described friends of hers (most with Aspergers) that were in Silicon Valley.

Dr. Grandin also told us that studies show that some great composers had aspergers, and Dr. Einstein was most likely autistic.

She told a story about being on an airplane in coach and a couple that made out the whole flight. She confesses she does not "get" or understand all that. She likens it to the reaction her autistic friend has to the conversation of server farms. She tilts her head back, eyes closed, and exclaims "Ahhhhh!"

She says she has the emotional status of a 10 year old boy. As example she tells the story of her being on a construction sight where someone kept stealing the lunches. She can barely stop laughing as she tells about the guys putting dog crap on sandwiches and letting the lunch thief steal it.

When asked by families if there child will ever have meaningful relations (I take it she meant marital relations), she has one answer, "I don't know. Maybe if they find someone with the same intense interests. You have to remember your kid is a geek."

So much insightful information I can't possibly remember to get it all down. She talked about sensitivities, colored glasses and paper for visual processing problems, antidepressants, diets, ABA, speech and OT, manners, and potty training.

During the entirety of the session she spoke of her Mother often. The treatments her Mother used and the people she used as a team. I think it's fair to say that her Mother did one hell of a job.

Thursday, September 13, 2007

Brushes trump feet?

The following is a discussion the Spouse and I had just yesterday,

"So how did the boy do in speech today?" He asks.
"He did great, he followed along with the picture schedule and did the picture and sound pictures all the way to O."
"What are the picture and sound pictures?"
"I'm not sure what they are really called, but they go from A to Z and they have two pictures of one thing one them and then the beginning sound of the picture. It would go Apple, Apple, Ah ah ah. Baby, baby, ba, ba, ba." I explain hoping he isn't totally lost now.

"Did he get tired of it or what happened?"
"He didn't know what the picture was."
"What was the picture?"
"Octopus. Guess we've never had a chance to cover that one."
"Everything else go alright?"
"Yea, he zoomed through most of his schedule so he got to go to the gym. He was checking out the assistant, I think he remembered she had open toed shoes last time, then at the gym he saw she had red toenails. He followed her everywhere."
"Oh great! What did she think about that?"
"Well I told her about it last time we went, but she tried to hide them by standing in a ball pit."
"What did he do? Dive to the bottom after them?"
"Well, he tried to yes."

"You know I think maybe we should try the brush. Has to be better than him going after strangers feet." He offers
"Seriously? Are you sure? You know, just because we start brushing doesn't necessarily mean he wont still want toes."
"Well lets try it anyway. We have to try something. The really bothers me when he does that. It's the one thing he does that really make me feel he has anything wrong with him."

I know and understand what he means. He isn't denying that Connor has autism and he isn't ashamed of it. The site of your little one throwing them self on strangers nasty (God only knows where they have been) feet and pressing them to his face makes your heart sink. It's not only the dirt that may be there, but that he does it with no fear, no shame, and no apologies. For him at those moments there is no one attached.

Tuesday, September 11, 2007

Then when and why

About a year ago when we were first started with the early developmental program in our state, we were assigned a SC (service coordinator). Our SC was a go getter, she made sure all ducks were in a row and that Connor got every service he needed. She got more hours if needed. She pulled in dietitians, psychologist, local playgroups, and instructed me on how to get services once he turned 3 and the program ended.

As you could imagine SC, in order to get all the above accomplished, was a tad overbearing. She has a teen aged son that had some form of developmental delay and had been in this field for a long time. The result being if you had been to the moon, she had been there twice. If you knew of a treatment, well she may have helped event it, and how nice that the information of said treatment had got around to the lay folk who were not as educated.

My husband loathed her with his very core. I didn't mind her, she had helped tremendously and she was no worse than hubby's first stepmother, AKA Mother-in-law from hell. Unfortunately this was the person to first bring up Wilbarder's brushing protocol.

For those who do not know about the brushing protocol the information about it and the creator can be found here.

When she introduced the idea to us I knew immediately she was not giving it a glowing endorsement as far as hubby was concerned. She describe it as being a very bothersome thing that had to be done every 2 hours and something that her son still liked. I could see the pictures popping up in his head of a grown boy rubbing himself raw all day, every day and having no interest in anything else.

