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10 frases que no deberías decirle a los padres de un niño con Autismo o Necesidades Especiales



Criar un niño con Autismo o necesidades especiales es difícil. Pero aun lo que es mas deficil es escuchar las mismas frases inoportunas una y otra ves. Por eso quiero compartir con ustedes algunas frases que deberían evitar decirle a los padres de niños con autismo o necesidades especiales, por respeto y para no herir sus sentimientos ni ofender a sus hijos. 

1."!Dios le da niños especiales a padres especiales no a cualquiera!"

La verdad es que Dios le da a niños especiales a padres comunes y corrientes.
Los padres no se sienten mas bendecidos por Dios mas que ustedes.
Los padres preferirían que su hijo no tuviera ninguna discapacidad y pudiera vivir una vida sin terapias, especialistas, ni medicinas.  Pero la realidad es otra. La realidad es que estos padres an aprendido y buscado ayudas para navegar la discapacidad de sus hijos.

2."!El hijo de mi vecina tiene Autismo , te entiendo completamente!"

     Todas las personas con Autismo son diferentes y únicas. Solo con conocer una persona con autismo no te ase experto en el. Tienes que entender que todos son diferentes y que tal ves tu comparación ase sentir menos ala persona.

3. "!Pero si se ve tan Normal!"

    Esta frase la e escuchado miles de veces. Las intenciones son buenas de las personas que lo dicen pero estas palabras duelen y causan enojo. La realidad es que una persona con Autismo no tiene que verse diferente a los demás. Su descapacidad no indica que se vea malito solo se significa que su celebro trabaja diferente a los demás. Y ademas que es normal todos somos únicos en nuestra propia manera. Todos nos miramos diferentes. No esperes que mi hijo se vea malito para crear que tiene Autismo. Muchas discapacidades no son visibles.  

4. "!Ya mero se cura!"

   El Autismo no tiene cura y las terapias no son para curarlos solo son para ayudarle a navegar el mundo. Ni las medicinas o tratamientos lo van a curar solo lo están ayudando poco a poquito.  

5. "!Pero lo bueno que tiene Autismo y no otra cosa mas grave!"

  El Autismo no tiene cura y le dificulta la vida a mi hijo en muchísimos aspectos por el resto de su vida.
Mi hijo nunca podrá valerse por si mismo. Mi hijo necesitara de cuidados toda su vida. 
Imaginate tener un bebe por el resto de tu vida. Es difícil verdad?


7. "!Debes ser muy fuerte para lidiar con un niño con Autismo o necesidades especiales!"  


  No soy fuerte. Muchas veces me la paso llorando porque no entiendo a mi hijo y no se como ayudarlo, solo que darme por vencida no es una opción tengo que hacerme la fuerte y salir a delante. Ay momentos que ni los especialistas saben como ayudar a mi hijo es triste el saber que no ay repuestas para las preguntas que tengo sobre el futuro de mi hijo. 


8.  "!Lo siento mucho!"


    Sentir lastima por la persona no dignifica a nadie sino que lo reduce a la categoría de persona sin consciencia. Nosotros no necesitamos lastimas necesitamos compasión, entendimiento, y que nos escuchen. Necesitamos que aprendan sobre las necesidades de mi hijo y nos entiendan.


9. "!Yo mire a alguien con Autismo en las noticias y tiene un talento extraordinario ya veras que tu niño también lo tendrá!" 


    Cuando algo sale en las noticias es normalmente porque es fuera de lo normal porque son situaciones extrordinarias. Que mas quisiera yo que lo mejor para mi hijo pero la realidad es otra. Las personas con Autismo si tienen talentos especiales pero no significa que eso va a resolver todo lo demás. Mi niño tiene deficit en muchas otras areas que asen su vida muy difícil. 

10. "! Siempre estas usando el Autismo como una excusa!"
     El Autismo de mi hijo no es ninguna excusa solo explica porque mi hijo ase lo que ase. Ay momentos cuando el mundo alrededor es muy difícil para mi hijo el ruido ase que le duelan los oídos, o las luces asen que le ardan los ojos. En esos momentos yo como mama prefiero ir a lugares donde mi hijo se sienta cómodo con sus alrededores.  No estoy usando el Autismo como excusa solo estoy haciendo lo mejor para mi hijo. Por favor entiéndelo. Y entiende que no siempre podemos cumplir con tus invitaciones.




