Happy

What can I say... I am Happy...

Yes we were struck twice with diagnosis  we didn't expect, we didn't want, we didn't imagine.
Life has made us adapt to our very particular situation. We face many unexpected responses from people.
We lost some friendships, we got stronger with some others and we gained new friends too.

We Deal with life one day at the time because that's the only way to do it and we enjoy all of it.

I have a great husband who helps me every day to be a better mom, I do hope he thinks I made him a better husband and dad.

We balance each other every time we get out of control. I'm messy, he's organized. I'm strict, he's flexible I'm all hugs and kisses... so does he!
He works so I can stay home and care for Gabby and her multiple doctors appointments, therapy sessions, sport activities and more....

But still. at the end of the day he's there. We laugh together, we cry together. we hope together. We plan together.
We fight like any one else.... sometimes he's right.... but he knows I'm always right.!
He spoils her so much!!!! and I love him for that.
He spoils me so much too.... and I adore him even more every day.

Yeah.. we got hit twice.... but so far we are stronger.... and I'm happy.... very Grateful to God for sending him my way...

Scared

This month brings a lot of us to think about the future.
 In a "typical" family, you are set to think about the best schools so your kids can excel in academics and/or sports.
You go to as many meetings, you go to the social clubs, attend birthday parties, have play dates, cheer on the sidelines for your kid who is playing .....
Your concern is mostly that they don't skip class that they complete homework and get good grades so they can have a chance at a good College.

A lot of people start saving for that tuition, others are lucky to have scholarships and the not so lucky will end having to get the best paying jobs possible to re pay the loans for their education....

So far... am I on the right track?....

Well, My family is NOT typical, but we want the best education Gabby deserves, we wish we are invited to birthday parties and playdates, we attend special needs sports, ( baseball, basketball, soccer, swimming, and horseback riding)

She can't get "grades" but she gets measured by her own goals. We try not to skip school, but doctors appointments and lack of sleep make it hard.

Yet... we can't plan for College...  there is not such thing for us....
Desperation will set in soon.... as school will be provided until she turns 21. and then.... WE are on our own.

Jobs? for a lady with Down Syndrome, Autistic and non verbal? hummm... haven't seen that anywhere.
College opportunities...? nope... nothing like that either....
an apartment?  really??? how will she live alone? or pay the bills? when she cant get a job?

Scary ? yeah... but not so much as to think beyond jobs and room....

What will happen when Mom and Dad are not here any more? What will happen if we can find a place for her that will care for her the same way we do?
who will be there for her?

then... I can say,.. That it's scary. That is a reason to have anxiety....

Nadie dijo que seria facil....

.... Pero tampoco nadie dijo que seria Imposible.

Gabby cada dia nos sorprende con lo que hace, como lo hace, con lo que "dice" como nos hace parte de su mundo.

Hay dias que son tremendamente complicados, especialmente los dias cuando duerme unicamente 3 horas... 4 horas....

Los dias en que esta enferma y no puede decirnos que se siente mal, que necesita ayuda.

Gabby tiene una alta tolerancia al dolor, y por alguna razon que no hemos identificado, Gabby todavia no reconoce su cuerpo y no puede decir donde le duele...

Te imaginas???

 vivir en otro pais donde tu no entiendes el idioma? donde todos se mueven mas rapido que tu... te duele la muela y te da dolor de cabeza... te impide dormir, pero aun asi tienes que ir al trabajo, a la escuela donde te estan ensenando a adaptarte a la cultura de ese pais que no entiendes... y te sientes mal... y no has aprendido a comunicarte... 

Te sientes tan mal que las luces los sonidos los olores el ambiente te molesta te incomoda....

Y no puedes decirle a nadie... Y todos estan ahi preocupados... tratando de entenderte... y tu los miras y cansadamente intentas nuevamente expresarte.... pero es tan frustrante que prefieres irte a una esquina y cubrirte con una manta para no estar expuesto a nada....

Pero el dolor sigue.. necesitas ayuda.....

Con Gabby muchas veces es cuestion de adivinanzas y de milagros para encontrar el motivo de su incomodidad.... 

Me cuesta trabajo muchas veces descubrir que tiene pero Bendito Dios muchas veces he podido encontrar soluciones rapido.

Si tu has visto a un nino con autismo haciendo un berrinche,.... No lo juzgues.... No juzgues a sus padres... En verdad No sabes que ha pasado para que el tenga ese momento de desesperacion. Y sus padres posiblemente tampoco saben...

