Stickers on the window

Four years ago today - I had just finished putting up my Christmas tree - complete with lights and ornaments, deep cleaning my house with a toothbrush (well not really - but sort of) - and settling in for the night.

I remember waking up around 2am with this tightening in my stomach - and I knew - Alexis was coming for sure.

The promise of a new life - this little girl - she was going to change everything. I had no idea just how much her life was going to impact me, my plans - and my thoughts about the world.

She was born at 6:10pm - after a battle with an oxygen mask - and a certain anesthesiologist who didn't get into the room until 5:45 (I would still like to hunt him down and slap him across the face).

Matt & I had so many dreams - ideas & hopes for this new litle 7 pound person. I was so afraid that I was going to drop her - and when they finally sent us home - we were absolutely terrified.

Alexis was not an easy baby. She cried a lot. She didn't want to sleep. Alas - she was still hitting all of her milestones - and we wrote it off as a difficult baby....just one of those deals.

I remember so clearly hearing her first word - "doggie". We were at a rest stop in South Carolina - on a trip to see my Grandmother.
She was 10 months old, and she spotted a black lab across the parking lot. Her face lit up - she started clapping - and out came - "doggie!! doggie!!". Undoubtably - one of the cutest things I have ever seen (Though I may be biased).

Alexis continued to grow - talk - interact - laugh - play -etc. Until the day she stopped.
I was in a heap of denial that there could possibly be anything wrong with my perfect baby girl.

After a few months of fighting with Matt - I conceeded to have her checked for developmental delays. Over multiple appointments and evaluations - I heard the words that no parent ever wants to hear. "Your child has autism".

My world shattered - my heart broke - I couldn't believe it - I wouldn't believe it - and I certainly wouldn't accept it.

At 15 months old - she stopped talking. She didn't laugh - and she acted as if she didn't know me. How could she not know me? I am "Ma-Ma" - she had called me "Ma-Ma" when she turned 1. How could she not know I was in the room? Why didn't she want to hug me?

I turned to a life of addiction to blot out the pain I was feeling. I needed anxiety medication. I needed anti-deppressants - I needed sleep aids. I needed a stiff drink - a cigarette - something to take me out of my reality. I had to blot it out - my heart couldn't take it anymore.

There were and have been so many dark days before the light started to appear again.
So many days of hearing my child scream through countless hours of therapies. So many times of seeing hopeless looks in the eyes of her therapists.
So many days of me not wanting to wake up - not wanting to cry anymore - not wanting to see this little person suffer anymore - questioning my higher power.

I was carrying around so much anger.

When people tell me that I will look back on her early years and want them back - I want to say really awful things to them. I want to tell them that she hasn't had the life of a normal child - and I certainly don't know what it feels like to be a normal mom.

Things started getting better for Alexis when I started down the road of recovery.
When I put down all of the "mood stablizers" for good.  I started practicing yoga on a very regular basis, and most of all -  I developed a real spiritual relationship with my higher power.
 All of these things have slowly led me to a path of strength and acceptance.

I stopped expecting her to be anything like kids her age, and when I started trying my best to be a part of HER world, (and stopped forcing her to be a part of mine).........she started to notice me again.

First she started noticing me, and then she started being excited to see me. Just a smile from her - a laugh for no reason - it started becoming enough for me.

My little girl will be 4 tomorrow - and this is not the life I ever imagined we would live. I am happy to say - it is so much better than I thought it would be when she was first diagnosed.

Alexis loves going to school, and she loves playing on the playground. She has the speech and language of an 18 month old (and yes it still hurts - but not as much since I am learning how to feel my feelings) - but that is so much better than what she had 2-1/2 years ago.
She lights up when she sees her dad - and she gives us little hugs and kisses.

Last weekend - we were riding around town - like we do so much (she get's restless in the house)- and I noticed that she had put stickers all over the window of Matt's car.
Well - you know how men are with their cars.
I was a little terrified that he was going to be upset that she had ruined more of his car.

When I showed Matt the stickers - he got a huge grin on his face. "I am so happy that she is doing something like this!"
That was exactly how I felt. My little girl was just being a kid - and ruining her parent's car with her "artwork". Some of the most beautiful artwork I have ever seen.

For her birthday - we are not going to have a big party - we are not going to invite any kids (not this year anyway). We are going to take her to her favorite place - Monkey Joe's. She has been trying to break into the birthday rooms for a year now - and we are renting one out - just for her.

And instead of focusing on "what's wrong" with Alexis - I am just going to be thankful for her - her sweet little smile - her happy little laugh - the light that has come back on in her eyes - and the joy that she brings me for just being her.