That is in fact what he is afraid will happen. He believes the males in his family have addictive personalities and he may very well be right as one brother is an alcoholic, another addicted to pain medication, and he himself spends way too much time on computer games.

However I am told by the "experts" that the amount of brushing is decreased until it is no longer used at all and the gains are maintained. I am wrestling with either building up a good defense to go back and plead my case with hubby, or else waiting awhile before trying to introduce it again.

I don't care for the idea of chucking the treatment all together. I don't know that it would be paramount to Connor's development, but as I saw a positive effect and it can't cause him harm, I am inclined to believe it should be tried. To say the least I have conflicting thoughts. I wont do it and hide from hubby, I haven't hid anything from him in our 15+ years.

I guess the question I have to answer is; do you ask someone who has only asked not to try one thing, because of personal believes, to change their minds, when the results are not proven?

Monday, September 10, 2007

Occupational Monday

Our lady of perpetual lateness shows up in the waiting room at 15 minutes past. Things have not escalated much because we showed up at 5 minutes past ourselves, anticipating her being late. I encouraged him to be the official door opener and we put on our "Superman Vest" (pressure vest) hoping that the energy spent combined with the calmness of pressure will make the wait bearable for the both of us.

I mark it a marginal success that I have only had to pull him out of a conference room twice, he has only set the waiting room phone to page once, and the crumpling to the floor has been minimal. I try to tell myself that the receptionist must see kids behave like this all the time, but as I see a young girl with her Grandparents looking at him like he is nuts, I don't find myself very convincing.

When he sees Her Lateness arrive he is ready to go. He grabs her hand and proceeds down the halls. She comments on his energy level seeming different than last week. When we get to the room that she has stuck us in the last few weeks he can't take it. He throws himself to the floor and cries.

It wasn't just your normal meltdown of "No I don't want to". He seemed terrified and almost to a point of hyperventilation. The bottom lip came out as far as it could and his breathing made him sound like he was saying "whooo" and between whoos I hear "Gym".

As fast as it starts it stops. He sees his speech therapist in the room across from this one, stands to his feet, takes a deep breath and says "OK!"

He then walks into the room with his speech therapist, ignoring that she is already with someone. Luckily she and her client were leaving the room and we got to stay there. There was a tent filled with dried beans and rice, and a drum to keep him happy while we go over whats been effective in regards to heavy work for the last 2 weeks.

OT tells him it will only be a few minutes and then we will go to the gym. He happily keeps himself occupied for the next 45 minutes while we go over the week of throwing toys at my head that prompted me to buy the neoprene covered weights. They are more likely to cause a concussion rather than split my head open I explain.

She starts explaining everything she has explained before, same anecdotes, same procedures, and just everything. She even brings up the brushing protocol even though she plainly has it in her charts that hubby is dead set against it. Connor likes the brushing and joint compressions and after she does one of my arms I can see why. I was immediately relaxed while she brushed my arm. It wasn't what I expected really because the bristles all go flat. Then she did the palm of my hand and when finished the tips of my fingers felt like all the nerves were awake and dancing.

Explanations of surgeons doing this before life threatening surgeries and how much concentration they have and calmness they possess get my critical thinking cap on. I don't know how much pressure they apply to this brush while preparing for surgery. I guess they could be tense and holding the brush down with that amount of pressure. I can't picture it being the pivotal thing for surgeon calmness but I do see it has an effect.

I saw the effect it had on Connor so I call hubby I tell him she brought up the brushing again with a persuasive argument for it. He is ticked off. "The one damn thing I tell them I am against and she keeps pushing!"

It ends my pitch that one statement. I decide we wont talk about it for now. He brings it back up in a much more calm tone "What do you think about it?"

I will post on his argument against tomorrow, because believe me it is another post all in itself. For the time being I just say "If you feel that strongly about then I say no." and under my breath I add "For now."

Sunday, September 9, 2007

Daddy and Connor video time

Hubby has recently made it a nightly thing after dinner to put Connor in his lap and look at videos on You Tube. They search for whatever is relevant to what Connor is going on about that day. If he isn't really talking about anything Hubby will search for some of his old childhood favorites like Speed racer, or just whatever comes to mind.

