Catch up ...

So this will be a massive catch up and then I will try and be better about updating as much as possible!

Lets see -

Taylor is still in speech and OT - We go twice a week for a total of 4 hours...

Speech - I AM PROUD TO SAY - Taylor is caught up :) We will still attend speech, because Taylor still needs help coming out of her shell and expressing herself. A HUGE thank you to Mary Beth who has stood by Taylor and helped her overcome a lot in such a short amount of time. :)

OT - Taylor is doing great with fine motor activities, still working on her attention and getting her to focus for longer periods of time. :)

Taylor has been challenging this last week - She has had some of her extreme behaviors and I can only wonder if all of this is the "calm" before the storm. None the less, even though I joke about sending her away to boarding school... we love her and I am thankful she keeps our lives full of surprise :)

There ya go Mass overload but I will try and get on here and write a post regarding some issues we are having tomorrow :)

have a great night!

Challenge Accepted.

I was challenged to sit down and write out all of my feelings and frustrations of being a mother of an Autistic Child. Challenge Accepted ( 2 months later)

When we were given the "unofficial" ( I use that because only a Dev. Pediatrician can give us an official diagnosis) diagnosis of Taylor's Autism Spectrum Disorder, I cringed. I was already crying but the extreme anger I felt made me cringe - in fact I am not a violent person, but I wanted to slam things and punch the wall. It was kind of the "damn it" moment if I may. To this day, I have not come to terms with it and I still hold out hope that the Dev. Pediatrician will tell us otherwise when we see him in July. 

I get it, I hear ya, "Janine, just accept it and move on" - Point is I can not, not yet - if ever. Taylor was born at 31 weeks due to pre-eclampysia. I have not yet gotten over this and when I do I will be shouting it from the rooftops. Taylor being my first daughter and myself being only 20 realized real quick when they rushed her out of the OR that this was not going to be an easy ride, Seeing my daughter in a box caused extreme hatred <---- there I SAID it, HATRED. 

Unless you have ever had a baby in a box, do not even begin to try and analyze that Hatred. I hate all of the evaluations, I hate hearing how far behind she is, I hate when no one can tell me when this "nightmare" will be over, I hate that she will randomly refuse to speak, eat, or drink, I hate that she has extreme meltdowns and tries to hurt herself and me, and I hate that everyone keeps telling me not to worry about her. 

I also envy every "normal" kids parents - and I am one of them. I hate that there is no normal... You see this hatred started 3 years ago. When I had Taylor and all the other mom's got to enjoy having their children in the room with them, I had to take a trip down hallways and through doors just to get to my baby, I had to come home without my daughter, I had to stare into an empty bassinet for 6 weeks waiting for the Dr. to release her. 

I hate that my father was not there to hold his daughter and for me to take a picture for her baby book, I hate that if he would not have died 2 weeks prior there would have been a chance I could have carried her a little bit longer, I hate that I had to put Mum through pain again I just am full of hate. 

One thing is for certain, I love Taylor Ann with all of the love a "normal" if not more Mommy does. I know the meaning of sacrifice better than most, I understand that to better the lives of my children that means sacrifice. 

So Autism? It sucks, I hate it and I wish that I did not have to face the giants of the Autism world, and the stares and rude remarks from people in the grocery store? Ya, you... I was you once, I rolled my eyes when I heard a kid screaming - Now I apologize and feel sorry that you can not understand that children will be children.... I will try hard to calm my child, but know that once Taylor enter's into a meltdown there is little to nothing I can do - So if you make a rude remark, be prepared to be embarrassed after. 

There - ya - go.

Hug your children tight and always tuck them in tight at night!

Update

Yesterday as most of you know we went to Taylor's three year well check - Let me give you a run down on the leading up to this appointment...

When Taylor was born I was not sure she was going to live to see the world nor did I think she would live much past 24 hours, in fact something that I do not share with many people is that I was scared my daughter would die before I could hold her for the first time. But little did we know that Taylor would surprise everyone and just 6 short weeks after she was born she would be coming home...

Her one year appointment was brought with a few tears, mainly because I was sad that her "baby" years went by so fast - but also because as we sat in the waiting room another one year old little boy was walking and talking up a storm, Taylor was sitting on the floor, completely silent. When we got back into the room to have her check up, the Dr asked me if I had heard of early intervention services, I replied a very firm no and told him I was not interested and finished the appointment and never looked back.

At 18 months, when Taylor was still not walking or talking I started to get concerned, I would like to stop and thank Tasha, without her emotional support I would not have picked up the phone and requested services for Taylor. Now, A lot of you Mom's with Kids who have little to no problems, you have made it clear you would have taken the Dr. up on his offer at 12 months, I did not want to - I do not know why I did not want to I just did not, so stop judging me.

The point is at her 18 month check up they screened her for Autism, she scored positive but not enough to raise enough concern and at that time I was just focused on getting through Nick being in Korea. When Taylor was diagnosed with Seizures just a short 2 months later, I knew that something was different and that the road that we were on was full of challenges.

Now, lets get up to speed to the last couple of months, Taylor has had extreme behaviors - I mean extreme - and any mom that say's to me well my kid does that too - Seriously go have them evaluated. Banging her head into the wall, kicking, screaming, throwing things, breaking things, you name it I have had it happen in the last couple of months.

You can all sit back and say kids do things at their own pace, but when a Dr. tells you your daughter is functioning at 18 months and SHE is THREE... Ya you start to wonder.

