World Autism Awareness Day 2013- Call to Action

Today is World Autism Awareness Day, and it is the Fourth year that we have been painfully Aware of Autism in our family. 

When Mikey was first diagnosed on January 30, 2009 just before his 2^nd birthday, the Autism rate at the time was 1 in 150, by the end of that same year the rate jumped to 1 in 110, then 1 in 88 and now only 4 years later, 1 in 50.   When I look at the numbers and the increase it is mind boggling and frightening.

Yet this is not all over every newspaper, broadcasted on every channel, everyday.   Instead what’s important is what is Kim Kardasian wearing, now that is front page news! 

Where is the outrage?? Where is the concern and support for these children?  Where is our humanity?  Why isn’t everyone questioning HOW IS THIS HAPPENING??!!!   This is not something that should only be questioned by the families directly affected but this is something that should scare everyone.   If the rate has increased this much in 4 years, what will happen in the next four years?? If you are fortunate enough to have neurotypical children, what is going to happen when they have children?  What will the rates be like then?  What will it take for people to stand up, stand together, take action and DEMAND that our government and its agencies provide answers! Provide support!  Provide REAL research!   Instead our government is cutting services that these children and young adults so desperately need.

These 1 in 50 school age children will soon become adults, many of which will not be able to work and support themselves, and the ones who can may not be welcomed into the work place, so then what?  For every penny that the government is wasting now trying to ignore, cover up and hide, they will end up losing when these kids are adults not able to contribute to society, there will be no tax dollars to collect from people who are unemployed needing government funding and support. 

My son is 6 years old, he is completely non verbal, he is still in diapers, he cannot identify not one body part, or one item in his environment, he can only follow simple one step directions, and like many children on the spectrum he suffers from terrible gastrointestinal issues.    We have to pay for special doctors, special diets, dietary supplements and unfortunately we will not live forever to pay for his care.  I drive him 30 miles each way to school every day, because there are not enough appropriate school programs for children like Mikey. There is nothing I would not do for Mikey, nothing I would not do to make his life easier, to give him a real chance at a normal life. 

This Autism Awareness month I ask all of you to truly take ACTION, write to your Senators/Assembly Members, ask them what are they doing to help our children and young adults with Autism, ask what their plans are for the future of these children?   Look for ways to bring Autism education to your local schools and community, and donate to local programs that support these children, there are 1 in 50 children counting on everyone’s help.

As I was driving my son to school today, I drove past one of those big blow up rats, for a union that was protesting unfair treatment, and I thought to myself, now there is an idea!  Perhaps we need to get a bunch of those rats and blow them up in front of the CDC, FDA and every government office that continues to ignore our plea for real help and real support.  Maybe just maybe then we will get some attention, hey it works for the union workers J.

50 Cent, Keep the Change!

I wasn’t going to respond to the 50 cent issue, I figured I am not someone whose message 50 will ever see, and was happy to see Holly Robinson Peete had responded.  Then I thought to myself, if I don’t respond then there is REALLY no chance of him seeing it, so why not?  Why not stand up for my son, whether or not it is seen by MR. 50, hey at least I will add to his Twitter flood ;).
As many of the parents in the Autism community, I was sickened by the tweets by 50 cent.  What sickened me more was that I had just finished watching an Oprah episode with him and thought, hey maybe this guy isn’t half bad, maybe he just had a bumb wrap.  I was giving him the benefit of the doubt and the truth is I enjoyed some of his music.  I grew up listening and dancing to hip hop music and I can’t deny bopping to “find me in the club.” 

So here I am just days ago watching this episode seeing him with new eyes, only to be blinded sided by these disgraceful comments about our children. 

My first reaction of course was disgust and sadness for my sweet innocent son, who is unaware that people would use his diagnosis as a derogatory term.  My sweet Mikey, who is 5 years old, non verbal and who has a heart bigger than anyone I know.  He is the most loving child I have met, he loves completely UNCONDITIONALLY, he shows love everyday with kisses and hugs and cuddles, and I may be biased, but he is one damn good looking kid.  If I sent a picture of him to 50 cent he might be a little jealous because the truth is he is way better looking than 50 cent ;).

