Autism/ADHD: The Upside-Down Life!

I am not sure I would describe myself as neurotic.  However, most of my friends would describe me as having a healthy appreciation for preparedness.  When I learned I was expecting my first child, I read with great excitement and anticipation, the “What to Expect” series and any other prenatal and early childhood development books I could get my hands on.  One night I was giving my now sixteen year old son a bath; he was about three-and-a half years old at the time.  The tub had quite a bit of water and was filled with soapsuds… It was our nightly routine that I would sit on a step-stool adjacent the tub and read the daily newspaper, while he had loads of fun with his rubber duckies and froggies.  He was enjoying a leisurely frolic in the bathtub for quite a while when he noticed his fingertips were shriveled.  He began to rapidly rub his fingertips against each other, as if trying to fix them, with this strange distorted expression on his face.  I swear it was reminiscent of one of those horror movies.  When he saw his fingers remained shriveled, my son began to flail and thrash about, screaming loudly and he would squirm out of my hands, each time I reached out and tried to settle him in or get him out of the tub.  His adrenaline was in high gear!  I was wearing a red and white linen business suit and my increasing concern escalated to sheer panic when his screeches became so high and thrashing so rapid, that I eventually I jumped into bathtub with him, fully clothed down to my pantyhose.  I sat down in the water, grabbed and held on to my child, rocking him to calm, my heart racing.  I held on to him for dear life, rocking and whispering soothing words, and we were both shivering by the time he was settled and ready to leave the tub.  This was my first real acceptance that something was very different about his behavior.   I was seeing a pattern… I recall having the fleeting thought in that moment, that no page in any of the “What to Expect” or other books I had read, ever described such a scenario.  Nothing prepared me for this.  I distinctly remember my feelings of bewilderment; profound fear; and extreme concern as I sat in that bathtub that evening.   Our life was “Upside Down…”  This is not the way it was supposed to be!

Of course at that time, I was a new Mom and had no frame of reference so to speak.  Intuitively though, I knew a cause for alarm was very much in order!  I began to look, but was not getting satisfactory answers.  A couple years later, after a similar experience, I can recall wrapping my arms around my stomach and sinking into a corner wall of my living room and sliding onto the floor in total disbelief, thinking “This can’t be happening!  How do I fix this?”   I decided to do some research on Behavior Modification (largely with the help of an Autism Specialist).  I chose ABA Therapy and made the personal decision not to medicate.  I am not advocating one position or the other – simply giving you the facts about my son.   And so our journey began…  He is now sixteen years old settled, composed, a terrific citizen and member of our community, and a high school Senior.  Four years ago, when looking at his class options, I had requested that he take a Drama class to enable him to have some interaction with typically developing peers.  He has continued to take Drama every year.  Last year, as a Junior he participated in an ensemble play where he was a part of a support cast of about 30 students.  Prior to going on stage, he kept bouncing from group to group as the kids were practicing their vignettes before the actual performance.  The interaction with his peers was authentic.  The teens would simply turn and say, “Oh, hi …” In fact, for the most part he was almost invisible, just another teen in the group being a part of.  He looked and acted no different.  Then they all huddled in a circle before it was time to take the stage, giving chants and shouts of encouragement.   Approximately twelve main characters were featured in individual vignettes, narrating his or her story, and the supporting cast chimed in when appropriate.  There he was on stage – at the age of 16, and standing 6 feet 2 inches tall – statuesque, fitting in just fine with his peers.  My son stood on the stage with the support cast for almost two hours, in full flawless participation.  As a part of the support cast, they would all recite their script to back-up the main speaker.  They had to show expressions of sorrow, joy, exasperation, frustration, and determination to name a few.   They even had a tantrum scene, whereby they threw themselves on the floor pounding their fists.  My son did not miss a beat.  For one segment, as they saluted, he was synchronized in precision with the rest of his cast.  He was phenomenal!

