Day 1 (2018)

National Down Syndrome Month....

What can I say that it hasn't been said before?? How else can I bring awareness to this diagnosis that lives in my heart?
I guess just by sharing with you my love and experiences with my Sunshine and maybe you'll get an idea, warm your heart a little and share the love, respect, and hopefully teach your own kids to be compassionate, teach them to be inclusive, teach them to respect what they don't know, and to help kids like mine when they come across in their lives.

So here we go.

I knew that Gabby had Down Syndrome since I was pregnant. I did all the testings available. I think for us it was the best decision ever. I was able to mourn the lost of a kid who would'be "normal", and with that the dream of having a kid doing the stuff the other kids would do... all the milestones from birth and beyond, the birthday parties invitations, the sports, the dreams of a wedding, the trips.... so many things I thought back then....
I did cry.... probably for a week.... and then I put my big girl pants, and I started researching what to do.
 I read may books, many articles online, and I learned about Early Intervention.
I needed to be ready, and get my confidence back, I needed to feel I was going to be able to provide my baby with anything SHE (yeah with the diagnosis the lady slipped the gender... I wanted a surprise...) was going to need and how Was I going to be able to provide it.

I was scared, I was nervous, I felt alone, I felt devastated... Did I mention how scared I was??
At one point during my pregnancy.... I went to my my backyard... and blew bubbles..... just that... silly, bubbles.....

No reason... but at that moment It clicked..... I was going to be a mom.... I was going to need help... it was ok not to know because no one comes with instructions, my mom, the angel she is, talked to me every day saying how much she loves ME, how good will it be once the baby gets here, how much my whole family was loving HER already....

the day that Gabby came to my life... OMG.... that was the day this scared girl became a fierce MOM...

The moment her hot body was put on top of my exhausted one.... I made a promise to her that I was going to have her back every single moment of her life.
I was so grateful she chosed me to be her mom.
I promised to love her forever....

we keep blowing bubbles every so often....

I still feel tired a bunch of times...

I'm still scared, but in a different way...

and I know in my heart that the tears I cried when I first got her diagnosis were necessary at that moment. I don't feel guilty for having to cry back then... because she is teaching me a new kind of love.
This love is pure, innocent, joyful, silly, crazy, unexpected, strong and more than anything unbreakable.

I'm lucky.  I'm incredible lucky to have Gabby in my life.

de regreso!

Han pasado muchos meses desde la ultima vez que me anime a escribir.

Estas vacaciones de verano me dieron la oportunidad de darme cuenta cuanto extrano escribir y compartir mis cosas... bueno algunas de ellas claro!

Gabby ahora tiene 13 anos!!! y sin duda esta actuando como una adolecente.
la mayoria del tiempo olvido su edad y que es normal que ella actue como lo hace,  es dificil porque llevamos tantos anos trabajando en su comportamiento por su diagnostico que estos cambios hormonales a mi se me olvidan.
pese a eso.. Gabby es mi angel y mi companera incondicional.

hemos pasado 2 meses muy contentas con la familia. Y por primera vez en mucho tiempo SIN terapias!!!
Ese fue el cambio mas grande. Gabby no ha tenido ni un solo tiempo de vacaciones nunca. Siempre hemos tenido cualquier terapia posible.
de lenguaje, motriz, arte, deportes, estimulacion temprana... siempre algo...
Y fue la primera vez que la vi tranquila y relajada.
y eso me dio a mi la oportunidad de estar igual... con uno que otro contratiempo pero la mayoria del tiempo muy contenta.

Gabby y mi mama me dieron la oportunidad de convivir con mis amigos practicamente todos los dias
y es que esta visita fue para llenarme de energia y estar rodeada de estas personas a quien extrano tanto
 Fue un verano muy divertido, muy intenso, y mas que nada lleno de alegria.

Gracias amorcito porque eres maravillosa

mama

pre teen???

There was a time where I thought that following all ABA therapy is all I needed to figure out Gabby... 

