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.