Monthly Archives: August 2013

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!  


Begin at the beginning!

If there is ever a time when it all becomes extremely overwhelming, remember to simply step back, take a deep breath and start again.  Begin at the beginning.

Step 1:  Pick one behavior you wish to focus on.

Step 2: Have a conversation with your child about the behavior, explaining feelings and expectations.   Devise a simple plan to help you both succeed.

Step 3: Implement the plan.

Step 4: Praise! Validate! Reward!

I was recently trying to stop my kids from asking for impulse items at the Supermarket. About a week before my next outing, I sat with each of them and told them that some parents may find it OK to have their kids screaming down the supermarket aisle and or tugging at their sleeves at the check-out stand.  However, it embarrasses me when that happens.  I gave examples of embarrassment – to my 8 year old I reminded him of the time he asked me to stop kissing him at drop-off at school in the mornings.  To my 17 year old I described the time I met the “love of her life” and my ensuing interrogation.

My plan of action…

  • I purchased a small white board and mounted on a wall in foyer near the laundry room.
  • Whenever anyone ran out of an item or wanted a new item, they were instructed to write it on the board.
  •  When making my grocery list, I always included and purchased the item they requested.

I piled on the praise and affirmations of their effort, each time a child wrote on the white board.  At the Supermarket, sometimes I purchased more than one, especially if was a treat, and promised the second or third as a part of a reward at a later date.   It was amazing to see how quickly this plan worked!  My grocery shopping trips are much more enjoyable now!


Autism/ADHD – Planning Ahead Works! Back to School – Day One

Yesterday my 8 year old son went back to school.  Here’s the strategy we used:

ONE WEEK BEFORE SCHOOL STARTED…

A week ago my son and I developed his behavior goals for home and school for 3rd grade.  He created his DRC (daily report card), in his handwriting with his artwork.  We made 10 copies and I put them in an envelope addressed to his new Teacher.  The plan is that his new Teacher would be responsible to complete the DRC at the end of each school day, and sign it.  He would then bring the completed DRC home to me and earn points for goals met.  The classroom behaviors that we agreed that he would target this first semester were “complaining,” “interrupting” and being “argumentative.”  My son and I then worked on measurable quantities and rewards.  We also added “good sportsmanship” as a daily goal, where he would treat his classmates with fairness and kindness.

For home, his target behavior goals also included “being respectful,” “good sportsmanship,” “following rules” and “acceptable behavior” as he engaged with his siblings.   We started to make out his daily visual schedule that would eventually go on his bedroom wall.   We talked about him “taking charge” of some activities and “self-managing.”   On his visual schedule, we listed items like “Make sure homework folder is in backpack – with Mom’s signature,” and “Daily Chore” (he is in charge of recycling the water bottles)  that he would self-manage.  I then created a social story for him, which included examples of self-managing, listing activities he can take care of on his own without “checking in” with Mom.  We were both pleased with our efforts.

TWO DAYS BEFORE SCHOOL STARTED…

I called his Teacher, introduced myself and gave her the option of a face-to-face sit down.   We agreed to talk on the phone as she already knew of me from my communication/interaction with the school last year.  I reviewed our expectations and transition plans for my son, along with items on his IEP I felt she should be familiar with, on the first day of school.  I discussed the DRC with her and our rationale for the goals.  I encouraged her to email me as soon as she felt she wanted to make additions to it so we can revise.  I informed her to expect the package from me with 10 copies of the DRC and she can make additional copies as they were needed in class.  I also told her that I would be requesting an IEP date, as soon as school begins so as a Team we could identify ways the school can continue to support my son within the new school year.  I shared with her that social opportunities and support are important for him at this time of his development and that is an area I wished to address and collaborate with the school during the upcoming IEP meeting.  I once again told her that any input she can provide would be very much appreciated.   I took her email address and informed her that I would be sending copies of his daily schedule list and social stories so she can get a better understanding of our expectations at school and how he is being supported at home.

I also called the Office and spoke to the Administrator. I reviewed my son’s needs and asked if we could assign a “go to” person in the office and during lunch time, on the play-ground, with whom he would be able to “check-in” if he was experiencing any anxiety.   We established those persons and I relayed the names to my son.

ONE DAY BEFORE SCHOOL STARTED…

The big day before The BIG DAY!  I felt it was important to make today stress-free for my son.  It was a day filled with fun and excitement!  I took him to get his new haircut.  We went shopping so he could pick out some special items he would be using at school (small items like funny erasers, etc.)  Then we went to pick out his BIG prize that he had earned for completing and doing so well at STP Camp.  He picked out a new game for his Nintendo DS!  We went swimming, one of his all-time favorite activity, then had lunch with Grandma.  We came home and he played his new game for two hours; his second all-time favorite activity!

Later that evening, he followed his nighttime routine reflected on his visual schedule, which included reading his social stories for his school day tomorrow, then, it was off to bed!

SCHOOL STARTED TODAY!…

My Son got up and followed his routine.  He was checking in with me when he needed to and everything was going well.  Right before we were all loaded into the car, I went to review his schedule.  Not one item was checked off.  I called him over and asked “Why are there no check marks on your schedule?” He gave me a look of supreme exasperation and replied, “Imemorized it, Mom!   I do not need to put check marks.  I got it all right, didn’t I?”  I complimented him on his the great job he did this morning!  Then I gently explained to him the benefits of placing the check marks and asked him to do me a huge favor and check off the items he had already completed!