In theory that's absolutely right. Gabby's behaviors after many years using ABA were pretty predictable and many times I was able to use all the tools I've learned and apply them...

I was naive enough to think that's all there is to it... 

Except I forgot HORMONES.... Teenage behaviors.....

I know!! Come on!! I've work with them for years.... you'd think that's a natural thing to remember,

but maybe  I didn't pay attention, or maybe it's the fact that we deal with autism behaviors, made me think that we wouldn't deal with those kind of behaviors... maybe be excused of some of the usual burdens of life?

But sure our therapists just pointed out to me that after all, Gabby is just like any other kid out there, who will be having that part of life.

If you think about it.. yeah its annoying, but at the same time... Awesome.. another milestone of normalcy.

 She is becoming aware of her surroundings, she is starting to be ok to be around people even when her social skills are basic, and still needs support and constant direction, and care.

But the changes are there, she is moving forward. small HUGE steps that we celebrate and rejoice.

 you never know when the next silly thing is coming, when she will be sassy to mix and match her own clothes and shoes, or even demand a hair change....

I love her no other way around it. and I'm so glad I'm her mom

Gifts for the holidays...

December, LOVE this month. The decorations are out, the Christmas tree up and filled with loving decorations and ornaments we have bought through the years together, and many are made by Gabby. those are my of my most precious ones.

When I drive I have the radio on a Christmas station, love to hear those songs.

Happily enough, Gabby watches cartoons with Christmas themes too!!

But as always there is something I'm missing to feel like "everyone else"

You see, Most families stress about the holidays because their kids have a looooong list of presents to ask Santa. and you have to find the right outfit for the Christmas pictures so we can get the cards ready to send to all our friends and family...

In my case, there is no outfit, because she doesn't like any of the Stiff clothes for the season, and I don't blame her, neither do I. I used to dress up for the holidays, get my hair done, my make up and nails done. Not any more. I like to dress nice but comfortable because She will come kiss me and I love that she is comfortable doing it too.

We dont send the Christmas cards with a picture, because Gabby wont pose for a picture.. or at least we haven't been able to get a picture where she is not holding her ipad, or not using her headphones,

or just look up to the camera and smile.

but beyond those things... I think the one thing I miss the most is that Long list of presents. I have nothing in my list. Gabby never asks for anything. She is that simple and easy in theory.

As I walk around stores, I see those gorgeous dolls, with the pretty dresses and accessories,  I see the books, and the art supplies, and I see the many toys on displays.

Gabby hasnt ask for anything.

I know that I have to be really creative to find presents for her every year, but I wish I can give her something she really wants like other kids ask their parents.

I wish I can find the one thing she might like and hold for more than 5 minutes. and will bring a smile to her face.

People say careful what you wish for,... but I wish the best for her. everyday.

 

October and Down Syndrome

Yes I said it before. Gabby was born with Down Syndrome, I knew it way before she was born.
I did all the tests, the ultrasounds and even an amniocentesis test that confirmed that and the fact "it" is a girl.

I cried for the loss of a "normal" kid, I cried for the fear of what to do now. I cried for the fear that people would make fun of her. I was scared, I was feeling alone, away from my family.

My husband was my rock. He didn't know what to do either. But again... NO ONE knows what to do with a new baby anyways.
How many movies are out there making fun of the diaper situation? the bottle? the crying? the sleep walking in the middle of the night?
How many people struggle with their Regular kids from infants until adulthood?

We figure out well it has to be the same way. There are no manuals out there, Tons of books guiding you but non of them are specific to your own family or even one of you own kids. We are all different yet the same.

So when Gabby came to us, we were "ready" for the challenge, but excited for the adventure.

We started therapies as soon as possible, and I tried all different advises and recommendations from family and new friends.

Here we are 11 years later, 2 more diagnosis, and still learning to be her mom.
But one thing for sure... I wouldn't change anything about her.

Do I want her to be normal??  She is pretty normal to me!

Do I wish she didnt have Down Syndrome?  Maybe I did... I don't care about that anymore, she keeps me busy as it is now.

