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.

I spy

We were told shortly after my mother awoke from coma that she would have a period of up to a year to recover cognitively. Four short months later and I believe the gains she has made have begun to plane out. Which we were told was also a possibility.

As such we have got a few things to work on her brainpower. A subscription to reader's digest and a computer game that is a lot like the children book 'I Spy'. The game gives a list of objects (clues) to find in the picture and once you have found them you unjumble another picture. She really enjoys it but has a hard time remembering what some of the words are or what they look like.

"What does a fiddle head look like?"
"It's the top part where you can adjust the strings."
'OH OK."

A few minutes later I hear her practicing how to spell the word as she comes down the hall.

"S-c-p-e-t-e-r"
"You mean s-c-e-p-t-e-r, scepter?"
"YEAH! What is it?"
"Sort of like a large wand a king or queen would carry."
"Oh yeah OK."

"Is a tortoise a bird or a rabbit?"
"It's a turtle."

"I know I've asked you a thousand times, but what is a decoy?"
"A duck."
"A t-r-i-d-e-n-t?
"Trident, it's looks like a three pronged pitch fork."
"A l-y-r-e?"
"Lyre, looks like two harps put together."

I'm in the bathroom getting ready for bed and I hear her come out muttering"Molecule, molecule, molecule.."

She finds the girls in the living room. "Whats a molecule look like?"
"A Molecule?"
"Yeah whats it look like?"
"You cant see a molecule."
"It's part of a er those one things that your body is made of isn't it?"
I hear other mutterings but I can't make them out, shortly mom makes her way back to her room. When I get in to the living room I ask the girls "Did you get her straightened out?"
"No."
"No? Well next time she asks about a molecule, just keep in mind that what she means to ask is what does a Monocle looks like."

Gone fishing!

For the huge achievement of being fully potty trained (which I never thought would happen) Connor received his very own Sponge Bob Squarepants fishing pole. So after seeing him cast and reel his line over and over Daddy took Connor to his grandpa's to fish.

And not only did he catch his first fish, but went on to catch eight more! Everyone else was lucky to catch one or get a nibble. A true test of his sensory for sure as he put worms on his hook (with help of course) and held the fish to throw them back in the pond. A great day for Dad who always dreamed of taking his boy fishing and didn't know if it would ever be possible.



P.S. Happy 15th to my baby girl Gracie! You are loved so much by so many!

Deb

I am awake and standing beside my bed before I am aware that I am awake. This in itself isn't an uncommon occurrence as of late. Many times during a night I find myself on my feet thinking about warfarin levels and having conversations with doctors about the health of family members. A few times a have woke myself up uttering one word "heart".

This time however I realize why I am up, and sleep deprived as I am, I am pissed. The phone is ringing. I stumble my way down the hall. My eyes are so sensitive I can barely register the blue digital numerals on the cable box in the living room, it is 2 am. Reaching for the phone and about to make someone feel my wrath if it isn't a death, the fax machine picks it up. Ha! Let the loud screechy sound play in their ears!

I look on the caller ID and see it is one of my eldest daughters friends. Grr they should know better. Especially this one, she is close to the family. Her mother and I share many of the same views about rearing children. I start to wonder if I shouldn't go check and she if Melody is still up and maybe texting on her computer when the phone rings again.

"Hello!"
"Dortha, is Melody there?"
"Well yeah!" Of course she is where else is my daughter going to be at 2 in the morning?!
"Can I talk to her?"
"I would imagine she is asleep!"
"Dortha please let me talk to her!" I can hear in her voice that something is wrong and it isn't the normal teenage drama.
"Baby whats wrong?"
"My Mom died."
"Oh my God! What happened?"
"I don't know. My brother went down stairs to tell her goodnight and she was dead."

Shortly we are at her house. My sleepy head couldn't wrap around the fact that this had just happened and I am shocked that the ambulance is still there. She had not been moved yet. We didn't get back home until they finally got ready to move her mom around 5 am.

