Set backs, Bifocals,& ABA

A lot has been happening in Taylor's corner - So much so that this mommy has been taken over once again by therapies.

Lets start with Set Back's - Taylor out of no where started stuttering extremely bad. About every two phrases she starts by stuttering. This means all of her goals and work in speech has to take a back seat as we focus on this new problem, as to hope to correct it before she is older. As her mother I should have seen this coming, she was doing so well, her brain was bound to need a catch up period at some point... Its a learning process for us, I am very thankful that we have Nick home for now to help with this set back.

Taylor recently got her new glasses - Bifocals :) She is adorable with them on! She is doing amazing with them, her next appointment is in January and we will see if they are actually working or not.


ABA - we recently took on another two therapies one is social group which is a half hour of social interaction facilitated by Taylor's speech therapist. She is doing amazing and has really made a good friend in the little boy that she plays with! I have also made a new friend who knows just how crazy this life is. Taylor also started with this same little boy peer ABA therapy - ( autism behavioral analysis) she is having a blast playing with her friend and does not even realize that she is in therapy!

This is it for now - Thank you all for being patient as I update the blog :)

Bedtime routine.

So lately, Taylor has been insisting that only her daddy can put her to bed - which is fine and all, but Nick is on swings which means he gets home long after she has hopefully been asleep.

Well this does not fly with Tay, instead we have screaming matches and arguments and door slamming... I swear its like living with a teenager. But nonetheless  I find myself sitting outside her door bawling like a baby - because no one believes me... She does not do it when Nick is home, she does not do it for anyone else - BUT me... What the heck did I do to deserve this?! Geez...

Praying we end this little game soon... Really miss my sweet cuddly Tay.

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.

I thought I would share this -

I am the mother to two beautiful preemie girls - One ( Taylor ) was born at 31 weeks and Addyson was born at 35 weeks.

"But Lord, I don't think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect.She has just the right amount of selfishness.

"The angel gasps, "Selfishness?! Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect.

She doesn't know it yet, but she is to be envied.

She will never take for granted a spoken word.

She will never consider a step ordinary.

When her child says 'mama' for the first time, she will be witness to a miracle and know it.

I will permit her to see clearly the things I see ignorance, cruelty, prejudice and allow her to rise above them.

She will never be alone.

Often I feel alone in this journey with Taylor and I question why?! But I am envied because of Taylor's challenges people envy the strength it takes for us to overcome challenges.

Just thought I would share what an amazing God we all have!

Sight Seeing.

As most of you know - Taylor is in need of a eye surgery that can potentially save her eye sight. She was born with a condition known as ROP - and the immense amount of oxygen that was given to her in the NICU only made it worse. We have been fighting harder than I have ever had to, to get Taylor this surgery. Our Insurance is refusing at this time to pay for the surgery so I have been really busy writing letters and mailing them out to see if one of the pro - bono surgeons can do the surgery... So for now we fight and wait.

xoxoxox

Taking Off.

Taylor continues to surprise me on a daily basis. Just last week she decided she needed to go potty like a big girl and is conquering the goal of potty training so well that even as a mom I have a doubt it will actually work.

In OT - taylor finally went down the slide on HER own... WHOA. Hold on a sec, My child the one who is terrified of the slide - went down?! Im sure Ms. Katie thinks that I am crazy when I look at her shocked. My child is cutting with scissors, building towers and climbing and jumping.... dont slow down Taylor!! Keep growing!!!

In speech - she is now telling stories. Speaking more than just two words at a time, and I can not be more proud of her!!! GO TAYLOR!

So off we go to speech this am just wanted to share some happy news with you all this am.

OT Eval....