Ofrece ayuda... Si es en el super ofrece mover las bolsas al coche... Si es en la calle ofrece detener el trafico para evitar accidentes...

muchas veces ofrecer una sonrisa comprensiva No de lastima es suficiente para darnos un poco de alivio...

Muchas veces nos sentimos solos.... pero un amigo un VERDADERO amigo nos comprendera.

Too many changes....

It has been a while since I was able to take my time to type.
Lots has happen around us. Life keeps moving forward.

Gabby is now in third grade technically although she is in her own grade by herself. Gabby can't be measured with her " neuro typical " peers and the gap is looking very different than last year and years before.
It will only get bigger.

Gabby also moved to a new building along her peers as our school district has the 3rd 4th and 5th grades in another building.
This change has been one I didn't expect to see her so upset about. But I had put myself on her shoes... or at least pretend to see how she sees things and what I saw made me realize how the change has impacted her life and ours.

New building, new hallways new playground, new teacher, new people all over... No more bubble. Lunch room is louder. My peers are more energetic and talking about stuff I can do... My new teacher is working so hard to help me but I can't even start thinking about that when I still have to pay attention that mommy parked in a different spot.. This is NOT my school... these people are not the ones I used to see...
My classroom looks different. I don't have the same toys I used last year, I don't have my beloved books, The library has books that have more words than pictures and I miss seen my library books from my other school.
The music room is not the same... and my peers are playing music instruments.. I can't follow that... my fingers are not as fast as theirs are.
In Science class they are talking about measurements and I'm out of my league here... Really?? I still cant count to 10... I still can't understand between one object and 5 objects... this is hard...
I don't have my little bathroom... now I have to share it with other girls... so I become shy to go to the bathroom.... I don't like to hear other people next to me!

I like my teacher.. she seems nice she talks like mommy.. and plays with me...but I'm alone in this classroom... and then I have to go see my peers who have been doing stuff in "our third grade classroom" and I missed that because I can't understand the lessons...

I don't have enough time at recces. it takes me too long to go out and make it to the swings and then its time to go back inside... and for some reason the mud room where we have to go through to get into the school its driving me crazy... I do not want to go through it..., so I drop to the floor and I cant explain anyone why I don't want to use that entrance....

My teacher is building a safe zone for me in our classroom... she lets me watch " Backyardigans" when i finish my work and I like that.
She got me a weight blanket and a bean bag that I love! and its giving me a break... she lets me turn off the lights and we play soft music.. we even do yoga!

Im still trying to adjust and its not easy.....

Despues de mucho tiempo......

Hablando con papa hoy, me dijo que extranaba mis blogs... porque es una forma de seguir conociendo a Gabby con la distancia que tenemos.
Es dificil mantener ese contacto a larga distancia. Todos los dias hablamos por Skype, Gabby saluda a mami y papi pero no tiene esa relacion que todos queremos.
Gabby sigue avanzando, sigue creciendo y la familia la sigue a travez de la computadora, de los mensajes por celular, por las fotos y videos que envio constantemente.
Pero falta ese sabor y calor familiar. Mientras mas dias pasan Gabby continua cerrandose en su rutina. Y esta rutina aunque es constante en muchos aspectos ( ir a la escuela ir a la terapia ir a natacion ir a soccer) tambien es una rutina que con poco se rompe y cambia no siempre en la mejor forma:

En este diciembre ( 2014) al salir de vacaciones de navidad, la rutina se rompio... no hay escuela, no hay soccer, natacion no es constante porque no siempre podemos llegar por la nieve y hielo en las calles....
Gabby no entiende estos cambios y su forma de lidiar con la situacion es refugiarse en el ipad....
Luego el Ipad continua siendo su mayor motivacion para concluir actividades, pero luego se vuelve obsesion.
Gabby no puede comer sin tener el ipad junto a ella. Gabby no puede ir a dormir sin el ipad prendido. Gabby no puede tener una sesion de terapia sin ipad......

Al regresar en Enero a la escuela, el ipad toma un descanso, pero Gabby sigue teniendolo presente...
y ahora despierta a las 2 am... porque sabe donde esta cargando y no puede dormir sin el....
Cuantas noches y mananas hemos despertado encontrandola con el ipad prendido su dedito en el control de la pantalla.....