No poder hablar... y tener tanto que decir....

En estos dias he tenido que enfrentarme a lo que siempre he querido evitar... Confrontar a alguien por mi hija....
No es facil estar en esta posicion. Como mama que soy, mi maximo deseo es ver que mi hija tenga exitos y este segura, y este feliz... A Dios gracias tengo eso para ella. Pero cuando algo sale de control... no es facil conformarse con solo ver, sonreir y continuar. Quiero demostrar siempre que ella es mucho mas inteligente de lo que muchos quieren ver, de que hay mas en su interior de lo que muchas veces ella demuestra a los demas. Yo lo se. Yo lo he visto, yo lo vivo, yo lo siento. Ella y yo estamos juntas todo el tiempo y no hay dia que no me sorprenda con algo nuevo.
Vivimos con doble diagnostico, posiblemente es una de las razones por las que muchos no quieren ver el gran potencial que ella tiene. Pero yo lo se.
Como quisiera quitar esa venda de los ojos a la gente ignorante que se empena en solo verla como una estadistica, o como alguien que puede conformarse con lo minimo de esfuerzo.
Ella quiere aprender, quiere participar, puede aprender y puede participar. Siempre ha sido algo natural jamas forzado.
La adoro, no tengo nada mas bello en este mundo que su sonrisa todas las mananas al despertar. Asi sea a las 2 am o a las 10... su sonrisa me da paz, me conforta, me da energia para seguir adelante.. con ella y POR ella.
Y gracias a Dios por tener a mi marido... que me aguanta y me espera, me da mi tiempo y me comprende. No es facil estar en sus zapatos...  Se ira al cielo con todo y zapatos!!!
Quien me aguante cuando estoy de mama Osa... es un santo!!!.

An extra Chromosome

So here is a little of what I have been thinking this week:

Sometime this week there has been a "wave" of comments regarding having kids with special needs, either on the ASD or Down syndrome or any other disability. Yes it is hard path. No, is not for anyone. And thinking back on all the comments and posts I have read here is the thing for ME:

Gabby came to us as the most wanted, wished, prayed, cried, and desperate needed baby. I was able to be smart enough to ask for prenatal test. And here is the most important thing. I wanted the test not to end my pregnancy. But to be ready. NOTHING was going to change my mind about having this girl.

It was really hard to know she was coming with an extra chromosome, It was hard to hear "when do you want to end the product, I can do it next week...." with no more than 2 minutes after hearing Yes it’s a girl, and has DS.....

It's hard to hear a doctor say... well.. She might not be able to walk, eat by herself, go to school and function like any other kid...


But it was so much better to hear my husband say.. I love you no matter what. To hear my mom say.. We are with you, and YOU CAN DO IT.

So after crying and mourning the "normal, perfect kid" I was no longer going to have... I was blessed to have a change of though and get ready to be the best mom I could be.

Read any book regarding Down Syndrome that fell in my hands, my MIL.. bought also tons of books on PT, OT and Speech and even behavior on kids with DS for her and us...

THAT.. was just perfect.... She was loved by all before she was here... I was aware of what difficulties we could have and learned success stories to prove myself there is more out there to be done...

So yeah... We were ready for Miss Gabby... and yes.. It has been different, It has its challenges, but She is amazing.. She wants to do everything like everyone else. She was able to walk, feed herself, and dress herself.

She is learning to swim and ride horses.

She adores Daddy especially when they go on a four-wheeler ride. We do crafts together; she helps me fold clothes from the dryer (her own way of course)

She is loved at school by her teachers, aides, therapists and peers.

and my Husband family and mine love her... so so much.... I have seen more smiles than tears; I have seen more satisfaction than disappointments.

I keep learning, and even more now that we also have the ASD diagnosis... well.. our challenges got different, but manageable... and even then.. I see my girl as the most precious treasure in the world.

Why I would like to change it... why would I wish not to have that extra chromosome...

And I think... well... my challenges can be helped, can be prevented, can be worked with, so why not?

 

There are so many times when you think kids like mine.. just "don't get it". We try for months and again and again showing them how to do something, teaching them to understand OUR world.  We try to make them leave THEIR world, and make them more "normal"...

Then one day "it" happens.. they surprise you doing whatever you have been trying to drill in their brains... and they do it so naturally like saying "duh... don't you know I know that???" don't you know I CAN do that?? or I shouldn't do that???"

So again... I should NEVER say.. she cant... she CAN DO ANYTHING she wants.

 It takes some time... it takes TONS of patience, but when it happens... the heaven opens, tears flow, you want to scream to the world how proud you are... They become Michael Phelps of the moment.

and mommy... well mommy is there... watching and knowing that no one cant tell her little girl she cant do it...

I love you Sunshine... I'm so very proud of you as always.

