Special Children, Special Stress: Special Holiday Tips by Robert Naseef, Ph.D.

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Children with special needs such as autism and other conditions can be extremely loveable and endearing and yet simultaneously hard to hang out with—especially at holiday time. While many people find the holidays stressful, there is a special twist for families who have children with special needs. The frequent behavioral challenges can make for gritty and unwelcome moments. By knowing what is realistic to expect and being prepared with coping strategies, families can sidestep many problems and enjoy their time together as much as possible.

On Wednesday, November 13, I recorded a conversation with Jennifer Lingle, M.Ed., founder and president of the International Autism Association for Families and Educators. Jennifer is a compassionate and experienced teacher, and she has made this recording available as a free download at http://www.autismeducates.com/getting-through-the-holidays-recording/

Our conversation covered these questions among others:

What can I do to prepare my son and my family for Thanksgiving?  I am really nervous about our 3 year old son's behavior (and our family's reaction to him). 

Last year, our six year old daughter with autism kept taking the ornaments off our Christmas tree.  What can we do so that we can enjoy decorating our home, while still respecting her needs?

We have three boys and two are on the autism spectrum.  I often feel bad for our other son. It seems that all of the attention goes to the other two, no matter how hard we try to give them all attention.  Do you have any recommendations?

I am a father of a 7 year old boy with Asperger's.  His mother and I are divorced and this is our first holiday season separated.  I am trying my best to make our home cozy and comfortable for my son. How can I and my ex-wife make this transition easier?

Listen in and see what may help your family. Keep in mind that holiday time is exciting for children, and children with special needs are no different.  In answer to a common question, for help in picking out toys, check out the “Top Ten Things to Consider When Buying Toys for Children with Disabilities” http://www.kidsource.com/kidsource/content3/toys.disabilities.html   

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To wrap it up, understanding each child's individual characteristics is the key to enjoying the holidays. As opposed to wishing and pushing for “normal” holidays, understanding and accepting your unique child, is the best way to plan and enjoy your time together. An important lesson that all children can teach us is that parents’ time and attention is exciting and wonderful. Try not to get caught up in the consumer oriented rush. Connect with family and friends and all whose lives we touch.  Let’s enjoy our time together.  

A Mother's Story That Touches Heart and Soul: A Brief Commentary by Robert Naseef

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Holding on and letting go, pushing and pulling-these are overarching themes of parenting for mothers and fathers.  This normal developmental process can be even more stressful, especially for mothers and the rest of the family, when a child is growing up with autism or other developmental issues.  This struggle is captured with honesty and keen insight by Glen Finland in next stop: a memoir of family, which I highly recommend for parents of typical children as well as those with developmental challenges.

After being her son's advocate for so many years as this mother puts it, "How could I just shut off my dependency on his dependency on me?" Nonetheless she describes how she learned to back off in small steps as her son, David, who has autism, learned to ride the Metro in Washington, DC.

While she describes how "learning-to-let-go business is killing me." She observes how her son "becomes more and more independent in that process."

This learning to let go is part of the unfinished business of motherhood which needs time and support to evolve in adolescence and early adulthood.

When I talk to parents in my professional role, the topic of what happens when our child grows up is never far from the conversation.  As a reader, I found this a book to savor.  I didn't want it to end.

Treat yourself to some of this mother's writing on her web site.  

Sample the book online.  See if it helps you understand your own journey.

Anger: Normal, Natural, and Difficult by Robert Naseef, Ph.D.

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Anger is completely natural—but not easy to manage properly.

As Aristotle put it, “Anybody can become angry - that is easy, but to be angry with the right person and to the right degree and at the right time and for the right purpose, and in the right way - that is not within everybody's power and is not easy.”

As if that is not a big enough challenge, it is the only socially acceptable emotion for men to express. Conversely it has traditionally been considered socially inappropriate for women to express anger resulting in a significant challenge for couples.

Anger is often triggered by the thought or sense that something is unfair. Anger is energizing; the adrenalin released can be felt in the body. Managing our anger involves the actions and decisions we make in response.

What triggers an angry response?  There are many possibilities:

The targets can be: our child, our partner, a relative or friend, a school system, a doctor, etc. Guys often don't like to admit being angry. It helps to have some synonyms handy such as: pissed off, grumpy, irritable, irked, impatient, exasperated, miffed, etc.

On August 4, I facilitated an episode of “Guy Talk” at www.autismbrainstorm.org.  To hear what these guys had to say click here. 

