Still in the game....if I want to play...

It's a beautiful day so far.

Sitting in the living room - you can see so many beautiful colors outside. Red trees - yellow trees - green....whatever its pretty.

I went to class yesterday morning - not sure if I was even going to continue in "the challenge" - and had an amazing class.
My legs were flat on the floor - and my forehead was almost touching my toes in the final foward bending pose. An undescribable feeling for sure.

I know it sounds really trivial and silly to people who don't practice bikram yoga, but when I first started practicing (it was the end of January this year) - I could barely hook my fingers around my toes - let alone get my legs flat on the floor to attempt bending down!

I have been told - as long as I can pull off a "double" one day next week - I am still in the challenge.
That will be interesting......but I am up for it.

In other news - since I do have a life outside of the 90 minutes I spend in class......

Alexis has become this new little person. I am so greatful for this child that is completely coming back to us! It is so amazing, and it is everything we have been praying for and working for.

The same prayer every single morning...."Dear Lord - please help Alexis get better so that we can help others in our situation".....God is listening....and if she keeps going the way she is....I am going to be busy helping others. :)

To someone with a normal child - I know it would be easy to take for granted all of the things that your kid just learns to do on his or her own.

I know this, because in the first year of Alexis' life, everything came naturally.
She rolled over, smiled, laughed, walked, talked - and it wasn't anything I had to force out of her. These were things she just did, because she wanted to.

Now - I am constantly working with Alexis and teaching her how to talk. For everything she does - there is work involved. It is so frustrating for her (and us)- but she has really started rising to the challenge.

Yesterday - we went to the park, and we taught her how to swing in the swing the right way (not on her stomach - but sitting up). Just to see the happiness and pride in her little face was so amazing.
What a gift.

OK - enough rambling from me this morning.....it is time to get to work.

Day 7 - the challenge is making the time

Ah....

So - I am not even 1 full week into this 30 day bikram challenge - but I am physically and mentally feeling amazing.
I am sleeping great - only craving vegetables and healthy foods (which is weird) - and enjoying the benefits.

In class - I feel like a rubberband - and each stretch and breath feels deeper and more amazing.
The sweat is so cleansing - and it is really just like lying in a sauna for an hour and a half. It is amazing.

Now - the actual challenge - is making this work with my life.
My 2 most important people are Alexis and Matt.

The 6am classes didn't happen this week.....(except on Monday) - On Wednesday, because Matt had to leave really early for work - I ended up going to the 6:30pm.
Today is Friday - and I didn't make it up this morning, because Alexis was up sick at 3am - and I needed the extra sleep.

So - trying to make a 4:30 class on Friday work seems like a challenge to me.

It means sacrificing my family time with Alexis and Matt.
I am just starting to worry that maybe this "challenge" is showing me that I should be a little less self centered?

Sure it is great to challenge your body - and my name is on the top of the sign up list (at the studio)......oooh...there goes my pride......but at what cost am I challenging my family life?

Something to think about - or pray about for a bit.
Matt says he is fine with today...and he will be home in time for me to go.

Am I doing something well deserved for myself by doing this challenge? Or am I being self centered?
I guess only I can answer that question - and time will tell.

Day 5

Well -

Just wanted to write a quick note about day 5 so far (well - it is only 7:22am).

I literally bounced out of bed at 6:30am (Matt had to leave the house by 7:00 to be at a client breakfast - so he was up)
(That's why the picture I posted is a GEEKED out version of me)

I made a super healthy dinner with lots of veggies last night - and went to sleep around 8:00 - after some nice reading and prayer.

Woke up this morning like a ball of energy - and my whole body feels amazing.

I am at my ideal weight (the one I was trying to get to the ENTIRE time I was preparing for the wedding - but couldn't lose 5 lbs) - and feeling great.

Alexis is still sleeping - so I am going to get all her supplements and breakfast ready - and maybe even put on makeup (WOAH!!!) - before we start the day of therapies.....
Speech at 9:30 - Occupational Therapy at 10:15.....Mommy therapy/play until ABA comes at 4:30 - 6:30.