Deb was a great lady, we weren't extremely close ourselves, but cared a great deal for each others children. She was the first adult to take the news of Connor's autism as if it were not a horrible thing. She gave lots of great advice about schools and teachers that would be great for him. The first teacher she suggested is to be his Kindergarten teacher this year. She had called me one day while the kids were at school to tell me that That Boy was going to try and have Melody sneak out of Uptown that Friday. Uptown was the local churches way of giving the kids something to do on Friday nights. So hubby stayed parked outside all night to make sure Melody made the right choice, which thank goodness she did without her Daddy's help.

Deb went downstairs the early morning of July 14th with her Taco Bell, sat on the couch, covered herself up with a throw and began to watch a movie. She died shortly after from massive heart failure. She was only 45. She left a very distraught husband, a 19 yr old son, and a 16 yr old daughter. It is clear that the core of their family has been taken from them.

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.

Yeast or insanity giggles

So many times I have heard him giggle this mad cackling laugh. A mix between the goofiest nerd you can think of and woody woodpecker. Some of the events that would set these giggles off are not obvious and sometimes I would wonder if I should call the doctor. My poor child sitting there laughing at nothing in particular, but laughing so hard that his face is red and tears are streaming down.

Having taken the trouble to ask other Moms with little ones on the spectrum I heard a lot about yeast in the digestive track. Many children (as mine once was) are placed on gluten free and casein free diets in order to combat this yeast and start the process to clean up and heal the gut.

It didn't sound too far fetched to me really. So I would chalk these mad giggling outburst to yeast. Then things started happening that would lead to an epiphany...

It was the first day in a while that I hadn't had to hit the floor running. Yes I had to get Connor fed, dressed, and on the school bus and get laundry started and mom bathed, but there was no running to be done until later in the afternoon. I took the chance to read up on some neglected emails (sorry Sis) and forums. Laughing my head off at crazy pictures a friend had sent.

The more pictures I saw the more I laughed. Even running down stairs to check the dryer a picture would pop back into my mind and I would start laughing again. Before long I realized that I was laughing so hard I was crying. I hadn't really laughed in a good while and it felt really great. If anyone had seen me not in front of the computer they would have wondered what in the world was wrong with me, maybe I had too much yeast.

That's when it occurred to me that in Connor's case it may be a coping mechanism, or maybe it's just an inside joke ;-)



P.S. this is in no way a slam on any mom or dad out there trying to get their kid healthy with the gf/cf diet, just an observation of myself and my child.

A visit with Santa

For the first year ever Connor is truly enjoying the Christmas holidays. He sings carols, "We wish you a Merry Christmas", "Rudolph the red nosed reindeer". Of course those are the only lines he sings of the songs and sings them over and over and over. His enthusiasm over everything to do with the holiday has caused whole sentences to erupt from him such as, "Look at that snowman!". Every inanimate Santa Clause gets pointed out and several times he has attempted to get to the neighbors sleigh and drag it home.

I was still nervous about his reaction however when I found out that they were to have Santa at the Occupational therapist office. Plastic and pictures of Santa are not the same as a "real" Santa. We had already found out that our OT had double booked herself for our slot and we would be seeing the male OT, something we had never done before. Connor took well to Mr.R and soon was letting him chase him through the halls while he rode a bike.

I wait near the kitchen area of the gym for them to make their next round, but after awhile they hadn't come back. So I started to go up to the front and hunt them down. As our usual OT passes to clean up from being vomited on from her other client she informs me that Connor and Mr.R are going to see Santa.

Mr.R meets me on the way to the Santa room. "Connor's Mom! Come on, quick!"
So I rush to the Santa room with him not really knowing what to expect, to see my boy half skipping, half running around the room shouting "SANTA!" "SANTA!"
He had already had his picture taken with Santa and was now running and dancing around the room.
"SANTA!" "SANTA!"

