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RAISING A CHILD WITH ASD: A DAD’S PERSPECTIVE

Dad

During my 35 years of providing a speech and language family centered approach to treatment, I seldom have the pleasure of talking or working with Dads and when they are present they rarely engage in conversation regarding their child. However, on those rare occasions some Dads will voice their fears and anxiety over the uncertainty of the future. Others have shed tears when we validate their fear that their child has autism spectrum disorder. All parents grieve but Mothers often find solace and strength in support groups or in discussions with close family and friends while Dads suffer silently.

It was during a more recent frank but unexpected conversation with a Dad that I became acutely aware of his pain and decided in that instant to organize and host a “support” group meeting for Dads. I wanted to offer them an opportunity to talk with other Dads, not clinicians but real fathers with similar situations; sons and daughters with ASD.  I needed a “special” someone to host the group; an individual with name recognition and a solid reputation who could motivate the Dads to come out and talk about their fears, joys, hopes, and dreams.

In late August, 2014, I began to publicize what I called “An evening of intimate conversation and bonding” with NFL veteran quarterback, sports commentator, author, and parent of a son with ASD, Rodney Peete. I knew I could get the Dads if I could solicit the support of the wives who saw the need and quickly signed up their husbands. Some went so far as to personally drop them off on the evening of the event!

Thus, in September, 2014, we hosted our Dads with children ranging from 3-18 years of age. All fathers with the exception of one, had children diagnosed with ASD.  Four of the Dads had more than one child with ASD. I couldn’t help but notice the demeanor of several of the Dads who walked in looking a little “timid” and unsure of what to expect. I had arranged 2 rows of chairs in a semi-circular structure and intentionally rented 3 small cocktail tables to facilitate social interaction during their dinner.

As Dads were arriving, I received a call from Rodney Peete to say that he was stuck in LA traffic and was running a bit late. When he arrived he entered in typical Peete fashion; cool, calm, down to earth, and just one of the guys!  As I expected, our Dads warmed up to him and ultimately to each other very quickly.  I made the introduction, took some pics for posterity, shared that the evening was being videotaped, encouraged them to eat and told them that I would return in two hours.

Rodney opened the discussion by stating that he had no agenda and that they would all learn from each other. He asked each Dad to tell a bit about himself, his family, as well as their challenges and struggles. He followed by candidly describing how he felt when he received the devastating diagnosis of ASD for his son, now 18 years old. He referred to it as a “scratch in the record.”  He, like most Dads in the room, agreed that this was not the life they imagined or would have wanted for their child. Helplessness, loss, guilt, denial, hurt, and psychological barriers were common themes used to describe their reactions.

A rather provocative statement was made by one Dad who said “there is a thin line between denial and hope. Some denial helps. You can’t take denial as a “fait accompli.”

 

Rebuilding the Dream… In life we are given tests that teach us lessons. 

 Dads shared their moments of realization that the child they had gotten was not the child they envisioned. Dreams of playing sports with their sons or as Rodney discussed. the anticipation of bringing his son into the locker room to meet and hang with the players was not necessarily going to occur in the typical manner. Different relationships needed to be established. All agreed that acceptance and the willingness to look at the world through the eyes of their son or daughter with ASD was critical for acceptance.

The importance of faith was broached by one of our younger African American Dads who shared how the diagnosis tested his faith. He described his behavior as selfishness borne out of ignorance. Another African American Dad commented that his trust in God helped him to be patient and accepting.  I reference race because our religious beliefs are integral to our culture and our cultural beliefs influence our world view and perspectives on life.

 

Attitudes on Marriage…. Current studies debunk the myth of exceptionally high divorce rates.

All Dads agreed that receiving a diagnosis of ASD puts an incredible strain and weight on a marriage and that this “unexpected turn” affects not only the child but the entire family. And, having more than one child with ASD is even more challenging.  One father shared how the second diagnosis “broke his marriage” while another countered and said that the second diagnosed child brought the family together.

 

Attitudes on Spouses… The Angel of the family is a good wife and mother.

Despite the marital stress, fathers repeatedly praised their wives for being fighters, holding it together, and making it all happen. One referred to his wife as a “tiger”.  Another said, “I thank God for my wife because she recognized the problem when I was in denial and got help for my son.

 

Special Moments…..Spend more time counting our gains instead of our losses. 

 —–The most beautiful day of my life was when Dr. Wiley said, “We’ve done all we can do. Your son is dismissed from speech therapy.”

—– I was so proud when my son asked me for chicken nuggets.

—– My son was bullied at school. The principal volunteered to talk to the students but my son wanted to do it. He even wrote an essay on bullying.

—-My son is 19 and I appreciate his tenacity and will. I wish I had his fortitude.

 

On Puberty……Puberty hits like a hurricane and brings a new set of rules. 

One dad raised the question of puberty and admitted that he didn’t know how to address it. Rodney spoke candidly about how and why he broached the subject with his son.  He shared a personal story which literally had all of the men in raucous laughter.  I surmise they probably were reflecting on their youth. He referenced the importance of respect and regard for the females in the household which also occasionally included his grandmother. He explained that for him it was important to be honest and to keep it real and to assure his son that his reactions were normal.

 

On Education ……We should think “outside” the school. 

Not unlike Mothers, Dads are equally concerned about the schools. Class size, type of setting, transitioning to middle school, lack of appropriate supports, academics, socialization, balance of being with typical kids, friendships, and bullying which will be addressed separately, were discussed. Rodney stressed the importance of teaching children how to function in the real world. Mothers were once again credited as being strong advocates and fathers frustrations were consistent with those expressed by most parents.

 

On Bullying……It’s been estimated that 63% of children with ASD have been bullied.

One of the Dads of a younger child raised the topic of bullying to ascertain the appropriate response to it. Many had experienced bullying and most readily shared their experiences while offering solutions.

One dad spoke of the agony he experienced while listening to his son, then in 4th grade, cry throughout the night after being bullied in school.  His son was unable to articulate what happened to him.  Dad took him to school the next day and waited for kids to gather and in front of 80-90 kids he told them to “not mess with his son!”  That worked for him.

Another Dad discussed the importance of helping your child to understand that everything is a learning experience and how to develop empathy for the bully while learning how to maneuver around them. Several others talked about holding school assemblies to explain autism, and the role volunteering serves in soliciting greater cooperation from the school. Rodney shared how he mobilized the support of parents at his son’s school to look out for each other’s child but also the need to “keep” your child away from the wrong kids.

 

The Take Away…… Touchdown! 

We often compare mothers to Mama Bears who will fight for her cubs. I’m not exactly certain if words can articulate the respect I have for our fathers whom we know suffer silently.  There is definitely a need for more “support” group meetings for fathers. Rodney and all of the dads are to be commended for the encouragement and lift they provided to each other. It wasn’t a pity party. It was a “man-up” party. The Dads that assembled on that special evening are amazingly selfless strong advocates for their children and their families.

Our 2 hour conversation lasted for 2 1/2 hours and could have gone longer but I had to break it up.  I thanked them and shared that their wives were circling the parking lot in an effort to “collect” them. They all hugged, took more pics with Rodney, complimented each other for staying the course, and promised to stay in touch via email. I think that the wives would agree that their husbands came home with a renewed spirit! We have some amazing dads!