Speak up and ask

Connor and Daddy had been counting down for over a month to the day when Cars 2 would be released. Unfortunately after all our preparations Connor was only able to tolerate other children for about 20 minutes before informing Daddy "I gotta get outta here!"

I am so proud that he informed Daddy that he needed to leave rather than bolting. I really wish he could have enjoyed more of it.

I call my friend M and told her of the problem. Miss M has a boy the same age as Connor and they share a similar diagnosis, so I know she can empathize. She tells me about a theater in Newport (hours away) that has a sensory friendly movie once a month. I find myself whining "That's so far to travel with him for a situation that may or may not work." Wha

"Gas is so expensive" Wha Wha

So my friend Miss M calls the theater 5 minutes from my house and tells them.

"You know the theater up in Newport has a sensory friendly movie once a month and that is something the kids and parents around here could really use."

The manager: "We can do that. What do we need to do?"

Miss M: "Only dim the lights and turn the volume down."

The manager: "OK, and we can block off that theater for only special needs children."

Miss M: "Great, but a lot of these kids have dietary allergies."

The manager: "They bring their own snacks and drinks in."

Miss M: "Great! When can we do it?"

The manager: "How about this Saturday at 10am it will be $5 a person."

Miss M: "Thank you thank you thank you."

That one phone call made amazing things happen. That Saturday over 400 people with sensory issues and their parents got to watch Cars2 in a theater. They had to open 4 theaters and the staff was awesome. They let our local FEAT (Families for Effective Autism Treatment) set up a table inside the lobby. They were at every ones beck and call. They informed Miss M that they would like to start doing that once a week even though Miss M told them she couldn't promise that big of a turn out every week.

Not a single meltdown was had and if there had been, so what every person there would have understood. A few of the most moving things were the adults with autism coming in excited to see a movie at the theater and not at home and the mother that told Miss M that this was the first time ever that she even considered bringing her 19yr old son to the movies.

Thank you Miss M for speaking up and asking for us. You are continuing proof that one person can make a difference.

Back from Hiatus or somewhere

I know it has been a LONG time since I posted. Actually that is an extreme understatement. It's been a long hard road and it took a moment for me to put my big girl pants on and take care of business. That's all sorted now but it started with this note from Connor's kindergarten teacher.

'Mrs. Gibbs,

Connor has had a rough day - there was an episode that lasted for 55 minutes this morning (9:45 - 10:40). Everytime he kicked the desk, I held him, til he was quiet to the count of 5.

There were several several episodes the rest of the day including him kicking a classmate instead of a chair during lunch.

Trying to get out of my hold, he blew his nose on me, spit, and then urinated. I tried to make sure he was safe, but his squirming and other movement against the rug, has caused some rugburns on his face.

An ECE resource person was here to observe another child, but she took notes and will be at our IEP meeting too.'

How mad are you just imagining this being your child? He was 5 at the time.

New addition to the household

So now not only do we have a favorite autistic in the house, we have an older lady with a mechanical mitral valve, pacemaker/defibrillator, and healing from a hemorrhagic stroke. My mother thought she had a sinus infection and when it didn't clear up a xray showed a very enlarged heart.

A mechanical mitral valve was placed the end of January and a pacemaker placed in early February. She came through all of this with flying colors. She switched to the heart healthy diet and was taking her meds with no problems. She was going to cardiac rehab three times a week and was really enjoying it.

She was staying with us until she could return to work and take care of herself again. We used social stories with Connor so he would understand that he had to be gentle with Grandma and everything was going great.

Then the morning of April 6th she got up and was singing and humming. She couldn't find her teeth so she couldn't be caught at cardio rehab, but her mastectomy side was bothering her a little anyway so we decided to call in and just go back Wednesday. After finally finding her teeth we took a little trip up to Kinko's to fax out a certification papers for her job. On the way home she asked if she could use my makeup because she thought she looked so old, and she asked if we could stop at Krogers to get some decaf tea.

My husband calls as I pull into Krogers parking lot and after deciding he was going to talk for a little bit Mom and I get out of the car and head into the store. She goes through the doors and grabs a cart while I finish up my conversation just outside. When I got off the phone a minute later and go through the doors, a fireman runs past me. I remember seeing a big yellow firetruck leave as we pulled in and think to myself "I think they left without you buddy."

