Friday, August 31, 2007

Script Please

"Hey, what about wout me?" he screams as he runs through the house collecting various toys.

"Awh, Mom did you hear him?" asked my younger teen who has recently become a bleeding heart when it comes to her brother.

"Yes honey I heard him. He isn't really asking anything though." I assume this explains everything and she can get back to her homework.

"What do you mean he isn't asking? I thought you said you heard him."

" I did, but it's echolalia." I explain

"What's that?"

I am shocked. How can I have not explained this to her? How is a sister of a boy with autism going to get by? No wonder she thinks he means everything he says.

"It means he is just repeating a sentence that he has heard, but he hasn't put any meaning behind it."

"How do you know?" She looks at me unconvinced.

"Well, lets work it out together. Does he look like he asking anyone for something?"


"Is he trying to get any ones attention?"


"Has anyone got anything or got to do anything that he hasn't?"


"So why would he be asking 'What about me?' then?"

"Hmmm, I don't know. So where did he hear it?"

"My best guess would be from one of your girls."

We continue our conversation about echolalia and scripting, and soon she is a new expert on the subject. He watches his daily dose of Sesame Street with us and as Elmo says "Guess what Elmo's thinking about today!"
We have seen this episode loads of times and we all know what Elmo is thinking about and turning Connor toward me I say in perfect unison with Elmo, "Dinosaurs Yea!!"

She rolls her eyes and laughs "Script much?"

Thursday, August 30, 2007

Creativity waning

It has been many years since I have painted. Not wanting to poison the house or myself with fumes from oil paints or paint thinners while trying to conceive last time, I put all the expensive paints, brushes, and canvas away. Occasionally I will see one of these fine brushes, when one of the teens "borrow" one and forget to put it back.

I have been feeling the urge lately to paint again but the oils are no safer now then they were then and I don't care for the idea of finger prints on the canvas or different colored ones throughout the house that wont come off or dry for several days. Then there is the fact that I have no idea what I would paint. So I take one of my expensive paint brushes out of storage and decoupage hundreds of little tractors in a border around Connor's room. A more noble task.

I also have a great urge to write. I enjoy writing about the everyday challenges and rewards of life with my little man, but I would like to write about other things as well. Memoirs are hard for me and bring out ugliness in my attitude, so I only do that sparingly. This house (like all houses) runs better with a happy Mom.

To say the least my mind has been in a constant whirlwind of ideas. I try to rope one in and go with it, problem is ideas don't stop coming or the idea I have lassoed is too messy, time consuming, or just not possible at the moment. In order to at least do something constructive with all this buzzing energy and creativity, I decide to make him a weighted pet. My first idea is a sock elephant filled with rice. I go to the store and buy 10 lbs because I know the younger teen will complain the she wants to eat some.

I have a pair of tubes socks in hand and look up a pattern on the Internet. I find a cute one and start to work but have to stop several times so clean up rice, do an errand or two, or let the little shaking whimpering dog out that has a bladder the size of a chick pea. Things aren't going well, he wants to be involved but I can't fathom how to include him with needles and scissors. I put it away and try to remember what stuffed animals I have stored away in the basement when the girls decided they were too old for them.

I dash downstairs and grab the first one I see. A large Pound Puppy. He loves it so I immediately start the surgery, turning the Pound Puppy into a four pounder. In the car with the puppy on his lap his is very contented and there is no playing with locks or doorhandles. At home after dinner Hubby and the girls find the puppy very comfortable to have sitting on their shoulders, laps, and chest.

Connor seeing all the interest in his puppy decides he has to have it back NOW! He sits down placing it on his lap and falls quickly asleep at a quarter till 7 pm, not getting back up till 7:30 this morning. Guess I got a little carried away with the weight.

Hmmm, maybe if I put it on top of my head...

Tuesday, August 28, 2007

And then there were five.

After disrupting our schedule to go through the attic for long lost DVDs, and to carry awkward or heavy objects to her truck, my Mother ended her over extended stay with us. She made her trek back to her own house after being with us for 10 months.

If not for worrying that her grandson will miss her immensely, I would be downright cheerful. One less person to clean up after and take menu orders from. No squeaky hearing aids and constant chatter before I reach the bottom of my first cup of coffee in the morning. One less female to compete with for the bathroom at any given moment.

The interruptions really bothered me as they seemed to come at moments when I would start hard work sessions, the "Teach me to talk" program on the computer, or floor time. I knew for sure that today would be a wasted effort. His sensory needs wouldn't be met and he would run rampant through the house once again today, bouncing from one thing to the other, trying to keep himself at high arousal.

I gave in to giving him a couple pieces of sour chewy candy to at least get some work for his jaw muscles and feed the sensory needs of his mouth. Spouse had the same idea after hearing my woes of the day and brought home a small bag of jalapeno Cheetos. The result was of course he ate no dinner, he picked at a few raw carrots until deciding throwing them at his sisters was a better idea.

After dinner was over he sat in my lap and touched the screen on the objects I asked him to show me. He is rewarded with music and moving pictures and a man's voice saying the name of the object. The temptation to keep hitting "horse", his favorite animal, or "Book" that has a great classical piece that plays, is great, but he stays with my request as I say, "Alright!" and "Good Job!". After 15 minutes I let him touch whichever picture he wants. He touches horse, book, and telephone over and over for a bit and then tells me "No." when he wants another group of pictures to choose from. He stayed in my lap for over a half hour and I was granted kisses and hugs.

He let me read a book to him at bed time for the first time in months, though I think 'Mr. Brown can Moo. Can You?' may have been a bit of an instigator. Instead of climbing into his bed he stays awake making every noise in the book over and over and over followed by "The End!" every so often. My thoughts wander back to my Mom and what she would say about all the racket coming from his room.

"Oh would you listen to that! To think not that long ago we didn't know if he would ever talk!" She does have an annoying habit of keeping the little things in perspective sometimes.


On a side note, a funny thing happened this weekend and my husband just doesn't get why it was so funny. So if you would to take the time, let me know which of us has the challenged sense of humor.

My Mom went to the Bingo with my Grandma. Mom wins the first game and gets around $25. She then goes on to win the next game and wins a very considerable amount more. Realizing she had the money to now make her house fully livable, she stands up, shaking her fist over her head and yells, "I going home! I'm going home!".

My Grandma looks at her, pulls her back into her seat, starts patting Mom's knee and says, "Now TeeTee calm down. We can't go home yet. We gotta finish playing Bingo!"

Monday, August 27, 2007

Occupational Monday

Last week I was assigned the task of giving the little guy hard work sessions every two hours and report back to the therapist what effects this had. My husband began to laugh at me as the week wore on. "What hard work are you going to pull him from to do your hard work?"

Sadly that seemed to be the case. He would be jumping on his trampoline or my bed and I would pull him away to play with cars on all fours, using one arm to bare his weight. When he was climbing cabinets and furniture, I would come to move him to the task of playing with wet sand. I would stop his running from one end of the house to the other and have him push or pull laundry baskets.

Some times I could see more contentment, most times I just saw fuel added to the fire. He would finish one heavy work task just to begin one on his own.

Today when the appointment time came creeping up I made sure to be there only 5 minutes till. The therapist was still 15 minutes late coming out so insanity ensued. Most of the twenty minutes in the waiting room was spent with Connor trying to run through the building, not wanting to comply with instructions. I was getting tired of my own voice as he lay on the floor (his tactic to not be moved or have to hold my hand) and I would say "OK, I am going to help you up. One, two, three."

When she comes out he is happy to take her hand and go with her, until he finds out we are going to the same room as last week and not to the gym. We have to force him in and as she sits in front of the door barring escape, he flies in to a meltdown taking the pop-up tent with him. He is usually one to recover from his meltdowns quickly but this one lasts awhile. The therapist goes to get weighted balls and a weighted blanket.