My chid's special needs has given us more than it has taken away.

I thought I would never get to this place.
The first year after Emmett's diagnosis I spent every second consumed in research and trying to learn everything possible about Autism and Fragile X Syndrome.
While also trying to learn about my daughter's Fragile X diagnosis, then Emmett again.
The epilepsy, Autism, Intellectual disability it was none stop train.
I was probably sleeping 3 hours per night. 
To top it off Emmett was not sleeping he was also running on no sleep.
I was consumed by the amount of appointments every week, and going all over the place trying to find the best medical, and therapy team for Emmett.
I had worn myself out.
I was tired and felt overwhelmed.
The stress was worth it though it will always be worth it. 
Nothing in life comes easy.
Everything was accomplished I found Emmett all the services he deserves and needs.
Emmett has an incredible team that believes in him and works really hard to teach him the way he learns.

I got use to our crazy schedules, the therapies, and appointments.
They have become our new normal.


I recall hearing about the process a special needs parent goes trough after the diagnosis.
My therapist"yes I had to resort to therapy for my own mental sanity" would ask if I felt  anything like denial, guilt, regret, or if I was grieving.
Grieving I thought was crazy my child was not dying. 
Little did I know that I would began to grieve within the next few months.
 I never thought it would happen to me.
When Emmett was born I had a vision of how he would be, I dream he would play sports, go to school, have friends, get a job, move out, and have a family one day.
Every one of those visions came tumbling down.
My therapist told me to write down all the dreams I had for Emmett before his diagnosis then look over them and throw them away.
Then later when your ready write down all the dreams you have for Emmett after knowing his diagnosis.
So I can say I am ready I have written my goals and dreams for Emmett.
Boy do I have a lot.
I have big expectations for my little guy.
I realized that regardless if you have a typical child or a special needs child you will still have dreams and goals for your kiddos.

Yes he will still play sports ofcourse with some accommodations.

This year Emmett played in a special needs baseball team.
I can honestly say it was the best thing ever!
His team mates are so incredible.
They don’t care about the score, or who plays better.
All they care about is to be part of a team, and they were so welcoming to Emmett they accepted him for who he is.
Yes Emmett spent most of the game playing with the dirt on the ground or eating snacks.
We never got rude stares or comments when Emmett wasn't having it.
Instead we got support we got smiles.

Yes he will still go to school.

Perhaps not the school I had envision in my dreams but who cares at the end of the day all that matters is that he is happy, and learning.
His friends are usually his siblings or his therapist.
I am ok with that those people make Emmett happy.
He might not ever move out but I am okay growing old next to him.
He doesn’t need to have a family of his own he already has a family.

It took a long time for me to realize that my son was falling behind, and that he might never catch up with his peers.
I have accepted the fact, and began to look for all the amazing things Emmett does.
The way he sees the world is so careless and free.
He sees people's true personalities without ever talking to them.
I find that to be amazing.

I still want nothing but the best for Emmett.

 I am not giving up on him I am just accepting the things I can't control and embracing the things I can.
I feel more calm, and content with my life.
I can say I am happy for our family.
We get this incredible opportunity to see the world in a way few people get to experience it.
I am ok with my son having special needs.
Yes I still have stress, and Emmett is still struggling every single day.
I still cry on those hard days, or when Emmett has some regression.
Yes if their is ever a cure for Fragile X I will take it. 
Their isn't anything I wouldn't do to make Emmett's life a little easier.

But the amazing thing is that I am no longer crumbling at every single struggle.
I have become stronger than I ever thought possible.

I walk out of appointments with specialists without a single tear in my eye.
Whereas before I would break down every single time.
I have become a pro at Emmett's combination of medications I literally have memorized them.
It has made me realized how precious life is and to treasure every single moment.

This special needs life has made me superhuman.