It took me until today to realize something.  I feel pity for 50 cent.  As much money and fame as he has, he is still an insecure man trying to prove himself, trying to prove he is better, trying to prove that he is worthy by putting others down, to raise himself up.  As many twitter followers as he has, he let one person get to him, and then he had to try and belittle this person by insulting an entire community of people who he does not know.  He does not know the pain, the worry, the heartache a parent of a child with Autism goes through, he does not know the strength and power and resilience a child or adult with Autism has.  All he has done was prove once again that even if you have money and fame it does not mean a damn thing, that God will judge us all the same, and let me tell you 50 my son has more love, purpose and strength in his pinky finger than you do in your whole body.   You are an ignorant man who probably spoke without thinking, but nevertheless, in your position you should know better.  You let your haters get the best of you, because you have no confidence, you don’t believe you are worthy, you worry about what others think instead of worrying about leading by example, making a difference and leaving a positive mark in this world.

I will pray for your soul tonight 50 cent, because the truth is, as much as you have, you are so much worse off than my son and FYI only if you had a child with special needs could you feel the most unconditional love there is, and the truth is, you are not deserving of that.

This is what AUTISM looks like, and boy is he BEAUTIFUL!

Happy Mother's Day Mom!

Today on Mother’s day I would like to dedicate this post to the most wonderful Mother and Women I know, my mother and to all of the Autism Grandma’s who support their children everyday.

I am extremely blessed and grateful to have a mother who is with my everyday supporting me and my family with love and understanding.  I am well aware that this is not something that happens for every Mom who has a child with Autism.  I am so grateful to have such a wonderful mother, who has always lived everyday for her children and now also does the same for my son.

I am one of three children, I have two wonderful older brothers and my parents divorced when I was about 7 years old.  Although my father still remained an important part of my life, my mother took on the roll of a single mom and I know that this was not something easier for her to do.  We were fortunate to have a house that she fought to keep not to displace her children.  Even at the young age of 7 I realized how strong my mother was and how when she was determined to something she never gave up.   What I also realized is that she didn’t even know her own strength, that she was unaware of all she had accomplished and what a good person she was.  Whenever anyone would say she was a good mother or her children were good kids, she would always give the credit to God and luck, not taking any of the credit for herself. 

As far as I could remember it was me and my mom.  We did everything together, went on vacations, shopping, she would never leave me to go off on her own, she never needed “me” time, she never once complained that she didn’t get a break or seemed like she didn’t want to be bothered.  She was completely devoted and dedicated to being a mother, my brothers and I ALWAYS came first and it was the way she wanted it and we knew it.  I cannot recall even one night that she left me with a babysitter so she can go out and have some fun on her own.  As if taking care of three kids on her own wasn’t enough my mom was always there to lend a hand to anyone who needed it, we were known as the Hotel Rodriguez because if any of our family or friends ever needed a place to stay my mom would always welcome them to live with us. 

My mom was a working mom, and we were blessed to have good friends in our lives that would help her take care of me after school while she was at work. My mother was always so grateful for all of their help.  She always reminded me how blessed we were to have such wonderful friends and she always expressed her gratitude to them for their help.  She taught me that we need to be so grateful for everything we have and always reminded me how lucky we were that there are so many that had it worse.  This has always stuck with me, that feeling of gratitude and not taking things for granted.  Her reaction to accepting this help and her gratitude was such an influence on me, and I am sure she doesn’t even realize how much it affected who I am today.

