amaliastarr's Autisable

Doing the Right Thing

Sat, 31 Dec 2011 00:22:28 GMT

I'd like to start off the new year with an upbeat story.

This is one of my favorite stories that I often share when I go out to speak. I find others love it as much as I do. I believe this story helps to depict our children with autism in a very positive light. These are the type of stories that help to show the world some of the special traits our children with autism have.

Several years ago my son, Brandon was working in a retail store. One day as he was working he saw something crumpled up on the ground and he went over to pick it up. He began to unravel it and saw it was a hundred dollar bill.

Without hesitation, he quickly marched into his manger’s office. He said, "I found a hundred dollar bill and someone lost it.”

Later that day one of his co-workers said, “Brandon, I saw your manager put the hundred dollar bill in his wallet. Brandon said, “I don’t care, I did the right thing.”

I love Brandon’s honesty and that he does what he feels is right. He continues to be my finest teacher.

What would you have done if you found that $100 bill?

My Christmas and Hanukkah Wish for You

Wed, 21 Dec 2011 20:55:10 GMT

For Christmas and Hanukkah I wish I could tell all parents who have children with autism and special needs that everything is going to be okay. I wish we could come together and I could give you all a big hug.

I feel extremely privileged and honored to have the opportunity to travel and share my story and to write for online sites like Autisable where we can read and hear about others in the autism arena.

We did not have the Internet when my son was born back in 1973. We were all isolated from one another. At least now albeit a bit confusing we have choices and suggestions coming in from everywhere on how to help our special needs children. All that is great, but we must be very careful how we choose and not to run ourselves ragged. We must listen quietly to our inner wisdom and intuition that we all have inside of us.

Below are 16 important lessons I learned while raising my son, Brandon.

It’s not your fault.
This is a process.
Live in the moment.
Don’t allow fear to run your life.
Be positive as often as you can.
Give your child praise.
Be ready to learn and change.
Open new doors and walk through them.
Being different can be beautiful.
Share your feelings.
Take care of yourself first.
Reach out for assistance, help and support.
Choose your battles wisely.
Trust yourself.
Hold onto HOPE.
Acceptance is the answer.

This has not been an easy road nor a road I would have chosen, but that is not how life works.  It is not what we are given, it is how we handle it.

After thirty-eight years, I have to admit that having Brandon for a son is one of the best things that has ever happened to me. Although he is still unable to say I love you and he shows little emotion and appreciation he has given me the greatest opportunity to grow, change and the gift to be of service. He has made my life on the planet a great mission to help others in the autism arena.

Thanks to Brandon I truly love what I do and when the holidays come around it allows me to reflect on the past thirty-eight years with gratitude.

I will leave you with one of my favorite quotes that I found to be so true.

It is one of the most beautiful compensations in life…that no man can sincerely try to help another without helping himself.

--Ralph Waldo Emerson

Wishing you all a Merry Christmas and a Happy Hanukkah.

How I Helped My Son Achieve Independence

Tue, 06 Dec 2011 16:49:59 GMT

This is how independence began for my son, Brandon almost fourteen years ago.

I found Brandon a small bachelor apartment in a safe neighborhood. At first, we rode the busses together for several weeks until he could find his way. We walked around his new neighborhood until he felt comfortable enough to do it on his own. He had a job coach at his new job to help him with any difficulties he might face.

I am extremely happy for my son’s success, but I wish more adults with autism could reach their maximum independence. When I go out to speak I find that most parents are stuck in fear. Most of them are unable to allow their children to advance to the next level, because it scares them to death. I understand, as it was extremely difficult for me to let my son go and grow, but I had to let him try.

Brandon’s life is certainly far from perfect and he has many hurdles to get over each and everyday, but he does get over them. He likes living alone, because when he lived with other people he was treated very badly.

Once Brandon’s seizures are under control he will return to work. In the meantime, he has created his own job, which is helping people who sell items from their carts on the mall. He assists them by watching their carts when they take breaks and he gets them food when needed. He likes doing it.

