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I Have Asperger’s? What’s Asperger’s?

February 28, 2011 55 comments

We wanted to host a follow-up discussion to our previous Parenthood post, ‘The Void a Therapist Can Leave.’ So much happened in the episode, ‘Do Not Sleep with Your Autistic Nephew’s Therapist,’ we figured we couldn’t settle for just one post!

In this clip, Adam and Crosby are arguing. Pushed beyond his limits, Adam reminds Crosby that Gaby is a behavioral aid because he as Asperger’s. Max appears on the stairs, drawn by all the yellling. He has Asperger’s? What’s Asperger’s?

Have you told your child they have an autism spectrum disorder? If you are on the spectrum, how did you come to find out? What was this experience like? Please share with us your story.

The Void a Therapist Can Leave

February 23, 2011 16 comments

This week on Parenthood, Do Not Sleep with Your Autistic Nephew’s Therapist,’ Adam and Kristina are dealt a huge blow when Gaby, Max’s behavioral therapist, gives notice that she can no longer work with them. Adam and Kristina are unaware at the time why she is leaving, but she is visibly upset.

Adam and Kristina are stirring and unsure what do. They are trying to pick up where Gaby left off, but Max is full-blown meltdown mode and it seems there is little hope in site.

Have you experienced the departure of a therapist that affected your family? How did you handle it?

Please stay tuned this week for even more Parenthood discussion. Watch the full episode here, so you will be ready to participate!


Parenthood and Learning to Let Go

February 16, 2011 4 comments

Episode 216: Amazing Andy and His Wonderful World of Bugs gave us a lot to think about this week. We can discuss the pressure and stress of planning a birthday party or even Max’s meltdown when Gaby changes her sticker rule.

But what really struck us, was  Zeek’s transformation in the way he saw Andy, the party planner. He was put off at first by Andy’s behavior. Why was he refusing help and not allowing people to touch his things? Once Adam explains that Andy does in fact has Asperger’s he is impressed. It was eye opening for him to see that he was living an independent life.

For those families who are preparing for the journey from adolescence into adulthood, please check out our Transition Tool Kit. It is an extremely useful resource.

We love the ‘Experts Speaks‘ portion of the ‘Parenthood‘ website, and we think it is important to share with you, especially this week. Here Roy Q. Sanders, M.D., shares his experience in learning to ‘let go’ of his adolescent son.

Our son Frankie will be 15 in May. Not a day goes by without my thinking about his future. The discussion over the past month has been whether he will go to our public high school or not next fall. He is absolutely sure that the time is right for him to “move on.” Yesterday, while we were cleaning the chicken coop (birds are his thing), he told me, in his own peculiar sounding voice, “I know I have autism. I know I am different. I am okay with that.” When I expressed my concerns about his not having the support that he has now at his current school (a specialized program for teenagers with autism) he told me, “You are worrying too much. You need to let it go.”

I had to smile. How many times have I told Frankie “You need to let it go”?

I suppose it’s difficult for any parent to imagine a child all grown up and taking care of him or herself. For those of us with children on the spectrum – and even though we worry about it every day – actually imagining a kid like Frankie all grown up and taking care of himself and being “okay with his autism” is an almost impossible leap of imagination. But we do know that our children will grow up, and we know each of them will live their lives as independently as they are capable with the tools we have given them.

Here’s another thing Frankie told me: “Don’t worry, you have taught me how to do this. You have taught me everything.” Like Adam in this episode, I tend to get so wrapped up in the day-to-day struggles with Frankie that I forget how much he is learning and how much his (and our) hard work are paying off. I often don’t see that we are making real progress in helping him grow into an independent adult with his own life, his own interests, and his own difficulties and quirks – just like Andy the Bug Man.

What I have seen with Frankie’s typical friendships is the same sort of understanding and support that Zeek gives Andy. Frankie’s friends are all ready to jump in and help. They “have his back.” Because they understand Frankie has autism and that he’s “different,” they do what any good friends would do: they help him out, and do what they can to structure the environment to give him room to be himself in all of his wonderful differentness.

