Monday, March 28, 2011

'When I hug my son, he doesn't hug me back" by Robert Naseef, Ph.D.

March 24, 2011. Cincinnati. Ten fathers of children with developmental disabilities and 2 male behavior specialists sat around a table on Friday evening waiting to hear what I had to say about being the father of an adult child with autism. They were wondering out loud what it would be like. Only a few had ever been to such a gathering. 10 out of 10 had children on the autism spectrum ranging in age from 6 to 24. Before the discussion began I told them that nothing they said would be wrong. They seemed relieved; then I invited them to share their experiences.

No accident that “When I hug my son, he doesn’t hug me back” resonated in the hearts of these men. Autism at its core is a social disorder of relating and communicating. Mothers have the same heartbreaking moments. It’s just that fathers are far less likely to verbalize their experience.

It’s a stereotype that children and adults with autism don’t connect. But they are not easy to bond with. Another father pointed out that his 7 year old son connects in some ways and not others. This was a rare opportunity for fathers to bond with each other and experience a sense of fellowship.

It felt good to be able to create that space for men by sharing bits of my own journey. Some of their children are nonverbal, some speak slowly, and others can’t stop talking. As one father mentioned his son who is slow to speak forces others to slow down. Because our children connect and speak differently, we have to pay attention closely. They actually engage us in a different way.

The men talked about their struggles and what they are learning. For example, the type of discipline many of their fathers used with them just didn’t work. Some spoke of “belt lessons” they received, and others described the shame they felt when not meeting their fathers’ expectations.

Then I guided them in a discussion of what they are learning. One man shared how he was still learning to be a father after 5 years. Others were finding they couldn’t shape their children into who they had expected them to be. They were making new dreams. Yet they worried about the future. Could their children ever live on their own? If not who would look after them?

Sharing that he was never known for patience, another man spoke of how much more patient he was becoming with his son who “speaks in slow motion.” One 18 year old still loves to wear Barney t-shirts. His dad finds sweetness and innocence in that but worries about him being targeted by bullies.

Finally we discussed things they enjoy doing with their sons and daughters. Some weren’t sure, so I just encouraged them to search and explore for those moments which might not be planned. Another man shared how he had decided to take his son who is nonverbal with him on a Saturday morning while doing errands. He enjoyed having his boy along, but he wasn’t sure if his son actually liked it.

Warm memories of riding with his own dad opened up because he had really enjoyed that one-on-one time as a kid. When he got home, he wrote on his Facebook about having a good time doing errands with his son. Several friends wrote back saying they too loved doing errands with their dads. He had stumbled on happiness with his son.

My approach was not about replacing negative thoughts with positive thoughts. It wasn’t about sugar coating their often exasperating lives. It wasn’t ranting about the injustice of it all, although that was allowed to happen freely. I tried to help them find a balance so they can be honest about their frustrations and their sorrows which come and go while also seeing and feeling the moments full of meaning and happiness which also come and go. This is what it is like to be a father or a mother of a child with autism. But even more this is what it’s like to live.

Saturday, March 19, 2011

Parenting and Judgment (Kate Altman, M.S.)

As I recently mentioned, I've been attending a New Moms Group each week. Some of the members and I went out for milkshakes the other day, and the discussion turned to the topic of parenting and judgment. None of us have been parents for more than three months, and yet all of us have experienced judgment of our parenting from someone--often strangers. One of the moms told us about how she brought her son to the mall when he was 6 weeks old. As she was changing him in a bathroom, a woman came up to her and asked her a barrage of questions about her son and his age, and concluded by admonishing her for taking him out of the house at such a young age. Many of the moms reported receiving judgment from parents and in-laws ("You shouldn't pick her up every time she cries--you will spoil her!" "You are feeding him too much. He will get fat!").

When I began working as a family therapist, I was, of course, not yet a parent. Perhaps because of that fact, I did not naturally judge my clients' parenting. And often (in fact usually) parents seemed to be doing much more right than wrong. So I spent a lot of therapy time validating parents' choices and pointing out all of the positives in their approaches. Parents were often shocked by this, and a couple were actually moved to tears when they simply heard from a professional that they were doing a good job with their child.

I'm not sure why so many of us judge others' parenting. Perhaps doing so helps us validate our own choices when they differ from someone else's. Perhaps the root of a lot of judgment is, indeed, that we all want what is best for children. But evaluating our parenting makes us extremely vulnerable and nothing can be as painful as feeling criticized for how we raise our children. Parents of children with special needs (especially "invisible" disorders, like ASD) tend to experience even more criticism than other parents. These parents, like all parents, need support and understanding as we navigate one of the most difficult jobs in the world.

