Following the lyrics of a song from my favorite Musical "Let's
start at the very beginning, it’s a very good place to start" I am about
to embark on this journey with all of you - step by step, layer by layer I will
share our story with those who wish to read about it. I can't promise that the posts will reflect a
full play by play, but what I can promise is they will most certainly reflect
on all we have been through, opening up about the tough times and successes all
the while sharing the details of what we learned and how we made it this
far. I will intertwine past and present
where it makes sense and provide updates on our younger son's journey that has
truly just begun to unfold. Whether the
posts make you smile, laugh, shake your head or even cry, I hope you find
yourself learning something or growing somehow from our journey.
I spent most of my mid to late 30's becoming intimately familiar with
Autism Spectrum Disorder(ASD) and Sensory Processing Disorder(SPD). Not out of curiosity - out of necessity. We had two options, place our son on medication and cross our fingers that it will
do the trick to "mask" the disorder that sat within him OR meet it
head on by doing everything we could to provide my first born with the tools
necessary to allow him an opportunity to live the best life he could to his
full potential, whatever that was meant to be.
We chose option 2 and will never regret one moment spent researching
websites, talking to professionals, learning the ABC's of ABA going to IEP
meetings nor spending gobs of money on private OT, behavioral and social skill
classes for our son who now has the tools in place to cope with much of his
disorder and outwardly shows himself as sarcastic, happy, respectful,
empathetic and sensitive 10 year old or Pre-Teen as he calls it.
Our investigation, research, testing, evaluations, persistence,
resilience coupled with the support and guidance from the village of educated
specialists and supporters led us to his diagnosis of ASD, SPD & Borderline
Intellectual functioning and just for good measure anxiety came along for the ride. How does a
child diagnosed with these disabilities/disorders, someone who required a
multitude of special education services from toddler through 3rd grade, end up
shifting off an IEP and onto a 504 plan? In 3rd grade he had become a peer in the inclusion
classroom and in 4th moved into the non-inclusion classroom, with the above grade level
and GT kids and most amazing to us bringing home report cards that show
straight A's in everything but PE. Should you
choose to come along for the ride, I will do my best to take you through the
raw details within each stage of the timeline below.
Timeline estimation:
23 months old
- Infants and Toddlers of Baltimore County evaluation complete
- Speech services started through this program
28 months old
- behavioral psychologist evaluation complete
30 months old
- OT services begin for SPD, gross and fine motor skill delays and the inability to self-regulate
3 years old
- Shadow hired as 1:1 support during preschool 3 of 5 days
4 years old
- Tri-County Services of Ventura County evaluation conducted
- Diagnosed with Borderline Intellectual Function, Autism Spectrum Disorder and Sensory Processing Disorder
- Based on diagnosis, ABA services were recommended and paid for through the state but provided by an ABA Organization
- Entered a Social Skills program led by behavioral psychologist
4.5 years old
- Oak Park School educators met with us and our dream team to conduct IEP evaluation for potential qualification and goal planning
- IEP created and implemented
5.5 years old
- Kindergarten at Ilchester Elementary school begins with IEP intact including the following services:
- Speech
- inclusion classroom
- Shared para-educator able to take him out of class for a walk when he couldn't self-regulate, process or say how he was feeling
6.5 years old
- First Grade - IEP intact
- Speech continues
- inclusion classroom
- Shared para-educator able to take him out of class for a walk when he couldn't self-regulate, process or say how he was feeling
7.5 years old
- Second Grade - IEP intact
- Speech continues
- inclusion classroom
- Shared para-educator able to take him out of class for a walk when he couldn't self-regulate, process or say how he was feeling
- Psych services added to deal with anxiety
8.5 years old
- Third Grade - IEP dismantled
- Transitioned onto a 504
- Speech discontinued
- Psych services continue
- Inclusion classroom - this time as a peer
- No para-educator as it is time to let the bird fly free
9.5 years old
- Fourth Grade - 504 continues
- Peer to Peer class placement
- GT Math placement
- Psych services available as needed
10.5 years old
- Fifth Grade - 504 continues
- Peer to Peer class placement
- GT Math placement
- Psych services available as needed
My husband loves that my best kept secret is out, however said I
shouldn't write about him :) Good thing I didn't agree because this part of us
needs to be shared. People often ask me
how our marriage has survived the trials and tribulations life has thrown our
way since our oldest was 9 months old and my consistent response states that
our foundation is strong - built on friendship, trust and respect. Times haven't always been easy and we
continue to deal with many struggles that come along with both our children's
disabilities and of course our own idiosyncrasies, yet we choose to forge ahead
together, learning and growing with every success and mishap all leading us to
become more understanding and patient with one another as we move through this
bumpy journey together. Of course, a
sprinkling of Sarcasm and laughter always help us make it through when
overwhelmed by a situation and unsure what to do next.
It is difficult for those that didn't know us at the start of this
journey to understand the magnitude of this transformation nor the reality that
while he doesn't "look or act" like he has autism he exerts a lot of
his energy each day making sure that no one can see what still lurks
inside. While he has come a long way,
Autism isn't something that will ever disappear completely and just when we let
our guard down some of the behaviors, feelings and reactions rear their ugly
head and we are reminded once again that this is his and our reality. Sure, there are times when I ask why us, why
him but the truth of the matter is he is one of the most amazing individuals I have
ever encountered and not a day goes by that I don't learn something by being
his mom and a part of this journey. Love
shows no boundaries and love in its purest form isn't always easy but it is
always unconditional.
To an acquaintance or a stranger, he looks like a happy, typically
developing thriving 5th grader and to us he is the true meaning of perseverance
and resilience. If you choose to follow
my journey, strap on your helmet because I am about to take you on a bumpy
ride.
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