I stop once through the doors and wonder which way I should go to catch up with her when I noticed there are two more firemen surrounding what I at first think is a small child on the floor. I don't want to be a rubbernecker or get in the way so I try to think of which way to go to catch up and stay out of the way, when I notice the purple sleeve and gray lining of my Mom's coat.

"Mom!?"
"Is this your Mother?"
"Yes! Is she breathing?"
"No"
"Have you got a heartbeat?"
"No."
"What the hell you mean no? She has a pacemaker!"
"I don't know what to tell you ma'am we can't get a heartbeat."
"OK"

I then slide down to the floor with my back against the feminine hygiene aisle and rattle off dates of surgeries and dosages of coumadine and the like. The fireman I saw running out the doors returns with a defibrillator. The defibrillator had a nice calm female voice and I listen to her giving instructions as I call my sister to tell her what is happening. That conversation is another post in itself. She remembers it way better than I do. I call my husband after that to have him pick up Connor from school.

While they are working and waiting on an ambulance I know she would be mortified that they cut her new bra and have her chest showing in the middle of the grocery. She tries to take a couple of breaths and open her eyes, but she can't do it by herself.

When we get to the emergency room I expect them to tell me she is gone, but instead they lead us to ICU and tell us she is a candidate for Arctic Dawn, a new procedure that lowers the body temperature slowly and keeps it at 96 degrees for 24 hours and then slowly warm her back up.

It was Easter Sunday when she first shows her eyes, she pulled out her vent and a trach when it is placed. We don't let her know about the feeding tube in her stomach. She doesn't remember everyone at first but slowly gets things back, and needs the same information repeated every few minutes. She also developed a sailors mouth. The first words she mouthed were "Momma" and I thought my 82 year old Grandmother would do cartwheels. The she said "I need to used the bathroom" then "I want to go home!" and that soon turned into "I want to go home! I hate this g*d damn fucking place!"

She was really out of it for a while but she is getting better and better. At first she had more hours of therapy a week than Connor did, and I must admit for a bit I was wondering if ABA would be to her benefit. Mom is now at home to stay with us. It will be a chore and then some to get her house fixed up and sold and then the big problem, to find her something to do so she isn't so bored all the time.

A few notes to clear things up.

What happened: her heart went into ventricular tachycardia which cause a cardiac arrest, when she fell she hit her head causing a brain bleed (hemorrhagic stroke).

How were the firemen there that fast: They were shopping. A lady saw Mom fall and went to the next aisle to ask the firemen to help. One of the firemen was named Mike, mom was the first person he had ever saved.

GF/CF chicken nuggets and other misadventures

We have jumped on to the bandwagon of the gluten free/ casein free diet. This has been tough! It seems everything in the known world has gluten and or casein in it! If you add to this the fact that my little guys craves bread and breaded things like a crack addict, then you can see the recipe for disaster.

I've had help along the way with removing all offending foods from the house. Other Moms have directed me to Whole Foods Market with lists of gf/cf items, things that are soy, almond, loaded with proteins, and other good things. My daughters, Connor, and I made a trial run to this store, just to see if the atmosphere was acceptable. Check the lighting and glare of the frozen food section. There is no toy department so this is a major plus. Though my youngest daughter did say the seafood section smelt like a penguin exhibit.

We all loved this place! Connor had his little basket and we did manage to get cf soy cheese, a watermelon, spinach, and juice smoothies before we had to go. He never had a meltdown or run across anyplace in the store he couldn't stand to be, but he had his engine on high and wanted to see every bit of the place at lightning speed. The girls and I did our 'divide and conquer' move, and made sure he was in someones sight and safe at all times.

After our trip it was time for me to make the gf/cf versions of his favorite foods; cheese bread and chicken nuggets. The cheese bread was easiest. A premade personal sized pizza crust, soy cheese, cf butter with garlic microwaved for a minute and he ate the whole thing. The chicken nuggets have been a bit more challenging.

Every single recipe I have tried he has looked at the nuggets then looked at me and said "No! Chicken nuggets!". So I tried to fix the shape of the nugget to look more like what you would get from fast food places or the store. "NO! Chicken Nuggets! No! Chicken Nuggets!"

I bought the microwave dinners with chicken nuggets and french fries, taken out the nuggets that come in it, replaced them with the gluten free ones and popped the tray back in the box and back into the freezer. This seemed to work until he picked one up. "No! Chicken Nuggets! No! Chicken nuggets!" Have you ever picked up a chicken nugget from a fast food place? If you squeeze it a little it is kind of spongy. If you take a bite and look at the meat inside it you will see that it is preformed meat. After lots of research I found out that those little beauties my sons loves so much are not only preformed Frankenstein meat but it yields a surprisingly large amount of skin. Yeah, I don't know how I'll get over this stumbling block. I'll figure out something.

