Within our Charlotte sy Dimby community, we have made the most beautiful encounters. Meeting mothers and their children with special needs has been particularly inspiring.
In honor of World Autism Awareness Day we wish to show our compassion to all the ‘heroes of the shadow’ who strive to make childhood beautiful in spite of the challenges of Autism.
By sharing the journey of Jake Hartman and his family, we aim to offer a better understanding of how Autism’ symptoms and consequences affect family life as well as keys on how to show support to those who live with it.
The Hartman Family lives in Sunny Florida. Well suited to the Sunshine state, they love bright colors, warm weather and time by the beach. Always smiling and spreading joy whatever the circumstances, they are rays of sunshine themselves.
Jill and her husband have 3 children. Jake, the eldest child was diagnosed with Autism at the age of 2.5 and is now 19. Jack, born on Autism Awareness Day is turning 9 today and Jenna is 6. We must also mention their beloved poodles : Abby and Isabelle.
Charlotte sy Dimby : As a start, what is Autism exactly? An illness, a disability, a form of special needs?
Jill Hartman : To quote Dr Stephen Shore “If you have met one child with Autism you have met one child with Autism.” It’s a spectrum and each case is unique. This makes it very tricky to diagnose.
It’s a lifelong neurodevelopmental difference, basically an unusual brain wiring which affects so many aspects of life : social interactions, communication, behavior.... Basically almost EVERYTHING!
Charlotte sy Dimby : To help us better understand, could you please share about how it first affected Jake?
Jill Hartman : In the beginning, we knew something was not right with Jake. He was a very picky and slow eater, a late walker. When he would walk, he swayed his arms, and walked on his tippy toes. He did not use words and could not understand others. He was often overwhelmed by being around other children and very sensitive to noise.
As a young toddler, Jake had a big regression and became very ill. All the things he once liked, he no longer had any interest in. He stopped going in his swing, would not touch a trike or bike, and to this day will not ride a two -wheel bike.
His sensory system was so confused. He was plagued with terrible tummy and sleep issues. Throughout our journey he has dealt with anxiety and OCD. He would have the usual stereotypical self-stimulating behaviours, verbal stims, and would often get “stuck” on specific toys.
Today Jake still has symptoms, still loves spending time in his room and staying at home but things have greatly improved.
Charlotte sy Dimby : How did you react when receiving the diagnosis?
Jill Hartman : I was very numb but it did not hold any power over me, because I was finally understanding what was troubling my sweet boy. I saw Jake’s diagnosis as a starting point. ALL the guessing games were over. I finally knew “IF THIS...THEN”. With a diagnosis, I could learn how best to treat and help Jake. I vividly remember receiving Jake’s diagnosis letter. At that moment, I knew I could go forward.
I was not willing to allow the label to define Jake but it was useful in pointing me in the right direction for help.
Charlotte sy Dimby : What was your approach to Jake’s Autism treatment?
Jill Hartman : Once again, there is not ‘a one fits all way’ treatment. We took a multifaceted approach to Jake’s Autism and decided to treat him Bio-medically. To sum it up in three words : DIET, SUPPLEMENTS, and THERAPY. When you decide how you want to treat your child, consistency is so important.
With detailed allergy testing and with the help of a doctor, we began to remove triggers from Jake’s diet and living surroundings. We had amazing success and improvement with the use of a Hyperbaric Chamber which involves breathing pure oxygen in a pressurized environment.
Therapy also played a big part in Jake’s treatment. We did so many : social skills therapy, art therapy, equine therapy, oral motor and speech therapy, sensory integration therapy, listening therapy, and ocular motor therapy for his eyes.
We also established regular visits with an Osteopathic Physician and Acupuncturist, for whole body health and had a service dog who was very special to us.
More recently Jake began Karate. We were very fortunate to have found a DOJO with a Sensei that did not treat Jake any differently from the other kids.
Every time Jake hit a plateau and had not shown any improvement, we tried a new or different type of therapy. It’s truly an ongoing journey.
Charlotte sy Dimby : When talking of Jake’s treatment, you use the term ‘we’. We are guessing the entire family was involved. How did you all adapt?
Jill Hartman : When you have a child living with Autism, everyone in the family is living with Autism. The doctors often referred to us as “Autism WARRIORS”. Families devote their lives to helping their child with Autism get better, it takes a very special level of dedication to follow such a difficult and challenging path.
