Tuesday, January 02, 2007

Breaking Autism Taboo - Speaking Truths About Raising Severely Autistic Children

Michael Burke of Henrico County Virginia has broken the autism taboo about speaking openly and publicly about the challenges, stresses and pressures of raising severely autistic children. He has spoken about the pressures and stresses placed on family members and the injuries and risks his family were exposed to. Mr. Burke's public disclosure of these realities will meet with sympathy from some but will also likely result in public criticism, even ridicule and condemnation from some self appointed experts who do not believe that autism is a disability just a variation on human nature that should be appreciated.

As the father of a severely autistic 10 year old boy I understand first hand some of the realities Mr. Burke describes. My son Conor brings me great joy and strength but his severe autism also poses great challenges. I thank Mr. Burke for speaking openly and honestly and for providing other parents an outline of some of the realities that may confront us as our severely autistic children grown older. The Richmond Times Dispatch also deserves credit for covering this aspect of the story. Attached are links to the Richmond Times-Dispatch story and Mr. Burke's letter. I have also posted an excerpt from the article and the edited version of Mr. Burke's letter.


Richmond Times-Dispatch

"Autism leads to hard decision
Terrible heartbreak, major relief

Mike Burke used to tell people he hadn't had a decent night's sleep in 10 years.

They thought he was kidding.

He didn't tell them about his failing health, his falling income or his wife's nervous breakdown. He didn't talk about being choked by his young son as he drove down the highway or cleaning up after the boy following yet another out-of-control outburst at 2 o'clock in the morning -- or simply trying to comfort a child who couldn't be comforted.

He didn't say much about the living hell his home had become as he and his wife, Pam, tried to raise a child with severe autism.

"It was horrible," said Burke, who works as an investment adviser. "We just tried to stick it out."

However, the sleepless nights and unending days finally wore them down. Eventually, the Burkes, who live in Henrico County, did what years before would have seemed unthinkable to them: They placed their only child, Ryan, in a youth group home shortly after his 16th birthday in 2003. It was a terrible heartbreak and a major relief.

"As much as we love him," said Pam Burke, "I couldn't do it anymore."


Letter from Michael L Burke

"Editor's note: This is an edited essay written by Michael L. Burke of Henrico County. He invited The Times-Dispatch to publish his letter in hopes of letting other families know they are not alone.

Hello, my name is Michael Burke, and my son's name is Ryan and this is our story.

The past 19 years have been the most difficult and painful time in my life, and I would like to share it with you. I write this story as part of my therapy in my efforts to deal with these past years of heartache and pain.

Everything you read in this article is true although some parts of it may be difficult to believe.

March 3, 1987:

I remember the weather was mild back in March of 1987, as winter was easing and signs of spring were in sight. On March 3, 1987, our son, Ryan, was born . . . and it was a great day.

My wife, Pam, and I had been married for 11 years then, and Ryan was our first child. When we brought Ryan home from the hospital, our neighbors had placed a banner across our front yard saying, "It's a Boy!"

Later that day, both our families came over to meet Ryan and congratulate us on our new addition to the family. Ryan was the first new baby on either side of our families and everyone was anxious to see him.

My first thoughts during that first week were that of excitement. I was going to be a great dad and teach Ryan how to play football and baseball and all the sports. I was also focused on giving Ryan the best education that I could afford.

The first several years of Ryan's life went somewhat normal, but he was having trouble sleeping and staying asleep. He often had ear problems and cried a lot during the night and sometimes during the day. We figured that these problems would pass and things would become more normal as he got older.

Between the ages of 3 and 4, we noticed that Ryan was not socializing with other kids and his vocabulary was lacking. His overall condition was worsening and on the advice of his pediatrician we took him to see several different doctors who specialized in childhood problems. I had taped Ryan crying and screaming all night long and played it for the doctors so they could actually hear what a typical night was like. After examining him and testing him, the diagnosis was autism.

Our dreams, our world, everything was crushed as we listened to the doctors tell us about what we could expect in the future. We did not want to accept this diagnosis and tried in vain to help our son. We did brain scans and MRIs and took Ryan to New York and Cleveland [to see specialists]. But nothing worked.

As the years passed, his condition continued to decline and more problems began to surface. In addition to the crying and not sleeping, Ryan started experiencing severe ear problems causing him extreme pain. The doctors simply said that these episodes were a part of autism and there was nothing they could do.

During these episodes, Ryan would lash out at us, punching us and breaking furniture and household items and anything he could get his hands on. I remember driving down I-64 with Ryan in the back seat experiencing an ear attack and him reaching up and choking me as I was driving. These events were constantly happening to both of us and to any courageous caregiver willing to watch Ryan for any length of time.

By the time Ryan was 7, my wife had broken down and was suffering with anxiety, depression and fatigue. The years of no sleep and frustration had taken its toll on both of us as the stress would not let up. In addition, my income was dropping along with my job performance and now we were living in a small rental house that I had purchased years before . . .

As Ryan entered his teen years, things became more difficult, as his physical size and strength were that of a young man. We have now lost most of our help as our families and our caregivers can't handle his size anymore. Because of his size, we were now pleading with his social worker for more help and for a possible placement for him . . .

At this point in time it was not about Ryan anymore, it was about us -- on a scale of one to 10, our quality of life was a 5. I had lost all hope now and I wondered what Ryan's purpose on this earth was, because it didn't make any sense.

By the time Ryan reached 15, the situation had gotten even worse as all of Ryan's problems were in full force. At this point in time, Ryan was on a list for placement into a children's group home scheduled to open in the spring of 2003. We needed to make it one more year and this was the hardest year of all.