Then I am going to a yoga class at 6:30. (Let's see how energetic I am feeling tonight)

OK.....let's have a Wednesday!

Paying attention for 30 days...

So....

After a year of practicing Bikram yoga - I have decided to do a 30 day challenge.....which means going every day for 30 days.

It doesn't really sound that hard - but I have attemmpted it many times over the past year - and then let life get in the way after a couple days of back to back practice.

As if there is a chance that life won't get in the way this time.....(sarcastic wink)
For me this is about truly meeting my responsibilities to Alexis (all 6 of her therapies, my home therapies for her, organic cooking & supplementation, Matt - being a good wife, My mom, and being present for the rest of my network) - and carving out 90 minutes a day to practice my yoga and meditate. Sounds like a tall order - but I am ready for it.

Saturday was the beginning of the challenge......and I forced myself to go to the 6am class on Monday.
This is something I will have to do on Monday, Wednesday and Friday - in order to be home and present for my family the rest of the day.
It was rough - but by the end of class - it was great.

So - as I begin my 30 day journey - what have I learned so far???

1 - Keep up with the laundry. When you come out of a class like you have jumped into a pool with all your clothes on - every day - let's just say - you don't want that laundry to pile up.

2 - EAT (healthy vitamin packed foods!). I learned that the body needs fuel and proper nutrition yesterday as the room went black about 3 times and I had to sit down.

3 - DRINK (water that is.) Slow down - if not eliminate dehydrating liquids - ex - coffee. I am glad I don't drink alcohol anymore, because that one is a HUGE no no.


Ok - So I have learned that I need to do laundry - eat food - and drink water.
Hmmm.....hopefully more will be revealed as this 30 day challenge passes.....these things seem like no brainers.

Tolerance…Transition and Truth….

Tolerance…Transition and Truth….the 3 T’s of my life right now…


So – what the hell is tolerance and why do I need to have it?

Pretty loaded question – but I will have a shot at it.

A broad definition….. I need tolerance to handle transition and truth.

It started after the middle of July – and my daughter shot up at least an inch – possibly 2.
It started after the middle of July – when I realized she would be 3 in nearly four months – and she looked like a 3-1/2 or 4 year old.

It started after the middle of July – and I started crawling out of a rock with my child and starting going to McDonalds…or Chick-fil-a….or whatever playground or grocery store – and I started noticing children her age.
Moreover – they started noticing her. Their parents started noticing me and her.

Conversations get started between other moms and I. Meanwhile – my child tries to play in her normal way. Which is by herself – and not involving any other children.
It is hard to see these other children her age – and younger – saying “hi” – and my child running away – or ignoring them.
Then there is always “the look” from the parents. I guess “the look” is many things from many people – and I honestly don’t really know what it always means – or perhaps if I am imagining these “looks”.
Because I am self-centered – I always think the look means “What the hell is wrong with your kid. She is so rude – or is there something wrong with her?”.

Today – in fact – we were at the playground, and another mother walked right up to me and asked me how old my child was. (as her child scurried up to Alexis and said “hi! I fall down yesterday! Ouch!” – and Alexis ran the other way).
I told her “2”, and she was very excited. “My child is 2! She is soo tall, I always tell people, because I don’t want people to think that she is behind developmentally.”

Pause. Dear self. Don’t slap the woman – or go off on her. Just don’t say anything.

I didn’t.

And then after a few more interactions – I did. “Well – my child has a speech delay. She doesn’t talk.” Other mom: “Well – they all get there!”

I’m thinking – “Really - because we pay about $2,500 a month to ‘get her there’ – can you tell me how this happens?”

I say nothing. Matt comes to me and says….”You gotta start telling people the truth.”

I bite my tongue a lot – and I get my feelings hurt a lot. Even when I do tell the truth. When I do tell the truth I get reactions like people are scared of us – as if their kid might get it too.