So yesterday I was very anxious as taylor's OT therapist handed me the copy of her report from her eval she had done on friday - As I was reading through it though nothing could have prepared me for the scores... In object manipulation my daughter scored 8 months.... 8 MONTHS... I had to hold back tears since I was in the room with Taylor - I think all to often I look at Taylor and I see soooo much potential to hear and see the 8 months in BLACK ink - was very hard and it didnt sit well with me at all yesterday and still doesnt - but at this point all we can do is fight - harder than I have ever had to before and I will because Taylor deserves better than the best ....

That was just her lowest score - she is still behind in all of the areas from 33 months all the way down to 8 months and she is 34 months right now - Ill take it.

Im sure this is rambling but I needed to get it out and share so Yall can be praying we get through this one as well!

Meal Time.

So, lately we have been having issues with Taylor eating - Again. It takes every ounce of energy that I have at meal times to get her to eat even a bite. I have tried every one of her favorite foods, I have let her dip her food into things - NOTHING is working... I do not want to add feeding therapy but sadly it looks like we are headed that way - I hate that whenever we have one success we have another setback... Her sensory issues are getting out of control - and as her mother all I can do is hug her and pray daily that there is a light at the end of this tunnel.

Taylor is a blessing so if the worst thing is she is going to refuse to eat and not allow me to put lotion on her, play loud music or noises, or drive in the rain - then Ill take it - I guess it could be way worse... That is the story I am about to share...

Today at Wal - Mart while we were allowing the girls to each pick out a toy - I noticed what appeared to be a 20 year old "normal" gentleman. What happened next shocked me - I heard a woman's voice call for him .."freddy* buddy lets go come on bring and show me the toy you were looking at." I wanted to cry right there... I felt guilty at the way I had thought - that a 20 year old was looking at matchbox cars... ( Im sure my 24 husband would look at them...) I thought he was normal - I didnt notice till he got up and walked to his mother that he was indeed mentally disabled ( or whatever the politically correct term is ...) I watched curious and thinking what if that is us with Taylor when she was in 20 - I have since decided so what if thats us - I admire that mother and I think without her knowing she has made me even more thankful for the gift of Taylor - As hard as it is every time to hear how far behind she is - I know that I love her with all of my heart and I would fight till the end of the world for her - even when she is 20 or 40!

So friends the next time that you give the disgusted look to that "special" kid in the store or at school... remember somewhere they have a mother and a father that loved them just like your parents loved you!

xoxoxo

Evaluations

This morning Taylor had her evals in the two toughest therapies for this momma to accept. But thanks to support and God we made it through them together... OT eval I will not know what she "scored" until later next week... I know that we have a few things to work on... like catching a ball and throwing the ball... and a ton of sensory issues.

Speech Eval went amazing and through tears I was told that we have done everything right up to this point... now we just have to get ms tay talking in sentences and we are golden for now.

I also was asked if I would consider sending Taylor to a developmental preschool... For now I agree - I think the smaller class size will do her good and although I want her to be "normal" like I have said a million times I am not sure what that is... In my head I would love it if Taylor could attend a normal elementary classroom - as hard as it is for me to make the decision to mainstream her by first grade I know it is possible... Just look how far we have come from being told she may never walk, talk, or do anything and just be a vegetable...

So for now we are getting ready to hang on tight with the wild ride of therapies until she enters school ( sad face ... my baby is going to school in August.) I know that the challenges will keep coming... But we will smash them down just like we have to this point!!!

So friends fellow readers give your kiddos a hug for me and remember take each day as it comes!

Bloom

So before I get started everyone needs to go check out this link -

http://www.kellehampton.com/2012/02/bloom.html

I think all to often I have felt disappointed that the daughter I dreamed about while pregnant turned out to be one of three biggest blessings in my life...

I dreamed when I was pregnant with Taylor that she would grow up to be a doctor or a lawyer or heck why not both? I dreamed that she would play with other kids from the time she could walk and talk... little did I know that with Taylor that wasnt going to happen till she was almost two... To be told your daughter needs to stay in the NICU and you need to go home and rest was one of the hardest things I have ever had to do... I felt like I wasnt a mother to her and that she would be scared while I was gone... I think that this woman sums it up perfect and I can not wait to read her book and cry tears of understanding!