Last night of course it was horses. He pushes the horse into every room with him all the while yelling "Wahoo! Yeehaw! Gitty up!"
So of course Hubby searched for the Lone Ranger. He didn't find much but the opening of the show but this video got a chuckle from Hubby and me.

The night before it was Charlie and Lola. Connor says their names with a perfect English accent, his favorite to say is Charlie. His favorite video however is Lola and her friend Lota singing about a chicken that is the Bestest in the Barn.

Last week we also found out that techno songs were actually lullabies.

I know, I know he is only supposed to be getting his daily allowance of Sesame Street, but Hubby only has a small amount of time between getting home from work, eating diner, and Connor's bedtime. Sometimes allowance have to be made, or at least that's what I tell myself.

Saturday, September 8, 2007

The cleanliness of hobbies

I told her "No! Absolutely not. Thank you for the offer but, no. That thing is dangerous. Springs to pinch fingers, no handle to hold on to and it's been outside for how long now?" I thought she had got the picture, that I had made myself clear, seems I was mistaken.

The day had started out fine, Saturday ritual of fill up the gas tank, take the car through the car wash, and grocery shop for the upcoming week. Somehow things started to go downhill in the dairy section of the store. My cell phone rings, it shows someone is calling from the house. All kids are with me, maybe Hubby came home early from work.

"Hello, Dortha this is Rose." It's is my Mom's neighbor in my house.
"Er...Hi Rose, whats going on?"
"Your Mother wants to know where you are."
" shopping."
"She wants to know where you are grocery shopping."
"Walmart. Why?"
"How long will you be?"
"Until I finish."
"About an hour?"
"About that!"
"We're going yard saleing for a bit and we'll be back." My Mom yells in the background.

I am wandering through the aisles now not sure of what I have put in the cart and what I've passed that I meant to pick up. Why the heck were they in my house with no one there? How did they get in my house? Who does that?

When the girls come to me with shirts they just have to have, I throw them in the cart and decide we need to go. I can't think properly enough to shop just now. When we pull in the drive I see the bleeping thing I told her no about. Maybe he wont notice it, maybe we can swing it around back and get rid of it later, but no he squeaks "HORSE!"

The teens start to carry in the shopping while I try to restrain Connor. He is so happy to see this huge hobby horse. I am less than pleased, it is nasty, dirty beyond belief. I am happy to see the springs have protective covering but I am unsure whether the green stuff on it would be classified as mold, mildew, fungus or algae. The front and back of the frame has things that look like paint roller covers, I guess to stop from scraping the floor when pushed here and there. I think they used to be grey maybe white, now they are camouflage.

He starts to tug and pull on it trying to get it closer and closer to the door. I give in. I lower one half of my back seat and throw the nasty hobby horse in and put Connor in his car seat. We are off for a second visit to the car wash.

He sits in the back of the hatchback while I presoak, wash, and scrub. As I start to rinse and check it over for any missed spots of nastiness he climbs out of the back and drives his new toy motorcycle and helicopter (more toys that were left inside from Grandma) through the bubbles on the concrete. Surprisingly it cleans up well and Connor is eager to get back in the car with his horse.

Once back home he helps pull it out of the car and pulls and pushes it all the way to the front step. I help him get it up the step but the rest is all him.

Horse clean and safe? Check (I think)
Heavy Work? Check

Thursday, September 6, 2007

Perchance to dream

Not quite so long ago I was a very distraught and sleep deprived woman. Seemed that no matter what I did, there was always something new to come along and change his sleeping arrangement.

It first started when he would not sleep for any length of time unless he was in his carrier. So I would buckle him in, sit in on the floor in front of the sofa, and would only be awaken for feedings. When he got too big for the carrier he was scared to be in the crib. We finally got him used to falling asleep in it but not before watching him fall asleep standing up with his head resting on the rail.

The time in the crib was very short lived as he soon started to climb out. This in itself was not too scary it was the fact that a number of times if I had not been in the room with him he would have landed on his head. So we transitioned him into a twin bed and put a gate up at his door so he would not wander through the house at night.