Socially, we first avoided activities and playdates, eliminated travel, walked on eggshells to avoid causing meltdowns, and self-isolated because it was just so difficult to be around others. We were all so miserable to see how much he and all of us were missing out on.
But once having the diagnosis in hand, we took action as a family to improve Jake’s situation and that of us all. “What blesses one, blesses all”. As we adapted as a family, we benefitted as a family.
Our whole family follows a gluten free, casein free diet. We also went one step further and eliminated grains. We began using non- toxic cleaners. We purchased a special water filter, air filters, installed hardwood floors, and converted our pool to a salt-water-based chlorine system. We also made sure we had non-toxic, organic bedding.
Every little improvement can help make a difference. If a small change could be made, we implemented it. All this started to add up allowing us to once more enjoy family life!
Charlotte sy Dimby : Indeed in spite of the challenges, you manage to celebrate childhood, life goes on! What guides you?
Jill Hartman : Making all of my children happy guides me! I dedicate much of my time to Jake but also make sure Jack and Jenna feel loved and included. We love to celebrate as a family, be it Valentine’s Day, Saint Patrick’s Day, the new launches of our favourite brands or the arrival of Spring, we never miss an opportunity to have fun. We love to decorate the house, dress up and take fun photos! The beach is also our happy place!
In spite of our strict protocol, we enjoy making new experiences! Jenna is part of the Charlotte and Burlington Pen Pal adventure and both Jack and Jenna have just started acting school which I am so proud of!
Charlotte sy Dimby : How do you manage to take care of yourself? You call yourself a warrior and you are!
Jill Hartman : Taking care of myself has been a long struggle. In the beginning, I was exhausted, nervous, scared, puzzled, and worried. Jake looked perfectly normal, so people thought Jake was perfectly normal. When I spoke with friends and family about it, I was given the typical responses, “he is a boy”, “boys are just that way”, “give him time”, “his words will come”, “he is just doing that to get a response”, “he is just acting out”. The responses were endless, and it took me some time to get the answers I needed. I never gave up trying to understand Jake and find new treatments but did lose myself in the process.
When I knew I was on the right path with Jake, I was better able to look and feel my best. I came to learn how essential respite is. Care for the caregiver is so important. I now make sure to do things for myself : taking morning walks with my dogs, shopping, movies, lunches out, and tennis. I also have a standing appointment for acupuncture every two weeks.
After several years on our treatment protocol, I was able to get involved in the Autism community and donate my time to helping other parents. Treating Autism is incredibly expensive and so much is out of pocket expense. It felt truly important to give back and help make a difference.
Charlotte sy Dimby : What would your message to families of children living with Autism be?
Jill Hartman : “Where there is a will, there is a way!” Things can get better! It does take work, on behalf of the parent, child and family as a whole. It all starts with one small step but soon enough all those very small steps will start adding up.
If you see one small improvement, CELEBRATE IT, keep going, and continue adding more small steps. Never take any achievement for granted. CELEBRATE them all. It can be your child saying one word for the very first time, opening a gift, eating a new food, or it could be as big as earning a Black Belt. Progress is so important to keep you going on your journey. That’s the biggest lesson we have learnt!
We have also always been very open and honest about our journey with Autism. By talking about Autism, you can help others to have a better understanding of how living with it and what adapting to a world that is not living with Autism implies.
I also encourage families to follow @tacanow which provides guidance and support.
Charlotte sy Dimby : This leads to a final question? How to support a family like yours with a special child?
Jill Hartman : Supporting families with Autism is so important because it is so hard to ask for help.
Autism is so complex and treatment protocols are such a personal family choice. Respect and understanding are the best things you can give to a parent of a child with Autism.
Taking time to lend an ear, just to listen without judgement, to be there is a great gift. Parents and caregivers of children with Autism work so hard day in and day out. Merely acknowledging is support in itself.
Adapting to the family’s lifestyle and protocol : for example grabbing the diet specific snacks for them, their favourite shows taped and avoiding what could scare the child helps too.
It does not have to be a big gesture, it could also be offering to run an errand or pick up something from the store when the family is overwhelmed.
I never wanted to be pitied as a caregiver of a child with Autism. I just wanted to be heard, and wanted my sweet boy to be understood. Accepted in his difference and included just the way he is! Small little acts of kindness make such a difference.
If you have questions, please feel free to comment below or to contact Jillian on Instagram or by email at firstname.lastname@example.org