He has managed to enclosed himself inside the pop-up tent that he has collapsed. Throwing the weighted blanket over him she assumes he is wiped. I assure her he is only getting his second wind and will attend to the toys she brought in momentarily. He isn't one to get wiped out by a meltdown but to either recover and do the task at hand or to be fueled by it.

He doesn't make a liar out of me. He gets up and starts to play with the medicine balls and chew on the handle of the rideable bouncy ball. Not being the center of my attention at the moment he decides to let me in on the fun and throws the 5 - 7lbs balls at me as I review the week with his therapist. I play with him as we talk and let him climb on me and encourage him to carry the balls as we talk.

I let her know that the results were varied which I didn't expect after being very faithful to the every two hours. I also let her in on my husbands joke that our little guy is always doing hard work. We go over the week and the results and as we do I clue in to the problem as quickly as she does. The times his hard work only involved his legs or short movements he was stimulated by it, when he was using his upper body to push, pull, or lift he got the desired effect of the hard work and was more content and attentive.

As we rejoice in our new found discovery, Connor lies down behind me and reaching up my shirt starts to rub the small of my back. This boy that has not taken a nap in so very long was shortly snoring behind me with the occasional twitch of the leg or foot.

"He doesn't have much endurance. As we continue the hard work that will get better." She explains.
"If I hadn't just seen that I would have questioned you about the endurance." I guess she knows a little bit about this occupational stuff after all.

Sunday, August 26, 2007

Out of sorts. Part II

While we walk to the picnic table to deposit all of our supplies, Connor is a model citizen. That soon changes however when he sees that the table cloth and the cake have fire engines on them. He is directed to some sand a few yards away and a disaster is avoided. My girls are resuming their posts of second and third Mothers to make sure their brother is occupied. I think it is partly because they still want to play a little, and the idea of sitting and talking with the elders is less than attractive.

The birthday boy is very small for his age. I had seen him before when my cousin was new to being a mother. She had been worried then because being in a family that has always packed a few extra pounds, a breast bone that protruded the way his did, had never been seen. He has her eyes, big warm brown eyes. On this little person they melt you.

In no time I start to take notice of a few troubling things. He has no words and barely babbles. When he is offered the whole cake, he doesn't dive in but after getting icing on his finger pays more attention to it than the cake. I think to myself that maybe having an autistic child I am reading too much in to this, and I have no idea what he does at home. He doesn't walk yet, he doesn't make any attempts to cruise, he is much happier being carried. We call his name over and over again, most times we do not get a response.

Thinking about the call I received from her about a month ago, I start to feel like an ass. She had asked so many questions about Connor's autism. What made us get him tested? What was it about him that made him autistic? So many questions that I was glad someone would ask instead of assuming, but the depths of the questions made me feel she was trying to find out if she wanted to even invite us to her son's party.

I see she is getting tense and while they try to get his attention for a picture she tries to catch my eye. I give her my best "great party, thank for inviting us" smile. She does finally corner me however and asks me what I think. All I can tell her is I am not a professional, it took me till almost 3yrs of age to find out what was going on with my own son. I advise her to talk to her doctor about problems she is concerned with and warn her that at this stage of development they may not do anymore than say "All children develop differently and at different ages."

I then tell her about the early development program that Connor was in, that they may evaluate to see if he qualifies for any services. I also assure her that he just turned 1 it may be too early, next month he may get up and walk across the room. He may get his first word and second word, etc. and she will remember when he use to be so quiet.

I then have to answer my cell phone it is that boy again. "Hello."
"Hello?" he answers
"Hello." I say again and deciding I must have a bad connection I hang up.

As I put my phone back in my pocket I see Connor has left his Grandma in the dust and she is having the worst response possible.

"Connor! You get back here!" She squawks. He turns to look at her, now thinking this is a great chasing game he speeds up. I start into a sprint, he is so far away from me that the possibility of him getting to the road before I get to him is very real. I don't believe I have ever ran so fast, even as a teenager, I know my legs had never given me the speed they granted me at that moment. My heart also blesses me, as I don't think it bother to beat until I had reached Connor and with shear speed, knocked him to the ground.

Words tumble out of my mouth that I had no control over "road bad" "hurt" "cars". My brain isn't working through the problem as fast as the rest of my body is and I curse myself for not knowing the correct things to say to him. The magical words I need to make him understand that if he goes into the road that he could get hurt, ran over by a car, do not come into my vocabulary. As my heart resumes beating and trying to escape my chest, Connor is mad that he got scolded and decides I am the wrong doer here. He tries to smack at me, I hold his little hands and hang my head in defeat. Mom comes over quietly and takes one of his hands and together we lead him back to the party.

The feelings I had sensed earlier in my cousin were the same I felt at that moment; concern, fear, exhaustion, uncertainty, and appreciation for a little understanding and a helping hand.

Saturday, August 25, 2007

Out of sorts

I am in a mood that I hate to be in. One where my temper is short and I am feeling sorry for myself. I try to cover up for the kids so I won't drag them down into the mire with me. It has been an eventful day and I am tired and wiped out, physically and emotionally.

I had intended to take the kids to the state fair in the early hours of the morning to avoid the crowds and the heat. My main purpose for this was to show Connor the farm animals and perhaps let him get a peek at the horse show. The horse is his favorite animal right now. After the trip to the fair we were to go to the store and pick up a gift bag and go to the park for my cousin's son's first birthday party. A quick stop at the grocery afterward, because there was not much food in the house other than 10 boxes of cereal.

We woke up too late for the trip to the fair, which was a treat in itself to be able to sleep in that late. I was a little disappointed but glad that I hadn't let the kids in on the plan. I start waking sleepy heads up and herding them to the kitchen for breakfast. No one seems able (willing) to get there own bowl and spoon. When breakfast is over I have myself dressed and ready, Mom is on the computer playing games but is ready and staying out of the way. I get Connor ready, pack up a few needed items and start sorting through the PCS cards to find Car, Store, Shop, Park, Water, Fun, and Cake. I can't find cards for fountain, or party so I make due.

My teens are taking showers, one downstairs and one upstairs and I can hear the moaning and complaining about the lack of hot water. Then I catch the oldest one on the phone with the boy she likes, talking about going to the movies. "We have to be at the park by noon get moving." I say with a little more annoyance than I mean to.
"Gee, you don't have to yell at me!"
"Honey I didn't yell and I don't mean to be snippy. You can stay on the phone if you have to, but MOVE. We don't have much time left."

She goes down the hall, phone still stuck to her ear saying things like "What do you mean don't yell at her? I didn't, did I?"

The amount of time she spends on the phone with this boy is a constant thorn in my side these days, but today they seem to make it just a bit more so. Twenty minutes later we are at a stop light and my cell phone rings. I answer since I am at a red light. "I'm sorry, are you busy?"
"Well I will be in a second when the light turns green. Who is this?"
"Um, can I speak to Melody?"
Words fail me and I toss the cell phone in the back seat to my daughter. Didn't they just talk? What can be so important that he has to call my cell? How did he get my cell phone number?

The store is crowded when we get there and the horse ride doesn't work. The girls try to move it like it was working and it works good enough so that Connor allows us to put him the cart. I lose my Mom and my daughters almost immediately as there is a 50% off of clearance apparel. I grab the gift bag and head over to get more pull-ups. On the way over he sees a toy firetruck that I had failed to see and avoid. It is snatched from the shelf and he pushes buttons making it sound like a fire engine had just came in the front of the store.

I find the rest of my party laden with bargains and Connor will not release his newly found treasure. So filling my trunk with more than I had planned to we head off to the park. The siren on this toy sounds so real that I am looking in my rear and side view mirrors almost constantly.

My Grandma, Aunt, Uncle, and cousins are there and I am a tad nervous about seeing them. I haven't bothered to make much time for them since last years Christmas party. The looks and whispers were too much for my whole household. This was before he got a diagnosis and some of these people thought he was just "Bad".