Happy Father's Day to the Special needs dads.

Happy Father's Day to those dads that go above and beyond. 

I want you to know that,

You are patient.
You are kind.
You are playful.
You are strong.
You are brave.

You are the best Father!

Everyday you wake up feeling overwhelmed by the amount of therapies, and appointments you are missing out on.
You are trying to juggle the stress of work, your wife, your typical kids, and your special needs child all at the same time.
You are an important part of our family.
You worry about them and you want nothing but the best for them.
You overcome those feelings and go to work every single day.
You work hard.
Always putting your families needs before your own.
You are the provider of our family.
Without you we will not be able to do any of the things we do.
You make it possible for our special needs child to receive all the services he needs, medication, and special bonding time even though you are tired at the end of each day.
You make time for every single member of our family.
Today on Fathers day and everyday  I want to thank you for every  little and big thing you do for our family.
I want you to know that,
Nothing goes unnoticed.
Although sometimes you mention you would like to do more for our family I want you to know you are doing enough.
Actually I want you to know
Your doing an incredible job!
You are definitely rocking this special needs dad thing.

Happy Father's Day Juan! Today and every day.




Siblings discovering Autism

 I remember siting down with our  two older children and telling them that their baby brother would be different.

Emmett has Autism.  

A year later we sat down again we told them he not only has Autism but he also has Fragile X Syndrome, Epilepsy, Sensory Processing Disorder and Intellectual disability. 
They seem to understand and did not have any questions at that specific moment.
 We made it very clear that we would be honest and answer any questions they had in the future.
The questions slowly started to come in.

Why doesn't my brother talk?

Will he ever talk?

Will he ever  have a conversation with me?

Why doesn't he play?

Why doesn't he like to be hugged?

Why doesn't he give us a kiss back?

Why does he have so many appointments?
Why does he take medicine everyday?
Why does he go out of town for his appointments?
Will he ever go to the same school as me?
Why doesn't he turn when I call his name?
Will he ever ride a bike?
When I was Emmett's age did I do that to?
 Etc.  Ect. 

So many questions and no specific answers.
Every time I get one of these questions I get a knot in my throat my eyes fill with tears as I search for the right thing to say.
Their is no manual for this stuff.
I answer their question with a "maybe he will one day" or
"your brother is different than anyone else therefore he does things at his own pace".
         

As Emmett gets older it gets more difficult for them to understand why our life is the way it is.
Why Emmett is so different?
Why our life is so full of the unknown.
We all don't know what the future looks like for Emmett, and it's difficult to digest.

They see kids in the playground half the age of Emmett doing so many things that they learn naturally. Sometimes they see other kids on the Autism Spectrum more high functioning than Emmett and wonder why their brother is not like them.

It's difficult for them to see their brother working months and years to accomplish the same things other children are doing.
 I see their little eyes looking at them and filling up with tears, and then looking away pretending not to see them.
Then as we get in the car I get those comments "wow did you see the kid he was talking to other kids?" or "wow did you see the kid playing with the toy so nicely how did he learn that?".
It's painful to see them discovering the special needs world, but it's also amazing to see them appreciate all the little things in life.
       
They don't take anything for granted, they acknowledge every little thing Emmett learns with such happiness.
They know how hard his brother works everyday and they thank him for it.
The love for their brother is unconditional, they want the same thing for their brother as everyone one else.
They want him to be included in society, and for him to be happy.







Special needs birthdays are bittersweet.


Emmett's 1st birthday cake smash session.

Children's birthdays are often a time of celebration,
but for our us it has become a bittersweet moment that reminds us of all the things Emmett still can not do!


Ever since Emmett's first birthday my joy for birthdays has disappear. 

I recall Emmett's first birthday like it was yesterday. I decided to have a cake smash photo shoot a few weeks before his birthday party.

I set up the backdrop just like I had set up before for my other 1 year old clients.

I got him all dressed up, and  got him a mini cake.

It took me one second to realize that my one year old son couldn't sit up independently, stand, or even sit up with support.