At pick up time, he came bouncing toward the car…  “4 out of 5 yeses on my DRC, Mom!  I earn my privilege today!”   My response was a resounding, “Yippee!   Don’t we love STP!!!”  When I asked him what he missed, he told me that his teacher got after him for interruptions.  He said, “Mom, I asked her to change my seat.  She had me sitting next to a girl who talks a lot! ”

DAY #2 AT SCHOOL…

Today when I picked him up, he came bopping toward me yelling, “5 out of 5 yeses on my DRC!”  “Shall I do the happy dance?” I squealed.  He looked around at all the kids getting picked up and the Teachers at the gate; gave me this conspiratorial look and said, “Let’s just keep that between us.”  The journey has begun…

“Anticipating the A’s” and getting ahead of the potential set-backs, make a world of difference for our kids.  Working as a TEAM in concert with the school and his Teacher is vital.  There is much harmony when we are all singing from the same music sheet!  These efforts also set our kiddos up for success and reduce negative behaviors in the classroom and at home!   Parents… it is imperative that we take the lead –  we are Empowered! Until next time…


Autism/ADHD Back To School Tools

BACK TO SCHOOL TOOLS    by: Nellie Valentine

Hi UCI STP Parents!  I wanted to share some of my strategies with you in hopes that it can be of some help.  Many wonderful people have helped me along the way and I feel it is important to pass on my knowledge and pay it forward!  I have been receiving Parent Training for the past 13 years.    Later, I will share with you some of my Back-to-School transition strategies but before I do that, I want to make a couple really important points.

  • First, structure, order, and calm are really important to kids with Autism and ADHD.  Having a home that reflects that is very important.  Also, as parents, when wemodel what our expectations are for our kids, they learn most and succeed best.  If we as adults in the home are constantly shouting at our kids and escalating with them, while simultaneously having the expectation that they do not tantrum… Then, we will find that it will be a long painful journey toward success.  “We must become the change we want to see.” – Ghandi

Second, over the years I had found that I eventually had to be one hundred percentcommitted to this process…   My kids have achieved the most success when I have made these practices we have learned at STP (and what I have learned over the years) a daily lifestyle.  Here are my five “Takeaways” that I ensure are solidly in place at my home.

1. Establishing Rules and Expectations will be the cornerstone of our success.

2. Communication with the family is vital.  At home we have family meetings (I gather all the kids in the living room for three minutes) and discuss the plans for the day or a change in our programs, etc.).  We also use social stories, role play, “Chat with Mom” – this is where I talk about individual goals – I never want my children to feel singled out or embarrassed about their challenges.  We also utilize goal charts, earning and giving rewards and so on…   This is our way of life!

3. Words Matter… Praise and good positive constructive feedback are vital to our kids’ self-esteem.  Our kids are pretty smart!  They feel great when we validate them. There is this inspirational Maya Angelou quote… “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”   I work hard at creating memorable praise and validating moments with my kiddos.  It makes them thrive!

4. ABC’s (Antecedent, Behavior & Consequence)…  “Anticipating the A’s” is my personal mantra as a parent.  Planning, reviewing, discussing and negotiating an event before it happens, makes all the difference in the world.  I attribute much of our success at my home to simply this…  “Anticipating the Antecedents.”

5. Consistency is critical.  There can be no wavering here… and if it all falls apart one day, I immediately start over the next day.  I make certain to follow the plan.  ABA Treatments work!

With that in place at home, I follow the same processes when “Transitioning” Back to School.  Here are some of my best practices…

  • Create Social Story with my child’s full input and participation
  • Create new school goals/rewards system with my child’s full input and participation
  • Create Schedule (same as above)
  • Call my child’s school to find out who the new Teacher is… Visit classroom if possible…Teachers are usually there setting up two days before class starts.  I share with my child’s teacher about STP – Summer Camp.  I describe the Elite Team that supported them (and me) this past Summer and how prepared we both are to begin school on the right track. I share my desire to continue with that success!  I share ourExpectations/Transition Plans and how the program we have at home works… I inform the Teacher how we plan to follow through on what was learned at STP.  I ask for his/her feedback and input.  Finally, I review last year’s IEP or 504 Plan with the Teacher.   I provide them with a copy featuring highlighted areas I feel are important to point out to them about my child’s needs.
  • When I get home, I immediately send an email to confirm my interpretation of our conversation.  Hopefully if the Teacher has questions or comments, they will get back to me.
  • After my visit with the Teacher, I pop my head in and say a quick hello to the Principal.   Let them know I am present.
  • My child and I review the new Social Story daily one or two weeks prior to him starting school.
  • Immediately (on day one) when school begins, I send a written note to the Administrator to schedule an IEP or 504 Meeting for the new school year.

I truly hope this is useful information for you.  It was a pleasure being in the class with you!  We belong to an exclusive club and I feel we must support each other in order that we may effectively support our kids…  Here’s to a great new school year!  Let’s stay in touch.