Bigger than Barclay

Amy Nielsen shares what inspired her to start the blog “Big Abilities” and explains her hope to help shift the mindset in families who have children with developmental disabilities to focusing on their child’s strengths in addition to their struggles.

What if all day, every day you were forced to focus on what you struggle with?  What if you had to spend hours and hours trying to get better at something you have no interest in?  What if the people around you were continuously talking about your weaknesses?  Unfortunately, this is the space where so many children with developmental disabilities live. Continue reading “Bigger than Barclay”

The Bystander, The Mother & The Son

Amy shares an autistic meltdown story from 3 points of view: a bystander, the mother, and the child.

The Bystander

You just got off a race car attraction at a theme park with your wife and two kids, ages 6 and 8.  The ride exits into a flashy showroom full of sleek looking vehicles.  A shiny, black pick-up truck, a large gray SUV and a fiery red sports car are just a few of those on display. The doors of each vehicle are wide open beckoning guests to hop in.  Your kids climb into the black truck and pretend they are off-roading.  Next they jump into the SUV and pretend they are you and your wife taking them to soccer practice.  Lastly, and most excitingly, they rush over to the red sports car!  A small boy, who looks to be around 4, is in the driver’s seat.  A woman, you assume the mother, is sitting in the front passenger seat. A man, you assume the father, is standing outside the open door of the car next to the boy. Your kids hop into the vacant back seat to wait their turn.  Continue reading “The Bystander, The Mother & The Son”

We Survived & Thrived: Why Vacations & Time Spent With Family is so Important for Children on the Spectrum, Even if It’s Difficult

Amy shares how her fears of taking a recent family trip were eased when things went better than she expected.

I was dreading it like a root canal.  Two 3 plus hour flights, a three hour time zone difference, staying in an unfamiliar location, eating unfamiliar food, being around unfamiliar people:  all these are things that could potentially disrupt the very important routine my nearly four year old son with autism and ADHD thrives on.  Disruptions in his routine can have severe side affects such as meltdowns, aggressive behavior, as well as sleeping and eating issues.  In addition, I am hypersensitive to him disturbing other people, such as on airplanes.  The second he kicks the seat in front of him or gets loud I feel my cheeks burning, my heart racing and my anxiety starts to skyrocket. I had a thousand concerns about our upcoming family trip.  What if we get kicked off the airplane?  What if he has a hard time adjusting to the new time zone?  What if he doesn’t play well with his cousins?  What if our family thinks we are bad parents?  What if, what if, what if.

As it turns out, a lot of what I feared did happen.  The two 3 hour flights on the way to California from Florida to meet up with my husband’s family were pretty rough.  Fortunately, the lady in front of my son was very understanding. I tapped her on the shoulder prior to take off and told her my son had autism and ADHD and may kick her seat but that I’d do everything in my power to stop it.  She was a very kind pediatric nurse and said it’s no big deal.  My son was in his car seat so his legs were at the perfect angle to kick her seat and he did, pretty much the entire flight.  Despite my attempt at distractions, despite my attempt at holding his feet, he kicked away. On the second leg we opted to check the car seat and that helped a lot!  He didn’t kick the seat in front of him nearly as much, but he did find other ways to get people’s attention.  He was watching How to Train Your Dragon on the iPAD and every time the dragon roared, my son roared louder.  It was so embarrassing!  But, no one said a word.

Once we got to our resort he was exhausted, because of course he didn’t nap one millisecond on the plane, and passed out on the floor.  I transitioned him to his pack and play and my husband and I started unpacking.  It was then I realized that one of his daily medications had burst and leaked out completely AND I forgot one of his daily supplements.  The next day I’d have to deal with that aggravation.  I told my husband I am never doing this again.  It wasn’t fair to my son, it wasn’t fair to me, it wasn’t fair to the passengers on the plane.  I  was done.  But then, wonderful things started happening.

In the morning my son woke up super happy.  He had a blast at the resort pool and rec room.  Once our family arrived at the resort the next day things got even better.  He was so excited to see his older cousins, grandparents, and aunt and uncle and they were excited to see him.  My sister-in-law had asked me prior to the trip what to tell her children about their cousin’s autism and I so appreciated that.  I could tell the boys understood their cousin had some differences, but it didn’t deter them from wanting to engage with him in the least.  They’d all play together then when my son drifted off into his own world, they just watched with such a keen interest.  His play was intriguing to them.  They gave him his space when he needed it, and engaged with him when he allowed it.

