Routine...

Who does love routine? You know.. every day get up, eat your breakfast... go to school, do your afternoon activities, go to bed, and next day start all over again waiting for Friday so you know that over the weekend you can sleep in (maybe?) go to a birthday party, hang out with friends... just change a little bit from the boring monday - friday routine....
I guess for most this is it right??

for us.. totally the opposite... ROUTINE??? BRING IT ON!!!! we need it, we love it, we function with it...
Love to wake up with the same kid of hugs and kisses, and the same "good morning sunshine! time to go to school!" then the same breakfast ( sometimes we change our likes but pretty much waffles and milk)
and then off to school, to my lovely very well known hallways and classrooms, and well.. you know the routine of the school environment.
and then after school therapy that are the same ,
and then the well known night time where I get my bubble bath... and jump on Mommy's bed for a little tv... and then off to my own room in my own bed in my house.....

Comes Saturday.... OH OH... no school...!!!!! now what???? here I am after breakfast... with my backpack and mom says no Gabby we are not going to school.... and I know I have to go.... so If she is not taking me I should go by myself... So I open the door and go out....
So mommy comes running after me and stops me... but she doesn't get it.. I HAVE TO GO....
and she insists today i don't....
so after a lot of insisting I give up and go back inside with her...
and we try to do stuff,.. but I don't want to do them because I'm not at school... what does she think?? she;s a therapist now???
Uggh...
wait now that i want to play she wants to cook?? oh no... not happening... she has to play with me...
Fine I'll eat this ... not sure why it has those hideous carrots... but well.. I'll pretend...
Go out??? where do you want me to go???
whose house??? what's there??
I don't know this place, I don't like all these new people... to loud.. to crowded... where is the door?? I'm out of here... I don't want to stay with them...

And finally we go home... here I come to my room... safety... just as I like it...

To think tomorrow I"m going to school.... I heard mommy said No.. because it's Sunday... but I know she doesn't get it... tomorrow I'm going to school.....

When the good news come

 

 

There is a thing about having a DX... you always think only negative things and very rare think that life is awesome.
Not always.. yeah yeah... we do have bad news, bad nights, bad days and bath seasons... but we also have great times...

There are days where I don't envy at all those whiny kids at the store screaming for a toy, days where I don't stress because I am not buying the latest toy,or because we couldn't go to Disney like a friend at school....

There are days, my personal favorites where I get full eye contact and a smile.
Days where I get hugs and request to stay with her until she falls asleep
days where by chance her OT says how much more she is doing and gets excited with me for something as simple as filling her own water bottle with no help and no dripping!!!!
her PT says how many attempts we had for jumping and the ones when she actually jumped!!! and we all cheer for her.
Days where she walks by her school hallways and every teacher says HI GABBY, but better when a peer says HI and waits for her to respond.
Days when I come early or drive really slow to see if I can catch a little glimpse of her on the playground and see her with another kid playing

And days when I want to cry in happiness because one girl asked to have a play date with her just because she loves her.....
or because I saw that she was able to recognize 5 written words and I didn't know it....

Days when I think she wont get what i say, and I look like a fool because she does!!

I love days like these and I hope I get more and more....

Mis alegrias

En mi mundo... ( si digo mi mundo por el estilo de vida que tengo) nuestras alegrias son muy distintas a las de una familia "tipica"

Estas semanas que he convivido mucho con otras mamas elaborando el anuario de la escuela de Gabby, he podido escuchar conversaciones "tipicas" donde escuchas de sus invitaciones a tantas fiestas de cumpleanos a las que los invitan, los videojuegos que ya les aburrieron aun que acaban de salir al mercado, escuchas de los eventos a los que van, los viajes que estan planeando para el verano, los campamentos a los que van en verano.. torneos deportivos....
Me imagino... lo "normal"....