One guy talked about how when he is angry about a situation, he asks himself “what am I sensitive to?”  He reflected that in the heat of the moment his thinking cap is off.  His child with autism has helped him to look at his own trigger points and sensitivities. He needs someone to tell him to step away and get a grip. He realizes that getting physical is a mirror for his child and the worst thing he can do when his fight or flight reflexes have been triggered.

Another guy tries to be sure he is not angry when disciplining his daughter. He sees discipline as correction and teaching. He remembered how anger can be part of the cycle of grief. He has observed how fathers of children on the spectrum often seem to have anger looking for a target. It could be harder without a target and you go around looking for one.

Another important point was the observation that frustration may be the gateway emotion to anger and awareness that losing control is around the corner. Once someone goes over the line, the ability to identify options gets impaired.

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One father shared how he is careful to realize that he is modeling to his children and strives not to model anger. He sees his anger arising when things don't go his way. On the other hand, there are times when you should be angry such as when your kid is getting bullied, and it is good to shake things up by responding in a constructive way.

Another guy grew up as a student in special education. He was bullied and teased relentlessly. Every day he had to watch his back and had no one to turn to. He was confused and angry. Now he has a son with a verbal apraxia, and he is passionate about protecting his son from the torment he went through growing up.

What helps a man? Or a woman for that matter? Telling someone to calm down is the worst thing ever. Letting him or her know he is not the only one who's angry can help in redirecting into a problem-solving mode.

Expressing concern or empathy can also be useful.  As one guy put it saying “I get you; I understand you man. That really helps.”

Accepting our feelings, our child, and ourselves is a prerequisite to managing our responses to anger. So for men and women, when noticing anger, take a step back. Stop and think. This may not be easy or come naturally but learning to identify anger as it is arising can help us reel in our impulses and find options for our children and our families. 

Guy Talk: Being Present with Children and Families by Robert Naseef, Ph.D.

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The average guy finds it hard to sit still and listen.  We jump to problem solving especially when we lack the words to express what we are experiencing.  Yet we yearn for connection with our children. On July 7, I moderated “Guy Talk: Fathers Roundtable” at www.autismbrainstorm.org with 7 guys who spoke openly about their struggles to be present with their children.

  • Start where the child is. Watch, wait, observe. You will often find out something unexpected that you can build on.
  • Avoid interrupting; this makes it hard for one’s children and wife. Learn to listen and wait until people finish what they are saying. Interrupting usually comes from thinking about what you're going to do or say instead of being present with what the other is saying. Try to allow a pause after someone finishes speaking in order to avoid interrupting.
  • It can be frustrating to engage a child who prefers video games. Limit screen time. In the summer, there is more unscheduled free time which may be more challenging.
  • When a child has a physical disability it forces a father to pay attention since she needs hand over hand assistance with everything, but there can still be a lot of frustration.
  • Besides being patient and listening, show interest by asking a question when there is a small pause. Get your child to explain what he is interested in.  Learn the names of the characters in their favorite movie, etc.  We may have to accept that we do not like the activity in order to interact with our child.
  • Showing interest in what your child is interested in is key. To ask a child to enter our world, we have to enter his first.
  • Real life with a child with special needs is different from the epiphany that one might see in the Hollywood version. There is no magical transformation. Rather something happens between you and your child and you want to change, to be a better person, more patient.
  • Sometimes we can be impatient for our child to learn a simple skill as such swinging in the playground.  We may just have to be patient and wait until our child figures it out. By taking this approach a father can enjoy himself and his child in the moment.

Moments of frustration can be transformed when we are able to stay calm and change into a problem solving mode.  This can be a lens of opportunity which enables us to figure things out. So what about a meltdown when a kid is freaking out? In our guy talk, the difference between a tantrum and a meltdown was discussed.

  • The tantrum suggests communicating the intent to get something whereas a meltdown is an overload whether sensory, emotional, or cognitive.  Both call for the adult to be calm and receptive in order to help a child to organize herself. It's important to wait it out and talk about it later. The child's sensory profile may be a key to understanding a meltdown.
  • Presence means controlling yourself and providing calm thereby modeling what it means to de-escalate from the meltdown and sending the message that we are in it together. When it's over we will figure it out and where to go from here. If possible, find a way to buffer the overload or help the child get out of it. It is essential to use our relationship during the hardest times to figure out our options.  

So raising a child with autism or other special needs is moment by moment.  Average guys show their love and support through action, but sometimes pausing by stepping back and being there calm and present is the first step. When action is called for, this pause can help men to use our desire to find solutions more effectively.