And I love her just as she is. She is my best friend.

Love you Gabby

Mom

First Communion with Special needs

 This was a very special weekend. A weekend I thought for a very long time it was never going to happen.
You see, to my knowledge most religions have a moment where they have some ceremony that re affirms their love and respect for God in front of their families, friends and their Chuch, temple or wherever they usually get together.

I remember as a girl, I was really excited for my first communion, I had special classes, learned new prayers, my mom  got me a beautiful white new dress, a hair piece and a veil, I had my bible, my rosary and my candle.
 I had my friends, my family and the church was full! then there was this party at my house where there was music, food and everyone was happy for me. Because I was able to do my first communion.

 The moment I know I was expecting a girl, I dreamed on her using frilly dresses, cute shoes, little handbags, I remember thinking I was able to do her hair and put bows and all kinds of girly things,
 Then I learned my girl had Down Syndrome.... things changed... but my dream was there, because  even with Down Syndrome, Gabby was still my little girl, and for a while I was able to dress her with the pretty dresses and shoes, with the bows and the girly baby stuff....

 And then... Autism arrived.... my dreams were there no more.... Gabby stopped liking those dresses and rather use a comfortable T-shirt and sweatpants, the shoes became Crocs and sneakers and the hair.... well.. I'm lucky if I can detangle it after washing it when she gets a bath.
   I tried to go to church she wouldn't stay....

"... The people behaves in a rare form when in Church. They sit and stand and kneel, they answer and sing. Sometimes the songs are happy and the music is really nice that makes me want to sing, there is also echo  and I love how my voice is louder and different with it... but people around me shush me... my mom  keeps telling me to be quiet... but its too long, I don't get what they are saying, is not fun.. they keep standing I think we are leaving but everyone sits down again... I'm so confused..."

 So I thought.... Could it be possible that my girl, the one under my believes was send to me by GOD, can be part of the Church with me? Could it be possible that she does her first communion?
and I asked... some people said yes sure why not, then others would say nah why bother with something else in her life, and then some others said... ask a priest they'll know better... and I did....

I asked a couple of priest in the US, and one that I thought because he was an acquaintance from back home and  said NO... because how can my kid would be able to understand the meaning of the Holy Communion Vs. a piece of bread. and does she understand what a SIN is? does she understand GOD, and evil and all those things that in a religion represent the good the bad..... Can she learn the prayers, Can she sit still during Mass?

 I google for other posts and websites about special needs and the church and I couldn't find anything positive. There are plenty of sites that have religion ideas to teach kids how to understand certain parts of religion...
But again. I'm just a mom, I'm not a therapist, I'm not trained to teach a lot of things my girl requires I need help.

And there it was, after feeling really upset, and almost give up that Gabby's girl scout leader, introduced us to Father Kindon saw Gabby for who she is and not for what she has.

I met with him and with open heart and mind he gave me the one answer I needed, with one word he restored my faith, and love to the religion I knew, for the reasons I believed.

In my mind, how can a kid with special needs be in someway a sinner? how can I kid like mine is denied to be with Jesus when I see my kid as the most pure of heart?.

And thats what he said too.

Gabby did her own training to get communion, With her therapists next to her, almost every day we went to church, She met with Father K. and practice Communion, practice learning about God and Jesus and the Virgin Mary. She even lights a candle.... or 10 .... and she hugs and kisses father K after she does her routine.... and we'll see you the next day.


Some days were adorable and cute, some days were intense, some others Gabby wouldn't go inside the church, some days she cried, some days she was so happy that she even hugs any other person who happens to be there! and more than I liked.... she would run out the door without looking back ready to go home...


And I still thought she cant be ready.... the doubt I had now was because I heard No many times... but Father K was always open to talk to me and ease my fears.

and we decided to go for it.

