The Collaboration
It is safe to say that I am neither a writer nor a blogger, so please excuse any of my errors as this is not my area of expertise...
However, I CAN safely say that I am the mother of a child with EXCEPTIONAL NEEDS. I can also say that I have struggled to accept this about my child- and then struggled further- with how to provide my exceptional child with the support he needs to become the very best version of himself.
My name is Jessica (Hassler) Barisano and I am the Founder of Collaborative Corner for Exceptional Children. I am happily married to a supportive husband, Jonathan Barisano, and we have two boys together, Jake and Trent. As their mother, I like to think that both of my boys are exceptional in their own way. Jake is exceptional at being a neuro-typical little boy who keeps me on my toes and provides my world with a lot of love and humor. Trent, my older son, has his own way of keeping me on my toes—sharing his own version of his love and humor. He is every bit of exceptional. He has extraordinary abilities AND exceptional needs.
Trent will be going into the 2nd grade this year. Although I feel as if we are more prepared than we have ever been, I still have that same “back to school with a special (or as I prefer, exceptional) needs” student anxiety. Will his new teacher understand his differences? Will he/she know how to effectively communicate with Trent and recognize his struggles? Will the school follow his complicated and detailed IEP that I’ve spent hours and days pouring over? Will the other children include him? Will kids make fun of him this year for his lack of social awareness? Just as any parent, the list of worries go on and on.
Trent’s primary diagnosis is Autism Spectrum Disorder. Trent also has combined-type ADHD as well as Growth Hormone Deficiency (GHD). GHD is a rare disorder characterized by the inadequate secretion of growth hormone (GH) from the anterior pituitary gland; which is a small gland located at the base of the brain that is responsible for the production of several hormones. For Trent, this is a genetic mutation which results in structural defects in his brain. Trent’s GHD is accompanied by a Rathke’s cleft cyst (a benign growth found on the pituitary gland in the brain). It’s worth noting that the pituitary gland is very important; as it takes messages from the brain and uses these messages to produce hormones that affect many parts of the body. This said, Trent’s pituitary gland works at an average of 30%. With Trent’s Autism and ADHD diagnosis, along with his genetic disorder, it seems that his list of other diagnoses grow each year. For every victory comes a defeat; and with every challenge comes the need to find a new solution.
I tell you this about my son because I know that many of you have- and are- experiencing very similar journeys. One diagnosis turns into multiple diagnoses… which spirals into a team of medical specialists, a packed schedule of therapies (such as Behavior, Speech, Occupational, Feeding and Physical therapy, etc.), and an uphill battle with the school system. It’s never-ending and it’s overwhelming!
As a parent, we want the basic simplicities of life for our children. We want them to feel loved, comfortable, and secure with themselves and their surroundings. We want them to experience happiness, acceptance, and the innocence of being a child. We want to protect them in any way we can to the best of our ability. We want to instill good values, kindness, and the eagerness to learn and grow… but what if you are chosen to be the parent of a child who requires more? Not just more- perhaps an overwhelming amount- of time, knowledge, patience, finances, and seemingly endless hoops to jump through that can eventually make it feel impossible to keep jumping?
With each diagnosis that came our way, I scrambled as a parent- to not only provide the basic simplicities of life to my child- but I spent a great deal of time searching the internet for explanations, treatments, services, resources…anything that I could find to help my child. What I found was a very confusing, stressful, time-consuming, and expensive world that is the special needs community.
I sat in appointment after appointment with my son and his team of doctors and specialists, and did my best to comprehend all of the information that they were giving me. I went to therapy sessions of all types and tried desperately to understand what these therapists were doing with my child (and why). I left many doctor’s appointments and therapy sessions feeling defeated, uneducated, and scared.
I can’t tell you exactly when it happened; but at some point, I stopped being scared. I stopped being intimidated by all the doctors and specialists. I started pouring my time into learning every aspect of my child’s abilities AND disabilities, as well as his “treatments.” The more time I spent in doing this, the more I thought, “WHY IS THIS SO HARD?”. Why can I Google “best parks in Central Florida” and find endless resources, but my search came up empty when I typed in “sensory-friendly park for children with physical restrictions”? Why could I Google “how to prepare my child for Kindergarten” but I couldn’t find anything on “how to prepare my special needs child for Kindergarten”? In all of my searching, I bounced from resource to resource- Facebook page to Facebook page and from one support group to the next- to find the answers to seemingly simple questions for the needs for my exceptional child.
After years of this struggle, navigating our family through the ins and outs of this “exceptional” world, and now finally arming ourselves with (what we feel like) the best team of doctors and specialists for Trent, Collaborative Corner for Exceptional Children was formed.
My goal for Collaborative Corner was and is simple: encourage the community to accept any child as an EXCEPTIONAL child with ABILITIES and provide one central hub of information for parents to visit to get the necessary information they need throughout their journey with their exceptional child(ren).
At Collaborative Corner, we have gathered a team of Central Florida’s most experienced and knowledgeable professionals within the exceptional needs community. What we refer to as “The Panel” are industry professionals that are not only the best in their field but have the desire to help children and families outside of their daily jobs. They want to DO MORE. They want to be there for you, for me, and for our children. Each Panel member has the kindness and knowledge to help us all throughout the journey with our exceptional children.
As the new school year approaches, I encourage you to reach out to our Panel at Collaborative Corner to help ease the transition into the new school year.
If you are a family that has a child that isn’t of school age, I encourage you to reach out to our Panel for information that is specific to your child’s diagnosis, and for resources and tools that could be helpful in your daily lives.
Additionally, if you are the family of a newly diagnosed child… if you are feeling overwhelmed and don’t know where to start- you are in the right place. We have a team of parent advocates who have been in your shoes, who can sympathize with exactly what you are going through and can provide you with an abundance of resources.
I myself have relied on this “Panel”- the resources, doctors, and organizations that Collaborative Corner offers- too many times to count. They have shown me that my child is more than a diagnosis. He has both abilities and disabilities. He is not only “special,” but he is exceptional. They have taught me that, with the right resources and knowledge, he can experience those simplicities of childhood that I had imagined while also improving his quality of his life.
I am thrilled to bring Collaborative Corner for Exceptional Children to life! I hope that we can offer you a community of acceptance and knowledge. I am eager to share the expertise of our Panel, our partners and resources. Most importantly, I am excited to interact with other exceptional families and grow with you all throughout this journey. We are in this together.
Jessica Barisano - IEP & Parent Advocate, Parent of an Exceptional Child
Founder of Collaborative Corner for Exceptional Children
jessica@collaborativecorner.org