Soon the really strange and unusual would start. Instead of sleeping in his bed he started sleeping under it or in his closet. We had an occupational therapist by this time and she suggested a tent to give him a space to be enclosed by himself. That gave him a third place to sleep, under bed, in closet, or tent. You would think as long as he was sleeping I would let this be, but he was not sleeping well at all. He would not let me lay anything on the floor so after he feel asleep the pools of drool soaked half of his head and he would be awake again crying.

As well as sleeping in weird enclosed spaces he began to scream whenever we would turn his overhead light off, but would also make sure that no light was falling on him what so ever. Nightlights were rejected. I was beginning to think I would never sleep again and as I read stories about other parents in similar situations I was even more afraid.

Sleep deprivation must spur creativity and necessity must truly be the Mother of invention because one morning I just knew what I had to do. I pulled the old bunk bed the girls use to share out of storage and put it up in his room. I placed it in the corner of the room and used shower curtain hangers to hold old red and gold table clothes to close in the remaining exposed side and end of the bed. I removed the ladder and the top bunk serves only as a roof.

I slept well that night, till I heard Thump. He had rolled out of bed and was climbing back in. He has since placed his air mattress sleeping bag on top of his regular mattress and I wedge a pillow under one side to make sure there are no more tumbles. He zips himself in making sure the zipper is up as much as it will go and tells me "Night, night". I even on occasion get voluntary kisses.

I wonder how much longer till we have to make new inventive changes.

Monday, September 3, 2007

Heavy work

I have been faithfully following the every two hour heavy work assignment. It has had it's benefits. The last few days he has actually laid down and has taken a nap. They have been getting progressively shorter in length, but I chalk this up to his endurance building.

Wanting as many activities as possible available for heavy work, I went out and bought 2 medicine balls. He has often picked up my brother in law's bowling balls, so I figured he would play with these and they would be much easier on the foot or toes they landed on.

Well that was my mistake. He found out the straps do not come off, he has deemed them defective.

On the same trip out I bought him a little bicycle and helmet. I realize this exercise would not be the heavy work he needed as his upper body would not be involved, but it prompts him to say three syllable words. "Bicycle!" If I say "Bike" he corrects me "Bicycle!" and I figured he still needs other forms of exercise too.

When I call spouse to tell him about my purchases he informs me that Connor will not be able to ride it immediately because it requires abstract thought. We'll just show him how' I think to myself. I am convinced that I will put him on this bicycle, show him how to put his feet on the peddles and he will just get it, right?

I put him on the it and his feet in place. He sits expectantly and then thrust his body forward waiting for the ride to start. I get on my knees and place my hands over his feet and from behind I peddle his feet for him (I may need to borrow his knee pads). After a bit I get up look at him and say "Now you try."

He moves his feet off the peddles and slants his body just enough to put his big toe on the floor and pushes. OK, this will take more time to learn than I thought.

With his heavy work has come some temper flaring, throwing/swinging of toys, and the need for more deep pressure. I can only assume this is because his endurance is being pushed. The temper and throwing or swinging toys are always when the toy does not "behave properly".

My younger teen sitting in the living room and minding her own business caught a toy telephone in the nose, when he could not get it to do what he wanted. What did he want it to do? I have no idea.

Spouse brought home a John Deere tracker with farm animals, that make animal noises and sings "Old McDonald". Straight out of the box he tried to disconnect the carts carrying the animals. He brought it to me to see if I could get them off. They are just not made to come apart. He throws the animals and the farmer across the room and the tractor soon flies at my head. I collect the tractor and animals to be put away until he can behave. He seeks more ammo, and soon I have two trucks that I narrowly dodge to add to confiscated items.

The needs for deep pressure have changed a bit as he needs more and more lately and I do the best I can with the vest, messages, and joint compressions, but there are just some things a Mom cannot do. Even in his sleep I will see him lie on his tummy, flat as a board,ball his fist up underneath his lower body and all the muscles in his legs and buttocks tighten. When he does this in his awake hours I distract his attention elsewhere.

The OT office is of course closed today for the holiday, so I will have to wait for her to show up late for her appointment next Monday. She has some explaining to do, and the next time she tells a parent to do heavy work with their kids she needs to let them know that it is indeed, hard work.