As we walked up to the rest of the family I got the strangest feeling. My cousin was walking toward us and as we got closer this feeling grew. I can not begin to tell you what this feeling was it had bits of alot of different feelings, but I knew what was going to happen before my cousin wrapped her arms around my Mom. As they hugged I saw her shake and the tears falling from her eyes and I almost wanted to cry too, but I had no idea why. I thought we must be sharing a mass insane moment. All she could say was "Thank you so much for coming."

After I am there for awhile and I observe a few things I think I understand what she was feeling and why I understood without really knowing.

To be continued....

Friday, August 24, 2007

The first cake was done and carefully managed to place each tier on the cake plate with layers of frosting between. It's a square cake as I couldn't find my round pans. They are probably outside in the sandbox, behind the garage filled with dirt, or else I hid them from myself cleaning out my cabinets a few months back. The cake is also chocolate. I managed to finish the decorating by myself and placed it high up on the water cooler, where I thought it would go unnoticed and left alone.

Having accomplished this feet I decide to make lunch in the microwave and as always the circuit blows. Not that big of a deal I will just trip the breaker and grab my sheets out of the dryer while I am in the basement. I run down the stairs as quickly as possible trying not to break my neck on the clothes left to be sorted and laundered. I step on a car on the way down, a new addition to the others that have ceased to work properly and are therefore thrown over the baby gate into the abyss.

I go in the furnace room and flip the light switch and wait for the flicker from the fluorescence. I flick the bulbs and hope that will hurry it up, it doesn't. I feel around in the dark for the panel and find the fuse hoping I don't electrify myself. The light decides it is up to the challenge at last and gives me light, I hit the fuse and turn the light back off. I head over to the laundry room and I can feel precious minutes have passed. He hasn't noticed I am downstairs yet at which point he would cry, scream, and do all he could to try to get over the gate. The fact he hasn't noticed my absence worries me too. What is he doing? How dangerous is it? What kind of mess am I gonna have to clean up?

As I am coming back up the stairs with my fresh clean sheets I can hear him singing. "Happy erfday to youey, Happy erfday to youey." He then makes big inhale and blowing noises.
At the top of the stairs I turn in the kitchen and see him standing in a chair, serenading and blowing at the cake. There are little finger marks all over it and chocolate covers his face. I move the cake to the fridge, wipe his face, and then make my way down the hall to deposit the sheets onto the bed and I hear "Happy erfday!" He has found it. I get to the kitchen before he has moved the cake from it's shelf and sit it on the entertainment center in the living room.
He climbs on to the highest piece of furniture and sings "Happy erfday to you!" his hips swaying back and forth to the tune.
"Are you going to sing Happy Birthday to Daddy?" I ask him as I hold on to his waist to stop him from falling.
He sings it a few more times then pretends to blow out the candles. He doesn't aim toward the cake this time but at me and my face is showered in spit.

Daddy did get to hear a little bit of "Happy erfday to you." but we had to restrain him from running when others joined in. He didn't cry this time and we sang fast to finish the song. He and his Daddy blew out the candles together.

We have another birthday party tomorrow at a park with a big water fountain that kids can play in. The party is for my cousin's son. Should be interesting.

Thursday, August 23, 2007

White or chocolate?

Birthdays have had a negative effect for us for the last two years. No it isn't because I am getting older and gravity is having it's way with parts of my body that I swear use to be higher, not to mention firmer. It's because every time we start to sing the Birthday song, Connor looks around liked a spooked horse and flies out of the room crying. To his credit we may not be the best singers, but I really don't think we are quite that bad.

It doesn't help that everyone seems to have their birthdays all around the same time. August is really bad, husband, youngest teen, Grandma, cousin, my cousin's son, etc, all in the same week. Since tomorrow starts off the week of birthdays starting with my husband, we went to the local supermarket to get cake mix and icing.

I hadn't noticed how stores seems to have pictures really high up showing what they sell in that particular department. Connor lets me in on what I have overlooked, "Cheese" and sure enough there is the cheese section.
"1, 2, 3, 4, 5, 6, 7, 8, 9, 10" as we go down each numbered aisle.

"Happy erfday to youey" I stop and stare at him as do my daughters. He sings it a few more times and I see the picture above the bakery of two halves of cake. One is white with sprinkles the other is chocolate.

Elmo on Sesame Street (the only thing he gets to watch lately) mentions a birthday cake everyday, sometimes having kids sing a few lines. So it may be echolalic and the picture of cake setting it off. So maybe if tomorrow night he sees the cake maybe the spouse will have a few lines of "Happy erfday to youey." sung to him that would be an awesome birthday gift.

My husband is a chocolate lover so I got him the dark chocolate fudge cake mix and icing, and as I start to head out of the store my eyes start to get a little misty. I don't know if one cake set that off or not. What if it is the white one with sprinkles and the chocolate cake doesn't qualify for "Happy erfday to youey"?

So yes, as you may have guessed tomorrow we will be having two cakes, one white with sprinkles and one chocolate. I just hope I don't have to cut them in half before I get the desired result.

Tuesday, August 21, 2007

Hey, where are you?

In June of last year, my husband and I loaded up the children and headed to Nolin Lake. We were to meet my Dad, Stepmom, Stepbrother, Stepsister, and their families for a camping trip. They live in the area, but for us it is an hour and a half trip each way. We left early in the morning so we could spend a good part of the day with them, because we would not be staying over night. Connor had just turned 2 a few weeks before and his behavior and communication abilities were, to put it mildly, straining.

The campsite was in a patch of tall pine trees and just where the trees thinned out was a man-made beach, so the ground around the tents was covered in sand and dry pine needles with little patches of grass. Connor must have thought it was heaven. He would run around grabbing handfuls of needles and sand, to either throw it, put it in his mouth, or sit and poke at it with sticks he collected. He would run into other campsites and almost straight through camp fires.

My husband and I were both on high alert, but trying to stay calm in order to reap a little enjoyment from visiting with family. My Dad was glad to hang out with me while the rest went swimming, not being one to show off his sexy white legs (more comfortable in blue jeans). He would try to engage Connor in play but was being totally ignored. "Hey, Connor." No response. "Connor." Still nothing.
"Dortha, can he hear?" He was concerned about Connor, but I could tell a little afraid to meddle at the same time.
"I think so Dad, because he can hear Elmo all the way from the kitchen. We have a test to find out coming up soon." I shrugged and gave him a smile, letting him know that all his questions and concerns were more than welcomed.

Every time he has called or we have visited together since he will ask "So hows Connor doing?" and I immediately fill him in on any and all developments since the last time we talked, like him asking that small question has opened a flood gate. If he doesn't have a lot of time he will simply ask "How are the kids?" to which I reply which a much more simplified answer.

This past Friday he called to say he was in town having come along with my Stepmom, who had a class in adult education for her job. He was on his way to see me and Connor (the girls were in school) and would be here shortly. The house was a wreck as usual and I zoomed through as quickly as possible making everything look "good enough".

He arrived even sooner than I could have imagined. I have always been a "Daddy's little girl" and when I see him I can't help but smile. He always wears the same type shirt, button up with sleeves that come just above the elbow and a front pocket, along with the same type of jeans or dress pants if it's Sunday. The cologne he wears is one I would recognize anywhere and I love the smell of it, it smells like Dad.

When he comes in Connor doesn't greet him at the door with me and so we hunt to find which bedroom he has ran off to. He is in my room jumping on my bed and when he sees his Grandpa just lays down and looks at him. Dad tries to make conversation with him and I guess was asking questions that my niece, born just a couple of hours after Connor, would have been able to answer. I can tell he doesn't know what to do or how to act around his Grandson so I ask if he would like to have a cup of coffee. We sit in the kitchen and drink coffee and talk.

