• Janele Hoerner

How we Helped our Extended Family Accept our Son’s Autism diagnosis

Coming to terms with an Autism diagnosis of a child on purely a parental level can be indescribable. There is an entire spectrum of emotions that range from inconsolable sadness to relief that the answer has finally been found. It is a uniquely personal and sometimes misunderstood human process of emotions.

I am told by various individuals that some people can pass through the same stages of grief from the loss of a child, when a special needs diagnosis is discovered. I personally was one of the “odd” people that first felt relief in the initial diagnosis of High Functioning Autism in my son, though I quickly realized that other emotions were just over the horizon. On one hand I indeed felt sadness, but after two years of trying to understand why my son was not acting like every other boy his age and blaming myself, relief was the only emotion that felt real.

Even though my first thoughts to the child phycharists were in fact, “Thank you for finally giving us some answers”, after leaving her office that day a wave of emotions hit me that I was not prepared to feel. These were relief, sadness, hopelessness, anger, disappointment, loss, enlightenment, understanding, and the list goes on.

Although most of those emotions do not seem to go together in any reality that I have ever visited before my son was born. I can relate that one emotion was not even enough to sometimes describe how I was feeling, though that process took some time. Most of my mind changed the moment I came to terms and accepted that my son was an atypical child whom had High Functioning Autism.

I believe most parents of a child with Autism know where I am coming from when I describe my full array of feelings, following such a life changing moment such as a child’s diagnosis. I was only 24 when I was given the big news of my son who at the time was a little over three years of age and although we were prepared for a diagnosis when the words were actually spoken in reference to our child, we were not as prepared as we had thought. I remember sitting in the parking lot of the appointment with my two little ones buckled in the backseat just crying my eyes out on the phone to my husband. I tried my best to find the words to explain to him that a doctor had finally given us an answer as to what was going on with our little boy and yet all I could do was cry.

Though over time the tears subsided and we rose above the diagnosis to view our child as a gift, rather than a hindrance to the life we wished to live, but I will admit, truly it took time. In a period of extreme uncertainty in our own immediate family’s life which included myself, my husband, our three year old son, an 11 month old baby, and a brand new just-announced third child on the way, we were overwhelmed with all of our tasks at hand yet we had no choice, but to push onward.

On the contrary to our process of growth within ourselves we had another task in hand, as we had to relate the information that we had just newly received and processed, about our eldest son, to our extended family members. Although I can describe that as a caregiver we may have felt as if we tackled the worst of our initial impact on our own life there is nothing that prepares a person for relaying the diagnosis to the extended members of an individual family. I would love to state that everyone will be supportive and on board with your decision from the beginning, but from our own experience I feel each and every individual must be prepared to watch each member of your family separately process the diagnosis in their own way and time.

Each person will and is entitled to their own process of emotions given how close they are to the said child and the impact of the initial emotions can be a rollercoaster ride in itself. For myself and my husband we wanted to find the best way to relay the information in concrete and relatively unarguable terms to fully explain the why’s and how’s to our family members in the calmest setting possible. Though this of course was a challenging thought process, yet after a few nights of careful consideration we came to the conclusion that an informational written explanation that we would read aloud would be the best way to present the information.

With so many emotions riding on our shoulders emotions cut through the room like a knife as we invited our families to sit down and begin the briefing process. We asked that everyone keep their questions until the end of what became- our speech. We began by presenting everyone with the diagnoses that we were given, why it was given, and the explanations behind what Autism Spectrum disorder truly is.

We went on to explain why and how we ourselves came to accept a diagnosis on such a young child and assured everyone that we were not blindly led to this conclusion, but had seen multiple doctors all stating the same interpretations. We laid out what our plans were to do with our special needs child in his daily and monthly care and we summed up our time by reading a plea that we wrote which asked each person to accept our decision that we had arrived at as our son’s parents. We asked our families to help us with our future rather than to hinder us by questioning our every move.

As much as I wish I could state that I was prepared for the varied responses ranging from anger to tears to silence, I honestly was not. Though I am extremely thankful that I wrote out that informational sheet for each family member to hold on to because that sheet is what, I believe, held back most of the inquisitive remarks over the years from some, but not all of the members of our families. With that tiny three page paper that they had the ability to place into their files, they possessed something concrete in order to reference every time a question crept into their minds.

Now four years after that initial meeting I can state that most of the questions as to why our son has what he does are out of the way and we have all moved on to help this child function at his daily best with the life that we have been gifted with, as his parents. A life I never dreamed of having, but a life that I would never want to live one day without. I only have one wish for all of the families beginning the path of loving their own unique gift of a child with autism spectrum disorder and that is that you may be led to the life that you were meant to possess by experiencing the largest growth in yourself. A life that may in fact bring you to your knees, but a life none the less that is helping an extraordinary child feel loved in their own unique ways of processing such a complex emotion. A love that leads you to grow into the feelings of happiness, by making an amazing impact on the world. Both you and your child hold the possibility to effect change by your loving example which all begins with learning to abandon your own selfishness for you child.

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