Abril 2014

Ya son 4 anos desde que recibimos oficialmente el diagnostico de Autismo.
2010, precisamente en abril lleve a Gabby a evaluarla y no tarde mucho en la cita con la especialista antes que me confirmara mis sospechas... Gabby tiene autismo. Dificil saber que grado o que profundidad puesto que tambien tiene sindrome de Downs.
Al tener los dos diagnosticos, no podiamos saber si Gabby podia estar "canalizada" con autismo profundo medio o Funcional, El sindrome de Downs asi como el retraso mental son mas dificiles de evaluar.

Aqui yo creo, sospecho, imagino que la doctora esperaba que yo llorara, o me sintiera mal... pero no.. Para mi fue un alivio tremendo saber el porque Gabby habia perdido su voz, porque tantas cosas que con tanto trabajo y horas de terapia habiamos logrado, las estaba perdiendo poco a poco.. y en varias ocasiones de un dia al otro.
Me acababan de dar una respuesta, y por lo consiguiente una posible solucion.

Los autistas aprenden de forma distinta, No siguen un patron exacto ni un ritmo de aprendizaje igual. Lo que funciona para unos no funciona para otros.. son mas individuales.

Gabby esta en ese grupo.
Recuerdo que en cuanto regrese a casa, abri mi computadora y comence a buscar que terapias son las mas recomendadas para autistas, como los ayudo, que tengo que aprender.

Yo sabia antes de que ella naciera que tenia sindrome de Downs... Y pude con tiempo leer y "aprender" que hacer, y como ayudarla. pero con poco tiempo como aprender a tratar un nuevo diagnostico???
La internet provee tantas respuestas y tantas cosas tan confusas que me senti agobiada. La informacion era mucha y nueva para mi. No habia nadie mas ahi para poder preguntar por donde ir que hacer como proseguir.

ya desde hacia algunos meses sentia que yo no pertenecia al "grupo de apoyo del Sindrome de Downs", porque las cosas como son... mi grupo era mas un evento social donde cada mama decia lo maravilloso que sus hijos hacian o aprendian... Y Gabby cada vez mas desconectada del mundo.. Yo estaba perdiendo a mi hija con cada minuto que pasaba...

Y encontre ABA... ( Applied Behavior Analysis) Y no he mirado para atras.
He descubierto a Gabby en su mundo. y poco a poco la estoy regresando al nuestro.

Este mes... espero compartir un poco de esos momentos en el mundo de ella, en el mundo nuestro y ahi en medio donde las dos hemos encontrado nuestro propio lugar...

Feliz Abril

Feliz mes del Autismo....

Alina

Some days,,,,,

This winter with no end is not helping at all to see how much different we are to other families.
Most of the time I talk to my self into not thinking about it... 90 % of the time I don't. I feel like everyone else.
My girl goes to school like any kid her age and she does sports (adapted but sports) and has afternoon activities ( you can call piano or ballet for us is more therapy)
We go to restaurants and she eats chicken fingers and french fries like kids her age... or burgers at her favorite place "Five Guys" and loves ice cream
Enjoys swimming and the playground.
Yeah yeah... so far everything looks the same....

But there are days where the moon is just too shiny or my mood is off and the planets are not aligned right that brings my most horrible sense that WE ARE NOT THE SAME....

While most enjoy playing in the snow... we can't do it.. because our sensitive skin can't tolerate so much clothing on... and sadly our high tolerance to pain doesn't alert us when we are so cold that must people know when to stop and go inside to warm themselves again...
We have to control it but we can't.

Besides this winter with no end has messed up our schedule so bad.....
What most people don't understand is that for us to function, we MUST be a very sincronized oil machine.
We must have a perfect routine that allow us to have a good life.
we can breake the routine once in a while and its ok... we can do it.. we adjust and move on,,
We breake the routine more than once... Well... we are not ok.. we have dificulty accepting that we are not on a one time thing....
when we break this routine for more than a week .. lets say a month then we lose a lot of progress.
Very basic things get on the way and frustration becomes an unwelcome guest who brings the worst and confusion all around us.
By default I become frustrated and angry. and yes.. I say why me....
And I look out the window where other kids are sliding enjoying yet another snow day....
and here I am... hoping to get some kind of routine, some kind of normal for us.
I look like a anti social person.... who rather stay inside.. but just inside is where I can try to survive.

So what should I feel?

Angry at the kids for sliding outside of my window?
Angry at my life for having my stile of kid?
Angry at my self for not pushing her to go out and hang out in the cold with the other kids?

What would you do if you were me?

Not easy to be in someone else shoes...

I know we all have issues... mine probably are nothing.... but sometimes.... some days... they are really hard.....

Autism in a bad winter....

A mom posted in her blog about bad Winter we are experiencing this year...
My God!!! I swear I read it and laughed so hard... its true!!!! its terrible... schools cancel every day every other day or have delay hours... then the roads are covered in snow or ice or both!!. the generators are on... but we only can have the refrigerator on or the furnace, or we can charge our electronics but we don't have hot water.....

And then there is us.... an autistic Family who live by the love of routine... where the toaster has to work every single morning to make Gabby her waffles, the coffee maker saves my husband day and I relay on Internet to play on facebook my farms or go to Pinterest to find another crochet project to keep me sane....

