By Kristi | Published | No Comments
Recently I attended my nieces wedding. Like most it was a joyous occasion filled with love, witnessed by family and friends. As I sat there watching them exchanging their vows, promising to love, cherish and support one another from that day forward it reminded me of another vow. The one I made the day I found out my son had autism. The vow that I would do whatever necessary to help Jonathan live his best life.
I began thinking about the many ways autism resembles a marriage. There are often unknowns for newlyweds. Adjusting to changes in lifestyles, habits, opinions, personalities and the like. When my son was diagnosed with autism we entered uncharted territory with mixed feelings. Determined to do our best as parents yet unsure of the path forward. As I reflect on the vows I recited with my husband 37 years ago little did I realize at the time the relevance they would have raising my autistic son.
I take thee autism, to have and to hold, from this day forward, for better or worse in sickness and in health. For richer or poorer to love and cherish till death do us part.
The moment I first laid eyes on Jonathan, from that day forward my heart was captured in love. At that time unbeknownst to me autism was a part of my son to have and hold. It changed some aspects but never the love, hopes or dreams I had for him. A love that has continued to grow stronger year after year.
For better or worse every experience has provided valuable insights. Yes some were very difficult and at times painful, still others garnered wisdom and knowledge that carried us in times of joy, frustration and sorrow. I believe they have made me a better parent and human being every step of the way. Where I’ve encountered the worst are the times when I’m unable to understand my son’s wants or needs due to his limited verbal abilities. For better or worse each experience has made me a better parent, teacher and individual.
In sickness and health Jonathan continues to be very blessed with good health and minimal illness. There are often health issues that accompany autism. Sensory issues, gastrointestinal problems, epilepsy, sleep disturbances, feeding issues, mental health disorders as well as immune and metabolic issues, to name a few. While Jonathan’s experienced some, they have been short lived and manageable. Overall he has been very fortunate with few health concerns. Sadly, for many on the spectrum this is not the case.
For richer or poorer is relative. Yes, financial is what often comes to mind. Raising a child with autism can be quite costly. Access to programs and services are scarce and under funded. Waitlists once approved are years, even decades depending on where you live. Most families pay out of pocket and fight insurance companies for coverage of minimal services. However the flip side is how much my son has enriched not only my life and our family, but so many lives he’s touched along the way. This is often overlooked as a source of wealth and as far as I’m concerned it’s priceless.
To love and cherish until death do us part. This part of my vow is the hardest to come to terms with and accept. For any parent the thought of one day leaving this world and our children is devastating. For me the best way to love and cherish means leaving them as independent as possible and prepared for that day. To do so in crisis would be devastating, especially to Jonathan. Equally his sisters who would have the responsibility after my husband and I are no longer able or alive. So three years of research, inquiries and investigation led to finding Jonathan his new residential home. So far he seems quite happy and adapting well. He’s an adult, almost 30 years old and it’s time for him to live his best life. They say that which does not kill us makes us stronger.This was my test and while difficult it did not kill me. Just made my heart ache but that pain is subsiding seeing him flourish.
For better or worse, for richer or poorer, in sickness and health, to love and cherish that has been my life with autism. Reminiscent of wedding vows and that first dance together. I think of the song by the Carpenters “We’ve Only Just Begun”-a kiss for luck and we’re on our way.
And yes we’ve just begun.
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