 

For Aziza

Well.. I spend lots of time on my computer, reading about autism, down syndrome, IEPs, ABA, and I dont know how many other new things that my friends suggest or they had tried with their kids... all new studies, all crazy remedies, play times... fun things to do...
then I try to do as many as I can.
Most of these ideas are on Facebook... meaning.. I do spend quite some time there and I find myself thinking on many people who have kids like mine as part of a very special circle. Some of them I know just on Facebook and I read their posts, once in a while I respond to some of their comments...
Some of them I kind of get closer and get interested in their lives as I see a lot of similar situations.
I know I wont be able to meet a huge number of these "friends" but I know I will keep them always "Close to me".
So one I get to read about any of this friends having their kids get sick, going to doctors appointments, having surgeries, having a hard time at school, getting bullied.. It hurts. Because I can put myself in their shoes... I know how it feels to have to all those doctor appointments, I know what it feels to deal with crazy insurance loops, I know about the tantrums, I know about the looks... I know about the feelings of not fitting in...

The one thing I can not relate and I really hope I don't ever have to relate to, is the lost of a child.
I cant imagine, nor I want to feel that way.
My life has been my daugther for the past 7 years... all I do, all I feel, all I fight for is always with her in mind.
So... to imagine wake up and she is not with me....  No... I cant even go there....

I don't know what to say to these friends who have to be at home and their little one is not there anymore... How do you say I'm sorry? sometimes I'm sorry feels not enough.
I do want to hug them, to cry with them, to tell them it will be ok...
My religion says that we can go to heaven. Our kids have Not even a mean thought... so I do believe they all will be going to God. ...

I had hugged Gabby so hard this week... I had told her I love you over and over and over again...
I had kissed her tons.... even when she pushes me away..
I see in her eyes that she loves me back..
She might not be able to say it.. but our hearts are connected beyond words...

If you are reading me today... Say a prayer. Maybe many prayers will help heal a mom's broken heart and give her some comfort..
Aziza... We pray for you today

It feels great....

To see your little one so confident when she is finally doing something alone...
Last year her aide had to come to open the car door and hold her hand to guide her into her classroom..

Now.. Miss Gabby not only walks independently but knows which one is her classroom and follows her morning routines...
Specially since most mornings we are late to school....
So she waves Hi to the girls in the administration room... then she waits for me to sign her in... waits for me to put her glasses on.... waves bye bye... and If I'm lucky she even gives me a kiss....

Then she turns onto the hallway... and off she goes...
The secretary just calls her teacher and says.. Gabby is on her way... and they wait for her at the end of the hallway....
Best part... she is smiling and she waves Hi to anyone who passes by her....

yup... things like this makes my day so shiny!!

New Milestone!!!!

Ok.. this might not  be a big deal for you... but for me it's wonderful.
Gabby is a very picky eater... don't get me wrong.. she LOVES to eat... I actually have to hide stuff from her.. but she doesn't try new food, new textures, new colors...

Today for the first time she came to the kitchen and check what I was making... ( a Pate).. (i couldn't find the fancy writing for that letter....)
So she stole a piece of chicken I was cutting.... and then... I offered a little of what I was making.. that it was basically mashed chicken with peppers.... so it was reddish...
and she open her mouth and ate it... SHE DID....

Well then I dared to try again and made her a sandwich.... She has never ever tried to eat one.. actually she sees one and pushes it away!!
SHE ATE half of it!!!!!

OMG... LOVE IT....
I adore this kid. Silly new things make my day!

Diciembre????

Hablando de que rapido pasa el tiempo!!!. Pues a sacar el arbolito y los adornos y a ponernos abrigos mas gruesos, gorras, bufandas, botas, guantes  ademas de tener cuidado al caminar sobre hielo... nieve...
La ropa se te moja mas facil.....

Divertido... si puede ser... pero si tenemos un dia "autista" en esta casa... la ropa nos incomoda, no nos gusta ponernos las botas de invierno.. porque no forman parte de nuestra rutina...

No nos gusta nada en la cabeza... y a pesar del frio preferimos casi casi no usar ropa!!!
He comprobado que no soy la unica que experimenta esto con sus hijos autistas... No todos.. pero varios tienden a pensar distinto cuando hay calor quieren usar mucha ropa, cuando hay frio casi nada...

Entonces hay que convencer a la princesa de ponerse toda esta cantidad de prendas... Y gracias a Dios lo logramos... Ahora entiende que si quiere salir ( adora ir a la escuela!!) tiene que ponerse todo...
Y cantamos mientras nos vestimos...   Y contamos UN gorro, Dos zapatos, Dos guantes ( uno Dos)....

Al final de una semana ya era rutina... y ahora disfruta todo el festejo de vestirse... aunque en el coche se quite los zapatos calcetines guantes gorra y chamarra y tenemos que vestirnos nuevamente antes de bajar a la escuela.....

Ahh.. esa es mi Gabby... si claro hago lo que quieras porque me cantas.. pero en el coche... YO MANDO!!!

Saludos