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Posts Tagged ‘siblings’

‘Silencing Ourselves: A Plea for Civility in the ASD Community’ – A Sister’s Response

February 3, 2012 37 comments

This is a guest blog post by Ali Dyer, the Social Media Coordinator at Autism Speaks. Her older brother Jeff has autism.

Last night I stumbled across a blog post that struck a chord by Leigh Merryday who writes a blog called ‘Flappiness Is….’ The post was titled ‘Silencing Ourselves- A Plea for Civility in the ASD Community,’ and I was moved and could relate entirely with the lens in which she viewed the autism community.

I am not always politically correct. I say autistic. For years I would have to correct people when they would say, “Oh yes, artistic, he is good at art.” I make the conscious effort to say, “My brother Jeff has autism,” but sometimes I forget. Guilty.

Of course autism doesn’t define my brother. If anything, Jeffery can be defined by his big heart, beautiful soul, and giving spirit. Saying he is autistic could never take that away from him, I mean no disrespect, to him, or anyone else on the spectrum.

Leigh says, “Parents feeling sadness and worry are encouraged to deny there is any grief associated with it whatsoever.” Guess what? Siblings also can feel a great sadness and worry. Am I at times sad that Jeff has autism? Yes, but not for my own sake, for his. Jeff has challenges that are unfair and it makes me sad that his life has to be more difficult than most. It is sad to me that he can’t go out without being stared at; or that he can’t carry on a typical conversation, struggling to have his voice heard.

Do I worry about him? Hell yes. When Jeff moved into his group home, a wonderful and difficult experience for our family, I was overcome with such anxiety because I was so unsure of how it would turn out. I worry what will happen when my parents are no longer around. Can my oldest brother Tommy and I be there for him in the way that he needs? I can’t be sure, but I know that we’ll try our best.

When I was young and a believer in Santa Claus, I asked for Jeff to speak. To this day, I would give anything to have Jeff ‘cured.’  Should I, and others that feel the same be attacked for that? I would never judge anyone for their stance on the topic.What do we accomplish by going at each other on this issue? As Leigh points out, “by jumping on people for their thoughts and decisions about raising their autistic kids, all we are doing is silencing them.”

I am thankful and inspired by the neurodiversity movement. I think that self-advocates have made incredible strides to raise awareness and speak for those who can’t. I have made connections and friendships with many of these folks who work hard for the greater good of the autism community.

Jeff was diagnosed in 1987. My parents were scared and overwhelmed. Autism? What’s that? When we found other families who had sons with autism, we clung, and held on for dear life. These friends soon became family.

We didn’t have the internet back then, and sometimes we think it may have been a good thing. We had to stick together and hope for the best, working towards the goal of giving my brother the most productive and enriched life we could. Today, there are ‘support’ forums and communities all over the internet. Often times, these are breeding grounds for knock down, drag out fights. People can hide behind these online personas and say whatever they want, while others are able to make connections and that become lifelines. Amazing friendships and bonds exist – I wish there was more of that. It is a blessing and a curse.

Until coming to work at Autism Speaks, I had no clue of the different segments in the autism community. I was absolutely shocked by it. Clearly we were just living in our own ‘autism bubble,’ but I don’t think it was the worst thing. Why can’t we just support and respect each other?

In fact, I never in a million years thought that I would be working at Autism Speaks. I thought that the only way to work in the field of autism was to be a teacher, therapist, or scientist. I wasn’t anti-Autism Speaks, but at the time of inception, the mission was geared to diagnosis and early interventions. We had been there and done that!

But joining Autism Speaks has been an incredible blessing. I am thrilled by the way the organization has evolved and where it is looking to go. The development of the Transition Tool Kit and Housing and Residential Supports Tool Kit are wonderful and that is only the beginning! I am also incredibly lucky to work side by side with people that really want to make life better for ALL people affected by autism. My coworkers have supported me, and in turn my family in ways I never could have imagined.

This past Fall my family along with the other families in Jeff’s group home, participated in a local Walk Now for Autism Speaks. It was with Jeff’s lead that we signed up and I have never been so proud to walk next to someone in all my life.

So there it is. Laid out for all to see. I hope that the autism community can come together for good and respect each other as time goes forth.

In the meantime, I will continue to walk side-by-side with Jeff never losing sight of the past and all that we’ve been through. But I will look optimistically to the future, because Jeff makes all of those who know him better people. He will surely leave this world a much brighter place, for the truth is, he already has.