All of the adults made me feel at such ease.  Even when my son did something atypical, they offered to help.  They understood.  They were warm and caring.  The entire week wasn’t easy. There were some meltdowns.  There were some aggressions.  There were some challenges for sure, but it was not really any different than when we are at home.  The only difference is this time we were surrounded by our loving family.  They were getting a chance to catch a true glimpse at our son’s challenges as well as the things that make him special.

When it was time to leave I was pretty emotional. I had worked up in my head how difficult this trip could be and it was the exact opposite.  I think for my nephews, they got a first hand experience at being around a child with autism.  I think they’ll be great in dealing with peers with differences.  My in-laws got to experience the highs and the lows of our autism parenting journey and it was met with no judgement, just acceptance and compassion.  My son got to spend time with family.  People who unconditionally love him for exactly who he is.

The 2 flights home went remarkably well!  He slept for nearly the entire first leg and the second he quietly watched a movie.  That was great because it really helped to end the week on a high note.  He transitioned back to Eastern time in one night and went back to ABA therapy happily the very next day.

I learned a lot during this trip.  For one, I am guilty of creating a lot of thought distortions in my mind that simply aren’t true.  My son has autism.  Me worrying about what COULD go wrong isn’t going to change what could go wrong.  Me worrying about the fear of judgement isn’t going to create judgement.  The only thing I CAN do is plan and prepare and I did that.  My overwhelming desire to protect him and to protect myself have been denying us both the potential for wonderful experiences.

I am so glad we went on this trip.  I am not saying I am ready to jump back on a plane, but my son shouldn’t be kept from family and adventure because of my irrational fears.  I know a lot of parents who have special needs children are guilty of the same type of isolation I often create.  Yes, it’s easier to keep my son home in his own environment that I can control, but that’s not healthy for anyone.  We all need a variety of exposure and experiences to thrive.

I urge you, despite the hurdles parenting a child with autism involves, get out of your comfort zone.  Take your kids on adventures.  Make memories.  Yes, it will come with challenges.  But, it’s still worth it!

Life begins at the end of your comfort zone. – Neale Donald Walsh

My Autism Story

Amy shares her attempt at trying to explain what autism is like from her son’s perspective.

My name is Barclay.  I am almost four years old.  I have autism.  My mom wanted you to know what autism was like for me and even though I can’t tell you myself, she understands me well enough that I trust her to get it mostly right! Continue reading “My Autism Story”

Podcast 06: Planning for Your Special Needs Child’s Future, with Elder Law Attorney, Danielle Faller

Amy welcomes special guest, Elder Law Attorney, Danielle Faller of Hemness Law. Danielle gives information all parents of special needs children need to know.

Hemness Law

At Hemness Law, we limit ourselves to the practice of Elder Law. Elder Law is a unique area of legal practice which is defined by the type of clients we serve the elderly and persons with disabilities.

Special Needs Alliance

The Special Needs Alliance is a national organization comprised of attorneys committed to helping individuals with disabilities, their families and the professionals who serve them. Many of our members have loved ones with special needs; all of them work regularly with public benefits, guardianship/conservatorships, planning for disabilities and special education issues. They collaborate with advocates throughout the special needs community to improve quality of life for individuals with disabilities.

ABLE Account

ABLEnow accounts help individuals with disabilities save money to pay for qualified expenses, without being taxed on the earnings – and in most cases, without losing eligibility for certain means-tested benefit programs.

The Vestibular System: The Seventh Sense and Autism

As a child you were taught the 5 senses: sight, taste, smell, touch and hearing.  But did  you know there are actually 8?  The other 3 lesser known senses are the proprioceptive sense, vestibular sense and interoceptive sense.  (Click here to read my blog “The Interoceptive System:  The Eighth Sense and Autism)  In this blog we will discuss the vestibular sense and it’s role in those impacted with Autism Spectrum Disorder, as well as Sensory Processing Disorder, Attention Deficit Hyperactivity Disorder, language delays or other developmental disabilities. Continue reading “The Vestibular System: The Seventh Sense and Autism”

Podcast 05: I Wish I Knew Then

Amy shares strategies and approaches she has learned from parenting a child with ADHD and Autism that would greatly benefit parents of neurotypical children.

Interoception: The Eighth Sense and Autism

Amy explains what interoception is and how to help children who have autism better develop interoceptive awareness.

I had never heard the term, but I knew exactly what it was.  My 3 1/2 year old son has ADHD and ASD.  I recently jotted down on a piece of paper several things I was noticing in him.  Things that didn’t seem related, but at the same time seemed to have a connection.  Things like “never seems hungry, never seems thirsty, never seems sleepy, under responsive to painful stimuli, overly responsive to temperature of food, under responsive to physical touch, seems unable to recognize emotional changes in people,” and the list goes on.
Continue reading “Interoception: The Eighth Sense and Autism”