I grew up feeling so much love from both my parents, and as it happens with many of us, it wasn’t until I had Mikey that I truly understood the love they feel.    When Mikey was first diagnosed and I was crying uncontrollably, all I wanted in that moment was my Mom, I wanted her embrace; I wanted her to tell me everything was going to be ok.  My mother always tells me that she hurts double now, because she hurts for me and for Mikey.  I think I finally understand what she means.  Just as I hurt when Mikey is upset or in pain, she hurts when I am crying or feeling sad, and on top of that she hurts for her Grandson who she adores.  My mom has always been a strong women, but when Mikey is having stomach pain or is upset, I can see the pain in her eyes as she looks at me feeling helpless and her grandson who she cannot help.   She is always there to encourage me to push me to do more and to assure me that we are going to get through this and everything is going to be okay.  I guess not much has changed in all of these years, it is still my mom and me most of the time and now not only is she devoted to me but she is also devoted to my son.  The only difference now, is that if it’s at all possible, she may love Mikey even more.

Even when I came up with the idea of the Butterfly Mission, she was with me 100 % telling me she would help me and that together we could help others.  She was so eager to get started, so eager to help other families, giving me the credit not realizing that I could not do it without her, without her every day support and help with taking care of my family, I would not have the time or energy to think of The Butterfly Mission and helping others.

My mother taught me so much growing up, but the most important things I learned from her was not through her words but through her example.  She taught me to be independent, to never give up, gratitude, and to help those around you who need it, but most importantly she taught me how to love my Mikey and to be a mother.  She will sometimes tell me she is proud of the mother I have become, but I am the mother I am because of her, because she taught me without even knowing it.

Thank you Mom for being you, for teaching by example and for loving me and my son unconditionally. What I ask of you now is that you KNOW what a wonderful person you are and have NO doubt that you are responsible for the children you raised.  Happy Mother’s Day, I LOVE YOU!

Autism Action Day!

Today is World Autism Awareness Day, however with the new CDC reporting of 1 in 88 children diagnosed with Autism, I am sure many of you are painfully “Aware,” of this terrible epidemic.
April 2^nd this year must be Autism Action Day! 

I feel fortunate to be surrounded by friends and family who are extremely supportive of Mikey.  I am aware however that as much as many of you want to help you don’t always know how to.

So today I ask all of my friends and family and everyone who wants to show support to a person with Autism to take ACTION!  The action I am asking you to take starts at home, to all parents who are blessed to have “typical,” children I ask you to educate them about Autism, to teach them compassion, tolerance and acceptance.  Teach your children that we as humans need to take care of one another and that some people may need more help than others and it’s our job to help them.  

Ask your children’s Teachers and Principals what at are they doing to teach their students about Autism and to promote acceptance and awareness amongst their student body?  With 1 in 88 children affected and a limited amount of schools specific to Autism, I am pretty sure that there are many students in your children’s schools affected with Autism.    Find out what your school is doing to support this community of students with Autism and how you and your child can get involved.  If you know there is a student in your child’s class with Autism, encourage your child to be friendly to them and if your children are young enough you can see if their parents would like to set up a play date.

One of my biggest fears for Mikey is that he will not have a friend or even worse be teased or bullied by his peers.  With the problem of bullying in this young generation, the likelihood of it happening to a child with Autism is even higher.   The thought of this happening to my sweet son makes me nauseous.   The only way to ensure that this doesn’t happen is to educate our children to help and look out for each other.  To teach them that even though someone is different, it doesn’t make them less.

Some of my proudest moments as a Mother and as an Aunt is seeing one of my nieces or nephews trying to interact with Mikey or offering to help or teach him something.  As I said, this is first taught in the home, and if it’s one thing I know, even if Mikey doesn’t make many, “friends,” he will always have his forever friends, his cousins and as he gets older I know that he will need them and their love more and more. 

As we all know children with Autism grow to be Adults with Autism and another problem in the Autism community is what will happen to these adults?  Where will they work and how will they be a part of their community.  So today I also ask you to ask your work place if they employ any adults with Autism and if not encourage them to start, or perhaps to create an internship program for these young adults so that they can become a functioning part of the community.  If given the opportunity these Adults have so much to offer to the workforce.

So please, today on Autism Awareness Day (and the days to follow) help me to prepare the world for my 1 in 88.

Mikey with his Forever Friends his Cousins :)

Three years later...