 His body was loose Emmett couldn't support his body not even for a second, and he wouldn't even look or touch the cake.
Who was I fooling perhaps I wanted to believe he could sit up all by himself.
 Emmett wasn't even eating solid food he would throw up every time I try to feed him
Gerber.
He was not going to eat the cake or even try to touch it.
That day broke me.
The cake went back in the fridge and I saw my daughters face of disappointment as her
 baby brother struggle.

A week later Emmett had his first seizure.

On his 2nd birthday we received most of his diagnosis and he got his second seizure.
First it was Autism, then Fragile X syndrome, epilepsy, and sensory processing disorder.
I was told by a neurologists that he might not walk until he was 4 or 5 years old and that
he might not ever speak properly whatever that means.
 Their was no birthday party on his second birthday and third birthday we decided to skip
 out on the birthday celebrations it was to difficult to take in.
I couldn't bare to sit there in front our family and pretend  like everything was Ok.
 Because in our reality our whole world was tumbling down.
Our beautiful baby was struggling we would spend most of our days at doctors offices
getting told that his life will not be the same as  his typical peers.

All people could tell me was that he will grow out of it. It has been 

4 years and he has not grown out of it. 

He is still struggling!

Honestly people with Autism or Fragile X syndrome don't grow out of it!
He still can't talk he losses and gains the same words.
 Emmett has a grand total of 4 words in his vocabulary that took him 4 years to learn
and years of therapy and daily medications.
 It breaks my heart to hear one year old babies say more words than Emmett.
Sometimes I sit there and count all the words and different sounds other kids the same age
 as Emmett say and I want to cry of happiness for them, and their parents.
I thank god for allowing those parents the privilege of being able to have a conversation with
 their child.
I do not get the same  privilege.

Sometimes I wish I knew what Emmett is thinking or to be able
communicate his basic needs.

Sometimes he will say mama and some days he wont. I've gone weeks
without hearing it sometimes months, and even years.
 I try not to let it break me but is so hard to live like this.
Here I am 4 years later.
His birthday is so difficult, I have to get my game face on, and put on
my best fake smile so I can get by.
I don't look forward to him getting older. The annual check ups, the medication adjustments, the testing, and the evaluations.
 They are a constant reminder that he is not like his typical peers and
that he's not just a little behind he is years behind.
The meltdowns are becoming more difficult to control.

One day  I will not be able to carry him or hold him down to prevent him from hurting himself.
The older he gets the more people around us began to realize that he is severely affected by his disability.

March 11, 2015
The "he will grow out of it" comments are turning into "it was in god's plan".
The faces of judgement are turning into faces of pity.
People pity us because they feel bad for us.
We do not need anyone's pity we just want to be included and accepted.
I am starting to realized that we can no longer hide behind the terrible twos or threes we have to come out and show the world how to accept our kiddos for who they truly are the good and the bad.

Emmett's 4th Birthday photo-shoot.



10 Tips to help you Navigate Disneyland with a Special Needs Child




This is our second year going to Disneyland with Emmett. As some of you are aware Emmett is diagnosed with Severe nonverbal Autism, Fragile X Syndrome, Epilepsy, Intellectual Disability, and Sensory Processing Disorder. Emmett really enjoyed Disneyland last year so we decided to try again this year. We also decided to try to take him to Disney California as well all in one day a little crazy on our side. Last year he was 2 years old he was way to small to ride most of the rides but this year it was perfect. Emmett will be 4 years old next month so he was able to ride all the rides that his 7 year old sister Amaya wanted to ride. I wanted to share a little about our experience and give you all some 10 helpful tips to make your special needs family experience more pleasant. 

1.Get the Disability Pass 
Once we got through the gate we headed over to City Hall. The line at City hall to get the disability pass was huge we waited about 45 minutes. I guess that's what happens when you come to Disneyland on a 3 day holiday weekend.  But don't freak out and wait it out it will be worth it trust me! The cast member at City Hall just asked us to tell them a little about Emmett. No paper work required legally they cannot asked you for any type of proof of your child's disability. I told them his diagnosis and she tried to interact with Emmett asked him for a high five and tried to get his attention. She was really sweet. Then asked us if it would be easier for Emmett to stay in the stroller until he had get on the ride we told her yes and that Emmett does not do well outside of the stroller. So she put a red tag on the stroller that said that we were using the stroller as a wheelchair for Emmett. 