I need tolerance to be there for my daughter. To realize that talking – and social interaction are her weaknesses, and it is my job to do what I can to help her build confidence – love her – and work with her.

I need tolerance for these other people, because – how the hell are they supposed to know she has autism?
She looks normal, and I am admittedly partial, but I think she is the prettiest kid around – with her long hair – and huge blue eyes. That little pouty mouth – and her crooked little smile. The way she gets too excited and grabs my arm really hard. I love every part of her.

How are they supposed to react – what is the right way?

This Transition is going to take a hell of a lot of tolerance. And there will be more transitions to come.

The only way I can deal with these transitions and kept it together – is going to be….truth.

I have to be honest with people. It takes courage – and again more tolerance (to deal with the reaction) to be so truthful.

But – it has to happen.

And tolerance doesn’t mean…”Oh – I am up here on level – whatever – and you are down there. I tolerate you.” Oh hell no. TO ME It means….”I understand you don’t have all the facts – or perhaps you don’t know what to say or how to react. Perhaps even that you are not spiritually so fit at the moment” - whatever….It is me not getting upset over them.

My new favorite quote right now is…..”If you are walking through hell…keep walking” – Winston Churchill.

I won’t let self pity – take me there or get me down – but I won’t lie and say this is easy = or that it is something different than it is.
The only thing I can do is “keep walking” – and pray that God give me the strength and the grace to walk tall and truthfully. Now – and into the next transition.

911 Call: Mom Didn’t Want Autistic Kids

911 Call: Mom Didn’t Want Autistic Kids

Wow. This is just so hard to believe.

I have a 2-1/2 year old with autism, and it has changed my life completely. It is also one of the hardest things I have ever dealt with - even harder than losing my father at 18.

But no matter how difficult things get - I can always trust God - and know that there is a plan for everything.
It brings tears to my eyes to think of ever harming my baby girl. She is my world - and has taught me more life lessons than I could ever learn on my own. She continues to teach me lessons - and to turn to God.

I just had to share this - because I know that it is so hard to raise these children - but there is always hope! Always! Never a reason to give up on our kids.

Saying prayers that someone is looking after these babies in Heaven.

Are we there yet?

Doesn't it always feel like we are moving toward some kind of goal - or aspiration in life? (Well - I do - and if I didn't - I would probably be bored to death).

And in that movement - it seems like life can bring us things that change our goals - our aspirations - and our values in life.

If I looked at the picture of my life now - 5 years ago (or even 2 years ago) - I think I would have fallen out of whatever chair I might have been sitting in.

A life that used to be filled with worrying about how much I was going to sell each month - how much commission was in each deal - my things - my car - going out and partying until sun-up on the weekends....who I would go with and where....

But really it all felt difficult and stressful at the time. For real?? Yes - for real. But when you are in your own life and in your own head - doesn't it always feel like you are in the most stressful situation possible??

I feel like I am learning a new way to live my life - and it feels a lot better.

Maybe it has something to do with being "in my 30's" - and more settled - or maybe it has to do with the ability - and constant need to surrender. To understand that there are things - people - places - attitudes - laws - and most of all - circumstances that I have no control over.

Life is a lot better that way - for me.

Yet I am still feeling like - "When is Alexis going to get better?" - "How many more trips do we have to take?" - "Is she ever going to talk?" - and "What about me? Will I have a career again?.....do I want one?? ;)"
It just feels like I am always going somewhere or doing something for her - or for the betterment of "the familiy".

Who ever thought that I would have my own "family" ?

Making money - Partying - drinking - and forgetting my name and address frequently was really all I cared about. What was the goal or aspiration there?

So I really have no idea of what the point of this blog is - and I know it is all over the place.......but even though life is hectic - the future is unknown for Alexis - we just completed our 3rd trip to Jacksonvile for medical care - and we have another one on the 25th (of this month....urgh...) - I am more at peace than I have ever been.

