amaliastarr's Autisable

Are You Moving or Staying?

Wed, 09 May 2012 22:14:57 GMT

My son, Brandon, is thirty-nine years old and he has been living independently for the past fifteen years. He has hit many road bumps and obstacles along the way. But nothing had prepared either one of us for what was about to happen.

Brandon has been living in an apartment near the beach for the past seven years. He loves where he lives. Both Brandon and I had expected him to live there until the end of his life, but then the unexpected happened. The city decided to demolish a seven story parking structure, which is attached to Brandon’s apartment building and to rebuild an eleven story parking structure in its place. It will take approximately two years to be completed.

I am sure you can imagine the excruciating noise from the jackhammers and all the other equipment, especially if you have sensory issues. Brandon has autism and he has had epilepsy since he was nine years old, but finally after all these years we have found a new medication that has helped him tremendously with his seizures.

He was getting ready to see if he could work again with Best Buddies to find him a new job. However, with the shaking and the vibrations from the demolition of the building, he began to experience multiple seizures daily for the past several weeks. That is something he has never experienced before.

How was I going to help my son with both the noise and possibly having to move? I asked Brandon this question: “What do you dislike more, all the loud noises or moving into a new place to live? His answer was, “I hate them both.”

We are waiting until they process Brandon’s request to move and that may take four to six weeks. The way this company works is that they will show Brandon two new apartments and if he does not like either one he can stay where he lives now and apply again in a year.

Brandon just called me and said, “I don’t want to move,” but he changes his mind everyday. I know how extremely hard this must be for him and how difficult it has been for me to watch him go through this. I tried to explain to Brandon that this too is a process. I tried to explain to Brandon: “Some days you will want to move and other days you will want to stay. Why don’t we take a look at the two units and make a decision when we see them? That way you will be in charge and have choices.” He felt confused because he couldn’t make a decision and stick with it.

This is really tough and all I can do is to be here to support him while this demolition and rebuilding persists. His counselor from the regional center is looking into a volunteer job for Brandon. I am trying to find something for Brandon to do during the day as well when the noise is impossible for him to be in his apartment.

Just when you think you may have been through the toughest of times, things like this appear. This is called living life and being independent. If we want to live independently, then we will not be spared from the every day challenges that occur. What better way to learn life than through living it?

"Good Enough"

Thu, 29 Mar 2012 18:10:18 GMT

When do we see our children’s lives as being “Good Enough”? When do we stop pushing them? When are we okay with letting go of the outcome? When do we accept their lives as being different than we thought or wanted? When do we realize that we as parents are here to support, teach, guide and love our children for who they are and how they live?

These answers hit me like a ton of bricks just a few weeks ago when my son, Brandon celebrated his thirty-ninth birthday. Brandon has been making good progress over the years, but this year was very different. He was able to tell me he needed and wanted me to move back and give him more space. Well, that was the essence of the conversation although he did not say it so nicely. That is one of Brandon’s areas he has the most difficulty with, conquering how to ask for what he wants and say it in a kind manner.

Of course, I know he never means to be mean, but often what he says sounds rude or nasty. This time I got what he was saying loud and clear. It touched my heart. After all these years it is finally time to have even more space between us. That is beautiful and what we have been diligently working towards for the past thirty-nine years and it is finally here. But I want to be honest, when it happened I cried with joyful and elated tears while at the same time I was crying with tears of sadness from what appears to be a huge piece to the final separation.

Over the past several weeks, Brandon vacillated back and forth with his decision to become more independent, but I know that this too is a process. He takes two steps forward and one step backwards. However, at least we are now on the same page helping Brandon to have the space he needs to grow and develop even more.

I could not be happier to see my son want to be more on his own. I honor his decision, timing, and I support him with love. When I hung up the phone with Brandon the words “Good Enough” screamed out to me.

Finally, after all these years I am able to come to terms with my son’s life being “Good Enough”. A matter of fact, the term “Good Enough” I now use in all facets of my life. I am no longer seeking perfection, instead I know when something is “Good Enough” and I am able to move along quicker and be happier in my life and take more risks. I am no longer seeking the dreadful word of perfection. This has been a real eye opener and has released me from what holds most of us back from taking risks and really living our lives to the fullest. I am even more willing to play and be silly and treat life as a joyful journey not treating all that I do with the dreaded perfection, which seems to often also create fear.

I feel free and I see that is exactly what my son, Brandon wants. Freedom is what we all want and deserve. So, if you ever get stuck being a perfectionist remember to replace perfection with “Good Enough,” it is sure to change your outlook and release you from anxiety and bring you great pleasure.

Plans Set in Stone

Thu, 22 Mar 2012 22:25:15 GMT

If you were to make plans with my son, Brandon they would be set in stone. He cannot tolerate any kind of changes as it puts him into a depressed state. If you cannot show up for any reason or you are late he takes it personally and he feels sad. Changes have been one of the hardest things for my son to accept and adapt to.