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The contributors this Fathers’ Roundtable included:

Stephen Shore   http://www.autismasperger.net/

Brian Mangini    http://afatherslove.co/

Brain King          http://brianraymondking.com/

Mark              http://fathersnetwork.org/

Peter

Kaveh Adel    www.Boyandredballoon.com

Tim Lomas     http://www.autismmaps.org/about.html and  http://ericspeaks.blogspot.com/ by Eric’s mom.      

The next “Guy Talk” is Sunday, August 4, at 9:00 PM Eastern.  The topic will be the male perspective on dealing with anger.     

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Being Present: Improving Family Interactions by Robert Naseef, Ph.D

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As we take a break for the Fourth of July in the United States, we are reminded that autism and other special needs never take a holiday. How can we enjoy life and improve our family interactions while dealing with the daily stresses that go hand-in-hand with raising children who have challenges?

When I ask parents what they are learning from their children with autism or other special needs, the most frequent answers I get are patience and being present. What do these parents mean? How do they work through their frustrations and build a satisfying relationship? It's not easy but many families are becoming stronger and more connected than one might imagine.

This Sunday, July 7 at 9 PM Eastern, I will be hosting a Fathers’ Roundtable through a Google hangout at www.autismbrainstorm.org  to discuss how fathers are handling these challenges in their families. Mark your calendars, and if that time is not convenient you will be able to watch a recording of our conversation on YouTube.  Our June conversation can be viewed at http://www.youtube.com/watch?v=85eYcDI2S2A.

Father’s Day 2013: What’s a man to do about a problem he can’t fix? by Robert Naseef, Ph.D.

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Becoming a father for the first time in 1979 was a life-altering experience. Those first smiles, first steps, and first words seemed magical. Then at 18 months, my son stopped talking, began flapping his arms, and fussing.  From those first symptoms until now, I have been living and learning about how to be a father and how to help other men raising children with autism and other special needs. This article summarizes some tips for men and their partners.

First, men need to learn about autism. When my son was diagnosed with autism, I thought my head was going to explode. I couldn't get the word autism out of my mouth. What starts the process of being able to talk about it is stepping up and getting involved in caring the child’s needs. A father finds himself useful when actively involved in helping his partner meet their child's needs. There is an overwhelming amount of information on the Internet.  I recommend starting with major organizations such as the Autism Society, Autism Speaks, the Arc, etc.

Second, men need to revisit and adapt traditional male norms. There is a typical male code for handling overwhelming emotions. In the face of an overwhelming experience such as autism, men are expected to keep the lid on emotions, take charge of practical details, support others, and take on the challenge as a chance to problem-solve or even as a test of traditional masculinity. However, men are not supposed to lose control, to openly cry, to worry, or to express overwhelming sadness. Unfortunately this doesn’t work well with mothers.

Asking a man how he feels does not start a conversation.  Instead try guy talk, such as:

Let’s figure out a plan to go forward. (men do best with some kind of plan)

Third, men need to strengthen the bond with our child. This is the same child you fell head over heels in love with at the moment of birth, and your child needs you. Although men certainly need to learn how to listen and open up, they relate best through action. I wanted to be a better parent than my father when I held my son Tariq for the first time in 1979. I also expected Tariq to become a better son, a better man than me. I looked at my son and saw myself, only better. His diagnosis of classic autism shattered that reflected vision like a broken mirror.

This broken mirror leaves many fathers, especially those of boys with autism, feeling powerless and shamed, and 80% of children diagnosed with autism are boys. They love their children and do not want to fail them. Men respond better to having some kind of action plan. So the action plan I give men is: Find something you enjoy doing with your child. You may have to start with something your child enjoys that you yourself are not really into. But start with that. Make contact. And from that contact, find the things you both enjoy doing together.

Fourth, connect with other men in similar situations. Find other men to share thoughts and experiences with at your child’s school or at a local autism organization. The Fathers’ Network at www.fathersnetwork.org is a great place to start on the Internet. There are many essays by fathers there who are raising children with autism and other special needs.

Fifth for women, remind your partner that you don’t want or need him to fix everything, merely to listening and showing his caring is often enough. Tell him what he is doing right which helps him feel valued and secure. When possible ask for help in finding solutions--even if you think you already have one. This makes it easier for a man to listen and not be overwhelmed by emotion. Remember to plan time together as a couple. This is the first thing to go under the enormous pressure and taking care of your relationship is vital for both parents.