I love my crazy princess - my sweet dog - and Matt - and even myself - more than I ever thought I could.
I am just so thankful for all of the friends I have that have stuck with me - through my insanity - and continue to stick with me.

Are we there yet? Maybe we will never get there......but I am going to try like hell - wherever I am going.

Goodnight!

Dear Life....I'm all in.

It has been a while since I posted anything.

Believe me - I have had times where I thought - "Oh wow - that is totally a blog post" - and by the time I get to my computer, I either lost the thought or decided that maybe it totally wasn't a blog post.

This adventure with Alexis teaches me more every day.
I mean - I am not a patient person. I pretty much want everything now or yesterday.
When you have a child with developmental delays and a "diagnosis" - you can push them all you want, but usually that leads to frustration and dissapointment.


When Alexis first recieved her autism diagnosis - and I started to read stuff I found on the internet - and I became a nutcase zealot. I was here to tell you probably some off the wall stuff - "snake oil" stuff - and I wasn't educated. I hadn't talked to other parents (especially parents of children who had lost their diagnosis - or who were smack in the middle of hell with their kids) - or sought help from her therapists.

I just knew that something broke my kid - and I was mad as hell. This also drove me to drink like a nutcase zealot - but that's where my friendship with Bill comes in, and a totally different blog altogether.

It took me a long time - and a lot of talking to Mom's who were much more experienced than me to realize that I needed to spend my time and effort being a positive and loving and devoted mother - and to hell what everyone thinks about ABA vs Floortime (behavioral techniques) - Therapists in home our out of home - vaccinations, biomedical detox - or anything else we do or don't do.

We do what works for her - and for our family (because it truly is hard to be a family through all of the sleepless nights - insane behavior and fear of the future - and uncertainty of her prognosis).
I try to keep my mouth shut - because if I tell people what I think caused the autism - or what we are doing now - they think or tell me I am crazy.
(I guess a blog post isn't the best way of keeping my mouth shut)

I trust other parents who are much further down the road than us. I try to listen to everything - and take away from it what I can for Alexis' sake.


I have spent the last 2 weeks in Jacksonville Beach (well we had about a 4 day break in between week long trips) - with Alexis.

We have been seeing a holistic allergy specialist (it is actually called NAET - and was recommended by our speech therapist who has also been treated for her life long allergies) - and these treatments are working for our girl. Behaviors that she had (and I won't get into it, beacause some of them are to weird to post) - were gone after we treated her for the basic allergies.

We still have another 2 or 3 trips remaining for treatments.

We are spending a lot of money and time on her. I thank GOD every day that we do have the money and time for her.

I hate to say this - but the autism rates are increasing and not decreasing. 1 in 91 is too many (1 in 57 for boys) - and no one knows what causes it.
I don't claim to know either. I am just trying to help my kid - and any other parent that seeks my help or advice.

I just don't know what is going to happen when all of these children grow up - and their parents die - and they have to be supported by the taxpayers.

Again - that's me being angry and resentful towards the media - government and pharm companies for only showing 1 side. If this isn't a health crisis - I don't know what is.

Anyway - back to the title of my blog - and the reason I wanted to write today.

I woke up this morning to my husband (who works his tail off so we can get by and pay for all of the medical neccesities for Alexis) - and to my daughter.
She ran up to me and said "hi" - and gave me lots of hugs.
A year ago she wouldn't have noticed me in her room - definitely wouldn't have made a peep - and for sure not hugged me.

We have been working so hard for her. And because so little is known about Autism - and why all these children are getting it - I can't claim to know anything except that what we are doing is working. She says "Daddy". She says "Hi". She initiates play with us. She is way behind - but she keeps getting better.

Matt texted me while I was in Jacksonville - and he had just transferred a chunk of money into my account to pay for more treatments......and he said "I'm all in with this kid".

Well - I'm all in too. My resentments - my anger - and my negativity will slow things down - or get in our way.

It feels good to be all in and realize that it's not all about me anymore.