Connor would stop running, come up to Santa, get near his face and say in the lowest voice possible "HO! HO! HO!"
To which Santa would respond, "HO! HO! HO!" while Connor examined how his mouth moved in the sandwich of mustache and beard.
Santa would interrupt Connor's running by throwing his arms in the air and yelling "Connor!"
In response Connor would put his arms up and yell "SANTA!" and they would give each other a bear hug.
He danced with Santa and wore the biggest smile ever.

It couldn't have went better than if I had dressed up as Santa myself.

Strides in achievements

January 9th, 2007 we got Connor's diagnosis. We cried off and on for a few days, read everything we could to get an idea of what we would be up against. We researched the best proven treatments. Most tell you the basics; speech therapy, occupational therapy, gf/cf diet, floortime, and ABA. In everything we read it said get ABA and get it now, 20 hrs a week or more if you can get it.

But we couldn't get it. Medical insurance would not pay and every charities' waiting list was full and seemed quite comfortable telling me I had to wait another year. All the time I keep hearing about this window. A small sliver of time in which I have to pull my child out to join the real world and not remain trapped in his own. After finding one program that would pay for the ABA, we were shot down because he was not in danger of becoming a ward of the state and was not in danger of becoming hospitalized due to self injury.

We had decided to try one more time after we were turned down. The next person to take our application was good. Very good. Now we have ABA and the new therapist has already started working with Connor. He loves her and tells her so.

We are only 1yr 9 months since we got his diagnosis and he has made more progress than I could have ever dreamed in such a short span of time.

The main things; He talks! He says Mommy ( and everyone elses names). He knows kisses are good for ouchies and sadness. He knows happy, sad, and scared. He knows how to argue "No, you broke it!". He is beginning to tell the difference between girls and boys. He is now using the potty, even though it is only to urinate and only if he is semi clad. He knows his alphabet and can put the letters in order if they get mixed up. He knows his shapes. He can count to 60. He knows his colors and loves to show off how smart he is.

This past Friday he let my daughter's friend know that she is brown. I thought it was great, he is so pure of heart and loves to show off for the ladies. There was no doubt that there was no racism in it, he has no idea about race. I am steadily waiting to lose an eye when he discovers mine are brown and tries to point out the fact. I am also waiting for him to tell me I am pink or peach with brown spots.

Another birthday...another chance for disaster

The end of August til the end of November, we have a large amount of birthdays and anniversaries in my family. Followed in quick succession by winter holidays.

The first of two end of the year birthdays at my sisters was coming up. This one for my dear brother in law. We prepare ourselves to head off triggers where possible and to give sensory when needed. We pack pressure garments in the car for Connor and Excedrin in my purse for the rest of us.

Our first obstacle was to be the entrance.

Usually it goes like this, ring doorbell or knock, person answers, Connor melts down on the entrance way, Connor recovers after a bit and enters premises. This time; door opens before we ring bell or knock, Connor enters happy as a lark.

Second obstacle, food.

Usually he is not interested in eating, but enjoys crumbling any bread substance to crumbs. This time he was thrilled to see "waterbolen!" (translation: watermelon) on the table and sat down and ate.

Third obstacle, singing 'Happy Birthday'.

Usually we all join in for a very out of tune version of the song and Connor either screams "NO!" or just runs from the room. This time he walked into the hallway and when we were done came back out to blow at the candles.

Usually after this we have had to pick up a completely out of sorts little man and carry him to the car and go home. This time he was enjoying himself. He was cooperative. He was talking to his aunt. He even made sure that he got his uncle's attention to tell him "Happy birthday! I love you!" Which is huge!

We all had a great time and stayed for a few hours, during which time Connor identified his uncle as "Damy". No one, and I mean NO ONE would have gotten away with this nickname. I don't think anyone would have even dared to call this very large man "Damy". Of course Connor gets away with it, we were all thrilled that he knows who he is and "Uncle Damy" couldn't be happier.


p.s. To my sister and her family, Thank you for a great afternoon. :)

Birthday cake anyone?

Connor got his first invite to a friends birthday party. Getting there was half the fun as Walmart was his preferred destination and when I pulled over to detangle the seat belt around his neck he thought we had arrived at the party. A few scratches later we did arrive at the party.