If you find these tips helpful, you can download the chapter on fathers from my new book, Autism in the Family: Caring and Coping Together under the resources tab at http://products.brookespublishing.com/Autism-in-the-Family-P655.aspx. Also I will be facilitating monthly on line discussions titled “Fathers Roundtable: Guy Talk about Raising Children with Autism and other Special Needs” at www.autismbrainstorm.org

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Don’t forget to find something you enjoy doing with your child. It can change your life. Fathers and mothers do not control autism; there is no cure, and it waxes and wanes often unpredictably.  Parents do have a lot of control over the relationships in the family. Focusing on your relationships is an action plan—see where it can take you.

Mothers' Day 2013: Appreciation- An Action Plan for Fathers by Robert Naseef, Ph.D.

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Setting aside a day to honor mothers has ancient roots, but true gratitude requires expression beyond flowers, cards, and going out to eat. A mother’s love is boundless, and this is a time to reflect on the sweetest memories of our mothers and grandmothers. Beyond honoring the woman who raised him, the most important thing a father can do for his children is to love and appreciate their mother. So here is a plan for fathers of children with autism and special needs to honor the devoted mothers of their children.    

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Being overwhelmed by the responsibilities of motherhood is normal, but it can be even more intense when a child has special needs. I spend a good deal of my time as a psychologist listening to mothers.  Mothers often seem relieved by giving voice to their struggles—particularly the guilt about not doing enough or missing something they should have done or thought about. This maternal protectiveness is driven and powered by a profound sense of responsibility and guilt.  I have come to learn from listening to mothers that this is a part of the unwritten job description of motherhood.

Here’s the plan. Tell your partner how much you appreciate her and everything she does for your children. Be specific about all the wonderful things she does and how hard she tries. Ask what you can do to make her job easier. Gently keep asking and showing up to do stuff. This is how to be a good man in your situation. Help her to take a breath, literally and figuratively. Most likely this may help her feel better—it may even help her appreciate herself and you in the process.

Autism Awareness and Acceptance 2013

On Monday, March 25, I was part of “Voices in the Family” a public radio show with host Dan Gottlieb. Eustacia Cutler also lent her voice to the discussion. Eustacia is the mother of Temple Grandin, a well-known adult with autism, an author and speaker. Dan has been living with quadriplegia for 33 years, and I have a 33 year old adult son with autism.  We had a wide-ranging and soul searching conversation discussing the worries and the heartaches as well as the extraordinary lessons that children with autism teach us about acceptance and about what it means to be family. The podcast of that discussion is now available through the WHYY website.

Autism Awareness Day Philadelphia Zoo, 2007.

Autism Awareness Day Philadelphia Zoo, 2007.

What does it mean to be aware of and to accept autism?  Last March 1 in 88 children in the U. S. were diagnosed with autism. Just last week the federal government again revised the prevalence of autism upward, saying the developmental disorder now affects 1 in 50 children. All of these children and their families are profoundly affected—their parents, their brothers and sisters, their grandparents, their friends, and the larger community. How do we deal with awareness or acceptance of an issue that may not change or only changes slowly?

While the interventions for autism understandably focus on the symptoms, services tend to ignore the big picture of the family which includes parents and siblings, and the family’s overall health. Each child with autism lives with a family, and that family lives with each child. While the symptoms change and often lessen over time, they don't go away, so families must learn to live with these problems long term.

Eustacia Cutler, the author of A Thorn in My Pocket, talked about what it was like to raise her daughter in the 50s when autism was not part of the national conversation. She explained how she was thrown off by the lack of connection between herself and her daughter. In her words, "I forgot who I thought I was when I finally faced it. A baby needs a mother in order to know that she is a baby, and a mother needs a baby to know she's a mother.” The loss of connection impacts the entire family—not just the child with autism.  We must go on, but how?

What does it mean to accept autism, or any incurable condition for that matter? How do you avoid getting stuck in it? For starters acceptance does not mean giving up. It does not mean resignation. It does not mean liking the situation you're in. Acceptance does mean the responsibility to do our best, facing each day with courage, and changing what is changeable. We can rebuild and nourish the bonds within our families noticing what is right and what is working at any given moment. It means getting together whether on the floor or at the table and enjoying each other's company and interactions.

Ultimately acceptance is not about making peace or war with autism. Sometimes we may be at peace, and in the blink of an eye we may feel at war with a situation or problem. Learning to look into and face your specific circumstances will help calm any storm of thoughts, emotions, and sensations.  Then we can see our options, and make a reasonable choice. Thus acceptance involves holding everything about our lives gently with balance and a measure of serenity. The love we give to a family member with autism and the love we get back can indeed ground us to the earth and all humanity.