The red wheelchair tag was a huge help because Emmett never had to leave the stroller unless it was to get on a ride and in some rides we were offered help to transferred him from the stroller to the ride. In the ride Is a Small World they even offered the boat that allows you to put the stroller with Emmett inside and they strap down the stroller. We did not use this service Emmett was OK with sitting on the boat next to us. 

At first we were very confused on how the disability pass worked we didn't know were to go or what to do, but after asking and getting lost we figured it out. 
The disability pass is linked to your ticket I believe you can have up to 6 people in your party. That meant that everyone in our party got to go in with us and does not have to wait in a separate line as long as Emmett can ride the ride. You have to check in the main hub of each park section and get a wait time and return at that time. The wait times were long like I mention earlier it was a 3 day weekend so it was very crowded. Our longest return wait time was 2 hours and our shortest was about 30 minutes. You can also use the Fast Pass line it works for the disability pass. On the plus side we got to walk around while we waited. Some rides did not require a return time. We simply went through the Exit where it has wheelchair accessible sign and we went right in. 


2. Prepare and Pack
I would highly recommend to pack a little bit of everything wipes,pull ups etc. Emmett requires medication so he had a separate bag just for that. The diaper bag included some of Emmet’s favorite snacks almonds, chex mix, and his sippy cup, water, etc. We also packed extra clothes for both of our kiddos. Emmett’s favorite blanket, and IPad. So just go ahead and pack whatever your child may need.


Things to pack if your Child has Sensory processing disorder 


Noise cancellation headphones: We did not used them at the beginning but towards the middle of the day Emmett used them in some of the louder rides,and they were a complete game changer. 

Comfort item: Emmett’s favorite blanket also help him stay calm which he took on the rides with him. Perhaps take your child favorite item. 

Sensory Compression suit: Emmett wore his compression suit all day since the moment we left the hotel. The Compression suit aids with shoulder trunk and hip stability balance coordination, and increases body awareness. He usually wears his suit when going to a new place or family members homes. We notice he is less anxious when he wears it and is willing to explore. It keeps him calm and decreases his need for sensory input. Emmett uses jumping to calm his body or pacing this definitely helps with that and allows him to sit and have a calm body.

Weighted vest: Emmett does not have a weighted vest but if your child does i would definitely recommend taking it. 

Chewy: Emmett uses his chewy on a regular basis. He uses it for Oral stimulation, and to redirect him from chewing his hand or fingers which he no longer does thanks to his chewy. He is less anxious when he is using it and has a calmer body. So if your child uses one don't forget it you will definitely need it. 


2. Stroller not a wagon. 

I made the huge mistake of not looking into their regulations on wagons. I guess pull wagons are not allowed only push front facing wagons. So we showed up to the huge line to enter the park and we were approach by security and we were told that it was not allowed. We ask if we could leave it in storage and we were told no. Their was no way we could go back to the hotel it was going to take way to long it was a 20 minute walk and car was not an option since we took the shuttle. The traffic was crazy and the shuttle wait time was about 30 minutes to and from the hotel so we were looking at an hour. Dad waited for the shuttle for about 30 minutes and nothing so he decided to fold it up and leave it at the front entrance at security if they were not willing to store it. Emmett was not having it this kid loves that wagon so when we folded it up and put it away he was crying and went full meltdown mode. This mama had to carry his 42 pound body for almost an hour while waiting for the line through get through security. It was not our brightest moment and we all wanted to have a meltdown too.Thank god my sister and brother in- law came with us they waited in line with our daughter while I went back and forth with Emmett, and Dad waited for the shuttle that never came. To make the long story short once we enter the park we went to rent out a stroller and long behold they took our wagon and stored it for us at a cost of course but at the point no one cared. 