For years I have counseled parents, teachers, patients and all sorts of social groups on how to look beyond any disabilities and see the abilities. I have advocated for inclusion. I have challenged us all to work to move beyond acceptance and toward embracing our children’s differences. I have believed (along with Jennie Weiss Block, author of “Copious Hosting: A Theology of Access for People with Disabilities”) that welcoming and embracing people with disabilities brings a theology of liberation – not only to the disabled but to those of us who are “abled” as well. We are all blessed. Now I find myself on the horns of a dilemma. Do I opt for safety, security, nurturing and growth in a very secure environment for the next few years before “allowing” Frankie the path to more complete inclusion… or do I walk with him now into the messiness of life in the “real world” and all the growth, pain and joy that this choice entails? Do I “allow” him to liberate himself while bringing liberation to those around him? Do I restrict his willingness to give himself or the willingness of others to give to him?

In reality, the choice may not be quite so stark, but it sure feels that way. This episode has been a great reminder of not only how our children’s passions can give them a life of working and loving, but also of how painful it can be for parents to “let go” and “allow” their children to risk the pain, but also experience the joy of living their own life.

Written by Roy Q. Sanders, M.D.

Make sure to visit the Parenthood website to watch full episodes!

The Experts Speak – Episode 215: Just Go Home

February 9, 2011 6 comments

For the “Just Go Home,” episode recap, visit here.

Asperger’s syndrome and keeping secrets – isn’t this an oxymoron? In this episode, Max quite naturally (and without malice) reveals a secret that his sister, Haddie, would rather he didn’t. She’s still seeing Alex against her parents’ wishes and has been hiding it, but as Haddie is reminded in this episode, if there’s an individual with Asperger’s syndrome in the family, secrets are non-existent.

This can cause great difficulty, uncomfortable situations and family disputes. When Max lets her secret slip, Haddie is put into a painful situation as Adam and Kristina become surprised and upset with her. Adam and Kristina had already grounded her in a previous episode for keeping secrets, and now Max has let her cat out of the bag. This doesn’t endear Max to Haddie, a problem that siblings of Asperger’s kids struggle with on a daily basis.

Having the ability to hold secrets for any length of time requires trust between individuals and an understanding of others’ needs. This is very difficult for someone on the spectrum. A core feature of autism spectrum disorder is impairment in understanding the social needs of other people, since ASD entails a lack of underlying social understanding and perspective taking.

In order to keep a secret, one needs to know who can be told the information in question and who cannot. This type of problem solving requires abstract reasoning and sorting through a myriad of information bytes at lightning speed, and finally coming to a reasonable solution that works out for all. Those with autism spectrum are concrete thinkers and exceptionally honest – if asked a question, they will respond with the truth, without taking the time to analyze and reflect what should be said and not said. Thus, secrets are hard for them to keep for any length of time.

ASD or not, some secrets should be kept – such as answers to test questions and personal family information. But other secrets are best told, such as those involving criminal activity or anything entailing the exploitation or manipulation of the person with ASD. But how is a person with autism spectrum to know the difference? Some secrets are tiny and have no real consequences; some are major and can endanger life. As siblings grow up, they tell each other many secrets (parents, this should not be a surprise) and as a result, they learn by doing: when to keep secrets, when to reveal them, and what should never be told. But when you add a child with autism spectrum disorder to the mix, typically developing siblings may end up feeling that they can’t trust their own flesh and blood, and the sibling with the disorder is placed in social situations he can’t figured out and that continually get him or her in trouble.

When faced with the type of situation Max finds himself in in this episode, those with ASD will usually tell it like it is – revealing to parents, siblings, their friends, acquaintances and perfect strangers things that shouldn’t be told. This can be either a positive or a negative; how others handle the completely honest statements made by the child with ASD will determine how much trouble will follow. If a very young child, most adults will laugh over the blunder; if an older adolescent or adult, grave consequences can result.

For the child with autism spectrum, this whole business of keeping secrets can be very confusing. Appropriate instruction on secret keeping is both difficult and delicate and should be tackled carefully by parents and teachers. Even after intensive instruction however, making this type of judgment requires split-second analysis of multiple factors, both concrete and humanistic. So don’t be surprised when the kid spills the beans.

Written by Sheila Wagner, M.Ed.

To read this full article visit, “The Experts Speaks,” on the Parenthood website.

Parenthood – “A House Divided”

February 2, 2011 28 comments

On this week’s episode, “A House Divided,” of Parenthood, Zeek takes Max on a camping trip; it’s a Braverman family tradition.While Adam and Kristina are nervous that Max being outside of his normal environment will lead to an unsuccessful trip. They provide a manual for Zeek, but he is extremely offended; he can camp with his own grandson.