It's a "you" thing....not a me thing....

Ya know....my last blog was pretty pissy.

So I will keep this short and simple.

To all of the "you's" in my last blog - that is where it should have stayed - not in my heart - and certainly not on my blog! BUT - within the "you"'s out there. That is your cross to bear and certainly not mine.

Even though my ego let's my feelings get hurt - I do have to remember that that is my ego getting in the WAY - and I truly need to let go of the "victim" role.

Bill and his friends have taught me that when my feelings get hurt by other people's judgements of me - especially when they are unjustified - and out of whatever is in their heart (perhaps anger - resentment - jealously - WHO KNOWS????)........

That is truly a "you" thing - not a "me" thing.

The only thing I can do is try to be the best person possible - live gracefully & peacefully - and most of all bite my tougue - even though I feel as though it might cut the inside of my mouth.

OK God - open eyes - open ears....open heart........tell me where to start!!!!!!

Who died and appointed you to judge me?

Last time I checked - that is GOD's job.

Life is filled with judgement from people in our lives.

And I apologize in advance, because I am the FIRST to admit that I am writing this from a place of frustration and total outrage - due to events occuring in the past couple of weeks.

The thing is - some of you really need to re-examine the sharpness of your tounges - the looseness of your lips - and from the place which you come......last time I checked - none of you are GOD.

The hardest thing is - that no one can truly walk in your shoes - no one can truly know your heart - and your intentions.

I know what the word "Blog" means (WeB Log). But today I am going to re-define it as "Blowing Loads Of Gross" - out of my mind and onto a web page.

#1 - When I say that my kid is autistic and really hard to deal with - a lot of people don't REALLY understand what that means. A lot of people think I am being overly dramatic and exagerating about her behavior.

Well - you are cordially invited to spend a weekend with her at my house and listen to at least 24 hours of whining (that means 12 hours per day).

You are also invited to sit through 6 different therapy sessions a week for her - and hear her scream half the time.

Oh - and I can't forget to invite you to all the doctor's appointments - and specialists who tell us that she's "fine" - or even worse - "here is another specialist - go see them now"

People - it will make you - coooookalooooo - forget to eat (and then eat Brusters for dinner) - forget to take care of yourself and possibly go insane altogether.


#2 - You may also not approve of my decision to vaccinate according to the AMA's schedule - and to never again give my child a flu shot.
Please refer back to #1 - and try walking in my shoes.

#3 - No one has the right to judge me and my family on how we spend our money on ourselves or our daughter. Even if you are related to us - you really don't know how much we make - and how much we spend on our daughter's medical care.


#4 - On the subject of me being "too skinny" - well those of you who are so "worried" (which by the way I think is total BS. You aren't worried nor do you care abour me). I do the best I can - and I am 134 pounds. Last time I checked - that was far from anorexic.
On the same note - if you are truly concerned for me then why the hell don't you just talk to me? My husband is the wrong person to have the conversation with.
How would you like it if I went up to your husband and expressed my "concern" for the fact that you look like you ate an entire stuffed turkey for lunch?

#5- My sincere aplogies to anyone reading this who has done none of the above - and my sincere thank-you's to those who are supportive and loving to me and my family.

The end.

Which hat to wear?

There are so many hats that you have to wear as a parent.

There were a lot of hats that I never tried on before I became a mother - and a lot of "hats" given to me that I just knew I would never have to wear after becoming a mommy.

Well - those hats I didn't want to wear have slowly all come out - and are swimming around my head with great fury right now.

Hat 1 - Give up the career - the business suits - the ability to shop and buy whatever - and wear the "stay at home mom" hat.

Hat 2 - Be the mother of a child with Autism.

Hat 3 - Do your best to raise your child with Autism, and realize that very little is known about what causes this disorder - and truly understand that it is every man for himself out there.

Hat 4 - Mother Warrior - Advocate to get services for my daughter - don't take no for an answer - fill out extensive forms and go through whatever it takes to make her FEEL better.