Guess what happens when you have three autistic toddlers, a couple NT children, and a bunch of adults at a child's birthday party. A good excuse to install a Xanax dispenser!

One toddler (mine) ran terrified looking for a dark place to hide when "Happy Birthday" was sung. One toddler withdrew and stimmed. One ate his cake, while looking for an escape route. One mom (the birthday boy's) had an anxiety attack. Then we moved the party out to the back yard.

Connor saw that there was a riding tractor exactly like his. He promptly grabbed it tipped it on it's back wheels and placed it where he could keep an eye on it. He scared one little girl away who tried to ride it, and ran faster than I had ever seen him when a boy said he wanted to ride it. He then hid it in some bushes. The birthday boy walked the perimeter of the yard and then went to stand behind a different bush. The other toddler ran from swing set to pool and back again rubbing his nipples.

It was really nice meeting up with the other parents and when we got home we were all nice and exhausted. Connor was fed, bathed and in bed when I happened to walk past his potty chair and saw PEE! I have never been so happy to see pee in my life and even though my youngest daughter suggested he may have poured some liquid in there, I was ecstatic.

He has been using his potty chair ever since Sunday night and I couldn't be happier for the progress he has made. But there are a few things to work out. First, if he has pants or underwear on he will not use the potty chair. He is to start school next week and I'm afraid of him regressing as I can't send him half naked. Secondly, he takes the potty chair to whatever room he knows he is going to be in, last night he grabbed it and ran to the living room so he wouldn't miss any of his video. Bowl movements still require a diaper and no one around, but I think the other problems should be remedied before we work on that one.

Any suggestions are appreciated, and a special thanks to Hubby, who modeled what to do for Connor even in that tiny chair!

Thankful Thursday...or is it Friday already?

After much thought and being quite sentimental this morning, I thought it time to thank a few people in my life that keep me from going over the ledge into insanity.

My daughters. Beautiful, intelligent, driven, and considerate young ladies, who see to it that I get a few minutes each day to breath! You are the walking, talking pieces of my heart.

My husband. Hot headed, quick tempered, and potty mouthed, and yet takes the time to listen to all my crazy theories and ideas. Gives me sound advice, supports whatever I decide to do, and takes it upon himself without being asked to help me with calls that have to be made. I love you more than I can stand to put down in words.

My sister. The absolute poster child for fierce love of family. She listens. She also gives me sound advice. She understands about Mom. She doesn't judge. You give me more strength than you can possibly know.

My Grandmother. Who understands and lets us have a few minutes on her front step so Connor can adjust and let himself in the house when ready. Reassuring me it's no problem 'she has read all about them'. It means alot that even though we don't see her often, she bothers to take the time to read up on his condition.

My Friend M. To be honest, at first I wasn't sure I liked you. My opinion was you were too damn chipper to be the Mother of a little boy so similar to mine. How wrong I was. You have helped me realize just how lucky the both of us are. You have inspired me with your relentless drive. You celebrate the little things with me because you truly understand how "big" they are. You let me rant and sometimes let me listen to your rants. I am lucky indeed that your truly annoyingly cheerful ass saw fit to invite me and Connor to your play group.

Yesterday Afternoon

There is a new boy in my oldest teen's life. As much as I would like not to have these worries of teenagers and their hormones, I must admit I like this boy. I also like that the parents are involved in his life much more than the last boy, making it much easier to for me to keep tabs on my daughter.

His mother had invited Melody over for dinner. She was to be there at 4:30. The poor child was a case of nerves and the effect was that we were ready to leave the house at 3. I had to pick up some things from the store anyway and knowing how it may or may not go well in the store for Connor I decided it was good to leave this early.

Once strapped in his car seat he begins a chat "Hat, hat, hat, hat..." all the while pointing. He directs my driving all the way to the store of his choosing at which point the chant gets more intense and higher pitched "HAT! HAT! HAT! HAT!" As we are turning into the parking lot his sisters try to get more information out of him about this hat.