And here was the second hardest part of this.... who do we ask to come?
I have so many people I want to see this!!! I have so many people who WANTS to see this. Who love her and knows this is a big deal!
 and Husband said.... well if they know her and love her they have to understand that she doesnt do well with crowds...
But I still wanted to celebrate her.. this is a big deal!
But he was right, so In the company of her grandparents and therapists we went to church and Gabby was amazing!!!
She loved every minute of it.
I was, I AM very proud of her,

Even when she came home to hide in her room after all it was done....

Gabby may God Bless you every day, every night, every time.
May God gives me more time to love you and to help you in every step we have going forward in this crazy life.

I love you my angel.

Mom

Happy mother's day

We hear that every year, but really can we be happy?

 as a mom of an amazing girl with special needs I can say YES I am happy.  I love her so much, I care for her all the time, I worry about her present and her future. I get anxious thinking about the moment where  I wont be here to care for her.

 I make sure that her life goes as smooth as possible, that her needs are met, her wants are completed and that she has a smile on her face every single day.

 I have put myself on a second place more times than I can remember, but I don't care. I don't mind one bit about doing that for her.

 I have gone through so many meetings and doctors visits for her than for me in all my life.

 I have practically learned a new degree with ABA training to deal with Autism, that sometimes I regret not have done it during my college years...

I have skipped night outs and trade them for home dates with Husband.  Take in dinners instead of dining out and dress up.

I don't do my hair often, or manicures and pedicures.... but more than often I end getting a massage because she has pull my back again... 

I had been upset when she has dropped  on the parking lot and cars are coming in, or even walking to the grocery store and drop again because she refuses to walk in.

I have cried because she is not invited to birthday parties or considered to be part of a league with her classmates.... but then I remember how amazing is the feeling of her swimming laps at the YMCA with her instructor with no bubbles and that big smile that shows confidence.

I have enjoyed hearing her using her communication device to ask ( most of the time is a demand) for goldfish crackers or more cereal  and every time adding PLEASE at the end.

I have really feel proud of her when she was able to show off her counting skills, her spelling of new words and her reading of new words too.

I have loved to see her painting, biking, swimming, playing soccer, basketball and even tolerate me to do her hair with a new brush.

I love hearing her progress report and hearing how many goals she has mastered this month, and how many new goals are we going to add to her programs.

I love that despite her diagnosis she has people who loves her as she is and has friends who don't see the label and had ask for a playdate with her.

I love my husband who works so hard for me to stay home and be her mom.

and I love my family who pushes me to keep on going and NEVER give up

I love her teachers, I love her aides, I love her therapists and her doctors too....

It has taken a village to help me raise this kid... and honestly How can I not be happy?

worst feeling ever

For most of us.. seeing our kids sick is a heartache, but we do all we can to sooth them and help them get back to normal as soon as possible.
They cry and say where it hurts and you are aware of it and you can take them to the doctor knowing when the symptoms are getting out of your control but still within time frame to act and fix the situation....
We do the best we can....

The past 2 weeks have been a nightmare I dont wish on anyone. Gabby got sick...
A simple fever that first we thought it was because her molars were giving her problems.... then we though.. oh well its winter its probably another ear infection ( as she gets them almost every single winter)
but the fevers were constant and she barely was eating or drinking...
we took her to the doctor and she check for strep...
negative...

Gabby where does it hurts.. ??? is it your belly?... is it your head?? your ears?? your throat??

Gabby cant speak... and even when she uses her device to communicate, body parts are not her forte... she still has problems naming body parts and understanding pain.

so where does it hurts??? how does it hurts???
Tons of questions and no answers....

until we landed on the ER because she couldnt breath...
I was loosing my kid.... right in front of my eyes my daughter was struggling to catch her breath... her skin was beyond pale...

she had to be transferred to a better hospital and hooked on better machines to help her get the precious oxygen her body wasnt getting on its own....

Dear God!!! i prayed for a miracle... I posted it on all my support groups and ask for prayers...
it was all out of my hands and into God and the doctors to get me back my girl

Doctors coming in and out of her room all the time every hour and taking blood... getting IV fluids and antibiotics and whatever necessary medication needed to get her better...

going on 3 days with no sleep and no much more than staying by her side.. holding her hand covered in bruises from where needles were poked looking for a good vein ... not much success... she was really dehydrated
and finally a turn for the best.....

my girl is a warrior... and she has tons of people who know her and even those who still havent met her who were sending her prayers and all the best thoughts for her recovery were working....


