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I Want to Start a Movement: A Heroes’ Intervention

This blog kicks off the first of several stories I’ll share over the coming weeks on the many heroes among us. While these heroes may not wear capes, or possess super human strength; they’re making a positive, impactful difference on their own lives and those around them, and many show us through their stories — an incredible inner strength to overcome many challenges, an emotionally and mentally taxing situations. That’s what makes them true heroes!

Check out this first story shared by a parent of child who received our Early Intervention services:

My son Alex had been receiving Early Intervention services for about a year and a half. When Alex was nine months old he was diagnosed with a neurological condition called Hydrocephalus, and soon after had a shunt placed in his brain to allow excess cerebrospinal fluid (CSF) to drain freely down to his stomach. Following his surgery, Alex began to compensate with the way he used his arms and his legs; he started to favor his left side with all activities almost avoiding using his right. Alex also had a weak core and balance issues. He first started with occupational therapy (OT) services to address his upper body weakness and to assist with feeding techniques. As Alex continued working in OT, it was suggested that we incorporate physical therapy (PT) to assist with his core instability and balance. Soon after, he started with Speech-Language Pathology (SLP) services for his communication difficulties and language delays. Now, Alex is receiving SLP weekly and PT one time a month for a check in.

Like many people, the pandemic made things for Alex and our family more difficult. The in-person therapy we were receiving had to switch to a virtual platform and I as his mother became his in-person therapist. Over the summer, Alex was receiving three supportive services weekly through Early Intervention virtually, and it soon became too much to handle. The supportive staff from our services have always been very helpful and just a simple email or call away. They’ve made the process seamless despite its complexity.

Alex has made amazing progress over the last year and a half, and he and I have learned so much together! I am an occupational therapist myself, which may seem easier, however it was very difficult to be his therapist AND also his mom at the same time. Alex’s therapists helped me simplify my expectations and create a manageable plan to work on during the week with Alex, without getting overwhelmed by the schedule. Currently, our therapy is not like how it would be if we were face-to-face, or even in an outpatient setting, but I have grown to like it more. We now have the ability to be more creative and truly tailor therapies to Alex and his interests. Sometimes we play outside, with his cousins, or just in the living room with his big sister. Virtual therapy takes away any extra pressure of having someone in our home and eliminates any conflicting time constraints. Early Intervention is about parent interaction and participation just as much as it is about the child, and this is almost made easier in a collaborative discussion session than one where the child has to ‘perform.’

I learn something new each week when I speak with Colleen Veni, Alex’s speech therapist from KenCrest. She has made playing with Alex so much more fun and meaningful. The language I use towards Alex has allowed him to communicate better with me and vice versa. Colleen has taught me to simplify my language and directions towards Alex so he can hear simple words and associate them with how he is playing or his current situation. She also helps me work through his behavioral changes and temper tantrums as a 2-year old, which can be very strong and relentless. Colleen takes a full family approach and incorporates my daughter during the sessions and teaches us ways to improve her communication with Alex. I look forward to speaking with Colleen each week as she also helps me find a balance when I am feeling overwhelmed. Colleen has a direct but calm approach to Alex, myself, and my or my husband. I never feel judged, but always feel empowered and excited to play more when I am finished speaking with Colleen.

Before Alex worked with his PT, Deb Gates, he was unable to slide down a playground slide sitting upright, climb steps, crawl on all fours, and always fell walking downhill. Alex is now jumping with both feet off the ground, adjusting his sitting position from ‘W” with a simple reminder, he is climbing up and down stairs upright, and he can walk or run up and down hills without falling and remaining in control! These are only a few accomplishments he’s reached since May, 2020. Despite not ever meeting in person, Deb felt like she was always in our living room helping me find creative ways to get Alex to perform in therapy. He hated to participate in therapy at first and always found a way to escape when he saw me bring out the peanut ball. Deb helped me utilize our own furniture or toys to distract Alex from the therapy process and make it feel like just playing. She even gave me creative ways to get him comfortable in the pool to work on his trunk and core strength! These therapists turned a crummy situation around for us and gave my son an easier way to live. They provided me stability and strength during tough times and helped me realize that I am doing the best I can for Alex in my given situation. I appreciate their time and effort so much and our experience thus far has been positive and enlightening!

There are many heroes in this story:

· Alex’s mom who in her own words, overcame a “crummy situation,” head on, and made the best use of resources available to her and her son. She persevered, saw opportunity, and sought balance in an unsettling time;

· Alex’s sister, who cared enough to learn ways to communicate with her brother;

· Alex’s therapists, who respected his mom and his family, and provided the extraordinary resources and expertise needed to support this family when things were difficult; and adapted to virtual methods with no notice.

All heroes in their own right, let’s celebrate them! Who were the heroes in your life this week? Here’s an opportunity to recognize them.

Over the upcoming weeks, we will be soliciting stories that shine a spotlight on more heroes at KenCrest! Stay tuned for more details.



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Marian Baldini

Marian Baldini

Ms. Baldini is the CEO of KenCrest, a human services agency that provides services to children and the intellectually and developmentally disabled community.