Although his life is very different than I ever expected I accept my son for who he is and my rules for him are simple. If he is not hurting anyone, and he is not getting hurt, or he is not ill, I stay out of his personal business. He is thirty-eight years old and we talk over the phone often almost every day and when he needs me he reaches out. I see him every other week. We get his chores done that he cannot do on foot and we have a meal together. It is beautiful to watch my son continue to grow and develop.

I do what I can to help Brandon, but I am also very careful to not step on his toes. It is like a dance. I have learned when to step in and when to step out. This way, it encourages him to grow and do things for himself. I have found that having firsthand experience is one of the best ways to learn.

I have a new non-profit called, Autism Independence Project. I am in the fund-raising stage to film a documentary about Brandon showing how he has made his life work for him. I feel it is extremely important that parents see an adult who has many limitations and is still able to make it out in the “real world”. I believe it will give them the courage they need to allow their child to go and grow. To learn more about the project giving an insightful peek inside Brandon’s life and the Secret World documentary, visit http://www.autismindependenceproject.org.

Judging Hurts

Wed, 26 Oct 2011 22:18:43 GMT

I have often been judged while raising my son, Brandon. People pointed and stared at us yelling rude comments screaming out, “You’re a terrible mother. Can’t you control your child? Your child is a spoiled brat, he’s a rude jerk.” Those were just a few of the comments I heard while Brandon was growing up. If they only knew what I had to deal with everyday in order to get my special needs son and myself ready and out of the house. Maybe then they would not be so quick to judge us.

I began to think about what makes a person a judger? I believe a person judges others because they think they know it all and their way is right and the only way. They are not willing to be flexible or take the time to see another person’s perspective. They are stuck in their own beliefs and appear to be extremely rigid.

I have to admit I used to judge people too. That was thirty-eight years ago before Brandon was born. My life was easy, carefree and I was young and thought I had it all. I even thought I knew it all. After raising Brandon I know for sure I do not know it all and I never will and I no longer judge anyone anymore.

I have worked hard with Brandon over the years to help him understand the best way to deal with people who judge. Today, Brandon and I still have those who judge around us, but now we know how to handle them better. Although we do not like what they say or how they act or how they treat us we no longer react. We quickly remove ourselves from these situations whenever possible.

I am afraid that there will always be people who judge, those who do things differently. Being on the autism trail for over thirty-eight years I am sure you can imagine what we have heard. Today, Brandon and I have become strong. We are able to let the comments roll off our backs and we leave the negativity where it belongs, with those who judge.

Seizures Can Rip Your LIfe Apart

Mon, 17 Oct 2011 20:08:30 GMT

The unwritten oath of a mother is to protect her child and after thirty-nine years, I still cannot do that in the seizure department. That is a hard pill for me to swallow. As I write this, I am searching for a new neurologist.

Did you know that 25% of children who have autism also have epilepsy, and 25% of people who have epilepsy are unable to control their seizures with medication?

My son, Brandon has had seizures since he was nine years old. Today, he is thirty-eight and he still continues to experience them. He has been on numerous medications and we are running out of options. Two months ago, he was put on a fairly new medication for adults who have generalized epilepsy. His neurologist said he has had great results with this newer drug called “Vimpat.” Unfortunately, Brandon is still experiencing seizures and having more than usual. Brandon feels both disappointed and depressed.

The other day he called to tell me he had another seizure and was taken to the hospital again for the third time in a week. He said, “I hate my life, I hate my life, why me?” After almost thirty years of trying to stop his seizures I could understand how he felt. Thank God the next day he woke up feeling better and was ready to start anew. He never carries his old baggage from one day into the next.

He continues to be my finest teacher.

Positive Input is like a Ray of Sunshine

Thu, 15 Sep 2011 00:09:00 GMT

Do you know how powerfully destructive negative input can be? It can tear one apart and make a person doubt them self in all areas of their life. It can stop one from advancing and wanting to do better. It can cause depression.

