The Limitless Journey of Hope and Change

“Here, my new friends gave me their phone numbers.  Invite them to the climbing place for my birthday.  Okay?”  He gives me three crinkled up small strips of paper, all warm from being balled up in his hand.  I unwrap each one as we walk home and read the kid-written names and phone numbers on each.  My heart warms.  He made these friends.  He asked for their phone numbers.  All by himself.  He didn’t know these three peers in August and now, at the end of September of his 4th grade year, he’s decided to start planning his November birthday party with an eagerness and confidence I have never seen before.  

Such budding friendships have been instrumental for Brady’s positive self-image, his confidence.  These friendships continue to help him learn the nuances of interactions and social cues. 

Brady walking to school with Daddy one September morning

Going back almost five years ago today…

Place Brady in a mainstreamed classroom for elementary school?  A classroom of 25-30 children?  I couldn’t imagine this, and neither could any of his preschool teachers at the time.   Brady had what his autism preschool teachers referred to as ‘maladaptive behaviors,’ those repetitive, sometimes destructive behaviors that hurt him socially and adversely affected our family’s life as well.  He had spent his preschool years in a classroom with five other kids on the autism spectrum as part of a special education program designed to diminish those ‘maladaptive,’ highly ‘sensory-seeking’ behaviors most often seen in kids on the spectrum. 

At the time, Brady was only diagnosed with Attention-Deficit/ Hyperactivity Disorder (ADHD); he didn’t receive his official autism diagnosis until the age of eight.  However, he was a member of the preschool autism class, because to paraphrase an old saying:  When it quacks like a duck and acts like a duck, maybe it needs to be helped as though it was a duck. 

Pointing at the special education school bus arriving to pick him up for his preschool
Stepping off the bus at our home four hours later

My Brady, who was verbal and full of endless energy, had problem behaviors that affected his ability to focus, to learn, and to be socially appropriate (Do we notice others at all and how we are influencing their reactions to us?  Unfortunately, no.).  This kid couldn’t sit still for 30 seconds without untying his shoe, chewing on his shirt, picking scabs on his banged-up legs or all of the above.  The mice in his brain had gone wild and the screws seemed loosened or partially missing.  I had no idea what the future held for my son at the time, and so I was forced to look through a myopic lens and focus on the very small goals that would become the building blocks to loftier goals.

Goal 1:  Sit still for one full minute without being destructive to self or materials (clothing, paper, etc).

Once that goal was achieved through ABA therapy techniques that his teachers fully employed in his preschool classroom, we could move onto a larger goal.

(ABA stands for Applied Behavioral Analysis is a type of therapy that focuses on improving specific behaviors.  Positive reinforcement is one of the main strategies used in ABA.  When a behavior is followed by something that is valued (a reinforcement), a person is more likely to repeat that behavior. Over time, the theory is that this encourages positive behavior change.)

Goal 2:  Listen to the story for 1-2 minutes at a time with small stand-up breaks as incentive.  Be still, be safe.  Hands to self.

New goals would be introduced once old goals had been consistently mastered (i.e. Brady was able to sit and listen for three minutes during 4 out of 5 trial times in a one-week period).  These goals were very precise and detailed, and teachers and aides were required to keep daily data on every child in that six-child autism classroom.  Of course, each child was working on their own personalized goals, made more achievably possible by the very low student to teacher ratio of 2:1. 

The rigidity and consistency of this small autism class was critical.  I quickly discovered that the intensive behavior training (ABA followed to a ‘T’ at its finest) worked miracles for Brady and these kids.  Some goals took months to achieve but the students became highly motivated because of the support and resources that were available to ensure their success.  This preschool would change the trajectory of Brady’s life from that point forward.   The entire experience changed our lives because we were taught how to parent him effectively, how to ‘reach’ him, and really, how to see him through a whole new lens. 

He didn’t have missing screws and those mice that were darting back and forth in his beautiful brain were trainable once I rewired my own brain so I could understand how his operated.  Sure, his brain had quirky, immature reactions but that didn’t mean he wasn’t capable of learning, that he didn’t want to be included and be seen as an equal amongst his peers.  No, he was just wired differently, and I began a slow journey of softening my own eyes to the beauty of being truly unique, of not fitting into a pre-designated, standard looking box.

“The National Institute of Mental Health found that the certain sections of the brain in people with ADHD mature slower than those without ADHD.  This delay occurs mostly in the frontal lobe, the part of the brain that is responsible for impulse control, concentration, attention, and planning.” 

– Excerpt from “Can a Brain with ADHD Look Differently?” found on www.healthline.com

Brady frequently had something in his hands he was fidgeting with or taking apart.

Fast forward to the current school year, Brady’s 4th grade year at his local elementary school.  This is his second year of being mainstreamed (included as a member of a general education classroom).  Have Brady’s maladaptive behaviors been extinguished?  Yes and no.  He isn’t chewing on his shirts anymore.  He only occasionally picks a scab (Doesn’t every kid?).  He still needs frequent breaks but that varies from day to day.  Somedays, he may only need one brief two-minute walk down the hallway into a less distracting (smaller, quieter) room to finish up his work.   However, somedays can be very challenging for Brady.  He can be less self-regulated (able to control his impulses to bite on his pencil, peel the wrappers off his crayons, invade another student’s personal space, for example). 

Why are some days harder for Brady than others?   

Perhaps the more relevant question is:  Is it still beneficial to have him immersed in a classroom of peers who model ‘ready-to-learn’ behaviors, demonstrate appropriate social skills, and access grade-level material? 

