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.