I was reminded today of an experience of providing Technical Assistance to an agency for a gentleman (I will call Dennis) with Autism who at the time was my age, 50 years old. I was at his house for a planning meeting with his Mom, who was then 75 years old. She told me of her love and special times with her son, going out to dinners, fairs and Casinos in particularly. I remember thinking that the age difference between Dennis and his mother was the same as between Michael and me. I thought to myself, “I got this!” I’ll be taking Michael to all his favorite places well into my 80s!!! Fast forward 10+ years, my “I got this” statement isn’t so confident.
My thought now is about health, exercise, hope, appreciation and pacing myself. I want to be here for a long time to enjoy all of my family and have the physical and mental capacity to do so. I also want to share my story with other “Mom’s and Dad’s” on their journey raising a child across the lifespan who experience autism and an intellectual disability. It’s not a race! It is an experience of patience, hope and faith on our part as parents/guardians and a lifelong opportunity for our son’s and daughter’s to be accepted and included in their community.
Over these past ten years, Michael has experienced several medical challenges, increased seizures, a bleeding ulcer with a ten-day hospitalization, followed by a perforated bowel and emergency surgery that resulted in a three day stay in ICU with an additional nine-day hospital stay. Later an EEG telemetry resulting in a recommendation to implant a Vagus Nerve Stimulator. The VNS was implanted in his chest to manage his intractable seizures with quarterly monitoring and adjustments.
Next, the last 10 years of his living situation! Unfortunately, it has continued to change and be disrupted; a Companion Home, back home to live with me, then a Supported Living Agency into a house with a roommate. Three houses later, with a new Supported Living Agency, Michael is living as the sole occupant with 24/7 support and hours of Autism Training that I have provided, it is working out much better.
In the meantime, my parents (Michael’s Grandparents) have passed away, my husband and I moved, twice! I became a grandmother to three beautiful children, though my daughter experienced serious health conditions related to her pregnancies and autoimmune conditions. I fought off foot pain right up until I had foot surgery, a biopsy and the rattle of new prescriptions in my bathroom drawer, I think I’m good for a couple of months. Then just to mix it up a bit, a couple of visits in front of a Clark County Superior Court Judge over Guardianship.
I need to remind myself of the whole journey that Michael and my family has been on, it’s been exceptional. It has been a process of dedication, finances, heartbreak, patience, joy, advocacy, knowledge, hope, faith and a whole lot of work. Sometimes when I want to be hard on myself for not getting Michael’s visuals updated or the fence built in his front yard. It is in these times that I will try to remind myself of the amount of work and perseverance it has taken to get to this point. I need to be kinder to myself, I am only one person, trying to do the best I can with what I have learned as a parent to an exceptional young man with unique health and neurological challenges.
To be quite honest, I’m getting there! I still need to learn a lot, I need to take care of myself, pace myself and be reflective of what has been accomplished and to enjoy the life I have ahead of me. My hope is that other families will realize their skills, talents and commitment and that they are exceptional people doing extraordinary things for their son’s and daughter’s with autism and intellectual disabilities.