As a father of a soon to be 17 year old son with severe autism disorder symptoms and profound developmental delays I understand fully when parents discuss those challenges on line.  (He is also a very solid 6'1" and still growing). I do not mock other parents and accuse them of engaging in self pity, or of demonizing their children,  as do many in the Neurodiversity movement including the "Thinking Persons" at the TPGA.  

I understand fully what it means to try and help your adolescent son when he is hitting himself in the head in the middle of the night or when at a younger age he slipped out of the house unnoticed, crossing full parking lots and a busy main street on a busy Saturday afternoon.  I understand and I communicate these challenges so that people in the world at large are not misled by the media that adores the high functioning success stories or the DSM5 teams that are now redefining the most severe intellectually disabled autistics out of the spectrum as the only co-morbid condition group specifically and expressly targeted for exclusion.

I communicate these realities to be honest to my son and present honestly the challenges he faces even as those with his symptoms are being abandoned by the inglorious drafters of the DSM5 autism spectrum disorder.  To those who think otherwise I hope  you have a good day.  

When I feel the stresses of caring for a severely autistic, profoundly developmentally delayed son, as happens on occasion, I do not seek support on the internet.  I find my joy in my son, not in his disorder but in him, the pure joy in the many good times and even the joy that comes from trying to help some one as best you can overcome the severe challenges they face.  

I also, like any human being, find joy in diversions, including music.  Some musicians have the ability to lift any spirit, to assist in facing any challenge.  One that I have always enjoyed since the days when she was with us and blessing us with her talent and her incredible heart and soul was ... and still is ... in her music ... Janis Joplin.  If you're feeling a bit worn down try a bit of Janis.  I don't know for sure if it will work for you but it sure works for me. 

Today an old fear returned and grabbed me firmly.  It was the greatest fear I have known in my life.  And it came back with full force. 

I have written a couple of times on this site about the time several years ago, when Conor was much younger, and he left the house unnoticed while he was in my sole  care.  When I realized he was missing I ran around the house, down to the Saint John River which was close to our home, across a nearby busy parking lot and then back home before calling 911. The 911 operator told me he had been taken into a nearby convenience store by a good Frederictonian who had stopped his vehicle to remove Conor from traffic to safety.  The man left as soon as I arrived and identified myself and he new Conor was safe. He left without waiting to be thanked. 

Today, years later, I was again the adult in charge and I was again distracted by a business call.  When the call was ended and I looked for Conor I realized he had again left unnoticed.  I ran outdoors around our house calling his name without spotting him,  then ran back upstairs to speak with his brother who had been busy in his room and hadn't heard him go out. When I ran down the stairs Conor stepped into the house and I was again relieved.  I believe he had just been in the back yard starting to leave via a shortcut to one or our regular walking paths and heard me calling for him. 

Conor is no longer a small child physically but he has serious cognitive challenges and severe autism disorder. When we go on our almost daily walks I will often let him walk ahead of me, within eyesight, to let him make the decisions about the direction to go to find our way home.  I have done so in the hope that if he does leave unnoticed he will know his way back which I believe he does. For that reason I  was not as fearful, or not quite as fearful, when  I couldn't find him quickly today.  I admit it though.  I was scared again.  And thankful when Conor returned to the house. Very thankful.

The photos that follow show my  walk from my home to my office in beautiful Fredericton, New Brunswick a place I am happy to call home, a place that allows me to take the time I need and want for me and my children. The weather this morning was beautiful and very pleasant for mid December.  With snow coming soon I could not resist the urge to get outdoors, to take the time to walk to my office instead of driving, to take the time for myself.  My office is only a few minutes drive, literally 3-5 minutes from where I live.  A walk is only 15-20 minutes.  

This morning I brought my camera and extended my walk time to and from the office, from Nashwaaksis on Fredericton's north side across the bridge and the St. John River to my office on the south side,  and back, but it was worth it for me.  Everyone needs time for themselves and parents of autistic children, parents of severely autistic children have their specific need for time for themselves. This morning I took some and I am happy that I did. I encourage every autism parent to take time for themselves, to make time for themselves.

During my walk I reflected on how lucky I am to live where I do, here in Fredericton, New Brunswick, Canada. Life is challenging at times as it is everywhere but generally we are very fortunate and I know that and reflected on it as I walked. I also thought of how lucky we were when we moved from Burlington, Ontario back home to Fredericton, New Brunswick in 1997, just one year before Conor was diagnosed with his autistic disorder.  Lucky not because Fredericton is better than Burlington but lucky because the move allowed me to spend much, much more time with both of my sons as they have grown. Lucky because I have been able to dedicate significant portions of my daily life to both my sons and in particular the challenge, as well as the joys, of raising our severely autistic younger son, who is now, in every physical sense, a strapping young man.

When we lived in Burlington we enjoyed the town. It was a very pleasant community in which to live.  Both our sons were born at the Joseph Brant Hospital in Burlington.  But my work at that time took me from the western edge of Burlington to downtown Toronto. Whether by car or by Go Train that meant a 2 1/2 hour commute each way, each day or 5 hours a day, 25 hours a week. Since we returned to Fredericton, when I drive to the office and back it is usually no more than 5-10 MINUTES of commuting each day.  And when I feel like it I can walk and enjoy the time.  

I can not imagine how different life would be for both of our sons, and particularly for our younger son with his severe autism and intellectual disability challenges, if I had not been part of their lives for those 25 hours a week over the last 14 years as they grew from little boys to young men.  I just can't imagine. 

I know I am very lucky and I believe my sons too have been fortunate to have had their Dad with them during these many hours and years of their journey from childhood to manhood. I know not everyone enjoys such good fortune but I encourage every autism parent to take whatever time, to make whatever time, they can for themselves and their children. 

Taboos, of autism and parenting at Ramblings of a Stone Age Queen is one of the best commentaries I have read about the realities of parenting an autistic child who suffers from meltdowns that can result in aggression towards herself and the parent who cares for her.  This is not a fluffy opinion piece by a high functioning autism researcher sitting in his lab. This is a concerned parent talking honestly about the harsh realities, the thoughts that spring into her mind in the midst of being attacked by the child she loves.  This is the story of mandyque; one parent who has stood up and said "this is happening to me".

"I have had a particularly difficult weekend with my autistic daughter, and it occurred to me that there are some things that only other parents of children with autism understand properly. But even then, there are things which are left unsaid, because we are too scared that we will end up facing criticism, or worse, social services involvement. But if we aren't honest about what is going on, we carry on suffering in silence, convinced that we are the worst parents and that we will be hated and reviled if we dared to speak of our deepest fears.