Brady is just like a regular almost-ten-year-old in many ways.  If his sleep-time wasn’t so great, he may be more restless, making it harder to get work completed during the school day.  If he didn’t eat enough lunch (although I always pack plenty and include lots of protein), he can have trouble keeping still and finishing tasks.  His interfering behaviors may escalate and distract other students, and in this case, the aide takes Brady outside the classroom to a quiet room for a brief break. 

For Brady to be successful in a mainstream classroom, he has support that comes in various forms during his day.  For example, his classroom has an assigned aide who helps redirect and support all the kids in the classroom, but especially those with special needs.  This piece of support is so critical because it allows kids like Brady a fair opportunity to be immersed as equally as possible without disrupting the classroom learning environment.  Brady’s classroom has several children with special needs of various types (ADHD, autism, dyslexia, e.g.).  They are all valuable, able-to-learn members of the class community who occasionally (or seldomly or frequently) need additional help which may take the form of:

  • Extra encouragement to complete work;
  • A quick break from the environment to restore their focus;
  • Reading assistance;
  • Extra reminders to help stay on task;
  • Small group pull out sessions for certain academic subjects.

Yes, some days are harder for Brady for just the same reasons they may be harder for other kids, but there are some days which are clearly more strenuous because Brady IS DIFFERENT.  His brain feels things differently, processes information differently, and therefore he reacts differently.  He cannot help how his brain is wired. Can those that suffer from anxiety force themselves not to be anxious?

What he can do (and what teachers, and others who work with him can also do) will help him become more self-aware so that he will recognize when he’s not able to handle something (a task, his emotions, impulses).  In conjunction with becoming more self-aware, Brady can (and is) also learn coping skills from his sources of school support (e.g. counselor). 

Helping someone like Brady become self-aware will in turn help him to learn how to SELF ADVOCATE.   Self-advocating is such an important step for kids with disabilities.  Brady is incredibly lucky to be a verbal autistic child.  As a parent to both a child with autism/ADHD/Sensory Processing Disorder/Seizure disorder AND three other neuro-typical children,  I can say that I truly want all my children to become more and more self-aware as they mature so they will confidently and stubbornly speak up whenever they need a helping hand, a listening ear, or validation/support on an issue.

Brady's self-portrait from September 2019

The theme of this week’s FTSF post is pioneering (Visit www.mardrasikora.com for more posts on pioneering; her beautifully themed photo is included below).  Consider this definition of pioneer: “a plant or animal capable of establishing itself in a bare, barren, or open area and initiating an ecological cycle.”  In a way, kids like Brady are pioneers when they can successfully transplant themselves to a completely new environment and alter the way others in that setting view them.  Special needs kids can do this thanks to the crucial support of teachers, staff, therapists, and parents.  Although Brady must work extra hard to maintain focus, he greatly benefits from being in an open, inclusive, diverse environment. 

“The greatest challenge in life is to be our own person and accept that being different is a blessing and not a curse.”   

 – Kilroy J. Oldster, Dead Toad Scrolls 

Dear Brady,

Keep being that unique child who initiates change in others. 

Know that you can keep pioneering no matter what the terrain,

when you have the love and support of friends, family and your school community.

We are all here for you.

Love, 

Your biggest advocate,

Mom

 

 

 

 

 

 

 

 

 

 

 

 

 

 

This Post Has 6 Comments

  1. Kristi Campbell

    I love what you did with the prompt and completely agree that being able to self-advocate is huge. Our kids (and all kids) really need to know it’s ok to speak up and ask for a break, some extra help, etc. And OMG Brady! So so cool that he asked for his friend’s phone numbers and is so excited already for his birthday! That warms my heart.
    I will forever be thankful for our kids’ preschool experiences and ABA, and Mrs. M who taught me so much about interacting with my son. I love the photos of little Brady too! Awww! They grow so quickly. His self-portrait is fabulous!

  2. Adelaide Dupont

    Don’t ever underestimate the non-verbal self-advocates [or at least the non-speaking ones].

    My many friends at for example the Aspergian really amplify the voices and feelings.

    Yes – it is powerful for parents.

    My favourite part was what you acknowledged about the “quirky immature reactions”.

    Yes – these lunchtimes among parents; students; friends are wonderful.

    1. specialmomma

      Thanks for commenting, Adelaide. You are so right – everyone can learn to be self-advocates, even those who are non-speaking. Brady is wonderfully quirky. He’s helped me be a little more of myself.

      1. Adelaide Dupont

        In some ways – Rebecca – a lot of yourself.

        Which is so clearly reflected here on Being Brady.

        And, yes, self-advocacy is a learning process.

        It was Mel Baggs who has shown so much from sir time in institutions in the 1990s and 2000s – Cal Montgomery too – there was a really good Autreat talk from the mid-2000s that Baggs and Debra and Tisconik did.

  3. Mardra

    Yes to all this. Brady is a pioneer in his classroom and life, for sure!
    Your family’s openness to learning about his needs and challenges, while also celebrating, is certainly teaching the world, while you each learn yourselves, about the importance of space and supports for every person.
    Go Team!

  4. Tamara

    I.. still pick my scabs. So yes to that.
    I can’t believe the diagnosis was at eight. I don’t think I knew that somehow? I love your open and descriptive writing about Brady, his world, your world, the world, and the journey.
    It’s really eye-opening and powerful.

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