At the end of the show, Dan Gottlieb spoke about “Zorba the Greek” who used  the phrase “full catastrophe” to describe the wide spectrum of life—all the joys,  sorrows, tragedies, and possibilities that open as we live. This complexity and fullness doesn’t take years to experience.  When we learn to pay attention to what is going on, awareness of autism and its impact on us and our family can occur in days, hours, or even minutes. We can be angry, relieved, sad, hopeful, ashamed, scared, and peaceful before we even manage to get dressed and have breakfast in the morning.

What I've learned and what I see families learning on their way to awareness and even acceptance is to respect the diversity of viewpoints they may hold.  We  may each have a unique point of view, and healthy families learn to honor each member individually. Awareness includes the understanding that everyone is not seeing and feeling the same thing at the same time. Our perspectives are different, but they do not have to be the root of conflict and struggle; they can form the strong base of acceptance and family bonds.

Tense uncomfortable feelings among family members often come from longing for things to be different from how they actually are and sometimes even blaming each other for that reality. Most likely we are all doing our best under trying circumstances. Giving everyone the benefit of that doubt, including the family member with autism, that's acceptance in the family.

Will these behaviors ever stop? Getting the big picture of behavior and autism by Robert Naseef, Ph.D.

My son playing in the sand, not interested in people, 1982.

My son playing in the sand, not interested in people, 1982.

My head felt like it was going to explode when my son was diagnosed with autism in the mid-1980s. The diagnosis explained why he was flapping and spinning, but the “A” word stuck in my throat. Some parents, mostly mothers, have told me they were relieved when they finally received an official diagnosis because they knew something was wrong. Regardless of where one fits on the spectrum of reactions, the mind goes fast forward to the future and can't help wondering what will happen:

  • How well will my child be able to communicate
  • Will these behaviors ever go away?
  • What will happen when we are gone?
  • Will she live independently?
  • Can he have an intimate relationship
  • Since autism is invisible and diagnosed through behavioral observations, it is natural to focus on behavior. It’s natural to imagine that if we can make the behavior go away or at least minimize it, then a child may recover. Some of the behaviors of our children on the autism spectrum can also be so disruptive that this becomes our entire family focus. This article will attempt to provide a perspective on these questions which trouble most parents.

    Initially most autism treatment focuses on reducing problem behaviors. Our children need to learn adaptive behaviors to be accepted by others and to bond with their families.   The positive behavior supports approach helps parents and professionals address issues in a relatively new way. Instead of using traditional rewards and punishments, positive behavior supports assumes that all behavior is communication. Parents, teachers, and therapists collaborate to determine what the child is attempting to communicate and teach skills and alternative behaviors to meet the child’s needs.

    What we know from recent research

    Children with autism grow and mature as we all do; the symptoms may change but rarely disappear completely.  Recent research from Deborah Fein and colleagues (2013) shows that a small percentage of children diagnosed with autism does move off the spectrum.  According to the researchers, these children learned to communicate and socialize much like their typically developing peers, but they remained mildly affected by conditions, such as anxiety, depression, or impulsivity, which slightly affected their social functioning. The children who lost their diagnosis had milder symptoms in early childhood, learned to process faces through intensive intervention, and had fewer self-stimulatory or repetitive behaviors.

    Seltzer and colleagues (2000) found a pattern of change from childhood to adolescence and adulthood. 82% improved in communication and social interaction, and 55% showed less repetitive behaviors. These researchers concluded that the symptoms of autism lesson in severity over time and that the best outcomes occur for those with higher IQ scores and better language skills. Overall this shows compelling evidence that the troubling behaviors parents struggle with are likely to change over time.  These research findings are cause for optimism if supported by adequate services in adolescence and adulthood.

    Another team of researchers, Taylor and Seltzer (2010) found overall improvement in autism symptoms and internalized behaviors in young people over a 10 year period. Rates of improvement slowed after leaving school though improvements did seem to continue, just not as much or as quickly. By age 21, young people with autism who do not have an intellectual disability stop receiving services. After that point in time, these individuals improved at a slower rate than individuals with intellectual disability who still had services.  So given what we know today about how children with autism grow and develop, with adequate resources and support, it is realistic to expect progress and lessening behavioral challenges.

    Surviving and Thriving

    In the meantime, while we wait for the hoped for change, how do we live with the uncertainty of what the future holds for family and child? How do we handle the next tantrum or meltdown? What about the struggle for services? Here's the approach that I have developed for myself and that I teach families through my writing, speaking, and counseling:

      Like the weather, your unpleasant feelings will pass.

