April is Autism Awareness Month

Over the past couple of years, the word “Autism” has become a hot topic in the news and probably in a lot of other places.   Autism itself is a hot topic in the medical and mental health community, and continues to be studied and researched because the more we know about it – the more we come to realize we don’t know about it…  April is Autism Awareness month and it is my goal to share more information, resources, and links for anyone who needs more information on Autism.

Autism Spectrum Disorder

What used to be divided up into a number of diagnosis codes, has now been compiled into one “spectrum” or range of symptoms and behaviors.  There are categories within the symptoms/behaviors to help a professional make this particular diagnosis, and there is a range of severity as well.  What used to be called “Asperger’s Syndrome” is now referred to as High Functioning Autism (HFA).

The signs of Autism are vast and truly range from very minor to very severe.  One child be able to communicate seemingly well, with few behavioral challenges, while another child may be completely nonverbal, non-interactive, and appear to be unable to make progress.

Autism Spectrum Disorder is a neurological disorder with deficits in communication (verbal and nonverbal), which affects social interaction and understanding of social cues, as well as challenges in repetitive behavior (including hyperfocus on specific topics), which restrict behavior.  There may also be intellectual delays, developmental impairments, and other challenges that coexist with Autism.

Because we live in a social world – we are built for relationships – Autism can certainly present an interesting challenge.

More and more people are sharing their diagnosis of Autism/Asperger’s, such as Dan Akroyd and Darryl Hannah.  Characters in the entertainment world, such as Sheldon, from Big Bang Theory are often said to be on the Autism Spectrum, due to the lack of social reciprocity and understanding of social cues, obsession with specific topics such as Star Trek or collecting figurines, and some of the other more obvious symptoms.

The one thing I know about Autism is that NO ONE on the spectrum looks just like another person on the spectrum.  There’s a saying that “If you have met one person with Autism, you have met ONE person with Autism.”

While some diagnoses share common characteristics – one child with ASD may be obsessed with basketball and phone games to an obsessive extreme, another child may have challenges with potty-training (control issues) and is unable to recognize facial emotion.  In fact, Autism continues to be a “hot topic” in the medical field.  The diagnosis itself has been classified and reclassified and even doctors cannot agree on all of these things.

Our oldest, Curly, was diagnosed with High Functioning Autism last year.  This was formerly known as Asperger’s Syndrome.  She requires accommodation at school, has trouble understanding social interactions and completely misreads some social cues entirely.  She often appears to be calm and happy, and she rarely has any difficulty at school.

On the other hand, she can relax at home.  She has learned magnificent coping skills at school – her psychologist was impressed with her ability to navigate through the classroom experience without really understanding a lot of what is going on around her.  Her teachers rarely complain about her behavior, if they complain at all.  Instead, her distress becomes evident when she starts to miss assignments, and can’t remember assignments, and has complete and utter meltdowns because the transition coming home from school is more than she can manage.  Her meltdowns include crying, yelling, property destruction, and aggression with her siblings.  A complete and total opposite of what most people see at school.

I am not writing this to simply share the burden of Autism.  We fought long and hard to determine what was happening with Claira from the time she entered 2nd grade, until she was finally diagnosed at the end of 5th grade.  We deal with teachers who simply can’t believe the diagnosis because the girl they see is so sweet.  (Magnificent coping skills!)  She loves talking with adults, so teachers are some of her favorite people.

Understanding her disorder does not make the hard stuff go away, but it does help us learn how to help her develop healthy strategies for dealing with things she doesn’t understand.  It is a journey.  And April is a great month to share more about our journey, and more about the journey other families are on, as well.  I hope you will stick around.

 

 

 

 

Sometimes Telling the Stories is Hard

When I began blogging many years ago, the basis of my blog was just to update friends and family about the growth of my daughter, Curly.  I got married in my 30s and had her in my mid-30’s so it was a big deal – and not just for me.  Being able to communicate the life experiences as they came while working full-time and taking CARE of said baby was pretty challenging for me – especially since I was taking online college courses at the time.  I heard about blogging through work and decided to jump in and voila!  My writing had an outlet and my stories had a forum.  As Curly has grown, and Georgie & Little Man came along, there was more to write about.  But sometimes telling stories is hard.

As I wrote more posts about my family – about my journey as a wife and mom – and the huge challenges that came along (because LIFE!)  I had to learn how to balance privacy and respect with authenticity and openness.  I tend to lean toward TOO much information, and had to learn how to cut back on details and soften some sharp points.  I also found that people in my life – family members and friends – that I interact with on a daily basis, could become offended by certain revelations and references.

I have had some dark moments.  Days where being a mom was the LAST thing I wanted to be.  It has been exquisitely painful and I have had to process a lot of things about myself, my expectations, and my reality.  And I continue to do so.

I stopped blogging regularly – for quite some time – because I had shared some difficulties my family was experiencing and it stirred up some “stuff” that affected people in my life who have nothing to do with my blog.  So I tried to stop blogging about the personal stuff.  And then I just stopped blogging.  I even got to the point that I wasn’t even journaling in a notebook for fear that someone could stumble upon it “one day” and discover things that might be more fearsome than they could handle.  (and little by little, my spirit started to die in the process…)

What I learned is that NOT sharing the stories in some way is missing out on opportunities to connect with people who understand the struggle and who need encouragement too!!!

I have stories to share about the Autism Spectrum/ADHD, marriage, parenting, spiritual stuff, and family dynamics.  Can I just say that the ADHD/ASD alone has turned my world upside down!?!  It has been a long process and it’s shaken me and changed a lot of things for our family.  I am having to consider things for one child that I don’t ever have to consider for the other two.  The fact that our oldest child struggles with her ASD/ADHD is a big part of why I want to both share and respect her as I write about life.  Being married to a counselor has some great benefits, but being married to a counselor also means that privacy is a BIG issue and I need to be able to balance what I share with how I share it.

So, I will be writing more about our life – sharing the stories – and hopefully sharing not just the struggles (because THEY. ARE. REAL.) but also the victories.  I don’t  have everything figured out.  I don’t have all the answers for my own problems, let alone anyone else’s.  But I do know that companionship can bring great comfort.  Compassion can lead to greater understanding about life’s journey, and God’s work, and crazy circumstances.  And sometimes comic relief is something we ALL need!!!  I want to be able to share the Grace & Glory of the life God has given me most of all…

Are you a Tell-It-All kind of person, or Keep-It-To-Yourself kind of person?  How do you feel when someone shares what you consider to be “too much” information?  How do you feel when someone doesn’t share enough and you leave with more questions than answers?