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?!