Wednesday, May 22, 2013

Autism Mom – Finding A Balance

As parents who work to facilitate learning/therapies for our kids who live with autism, we tend to put ourselves last.  I am no exception to this, and I fight the struggle of achieving a balance of priorities in my life regularly.  After all, getting through the day in our sort of household is about prioritizing, right?  I have come to realize over the years that what it really takes for me to feel happy is to have a state of balance in my life. 

When you are a family that is at the beginning of your autism journey, right after you receive the autism diagnosis, you basically just go on “survival mode.”  You do what you can as you prioritize the needs of your child.  As time passes and you sort of get into the swing of things: managing the household while facilitating schooling, therapies and appointments, you realize that hey, if I don’t take a time out to take care of myself, I will eventually get sick or simply burn out of doing the daily grind.   The problem is that we don’t have time to get sick and burn out, but our immune system is at higher risk when we are stressed.  More often than not, our kids get sick, it circulates to everyone in the house, and by the time it reaches us, we don’t have time to rest because we are taking care of one or more little ones who don’t feel well.  We have to stay healthy and well to manage the load, and it is always much more stressful when someone gets sick.  I am guilty of having said "I just don't have time to take care of myself," but what I was really feeling was more like: I just don't have the energy to take care of myself while dealing with a full load.  The only thing left to do to combat this dilemma, was to reshuffle my priorities and not forget to add myself onto the list this time.  In fact, why not just make a new list altogether?  So here we go:

My 7 personal must - haves for achieving a sense of well - being and balance

1.  Getting good sleep and proper rest
2.  Nurturing my marriage, family relationships and friendships
3.  Daily/weekly physical activity - Going for walks, being in the sun, breathing fresh air, stretching
4.  Seeking counseling support services when necessary
5.  Staying plugged in to my autism support group/networks – seeking and providing support
6.  Taking vitamins and necessary medications daily
7.  Staying connected to my creative/spiritual outlets – personal development and achieving  self-fulfillment from the things I love to do.

These “must haves” for me, are things that I have found along my way in my personal journey of being a mother who juggles: parenting a child on the autism spectrum, twins, military lifestyle, with a need for a creative outlet.  These are things that I have found that I cannot give up or live without.  I share these to provide support to others who may be dealing with something similar, in finding your own sense of balance, as you progress in your personal and family journey.  

So take that time out for yourself weekly, and daily and do something that brings happiness to you every single day.  If you wait for some point in the future to do this, you may realize that you’ve spent days carrying on and not having done anything for yourself that makes you happy – how fair is this to our kids?  I see this as equally important to doing everything else on the priority list.  It took me some time to finally get to this point where I am making this a priority.   It takes effort every day to keep it on my conscious and I am much more happy and fulfilled now.  I have found my balance and will continue to work on keeping it daily.  I will close off and wish you happy trails in finding your personal balance and share one of my favorite quotes: “When Mama’s not happy, ain’t nobody happy.”   

To new beginnings!

Wednesday, May 8, 2013

A Cure for Autism? Thoughts and Reflections

There are some strong feelings circulating in the autism community about the idea of a cure, or a recovery, in regards to autism.  While this is a tricky subject to discuss for various reasons and opinions, I often think about the idea of a cure and what the future may bring.  Where does my own comfort level fall within this spectrum? What do I think about a potential cure for autism within the near future? Where do I envision our society heading in this collective journey, in what is still largely a mystery?

I have read many times about parents being offended at the idea that their child would even need a cure, when he or she is not sick.  After all, autism is a neurological disorder, and not a disease like cancer, heart disease or diabetes.   I completely understand and can relate to these sentiments.  There are parents who feel that autism is as much a part of their child’s personality, as their hair and eye color is a permanent physical attribute that a child possesses; this being a part of their core make up.  Utilizing a cure (if it were even possible) would then imply that we are going to and/or want to change our child’s personality.  In that sense, it is a difficult concept to break down and process.  This would also present other challenging questions such as: if a child is more severely autistic, does autism make up a larger part of his or her personality?  This makes the issue of a cure even more difficult to take in.  I am one of those parents who believe that autism is a big part of who my child is.   It doesn’t define who he is, but it does play a large part in how he perceives the world, and every interaction that he experiences.   

Alex and I believe in teaching skills through therapies (specifically ABA therapy and then to a slightly lesser degree, speech and occupational therapies) that break down learning into smaller steps with lots of repetition on a daily basis.  We have many friends who take various approaches to treatment that work for their child and their family.  We are not seeking to impose our view of therapy on anyone – we are simply sharing what works for us.  We also stay open to the idea that at some point in the future, there could be a cure to some or many symptoms associated with autism.   This would possibly help with anxiety during transitions from activities and helping the ability to better focus during certain activities.   We already know that there are medications out there that help reduce anxiety.  We know of Ritalin, which helps those coping with ADD/ADHD focus more easily. Similarly, we also know that in autism there are parts of the brain that don’t send signals as effectively to each other, causing a weakness in responding to certain social situations.  What if in the future a treatment were to be found to help with those connections in the brain in autistic individuals?  While it is not possible now, if a scientifically recognized and accepted treatment became available in the future, we would not be closed off to it.   

Jake's class - reading activity

For me, the idea of a cure is not a cure in the sense that one would have a single or even several treatments and be “cured” or “recovered” of autism.  I think of the idea of a possible cure in which a treatment would help with certain symptoms of autism, but not wiping out the autistic traits.  There are parents out there who report that their child was autistic and has recovered from autism.  There are kids out there who eventually lose their autism diagnosis.  It is hard to know what to think about such scenarios, as every individual with autism is so different.  From the reading and research that I have done over the past few years about the subject, I have come to believe that although someone can make huge strides in therapy, there will always be natural autistic tendencies in a person, and while he or she may “blend in” to the rest of society, they will have to fight natural autistic tendencies as they cope through the use of tools and skills acquired along the way in order to fit in.  Depending on the severity of autism in that individual, it may be a harder or easier task to do so.

I keep a realistic approach to what we need to be focusing on now as far as teaching functional social and academic skill building, and I don’t have a false sense of hope for a potential cure.  I do however think that with more awareness about autism, as more kids get diagnosed and plugged into therapies, and funding for autism research continues to grow, it is not far fetched to think that medically treating various symptoms of autism can be attained during our lifetime.   

The Sensory Room at Jake's school - the Autism class spends time there during the day

Another aspect of a cure that is also valuable to me is the idea of a healing taking place in our society.   I envision parents continuing to make connections with other parents in autism families, providing support to one another, and promoting a sense of well being and supportive atmosphere as we lift each others spirits. 

I discuss in other posts how autism affects the entire family and how parents have to keep it together daily.  The stress that this produces can sometimes be debilitating on parents emotionally, on a personal level and in a relationship context with one another; not to mention the affect it also has on siblings.  While many of us focus on the daily tasks to maximize learning while keeping our eyes out for a potential cure, we shouldn’t forget about being supportive to one another in the present.  Let’s help keep each other going and moving forward in this journey as a community. 

Meanwhile, we will do what we can to facilitate learning and setting our children up to lead a life that is as fulfilling and as independent as possible.  In the case that we don’t find a scientifically proven cure, we will always know that we did what we could to safely provide the very best for our children as they move forward in their own journey, with the tools, skills, support and love that they’ve been provided with all along the way.

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