Autism, A Family Affair

As we come to the end of Autism Awareness Month, much is the same as where we started the month, with no answers or magic cure on the horizon.  So we must forge ahead and continue to help each other through this quest for answers, help and support.  I would like to offer some ideas on what you can do to make a difference in the life of a family with Autism.  As you can imagine this list could get pretty long, but in this post I am going to focus on family. 

I understand that when someone in your family has a child diagnosed with Autism, it could be overwhelming and confusing.  As a family member, you don’t know what to do, what to ask, how involved to get, you may have your own family to care for, but there are small things you can do that can make a big difference and impact on your family members life who is dealing with Autism every day. 

 

1. Do not ignore the topic and pretend life is normal, Don’t be afraid to ask questions: I know it’s a touchy subject, and I am sure you think your family member is tired of talking about Autism, but I can promise you what they really need is to know that they are not alone.  What we all want is to know that we have the support of our family and close friends.  Don’t be afraid to ask about treatments, therapies and progress.  Knowing that your family members care enough to ask questions and express their feelings, makes you feel like you have people by your side.  

  

2. Do #1 without judgment, do not judge their decisions instead show support: Let’s face it, any parent of any child, typical or not, questions their decisions.  These little bundles of love do not come with a manual.  When you have a child with special needs this feeling is magnified.  There will be many times as a family member that you don’t fully understand, the diet, the supplements, the protocols, the behavior plans, but TRUST that the parent researched everything that went into that decision and that it was made in their child’s best interest.  Do not make judgmental or unsupportive comments about what you did not spend weeks/months researching.  Instead, if you don’t understand their decision revert to #1 and ask questions, I am sure the parents of the child have a reason for what they are doing, if not pages of research. 

  

3. Take the time to get to know them:  Take the time to interact and know the child.  As a mom I can tell you this is #1 for me, it makes me so happy to see someone go out of their way to interact with Mikey, especially when it’s a family member.  Mikey is so much more than his diagnosis, and when someone gets past the fear of the unknown and treats him like a child, and interacts, and tries, and asks me how to interact, it literally brings me tears of joy. I can promise you if you take the time to know the child beyond the diagnosis, you will be blessed with more love and understanding than you ever thought possible. 

 

4. Offer a timeout:  If you have a family member who has a child with Autism, I am sure you have been to a function where you see them chasing after their child all day, or confined to one room, or taking turns with their husband/wife keeping an eye on their loved one.  Having a child with special needs can feel isolating, especially at family functions, where although you are physically there, you are by no means part of the party or fun.  I can promise you if you take as little as 15 minutes of your night and offer to keep an eye on their child so that your family members can have dinner together, or if it’s a single parent, to have dinner sitting down with a little adult conversation and a moment to feel included, will make a huge difference.  This will change their experience at family functions for the better, the more you include and help the more you will see them coming to your affairs knowing they have your support and love.  

  

5. Teach your children understanding and acceptance: It brings me so much joy to see Mikeys cousins making an effort to interact with him.  The more you talk to your children about acceptance and autism and encourage them to ask questions, the less intimidated they will be to interact.  You can even give them a few ideas to help them interact with your loved one on the spectrum, I promise what they receive in return will be an invaluable lesson in patience, kindness and love. 

 

1. Provide Respite: Ok, so I will admit, I had no idea what this word meant until I had Mikey, and I am sure there are some of you who do not know what it is.  So here is the Webster definition:  Respite: Noun:  A Short period of time when you are able to stop doing something that is difficult or unpleasant or when something difficult or unpleasant is delayed. A period of temporary delay, an interval of rest or relief.  Verb:  to grant a temporary period of relief: to grant a respite to; put off, delay. Adjective:  providing or being temporary care in relief of a primary caregiver.   So this is a tough one, and not everyone is going to feel comfortable, confident or equipped to offer this help, however if you do have an understanding and a relationship with the child, the smallest amount of time you can offer Mom, Dad or both, a much needed break will be so appreciated.  Having a child with Autism or any special need is 24/7 for more than the standard 18 years and off to college, and when it comes to a child like Mikey who may require lifelong support, any respite I receive is a time to regroup and recharge so that I do not burn out.  If you aren’t confident enough to be alone with the child, offering to visit your family member so that they can have some adult conversation in an environment that their child is comfortable and requires less support, might be a welcomed change in their routine.    