Out in the wild, Zeek and Max arrive at the campsite. Zeek asks for Max’s help setting up the tent, but can’t get his attention or help. Zeek tells Max stories about his camping trips with the other Braverman men. When Max asks if they have done everything they were suppose to do, why can’t they go home? When Max doesn’t like Zeek’s answer, he has a full meltdown and Zeek doesn’t know what to do.

While at Julia’s, Zeek calls Adam for help with Max. Adam asks to talk to Max immediately. Zeek confesses to not reading the instruction manual that Kristina provided. Adam lays it on Max and gives him a choice. He can come home, but if he does he’ll miss out on something really special. Ultimately the decision is Max’s to make. When Max tells Zeek they can stay, Zeek is amazed. Adam and Kristina wait at Zeek and Camille’s for their arrival the following morning to welcome them home with open arms. Zeek has a touching moment with Adam tells him what a wonderful boy Max is.

How do you cope when your family doesn’t understand you or your child’s struggles?


Watch the full episode of Parenthood here

Parenthood – “Damage Control”

January 5, 2011 4 comments

On this week’s episode “Damage Control” of Parenthood, Haddie invites her friend Alex over for dinner. When he arrives at Adam and Kristina’s, he is immediately faced with Max’s honesty.

Have you ever had a situation where your child’s blatant honesty has come through? If so, how did you handle it?

Laura Shumaker wrote a post sharing her own version, Don’t Tell Mom the Babysitter’s Fat.

To watch this episode in full click here.

For more on NBC’s ‘Parenthood’ visit here!

Parenthood: The Experts Speak

December 8, 2010 5 comments

This post written by Roy Q. Sanders, M.D. on ‘The Experts Speak‘ portion of NBC’s ‘Parenthood‘ blog. Tune in on Tuesday night at 10/9c.

After our son Frankie was diagnosed with Autism we were devastated. We entered a brand new world of hopes, fears, restrictions, new commitments but mostly fear – his and ours. For many children with Autism Spectrum Disorder/Asperger’s the world is a very scary place. I have been told by older children and adults I know living on the spectrum that things in the world just don’t make sense, especially when they are younger. As a consequence the world can be a very scary place, whether it’s Halloween or not. And it is not only scary for the children living with the spectrum but for the parents as well.

Like Max, our son Frankie was afraid of all sorts of things. He was afraid of elevators, thresholds, haircuts, baths, certain cartoons, certain people, and other completely indiscernible objects and situations. It was like living in a minefield. We were afraid of his reactions, how others would react to him and how we would react. We were often immobilized by our fears that were part and parcel of his fears and rigid, restrictive behavior.

Over time, however, like the Bravermans we learned to grow with Frankie. One instance that comes to mind was when Frankie was about five years old and we were having dinner with some old friends who have an adult daughter on the spectrum (she now lives near them in supported living). I was trying to corral Frankie and keep him out of trouble and out of a “meltdown” when the mom looked straight at me and told me something I will never forget. She said, “You know he has the same right to fail that every other child has.” I just looked at her dumbly until it gradually dawned on me what she was trying to say: That I couldn’t let Frankie’s fears or my fear of Frankie’s fears stop us all from living or stop him from having the chance to learn and grow from his mistakes.

Ever since then I have tried to always follow Frankie’s lead. I let him give us clues about how much he can handle. Granted, there are times when I push him too hard and we have the meltdowns. There are other times when I don’t push enough or I don’t allow him the opportunity to push himself. It is a constant dance – like all of parenting – but it is a dance invitation that you must accept for your child and ultimately for you.

Parents of children diagnosed with Autism Spectrum Disorder/Asperger’s spend a great deal of time hoping and praying their child could be “normal” or more “typical.” Sometimes when the opportunity to allow just that occurs (Max wanting to go trick-or-treating on Halloween, for example) we are so paralyzed by our own fear and our fear of their fears we allow that opportunity to pass. A friend of mine who lives on the spectrum with her son has written a wonderful blog about their experience that’s captured by its quirky title: “Cheeseless Pizza and Other Philosophies of Life.” There is a dance we all dance with our wonderfully “quirky” children and the joy and pain that comes from living on the spectrum. Like the Bravermans, we all have to let our children take the lead and guide us through the minefield of fears – while we do our best to figure out when it is our turn to lead and when it is our turn to follow. We all have the right to fail/fall so we can learn from our mistakes.

To read the full article view here.

 

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