Hat 5 - Wife. Deal with complicated in-laws - mixing of religion and non religion - closed minded-ness - and open mouth-ness - all on oposing sides. Learning that I do have definitive BOUNDARIES. Try to put Husband at ease about home life - and try not to break down crying when he calls to tell you how hard HIS day has been out there making a living for the family.
Put my needs and wants on a lower level and trust that God will give me what I need to survive if I just come to him and ask.

Hat 6 - Understanding that people in the medical profession are PRACTICING MEDICINE. If I want to get to the root of the problem with my child's health - there may be alternate twists and turns - heartbreaks - and always a small sense of failure mixed with victory.

Hat 7 - Zombie - Tired - No makeup or sleep Mommy. Confused - sad - and sometimes depressed & worried about the future for my child.

Hat 8 - WHAT ABOUT ME Hat. Guess what - it's not all about you anymore mommy.

Hat 9 - Even though its not all about me - ask for help to do something nice for myself - bikram yoga - nails - hair - a mini-break.

Hat 10 - Therapist. When you have a child with this disorder - there are so many "methods" - it can be so confusing to know what to do. Trust a therapist with experience and who gives you the most hope and direction for your child and then practice those things.

Hat 11 - A "friend" of Jenny McCarthy - who is not against vaccines, but believes there are harmful preservatives in them - and they should be spaced out - and not given so many at once. An organic gluten free - soy free - wheat free - casien free guru - the master of label reading - and "eating in".

Hat 12 - A "friend" of Bill W. Accepting who I am and that I am human. The only way I can get through things is when I truly ask my Higher Power for help. That is the only way for me. Ask for guidance - seek out fellowship - share - love - and accept love.

I am sure there are many more hats to come - and hopefully some hats that will go. The only thing I know for sure in my heart is....."Those who will be saved - will have faith until the very end" (Oh yeah - I didn't come up with that one...that was another "friend" of mine.)

Ya know what??

I think I am having a burst of anger or insanity - because you know what??

Everything I just wrote in the blog below is just a nice - tip toe - flowery - way of saying....

WHY CAN'T ADULTS ACT LIKE ADULTS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!????????????????

AND IF YOU LIVE IN A GLASS HOUSE DON'T THROW STONES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Ok - I am done.

Letting go of my expectations gracefully

Well - I had fully intended upon writing this blog before Alexis' surgery.

I am keeping my original title - because it still does hold true in my experience over the past week and a half.

It all started when 2 weeks ago (the day I was going to write this) - I decided to go to a Bikram class ( http://bikramyogadecatur.com ) at 6am - instead of my usual evening class.

Well - it was awful. I couldn't do any poses - my knees wouldn't lock - I was falling out of posture - plain old falling - and through the class you are really supposed to be able to LET GO of your last posture and move into the next with no expectations. I couldn't do it!!
Every day is different when you come to Bikram. You can leave feeling like a superstar - or you can leave feeling like you would like to stop at every McDonalds on the way home and then walk through a car wash. Seriously.

Not realizing that I was having trouble "letting go" - I went about my day and my business.

My daughter had surgery the next morning - AND my inlaws were coming in town that afternoon.
I EXPECTED that Alexis would sleep OK - as she did in previous nights. Unfortunately - she got up at 1am - screaming - and never went back to sleep.

Riding up the highway going 80 to a surgery for your daughter and blasting Children's Music to drown out screaming (that has been ongoing for 5 hours) - while you earnestly try not to cuss out or snap at your husband is not a good place to be.

We were pleased that the surgery went well - and exhausted - but she was in great spirits. I EXPECTED that this was because she immediately felt better. Actually it was because the laughing gas hadn't worn off yet. After her nap - the insanity began.

While she was sleeping - Matt went to get his parents.

My insanity began in my own head. "Is she OK? Is she ever going to be quiet? Do I need to go get some wine to calm down from this, because I am totally helpless here"

Luckily - I called someone who was able to guide me down the right path.....which was call Matt and be honest about where you are.