3. Electronic Device

Yes I said it. Pack an extra phone or something that entertains your kids. I do not allow Emmett to have to much screen time but Disneyland is definitely the exception. The crowds were crazy and can trigger anyone's anxiety so we had to give in and keep him entertain while we cruse around. On the bright side he didn't need to use the phone when he was riding a ride he enjoyed.


4. Do your Research

Go to the Disney website and check height requirements and make a list of all the rides your child can ride or you think they might enjoy. Start of with the rides you know your child will enjoy first.
Emmett enjoys the rides with water a lot. Our biggest issue was getting Emmett of the ride. He began to have meltdowns when getting of the ride. So we decided to let him know when we were getting on and off the ride (verbally) and give him a reinforcer to get him off the ride. We started by giving him popcorn then we had to give in and give him the phone or iPad so he could watch his favorite show he transition more peacefully.  Perhaps take a few sugar free lollipops ;)


5. Take Breaks

 This was hard to do there is so much to see and do, but breaks are necessary for the kids sanity. We sat down and ate lunch.Perhaps choose a calm less crowded place. We took bathrooms breaks. Although my biggest complain was probably the bathrooms. Some were very filthy and not very disabled friendly. I heard there is companion bathrooms but I didn't not find any and the line for the bathroom was bit to much. Companion bathrooms are necessary for Emmett he gets overwhelm in public restrooms and he does not use a changing table he is scared, and to big for them so he has to get changed standing or in the stroller. 


6.Take an extra pair of hands if possible

Having my sister and brother in law made our experience more pleasant especially since we took our 7 year old with us. They lighten the mood when we had the stroller wagon incident and gave some extra attention to our daughter. Helps us stay calm and reminded us to take some photos to capture those special moments. Dad and I took turns riding the rides with Emmett so we could spend time with both kids. 


7. Meltdowns

You will probably not leave the happiest place on earth without a meltdown. So prepare yourself for it. Yes, people will stare and it's OK! Some people will also be nice about it. I'm not much about labels but it did help to have dad wear a shirt that raise awareness about Fragile X Syndrome that my sister custom made for him and Emmett. He even met a family that knew what Fragile X Syndrome which was awesome. Emmett was also wearing an Autism awareness shirt which help people understand why he was acting the way he was. 
Luckily Emmett only had about two full meltdowns the Wagon incident, and when he got on and off the Alice and Wonderland Ride. 
Heck even my 7 year old got a bit irritated towards the end. 



8. Disney California Adventure 

I will explain briefly our experience there. The wait time for the Radiator Spring Racers was about 3 hours it was brutal so we check in at public relations and went cruising around for those 3 hours we got to ride the Little Mermaid Ride and the Jumping Jelly fish, Monsters, Inc, Mater’s Junkyard Jamboree. We did not use the disability pass except for the radiator Spring racers. They made us wait in line but the wait line was about 30 minutes or so. 
Emmett and Amaya’s bucket list was the Radiator Spring Racers ride so we had to wait, and let me tell you it was worth the wait. Emmett enjoyed it so much he was so excited like I have never seen him before. He is definitely an adrenaline junkie. Amaya loved it too she said is her new favorite ride. 


9. Should I go to Both parks?

Personally, I wasn't a big fan of Disney California Adventure and my kids didn't look very interested in exploring it. It is way smaller than Disneyland and more for teenagers and the older population.The only reason we would go back to Disney California would be to ride the Radiator Racers ride my kids love that thing. Disneyland is definitely our favorite and we will probably will be back next year probably not on a 3 day weekend. 
Meeting the characters:
Last year my daughter Amaya was all into meeting all the characters she even made an autograph book. You can print some out for free online. But this year she was over it and didn't think the wait was worth it. She also tends to get a super shy when having to talk to them. Amaya has Fragile X Syndrome as well and it makes her super shy in social situations mostly with unfamiliar people.  
Emmett does not care for any characters he is more into the rides so we do not spend time trying to meet the characters. 
The Disney Parade:
This was our first time seeing the parade it was really beautiful the only down side is that it was an hour of standing in one place next to a bunch of people literally shoulder to shoulder. Emmett had zero interests in it he glance a few times but that was it. Amaya loved it was a great opportunity to see the characters up close without having to talk to them. 
Firework Show :
The firework show was cancel due to the weather being windy. We did the fireworks last year and it got a bit to loud for Emmet so we had to leave early so this year we had decided to skip out anyway.