Gabby has been good.... but the Ipad can work so long until it needs to be re charged... and then she wants to go to her bedroom.. but its freezing cold and we have to convince her that socks are not optional now and she must wear her thick pants and shirts.... and in her mind she only uses them when she goes out!!!
Netflix... dear love Netflix with your cartoons and movies that keep Gabby happy.... where are you????

The look on her eyes of desperation and frustration because the icon is there and the movies dont come up!!! why???? why??????
mommy cant help her... Daddy cant help her... and she keeps requesting over and over cereal and going out....
to the point that she took a picture of herself at the beach pointed at it and cried.....

I understand my loving girl... I do... so much I want to curl next to you and cry too.... this winter is hard... but we can do it....

we'll have the best spring and summer ever!!!!

Happy news

I have to say.. it's pretty usual that when I pick Gabby from school, I don't expect more information than "she had a good day"... I have the occasional "she was interested in art, she had fun in PE, she didn't care for music.... She was tired".... But that's pretty much the whole story on Gabby's day from 8.30 to 3.00...
How was Gabby's day?? Did she play with any kids? did she learn something new? did she use her communication device to talk to someone besides her teachers? did she do something independently?
Did she smile? was something funny? did she hear and applied instructions? how was Gabby's day?....
I think most moms in my shoes know the feeling... the desire to be able to talk to your kid and hear those answers....
I think we wish what others hate ... that babbling the kids go on and on and on about their friends, their games, and their homework...
I wish to hear that from Gabby... still I wouldn't change her answers that are smiles and kisses... and looks that give me a good feeling.

Yesterday for the first time I got great news... Her PT came out and with shaky voice told me if I got her phone call or email... with worry i said No.. i didn't get any of that....
and then she goes on detailing how Gabby for the very first time JUMPED... cleared the floor 2 times.....
She was so excited telling me her story... right there in the middle of the parking lot... watery eyes were present!

Gabby JUMPED!!! her PT has been working on this goal for 3 long years... and the PT before her 2 more.....
The feeling is amazing....

But the thing is... when the PT came out to tell me and was as excited as I was... it also re affirmed my feelings that Gabby is surrounded by many loving people. People that care for her and cheer for her success. People that don't give up easily. who find a way to get to her, who find a way to bring her to us...

Mrs.Nugent... Thank you. Thank you so much for this and more.

Feliz 2014.....

Mis deseos para el 2014....
wow... es algo que desde que me acuerdo ha sido una tradicion en la casa, las uvas los deseos con cada uva mientras dan las 12... y los suenos de que muchos de esos deseos se pueden cumplir....

Mientras vamos creciendo los deseos van cambiando... me acuerdo que deseaba juguetes, deseaba un coche, deseaba entrar mi carrera, un trabajo.....
Y los deseos tradicionales.... Salud, dinero y amor....
Y el infalible... BAJAR de peso......

Y hoy.... empiezo a pensar en mis deseos para el 2014... que deseo???

Y finalmente pienso...  que estaria en la lista??
Lo tradicional... por supuesto, el infalible .. sin duda ( hay que continuar con la tradicion no?) pero aparte de eso.... que quiero???

Nada....
Pero Ojala tuviera mas paciencia para poder continuar mi vida con Gabby
Ojala mas gente tuviera iniciativa para crear mas programas que ayuden a Gabby y ninos como Gabby para vivir una vida normal
Ojala hubiera una forma mas facil para estar cerca de la familia y los amigos....

Mis suenos son grandes y muy dificiles.

Sueno que puedo ver la vida como Gabby la ve para poder entenderla mejor
Sueno que Gabby puede hablarme y decirme que piensa
Sueno que puedo darle a Gabby la habilidad de ser como los demas sin perderse a si misma
Sueno que Todos pueden entenderla comprenderla y amarla tal como es....

Cuales son tus suenos??

Feliz Navidad!!!

Cena... Lista
regalos... Listos Envueltos y bajo el arbol
Mesa... bella....
.... Que tu marido se enferme a unos minutos de que lleguen tus invitados..... priceless.....

Merry Christmas!!

Im grateful

So after our failed Thanksgiving day....  my husband, my hero... really got me back to reality...  he just said.. are you surprised? didn't you expected something like that?

I must admit... I always think I can predict Gabby's behaviors, her wants and needs and all Gabby situations possibles.... But I have to be reminded... the unpredictable will always be there... Its so easy to fall into a very strict routine to make it work that I forget to expect other outcomes.

This year I didn't get to sit with the family for dinner... but I'm grateful....

• For having understanding family members who didn't make us feel bad because we couldn't stay
• for not giving us a hard time for having a spoiled kid who does what she wants, but more understanding that YES she is different, and tonight wasn't her night....
• For having friends who I can call and tell them the story and they will laugh with me ...
• For my hero, mu husband who patiently waited for the green monster ( me) to calm down and quickly found a place who luckily had a thanksgiving plate!! (yeah how about that???? )
• and again for my family who put up with us again on Saturday and let us come over again and have a do over.... even when Gabby was done after finishing her meal....

It happens... I can predict her anymore... I have to be prepared... and will continue to carry a big tote bag and feel like Mary Poppins... with infinitive amount of "in case she needs it" items.....

and I'm grateful because she gives me that smile that makes me feel that despite the changes on her routine... she is a happy girl...