We all want to feel acknowledged and appreciated for who we are.

Having a positive attitude is a powerful tool and tonic. I know how very important it is for our children, especially our children with autism and special needs. When I give my autistic adult son positive feedback, compliments, or praise, his entire demeanor changes instantly and dramatically. I can see with my very own eyes how it brightens him up. It is like a ray of sunshine lit up his world and he soaks it up like a sponge.

The more positive input I give my son the more he grows and develops. It is as if I am giving him permission to be himself and to do his best and that I am happy he exists. In other words, I accept him for exactly who he is and he feels it. If you want to see how your child will respond from positive input just give it a try. With positive reinforcement our children will thrive.

Almost a Restaurant Fiasco

Tue, 16 Aug 2011 22:24:13 GMT

Last week, I was out having lunch with my thirty-eight year old son, Brandon. We were at a self-serve restaurant inside a market. We split up and I went to get the food and Brandon went to get the napkins and silverware. When I came back, I saw Brandon standing in front of the silverware dispenser. He kept pressing the red arrow that pointed to the handle that one would push to get out a utensil. As I walked towards him I saw him try to pull off the top of the machine and when he could not get the top off he moved to the machine right next to it and tried to pull the top off that one too. I ran quickly as I could see he was getting anxious. He just wanted to get his utensils like everyone else and was unable to accomplish that task. I saw a cashier run over towards him and she began to yell, “What do you think you are doing?” I knew from a distance it did appear that he was deliberately trying to break these dispenser machines and could cause a health hazard, but of course that was not the case. I explained to the cashier what was happening and I showed Brandon how to use the machine. It took him a moment, because he was still focused and stuck on the arrow. I showed him once again and he got it. He appeared relieved.

I told him that happens to me too. I said sometimes when I am out traveling on business and I go to a new airport, especially if I am tired I too have trouble with vending machines and how to use them. I could see once I shared my story in a kind tone he was then able to let go of his frustration. When he understood I had issues with vending machines he then knew he was not the only one.

My son, Brandon lives alone and has done so for the past fourteen years. He has had to learn a lot on his own to be able to stay out there in the “real world”. But what I love most about my son is that he continues to learn and move on and he does not live in the past. He has no baggage from yesterday. He begins each day anew. Yes, my autistic son continues to teach me and my job is to be ready for the lesson.

Keeping Your Child Safe

Tue, 26 Jul 2011 22:21:25 GMT

Whenever I read or hear of a tragic incident that has happened to a child or adult who has autism and special needs, it truly breaks my heart. I feel we are all connected as one big family. When something good happens to a child or adult who has autism, I celebrate. I do not need to know the individual personally. I know that positive stories can bring hope to the autism community. Hope is a much-needed ingredient when we are raising special needs children.

Independence is one of the greatest gifts we can give our children.

My autistic son, Brandon, is thirty-eight years old. He loves his independence although he has experienced many negative incidents over the past fourteen years while living on his own. Unfortunately, most people who have autism are easy prey. They are usually naive and trusting and people know who they can take advantage of. In the world today we have to be more careful than ever with all of our children, but especially our children who have autism and special needs.

I understand firsthand, even though my son is a grown man, at age thirty-eight he still continues to be bullied and taken advantage of by other adults, which truly shocks me. One would hope that people would grow out of this immature, obnoxious behavior. However, as you know if we live out in the “real” world things happen and none of us are guaranteed a safety net.

I often spend time on helping Brandon to recognize that he has choices and options and I share stories about staying safe. I find with my son that if I don’t lecture him, but engage him by telling short stories as examples he is able to digest and understand them much better. I use positive reinforcement rather than scare tactics.

Just last week, Brandon sold his newly purchased cell phone to a so called, “friend”. The “friend” told him that he would pay him $200 later (much less than Brandon had originally paid) and he would add him to his plan for only $20 a month. Brandon believed and trusted this man until he found out that the man left town in a hurry and disconnected his cell phone. Brandon had no way to get in touch with him to collect his $200. In addition, Brandon had to pay extra money and work very hard to try to recapture his old phone number and open a new account.