    Sometimes it may seem that no progress is being made; the child may take 2 steps forward, 1 step back. Over time our children do grow and change, just like everyone. It takes hard work by all involved—families, professionals, and children, teens, and adults living with autism.  Sometimes it helps to remember that we are all doing our best.

    Facing the Future 

    Parents cannot control the outcome for any child, but we can have a full and rewarding relationship with a child growing up with autism. There is solid scientific evidence that individuals with autism continue to develop in adulthood. This makes it reasonable to expect continued slow steady progress just as with typically developing adults. We never stop being parents—our job just slowly changes through the ages and stages.

    Autism in the Family: Getting the Big Picture by Robert Naseef, Ph.D.

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    From the Autism Speaks Blog, 2/1/2013:

    I became a typical father in 1979.  It was a dream come true—those magical first smiles, first steps, first words. Then in 1981, my son stopped talking, stopped playing normally, and began flapping his arms.  From those first red flags of autism until now, I have not stopped experiencing autism and the family—the central theme of my life and work—counseling, teaching, and writing about the impact of autism on families.

    The behavioral challenges of autism are often so consuming that it can be next to impossible to keep the needs of your family in perspective.  From the outside, it may look like the child is the boss or king of the family. Parents often live holding their breath until the next problem or meltdown. The whole family can be immobilized by the unrelenting stress.

    No small wonder that the interventions focus primarily on reducing problem behaviors and promoting learning and development. This necessary, but narrow focus on trying to eliminate troubling symptoms can feel like drowning in quicksand. While in the big picture, your emotional life, your marriage, and your other children are on hold indefinitely.
                Here are some lessons I have been learning and teaching regarding the big picture:

    • Give yourself permission to open up to your thoughts and feelings, which fall along the parents’ spectrum of fear, guilt, depression, anger, and anxiety over the lost dream.  Take a few slow breaths and notice your reactions. Some take the diagnosis in stride, but more commonly it’s an emotional bomb, and it takes time to regain your footing and go on to an uncertain future.  Like the weather, your unpleasant feelings will pass, and open the door to hope and celebration in every little step of developmental progress.

    • Spend some time each day joining your child on the floor having fun, following your child’s lead, and building connection. Your child with autism is still a child and needs more than therapy in her day. Parents cannot control the outcome for any child, but we can restore a full and rewarding relationship with a child growing up with autism. 

    • Try to spend at least a little time each day with your other children or attending even minimally to their unique needs. Typically developing brothers and sisters feel rejection when their sibling doesn’t engage with them, sadness over not having a playmate at times, and sometimes embarrassment outside the home. There are special lessons to be learned from each child.
    • Work to understand the different perspective of your partner. Mothers are consumed by the day-to-day needs of raising a different kind of child.  It’s hard to take a break from needs that do not diminish.  Fathers have a difficult time talking about their feelings especially when unable to fix the problem.  While reports of an 80% divorce rate are unfounded, evidence does support increased stress, anxiety, and depression in men and women.

    • Take care of yourself and your relationship. Appreciate what your partner is doing right. Make time for each other. You need each other more than ever. All children need active, positive, energetic parents. In a very real sense, children cannot thrive if their parents are drowning.  It might be impossible to have “date nights,” but it is conceivable to do little things for each other and together, thus nurturing your relationship.

    This is the big picture of what I believe it takes to survive and thrive with autism in the family. Trying to focus too much on behavior and trying to change someone with autism can block a family’s happiness. This may seem impossible with your child’s behavioral issues, but doing as much as possible to nurture your entire family can make the impact a little easier for all. This does not mean denying real problems. It just means paying attention and cultivating the moments we might overlook or ignore, when problems are absent, such as our children running to us when we get home, or our partner glad to see us after a long day at work or home or both. This is a lifelong search for meaning and connection, while becoming our best selves as family. 

    Speaking from my own experience, I thought I would change my son, but after years of relentless effort I realized that he changed me. He never spoke again, but this is how his autism has spoken to me day by day.

    Press Release: Father Provides Unique Insight into Raising a Son with Autism

    Contact: Christina Davis, Brookes Publishing, 410-337-9580 x120, cdavis@brookespublishing.com 

    ‘Autism in the Family: Caring and Coping Together’ candidly guides families through the many challenges and rewards of raising a child with autism

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    BALTIMORE, MD – January 10, 2013 – How can parents provide the best support for their child with autism and ensure that the whole family’s needs are met? Psychologist and father of an adult son with autism, Robert A. Naseef, Ph.D., combines his personal experiences and professional background to share insight into the complex care of children and families affected by autism in his latest book, Autism in the Family: Caring and Coping Together. Weaving years of clinical practice with first-hand insight, Dr. Naseef helps parents collaborate effectively with professionals and build a strong circle of support with family and friends so that they can provide the best care for their child with special needs. With this book, Dr. Naseef shows parents how to better understand and guide their child’s behavior and development, manage stress, and tackle other challenges such as meltdowns, food sensitivities, sleeping, and toileting.

