Gabby Update on her leg

Dear friends...
Here is a quick  story of what's going on with Gabby.

On fathers day she woke up limping.. weird as the night before she was absolutly fine... by the afternoon the limping was more obvious and we didnt find any bruises or bumps or anything we could identyfy as possible cause for it.

Gabby never shows signs of pain and never complains... So when she gets hurts we know by her actions. It sucks when your kid cant speak and tell you < mommy it hurts> and you cant do anything about it...

So Monday when we saw the limping more pronunced  we went to the ER instead of going to her regular pedi. ( thinking we gain some time in case they need Xrays...)

Sure enough X Rays were done (12 sets) and bloodwork (4 vials) 7 hours at the hospital later the doctor suspected of A virus but looking at her X rays she also saw something abnormal on top of her right knee.

there wasnt anymore she could do... and send the info to our regular Pedi.

He called next day and said he wants to get a study on that abnormal thing... and he made an appointment for us to see an ortho specialist...

She got an MRI yesterday under anesthesia... and the results are inconclusive as they cant figure out what it is...
Only that is in her bone and to be able to "see it" they need a CT scan and possible a Biopsy...

Meaning 2 more anesthesia times... 2 more runs to the hospital ( we are 2 hours away) and long waits for the specialist...

I dont mind the waiting.. but you can imagine... Its not easy for Gabby..... it is stressfull, mentally, physically and emotionally exhausting....

BUT... Gabby doesnt complain... she was there yesterday since 5 am.... getting her IV on and not a sound....

This kid is a strong warrior.
She knows she is in good hands
she trust us to make the best desicions for her
She loves us so much

So yeah I'm nervous..
But I'm a strong believer that she will be fine. and God will protect her and make everything well..
We might have to face a hard time soon... but I will be strong for her.

Thanks for all your love and concern.
I do apreciate that you take the time to check on us....

I'll post more as we go.

Alina

The irony

So as I try to post every single day in April about Autism, I had realize every year gets harder.
My goal so far has been to express what it feels to live and love someone with this DX.  Specially someone who has a dual diagnosis.

Most of my circle of moms, from either support groups, play groups or even online groups try really hard to talk about facts and make people conscious about how common is becoming to know someone in the spectrum.
More and more we see our kids getting diagnosed under this huge umbrella, and we struggle to find a key to their world NOT A CURE...
We face their world hoping to fit in and at the same time we try our hardest to help them fit in our conventional world where most likely have a hard time finding that not everyone welcomes them
We face tons of pain in silence, as we try to force a smile to the world and say "All its well" when inside we are crumbling in desperation to have our kids live a normal life and by default we get to enjoy a normal life
We try really hard to get services, therapies, medical attention and we get blocked by insurance policies that cut us down to minimal attention, we then, learn how to do it ourselves
We feel irritated and angry at the "looks' of disapproval from strangers who don't know or don't understand what we are going through, and at the same time, we are so tired that many times we are numbed to them, and we ignore their ignorance and keep going on.
We know it's is a hard long path, We didn't ask for it, we got put on it and we have to keep moving forward because backwards is NOT an option.

We learn unconditional love to our kids,
We learn that we know more than we think, and we see what others can't
We see through their eyes that love when they can't speak. We understand when they want a hug but they don't ask for it.
We understand their pain even when they don't complain about it.
We give our all for them and then more.
and we appreciate all those little huge milestones that most give for granted, and they are not lucky enough to see the amount of work it has to be done to make it that far.

I'm a mom to an amazing girl. a Girl who has autism and loves me to the moon and back because I love her to the infinite and beyond.....

BLOOD WORK

YIKES>>>> just typing it makes me cringe...

Who in the world likes it.... Oh well ok the Phlebotomy's do.. because they get paid to do it.. they probably have fun seen our faces while they show us those needles....

But to get the blood work ??? OMG... most "brave" people... look the other way... bite their lips, pretend nothing happens and yet when the needle pinches you and goes into your skin.....

you JUMP... come on!!! you do!!!!

But guess what?? Gabby doesn't care...

Today we went to get blood work done and she just had water before going as it has to be with empty stomach to get as accurate as possible....
but she totally understood where were we going, and what we needed to get done...
to many she didn't cry in the waiting room (most kids freak out just to step there) and she was calm watching her movie on her Ipad.
so I went and register her and she came with me grabbed a pen and wanted to sign in herself... So I gave her a paper to do it...
She scribbled something and I handed it to the nurse.... (she was nice enough to "read" it) and tell her directly thank you and I'll call you in a minute.

So Miss Sue came out of her room....
She is a tough cookie.... and let's leave it like that.

So Gabby goes to her room and sees "THE CHAIR"..... but she hands me her Ipad and climbs up alone...
and extended her arms and hands....

Miss Sue and I were just staring and looking at each other.... (What??? she wants to do it alone???)
she turns to me and ask... are you sure mom???

What should I do???

So I said... well.. let's try... she seems to want to do it by herself....

So she proceeded to get her ready... and Gabby was watching the whole thing....

So she went for the needle and ZAP.... there it goes.... Gabby didnt jump... didnt move, didnt make a sound,...
she waited and watched the whole thing.....

HOLY COW.... She did it !!!

waited for her band-it and walk out like nothing....

Did that just happend????

Well it did....

See ??? amazing every day.....

Los amigos

Dicen que uno conoce a los amigos en los peores momentos, en las enfermedades y esos momentos donde no encuentras una salida.
Ahi descubres quien es quien. Quien esta contigo por ti o por lo que tienes.

De igual manera yo he descubierto que tengo MUCHOS conocidos pero tambien muchos amigos y cada dia mi lista crece.

Es una lista muy peculiar porque son pocos los que pueden aceptar mi amistad.
Normalmente uno dice que la amistad viene sin condiciones... La mia.. viene con muchas. y lamentablemente no puedo ofrecer ser reciproca muchas veces.

Yo no puedo hacer un compromiso fijo, porque hay muchas variantes, todo depende de como Gabby se sienta ese dia.
Yo no puedo compromenterme a ir a una fiesta de cumpleanos y quedarme... porque tal vez Gabby no quiera entrar a tu casa o compartir con tus invitados o comer tu comida.
Yo no puedo comprometerme a unas vacaciones porque Gabby solo quiere dormir en su cuarto en su cama en su casa.
No puedo comprometerme con el autobus escolar  o la ronda porque Gabby no duerme siempre toda la noche y hay dias que simplemente no llega a la escuela.

Pero quienes son mis amigos me comprenden, y aun cuando no estoy presente me llaman, y me siguen invitando a sus fiestas, aunque no siempre puedo ir,
Mis amigos hablan con sus hijos y les explican como es Gabby.
Mis amigos tienen paciencia y entendimiento
Mis amigos saben que aun que no puedo hablarles constantemente, yo los quiero.
Mis amigos entienden mi vida y la respetan,
Mis amigos me escuchan sin hacerme sentir menos.
mis amigos me ayudan a distraerme y mucho mejor me ayudan a reir!
Mis verdaderos amigos me ayudan a vivir mi vida.

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!!!!

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.