Wednesday, 09 May 2012

  • Are You Moving or Staying?

    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?

     

Thursday, 29 March 2012

  • "Good Enough"

    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. 

Thursday, 22 March 2012

  • Plans Set in Stone

    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. 

     

Thursday, 16 February 2012

  • The Dance of Independence

    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.

     

Thursday, 09 February 2012

  • Kicked Out of a Public Place

    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?

amaliastarr

  • Visit amaliastarr's Autisable Site
    • Name: Amalia Starr
    • Gender: Female
    • Member Since: 10/1/2009

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