Just as every child on the spectrum is different and unique, so are their families and parents.  The bottom line is as parents of a child with Autism you want to feel the love and support of your family, you want to feel included, so any step you can take to make them feel that way will make a difference in their lives <3 

Happy 8th Birthday Mikey!

Eight year ago today I gave birth to the love of my life.  I don’t think there is an adequate word to describe the love a mother has for her child.  It is beyond measure, beyond words. I don’t think the word LOVE is really enough to cover it. 

Mikey, since the day he was born, is my greatest love, joy and happiness, along with my greatest fears, doubts and guilt, all wrapped in this beautiful perfect little soul. 

His birthday is always a bittersweet day for me.  When I think back to the day he was born, the best day of my life, I remember all of the hopes and dreams I had.  It was a perfect time, when nothing was impossible, and my dreams for my son were limitless. 

When Autism came into our life, everything changed, however the one thing that remained the same is my love for my child, that love has only become stronger, with more purpose. 

There is not a day that goes by that I don’t thank God for blessing me with Mikey. There is not one day that goes by that I don’t look at him with utter amazement, that this little person encompasses all of my love.  He makes me smile and laugh every day, and reminds me to not take the little things for granted, and to celebrate every accomplishment, even the small ones.   

There are days though that I can’t help but wonder what Mikey would be like if he didn’t have autism.  His personality and love shine through his Autism, but I can’t help but wonder what he would have to say, what he would like to do, what his dreams and hopes would be for his future if Autism hadn’t come and run havoc on his life.

If you know Mikey, if you have the pleasure to really, really, get to know him, you know that it is impossible to be sad around him.   Mikey is nothing but smiles and love.  He knows no sadness, he knows no prejudice, and he loves unconditionally because he knows no other way.  Mikey is not corrupted by society, he does not pass judgments, he enjoys every moment he is in.  He has taught me the TRUE meaning of unconditional love.

BUT as a mom of a child with special needs, there is this undeniable guilt that lingers.  For me this is ALWAYS a place I avoid going, but on his Birthday I am always brought there.  I never want to go there because I never want to feel any negative emotions around Mikey, I never want him to feel he is unwanted, and I never want anyone else to think I would wish he was a different child.  But there is always that guilt… could I have done something to avoid this?

There is so much controversy going on right now about vaccines, and this post is definitely not one that I want to address that with, (so please do not comment about vaccines in this post).  But I can’t help think about the flu vaccine I had when I was pregnant because the doctor told me I may lose my unborn child if I got the flu (even though I never had the flu or vaccine before).  I was on medication for pre-term contractions, (that I did not feel), without getting a second opinion.  As a result I had sonograms every week for at least 2 months, all of this at the advice of my doctor, thinking I was doing what was best for my unborn child.  I think about everything I ate, everything I put on my body.   I have always hated conflict, but for my son I would fight an army,  there is added guilt because I didn’t ask the questions of my doctors that I wanted to ask,  I didn’t want to go, “against the grain.” 

Today as Mikey turns a year older, I am reminded of all the unknowns, and questions for the future.   I am reminded how there is no real “plan,” of where he will be, or who will be with him.  Mikey is an only child so that’s it, when his father and I are gone, there is no one else left in his immediate family, and that breaks my heart. 

When Mikey was first diagnosed after the initial shock set in, I was so hopeful, I was so positive about the future, and I didn’t put limits on what he could accomplish.  As the years passed, my expectations slowly became less, I set into reality and I gave into the expectations that society put on him, and for that I apologize to you my son.  I apologize to you Mikey for any moment I gave up, for any moment I expected less than the best from you.   You have always shown me that you are capable of more than I could ever imagine.

These last 8 years of my life have been a whirlwind.  I have had a failed marriage, I have questioned my decisions as a wife, a mother and as a woman, but what has been unwavering is the bond Mikey and I share.  He is without a doubt my greatest love and my greatest teacher. 

I have been far away from the Butterfly Mission because I have been busy trying to find my place, and be a mother, but the reason I started the Butterfly Mission was to honor my son, and that purpose still stands.  So today I re- affirm my commitment to The Butterfly Mission.  Today I commit to continue to honor my son and make a difference in his name and I thank all who have stood by my side along the way.

 

Happy Birthday to my sweet Mikey I love you and I am so proud to be your Mommy.

 

If you would like to contribute and volunteer your time to the Butterfly Mission please contact me at thebutterflymiss@gmail.com.

                                                        (photo by Bettye Rainwater Photography)

    

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....