January 30, 2009 at approximately 1:30pm a psychologist came in my house and told me my son had autism.  Today it is 3 years since that day and some days I wish I can turn back the hands of time to the day before that day, before the words Autism flowed so freely from my lips. 

I can recall that day as it was yesterday yet it seems so long ago, it is hard for me to remember what our lives were like before January 30, 2009 . 

I recently was reminded of an email I sent to a client shortly after Mikey was first diagnosed and had started therapy.  I told her I would be taking a short leave from my business until Mikey is further a long and that I was certain that his progress would be great because he had started his therapy and was doing well.    When I read this email I was brought back to that moment in time when I truly believed that after a year of therapy my son would be speaking, and playing with his toys.   I remember my husband and I talking and saying that by the time Mikey was 5 he will be ready for a regular kindergarten and that we would have a HUGE celebration for his 5^th birthday and invite all his therapists, teachers and our friends and family and celebrate!   (Mikey will be 5 in three weeks.)

In that moment when I wrote that email, I had no idea what “Autism” had in store for us, the truth is I still don’t know much more today.  Three years have passed and Mikey is nowhere near where I thought he would be and the road to where he is now has been long and slow with lots of bumps along the way.   It’s hard not to second guess every decision we have made in his treatments and therapies and wonder if I could have done more or done things differently.  One thing I know for certain is that there is no one “magic,” therapy or treatment that is going to “fix,” my son.   It’s going to take time, patience, and persistence to help Mikey become the best Mikey he can be, and to help him to show us all he has inside.

Although I thought Mikey would be further along in his progress, I am still so proud of how far he has come.  Mikey is my hero, and the true warrior, as it is him who takes on this battle everyday trying to understand and cope with the world around him, and not being able to use his words to tell us how he feels, and the best part is, he does it with a smile. It’s hard to be angry or sad when Mikey is always smiling.   He is doing things at his own pace, you know what they say, slow and steady wins the race J. 

Since Mikey was diagnosed I have learned so much about myself, my husband and my son.  Mikey has taught me how to be a mother and most importantly how to be a mother to him.  I have learned to advocate for my son, how to follow my instincts. I’ve learned that I not only have to believe in my son, but I have to believe in myself.   I appreciate every moment and celebrate every accomplishment.    This life with Autism has taught me not to judge people as you don’t know what journey they are on.  Although this life is not an easy one, I still feel blessed, as I know there are parents in much worse of situations, who have lost young children to terminal diseases and would give anything to have their child back.  Mikey is here with me every day, so I can love him and he may not be able to speak or understand things, but he can walk, run, dance, laugh, love and feel, and for that I am blessed.

I am reminded today of all the unanswered questions about Autism, and about Mikey.  We are still very much at the beginning of our journey.  I still pray every night for answers and most importantly to hear Mikey’s voice.  Today is and will always be a sad day in my heart, but it also serves as a reminder that I need to keep moving forward.   However long it takes, however much it costs, I will NEVER stop and I will NEVER give up hope and I will ALWAYS believe in my son!  I know one day we still will be having that big celebration, it may not be this year, but it will happen and it will be the best day ever!

Here is a picture of Mikey a couple of weeks before he was diagnosed (Mommy was taking pictures for his birthday invite :)  )

Here is a picture of Mikey now, getting ready for another birthday, and Still Smiling....

My Zumba Addiction

I am going to start this post by saying, I never liked working out, never liked sweating and never stuck with an exercise regime for more than a month (and that was before my wedding so not sure if it counts!)

A few months ago I was complaining to my husband (yet again,) that I feel like I am always tired and have no energy and feel out of shape.  My husband said for probably the 1000^th time that I should really start doing some exercise that it would be good for my mind and my body (I have never listened to him because he loves working out, blah!).   This time since I was so desperate to feel better I figured I would give it a try and since I love to dance, I decided to give the new Zumba craze a try. 