I would like to give a special thanks my sister and her co-worker Mrs. Kimbrough
for directing me to A Year of Crockpotting.
The family has enjoyed 2 solid weeks of gluten free/ casein free meals! While Connor has enjoyed his chicken nuggets.

The theif and his transition

After wowing me with an "I wuv you." unsolicited I was on cloud nine. I was sure I was on to what was to be a great day, maybe even week. Nothing was impossible. So I returned to the school to pick him up.

I get out of my car and wait with the other three regulars, parents who drop off and pick up instead of putting their tots on the bus. I am already beaming from ear to ear before I see fifteen little heads bobbing through the hall in a single line. A little head peeps in and out of the line looking towards the window, the face attached to that head is also beaming.

He looks just like my guy, but it can't be, no one is holding his hand. My guy wonders off, he can not go through the hallways expecting to follow the crowd. They may not notice all the wonders there are to discover. I look at each aide and teacher in turn to see where Connor is. They are not holding his hand.

Oh wow, it is him walking all by himself, look how big he is! He looks so proud of himself. Wow oh wow!

I am beside myself as he comes bursting through the front door towards me and then I see and hear about the cause of this miraculous event. His arms and hands are filled overflowing with farm animals, that it turns out, he nicked from another class room.

Hey, so what! A smooth transition and he still walked down the hall following the class as expected. Even if it was because if he found anything else, he had no room to carry it.

What is autism, revisited

I had finally come across a website that explained autism without controversy (I think). That really just explained the Triad of Impairments.

1. Impairment of social interaction
2. Impairment of social communication
3. Impairment of imagination

In addition, the following observations are often made in individuals with autism:

• Delays in development of language
  
• Inconsistent patterns of sensory responses (egs: apparent insensitivity to pain; an apparent deafness at times, yet distress at certain everyday sounds like a dog barking; over-reaction to being touched)
  
• Uneven patterns of intellectual functioning/ special (savant) abilities in certain areas, yet poor development in other areas
  
• Marked restriction of interests and activities/ tendency towards repetitive stereotyped activities.

Pretty short explanation I think. Not the run of the mill "Autism is blah blah blah enter what ever degree handy here to further understand droning explanation." nor the BS of "Robot, lack of empathy, only literal, no emotions, no personality..."

The best part of the site was the FAQ. These were the questions I needed answers to when we first found out, and questions I needed polite answers to for others. Questions like;

• Is autism caused by bad parenting?
• Is it a mental illness?
• Is it the same as mental retardation?
• Do they look different? (I know my sister loves this one!)

Short quick answer for me to give in order to keep it polite...NO!

I still stand by what I said in the previous post that autism is personal. What is said about one person with autism can not necessarily be said about another. What one family goes through in their daily lives are not always what another family goes through. What helps my son may not help your child and vice versa.

Yet I have another explaination as well. Autism is what makes it so emotional when my 3 yr old son, with out being prompted or had it said to him first tells me "I wuv you" when I dropped him off at school this morning.

Expectations

He has learned his landmarks.
"Elephant!" he squeals as we get closer to the putt-putt.
"Feesh!" as we get toward the area of the Moby Dick.
"Super per per man!" as we near the Wal Mart. It is now a routine every time we stop here to ride the Superman train before getting in a cart.

After we are properly in the store "Bicycle, bicycle, bicycle!" and we make our way to the back of the store to visit the bicycles and try to avoid the toys all together. Many more trips in that department and I will be very broke and my house will be an even closer equivalent of Toy R Us.

We are there for two things, the oldest needs a flash drive for a business and marketing class, and I need to see what earphones they have available after breaking the very expensive pair the OT loaned me. As we try to wind our way through to electronics, Connor is beginning to look frantic. He reaches over and his hand makes enough contact with a display to knock part of it over. His sisters are kind enough to pick it up while I continue to the desired destination.

