2017-04-02 / Insight

Autism doesn’t wear a sign, nor should any person have to

REGINA STARR REGINA STARR Editor’s note: The following column was written by Regina Starr, director of Forever Friends Network which is an autism advocacy organization. A pril is Autism Awareness

Month — the time as a parent, caregiver, sibling or family member when we try to bring as much awareness about autism as we can in 30 days.

But for us as parents autism awareness is constant in our home and daily lives. For us and our loved one it’s our normal. We know no different. At times autism can be very lonely, sheltered, isolated and not accepted for not only the loved one but as a parent. We lose friends, normalcy, freedom, health and sometimes we just survive.

However my experience with autism and my son Brandon, who is going to be 19 in June, has taught me to be a better person. He has taught me to strive to achieve the unachievable. I say, “If Brandon can do it, so can I.” I find myself to be more forgiving, tolerant and I want to reach out and help as many people as possible.

As a mother, I want my son to live in a world where he is accepted. Brandon attends Lapeer County Intermediate School District. He is so lucky to be among staff that truly has his best interest and future at heart.

There are times when in public people are quick to judge. We get rude comments, stares, heckling and comments on our parenting skills. My son has had the police called on him several times whether it be for pacing or getting upset, talking to himself or trying to regulate his behavior. He is trying to just navigate in a world that at times can be so overwhelming. People are unaware that someone as normal looking as you and I might have autism. Autism doesn’t wear a sign, nor should a person have to.

You might hear the word “Autism Spectrum” when referring to someone with autism. It just simply means that people with autism don’t all act the same. There are similar traits. Some may be nonverbal, make no eye contact, have sensory issues, might not want to be touched or talked to, might run away, fight nor flight. Some may go to college, some may never. Most people on the Autism Spectrum find it most difficult in a social setting. Not knowing how to make friends, have a relationship or go to concerts, movies, play at recess with their friends is common.

I take my son everywhere with me. I want him to be recognized and known in the community. He frequents the local Starbucks every day after school to get his Starbucks water. He is greeted with kindness and acceptance. Local restaurants, grocery stores all know who he is and know him by name. Sometimes people with autism are targeted and can be taken advantage of. It’s unfortunate, but true. I have made my life to revolve around Brandon and his happiness. My life took a different turn as his parent when he was diagnosed at the age of 4. I educated myself and became his advocate and his voice. I have given up dreams and jobs to make sure that my son has every chance possible to become the adult he needs to be. We have to live paycheck to paycheck to insure our child gets what they need.

As parents a simple trip to the store, doctors office or a quick lunch with a friend can be weeks in the planning. Or for that matter, not even possible depending on the support that they have. We all go through this life and take things for granted, but when we see that mother or father in the store struggling say to yourself instead of judging “Is there something that I could do to help?” It’s so easy to turn a blind eye and just ignore. Maybe they won’t want your help, but sometimes in this hectic life it might mean the world to them.

Now autism has great things too. My son celebrates milestones in a different way. He can make his own mac and cheese. He’s starting to make friends. He’s starting to become independent which is my goal. He loves Post It notes and he is never without them. He loves his music. He is your typical teen when it comes to music. He has a memory that is like no other. He has a savant quality if you will. He asks everyone their birthday and guaranteed he will never forget.

We as autism parents celebrate the little things in life. Our children were able to brush their teeth or get their driver’s license, able to tie their shoe and they’re able to say “I love you.” Or else they made it 10 minutes in the grocery store without a meltdown. Or they were able to order their own food off a menu. It’s the little things that to most seem so trivial, but to us are huge.

That’s why I created Forever Friends Network, an autism social group. This is a way for parents and families to feel love and acceptance and create lasting friendships.

One of the biggest worries as a parent is who will take care of my son when I’m gone? It’s something that is constant in my daily life. Brandon has no siblings and limited family members. So that’s why I have made it my mission to get him to the point he needs to be so.

When I am gone he will live his life to the best of his ability. If he can live his life the way he chooses no matter what it is and have some type of quality of life I will be happy.

People need to remember that those with Autism Spectrum are employable. It’s just finding the right fit for them with the right support.

My life has true meaning and I truly believe that God gave me the most amazing son. He has autism. He is the reason I am who I am. If not for Brandon I wouldn’t be the mother that I am. I love each day trying to improve his life and those families around me affected by autism.

I encourage everyone to come to an autism social just once. Experience the acceptance and support that these families feel. Know that they too just want to be like you. They just do things differently and process things in a different way.

Forever Friends Network is a nonprofit 501(3)c organization. We consist of four board members. We are trying to open an autism resource center and need funding. We ask for the public’s help in funding this project.

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