Watching my son perform that night; the feelings that engulfed me were not pride, nor relief, nor satisfaction, nor joy.  The overwhelming feeling I had was peace.  I was not surprised that he was successful.  His amazing High School SDC and Drama Teachers, Behavior Interventionist, Case Managers, various Therapists and a plethora of other professionals now and throughout the years, have worked diligently with my son.  It has certainly taken a Village.  Today, he is exactly where I expect him to be.  This is a journey that started at the age of three-and-a half in that bathtub.  At that time, even though I was overwhelmed, after regaining my composure I chose not to focus on my perceived loss and potential difficult journey.  I chose instead to focus on the solution.   As a visionary and global thinker, I began to chart his life’s course, carving a path for him to successfully live with Autism, ADHD and Intellectual Disability.  My reflection on that night of his beautiful performance, were the years of ABA, Speech Therapy, OT, and then some.  The years of teaching him good grooming and hygiene practices; helping him brush his teeth through the sensory challenges; and along with that, our battles to get him to use the appropriate attire so he can successfully interact with peers.  Also, and most important, the years of daily practice helping him learn to focus and manage his behavior and emotions.  He had come a long, long way from that bathtub.

Of course, I share to teach.  An important take-a-way that I hope resonates is what happenedbetween the ages of three-and-a half and sixteen.  Even though I did not know quite how to chart a course, I realized that it was necessary and I sought to do so. To all of you who may experience your “Upside Down” moment and some sense of overwhelm, I can assure you that it does pay off if you devise and stick to a therapeutic plan.

Additionally, KISS.  Using the KISS (“Keep it Simple, Sweetie”; “Keep it Simple, Sport”) concept has worked for my family.  I recall a very long time ago, the same Autism Specialist who worked with my kiddos, advising me not to chase rainbows and simply stick to ABA Therapy for Behavior Modification.  She also passionately encouraged me to work collaboratively with those supporting my son and refrain from waging potentially ugly legal battles.  Sometimes as difficult as that may have been – as parents we get so riled up when we feel our child is being short-changed  or under-served –  I stuck to her advice.   Here are three practices that have proven successful for me the past thirteen years.

1.  Attach yourself to someone with expertise in the field of Autism and/or Behavior Modification.  Oftentimes when we think of experts we think of persons with world renowned fame.  I will admit I have indeed met one or two of those very famous individuals in the field of Autism.  However, I have also met many amazing qualified professionals with great knowledge and expertise in particular areas, like Educators, Physicians, Nurse-Practitioners, Therapists, ABA Specialists, Social Workers, School Psychologists, Administrators, Clinicians, etc. who are serving kids with Autism, ADHD, and other disabilities and Behavior Disorders.   In addition to garnering as much knowledge as you can, I would advise you to start cultivating a relationship with one or more of these individuals and ask their permission to pick their brain once in a while.  Then, when you experience a setback, take the scenario to them and ask for advice on how you or your child may overcome it in the future.  There is an enormous wealth of knowledge out there, from truly gifted, amazing people who genuinely care!

2. “Anticipate the A’s”  (smile).  I know that is a ridiculous term.  However I gladly own it! It is my personal mantra.  On a daily basis and in every situation begin to train your brain to think ahead and ask yourself questions like… “At what point, during is this activity, will my child want more attention (‘attention seeking’)?”  “What do I put in place to go above and beyond so he/she can feel great about today or this event or himself/herself?”  “At what point, will my child get bored?”  “What is his/her tolerance level?”  “How much does he/she enjoy this activity?”  “Will he/she be jealous because his/her sibling is getting all the attention?”  “How much of this behavior is uncontrollable?”   For me, this has become second nature after all these years.  Anticipate the Antecedents and plan accordingly, then plan some more.

3. Always include your child as a part of the solution.  My dear friend, Robert John Moors (RIP), used to say to me, “BMSNP” (Bring Me Solutions – Not Problems).  Helping your child understand that they can overcome some deficiencies by thinking and planning ahead, as well as learning ways to feel self-validated,  will establish some important coping tools they will learn to adapt and utilize as lifelong skills.  When having one-on-one “Chats” with my kiddos, I oftentimes suggest to “Let’s find a way to resolve the drama taking place in your head.”  [I am certain that there is an amazing clinical term that exists, for that concept; and that is precisely the reason I am inviting the Experts to blog in this space!]  I almost always follow that statement by saying, “Let’s anticipate the setbacks and plan solutions.”  We work on the “What if’s” and we role play scenarios.  In our household, the “Timekeepers Clock” comes in real handy in some of these instances. I will dedicate a Blog to this at a later date.

Until next time…Remember; always take the lead in shaping your child’s future.  Do not rely on, or expect others to be as vested in your child’s abilities or outcomes as you are or should be.  Remember, you are Empowered!