    Completely revised from his popular book, Special Children, Challenged Parents, “this new book focuses more narrowly and deeply on the challenges that the autism spectrum poses for family life,” explains Dr. Naseef. “Over the last decade, I have traveled around the country and spoken to thousands of people struggling to accept autism and do the best job possible for their families. Seasoned by 24 years of professional practice as a psychologist and integrating advances in research and treatment, I have attempted in Autism in the Family to help families navigate the emotional landscape and the practical roadmap through the lifespan—from early childhood through the school years and adolescence on to adulthood.” The book also offers rare in-depth coverage of the father’s experience in parenting a child with a disability.

    Autism in the Family: Caring and Coping Together has garnered much praise:

    “A comprehensive view of autism across the lifespan… Naseef encourages readers to understand and accept those with ASD, and to ultimately connect, adapt, cope, hope, and flourish,” said Emily Iland, M.A., president of the Autism Society of Los Angeles.

    “Insightful, accurate, and very personal…should be helpful to any parent whose journey includes a child with autism. Naseef has provided important information in a caring and compassionate manner,” explained Kenneth Thurman, Ph.D., professor of special education at Temple University.

    “An excellent resource for families and professionals alike. I am moved and inspired by the stories of Naseef and others that are woven in, and will be sharing this [book] with students, families, and colleagues,” said Helen McCabe, Ph.D., associate professor at Hobart and William Smith Colleges.

    “Fathers often have difficulty expressing their feelings and this book should be required reading for all fathers who have a child with a disability,” said Temple Grandin, author of Thinking in Pictures.

    A warm and down-to-earth guide for parents and an enlightening read for the professionals who work with them, this book is a valuable companion to families as they love and support their child with autism. For more information on Autism in the Family: Caring and Coping Together, and to read an in-depth Q&A on Dr. Naseef’s perspective on how to help families navigate the emotional landscape of autism, visit www.brookespublishing.com/autism-in-the-family.

    About the Author

    Robert A. Naseef, Ph.D. is a psychologist at the Philadelphia-based Alternative Choices, where he specializes in working with families of children with autism and other special needs. Through his experiences as a parent and professional, Robert relates well to both audiences and is a sought after speaker around the country. In 2008, Robert was honored by Variety the Children’s Charity for his outstanding contributions over the past 20 years to the autism community.

    De-Stressing from Holiday Distress by Drs. Cindy Ariel and Robert Naseef

    No matter what tradition you celebrate, holidays are often filled with stress.  There is a lot of pressure to make the holidays perfect and fun while enjoying yourself.  When you add to that the stresses around having a child with special needs it can become even more overwhelming.

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    Everything needs readjusting in your family life and you are left with many strong emotions. It is on you to make warm experiences and wonderful traditions.   It’s important to sit back for a few minutes and reflect. What is it about the holidays that you’ve always enjoyed?  Special foods?  Pretty decorations?  Certain activities?   The gifts?  All of it?  Whatever it is start there. 

    Some things may need modification in order to enjoy the holidays with your child.  For example, if there is a danger of injury on fragile decorations, you may have to put them higher out of reach, or get new ones that are less fragile.  Some special foods may not be able to be served.  These modifications can be disappointing, but if the goal is a nice family holiday, we can adjust.

    Make the demands on yourself realistic. Try to put some limits on how much you do so  that you can feel some of the joy, not only the frustration.  Make sensible lists and work on things one at a time.  Looking at the whole holiday season is less overwhelming if you take it in small pieces.  You may have to manage your expectations to lower your stress level and make the holidays special.

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    For gifts, think about what will put a smile on your child’s face.  Maybe she can’t handle the new games that every other kid is playing, or the current popular book series, or new sports equipment.  But she may be thrilled with a cushy new ball, a big soft beanbag chair to flop on, a favorite food (within dietary constraints), or even an hour away from the noise and confusion to walk outside or go to the playground.  The National Lekotek Center has recommendations on the “Top Ten Things to Consider When Buying Toys for Children with Disabilities” at: http://www.kidsource.com/kidsource/content3/toys.disabilities.html

    These may not be the holidays you dreamed of, but you can still offer your family the love and warmth that really matters.  More than new toys, it is parents’ time and attention that is so exciting and wonderful for children.  In the consumer driven rush this holiday season, let’s not forget what’s really important.  Let’s try to connect with our families and friends and all whose lives we touch.  Let’s enjoy quality time together.  As Ralph Waldo Emerson wrote many years ago, “The only true gift is a portion of thyself.”

