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)