She has truly taught me that life will probably never turn out the way I plan it - force it to be - or will it to be.   Life will go a lot more smoothly if I get out of my own way (and Alexis' way for that matter).

Happy Birthday little Alexis. You have forever changed my life - and so many lives around you.

And then it was D-Day..........

D-Day....The day I now remember as "Diagnosis Day".

It was 2 years ago today that My mother in law, my husband - and I were sitting in a room together with a developmental pediatrician.
I had a double ear infection and strep throat that day - but nothing was more painful than watching Alexis - and knowing that something was wrong.

Things had started to get strange with her in January of 2009. She went from a happy - aware - talking- walking little toddler - to a tantruming, silent, unaware toddler. She lost all her abilities within a 2 week period.

I was in complete denial about the whole thing -and I was angry with my husband for making us go through all this trouble. I just thought - "I know she was talking - she will start again. I know she was developing perfectly - she will snap out of this." Anger at my husband kept me from seeing what was happening in front of my eyes.

"I am going to go ahead and give her the diagnosis of PDD.NOS"

I thought to myself - well - its not autism - thank God!!

Even though the week before, I sat through Alexis' speech evaluation, and was told that she had speech and language of a 6 month year old (this was at 15 months of age).

I think a lot of parents do this - but we had this whole plan where we would do all the biomedical possible - and therapy - and have her cured by 3. We were so sure of it.

Even one year ago today - I was sure she would be totally normal by now.

May 5th of last year we got a new diagnosis "autism spectrum disorder".
I was so sure that he was going to downgrade her from PDD.NOS to "speech delay".
I was in so much denial STILL.

The time between last April and this April - has been full of thunderstorms.....but I would be digressing if I told you that there were no rainbows.

When she turned 3 - things got extra hard for me as her mom. She grew from a toddler to a child this year.
She went from looking not so different from her peers to obviously different.

For parents - to think that one day your child will be made fun of - and or looked at differently - stops your breath - and speeds your heart up so fast that you think it could quite possibly pop out of your chest at any moment.

Heartbreaking - is not a strong enough word.

Her birthday came - and I know that she knew it was a special day, but I know she didn't know it was her special day.

Thanksgiving came and went - We had a very stormy Christmas....thanks to my anger and resentment towards Autism. I just wanted her to wake up on Christmas morning like most children and be excited to open her presents.

Instead - all she wanted to do was spin the ribbons and bows that wrapped her presents.

And it was only after our IEP (special education school placement) experience this year - that I was able to come to a place of healthy acceptance.

We decided to become true advocates for Alexis - and fight hard to get her what she needs.

We have flown from the east coast to the west coast - from south to north - to find ways of helping Alexis.

I am working every day to balance acceptance with our desire to make Alexis better. Without that balance - I would probably have gone insane - lost my marriage - and more by now.

I am happy to say that all of our LOVE for her - and hard work is making a difference. She truly is growing and developing. It isn't the way we planned or expected it to be. It is slow - sometimes beautiful - sometimes painful.

One true thing - we love her - we are different people than we used to be - and a hell of a lot better for it.

Here is more about our story - and a way to help other families like ours.
Thanks for reading.
http://www.firstgiving.com/fundraiser/TACA/donate-to-help-families-with-autism-helping-famili

My turn...

My take today on "my turn, my time" and all of that other "stuff"........


How do you do it? How do you hold it together? How do you find "your time" ?

These are questions that other people ask me on a regular basis when I talk about my daughter, all of the things that are involved in raising her.....and all of the sadness of having a "non-neurotypical" child.

In fact - when I get really screwy in the head - I start asking myself the same questions.

The fact is that she has 6 different therapists - 6 different doctors. She has had 10 vials of blood drawn out of her just this month (last month it was 8)....I have to give her B12 shots every other day, because of her anemia...She gets more testing in a week for mito (hopefully we can cross this off the list as a NO) - we are flying out to LA in 2 weeks to see another new doctor for a SPECT brain scan......and all of those things in the hope to make her feel better.

I am not going to act like it is an easy job to follow her around the house constantly, trying to get her to talk to me - communicate - imitate - give me something kid.
And yes....there are days you can find me with my head down - just trying to breathe in and out - and not get upset, because my own child has just sratched me, hit me, screamed, cried and kicked for 3 hours straight - or pooped all over her clean room and created a mural out of it.


But one thing I have stopped doing is waiting for "my turn". This IS my turn.
To quote a good book that my friend Bill is letting me borrow - "Nothing, absolutely nothing happens in God's world by mistake................unless I accept life completely on life's terms, I cannot be happy. I need to concentrate not so much on what needs to be changed in the world as on what needs to be changed in me and in my attitudes."