The point is when you have a child you want what is best for them and that doesnt change with a diagnosis... I still want the best for Taylor even when people tell me not to dream so big.

Trying day - very trying day...

As I type taylor is still awake - she is screaming that she wants her daddy to come... All day today she has thrown herself into the floor tantrums and hitting and just being Taylor - I just wish she would fall asleep soon so mommy can sleep. :(

Oh the life of an autistic kid... never a dull moment!

Diving into therapies - Ready? Set? GO!

For some reason in the back of my head I thought that Taylor would just never make it back into therapies - I thought that it would never fall into place. But now as I sit here after an afternoon of phone calls, I am stressed, scared and anxious.

I do not know how to prepare Taylor for what is to come, I dont even know how to prepare my husband for it - who has yet to experience it...

For now we have PT twice a week, OT twice a week, Speech twice a week and then somewhere in that mix a developemental pediatrician, neurologist, and eye specialist...

When I talked to the speech therapist on the phone this afternoon, she simply asked the question tell me about Taylor - I asked her where do I start - she said from the moment of her birth - tears, laughter and frustration were all feelings and emotions that came out in this conversation... as I explained the Autism diagnosis - the sensory disorder - the endless attempts at behavior control... she simply told me one thing, " you are a strong mother - some mothers do not even tell me the whole story and I haev to read it in their childs chart, be proud that you can speak about it and are not ashamed..."
The fact is I am ashamed - my body failed the pregnancy and there is nothing I can do to go back in time to change it... I can only look forward - Fix it and keep going... So here is to endless therapies and lots of Coffee!!

I can say this - I am thankful for my daughters.. both of them Taylor is a miracle - I know that my father and God had a hand and pulling her through a scary birth and scary hospital stay. <3

accepting the things we can not change, but changing the things that we have control over...

This evening was brought with an evaluation of Taylor... I hate these - I hate them more than cooked spinach, I hate them more than death, and I certainly hate them more than thunderstorms...

Here is the results ( drum roll please...)

Speech - 18 months - I do not agree with this, but again change the things we have control over and that is speech therapy!

OT - 20 months, okay I get it my kid hates using utensils and she wont potty train... but really?!

PT - 19 months... She doesnt Jump with her feet off of the ground - she doesnt run and ya lets face it she can climb but can she always get down??

So that is an overall of 20ish months and she is 34 months old... Some days are hard, this was def a night I had tissues and hugged my baby girl tight - Which reminds me, Have you hugged your children today?!

A new Taylor - Are you Ready?!

So lately Taylor has taken to answering questions with a very firm NO or YES... This morning I asked her if she had toes and I was told YES... It is cute to me that she can now tell the difference between the two... We are also working on jumping... This is huge and to a normal ( whatever that is) mother of a normal kid - you are probably thinking why focus so much time and energy on one thing such as jumping... well, this is huge physical developement wise and if we can get her to jump we can jump over obstacles together.... Ha no pun intended. For now we have a happy almost 3 year old and she loves music, books, and dora... here's to hoping the park today is met with excitement and adventure!!! Have a great weekend and more importantly take time to cuddle with your babies today - one day we will all realize that they are grown and we missed out on every opportunity to hug them. <3

Seizures, Autism, and Sensory disorders.

As some of you know, Taylor's seizures have returned... It seems like we cross one hurdle and have to jump over another. I simply put on The Climb and blare it until I calm down. She is doing amazing with her speech, well imitating what we say, which is getting tricky. She uses sentences when she wants to - but sadly we will be starting speech therapy again soon as well as PT, OT and Early intervention ( until April)

We are getting a second opinion on her Autism ... I am not convinced and either is Nick... Yes she has sensory issues but to go as far as autism, um not yet. I will continue to always fight for my baby.

well that is all for now with Tay.