We soon hear this shrill little voice from down the hall "Hey, where are you!"
Dad's eyes bulge out at me as he is sure it couldn't be the same little boy he just tried to talk to.
"Hey, where are you!"
"I'm in the kitchen. Where are you?" Dad booms back.
A little heads peeks around the refrigerator at us and when he makes eye contact with his Grandpa he has a fit of the giggles and runs back down the hall. Connor repeats this game a few times and before we know it time has come for Dad to leave. We go back down the hall to tell Connor "Grandpa has to go bye bye."
Connor walks over to him and pulls on his hand until he bends down and then hugs him. Then he grabs his hand and walks him to the door.

"Wow I feel honored Connor, you've never given me a hug before." By the sound of his voice he was a little emotional too.

Monday, August 20, 2007

The four F's

Have you ever thrown one of those small rubbery bouncy balls in a very small room? Did it bounce every which way zinging in every direction, bouncing off walls, floor, ceiling, and everything else in the room? If you gave that little ball some stamina to keep it going, it would be very much like my son. He even has a habit of making his own sound effects as he "ZOOM"s, "EERRRRR"s, and sometimes "Bam"s or "Kaboom"s through the house. With this he has a love of all things powdery or sand like; coffee creamer, sugar, salt, instant potatoes, ground coffee, etc. He likes to spray his face and chest with spray bottles full of water. He loves creamy textures like lotions or butter and will cover himself and everything around him. Also we have pica, he likes to put things in his mouth (most times eating them) that are not food items; sand, dirt, styrofoam, and chunks of nerftype balls. Armed with this information I went in to the OT's meeting today sure that she was going to tell me he is sensory seeking.

We arrived (quite by mistake) 20 minutes early. He isn't able to sit still very long and has already seen two lovely ladies with perfectly pedicured toes in flip flops. He dives under a chair and slowly inches his way under the chairs and tables lined up in the waiting room. I try to lure him out with his Thomas train, but it's no good. I explain to the lady before he gets to her area that he really likes feet, so when he does reach out from under her chair and grabs her ankle she isn't alarmed. She gets up and helps me move her chair so I am able to grab him. He makes a show of being an airplane zooming around a center post in the room, then counting, and a recital of ABC's, all in courtship of this lady, all in hopes she may consent to let him touch her toes. It was really quite shameless.

I look at the clock and see it is now time for the appointment and start to feel some relief that soon he will be occupied and not doing such a great impression of a ping-pong ball. I see other therapist bring children out of their sessions and the lady whom my son had such admiration for soon leaves with her child. To my aggravation the therapist has not made her appearance yet at five after and more people come in. One of the new people is an attractive woman wearing open toed heals and to my horror I see her toenails are painted red, his favorite. Oh for the love of God!

All he had to do was turn toward her and I saw his little blue eyes get wide. He had almost got a full lunge toward her when I grabbed him, "No, no, no." He recovers quickly and shoots like a bullet down a hall and into a conference room shutting the door on me. I pull him out and keep him on my hip the best I can checking the time, it is now fifteen after, and finally there she is. She sees I am sweating and looking perturbed and quickly gets us in a room where we can go over what the questionnaire tests show.

She first takes us to a conference room and Connor starts climbing, playing with the phone, and then finds the unlocked cabinet with spray cleaners. She sees her folly and decides she knows a much better room. She takes us through a maze of halls to a very small room that has a little pop up tent, three mats and a swing hanging form the ceiling that looks like a punching bag, the wall with the door is a huge window looking out into the hall.

The test show Sensory sensitive. Huh? She starts on a quick spill about how sometimes these are wrong and we needed to start a sensory diet, we would start with "Heavy Work Activities" every two hours. I will report to her next week how this went and how he reacts and performs. The goal is to find out if he is sensitive to stimuli (distracted to the newest stimuli to present itself) or sensation seeking (trying to add stimuli to all activities). She continues with telling me how the senses work and the different levels of arousal. At one point I think I wrapped my mind around the subject and offer "Flight or fight?"
"Yeah! But there are four really; fright, flight, fight, and reproduce. The four F's." she chuckles.

My brow furrows for a moment, surely she know "reproduce" starts with a R, then her meaning finally comes to mind. I am reminded of a quote from a wise person in my life, my youngest teen, who says "He who laughs last, thinks slowest."

Sunday, August 19, 2007


During the fall of last year we had started in the program ran by the state to help children under the age of 3 that had disabilities, or problems with speech, and I don't know what else. I was working at the time as a manager of a restaurant during the day and Connor was enrolled at a daycare/preschool close to the house. He was not verbal at all at the point except for a few numbers and a lot of babbling. Shortly after enrolling he started counting higher and would use his fingers to count, but there were problems.

He had only been there a month and the director was less than pleased with how he was fitting in. He didn't talk (which I told them before enrolling), he had to hold something in his hand at most times and they didn't feel this was fair because the other kids weren't allowed to do that. He wouldn't even try to go to the restroom when the other kids were well on there way to being potty trained. Then questions from all the staff.
"Does he ever say anything?"
"Does he crumble up food and throw it on the floor at home?"
"Why wont he respond when we call him?"
"Why wont he sit during circle time?"
"Why will he not play with the other children?"

The director then told me she was willing to work with me, but we might need to look for other placement. Maybe I need to look at a daycare for "Special needs" and they couldn't move him to the 3 year old room if not potty trained.

My schedule at work was that sometimes I would be off at five, sometimes at two. On the days I would get off at five, Connor would be sitting in someones lap or under their chair. When I would come in he would smile at me and say "Hi!" I started to think that maybe things were turning around. Then the days I would get off at two I would come in and sneak a look in the classroom before making my presence known. Every single time he would be away from the rest laying on the floor running a car back and forth, back and forth. Sometimes I wouldn't be able to see him because he was laying to close to the door or under a table.

He had an OT and Speech therapist coming in every week, they had concerns as well. The classroom wasn't able to facilitate a hiding place for him when things got to be too much. The daycare staff was not consistent with him. Some days they would let him go to the tunnel in the playground that was on the bigger kids' side. Some days he wouldn't be allowed to. The therapists told me they felt the staff had given up on him and decided to let him do what he wanted as long as he didn't hurt himself or anyone else.

I can't tell you how much that hurt my heart. I knew there was a very bright little boy in there somewhere. A little boy that loved to snuggle and give kisses. It hurt that these people that had me convinced that they gave a fig about my boy had just given up and taken the easy way out.

Then one Monday in December I picked Connor up and that night during his bath I saw not one, not two, but three bite marks on his back. They were not just little teeth marks, but rather like the vampire who bite him had tried to suck him dry. They were purplish like blood blisters and no one had bothered to tell me anything. The next morning I confronted the "teacher" of the room. She told me Connor had taken a toy away from another child and then ran from the kid, and that when anything like that happened there was an accident report put on the wall. She then showed me where.

I had never been told about this paper before or showed where it was. I read the report (that was very small on a graph) stating nothing short of Connor being the instigator of a riot and had tried to wrestle with another child. WHAT?! So much for peer interaction. I grabbed Connor and his belongings and we left. I am sure much to their relief. I then called my employer told them something along the lines of, I had no childcare and they needed to find my replacement.

We got his diagnosis for autism on January 4th of this year and that made me even more furious with the people at the daycare. I feel sorry for the next family, and I am sure there will be another because of the increase of autism these days. I hope they have their diagnosis before hand and then they wont be allowed to give this family as much trouble as they gave me.

We pass the daycare fairly often these days, and what use to be a cause of tantrums for Connor seem to be all but forgotten. If only I was as mature. No matter what time of day or night, no matter who might be out front, I always have to give my one finger salute. One day I may grow up and be a good role model for my children. I hope it's soon.

Saturday, August 18, 2007

Planning for the future

I find myself being asked by various family members and some asking more than once "Do you think he will ever be able to live on his own."