Just the other day I had to make a change with Brandon. I was going with my son Matthew and his family to take Brandon out for dinner to celebrate his thirty-ninth birthday. But I did not feel well so I had to cancel. I seldom do that knowing how difficult it has been for Brandon in the past to change plans.

When I called Brandon and told him why I was unable to make it for dinner and that we were going to reschedule I was anticipating the worst, but that did not happen. Brandon said it was okay. I made sure he knew I wanted to be there and told him when and how we were going to reschedule our date to celebrate his birthday. I treated him with respect explaining it all to him and he seemed fine with the change.

That was the very first time I heard Brandon accept change with a positive attitude. That is huge for Brandon and for most people who have autism. Brandon continues to grow and change. A matter of fact, it seems that all the areas we have worked on over the past thirty-nine years are beginning to catch up with him.

As parents, when we see our children and adults continue to grow and change it refuels us and helps us to stay on the path and keeps us motivated in a positive manner. So for those who say, “ After a while you just have to give up because they won’t develop anymore”, I say they don’t understand the process. Our children with autism learn at their own time and pace, not ours. As parents, we do not give up. I believe that could be one of our finest traits.

The Dance of Independence

Thu, 16 Feb 2012 23:42:48 GMT

When I was an adult, my mother shared a story about me when I was four years old. I was the youngest of three girls and one day while my mom was swinging me in the park, I told her to stop pushing me. I said, “I can do it by myself.” My mother said she stopped pushing and when she backed away from the swing she began to cry. She said to herself, my baby is growing up and she does not need me anymore. She said it was one of the saddest days of her life.

I never understood how she felt until recently when my thirty-nine year old son, Brandon did something very similar. Keep in mind that Brandon has been living on his own for the past fifteen years.

When I called Brandon a couple of weeks ago he answered the phone and said, “What do you want?” in a rude tone of voice. After I answered him no matter what I said, his new response went something like this, “Yeah, yeah, yeah”, and he would repeat it. He has been doing that for over a week now.

At first, I felt offended and a wave of sadness rushed over me. Then I realized that Brandon was trying to tell me he needed more space. But instead, because he has great difficulty with words and expressing himself this was the best he could do.

Then it hit me like a ton of bricks. My son who I have spent almost forty years trying to teach him how to become more independent was now showing me that all these years spent were finally paying off. I have to give Brandon credit because it took a lot of courage for him to speak out even if he was unable to execute it in a kind way. I know that we all have to start somewhere.

Once again, I am asked to “let go” and this time even more so. The “letting go” process is never easy, but it is required of all of us if and when we want our children to become more independent.

Brandon was just trying to become more independent much like the story I shared with you about my mother pushing me on the swing at the beginning of this post. Yes, I was four then and Brandon is now thirty-nine and quite honestly it really does not matter how long it takes to become independent as long as our children are headed in the right direction growing and developing one step at a time.

I discovered that independence is like a dance. But more recently, I discovered independence has many different dances. As a parent you need to know what tune is playing. Is it a slow waltz, a quick step, or the funky chicken? Knowing the correct tune makes a huge difference since it helps you to know when to step in and when to step out.

I realized I was dancing to the wrong tune, an old tune. At that time, I knew if I backed up and gave Brandon space he would come around. Several days later we were able to begin to talk about when he needs me and when he does not. We are now in the midst of talking about it more and finding out what it is he really wants and does not want. I can see that this too will be a process much like everything else.

The reason I felt it was very important to write about this story is because sometimes we do not think our children or adults with autism are changing or growing, but as you can see with Brandon his growth and development continues on. Even when we do not see any changes for a long period of time we cannot give up. We must continue to teach in a kind way and step in and out to the tune that is playing at that particular time. Our special needs children and adults certainly keep us on our toes and as they continue to grow and change we must too.

Kicked Out of a Public Place

Thu, 09 Feb 2012 21:16:50 GMT

A few weeks ago, my son, Brandon went into a cell phone store and he was told to leave. When he got home he called me and said, “I don’t ever want to go back to that cell phone store again, they are rude.”

Yes, my son frequents the store often, but he is a paying customer and has had numerous problems with his cell phones. He does not express himself well and the sales people don’t understand him and find him annoying. I told a friend what happened to Brandon while at the store. He was livid. He said they have no right to treat people that way, especially customers. The next day, I called the store to talk with the manager. He assured me that he would look into the matter and take care of it and told me that the way my son was treated was unacceptable.

Since that conversation with Brandon, he went back to the cell phone store and was treated well. He called me and said that the employees at the cell phone store were nice to him. Was it because he just bought a new phone? I don’t know, but what I do know is that many of our children who have autism have a hard time expressing themselves and they too are often misunderstood and mistreated.

Is there an incident you would like to share about your child being misunderstood?

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.