Click here to download the Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

The Best of Both Worlds

January 5, 2012 51 comments

This is a guest post by Allison Rogers.  Allison is a lawyer in private practice in Washington D.C. and volunteers actively with Autism Speaks in their housing policy initiative.  She has a younger brother, Adam, who has autism.

For as long as I remember I would ask my Mom these questions. Is Adam going to live at home forever? No. Will he live with me when I am older? He will have a house of his own one day. When’s that going to be? I don’t know, sometime after he graduates high school. Who’s he going to live with? Ideally Jeff and Joe, maybe a couple of other boys, and a support staff.

I will be completely honest and admit that I had no role in my brother’s summer of 2010 move into a group home. Throughout the years, my Mom promised us, without exception, that Adam would have a home of his own one day. I think this was her way of protecting all of her children and not just the one who needs the most protection. She took on the responsibility, not only because she was in the best position as a mother to advocate on his behalf, but because she did not want to leave this huge responsibility of mapping my brother’s future to her daughters. As the matriarch of the family she set the tone for familial relationships. Stacey and I, as sisters, must love and support Adam, but Shari, as the Mom, will make the big decisions.

Fast Forward to June 2010. I am locked in the basement of the law library studying for the bar exam, receiving texts from Mom. He’s moved out. Are you ok? I feel weird. Do you need to talk? Ok.

We talked. I did my best to assure her it was a transition, transitions are always hard, and once she gets used to the new living situation both she and Adam would be better off. I tried to comfort her. I remember saying, “it’s like when I went off to college; it’s like when Stacey went off to college. It’s a huge, but completely normal adjustment. And most importantly, he’s FIVE MILES AWAY.” And that’s how, just for a moment, the roles switched and I became the protective one, but not of Adam, of my Mom.

August 2010 I made my first visit to Adam’s home. The descriptions I heard that the house is huge; the house is beautiful; the house is individualized to your brother’s and his housemates’ needs were not inaccurate. The house is huge. The house is beautiful. The house is Adam. Adam lives with four other boys. Two of the boys, Jeff and Joe, Adam grew up with. They each have their own rooms, reflecting their personalities, and their bedroom doors are adorned with the first letter of their names. They have ample living and dining space, a back and front yard, a television and even a Wii.

I love Adam and his new independence. Of course, the house did not cure him. He’s still Adam. He still has his moods and he will still have his nights where he stays up all night shouting to whoever will listen. He still repeats words, sometimes hundreds of times, and he will still rip his shirts and blankets for no apparent reason. Yet he is happy. He is happy with his house. He is happy with his friends. He is happy to come home to my parents’ house and he is happy when we go to the house to visit him. I see pride when he shows me his room, points to the family pictures on his bedroom wall, shows me his Wii bowling skills and sets the dining room table.

I can honestly say Adam moving into a group home has given our family the best of both worlds. He has independence. My parents have their independence. Yet we are five miles and ten minutes away from family time.

Five Benefits of Growing Up With an Autistic Sibling

December 15, 2011 4 comments

Dana Fialco collaborated with her sister Tara, who has autism, and their parents to create the “Starabella” three-book audio series. Visit her online at www.starabella.com.

Every sibling relationship is unique, but having an autistic child in a family can impact the entire family dynamic. While much attention is paid to the challenges and difficulties faced by parents and siblings of autistic children, growing up with an autistic sibling also offers many advantages and hidden treasures that can help shape an individual’s life and character. Here are five benefits of growing up with an autistic sibling:

1. Perception. Having an autistic sibling means growing up alongside someone who sees the world in a unique, individual way – a way that is often different from the mainstream population. It also means living day-to-day with someone who behaves somewhat-to-very differently than the general population. The sibling without autism learns very early on that the world we live in is not black and white; there is not necessarily a right and wrong way to do all things. With solid parental guidance, siblings come to learn that individuality is not scary or wrong, but valued and beneficial to society. The neuro-typical siblings go into adult life with open minds and the ability to see the world from many views. Not only does this shape an individual with compassion, empathy, and acceptance of differences, but it also inspires innovation and creativity. The siblings can become real thinkers who see beyond face value, as well as diplomats who can navigate and reconcile conflicting points of view.