I try to keep positive, a determined thought "Of course he will!" but I keep things honest and reply "I have no idea." and because that is the truth of it at this point in time I have been stashing what money I can away to build a nest egg. Immortality seems a must for my husband and me as I worry about putting the burden of their brother on my girls, and total strangers taking care of my boy...well let's just say that thought more than troubles me.

In an attempt to sock more money away, when the insurance check came to pay for my van I bought the cheapest car I could find. It has air, power locks and windows. I doesn't look bad inside or out, and my Father-in-law assures me it is a sound vehicle. The teens aren't even embarrassed to be seen in it.

It was not long however that I found a huge overwhelming flaw in my plan. Power locks.

I start the car put it in reverse and all four doors lock with a loud click. I drive to the middle school to pick up the younger teen. I see her coming and use the switch beside me to unlock the doors to allow her entrance. Once she is inside I use the switch again and "click" I hear the locks but they don't sound as definite as they did. She tries her door and I mine, they are locked, all must be fine. On our way to the high school to pick up the oldest teen, the younger yells "Connor NO!"

I pull over and see that his motor skills are improving as he was able to grab the handle of the door nearest him and pull. The door has not opened all the way but I can see light between the door and the door jam. He is upset that he had been scolded and is trying to hide himself in plain sight. I go to open my door as the youngest soothes the boy and tells him he'll fall out and get hurt if he opens the door, a message I'm not sure he is receiving. My door does not open, I hit the switch again, it still does not open. GAH!!

She tries her switch and I am free to exit and go to his door to make sure it is shut. The younger hits all the switches in an attempt to lock his door and none work. I turn off the engine and start it again. Not shutting my door, I put the car in drive, hear all the locks hit and put it back in park. I run around to his door and pull. It is locked, success at last! We take off to pick up the oldest teen and she is dumbfounded to see her Mother shut off the car just to start it again, put it in gear then back in park, run around to pull on the door by her brother, then come back around.
"What are you doing?"
I explain the problem with the locks.
"So what do we do when he discovers all he has to do is push the switch?" She asks.

Oh damn, haven't thought of that! I guess the bit I socked away is going to have to pay for a safer car, unless I come up with another ingenius solution. Yeah, ingenius ideas have not been my strong point as of late.

"Girls I think we need to have a talk about the future."

Friday, August 17, 2007


It's mid morning and Connor and I have chores to do. I have to fill the car up with gas and run to the grocery again. The gas station is at one end of the neighborhood and my preferred store is at the other forcing me to cut back through. This always causes a bit of a screaming session as he knows his way home from there. I get in the turning lane waiting on the light and a look in the rear view mirror tells me that he is getting ready to protest. He is looking around frantic. His mean Mother is going back home already! What about the store?

I have a moment of what I think is genius and decide since there is no traffic I will go to the next light and throw him off a little, screams and panic averted. I pull into the next light's turning lane and as we turn he starts to panic. This path has not gone completely past the putt-putt with the statues of elephants, giraffes, and zebras, but just barely put it within eyesight. I have not slowed down to talk about them and let him look or made any animals noises with him. This is not acceptable and will not be tolerated!

The tantrum is short lived and by the time we reach the grocery store he is perfectly fine. He holds my hand going in but releases it once we are in the first set of doors. The very wise people of this store put the gum ball and other candy machines at the doors as you enter instead the exit doors. I would think it should be the other way around allowing a parent to have a little foresight and gather change as they purchase their items. Knowing that this is how it is and little guy haven gotten into the routine I have my change purse filled with quarters. He stands in front of the one he wants and points "Ball"
"Honey, what is that?" I ask him because he is pointing at gum balls.
"Candy!" he says while making the sign.
He gets his earned treat and we do our shopping.

"Baby, Baby, Baby." I look to see where the baby is and see instead a little boy that looks to be a tad older than him. Connor is pointing at him and chanting "Baby"
This is something we have been trying to work on so I say "Boy" hoping that in getting him to stop calling children his own age babies, I might also get the added benefit of teaching him "Boy, Girl."

No matter how many times I say "Boy" I am answered back with "Baby" Afraid that we might hurt the little boy's feeling who is probably convinced he is a "Big boy" not a baby, I move on. We spend sometime in the pet department because he can see the sign from miles away.
"Wader" he points at the tanks.
"Whats in the water?"
We move on to the hamsters "Squeak, squeak, squeak!"
Moving farther we come up on some Guinea pigs "Doggie! Ruff ruff!"
"Guinea pig."
"Doggie! Ruff Ruff!"
"No baby, Guinea pig" Oh damn, no wonder he calls kids his age babies.

I leave the pet department and check out as we make our way out he sees a soccer ball shaped balloon.
"Good job, big boy!" Well what would you say?

Wednesday, August 15, 2007

Oh well!

Before the summer was over the girls and I decided we needed to get out of the house and do something. Something other than going to the zoo or park. So we decided on a small road trip, to go out of town and eat lunch at a restaurant we have never been to before.

We packed up a small amount of supplies; snacks, diapers, and wipes for the boy. Ipods, magazines, and bottled water for them. Off we went and we really enjoyed ourselves. Unfortunately as we were turning into the parking lot of the restaurant we had decided looked good, Connor had started to nod off. He is of course grumpy as we wake him up and as I take him into the restaurant he starts to scream and kick. I leave my girls to find us a good spot while I take Connor to the restroom in hopes he will calm down. He lays crumpled in the floor now that all appendages have turned to jelly. I sit near him but do not touch him, if I touch him he kicks or throws an arm at me. A little girls walks out of the stall and stares at us as if she had come across a murder scene. She barely washes and dries her hands before darting out, all the while making a noise "Oooohhhhmmmm!"

He has decided he is suddenly happy to be there and is OK with leaving the bathroom. He takes my hand and we walk toward my daughters. We walk hand in hand and he is taking everything in and I actually see a smile on his face. His hand then starts to slip out of mine and his little body is starting a slow descent toward the floor as he sees his sisters and where they expect us to sit.

He is fine with sunlight when he is outside, but sunlight streaming in from a window is not tolerated. A table in the corner of a room that has a window on each wall where the rest of the room is relatively dim is absolute torture. There are no other tables available so I try to put him in a seat with his back towards the largest window hoping this will suffice. As I suspect the placement doesn't make it any better and he places himself where he finds it most comfortable for all senses, under the table lying on his stomach with his head as close as possible to our feet.

I reason with myself that if left alone he may calm down enough to adjust to his surrounds and that a pleasant lunch isn't totally out of the question. The waitress comes to the table to take our drink orders, she is much older and seems to very be concerned about the situation. She tries to talk to him like she would any other child his age. "Honey, you don't wanna lay down there. That floor is dirty, you'll getcha clothes all messed up"

"He is autistic, it may be awhile before we get him up off the floor." I tell her, hoping it will encourage her to go ahead with the drink order.

Still looking down at him like she expected him to react, she says in a very pleasant southern singsong voice, "Well........Oh well!" and leaves us to get our drinks.

I look at my oldest daughter and see she is red in the face and stopping herself from laughing. I chuckle a little and ask "She has no idea what the heck I'm talking about does she?"
"Nope not a clue."

At that point my youngest daughter pipes up "Who cares we aren't ever going to see these people again. He's not hurting anything, let's eat!"

Very sage advice I think.

Details, details

The girls are already at school, the husband has sleepily asked for 10 more minutes so I grab the PCS board. I make sure both sides have the pictures I need and start the morning rituals.

I am greeted with a teasing smile and he starts to tug my finger, "Pull, pull, pull." He tries to pull me into bed. I get my finger free and show him the pictures; bathroom, toilet, flush, wash hands. I wrestle with this wondering if it is detailed enough or too detailed, either could have dire results.