Every day I wake up - and it is "showtime". Some days I am livng in a comedy - others a tragedy, and once in a while a romance. There is no way I can think of myself as "on hold" until some sweeping change affects me or cures my daughter.

Matt & I often wonder how our lives would be if we had a "typical" child. Would we be off on fun vacations to Disney - teaching Alexis how to read, playing dress up, going to ballet classes - having playdates?
Or would we still be lost in our own selfishness - out partying until God knows how late - being foolish - and lacking direction in our lives?

I suppose we will never know - and the thing is - it doesn't matter.

Sometimes we both have to fight the temptation to go down the "what if...." path. If I start thinking of how different Alexis is from the other children - and how many experiences she is losing out on, my breathing gets too shallow to be healthy. My heart beats too fast. I have to remind myself..."This is my turn".

Opposite to the pain - we have so much joy and richness in our lives. As a wise woman once said..."When you are hungry, a simple meal is as good as a feast."
Alexis greets us with a smile and a "Hi"! She can say simple words to tell us what she wants. She has a little laugh and a little smile that is absolutely infectious.

When I hold her she sometimes gives me a little kiss (it sounds like a very soft "paaaah") - and it absolutely melts my heart.
When she comes home off the bus, she forgets about the stairs and jumps into my arms.

From a child that didn't even respond to her name a year and a half ago - these things are jewels to me - and make my heart skip a beat.

I feel hopeful that my sometimes paralyzing fears about Alexis' future as a child and an adult will subside - as we see her continue to join our world. Will she live in our home forever - or will she lose her diagnosis and build her own happy adult life?

I don't know.

But I'm learning to trust in God that I'll find the right answers because God has answered so many of my prayers.

This IS my turn.
I am not going to waste it.

Diet Sprite, Photographs and Lawsuits - A mother's vent

"I'm tired of autism"......

This is what I said to my best friend, Autumn this morning as I rounded the corner of my mom's neighborhood. I was trying to take the long way - as to stretch out the car ride a little longer - so I would have more time to chat.

I said it, because I changed the "expected" route to Grandma's house - and my child started screaming bloody murder.
(Demand for sameness - a trait of autism)


I have said it before - but this has been the most exhausting and intense experience in my life.


I stopped blogging for a period of time (November 14th - until today). I experienced a catastrophic rush of emotions on November 18th - and I let those emotions get the better of me in a bad way.

We had our first "IEP" (these are for children with special needs - in order to enter the school system - they evaluate the child and put them in a school setting)

Our placement was horrific - and completely inappropriate for Alexis. They also teamed up on us - 7 to 2....and rushed us through the meeting.

We did not sign the IEP - and they acted as if we were criminals for not doing so.
Little did we know - they did about 25 illegal things in that meeting.

My catastrophe started that day - and I will just say (without too much detail) - that I lost contact with "Bill". (see name of blog)
A horrific 6 week experience followed - and ended with a lot of tears and damage.

Grateful to say that Bill and I are friends again now - going on a month.

We are now pursuing a lawsuit for our daughter to be placed in a proper school setting. It is so shocking that you have to do this sort of thing to get your child into a proper school environment. I am learning way more than I would like to know. Hopefully I can use it to help another family in our situation.


Photographs...

(Yes - this blog is way out there on the tangents)
I began my day this morning by taking pictures of my daughter's poop.
We are working with a world renowned GI doctor - and our holistic doctor here in Atlanta to heal Alexis' gut.

We got all of our blood test results and stool results back, and I went over them with our holistic doctor.
I almost fell our of my chair when he told me that this was the most severe case he has ever worked with.
There are several things wrong with her blood.....and her gut. Everything that came up on the blood tests pointed to gut inflammation - and ulcers in her stomach (more than likely MMR in the gut) - which severely impairs cognitive function.

That being said - I don't care what anyone says about Wakefield - I have met him - and he does everything he does NOW with no profit motive. He only wants to help our kids. Let the smear campaign run.
It gives doctors and scientists with profit motives more time to hide and avoid the causation of all of these new cases of autism.
Many of our children are very sick internally.

My child is very sick - and I am just praying for the serenity to get through this time. We will make her better - and this time will pass.

I am amazed that Alexis is doing as well as she is.
She cries a lot (I believe out of mainly out of pain) - and it is very hard to be around - 24/7.


It is hard to believe what this life has turned into.

Right now - all I can do is drink my diet sprite and wait. Wait for the medications - wait for our trip to NY to see Dr. Krigsman - wait for our meeting with the school system and the lawyers - and Pray that our daughter gets better.

I love diet sprite. Seriously.