He rescued me - and I fell asleep at 7pm. It was awesome.

The week went on - Alexis was getting better by the day - but I wasn't.

My expectations of marriage - family - friendship - and loyalty all crumbled that week.

There were quarrels - crying - betrayal and hurt feelings all over the place....and none of them were coming from Alexis. She kept improving! It was all the ADULTS!!!!!!!!

A trusted friend of mine told me that sometimes God strips us down so that we can go buy a few nicer things for ourselves that fit better and aren't outdated (she knows how much I love shopping).
Well if that is true - I was in dire need of driving over to Lenox Mall and getting a whole new wardrobe immediately.

My expectations of a fun family week turned into dirt - and it turned into a week of self pity - anger - and frustration from all parties. No matter who was supposedly "causing" those feelings - I still had to take responsibility for mine and change them.

The only thing that gave me peace was my support system and those trusted people in my network of friends. I couldn't ask God for better people in mu life.

So......I think I grew a little closer to Bill this week than Jenny - but hopefully - the stregth I gained this week (if only by surviving) will help me help me balance both relationships!!!

And so it has been 1 year......

So it has been a year…..

April 16, 2009……..

The events leading up to this day were not easy.

On March 23rd, (I only remember that day because it is my sister, Anna’s, birthday) – we took Alexis for her 15 month check up.
Matt and I had been fighting constantly for weeks, because he was sure there was something wrong with our child, because she had not made a sound in nearly 3 months….wasn’t responding to her name, and would not turn to her name when we called her.

These were all things she had been doing up until shortly after her 12 month checkup.

I argued with Matt that obviously, she was mastering other skills, such as climbing – and exploring, and that perhaps this had slowed her language.
Deep down inside, I knew I was wrong, but I wanted to be right so bad.

We asked the doctor to screen her for delays, and she pulled out a checklist (I guess it is standard that all kids are to go down this checklist at 24 months).
I allowed Matt to answer most of the questions.

The doctor seemed very uneasy – and then she handed us a few referral slips for speech therapists – and a developmental pediatrician.

That evening – after we got home, we both sat at the kitchen table and cried profusely. We officially knew there was something wrong with our daughter.

The morning of the speech evaluation was the following week. I went in with so much hope – that the speech therapist would simply tell us she was a little behind. After the evaluation – she told us that Alexis was at the level of a 6 month old for speech and language.

What happened to the way she used to scream “doggie!!” when she saw a dog – or Kona?
What happened to her saying “bye bye” – and “hi!”? Where did “mama” and “dada” go?

She looked at me as if I was crazy and perhaps if I had imagined these things. I have it on video – my sisters saw – Matt saw – I have witnesses.

She asked me if there had been a “trigger” – perhaps a high fever? I said…..no fever – just very sick after her 12 month checkup – vomiting – we had had to take her to the ER – but that was all. Oh – and we had started giving her regular milk in the process as well.

I went home and googled “autism and milk”. At this point, I was unwilling to say the word “autism” – out loud…..but I already knew.
I learned about how some children with autism respond better to outside stimuli when you safely remove all dairy, wheat, gluten & casein from their diet. I read more and more – I discovered that a DAN! (defeat autism now) doctor could help us put her on herbal supplements that could also help her.

We immediately started the diet (I mean – I drove to Kroger at 11pm to buy whatever I could that was gluten, wheat, dairy & casein free THAT NIGHT!!).

The next step was the hearing evaluation.
I remember before the evaluation – I got down on my knees and prayed so hard that she had just gone deaf! We could deal with deaf! We couldn’t deal with the “A” word.

Her test was normal.

The following Monday – my favorite person in the whole world (and I mean this from the bottom of my soul – other grandchildren – if you are reading this – please back me up!!) – My Grandma Anabel Smith – passed away.
I was devastated that she was gone – and I had been so wrapped up with Alexis – that I hadn’t gotten to tell her goodbye. I hadn’t even called her.