The small toddler seat is already in place, because otherwise he would fall in and he is scared of the too big hole. He doesn't like this room of the house unless he has snuck in by himself free to play with creams, lotions, soaps and make up. I struggle to get him up off the rug and into sitting position, and keep him there by playing a game. I tickle his nose with a paint brush, he grabs the paint brush and throws it, I chase the paint brush using my funny screaming voice "Oh, NO!"
This makes him laugh hysterically, but he stays put on his throne.

He decides he is done after a bit even though nothing has really been "done". We go through the motions of flushing and washing hands, then move on to the second part of the PCS board; toothbrush, tooth paste, wash face, brush hair. He brushes my teeth and hair more than his own and only consents to washing the mouth area of his face.

On to the kitchen to have breakfast now, he chooses the cereal (of course). I place the sugary treat in the bowl and place it on the table, he has grabbed a fork from God only knows where and starts eating. I grab a spoon from the drawer and milk from the fridge. The exchange from fork to spoon goes smoothly after I demonstrate how much more cereal he can get with the spoon. I pour a small amount of milk over the cereal. This isn't preferable to him. He looks at me and starts the squeaky "Lamaze" breathing. I turn and place the milk back in the fridge pretending I hadn't heard his objection. He calms down and actually starts to eat the cereal and milk. I sigh with relief that no flopping meltdowns or ticked off shows of knocking off everything in reach will be happening.

I pour my third cup of coffee and hear a sudden stream of water. I look around checking faucets and water cooler and then see the puddle under my son. Turns out the details on the PCS are fine for him, but I think I need my own set to remind me to put on another pull up after flushing.

Tuesday, August 14, 2007

Now open. Moms' Taxi and Auto Club

First day of school and my eldest daughter is off for high school. I remember when she was so little and sweet, wore ribbons and dresses. Now she is nearing 15 and is asserting herself trying to spread her wings and find more independence. I would like to clip her wings and make her stay in her room till she shows more sense. I am aware however that isn't the loving thing to do and I have to let her find her independence as safely as I can. Anyway sense isn't likely to rear it's head till she reaches adulthood or perhaps has children of her own. I drop her off at the front door, remembering when I walked her in to her first day of kindergarten. The passenger side window comes down and the youngest daughter yells "Have a good day Melly Belly. Make good choices." I couldn't help but snicker.

The youngest daughter is the big fish in a little pond this year, eighth grade. She is nervous and excited at the same time. She is, like her sister, growing up too fast. I remember her first day of kindergarten and try to reign in the resentment that her Father wanted his turn to take a kiddo to their first day and I had to be at a new job. She isn't embarassed to kiss me or yell "Love you, Mom!" as she walks into school. At this age it surprises me, but also makes me glad of her confidence.

Little guy hasn't gotten his school assignment yet. The Gods of the county school system in their infinite wisdom, have not decided where to place all the 3 year olds yet and we will be notified by mail. We head back to the house and try to fall in to some sort of routine. I don't know why I bother sometimes. My Mother calls as soon as we get back, she has a migrain and needs to be picked up because she can't see properly to drive. I bring her back to the house and call the doctor to get her an appointment. They have one open in twenty minutes so, I drop her off and tell her to call my cell when ready, I am going to grab some groceries.

Connor and I get what we need and start to the check out. He does the sign for and says aloud "Candy" so I let him pick out a piece and start to put everything on the belt to be rung up. Cell phone rings, my Mother is done and ready for me to get her. The cashier is done and then decides to tell me her credit card machine isn't processing at the moment, and the credit card is all I have on me. I pay cash for the candy Connor has already consumed and left the store all my grocercies left there, I will have to have a "do over" for that errand.

By the time the kids need to be picked up from two different schools my Mother is feeling alot better and needs to get her vehicle. I pick up kids, drop her off at her car, and then head to the grocery to try again. This time goes off without a hitch, we take groceries home put them away and as I start diner, my husband has had a flat and the auto club will be over 2 hours getting there. Luckily the girls can finish up diner while keeping an eye on the little guy, so I am off again. It was nice that when the tire was fixed and I returned home diner was ready and one of the girls actually had a broom in her hand!

Regular night time routine continues, school or no, and at 10:15 I sit to wind down a bit with a cup of tea and a book. My cell phone rings, it's my Mother she has went to the store and she left something on that ran her battery dead. I go and give her jump and on the way back I remind myself that my good deeds will be returned to me by these same people that have made my day so hectic, and probably when they are having a bad or hectic day. Tomorrow will be better.

This morning after the kids are at school, my husband uses my car to jump his battery. He has to check on a house first but will then go buy a new battery. He calls because his truck wont start again after checking on the house. It is an hour since he left and after getting Connor ready to go "Bye-bye" I go out to find my car still running from when my husband had to jump start his truck. I am a little irked at this point and starting to feel frazzled and then something happened. Something that if you had a choice you would do hectic exhausting days happily if it would mean something like that would happen. If it was echolalia I don't give a damn it felt good to hear.

"Mommy! Mommy! Mommy!"
"What honey?"
"I woovvve ew!"

Monday, August 13, 2007


After this past weekend I am tired out. Wrung out and limp as a damp washcloth. Oh, did the little guy have a bad weekend? You ask. Actually no he had a great weekend. I am recovering from heat exhaustion from two days of being in the most horrifically hot and suffocating weather of the year.

Saturday -

Her 13th birthday is in just a week or two but in order for her to receive the best birthday present ever, we have drove to Sparta, Ky. It's a surprise that we aren't miles away from the stage, but instead VERY close. The music starts and three young boys run out on the stage to the sound of adolescent girls screaming and swooning. I could give a fig about this boy band that has turned numerous girls' knees to jelly, but as they run out and their presence in known, I almost cry. I see her face. It's like Christmas morning, the smile of all teeth and wide eyes that sparkle so blue. Her face is red but it could have been from the heat. It wouldn't due for her Mother to be crying at this moment so I staunch my watery eyes the best I can.

I am the dutiful Mom and get what pictures I can and brow beat people putting girls on their shoulders in front of my daughter. When the concert is over we take the obligatory trip to the vendor table to check out the wares. We notice that a lot of the girls have taken to the dividers surrounding the touring bus. She has to go, she might be able to get an autograph! After a few minutes of blistering heat and seeing two girls almost faint I decide this isn't going to happen to my daughter and ask her to move to a more secluded spot of the dividers. It's in a little bit of shade and a truck is blocking sight of the bus. It isn't likely the boys will be over this way, but it isn't likely either of us will be victims of heat stroke. After what seemed to be a good while we hear the ear-splitting screams that tell us that the boys can be seen. I look to the spot I moved her from and see all teenage girls eyes looking at us. I turn to see the same three boys that plaster her bedroom walls walking toward us. All of them thank her for being there and touch her hand (hygienic practices will be stunted for a bit) and the oldest of the three grab my hands and thank me for coming. My daughter describes the look I gave him as "Don't touch me, I'm not here for you, Idiot."

They are freshly showered and have on a fresh change of clothes. She asked them to sign an autograph but was told "We'll be back" They make their way thru thanking all and shaking hands, and are whisked off to (we soon found out) to sing the National Anthem before the races start. When she is finished with her conversation on my cell to her best friend screaming at 50 or decibels that "The Jonas Brothers touched her hand!!" I attempt to reason that these boys are really just that boys and they may be watching the race and they didn't say when they would be back. We needed to head back home. To my astonishment to agrees. On the way home I got two thank you's one for taking her and one for making her move.


School starts tomorrow and the eldest daughter still has to find the perfect pair of woman's Dickies. Low rise, Flare legged and black. Of all the stores in the local Mall we find one pair and they are two sizes too small. We check a few other department stores to find Dickies that are Men's, tan, blue jean, too big, too small, and too long. The heat is soaring and making the air conditioning in my car feel more like a paper fan. Little guy has had all he can stand and wont stay in the car seat without being allowed to hold two or more bottles of water. I decide we are going home and call whatever stores in the city are still open. I find a store that claims to have twenty pairs of what I am looking for, within an hour of closing time and load up the car. We get there grab the pants, try them on, pay for them, and return home with our treasure at top speed.