So, yesterday we brought her in - I should have known it was going to be rough from the moment the receptionist handed me the communication paper to fill out and I had to answer No, to several of the questions. I also should have known that when Taylor threw a fit because she did not want to stand on the scale that something bigger and out of my control was about to happen - I mean her whole life before something "bad" happens we have had "signs" if you will that lead up to it.

When we got into the room, FINALLY - Tay seemed okay, I mean what kid does not like it when someone hands them stickers and lets them go to town? The minute the thermometer was brought out that was all she wrote, and honestly between Addyson saying over and over " want to get down" and Taylor freaking out - I am surprised the Dr. did not run out of the room - surprisingly he just smiled and said here let me take Tay here let Addyson down and lets talk calmly ...

I thought I was good - I thought I had my emotions in check, but when he asked how we were doing I lost it - then spilled out Taylor's behavior's and my fear that her therapists were right, she needed an evaluation for Autism and she needed it NOW. A few clicks on the computer and a piece of paper later *that I filled out* We had it - not an extensive evaluation but enough to send her straight to a dev. pediatrician. She scored positive and worse than when she was 18 months. She scored critical in 4 areas - FOUR.

Nothing could have prepared him for agreeing with my fears. NOTHING.

Yesterday I was crushed, I was absolutely crushed but with the help of friends who have special needs children they picked me up - and still are. For that I am thankful. I am also thankful for my friends with normal kids that they have not taken off yet - that they still allow their children to play with Taylor. I need that sense of Normal right now - So if I seem a little off for the next couple of weeks, and I snap at you or lose it or choose not to talk to you about everything it is because I need to process it with my family and few very few select friends.

I hate the word Sorry - I know it is a natural response to anything - I hate it. You can say it and I will smile and rattle off something a long the lines of its okay nothing you did, nothing anyone did.

Crazy how the last three years have prepared me for this moment, but none could have really prepared me - if that makes sense.

So hug your babies close - I know for now that is all I can do - is be thankful she is Alive and Healthy. She is living with Autism and not suffering from it :)

She is only 3.

So this morning while browsing Facebook I came across this picture about a three year old... and I realized, I do not let Taylor really just be a kid... I am so focused on her meeting goals, meeting milestones, that I forget some times the best learning is that of just playing... We are in no where as strict as some parents,  I mean my children jump on the couch, ground, beds - really just about anything they can... Not once have I gotten on to them for it... in fact the way Taylor learned how to jump 2 years late is all thanks to the couch. :)

I challenge everyone to just let their children be children - they can not sit still for as long as we can, sometimes eating spaghetti with their fingers is the best way - Now I am not saying do not have rules, but before you set them make sure you remember, they are only children once!

Have a great day with your munchkins - remember only a child once. ;)

44:52

Yesterday as most of you know, I ran my first 5k ever, for Taylor. It benefited Autism research and I knew that if Tay could go for the last three years that surely I could run 3miles...

I went in with the goal of 45 mins - I finished as noted in the title at 44:52 - I was good until we got to the halfway point when I realized that my daughter struggles more in one day then I was in 45 mins... I ran my heart out for her - I cried tears of sadness, guilt, and anger as I pounded off miles... I was surprised with myself as to what I accomplished.

Taylor, you have such an amazing support system behind you and mommy did not even realize it until yesterday!

Thank you Team Taylor for suffering with me!! :)

You all rock!
<3

Three years has gone so fast.

As I type this I am brought to tears. Three years ago I got to hold Taylor for the very first time. Yes, you read that right - 7 days after she was born I finally got to hold my baby girl. A lot has happened in three years, that I all to often forget about because I am so focused on the bad.

Taylor learned to walk.

Taylor said her first word - Uh Oh

Taylor made her first friend

Taylor learned how to climb and Jump

Taylor went down a slide without screaming

So much more has happened... She turned into a big sister and filled the role amazing. She helped mommy through the last 8 months of Nick's tour in Korea.

She knows just when mommy needs a hug, a smile, or even just a kiss.

On that note - it was almost a year ago that we were told of her diagnosis of Autism spectrum disorder, I remember sitting in the dr's office - Crying, uncontrollable crying. Taylor was laughing - Yup you saw that right she was laughing... I think it was that moment that I realized so what if the only thing that is wrong with her is Autism... We made it this far and proved people wrong lets do it again...

There is a lot to Autism that people do not understand, please educate yourselves before you make comments... I am an open person as well and will tell you anything you want to know.

Have a great day with your kiddo's I think I am going to go and hold my baby girl for the first time this morning. <3

Dear Taylor.

Dear Taylor,

Three years ago you blessed us with your appearance - a little early but you showed us what unconditional love was and that despite all the challenges to never give up. I will never forget the first time that I got to hold you - you snuggled and even let out a small cry - and being able to comfort you was the greatest feeling in the whole entire world. Each and every milestone and goal that you accomplish makes Daddy and I very proud. You have turned into an amazing big sister and an even more amazing daughter. You have taught both of us patience and perseverance. You have never given up on any challenge that has been thrown your way instead you worked harder than ever to achieve it and master it.

We can not express enough how grateful we are for you and all that you have given to us. You made us a family, you allowed me to see through your eyes when you were diagnosed with Autism and again when you needed glasses. We we will always be by your side no matter what. Now tomorrow, as we prove those doctors all wrong and you wake us up at 6 am, I may cry some tears and its okay Mommy is not sad she is grateful that our miracle baby is alive and well.

Taylor, Keep defying the odds, keep smiling and Please please remember that we love you more than you will ever know.

Love,

Mommy, Daddy, and Addyson.