That was when Brandon finally realized and sadly admitted the man was not really his friend. Yes, my son lost $200, but I believe he learned an invaluable lesson. However, only time will tell. Something similar to this happened to Brandon but that was more than ten years ago. So I do believe he is able to learn these lessons.

“How will our children ever learn if they don’t have the opportunity to experience and live life?”

Of course I am not happy that Brandon lost $200, and who would be? However, I am grateful that he was not physically harmed. I feel I need to bring up this important point… while Brandon was growing up we moved him in and out of different schools both private and public and he was often beaten up badly. This happened even when there was supervision. You don’t have to live independently to have negative things happen to you.

Today more than ever it has become a necessity for us to learn and understand how to keep our special needs children safe.

I have been asked to teach a workshop on safety for parents who have children with special needs. I believe we can make a difference by educating the parents not to live in fear so they are more willing to allow their children to experience life. To find that happy middle ground where their children can grow into their full potential and be as safe as possible while they develop and find their way.

My motto when it comes to safety is: Be courageous, trust, continue to educate yourself and your children, and think positive.

What I Discovered Along the Autism Trail

Thu, 14 Jul 2011 23:54:48 GMT

It is hard to believe that my son, Brandon, recently celebrated his thirty-eighth birthday. We have been through a lot together. There were many times I felt like giving up and felt beaten down, but my love for my son kept me going. Brandon has taught me so much and these are just a few of the wonderful lessons and tools I learned while raising Brandon:

Parents set an example by their actions, not their words.
Let’s not allow our fears to become our children’s fears.
Remember to pause, breathe, and regroup throughout the day.
It is important to learn about and celebrate a person’s differences.
We all have choices and options - choose them wisely.
Taking care of yourself first gives you the strength to carry on.
Encouraging words help to build self-esteem.
Live in the moment rather than in the future – it’s called the “what if” zone.
Being kind will open more doors for you and your children.
You don’t have to listen to negativity — trust yourself, trust your instincts.
Be willing to be flexible and to change your ways.
Replace worry with wonder and see life from a more positive perspective.
When you allow yourself to surrender, acceptance follows.
Love and support help to build a strong foundation in any home.

I cannot thank my son enough for silently demanding that I grow and change every step of the way. He helped me to see life though his eyes and taught me to believe in myself and to be more creative, kind, and courageous. Yes, it took time to see the good and to be able to switch from feeling negative to being positive. However, when I surrendered and was able to accept my son just as he was, I became a more compassionate, and loving mother.

As parents, we hold the key to our children’s future.

Everyday is Independence Day

Thu, 30 Jun 2011 23:37:37 GMT

Photo Courtesy: AspieWeb

Independence Day is just around the corner and it became one of my favorite holidays fourteen years ago when Brandon became independent and free. At that time, I too found independence and freedom as well.

We never know when we raise children with special needs, or any child for that matter, what the outcome will look like. Especially after talking with the professionals who worked with Brandon, they all agreed that living alone would be nearly impossible. As you can see they were all wrong.

I actually celebrate the 4^th of July everyday. Freedom is one of the greatest gifts we can give our children and ourselves. Although living alone may not be an option for your child helping your son or daughter reach his or her full potential and live the best life possible, it is every parent’s dream.

“Start early and think positive,” is my motto, but if you missed that early opportunity like I did with Brandon it is important you know that it is never too late to help your child succeed.

On this 4^th of July, I hope you will think about the next action or step you can take to help your child move closer towards independence. A huge step for me was not to do things for Brandon even if it seemed nearly impossible for him to achieve. If we do not allow our children to have these experiences, how will they ever learn?

Help your children by encouraging them and giving them the time to accomplish these smaller tasks. It is sure to improve their self-esteem. Every small step added together becomes grand, moving your child one step closer to independence.

Happy 4^th of July!

Amalia