Thursday, August 9, 2007

Full steam ahead

Some days you just don't feel you have any thing of consequence to say. My little guy does however and yesterday I painstakingly recorded every word that he said down on a piece of paper. He said a whooping 75 words if you count numbers and letters, which I most certainly do. I know he knows more words but yesterday I didn't hear them. I would not have guessed he could say so many words.

His development is somewhere around the 24 months typical development. Somethings from 18 months are sticking around (echolalia) and somethings from 36 months are cropping up. Which to compare with last year about this time his was at 9 months on speech development.

He turned 3 in May and this progress is really incredible to me. He is a hard worker and he has taught me a lot. Guess I had more to say than I thought or rather my giddiness is running the show.
Excuse me while I go do my happy dance.

Wednesday, August 8, 2007

Speech and the Waiting Room

I had my first experience of being in a waiting room with other Mothers while my little guy was off having his evaluation. A very kindly woman approached me and we were soon telling each other about our lives. I guess I had told a few tell-tale signs and she soon became very quiet and looking very concerned.

"Uhm...Er...does your son have a diagnosis?" She asked looking very troubled.
"Yes, he has autism."
"Oh thank goodness!" She says with a huge smile.
"Pardon?" I asked with a mix of confusion and irritation.
"Well you said a few things that made me think he was but I didn't want to say anything in case you hadn't gotten a diagnosis or didn't suspect. He is still very young and a lot of kids don't get a diagnosis so early." She was rambling on very quickly to explain that she was glad I knew, not glad of the diagnosis itself.
"Oh yeah I already know." I couldn't help but laugh.

She then tells me about her son and his condition and we share our thoughts and speculations about what is the reason that it seems certain people are prone to have children with disabilities. Mind you these are only speculations and observations and I won't list them here because none of them are based on fact.

We enjoyed having another adult to talk to that was not a husband, therapist, or doctor. Someone who had some idea what the other was going through and was not going to judge the others child.

After awhile I see him coming down the hall holding the Evaluator's hand totally ignorant that I was even nearby. When he does see me he immediately starts trying to pull this woman, his new playmate, back to where they had come from and away from his boring old Mother. He doesn't take long to come to terms with the fact that the fun is over and his new playmate has to give me a report of how he did. He sits on my hip quietly, forehead on my shoulder and squeezing my arm, while the evaluator tells me about words he said and things he identified. She tells me about oral motor exams and motivations and her words are partially lost to me. I closed my arms around him to reciprocate the squeezes as he rubs his nose on mine and wraps his arms around my neck.

Seems our small time apart from each other did us both some good.

Tuesday, August 7, 2007

The things people say

There was a time in our lives that we thought things could not be better. The day after my youngest daughter's seventh birthday we were blessed with a bouncing baby boy. Two beautiful, wonderful girls and a beautiful boy, our family was complete. My young mothers in training were in awe of him and I in them. They were so gentle and caring.

Blissfulness and glee came to a screeching halt just three short weeks later when their perfectly healthy brother left us for no reason. Our family and friends rallied around us, but they said things that I think must be ingrained in human DNA. Things that force their way from our mouths when we don't know what else to say.

"God doesn't put anymore on us than we can handle"
"You can always have another one"
"You didn't have your tubes tied did you?"
"He is in a better place"
The grand prize goes to my cousin "Hey, wassup?"

I may sound like an ungrateful person that these things irked me so. I do know they were meant to be words of support, caring, and love and I genuinely appreciated the gestures. But surely you can see the flaw in all the statements when said to a bereaved Mother.

Three years later in an attempt to fill my aching arms, we had another bouncy baby boy and though it was a very happy time it was also a very nerve racking one. It was bliss like before but laced (or laden) with fear. Poor thing was not left alone for a minute without someone checking that he was still breathing.

We got past the three week mark and the fear started to ease a bit, a microscopic bit. I started noticing as he got older that he was not like the other babies I had raised. He would not make eye contact with me while breastfeeding. He would look at me while I talked or sang to him but only if I put him in his carrier. He would not sleep laying flat on his back in his crib. He had to be wrapped tight and place at an incline in his carrier well past the swaddling stage. Vacuums scared him terribly and I think it was the main motivation in becoming mobile. When he got to a point where he could sit in a highchair he started to laugh hysterically for no known reason.

Even though babbling and some words cropped up they were lost soon after and I struggled to find out why I couldn't get this boy to talk. I let denial that anything was wrong keep me from really questioning the pediatrician that told me "Each kid is different, he will start talking in his own time." Or the dentist's wife "His sisters talk for him right now. He will talk when he needs to."

He was two by the time we started getting any services and four months from his third birthday he was diagnosed with Autism. Not many of our family members or friends rallied to our sides this time. My Mother, his father, and my sister were about it. Maybe it's because I could tell by the looks on some of their smug faces at family gatherings, that they thought my son was a brat and I had let him go wild. Maybe because they don't understand what Autism is. Maybe they just don't know what to say.

Sunday, August 5, 2007

I have never been a great housekeeper. I do try my best, but gleaming surfaces and sparkling windows most often do not occur in my home. Add this to the fact that I have two teens girls that try to avoid chores like the plague, my husband is at work most of the time, my Mother has been spotted putting things under the sofa cushions, and my son is on constant seek and destroy mode. Well you can see how I have a recipe for constant pig sty status.

I am lax about some of it. Fingerprints on glass doors seem to not bother me much while I am cleaning an entire bottle of chocolate syrup off of a desk and my son. Dust on a overhead light goes unnoticed while I clean lipstick, butter, or similar substance smeared on a bedroom wall. Even chalk on the wall will be left unchecked while I put furniture back in it's rightful position or pull a toddler down from standing on the window sill, showing the neighbors that he now knows how to undress.

So when I bought an expensive sheet set this past week, first time in 15yrs not opting to get the less expensive sheets from Big Lots or Walmart, my Husband looks at me like I was insane.
"So how much were those?"
"Uh, they were on sale."
"Uh huh, you know they're white and will be ruined in less than a few days."
"I thought they were cream when I bought them."
"They're nice though aren't they?"
"Yeah, just a sort of treat for the end of the day."
"We should lock him out of here so he can't mess them up."
"You mean like the door handle cover we already have on the door?"
"We should try to find something else then."

So what else do you try? We have the knob covers the cabinet locks, and the drawer thingies. We put things way up high. He figures it out or catches a teen or elderly person slipping. I am wore out from the day of cleaning and catching the toddler Houdini. I slip into bed and the sheets are cool, clean, and crisp. They feel so nice to compare to the usual threadbare, washed twice today, see through sheets, that the half eaten cracker under my pillow barely registers.

Midnight snack anyone?

Saturday, August 4, 2007

Children songs now rated PG13

My little guy is very speeched delayed. He can say lots of words in form of identifying and in form of mands (asking for something), he can say some sentences or fractions there of, but these sentences are very new to the equation and are for the most part echolalia. I have sometimes wondered if he doesn't have apraxia, as sometimes he opens his mouth to say something and his tongue will not cooperate and just shoot back and forth in his mouth.

We had a wonderful OT until recently, her services had to end because Connor turned 3 and was no longer eligible for her program. She is very tactile defensive, so it was very funny to see her with my very tactile/sensory seeking son. But she came up with the best ideas. I suppose maybe she did this going off of what she herself couldn't stand. So when she said during one of her visits,
"I would love to see what he does with a vibrator in his mouth."

I have to admit that my first reaction was one of shock. So she explain to me that she was talking about a zip vibe, which is sort of like a battery operated toothbrush but has rubber tips he can bite on instead of the brushes. This was intended to make him more aware of his jaw muscles and such. Well this worked but a little too well or maybe my timing for it was all wrong. Long story short he had to bite something and when biting his own leg didn't produce satisfactory results he bit into a bar of soap. Chaos then erupted for a big part of the night.