                          

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    Just Appreciate Me by Robert Naseef, Ph.D.

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    They've been standing on the brink of divorce. For seven years, they had devoted themselves tirelessly to their son with autism. They were worn out; all the joy had left their lives despite their son having made dramatic progress. Their boy was included in a regular class with supports; something they never dreamed of.

    Their marriage was another story. He thought she no longer cared about their marriage. She thought he never noticed and appreciated what she was doing for their children. They both agreed that their only interaction was about their disagreements. They decided to take a step back from ending their marriage and came back to my office where four years ago they had recovered from their initial devastated response to their son's diagnosis on the autism spectrum.

    The tension they have been living with had become unbearable. They were tired and irritable with each other, but they said that they still loved each other. They decided to give it another shot. They had experienced many good years together, and they wanted to believe they could be happy with each other again. They wanted their children to live under the same roof with both of them, but they couldn't go on being miserable with each other.

    With some guidance, and a neutral mediator, they began talking to each other more kindly. It made a difference. They began sharing responsibilities, and they were less volatile with each other. Nonetheless, Harry couldn't understand why Marianne was not returning his affection. Despite his efforts to repair the marriage, she just wasn't feeling it.

    About a month ago, Marianne's aunt went into hospice care, so she took a three-day weekend to go from Philadelphia to Chicago to be there and say goodbye. Harry stepped up and took their boy to his weekly speech therapy expecting to return to his office after the session. Unfortunately, there was an emergency in the clinic which took time to resolve, and therefore Harry had to miss an important meeting at work. Filling in for his wife, full-time for three days seemed to lead to an epiphany.

    When Marianne returned and they sat with me the next week for their couples’ session, Harry spoke openly and honestly about how frustrated he had been taking care of everything by himself. He had gotten a glimpse of what his wife handles day in and day out in addition to her demanding job. He praised everything she had been doing for years including tolerating his irritability.

    Marianne breathed a sigh of relief. She wiped a tear from her eye, and then put her hand in his. “I just wanted to be appreciated,” she told him, “maybe now we can be closer again. I sure hope so." There was more work to be done in repairing their relationship, but they had turned the corner and began looking forward for the first time in years.

    Denial Versus Get Out of My Way: A Couples’ Struggle by Robert Naseef, Ph.D.

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    On October 11, 2012, at the Autism New Jersey Annual Conference, Rodney Peete spoke candidly to 1000 of us present about how he was in denial after the diagnosis of his son RJ with autism.  His wife, Holly Robinson Peete, quickly countered by saying "I was on Get Out of My Way Avenue!"  She didn't have time to wait for him.  Having a child is special needs clearly impacted them just like many other couples.  It was inspiring to hear them talk about working through this and saving their marriage.  It was also refreshing to hear a man talking about his vulnerable side.

    Rodney Peete played the quarterback position in professional football for 16 years. Holly Robinson Peete has been in show business her whole life.  Her father was the original Gordon on Sesame Street. While Rodney traveled around the country playing professional football, Holly dealt with the struggle to learn everything she could about autism while getting the best services possible for their boy.  Although it took him longer, Rodney was able to enter his son's world once he gave up his dreams about taking his son into the locker room after games.

    When RJ was nine years old and included in a fourth grade classroom, Holly and Rodney went to speak to the class about autism so that his classmates could understand RJ better. Rodney commented that his knees were shaking, and he was never more scared in his life. This came from a man who was used to playing in football stadiums in front of 100,000 people with 300 pound defensive linemen trying to hit him as hard as they could. 

    Admitting our vulnerable feelings is crucial for all men, especially fathers of children with autism. Coming to grips with these difficulties helps us to “get in the game” and do something positive for our children and families.  Rodney had to rethink what it meant to be a father to his boy, since he could not duplicate the fond memories of what his father did with him.  Indeed this is the journey of all parents, but autism makes it more complicated.

    Rodney Peete's book, Not My Boy: A Dad's Journey with Autism, tells the down to earth story of his struggle to accept his boy's autism.  RJ’s sister, Ryan Elizabeth, along with her mother Holly Robinson Peete wrote the children's book, My Brother Charlie.  Through their books and the HollyRod Foundation, the combination of a strong passionate woman and a man who can voice his vulnerabilities make them a role model for couples.