April Is Autism Awareness Month BLOG

​DAY FOUR 
 
April is Autism Awareness Month BLOG
 
How do we learn about, understand, and face autism? How can we become ‘empowered’?
 
< My Thoughts >   Here are some ways which may help –
 
Why is it that every family’s journey with autism so different?
 
There is a saying that – “There are as many different autism trajectories as there are patterns of snowflakes in a snowstorm.”

The ‘autistic’ brain with its unusual neuroanatomy, is somewhat of a mystery, because here is so much that we do not know about it.
 
What we ‘do’ know is that autism is a developmental disorder with ‘no’ apparent cure. Sometimes the ‘autistic’ brain sends mixed messages which confuses the person’s perception of the environment. ‘Co-morbid’ issues; such as anxiety, depression, and/or a seizure disorder may also accompany autism. Certain subsets and symptoms can be identified, tested, and treated, throughout one’s lifetime. How to go about this can become another mystery. But, giving up is not an option because you will know how the journey begins, but ‘not’ how it ends.

 < My Thoughts >         “What we ‘do’ know…”
​
In the title of my FREE ASD Book, Know Autism – Know Your Child: with < My Thoughts > by Sara Luker, I have tried to discover how to make autism ‘simple’ while knowing it is so ‘complex’. The ‘variables’ of the ‘autism journey’ seem to be endless. There are many opinions, healthcare professionals, and intervention services involved. The ‘constants’ of the journey are how the child/adult, parents, siblings, extended family, and caregivers are impacted. 

Senator, S. (2011), 12%  Autism care is done largely by feel, by trial-and-error more than anything else.  In autism treatment, it seems like the New Age meets the Dark Ages.
 
In Nat’s early days, my feelings were a chaotic mess.  Often, I felt ashamed of him because he was so different from the children around him.

< My Thoughts >     "...it seems like the New Age meets the Dark Ages."
 
“Know your child… give that child every opportunity to learn, based on what you know about him/her… change-up what isn’t working… or, come back to it later, but never, never give up.”
 
This works for children of all ages and in all stages of life.  As the changes occur.  It’s up to you to adjust to what you are seeing at that point and change accordingly.  In all its glory… or not.  Life with autism is always on the move… sometimes two steps forward or three steps back.  Keep your eye on the goal and celebrate the little achievements.  
 
6%     In the early days, nothing in my life remained clear.  Or when I did reach some understanding of Nat or autism, it would just as quickly disappear, because he would change again.  I thought that this was unique to me, but with years of therapy and growing up, I finally understood that all parents feel that way.
 
13%    We did not realize until it was too late that sometimes you don’t get more by doing more.

14%    In retrospect, Ned and I were guilty of the same mistake made by so many autism parents: pushing too hard, stretching our kid and everyone around him to the point of distortion.

24%    Perhaps finding a balance between chasing therapies, on the one hand, and accepting and simply enjoying one’s child, and one’s life, on the other, eventually allows parents to slow down the frenzied search and alleviate some of these depressive symptoms.

< My Thoughts >      “…finding a balance between chasing therapies.”
 
Therapies and interventions are part of the autism journey, but there are many considerations to be explored. Rushing, or being pressured into making a hasty decision may permanently jeopardize your child’s progress.
 
According to an article by Jane Johnson, managing editor of Autism Research Institute (2013), “parents are stretched beyond their limits.” She quotes another author Fingerman (2011) who says, “Parents are only as happy as their unhappiest child.”

Johnson goes on to say that the three most stressful factors are –   

•    Concern over the permanency of the condition
•    Poor acceptance of autistic behaviors by society and other family members.
•    The very low levels of social support received by parents of children with autism.

She says that, “Subjective parental pain and consequent stress went unobserved.”

Parents report that it’s not just that autism is ‘aggravating’, but the stress accumulation builds because, “My child rarely does things for me that make me feel good.”

 < My Thoughts >     “...make me feel good.”
​
Only ‘you’ can make yourself feel good about your life’s situation. As a teacher, it is heartbreaking for me to see parents and caregivers who keep insisting on pursuing what the child ‘can’t’ do instead of embracing what the child ‘can’ do. Sadly, parents often become so focused in changing their child that they have little time left to nurture themselves, their marriage, and the rest of their family.

​< My Thoughts >       “Progress toward peace of mind…”

In her book, Susan tells how different parents found their “peace of mind.”

38%     NancyBea focuses on fine-tuning Henry’s medication and his education program, along with the use of visuals and highly organized schedule.

Kim says her kids love amusement parks and carousels… they love to spin.  …we never let autism trap us in our home.

For Cathy, an ‘aupair’ solution was a godsend.  Of course, not everyone can afford that… but, perhaps you can find a local college student, guy or gal, to board with you.  (Maybe even someone who is studying child behavior or in a teacher education program.)

For some it’s belly dancing, for others is continuing with hobbies they love (painting, cartooning, & doodling).  There are those who write poetry, join competitions and escape for awhile.

Rebecca and Beth enjoy scrapbooking… alone, creating, recharging.  Then later sharing with the family who love to see what they’ve done with their pictures.

Alastair has built a nursery with a huge collection of bonsai trees.  His wife gave up smoking and began running marathons.

Bonnie is “so into having and caring for Beta fish that my family has threatened intervention…”

Eileen discovered motorcycling as her way of coping and creating balance.  “It is so much fun to play dress up… put on my leathers and my biggest earrings and go for a ride along the ocean…”

Susan reminded me that spiritual grounding can be an important aspect of self-care.  “I go to yoga class and to Zen meditation…”

Amy feels like she’s accomplished something when she feels sweat pouring down my face… I have burned four hundred calories with exhausting exercise.  Revitalized by a hot shower and renewed spirit.
 
< My Thoughts >     “Revitalized…”
 
For me, it’s Tai Chi! I attend classes when I can. When I can’t, I follow along on YouTube.

55%    The sun will come up tomorrow and we will still have autism within our family.  I can choose how I live it.

81%    We do not have to trade ourselves for our children, or our happiness for our children’s happiness.  Even something as confounding and difficult as autism in the family is not the end of a happy life.  Once we understand that, we will get there and it will all be OK.

82%    One day you will feel that something inside you has shifted, lightened.  When you look at your child, you no longer see a mass of problems, a broken thing to be fixed; you see you kid, just your kid.    
Begin your own ‘personal’ journey into the world of Autism. As the curious reader, parent, caregiver, clinician, therapist, and/or nursing student, ‘do the work’, join in the ‘search’ and research.
 
Reference:
 
Luker, S. (2024); Know Autism, Know Your Child with < My Thoughts > by Sara Luker; Retrieved online from – www.sarasautismsite.com
 
Johnson, J. (2016). Advice for Parents. Retrieved online from – https://autism.org/advice-for-parents/
 
Senator, S. (2011) The Autism Mom’s Survival Guide (for Dad’s, too!): Creating a Balanced & Happy Life While Raising a Child with Autism: eBook Edition.
   
End of DAY FOUR. Note: Excerpts from the book – (13% indicates location in the Kindle version of the eBook, instead of page numbers).
 
Sharing of my website and BLOG Comments welcomed.
 
Regards,
 
Sara Luker