2. Perspective. Growing up with an autistic sibling means watching your sibling face each day with more courage and strength than most of us can fathom. Whether facing ridicule and cruelty from others or simply trying to get by in a world that was not built to accommodate their needs and way of thinking, kids with autism experience constant challenges. It’s difficult to witness this on a daily basis and not grow up with great perspective about what actually constitutes a problem. Granted, a pitfall of some siblings is to decide that their own real problems or feelings do not warrant attention or concern. However, with maturity and proper guidance from caring adults, the siblings can grow into adults who can balance experiencing their feelings with not overreacting to trivialities or falling prey to self-pity. This perspective allows them to remain calm during difficult situations, and to be thoughtful rather than reactionary.

3. Leadership. Siblings of autistic children often have to mature very early – arguably, earlier than should be required. By necessity, siblings often must assist their parents in helping, providing care, and teaching. These households can be chaotic, and siblings must develop a real inner strength to deal with the chaos, emotions, and frequent uncertainty. In families, siblings often collaborate – working on projects, carrying out chores, or playing together. Siblings often see each other’s capabilities and way of thinking from a different perspective than their parents or teachers. Whether older or younger, the non-autistic siblings naturally gravitate to leadership roles in the sibling relationship. They learn to stand up for their sibling to others, and advocate for their sibling’s potential to be seen and met with proper challenges for growth and success. Whereas this can present difficulty for some, in the end, it shapes strong adults with tremendous potential for leadership. They can grow into leaders who are comfortable navigating uncertainty and still delivering results; they become comfortable leading and motivating others, and they learn to see and foster the potential in those they lead. They see differences in working styles and ways of thinking as welcome attributes rather than frightening, difficult to manage, or unacceptable. The siblings become strong, compassionate leaders who are natural innovators, protectors, and advocates.

4. Courage. By necessity, growing up with an autistic sibling teaches a child to have the courage to stand out. Venturing into society with someone who does not necessarily conform or can have unfiltered reactions means there will be moments when the entire family stands out, whether they like it or not. For children and teenagers this can sometimes cause embarrassment. However, it is an important part of their development that will yield rewards their entire lives. It helps the siblings learn to be themselves and express their ideas, and not be swayed by the crowd. It helps them see public perception for what it is, and to know when to take or leave an outside judgment or opinion. A lifetime of developing strength and compassion provides the courage and pride to face the world head-on.

5. Creativity. Many of the other listed benefits have underlying tones of creativity, or produce creativity as a byproduct of the other attributes achieved. Siblings often have a unique way of communicating – sometimes even developing a shorthand or symbiotic relationship. Learning to communicate effectively with an autistic sibling takes a great deal of creativity. Autism manifests differently in each person, and there is a broad spectrum. However, communication and social awareness are almost always affected in some way. Siblings grow up learning how to organically communicate, reach, and connect with their sibling. Because those with autism often have unique and varied ways of thinking and seeing the world, their neuro-typical siblings often benefit from a very creative point of view. Simply being so intimately engaged with a person lacking the tools to benefit from a very creative point of view. Simply being so intimately engaged with a person lacking the tools to temper individuality through conformity stretches the mind and creativity of a sibling. Many people with autism also have some extraordinary abilities. Not all are creative, but some do have creative talent, be it visual arts, music, writing, or simply expressing a worldview that is unique and insightful. An added benefit to creativity is when a sibling grows up in a house filled with this art. Even a non-creative interest exposes the siblings to aspects of the world that they would not normally delve into, and can feed creativity. If the siblings happens to share a creative interest, both or all the siblings’ creativity and awareness grows together. Some siblings even apply their creativity to solving scientific and sociological puzzles, including the puzzle of autism.

Of course, all family dynamics and ways of growing up present their own challenges as well as benefits. Siblings of autistic children naturally develop the tools to see the challenges thrown their way in life for the gifts they can be. They develop the strength and creativity to use those gifts towards compassionate, collaborative, individualized success.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Family Services Office Hours – 11.30.11

December 1, 2011 2 comments
3:02
Hello everyone and welcome to this week’s Office Hours!
3:03
The Autism Response Team is here and ready to answer your questions and provide you with some great resources!
3:08
Submit A Service
Do you have a service you’d like to add to the Autism Speaks Resource Guide? Click here to complete the submission form!
http://www.autismspeaks.org/family-services/resource-guide
3:09
Comment From Bridget

My granddaughter who I raise has P.D.D. N.O S. she screams alot and has started to throw things and kick. Her schedual has be out of wack this week is a strong schedual important for her behavior problems?