It was difficult because my health was failing and we had no help at night in dealing with the stress. I was having chest pains and extreme high blood pressure and spending many daytime hours at the doctors' office. I would have to get up at night and change my socks because they were soaked in sweat from the elevated blood pressure.

As Ryan arose at 2 a.m. or 3 a.m. on those nights, I was on my own, the last man standing -- I was like a dying soldier trying to make my last stand as I fought off my physical problems to deal with his. My wife attempted to assist me during those midnight episodes, but the years of wear and tear on her made this task almost impossible.

How we made it through, I'll never know.

Finally, on March 12, 2003, the group home opened, and Ryan was the first one enrolled. That first night was difficult on Ryan as he did not want to accept his new living arrangement. He kept telling me, 'Daddy, I want to go home.' I looked him in the eyes and said, 'Son, I can't do that. This is your new home now,' and we all cried.

Today, Ryan is 19, and has accepted his new living arrangement and is doing somewhat better. His ear problems have ceased, he is using the bathroom more and is participating in school better. We see Ryan on Sundays now for pizza and ice cream, and we all enjoy the visits very much.

I would like to thank the following people for helping us during these trying times.

Thank God for St. Joseph's Villa and their respite program, as they were the main source of respite for us. In addition, Pam's mother, Bertha, and her sister, Linda, and her husband, Waverly, were also there and helped us on my occasions. Also thanks go to the LUV group at the West End Assembly of God and to the many caretakers who came into our home to assist us over the years.

If you know someone raising an autistic child, please offer them some assistance."


Maddy said...

I read this article in it's entirety yesterday and I agree with you that it is likely to cause a storm.
I choose very carefully about 'what' to post myself.
Many people, fortunately, do not have to deal with self injury/ violence / abuse - those of us that do have to 'deal' with these issues, know the truth of the matter.
Best wishes

jypsy said...

As the father of a severely autistic 10 year old boy...

I'm thinking that you would use the same term ("severely autistic") to describe my son Alex. I'm thinking where I use the term "very much autistic" you use "severely" and "profoundly" autistic.

Mr. Doherty, can you explain to me what makes your son "severe" and "profound"? I asked on this blog before and will ask again (and I'll accept "that's too personal a question to answer so I won't")- "At what age did Conor first begin to develop verbal communication?"

For many years the story of "raising Alex" was easily accessible online. At the end (in 2005 I took my website down) it was linked to many of Alex's assessments and reports from SLPs, Pediatric Neurologist, Pediatricians, Developmental Psychologists etc etc (and while one can still access almost every version of Alex's Life on the Spectrum that I ever wrote, the links to the reports & assessments are no longer accessible). My own optimistic perspective was shared along with the not very optimistic perspective of these professionals. For example:
Alex at 3 (from a report by an SLP the day before he was diagnosed):
-At home Mum had to physically rearrange things as Alex is into everything. (This is easy to relate to as Alex had my office in a shambles before he left!). Alex is not allowed in the kitchen and his room is basically stripped down to bare. At night mum locks his bedroom door.
-I was unable to make eye contact with Alex.
-Some babbling vocalizations. Appropriate inflection patters but no real words essentially.
-Mum reports Alex is showing more self control now. However he still has problems in this regard - frequent TEMPER TANTRUMS which I witnessed at the office. -Mum had to literally drag Alex along both coming to my office and again upon leaving.
-I did notice Alex smile once during my time with him but this was not a social smile directed at his mother. Rather, it seemed to be in enjoyment of the noises the typewriter was making when he pressed the keys.
-my "gut feeling" about this child is worrisome. Prognosis is indeed guarded.
This same report quotes me as saying:
-Mum stated "Alex is not stupid, maybe he'll be a mad scientist"
-Mum commented "He's a Sweetie"

What was Conor like at 3?

Unknown said...

Conor's paediatrician has described him in a written opinion as "profoundly" autistic. He has intellectual, communication and behavioral challenges. Conor has exhibited the complete range of behaviors typical of severe or profound autism including biting, head banging, screaming in public places etc.

I think you should assume that most people living with and raising a child have a good understanding of the severity of a disability which is what autism is.

My son is a great joy in my life. He literally brings me happiness every day and can lift my spirits easily after a tough day at work. But I refuse to pretend that he does not have a severe and serious disability. Conor will not be capable of caring for himself in adulthood. When I and his mother are gone he will be in the care of others. That is the reality that I refuse to ignore or pretend does not exist.

You may cite examples of autistic persons who appear to have made tremendous strides. I have been to Centracare in Saint John New Brunswick and dealt with other cases involving autistic youths and adults. They, and their families, need the help of an informed public.

I applaud Ms. Stagliano and others who refuse to sweep the realities of severely autistic children under the rug. Enjoy our children? Absolutely! Ignore the realities of their disabilites? Not a Chance!

jypsy said...

But I refuse to pretend that he does not have a severe and serious disability.

Is that what you think I'm doing?

Anonymous said...

I am awake because tonight my severly autistic son escaped our house. He is 12. I have 3 autistic kids and i thin Im at my nervous breakdown point as I am considering leaving my family today. The state refuses to help us and pay for placement. We are low income. They tell us there is NOWHERE for him to go. I called child services when he was beating up his siblings in the middle of the night and told them we cant be responsible for him someone will definitly get hurt. They told me they will not allow us to say that in my state and too bad pretty much and walked out of our lives. Said we aren't "abusive" so they cant help. I live on the edge of my seat by the minute just waiting to get hit or to see someone else get hit..or for him to get out even though we have about 20 locks in our house and all our windows boarded up since he loves to break glass. I am honestly out of answers. Glad you found your way...glad your family is at some sort of peace and your son is safe. God Bless you and your family.