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Accepting the Unacceptable



I am a special needs parent and I accept that my child has a disability.

I hate that fact that this is our reality.
I don't like to spend my days in therapies, doctor appointments or constantly researching about my child's disability.
I hate telling people that my child is different my heart aches every time.
I hate thinking about my child's future because I know that I can never die.
I hate knowing that my child will probably never have a "typical life" whatever this means.
I hate having to explain my child's disability to people over and over again.
When you have a typical child you don't walk around explaining your child’s  behaviors to people.
I hate it all.
I could probably go on and on about all the things I hate about my child having a disability. 

But.

I accept it. 

I accept the Unacceptable.

You don't have to be OK with the difficult things that come with your child's disability. 
You can hate the fact that your child can't do this or that.
But please don't get stuck there.
As a special needs parent you are allowed to hate it all.
We do have to learn to accept the Unacceptable.
The only way we can help our child is to accept their unique world.
We have to embrace all their differences.
Learn to love their world.
Join their world so they can come to ours.
We have to be willing to change the world for our child.

Today and everyday.

I accept you Autism.

I accept you Epilepsy.

I accept you Fragile X Syndrome.

You are Unacceptable because you make it so hard for me to connect with my child, but you also make him unique.

You have taught me to love all the differences, and to never take the little things for granted. 

You have taught me that consistency is key.

You have taught me to celebrate every milestone no matter how small.

You have taught me that different is not less.

You have taught me that is okay not to fit in when you were born to stand out.

You have taught me to see the able not the label.

You have taught me patience.

You have taught me to see the world from a different angle.

Most of all you have taught me that love needs no words.



So today and everyday I accept it all. Yes is Unacceptable.It's difficult and is not fair. We don't know why were chosen to live this way, but maybe just maybe we were chosen so we can change the world one piece at a time. 










Find us on Youtube:https://www.youtube.com/watch?v=G-AsQEIpZ-s&t=53s


This amazing Template that I am sharing with you all can help parents create a profile that they can share with their child's educators, and therapists. It can help educators get a glimpse of the child's personality as well as their diagnosis, needs, and strengths. Also established a positive form of collaboration between parent and educator. IEPs and assessments are huge and full of so much information that not all the staff working with your child might get a chance to understand your child's needs, or personality.  Therefore printing this sheet out and handing it out to the people working with your child can benefit tremendously.
 I have attached the link below feel free to add your child's own unique needs and share with your child's educators, therapist, bus drivers, paras etc.  

https://docs.google.com/document/d/1ZA3g6yH3mYb6DanIKRPNmqz7cwCqqpxgldwQU36vymQ/edit?usp=sharing

Our special needs world is like night and day compared to typical parents.

On the hard days when everything reminds me of how difficult having a child with a disability really is I envy the parents that get to live a life where they can simply pick up and go.
I also realize how different our lives are. Is like we live in total different worlds. It's like night and day. Our newborn face has not yet faded. We still have sleepless nights, we still get up every two hours, and we are still carry our diaper bags. 

The quick trips to the grocery store, going to the bank, eating in a fast food restaurant or even pumping gas at a gas station take so much time and effort.  
So many little things that as a parent of a child with special needs I can not do without some extensive planning.
The other day I had to leave the bank as soon as I got there.
Why you may ask? 
 I know my child and sometimes a simple 5 minute wait in a line will trigger a full blown meltdown so I leave before it gets to the point. Not because I am embarrassed of my child acting out but because it overwhelms him to the point where he losses control where he will try to hurt himself or even hurt me. It becomes a safety issue for both of us.
    
The trip to the gas station gets me every time. 
I sit in my car and stare at all the people coming out of their cars and look at how simple it must be to just walk in and walk out of the gas station.
Pumping gas at a gas stations takes us more planning than a trip to Disneyland.
This is a serious matter.
I have to make sure I take the money out, and have it on hand
their is no time to open a wallet.
ATM is definitely preferred but their is those times when the little note is posted to pay inside.
 I have to carry Emmett's blanket his blanket is his comfort he blocks out overstimulating light with it.
 Hold Emmett's hand he will not follow me no way not safe. 
Watch out for cars Emmett has no sense of awareness about cars.
Remember what number of the pump,
Take Emmett out, and let him know we are going.
Open the doors for him, and sometimes he has to be carried out because his legs refuse to walk. 
Yes I still carry his 45 pound body.
 Lock the car.
He gets overstimulated by to many people walking at the same time so he will sit and watch people walk. 
A little inconvenient if your in middle of a parking lot.
When we finally pump gas after 20 long minutes I feel like I conquered the world.
Like there should be an award for it. "Mom pumping gas with child today". lol.
So yes! I envy those parents that don't need to plan for stuff like this. 
It's so difficult sometimes it doesn't work out and Emmett has a full meltdown getting in the car and getting off the car. 
Each meltdown will take about 20 minutes. 
Therefore a simple trip to the gas station can turn into an hour trip really quickly. 


This life is hard thank you to the people that take the time to open the door for me while my hands are full with my child. 

To the people that are willing to hold my place in line while I chase my child.
To the people that smile and comment nice things when they see Emmett throwing himself on the floor, 
and to the people that think I should just not take my child sometimes we don't have a choice we can't get a babysitter to go pump gas or go to the bank, or a quick trip to the grocery store. It's just our life is not easy.



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.