3:11
Hello Bridget
YES!! Many children with autism depend on a routine schedule that is predictable. but its also important to mix and vary activities in order for the person to get used to variety of activities.
3:12
Also Bridget – we have recently published a grandparent tool kit
3:12
Comment From Heidi

Hello, my son is high functioning ASD and wiil be getting an iPad soon. I have been looking at various blogs, articles and sites for apps that he can use but was wondering if you have any recommendations? Looking mostly for eye contact, social, and speech. Thanks!

3:12
Hi Heidi! We have a great list of Apps for Autism in our Resource Library. These are apps that have been submitted to us by families or professionals who have found them very helpful! In addition, at the bottom of the page, there are links to many other lists of app recommendations from other autism organizations.http://www.autismspeaks.org/family-services/resource-library/autism-apps
3:13
Comment From amber

my son is 13 and high functioning but still cannot tie his shoes or place on right feet

3:17
Hi Amber – Your son is right at the start of the Transition age- and you are absolutely right to make sure he can complete his self care and dressing himself independently. I would suggest making “shoe tying” a objective in your son’s IEP. There are many different instructional methods to teach these self care skills, it will be important to determine the best one to teach your son.
3:17
Amber- In addition we have have recently published a Transition Tool kit.
3:18
Comment From Bobbie

I am not a parent but I am a psychology major. I am planning to complete my ABA certification in the next two years. I am currently working with Autistic children and their families through local groups and organizations. Are there any “good” or “proven” resource sites/books that you recommend that I use in order to gain information and useful methods for working with these individuals.

3:18
Hi Bobbie. That is great to hear you are working with children with autism. We need more people like you! We do not endorse any very specific resources, however we have lists of books and tools for professionals on our website that people have submitted to us because they have found them helpful in working with children with autism. You can check out these books/tools at the 2 links below: http://www.autismspeaks.org/family-services/resource-library/books#professionalshttp://www.autismspeaks.org/family-services/resource-library/tools-professionals
3:18
Comment From Jennifer S

First off. Thank you for taking the time to help!! Heres my question. My 4 year old son has autism. We are having a really hard time potty training. He will use the potty but ONLY IF he has on NO clothes at all. If he has any article of clothing on he will use the bathroom on himself. We tried going potty every 15 mins, but that still doesn’t help. My husband and I are just out of ideas and really don’t know where to turn to for help..

3:23
Hi Jennifer- Hang in there, all your time and effort will be worthwhile when your child is successfully potty trained! I would suggest you consult with your Pediatrician and your son’s school based team. This is a skill where you need to work with the classroom teacher, to make sure you are both on the same page.
Also, the Autism Treatment Network (ATN) will be publishing a Tool Kit in early 2012 on Potty Training for Individuals with Autism. Check back on their webpage early 2012.
http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use
3:23
We do not endorse any specific materials, but here are 2 books that have been submitted to our Resource Library from families who have found them to be helpful with toilet training: http://www.amazon.com/teach-toileting-revolutionary-approach-disorders/dp/0615255523http://www.amazon.com/gp/product/1932565493/ref=as_li_ss_tl?ie=UTF8&tag=autispea-20&linkCode=as2&camp=217145&creative=399369&creativeASIN=1932565493
3:24
Comment From Susan

My daughter takes Vyvanse and Celexa for the past year. I do think they help her but how long is it safe or recommended to remain medicated?

3:24
Hi Susan. Every child is different and every child responds differently to different medications. Our Autism Treatment Network team just released a Medication Decision Aid Tool Kit called Autism – Should My Child Be Taking Medication for Challenging Behavior?. We have gotten great feedback from this resource, as many of families in the Autism Speaks community have found it to be very helpful!
3:25
Comment From Mary

I have a 12 yo aspergers boy. Yesterday was written up for saying a curse at 13 yo girls who were bothering him – the problem is his perception of the situation – he felt attacked. He wasn’t really wrong (per his teacher) but I do need to disapline for the language. I am running out of disaplinary actions (have restricted everything – nothing makes an impact). What can be utilized to get the message across, and help him to have a better perception of situations?