I started with one class at a small place since I didn’t want to invest in a gym membership with my history of one week and done.   The place was very small and in the class was only my Mom, me and two other people.  I thought it would be easy, hey I am Puerto Rican and I can dance! lol.  Boy was I wrong! I never felt so awkward and out of beat in my life.  There were a few times during the class when I had to hold back my laughter when I caught a glimpse of myself in the mirror.  I felt silly but I didn’t care, it was fun and for that hour I didn’t think of anything except trying to keep up with the instructor.  I enjoyed the music and the sweat, I felt like I was in a club in the middle of the day.  I decided that this is something I would be willing to give a real try.  I joined a gym close to my sons school that offered Zumba classes daily.  I went to my second class and I was hooked.

Rewind to April of 2009 after my son was first diagnosed and I was sitting in the waiting room of a  DAN’s office.  I was in my sweats, no makeup, anxious and nervous.  A mother walks in with her son who was about 5 or 6 years old.  She is all done up, heels on and well put together.  She had definitely been there many times  and knew all of the receptionist.  She begins chatting away with the receptionists and her son keeps asking her for a snack which she keeps denying him since there is no eating in the office.  You can see the son wants to get her attention and it becomes clear to me that he too is on the autism spectrum; however she continues to talk to the receptionist.  The receptionist compliments her on her hair color and she tells them how she loves to change it up and is always getting a different color or cut.  She is telling them about being out at a bar the other night and how much fun she had and how she fell in her new heels while she was there.  As I listened and watched her go on so matter of factly I was completely taken back.  I thought to myself, "is this mother crazy?"  How does she care about her hair or her shoes or going out, her son is sick!  I could barely bring myself to do my hair and here she is talking about going out having fun and her shoes!  At this point I could not imagine going anywhere without my son and how would I be able to have any sort of fun knowing the fight my poor boy has ahead of him.  The Dr. came out and called me into the office and by then I was already on the verge of tears and was so thankful to get out of that waiting room and away from that mother.

The reason I share this story with you, is because at that moment, I never thought I would be here in this one.  I never thought I would want to or be able to do something for myself again, something to make me feel good, because to me at the time I thought that mother was so selfish to be thinking of her own fun.  After many tears and much time has passed I come to realize that coloring her hair and buying her shoes was her Zumba, her thing she did for herself, her thing that made her feel good.  Today I feel guilty having ever judged this mother as now I know we all need to have something for ourselves, an outlet to forget about the stress and worry of everyday. 

Although I happily revolve my life around my family and helping my son get better, when I am in my Zumba class I have an hour to myself,  an hour of not thinking, an hour of not worrying, an hour of letting things go.  There has been many a class that while listening to the music and doing the steps I have an overwhelming feeling to cry.  On occasion I almost have, but I fight off the tears and keep on the steps and in the end I feel so much better.  I don’t know exactly why this happens to me, and I am no psychologist, but maybe it has something to do with being there not thinking and just feeling, my emotions from the day or week come out.   The best part is I work through it, I jump higher dance faster and in the end I feel better and that need to cry is gone and replaced with calmness.  I leave feeling lighter, happier and I know this only makes me a better wife, and a better mother.

So my message to all of my Autism Mommies out there, find something to do that is just for you and don’t feel guilty about it!  Making time for yourself, even if it’s only a half hour a week, in the end it will only make you a better Mommy.  To the Mothers of the newly diagnosed, I know right now you can’t imagine making time for yourself, or having the energy or the drive to do anything, but trust me you will get there and things will get better.

I would like to give a special THANK YOU, to the Zumba instructors that have helped me find an outlet for myself, Claire from Synergy in Syosset, and Sue and Michelle formerly of Sportime in Syossett.  Thank you from the bottom of my heart!  You have no idea what going to your class has done for me, it has provided me with an outlet to recharge and to be a better Mommy.

Hope and Excitement in the "New"

Being the parent of a child with Autism means you have to do whatever you can to try to solve your child’s “puzzle.”  Each child is so different and there is no one identical treatment for all, so you have to be willing to try new therapies, new treatments, and unfortunately go through some disappointments, until you find the formula that works for your child.  The one that will make your child be the best they can be, and meet their fullest potential. 