Now over the threshold that places us officially in the electronics department Connor can't take anymore. He is standing up in his seat and trying to climb over my head. The back of the cart seat is folding forward me, trapping his legs. Finally removing him from my head with hair covering my eyes he sits back down. His bottom lip is pooching out threatening to take over his face. We refer to this phenomena as cup holder lip. Big tears are welling up in his little eyes and he looks up at me whining "Mater, Lightning McQueen, Tractor?"
"You have all of those at home Honey."
"I wanna bicycle!" he cries.

This what I had been hoping to hear voluntarily. The one thing we had been working on is saying "Want" when labeling something that he wanted. He surpassed that goal and added "I"!

Well of course he got to see the bicycles! We grabbed a flash drive and went back to see them. Even though by now we are being tailed by a female security person for our weird antics. My oldest teens becomes therapist to help him through his transition and we go through taking our time and saying "Bye-bye" to each bicycle. Yup, my girls surpass expectations too.

New Friends

With the littlest one in the bed I was ready to post on my blog. I had something of importance to say, big news to report! I get comfortable in front of the screen and attempt to log on only to find I can't produce an @ symbol. I try again, nope, nadda. Assuming that it is just one of those things that only takes a restart of the computer to fix, that's what I do.

Computer starts back up and now I can't produce a, s, d, j, k, l, or anything that requires the shift key. OK, I try and restart again. Same thing. Crap! I am starting to get nervous about computer hijackers and key loggers. I run my anti-virus, Spybot search and destroy, and windows defender, because woe be the world if the vital information on my computer should land in the wrong hands. Nothing.


I walk downstairs in the dungeon my husband calls the library and ask his advice.
"Try another keyboard." He doesn't bother to look away from his screen.
"You have another one?"
"Yeah, just outside the door near the...."
"Near the what?"
"um..err.....just....there...by the refrigerator." Not being able to multitask it is hard for him to give me directions while banded together with nine other people to save the world of Azeroth from evil. (He is playing on multi player online game.)
"What, stuck in the Mountain Dew box that you've have used as a trash can?"
"Yeah."


Since it was only paper trash I pull out the keyboard, wipe it down and use a can of compressed air on the keys. As you can tell, that did the trick and I am saved from disappointing my devoted readers (at least 2 people anyway).


I had asked the question in my last post of how would you explain autism to someone who asked. I had started on a post but got a little lost in the things it is and is not, as it pertains to Connor. I have poured over it repeatedly and it just doesn't portray what I would like just yet. So for now the answer to "What is autism?" is "It's personal."


Oh and the big news? Well, Connor and I have been invited to join a playgroup. All of them 30 something moms and dads with 3 yr old autistic sons or daughters. We are going to the zoo this Saturday and I can't wait for Connor to get to finally see the baby elephant. I talked to one of the ladies in the group today and it helps that she has a great sense of humour and explained that if any kids have a meltdown during these outings no one is there staring at you wondering what is wrong with your kid, or wondering why you didn't have them under control.


I feel like a kid who has just met a new friend. I haven't made many since high school and had not managed to keep many of the ones from those days. One of the ones I had made since then had got divorced and I guess gave custody of our friendship to the husband. The one thing that I find a little concerning is when I was young I would be really hoping that they liked me. Now what I really hope is that I will like them.

What is Autism?

How do you answer this? Of course I know what Autism is, I just have a hard time explaining to anyone that asks.

Last December we went to my Aunt's house for the family Christmas party. We did not have a diagnosis yet, even though we knew what diagnosis we were going to receive. Most of the family members at the party did not know anything was wrong with Connor other than a speech delay. So as Connor was more disregulated, we got those looks that said, You need to control your kid. and He sure is high spirited isn't he? We didn't stay too long as it was just too much to handle for all of us. We went through and said our Good byes and my uncle chimes in, "Dortha, he reminds me why I don't have anymore kids at my age."
"Oh yeah?"
"Yeah, I wouldn't have the energy, even when they weren't being bad."


Fast forward to now. My uncle lives in another state but has come home for a funeral. It was just my Grandmother, Aunt, Uncle and Mother in the car and evidently he had been clued in to what was going on.
"So what is wrong with Connor?" he asks.
"He has autism." my Mom explains. Thinking that that says it all.
"Yeah, but what exactly is Autism?"
She was lost for words on how to explain, just as I find I am at times.

My uncle isn't a mean person and didn't mean to hurt any ones feelings with what he had said at the party. He honestly did not understand and I didn't take time to explain. My Grandmother found an article in People magazine about a celebrity that has an autistic son and has some idea now. However, I can't throw an article at everyone who asks.