Pues mi normal es bastante diferente... Gabby participa en deportes, pero nunca compite...
Me explico? bien.. Gabby participa en deportes Tipicos pero adecuados para ninos como ella.. donde Todos los participantes son ganadores, No tenemos un solo equipo perdedor ni un solo nino sin trofeo o medalla.
porque? porque aqui lo que cuenta es cuanto nos divertimos... y si es futbol.. hay unos 50 balones en el campo y todos corren hacia cualquier lado para "meter un gol" o simplemente logran patear el balon... Y en las lineas TODOS los papas aplauden y se emocionan porque vemos sus caritas felices y orgullosas.
En Basquetball lo mismo... Miles de participantes y voluntarios con dos balones por nino y a veces estamos sentados rodando la pelota de lado a lado o si se nos ocurre corremos o pateamos el balon...
Total el caso es divertirse no??

En natacion la idea es no ahogarse asi que tenemos instructores dentro y fuera de la alberca y no medimos tiempo, medimos cuantas pelotas encontraste mientras llegabas a la orilla...

Y puedo jurar que la cara de todos y cada uno de estos ninos cuando participan en estos eventos es mucho mas alegre que los tipicos... posiblemente porque requieren mucho mas esfuerzo para controlar sus emociones, controlar sus musculos y sobretodo su atencion hacia un solo objetivo...
Cosas que un nino tipico por naturaleza PUEDE controlar naturalmente...
Nosotros trabajamos mucho para lograrlo y ellos lo saben, lo sienten y se enorgullecen de estos logros tan grandes.

Entonces pienso... Gabby es tan normal como los otros ninos.... solo que hace las cosas a su propio modo en su propio tiempo.....

Feliz dia 3 del autismo...

Autismo .... Como ves?

Obvio que cuando te dicen que existe un diagnostico.. cualquiera que sea desde una insignificante gripa hasta el terrible cancer, te sientes terrible... y tu mente da vueltas buscando que hacer... cual es el siguiente paso... como salimos de esta....

De una gripe... hay muchas soluciones, desde caseras hasta inyecciones y cualquier cosa y en 3  o 5 dias ya estas dando brincos...
Del Cancer y otros males pues con mucho dolor paciencia y amor sabes que existe la posibilidad para curarla o al menos hacerla leve....

Pues imaginate... Cuando tienes el autismo... NO HAY CURA... no existe... en primera no sabemos de donde viene o porque??, no sabes en que momento tu vida cambia y no solo no sabes que hacer, no sabes a quien preguntarle... ..
Estas en un abismo donde no hay tantas salidas...
pero como dicen... Donde esta Dios no falta nada... Y no es que yo vaya a la iglesia mucho... ( hace mucho de plano que no voy...) Pero Dios nunca me ha fallado...
Y ha puesto en mi camino soluciones y personas que me han guiado... de repente una idea, de repente un tratamiento o una terapia... y muchas veces las palabras adecuadas para saber que pedir, que preguntar, como ser la voz de mi hija ante tantas barreras.

Me he sentido un instrumento para Gabby en el sentido de que yo voy abriendo camino para ella, Yo puedo prender una luz para guiar su camino, y estar ahi cuando tropieza y animarla a seguir adelante.

Muchas veces sientes que vas por este camino solo, abres caminos pero no sabes a donde te diriges...
Y vuelvo a decir... Dios sigue ahi conmigo... porque cuando menos me imagino aparece alguien o algo que me ayuda a seguir adelante.

Gabby me sonrie, convive conmigo, se comunica y siento lo que ella siente. Tenemos una comunicacion unica, bella, transparente y magnifica.

Yo podria decir que no le envidio nada a nadie... en este sentido porque ella me lo da todo y sabe que por ella yo doy todo...

Hoy es el dia Mundial del autismo.... Pero mas bien, es un dia para invitar a la gente a que pregunte a que se informe...
No es nada agradable esas miradas de curiosidad... prefiero mucho mas que me preguntes a que te quedes mirando haciendo tus propias conclusiones...
Esas miradas de morbo y cuchicheos malhabidos.... no me sirven de nada y si molestan ....

Ponte en mis zapatos la proxima vez que veas a alguien como Gabby.... Imaginate que esa persona es tuya.... y veras que tu corazon no te alcanza para amar sin medida....

Hoy voy Azul por Gabby....

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!!!!