Monday, March 14, 2011

Does your life ever feel like "Groundhog Day?" by Robert Naseef, Ph.D.

Have you seen the popular movie, Groundhog Day? Have you ever thought what it would be like if you were Phil? Stuck and re-living the same day for who knows how many days or months? Do you wonder what you would do if you were stuck and suffering through the same day over and over again?

I have a friend who has a son with classic autism and other medical complications. Some days his son will have horrible tantrums and bang his head on the wall. The walls in his house have been patched, but the memories and the worries live on. He says that his life feels like "Groundhog Day."

In the movie Bill Murray plays Phil, who is an arrogant and sarcastic weather forecaster. Phil spends the night in Punxsutawney, Pennsylvania in order to broadcast the annual ritual of the coming out of the groundhog. When he wakes up the next morning at 6 AM again, he is annoyed to discover that he is trapped for a second night because of a snowstorm. It turns out to be the morning of the day before, and everything that happened the day before happens all over again.

This goes on day after day no matter what Phil does. If he does nothing different events repeat as on the first day. But if he changes his behavior, people respond differently and then all kinds of possibilities open up. Either way each day he remembers what happened in the previous editions of the same day.

As the days pass, out of desperation, when he cannot seduce her, Phil opens up to his producer, Rita. Through the intimacy, something changes. Phil begins to live more fully each day in a way that he has never done. When he comes across a street person, he takes him out to eat. His compassion for the old man makes him want to help people. Having suffered, he finally becomes able to empathize with other people's suffering. He becomes a local hero.

What is so powerful about Groundhog Day is the window it gives us into the experience of what it would be like to make a breakthrough like this in our own lives. When we get beyond the denial and resentment over the conditions of our lives, and accept our situation, then life becomes authentic and full of meaning and compassion.

The pain of my son’s autism over 30 years ago kicked open that door for me. My awareness has grown ever since. When we can’t change or fix something, it's common to believe that tomorrow will be exactly like today. If I just try hard enough, I’ll get through it. Thinking like this binds us to the stories of our past, clouds the present, and limits our vision of the possible. We cannot control what autism or another serious issue can do to our lives. We cannot determine what emotions will arise within us. We are often rendered powerless.

What we can do is to relate to our lives differently. This means accepting that change is inevitable and to believe that it's possible. Our feelings come and go: happiness, sorrow, laughter, worry… We may be fearful or worried in the morning, and that feeling may go by the afternoon. Hopelessness may be replaced by a glimmer of optimism. Even the most challenging situation is always unfolding and shifting.

Even in our pain and suffering, we can find a way to go on and keep trying to look for the possible. This is not a Pollyanna where everything will be just fine. Nor is it about replacing negative thoughts with positive thoughts. But going on with courage, then as long as we are alive, the possibility of change is alive. We cannot control the thoughts and emotions within us nor the universal truth that everything evolves and changes. We can, however, just be aware and alert.

My friend’s son can be having a good day, sweet and innocent as only a child with autism can be. And then out of nowhere, this boy erupts in pain into a horrible tantrum, banging his head. This boy’s mother and father suffer deeply, but they don’t give up. They love him, and each other, and they keep living as best they can, helping others, and trying to help their boy.

Monday, March 7, 2011

Parenthood Post: Part 2 (Kate Altman, M.S.)

I just caught up on my TV viewing from last week, and felt that I ought to post about Parenthood again. In last week's episode, Adam and Christina are faced with the challenge of explaining to their son, Max, what Asperger's Syndrome is...and that he has it. Adam and Christina had chosen to not tell Max about his diagnosis, but when he overheard them talking about his AS (in a not-so-cheerful conversation), he confronted them and they had to explain.

Telling your child that he or she has an autism spectrum disorder is a daunting and confusing challenge, as the show did a nice job of conveying. First of all, ASDs are simply difficult to describe and define. How do you explain to a child what "pervasive developmental disorder" even means? Secondly, you must explain to a child that it is a lifelong condition with no "cure," but that he or she must work diligently in therapy/the autistic support classroom/PT/OT/social skills group in order "improve". Furthermore, you must somehow convey that having an ASD makes life more challenging in some ways (particularly social), but that it also includes positive features. On the show, Adam struggled with the latter. At first he saw focusing on the positive aspects of AS as "sugarcoating" the diagnosis. But after spending time with Max, he realized that the positive features of AS, like intense passions and an impressive memory for certain facts, are genuine.

Though Adam and Christina faltered at first, they ended up communicating with their son in a clear, direct, and supportive manner about his diagnosis and what it means to have an ASD.
What are your thoughts on disclosing the ASD diagnosis to a child?