"What kind of hat is it?"
"Is it."
"Is it a Lightning McQueen hat?"
"Lightning McQueen hat."
"What color is it?"
"Color is it."

I am convinced at this point he is too excited at the prospect of getting the hat, he is only going to echo whatever is said to him in hopes he says what he needs to in order to get it, but they continue.

"Is it a black hat?"
"Black hat."
"Is it a red hat?"
"Red hat."
"Is it an orange hat?"
"Orange ha........NO!" I could hear the annoyance in his voice and thought that if I could have seen him at that moment he would probably be rolling his eyes.
"Is it purple?"
"Nooooo!"

Once inside he leads us not to the hats but to the toy department in the car aisle. He goes to one spot and points up. I don't see anything but a collections of Cars the movie figures that he already has. He is pointing at one in particular so I ask him "You want this one?"
"Want this one. Yes." he replies.

I pull it down and he doesn't take it but continues to point to the one behind it. One he doesn't have, one with hats. He must get a better view of things at his height. His memory of where he sees them amazes me though.

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.

Facial Expressions

We're working on them!

You say Good-Bye, I say Good-bye

My young man has become very dependant on his schedules. Where he goes and when is very important for him to know up front. Every trip is planned out on his picture schedule, the number of pictures dependant on the number of steps to get to the final destination. Preparation to leave the house is to become another picture schedule since he now believes if you have your jacket and shoes (on or just carrying them) you are ready to go, regardless if you have any other piece of clothing on.

At school after I leave he is a different kid, closer to the one he was at home half a year ago. He barely speaks and does not express his wants. It was baffling at first to find out that the speech therapist at school had a goal for him to make 2-3 word utterances, while his out of school speech therapist is working on getting him to answer questions. It is a different world for him at school with overly busy walls, and children that he has no interest in.

I prepare the picture schedule with the PECS appropriate for each step;

Car, when we get in the car with seat belt on he removes the card, places it on the backside of the board and I prompt him to tell me where we are going next.

School, When we're parked I come to his door and he removes the card.

Office, We must sign in at the office every morning, this is the step that has caused the most trouble because at first he didn't want to go in, and then his bravery got the better of him and he decided to explore. This was fixed however with a "Don't get yourself in trouble, Connor." Yeah I couldn't believe that stopped him either.

Connor's class room, this is the last picture on the schedule. I had first tried to include a picture of a person waving "good-bye". I thought this would let him know that I was going to say "Good-bye". This backfired, upon seeing the goodbye card he grabbed his things and headed to the door.

The other obstacles in our way of completing the Office to Connor's classroom step is the occasional teacher and or therapist in the hall. To Connor this makes no sense what so ever. They are to be in the classroom, they do not exist anywhere else. The first sighting out of the classroom caused a meltdown in the hallway leaving me wondering how in the world I was going to get around this. Connor fixed it himself, now when he sees them in the hall or out the classroom he averts his eyes and does not respond to them. Yes, I'll have to come back to this one and remedy it.

The teachers and aides have always asked what they could do to help and have been most helpful, even adding the picture schedule to his IEP. However follow through has been hit or miss, causing them to have to deal with a meltdown in the hallway. They had left the classroom to go to the library, Connor is used to the idea that if the class leaves the room they go to the gym, lunch, or home. Not being shown a picture of the unexpected library before hand left him unprepared.

When talking to the aide and asking about using the pictures she told me he hadn't needed it as much since he got used to the normal routine. I was glad her boss was behind her listening to the conversation. The aide is the sweetest lady but she needs to be pointed back into the right direction occasionally, as do we all.

Respect and value

These two simple things are something I never really thought I had to worry about when it comes to Connor. He is sweet, endearing, funny, just one of the best kids ever put on the planet really, when you come right down to it. Or is that only in my eyes?

I am sure this Mom from my state thinks the same of her 8yr old boy. Educators trusted with his well being while at school obviously do not agree. If you respected or valued someone you would never lock them in a closet sized room.