I wonder how to explain so as not to use words like, receptive, proprioceptive, vestibular and modulation. Also how do I explain without it sounding like I'm singing that old Hee Haw song;
“Gloom, despair and agony on me,
Deep, dark depression, Excessive misery,
If it weren't for bad luck I'd have no luck at all,
Gloom, despair and agony on me”

So long explanation made into a short question. How do tell people what Autism is?

Occupational Monday

Within a small space of time things change. It is human nature to change and it is human nature, I believe, to find this a tad annoying. As being one of those little people that hates transitioning, Connor loathes much change. With that being the case I fully expect next week to be a pain in the rear.

Late last Friday afternoon the county school system called to say they had finally found proper placement for Connor. The rise in specials needs students was such that is took several months to place everyone. I find the whole thing rather interesting that all of the sudden the county has so many special needs students, mainly 3 yr olds. Surely it hasn't always been that way.

Anyways, new schedule is 9:30am - 12:40pm, Monday through Thursday, meaning all therapies now have to be rescheduled. I spoke to the scheduler thinking this was going to hard to accomplish. Restricted times were 9 - 12, Mon - Thurs, and 2 - 3 Mon - Fri. Doesn't leave alot open does it? The scheduler was a pro and had it sorted in no time. Speech on Thursday right after school and OT on Friday.

I am excited and scared all at the same time. I have fantasies of the 3 hours I will have all to myself. Time to put my feet up and relax, or catch up on a few of the many things that get neglected on a regular basis. I also have fears that I will barely return home before I am called back to retrieve my son. I fear all the different scenarios that could arise; meltdowns, hitting, kicking, biting, non-cooperation, hiding under tables, running.

My mantra for the week, He will adjust and will be making huge progress. He will be playing with other children his age. He will do great!

Occupational Monday will be no more, instead it will be Occupational Friday. Monday, or least this coming Monday will be Blubbering, Crying, OMG, My Babies First Day of School Monday.
I will be sure to take pictures.

Let me get this straight

We had a lazy day yesterday. Well that is to say Connor did as I only insisted he do very few activities as I went through a box of four Mr. Clean magic erasers. I know it sounds like a horrible thing to do to yourself when you are recovering from a frustrated overwhelmed mood. However coming home in that mood and seeing your house looking as if it is occupied by a pack of bachelors rather than a family of five has an unpleasant effect to say the least.

Sparkling surfaces and fingerprint free walls were mine! Most toys and therapy devices were in their proper place. I wasn't able to find my regular CD I would listen to while cleaning but was instead treated to a concert of Connor making up his own tunes. I couldn't understand but very few words but the melody was nice.

I suspect that my frenzy of deep cleaning must have popped up on my mother's radar, as that afternoon she arrived with laundry in tow. Connor is glad to see her and demonstrates for her how to run through the house like a mad person. He comes to a stop and points at me "Mommy"
he states, then points a finger at his Grandma "Mmm..mmm".
"Mamaw." I help identify. He has said it before but it seems he wants to make sure he has it right.
"Mommy." He points at me.
"Mamaw." He points at her.
"Yea!! Good job Connor!!" She claps and squeaks.

Happy with himself he continues to fly through the house with a huge smile on his face. When she is done with her laundry and ready to leave, Connor comes over to watch her go. She steps out the door and turns around to tell me to lock the door back because it wouldn't occur to me otherwise. She bends low and asks "Connor can you tell Mamaw bye-bye?" He runs forward at full speed and slams the door almost on her nose. She pushes the door back open.
"Bye-bye Connor."
"Bye-bye."
"Can Mamaw have a kiss." He leans forward and with his lips loosely puckered to oblige.
She thanks him and says her good bye's again then turns away. He takes off full speed again.
SLAM! and the door just misses her back side.

As I lock the chain back in place Connor is locking the doorknob and deadbolt singing "turn, turn , turn." We are now less concerned with working on fine motor and more worried about modulation. I consider a digital lock with keypad but he is good with numbers. I take solace in the fact he isn't near tall enough to reach the lock at the top of the door. Soon enough though I fear we will rival Fort Knox in security.

Weight of the world

Most normal people, whoever or wherever they may be, would boggle at my want for half of a well planned out thought in my head. I am finding more and more that forgetfulness is evading my brain and I find myself doing silly things. Like calling the grocery right after I leave to ask them if they would please hold the smoked sausages for me, that I just forgot in the self check out.

