If we allow a medical diagnosis or disability to define a child, we have lost before we even get off the starting block. That pretty much sums up the foundation in which I began my journey2bloom. This statement continues to ring true for my 1st born son’s learning differences and keeps me grounded in what is important as I navigate our 2nd son's unique learning differences. In both situations, had I let their diagnosis lead me, neither would be where they are today.
Over
the years I spent a lot of time writing about my almost 14 year old - sort of
makes sense - since I spent 2.5 of his first 4 years of life navigating these
unchartered waters, asking questions, sometimes getting answers, sometimes a
run around, sometimes the evil eye and eventually finding experts that helped
me navigate the path forward. He wasn't
hitting milestone's as a "typically" developing child should and as first-time
parents we shared our concerns with our wonderful pediatrician. She gave us literature that introduced us to
what early intervention services was all about and gave us hope.
Aligning
with those that knew more than me to figure out what was holding him back from
developing, socializing, learning etc. was the best first decision I made on
this journey2bloom. If I had listened to what some other experts, family and
even strangers had told me I should or shouldn’t do to help us help him, I
would be telling a very different story and our paths may never have
crossed. Thankfully my intuition,
resilience and perhaps “stubbornness - don’t tell me my child can’t have the
best of everything offered to him thinking” helped me stay grounded in good
intentions and afforded me the strength and courage to continue navigating one way streets, dead ends and even u-turns that ultimately led to my village of advocates, incredible support team
and foundation centered around the well-being of our children always being front
and center.
Defined by the choice to take the road less
traveled led me start a blog about early intervention aka our journey2bloom.
The decision - almost 10 years ago - to not take the words and guidance of a psychiatrist as "fact" and instead embark on a journey of seeking to understand what triggered my oldest son to exude behavior aligned with her findings, set me on a path that would become my purpose and passion. Fast forward to 2012, we now have 2 boys. By age 3, our oldest was entrenched in social skills classes, ABA Therapy, Speech and any other early intervention services we could find that would help put the pieces together. Our, youngest, the one we would call little sunshine was just starting to show signs of delays. Our happy go lucky, silly 2 year old who was always smiling, appropriately playing, interacting with others - essentially hitting every milestone up to that point - began showing signs of slowing progress. When the delays began to surface, I thought how could this be happening again? How could our kids be dealt hands that would make an already difficult world more difficult? I wanted to crawl in a hole and not come out and yet others kept telling me, "you only get what you can handle" followed by "you are one of the strongest people I know" I wasn't feeling strong, nor secure, nor able to wrap my head around what was about to take hold as the next phase in our journey2bloom.
For sake of this post, I will share some "highlights" and reserve the right to delve deeper into each of the subgroups at some point over the next several months to a year.
Our younger son's first early intervention experience was through infants and toddlers for Speech - during which time the SPL (Speech and Language Pathologist) observed what appeared to be a delay in fine motor skills and recommended he be assessed for OT (occupational therapy). Over the next 8 years, after speech, OT, Physical Therapy, Adaptive PE, and starting off kindergarten with an IEP classified as DD (Developmental Delay) because no one could quite figure out why he had so many delays nor where his learning differences were coming from the pieces of the puzzle finally began coming into focus. There were more questions than answers and varying diagnosis along the way.
While we were surrounded by those who had become partners in conversation and advocates throughout the years of working together for our older son, there were also some educators who "took short cuts". Subsequently our younger son suffered because he wasn't provided full access to the curriculum needed for him to learn at the best of his ability during the pre-school, pre-k and early years of elementary school. We continue to fill in the early learning gaps impacted by those choices.
This is where the choices we make define us statement comes back into play. Being an empath, something felt off to me for quite some time, but I couldn't put my finger on it nor when I asked questions, was I getting any straight answers about what I was questioning. During the early years with our youngest son, instead of answers I was told, "he is doing fine, doing well". Finally, small things began to surface that gave me a glimpse into what I had been feeling. Small things - such as - being sent home a paper with a smiley face when our son was telling us he was crying in school that day. After choosing to gain more intimate knowledge of how advocacy and the school system intertwined, learning more about special education law when it came to the rights I had as a parent to continue requesting specific data until it was shared, I finally started getting somewhere with my younger son. Asking for documented examples of progress this specific special educator stated our son was making on the IEP goals led to uncovering gaps in learning, missing documentation and inaccurate goal setting. The journey gets more complicated as time goes on. ADHD, Anxiety and Absence Seizures, coupled with a fairly unique neuro-psych profile all play a role in his learning differences. I will pause here for today....more to come.
In part due to the
above experiences I am now certain that when parents truly know their rights,
and how to use their voice, kids thrive. My hope is to serve the parents
and caregivers by offering a forum to collaborate and learn how to use their
voice to help their kids. Through conversations with parents, and even
educators, I have found there are many people who don't know what they don't
know about how to be an active part of the IEP or 504 team and so, instead, they
sit in meetings and let the decisions be made for them and their child. I am on
a focused mission is to change that so everyone moves forward together for the
sake of the child. If you or someone you know would like to come along
on this journey, please reach out! Journey2bloom@gmail.com
#journey2bloom
#inspireresilience
#ittakesavillage
#movingmountains
Find out more about how I can help here -> https://journey2bloom.wixsite.com/mysite
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