My own Mother was so upset by this article that she woke me up bright and early on Sunday to make me read it. I don't know what is worse actually, the terrible situation this innocent young boy was in, or the dimwitted people that have posted comments on the article. Things that translate into; "That boy was making it difficult for the precious normal kids to learn. He shouldn't be allowed to be there." or "So what? He was being difficult. Teachers don't have enough resources to deal with that.". The resources these teachers do or do not have is not this little boys fault nor should he be kicked out of school because people believe the normal children should come first.

HBO recently aired a documentary called 'Autism the Musical'.
A Mom in the documentary made a comment that I really identify with. She said she could use the moments when people stare or make rude comments to enlighten them and get the word out but she could not make them respect or value her daughter. How true is that? Even though people are informed about the condition they fail to see that the person has a mind, thoughts, feelings, etc. The thought that the person they are smirking at may have intelligence totally eludes them. One comment made on the article about the little boy makes this quite clear, "If he wasn't taking anything in why have him in there? Put him in a class with other kids like him."
I will not even start on that one because I fear I will be typing all day.

The comments weren't all bad, but there were enough to put me up on several soap boxes, they were all mostly to do with autism so maybe you would say I was on several spectrums of soap boxes. Funny enough a little post about "special needs Moms" not having anything better to do than to stir up trouble (are freaking kidding me?) made me realize that was my new label.

I am a special needs Mom. I clean, cook, clean some more, taxi children to school and therapies, try to be a decent wife to my husband, make sure everyone in the household is healthy and happy, between all this I scramble for a moment or two to breath, find a second or two for me. But for all this I have no life and must stir up trouble where ever I can and put my poor child on display, it's quite sad really.

I know I don't have to worry about this sort of thing happening to my kiddo, but know this. If I found out someone locked Connor in a closet I would not be as calm as this lady and just sue the school. I would never have the chance before the person who locked him in got to sue me for bodily injury. OK stepping off my many boxes for the moment. Happy Hump Day!

Eat my chicken!

After the last few weeks wondering if my darling toddler had indeed been possessed by demons, we have finally landed once again in a very good place. He has abandoned his pursuits of knocking everything in reach over or running at windows with hands outstretched. Finding himself in solitary time outs until he could remain calm to the count of 5 has taken his heart out of it. What good is it to do these shocking activities if no one is going to act properly upset?

Good behavior has been abundant and so when it came time to make dinner and he wanted to watch a few videos on the computer I was very accommodating. It can be hit or miss with his communication about what he wants to watch so an amount of patience is requires from both of us.
"Rabby" he squeaks.
"Rabby? Can you point to it?" I am puzzled because we are looking at Thomas and Friends videos and I don't know of an engine with that name.
"Rabby, Rabby, Rabby!" He repeats and finally touches the character he wants to watch.
"Oh! Cranky."
"Cranky!" He smiles at me happy that I was able to figure it out.

As the video begins he sings to the music, "Dun da dah, dun da dah dah."
Perfectly he keeps the beat and then with out warning, "Eat my chicken!"
"Huh?"
"Eat my chicken! Eat my chicken!" He squawks, bouncing in his seat being very pleased with himself.
"Yeah, we are having chicken for dinner." I offer thinking maybe that was what he was going on about. Only to get a 'What the hell are you talking about' look in return. I leave it wondering where he might have picked that up and he watches another short clip this time about George the steamroller. It is only 40 seconds long and he sings along with the music waiting for his favorite part at the end. "Wooooo!" and he slides at of his chair on purpose to the last note of the music. It sounds like a sound effect that would be added when someone slips on a banana peel.

"Rabby! Rabby!" He squeaks when the George video is over.
"Cranky?" I ask
"Cranky!"
"OK, this is the last video before we eat. After this one we are all done with videos." I explain before I start it so he will know what to expect, even if he isn't happy with it.

"Dun da dah. Dun da dah dah! Eat my chicken! Eat my chicken!" Obviously I need to watch more Thomas and Friends or judging how he barely ate anything, especially not his chicken (it wasn't breaded and reformed into nugget shape, therefore unfit for consumption), I need to eat his chicken for him.