I am also getting very tired and stressed. Meltdowns have been getting far less often and in less intensity, except for the last two weeks. Wednesday seems to be the day for the long drawn out screaming, kicking and flailing sessions. Last week he had no speech therapy, his therapist had gone on vacation. Going back this week we sat in the waiting room and Connor couldn't keep his eyes off of another little boy in the room. The little boy walked over to Connor and as soon as he reached out to touch Connor, the boys mother gets a little panicky. "Don't now, be easy. Leave him alone he is sitting there being good!" She squawks as her son does joint compressions on Connor's head and by accident sticks a finger in his eye.

I wait calmly to see if this is what will send him in to flight mode. He sits there rubbing his eye and making small attempts to get free of the stroller. The speech therapist shows up right on time, I set him free and he walks with her hand in hand. When he sees we are going to her room it is too much. Aggravation followed so quickly by disappointment sends him over the edge and he collapses onto the floor.

Half the session is over before he calms down and participates. I sit in front of the door to bar escape and brush my arms and hands. My face, arms and hands are scratched, my hair pulled, and my shoulders popping. My feelings are hurt and my heart in pieces about what he must be going through to do such things.

When we leave he is perfectly fine as if nothing has happened, so I head to the store to pick up forgotten sausages and get pull-ups. He was a perfect gentleman in the store until we head to the exit and he sees "APPLES!"

"Honey we have already checked out and we have apples at home." Have to be told no sometimes, right?

I wrestle through the parking lot trying to keep my toddler from diving head first out of the cart, hold on to the groceries he is trying to throw out, and stop the contents of my purse spilling out. Once he is in his car seat and everything is calm enough to pull out, I can't find my keys. I check the bag, I check my purse 15 times, I check my pockets over and over. I stand behind the car looking at the ground to see if I dropped them. I can't find them. I sit in the drivers seat and let my shoulders slump. pop! pop! pop! They attempt to place themselves correctly.

I want to scream or hit something. I want to cry, but I wont. I am the adult here I have to figure this out. I have to buck up, get him back out of the car and go find these keys.

"OK, now that you have calmed down. Would you like to go get an apple?"

I found my keys in the cart he tried to escape from, and he was happy as can be with a 3/4 pound Fuji apple. I do fear I forgot to get some Aleve. Maybe I can order by mail?

Occupational Monday

The same ammo as every Monday.
Pressure vest? Check
Stroller? Check
Toys, books, wax candy? Check, check and check
Get there by the 11 o'clock appointment time? Why the hell bother but, check.
OT 15 minutes late for the appointment and send someone up to say she had a kid in a meltdown? Uh huh, what is she doing to this kid?
My kid in meltdown mode because his therapist has exhausted his patience? Yep, and he has hit his foot and is escalating to flight mode.

I have my suspicions about OT's being of the late persuasion. His last OT was always late and now this one is. I should just expect it by now but it still irritates me. When he sees her he has already started to recover and grabs her hand. He was delighted that she didn't take him to the same old room but instead to the gym. On the way she apologizes and tells me all the things I should not be hearing about the patient before us.

I get right down to business, I am to report how he did the past week after the listening therapy. "Monday he did a couple of good things and then Wednesday and Thursday were pure hell. I was at a point that he was never going to listen to music again if I had any say over it."
"What happened Wednesday and Thursday?"
"Any type of redirection or reprimand was met with whatever was handy thrown at my head, or things within reach knocked off of cabinets. He would stand there looking straight at me and doing whatever came in to his mind that might make me upset!" I am almost in tears thinking about it.
"So what happened the rest of the week?"
"The rest of the week was filled with REALLY good stuff. More words, more sentences, and he was able to hum to tunes better, where as before he was so offbeat. He told his sister Turn light on. He asked me What are you doing? He has been having some small steps toward potty training. Most importantly at bedtime when he is patting my face and nose, he isn't pinching them off. It's like he is realizing his strength." Once again I am close to tears.

"So do you want to try the therapy again this week? I'll try a different CD this time and maybe that won't cause the problems he had last time." She waits looking at me for an answer while nightmares of Wednesday and Thursday come flashing back in my mind. Then I think of all the good things he accomplished and a wise statement from Mcewen at Whitterer on Autism, there is no such thing as a free lunch.

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.

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.

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!

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.

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.

"Why!"

"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.

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.

"Truck..cars..Hello 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!"

"What?"

"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.

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.