3:27
Hi Mary- As you know, there is no easy answer to your question. Does your son have support in developing appropriate social skills? I would ask to include a social skill goal in his IEP so that it can be addressed and his progress documented.
3:28
In addition, I would suggest 2 tool kits we have: our Asperger Syndrome/High-Functioning Tool Kithttp://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:28
and our Transition Tool Kit for children with autism transitioning to adulthood: http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit
3:30
Comment From Cassie

My son is 19, HF, and rather obsessed with our football team’s win-loss record. we’ve had 0-11, 0-10. gets mighty upset about it. Is there anything I can do besides redirect? Concerned because next year he’ll be living away from home, need to help him do it himself.

3:33
HI Cassie – Does your son have a counselor or a support person he can discuss these kinds of issues on an ongoing basis. It might be a good idea if he is planning a transition to have someone to talk with about his these upcoming changes.
3:33
Here is a link to our Transition Tool Kit. You can order a copy free of charge on our website: http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit
3:34
Comment From Guest

Hi. Do you have any guidance addressing problem behaviors (ex. hitting, punching, pinching, screaming) in preschool/early school years?

3:37
Hi- I would request an IEP, and ask his Team to address these problem behaviors. It very important to understand the functions of the behaviors and have a detailed plan in place that everyone on the team is in agreement with. Its also important to track the data to make sure the plan is working.
3:37
Here is a link to information about Applied Behavior Analysis from our website: http://www.autismspeaks.org/what-autism/treatment/applied-behavior-analysis-aba There is also a list of other treatments on the left side panel as well.
3:38
If you are looking for resources in your area, we have a list of ABA and other service providers, as well as social skills groups and afterschool programs, in our Resource Guide:www.autismspeaks.org/resource-guide
3:39
We also have a list of books related to teaching increasing social skills and decreasing challenging behavior on the Books page of our Resource Library: http://www.autismspeaks.org/family-services/resource-library/books#socia
3:40
We hope these resources are helpful to you!
3:40
Comment From Guest

my daughter is 7 and has PDD-NOS and tends to repeat phrases a lot. Is there anything that we can do to stop this?

3:42
Hello Guest- I would recommend you request a Speech and Language evaluation, in order to gain a full understanding of your daughter’s echolalia, and a plan to implement. You can locate a Speech and Language professional in our online Resource Guide.
http://www.autismspeaks.org/family-services/resource-guide
3:43
You may also want to include speech therapy in your daughter’s IEP. You can read more about IEP’s and how to get what you and your child need most with them athttp://www.autismspeaks.org/family-services/community-connections/back-to-school
3:44
Comment From debbie

how do I tell if my 15 year old who is failing school by not doing homework and studying is really struggling or is being lazy? I have done everything I can think I can to monitor his grades and homework and he always says he is done.

3:49
HI Debbie- Its sounds like you’ve been working very hard to help your son. I would suggest you get some support by calling an IEP or working together with this teachers. Its important that counselors, teachers, etc., be part of the plan One suggestions might be that he complete his homework at school after school hours. I am including a link to the transition Guide, as a parent you can get a free copy mailed to you.
3:51
Comment From Guest

Hello everyone, my son is 10yrs. HFA . I have not have the talk with him yet of him having autism…how should I start what should i do,,I am afraid of what reaction he might have.

3:52
Hello-IAN – Interactive Autism Network has some great article on Telling Your Child About Autism.http://www.iancommunity.org/cs/articles/telling_a_child_about_his_asd
3:53
In addition we have lots more information about AS/HFA including a section on AS/HFA and your Family in our tool kit:http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:55
Comment From Rechelle

What is a successful way to discipline a child w/Aspergers and HFA? I am not a spanker.

3:58
Dr Tony Attwood, author and therapist, is an expert on this subject–
How do you discipline a child with Asperger’s Syndrome?
http://www.autismsupportnetwork.com/news/how-do-you-discipline-child-aspergers-syndrome-autism-203392344
3:59
Comment From Guest

Any suggestons as to how to explain to my 6yr old that my 4 yr old has autism and he really cant help some of his behaviors. Im just not sure how to start that “talk”.