Old man grocery shopping

This an Email I recieved from a friend today. It reminded me of experiences in the store with Connor, except I could laugh about it.

An old gentleman was grocery shopping with his grandson. The toddler was crying and at times screaming at the top of his lungs.

As the old gentleman walked up and down the aisles, people could hear him speaking in a soft voice...
"We are almost done, Albert...
Try not to cry, Albert...
Life will get better, Albert..."

As he approached the checkout stand, He carefully brushed the toddler's tears from his eyes and said again, "Try not to cry, Albert...We will be home soon, Albert..."

As he was paying the cashier, the toddler continued to cry as a young woman in line behind him said, "Sir, I think it is wonderful how sweet you are being to your little Albert."

The old gentleman blinked his eyes a couple of times before saying.
"My grandson's name is John... I'm Albert."

Bad, bad Mama!

There had been so many things within the last week I had wanted to share and had not found the time to do so. Looking back all I can say is I have not been on my A game. I believe it had all started shortly after I made my last post on the 14th.

I answer the phone to hear...
"Mom, I've done something really stupid."
"What did you do honey?" I was really afraid to ask.
"I had a safety pin in my mouth while I was talking and swallowed it."
"How the fuck did you manage that?!" <----Bad Mama!
" I didn't mean to."
"I know sweety, I'm sorry. Was it open or closed?"

Thank goodness it was closed and after a few calls I found out we would have to wait for it to make it's grand reappearance. I did go pick her up early however because I could tell she was on the verge of tears from embarrassment.

A few days later, after I had taken the girls to school, I discover Connor has a low grade fever and can't go to school. He is tired not feeling well and will barely move from his bed when hubby answers the phone. My sister was calling to make sure we know that Melody's school is on lock down. I turn on the news to find out a girl reported seeing a male talking to two other young males in the cafeteria and he made a gesture that suggested he may have a gun.

Full panic! I want to go retrieve my daughter right now before some lunatic goes on a shooting spree! My hubby has to explain to me that lock down means I can get nowhere near the school much less get to her, even though I know this, I feel an exception should be made. I want to call her but she has very little units left on her cell. <--Bad Mama! So I decide to text her instead. I get no response. I find out later that this is the day she forgets her cell at home.

I do get information while I wait from my cousin who is a senior at the same school. He calls another of my cousins, who then calls my sister, who then calls me. They are all in their classrooms with the doors locked, lights out, and on the floor in the far corner of the room. I can only imagine how scared my baby must be and I break into fresh tears, again.

I let guilt get the best of me as I see swarms of parents wait outside the police barriers. I can't go. Hubby has went to work, Connor is sick and shouldn't be out in the cold like that. Even if he wasn't sick he is 3 1/2 and autistic, he isn't going to just stand there and behave. No there would be much running, kicking, screaming, scratching, and lying about on the ground. A police barrier isn't the place for a young child anyway. It also occurs to me that after the scene we would cause I may find myself questioned by police and the new subject of a social worker investigation.

They finally give the all clear and Hubby picks Melody up at the normal time, because some 250 parents were in front of him in line. The male seen that morning was from another school and did have a gun but had left shortly after being spotted. He was picked up by police later that day in a stolen car.

The next day I take Connor to the doctor. The trip there is a post in itself. He has a double ear infection. As we are leaving at around 10:10 Melody calls and asks "Mom, are you ready to pick me up?"
"Why do I need to pick you up right now?" I begin to feel nervous that they are having a repeat of the day before.
"They released school early because an ice storm is coming."
"I'm just leaving the Dr's office I'll be there as fast as I can."

Grace's school was nice enough to send teacher's out to the parking lot with walkie talkies to announce the name of the student when the parent showed up. Saving the kids from freezing their rears off. Melody's school however, the same one that protected her so diligently the day before, tossed the students out in to the ice and snow. I picked up one very pink, cold, annoyed teenager. Well at least she was only flash frozen.