I got my miracle.....  she finally came home.... and
I cant find enough words to say THANK YOU for another chance....

Gabby Honorary Captain of the basketball team

Go figure!!!!

Gabby with high school girls having fun!!!
That's what happen 2 nights ago, when Gabby got invited by the high school coach to participate as the honorary Coach for one night.
The girls were amazing with her. They let her shoot hoops ( yeah still high for her to actually reach it) they danced to Frozen, sat down when Gabby did.
they lower their voice when talking to her.
Seriously??? I was in awe of this team!!! This girls couldn't be more helpful getting my fears of a possible meltdown, or the big change of scenery chaos she could have. They were the best scenario I dreamed possible.

You see, Gabby has tried to participate in team sports, all adapted to special needs and she has a hard time when is a new environment, or when is too loud and mostly when there is too many people doing all different things at the same time.
Gabby usually shuts down and hovers in a corner, and as soon as she can she finds an exit door and runs out.

We have tried Basketball before and we were able to "play" for 30 minutes... the trick? we arrived those 30 minutes early and were lucky to find very few people in the court and one or two of the "buddies" setting up the place and willing to help her have fun..... a full season a very cute high school boy decided to come early to her practice and help her do it...
Gabby was smitten by the boy and she was all smiles during the whole time... Who doesn't like a cute boy cheering for you???

We tried baseball and that didn't go well at all. Cute guy wasn't there anymore. and there were tons of nets dividing the field for many kids to try to hit the ball or catch the ball... others were just running to bases... she wasn't having it and bolted out after a few minutes of just arriving.

Gabby does care of the order of things.. a sequence to follow, rules must be present and order and quiet must be followed.... why do we need to scream?? why everyone runs out on different directions??? why everyone has a ball???
But 2 nights ago... when the girls were nice enough to let her be in charge.. she smiled!! she took the ball all by herself and shoot.... and again and again and again.... the quiet cheers from the girls were for her... the smiles and proud looks were for her....

the smirk became a full smile....

and she went to the center when her name was called..... " and our honorary coach... Gabby C..."
high fives to each of the players....... Twice.....

De regreso!!!

Me he tardado tanto en retomar este Blog.... Pero quienes vivien en mi situacion podran entender que ganas no falta.. tiempo si.

En estos ultimos anos la vida de Gabby ha cambiado mucho.
Hoy es una nina de 10 anos!! esta "en cuarto grado" ( y si uso cuotas porque los estudios de ella no son generales como los ninos de su edad si no se miden de acuerdo a su progreso personal aun cuando va avanzando con sus companeros)

Hemos descubierto que puede leer varias palabra y oraciones, que puede contar ya algunos numeros y que los Backyardigans siguen siendo sus caricaturas predilectas.

Backyardigans ya han sido los favoritos por 8 anos consecutivos.... y aun me sonrio cuando ella pone cara de susto que puedo repetir los dialogos de cualquier episodio que ella tiene en el ipad....

Gabby me ha demostrado que su capacidad de aprender es grande y su necesidad de adaptarse tambien esta creciendo.

Gabby pertenece a las ninas scouts y ha participado con ellas ( de forma modificada ) en algunos eventos.

Tiene algunas amigas que han venido a la casa para "playdates" ninas que la quieren como es y la cuidan y procuran estar con ella en la escuela durante el lunch y recreo.

Gabby adora a su primo. Y tuvo tiempo de convivir con el cuando fuimos a casa a visitar estas navidades y conocimos al mas pequeno miembro de la familia...

Pero su primo y ella estuvieron juntos toda la visita. haciendo travesuras juntos y riendo.

Espero poder compartir mas momentos este ano....

Aqui vamos 2016....

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.....

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.....