Monday – heard the news about my Grandmother – Wednesday was April 16th, and it was our time to see Dr. Rubin – the Developmental Pediatrician who could give a proper diagnosis. (There are only 5 doctors like him in Georgia – and if you want to see him quickly – you have to pay $1,000 and file your own insurance – otherwise – you sit on a waiting list for 6 months just to get a diagnosis).

My mother-in-law, Nancy (she is truly an angel) – flew in for the week – as I was going to have to leave on Friday to go on a 6 hour trip with my mom and sisters to my Grandmother’s funeral.
I remember Nancy’s kind and gentle way, and how she brought us comfort during the appointment.

Well – it was diagnosis time. Alexis was diagnosed as PDD.NOS (Pervasive Developmental Disorder – Not Otherwise Specified) – a very nice way of saying Autism.

My heart sank. It was official…..and where were we going to go from there?
Dr. Rubin suggested “Floortime” – getting into “Babies Can’t Wait” (the state run program for disabled children age 0-3), Speech Therapy – Occupational Therapy – and as much one on one time as possible.

We were overwhelmed to say the least – and heartbroken.

Who was this child of mine? Where did she go? Where was the light in her eyes? Where was her smile? What was the future going to hold for her? Would she have to live with us forever??

We didn’t know. And we still don’t know.

It is too hard for me to talk about my Grandmother’s funeral that occurred 3 days after the diagnosis, because it all felt like an out of body experience. It was very traumatic – especially since my sister, Anna, was so sick the morning of the funeral – that she couldn’t even go in – and she couldn’t get out of the car for the graveside service. We had to take her to the hospital because she was so sick.

I broke down and started crying hysterically when they were having the luncheon after the funeral – there were relatives everywhere who wanted to talk to me – Matt called me from 6 hours away - Alexis was screaming in the background – and Matt was asking me if he should take her to the ER – while I was just trying to fix a plate for my mom – and get my sister to the closest hospital.

My cousins were so kind to me – they came and wrapped there arms around me – especially Matthew.
And then to later see Margaret and Nathan –my Uncle Bill and Aunt Patricia at the hospital was so comforting. They were so kind to come.
I still had not told them about the diagnosis. It was a weekend to mourn Grandmother – not Alexis.

I knew on the way home the next day – that Matt & I were facing what seemed like an insurmountable task.
We pushed through – got her into programs, speech, Occupational Therapy – ABA – Floortime – met other parents – hired someone to be at the house for 1 on 1 time during the mornings from 8-12 – and worked with the DAN! Doctor to continue with biomedical treatment for Alexis.

She started signing – she started using her voice and making sounds again – she started communicating! She started getting excited to see us, and she started responding to her name more and more.

It has been one year since this nightmare began……

We are blessed that I am able to stay home with her now, and be with her. It is not easy, but we are so lucky to have found the strength and resources to put together all of this for her.

This journey is far from over – and we don’t know what lies ahead.
She has surgery this Thursday, because she has so much fluid in her middle ear that it has turned to gel. She has basically been hearing as if she is underwater – and there is so much pressure in her head – that she is in constant pain.

The doctor is hopeful that it will make her feel better – and maybe learn to talk. We are not expecting a miracle – just praying for one.

My thinking has changed. I do everything as if she is going to grow out of this and become “typical”. Maybe a little quirky – but typical.
College fund – Savings for her future……and lastly – I made a decision to buy a $2,100 wedding dress for a TINY ceremony Matt & I are having in August – in Destin.
We are only inviting immediate family – so everyone will only get to see it in pictures.

Matt asked me – WHY I was spending that kind of money on my dress, my headpiece and my veil……

My answer? So I can preserve it – and give Alexis the choice (even though she may hate it) – of wearing that dress in her wedding.

I will never give up on my daughter – and I know Matt will never give up.

Thank you for reading this.

April is Autism Awareness month – feel free to pass this story along.


Sincerely,

Sarah