Since our family is only 2 years into our journey with Autism, although we have tried quite a few treatments and therapies, we still have much to try and learn.  I know there is still a lot more in my little man that he is not showing us! 

I have read lots of stories about children with ASDs whose parents have tried a new treatment that helped them turn a corner and had a dramatic affect on them.  I recently spoke to a mother at my son’s school who stopped giving her child casein and immediately was amazed to hear him speaking more. I’ve read of diets and supplements that have helped children focus, and not stim as much.  Some parents have been blown away by how well their child has responded to Applied Behavioral Analysis Therapy and how quickly they have gained skills and make improvements.  I’ve read countless stories of parents amazed by the dramatic affect a diet or supplement or treatment has had on their child.   I still wait eagerly for this jaw dropping experience that something new will make a dramatic change for my son. 

I remember when Mikey was first diagnosed with Autism, and being told about ABA and how much this therapy will help my son, that in a year I was going to see such a dramatic change in him.  I was so hopeful and excited for that year to pass, so I can see all the progress Mikey would make. Unfortunately, the year passed all too quickly and I was left heartbroken and disappointed that Mikey’s’ progress was not as dramatic as I thought it would be.   When we started the gluten free casein free diet 2 weeks after Mikey was diagnosed, I watched every move he made carefully, and listened to ever sound, hoping for some words, hoping for a difference, but again was left disappointed.  I can go through the list of things from a new dog, to NAET, to the hopes of what school would do for him, but in the end they all left me with the same feeling, the disappointment and knot in my stomach, that, “ok, this didn’t work like I hoped, now what?”

Mikey has made slow and steady progress along the last two years, although I am happy he is moving forward I yearn so desperately for a burst of progress, something dramatic, something that will make me cry and shake with joy.  So we move on with hope to the next thing on our list to try, the “new.”

We are currently experiencing hope in the new as Mikey has some changes going on right now.  Last week we started giving Mikey Methyl B12 shots.  Methyl B12 is a supplement that has had a dramatic affect on some children with ASDs and has been known to increase language and focus during learning times.   I am keeping my fingers crossed and heart open, and praying for some big results.  Although, I probably tread a little more cautiously these days.

Another very big change that will happen after spring break, Mikey will be starting in a new classroom with a new teacher, one that is a better match for his needs.   Although I am nervous about how Mikey will react to his new surroundings, I am so excited for this change.  It is so very important that children like Mikey have a teacher that knows how to teach them, the way that they learn.  Let’s face it, with all the changes in diet and supplements that might allow these children to be more focused and aware, it means nothing if they don’t have the right person teaching them!  I am hopeful that this teacher will make an impact and difference in Mikey’s life.  I wonder if she knows how much I am counting on her to help our son?  If she realizes how I prayed every night that my son would get into her class because of her great reputation?  This is a new chance for Mikey, an opportunity to meet a teacher that might be the one that, “gets him,” and can reach him, to help him learn and grow.  I am most excited about this change, this fresh new start, and I only hope that this time next year, I really will see a huge difference, and will be amazed.

When it comes down to it, if these new things we are trying aren’t what produce the best results for Mikey, yes, I will be disappointed, but I will NEVER GIVE UP!  We will keep on going, moving on to the next thing until we find the right formula for Mikey.

Unfortunately, this is the life of most parents of children with ASD’s, we are desperately trying to help our children.  We are on a roller coaster ride of triumph’s and defeats, a ride that we didn’t buy a ticket to!  Most of the time, we have to do it at our own expense since insurance companies do not cover much of the treatments and therapies. Doctors expect us parents to accept the answer, “there is no cure.”  But that is something no parent should ever accept!  We pray for more and better research to find a cure or to find a way to help our children live a normal life, where they can be independent and have a job, a family, and be happy.  It’s sad that approximately 1 million people are diagnosed with an Autism Spectrum Disorder in the United States, and there is still not enough research, still not enough funding or support, and still no answers…