We have since decided to stick with more low key tactics. Even though he does have a touch screen and programs he loves along with PCS cards and such, he loves music. He especially loves children's songs where you either have to do dances or hand gestures while singing. (Itsy Bitsy Spider, Wheels on the Bus, etc.) He can only allow one person at a time to sing with him, any intruder will find a little hand over their mouth. If there are more than one intruder on the sing-a-long he will flee. As has been the case at every birthday party so far. Hubby hasn't been allowed to join in on the singing very often, because he either doesn't know the right words or he messes up the hand gestures.

Last night as Hubby was lying down, Connor came in to play. He takes Hubby's head in his hand to make sure he has his attention.

"What buddy?"

Connor starts to jump on the bed and taking big bounces he sings as loud as he can.

"Asses, asses, we all fall DOWN!"

Friday, August 3, 2007

Forget and let forget

The morning started of great. Connor was awake and singing in his bed. I got up opened his door and told him "G'morning" otherwise he would stay in there all day. I go to the kitchen and coffee is already waiting on me. How heavenly! I peek out the side door and see Hubby is outside making his morning calls telling everyone where to be and when. Probably outside so to avoid having each person sernaded. I call down stairs to the teens and tell them it time to get up. The eldest has to get ready, today is freshman registration. Hubby is done with his calls and comes back in.

"She's getting ready now." I can tell as soon as the sentence comes out of my mouth that he has forgotten.
"!@#$, I can't believe I !@#$*% forgot! I have a contractor meeting me in Indiana in 30 mins!"
"Does she have to be there? Can you drop off the papers and pay the fees?"
"Yeah I'll do that. Should be ok right?"
"We can only hope at this point. You did remember his speech evaluation is at 2?"
"Yeah I will stay here and do paper work till you get back"

The problem was solved for a total of 10 minutes.

"I'll have to come get you two and drop you off to do this. Have the younger teen keep an eye on Connor. They have this long line and a 12 step process and I will be here all day. Besides they have to make her an ID."

He drops us off at the highschool where we grab her schedule and wait in an ID line for an hour. Where it becomes pretty obvious she forgot to brush her teeth. Then we pick up books, locker combinations, handbooks, and pay fees for Orchestra, honors classes, art/photo club, and various other stuff, which turns in to a small fortune. We then find the classrooms for each period; 2nd floor, 1st floor, 2nd floor, 3rd floor, 1st, 3rd....
"Mom you think they did this on purpose?" She laughs.

Hubby picks us up and I am annoyed yet again. The viola he was to drop off to be strung and tuned, that cost three times the amount I just gave the school, that was handmade with inlay, that is sensitive to humidity and cold alike, is in the bed of his truck!

1:30 rolls around and Connor and I are on our way to his speech evaluation. He is always happy to be riding in the truck. We get there and sign in and he is very excited, it is the same building OT is in and he knows the next hour will be all about him. The receptionist calls me over while I wrestle with a toddler that is dying to run the halls at top speed.

"He has a speech evaluation?"
"Uhm... it isn't today."
"Really, you're sure?"
"Yes, Ma'am. It is on the 7th. I can understand how 7th and 2nd sound alike though."
"Thank you."

I then have two challenges in front of me. One this little boy is very upset that there will be no treatment or new toys played with today and he is now clawing, pinching, and kicking. Second is the dear man I have been a snippy b*tch to today over things he has forgot or overlooked.

I finally get Connor in his carseat and bribed to remain in the belt correctly, using what little ABA I have in my possesion. We head off to the grocery to pick up a few odds and ends and to take him somewhere instead of straight home which would cause more meltdowns. As we pull into the parking lot he starts chanting "Cookie, cookie, cookie"

We gather what we need and little guy is being a model citizen and I see it the
most perfect thing that says "I am so sorry. I have been an ass. Please forgive
me and please don't make any snide remarks."

Oh and we got the cookie too.

Thursday, August 2, 2007

To Be or Not to Be, and Other Questions

Little man has been without "Official" treatment from a therapist most of the summer months. Having turned 3 in May, he was ceremoniously release from the early development program of the state and we had been on waiting list for a couple of different centers or therapist that our insurance will pay for while I do floor time, speech, and occupational therapies on my own.

Hubby has been trying to keep up to date on everything going on but has a more than full time job. It is there for that sometimes he can blow things out of the water without even a second thought. He is has had to take off early so that we can take Connor to evaluations for OT (we finally came to the top of the list) since I wrecked my van in Jun, and everyone in the known world is on turtle mode so I have yet to get another form of transportation. He decides he can take him to the eval and first treatment himself so I can get a break. My break is there for filled with telephone calls from hubby to get more information that is requested from him.

As early as last December Connor had very few words, very nonexistent eye contact, and rarely responded to his name. He didn't pretend play or even parallel play with other children. All of this was true in Jan when he was diagnosed. He has made remarkable progress since then and is very chatty, responds 75% of the time to his name, seeks attention, has a few 3 or more word sentences, sings songs, and the list goes on and on. He isn't anywhere near up to par with his NT peers of the same age but still it's gives us alot of hope that communication at least will improve to a point that we can have a back and forth conversation with more than 2 exchanges.

So when hubby came home from the first appointment with OT he had loads to tell me as most of the treatment session was another Q and A with the new therapist. First was that Connor remembered which rooms had the toys and wanted to go there so was a tad fussy at the beginning. Cool!

Second was the therapist said he was not as profoundly autistic as the rest of the patients. Great, but seems like a weird comment. Maybe it's just me.

Third, she says that if he continues to progress he could lose the diagnosis of autism in lieu of ADHD in a few years time. WTF?!

I instantly had visions in my head of the woman in the garage being told she needs a new engine when she came in for an oil change, or the Mother who pays loads of cash to the coach that insists her kid could be in the Olympics, or peddlers of snake oil to cure any and everything. I am fuming at this point, how dare she tell this gullible man, who only wants the best possible for his son, that in a few years time he may not be autistic!

I want to call her and talk to her about this. I want her to tell me her qualifications and motivations to make such a statement. How long has she been a therapist? How many autistic children has she treated and how many children has she actually seen this happen too?

Then the thought occurs to me that I know nothing at all about ADHD or how serious it can be. It just seems that short of life threatening diseases and more cognitively depriving conditions, almost anything is better than autism.

Wednesday, August 1, 2007

The Day No One Predicted

We packed up all our supplies, separated into our separate vehicles and left early in the morning. Mom and the eldest teen girl with me. Connor and the younger teen girl with hubby.

Before we have left the city my Mother has found a huge flaw in my list of packed supplies. I have neglected to take any hot wheels with us so we stop to purchase more. We reach the marina after much anxiety and squeaks from my still traumatized daughter anytime a car gets anywhere near ours.

Hubby has beaten us there and I find the younger teen girl and the boy already on the boat. He looking a little wide eyed but after we give him his cars his settles on to the floor to play. So far so good.

It started off a little tentatively, but he adjusted like a champ and to my great relief when the boat moved he did not. We fished and he smacked the water with pole or loved on Grandma's feet. It was the best fishing experience she had ever had, even tho she never got the first fish.

We swam, or I should say the girls and I did. Hubby and Mom stayed on the boat. To my huge surprise every time we tried to get Connor into the water he would scream. But he loved waving to us, saying "hi" and throwing objects off the boat to watch us chase down. Luckily the only things he threw off were of the floating variety.

At the end of the day he got very chatty and keep telling us "Water!" He did get a little irked when I asked him "Where?". He finished the day with eating a good dinner which is a rarity for him.

I know hubby made sure that if anything happened he would be on top of it. It made everyone's day that much better that I could relax a bit. What a great man.