10. Enjoy

Have a great time maybe make a small list of things or rides you must ride. (Bucket List) We make a mental note of one thing we must do at Disneyland my daughter chooses one ride she must ride. We try to do those things first that way we know our bucket list is complete and anything extra we do is a plus. 
Good Luck and have an amazing time!







Receiving the second Fragile X Syndrome diagnosis



     
Second Diagnosis



Sometimes It feels like life is testing us to see how much we can handle before we break.
The waiting room visits continue, the sadness after each and every diagnosis never ending.
3 months after Emmett's  FX diagnosis we received Amaya's FX diagnosis too.
Once again same clinic, same doctor, but not quite the same feelings. Their was no way FX can hit us twice I told myself. I had researched Fragile X Syndrome in girls and most of the information was that they were carriers. I had told myself that the worst case scenario would be her being a carrier like myself. God couldn't be so cruel and do this to us twice.  I kept begging God not to do this again but it was obvious my heart already knew what was coming.
 I was hoping the odds would be in our favor, but boy was I wrong.
Amaya not only tested positive for Fragile X but she has the Full Mutation.
I was pretty much heart broken again.  I asked myself so many questions.
Why us again?
Would she has similar difficulties as Emmett?
How would I raise two children with FX?
How did I not noticed sooner?
So many questions went through my head that day, but the geneticists reassure me that girls with FX can live a full life, go to college, have a career, drive a car, get married etc. I believe it was at this moment that I realize that God indeed did this to us again.
Juan was just as surprise as I was. He was speechless this time around. Juan asked the geneticists if he was sure and he told him their was no mistake and showed us the labs. A we saw does numbers we felt so lost. We walked out of the clinic for the second time heart broken.
Shortly after driving away Juan and I were down the street from the clinic when Juan crashed into the car infront of us. It was a minor crash and no one got hurt except for my car. I had asked him if he was ok to drive and he had told me he was.  He was distrated thinking about Amaya having Fragile X Syndrome. Two kids with Fragile X Syndrome he said wow! I knew at that point that we needed to take a few minutes and let it all out because we  were both not ok. We were disappointed in God, and in life. We drove to church and screamed at God for a few minutes and went on our way.
I truly don't believe God gives special kids to special parents. I hate hearing people tell us this over and over again. I sure the heck don't feel special I felt like I was being punished over and over again.
I realized that no matter how much you try to prepared yourself to hear these news you are never prepared for how it feels.
As the months go by I've come to realize that both of my kids are perfect and although they both have Fragile X Syndrome I will not let a diagnosis define who they are. I will come up stronger than ever and I will embrace all the positive and negative obstacles that come with having Fragile X. I will ask God to give me the tools, and strength to be the best Special Needs parent in this world.
Amaya is one of the smartest, caring, and lovable individual I know. She has taught me the real meaning of life. She works so hard each and every day. The odds do not define her. Although sometimes her anxiety is way more than she can handle she always gives it her all.

                                       Amaya's Update:

Amaya is very high functioning the complete opposite of Emmett. She is a 2nd grader that is  mainstream and is fully included at her school. I moved her to a smaller school setting at the end of Kindergarten because the bigger school setting and large environment was to overwhelming for her. She was having a difficult time making friends and she was performing below her ability due to social anxiety.  She did have some speech delayed as a toddler, but was denied services at the time. Ofcourse I was told I was an over reacting first time parent and I believe it. But I guess now it all makes sense. At the moment the only FX related issues she is having is severe anxiety, extreme shyness in unfamiliar places or situations which is very common in girls with FX. Ive often get asked by doctors why is she so high functioning? I truly believe that her positive environment and her participating in HeadStart since the age of 3 helped her tremendously. Amaya and I have always address any learning challenges head on. For example she was having a hard time learning her ABCs as a toddler I spent the whole summer teaching her and making sure she exceeds all her challenges.