3:59
Hi Guest. You can read more about disclosing autism to your child and other family members at our IAN site: Telling Your Child. It has a section on telling siblings.http://www.iancommunity.org/cs/articles/telling_a_child_about_his_asd. We have also recently launched a Siblings Tool Kit (in addition to a Parent, Grandparent and Friend Tool Kit) for children ages 6-12 that helps families explain autism to their siblings. You can download the kit for free and view other resources at:http://www.autismspeaks.org/family-services/family-support-tool-kits#siblings. We also have a list of Books for Siblings athttp://www.autismspeaks.org/family-services/resource-library/books#siblings
4:00
Thank you all for joining our Office Hours chat today! If we have not been able to answer your questions, please feel free to call us at 888-AUTISM2 or email us atfamilyservicse@autismspeaks.org.
4:00
We are always happy to help!
4:00
See you next week!

Thank you for judging me…..

November 21, 2011 66 comments

This post is by Rob, the creator and author of the “Lost and Tired” blog and founder of Android4Autism. He is also the 33 year old father of 3 boys on the autism spectrum. Gavin is 11, Elliott is 5 and Emmett John is 3.  He has been with his amazing wife Lizze  for10 years and married for the past 8. You can read his, ‘Thank you for judging me…..’ post here.

If you were to walk into my house at any given time, you would find many things. Among them, the floor covered with toys and the kitchen with a sink full of dirty dishes. If you ventured into the basement you would see a mountain of dirty laundry patiently waiting to be washed. Look around some more and you would find unmade beds, stacks of unpaid bills and even some shut off notices. Some people would look at this and judging me, say that this is a reflection of me as a parent or my ability to take care of my family.

To those people, I say thank you.

Why in the world would I thank someone for saying something like that? The answer is both simple and complex all at the same time. While under different circumstances I would be insulted, hurt or even angered by those judgmental and thoughtless comments. However, I have 3 boys on the autism spectrum and a wife with chronic and often times disabling health issues.

They require ALL of my time and energy. I’m always taking the kids to therapy or to and from school. Working on language skills and even learning and teaching ASL. I make sure they are fed and clothed and as many of their unique sensory needs are met as possible. I deal with meltdowns, nightmares, sleepless nights and I must ensure everyones safety.

I need have priorities and these things are at the very top of the list. That means everything and everyone else will take a back burner.

So when you walk into my house, see the disaster and think that it’s a reflection of me or go so far as to judge me as a parent, I say thank you. I say thank you because it means I’m doing my job. It means my priorities are in the right place. Make no mistake, I would LOVE to have a clean house and be able to pay my bills. However, raising 3 autistic boys is all consuming, especially when one parent has chronic health issues.

There is only so much time in the day and only so much of me to go around. Choices have to be made. If I have to choose between a clean house, perfect credit and my kids, I will pick my kids every single time.

So thank you.

Thank you for judging me.

Thank you for showing for me that I’m doing the right thing.

Thank you for reinforcing that my priorities are in the right place.

Thank you for pointing out that everything that doesn’t really matter in life is still there waiting for my attention because it means those that do, are getting everything I have.

In Their Own Words: Treasure What You Have

November 21, 2011 3 comments

This is a blog post by Lena Rivkin, M.F.A., is an artist and graphologist living in Los Angeles.

Saturday was the Pumpkin Festival.  As my brother and I wandered around looking at the colorful, wildly shaped pumpkins and gourds, I realized that Halloween is the harbinger for the upcoming holiday season.  While other families carve pumpkins and scheme over costume ideas and how to keep the sugar intake to a minimum- my brother will be needlepointing his heart out.  While other families excavate Halloween and holiday decorations from boxes in the attic, Phillip will be obsessively crossing days off of his large collection of calendars.  While we all ramp up our already hectic schedules to include gift ideas, holiday outfits and double-book numerous get-togethers, it is slightly different for those of us who have special-needs family members.

My brother, Phillip, is a severely autistic adult and lives in a group home in North Hills, California, administered by New Horizons, a non-profit organization dedicated to helping adults with developmental disabilities.  Phillip also attends a day school called Tierra Del Sol Foundation. The 9th Annual Fall Festival was a fun way to raise funds for Phillip’s day school.  Among the great line-up of entertainment was Murphy’s Flaw Band- a terrific bluegrass group and gorgeous Aztec dancers that dazzled the eyes and ears.

Phillip really loved looking at the ceramic crafts hand-made by him and his classmates.  It takes a subtle eye to recognize what Phillip really enjoys since he doesn’t speak and willingly goes along with pretty much everything I suggest.  Sometimes I feel like the narrator of his life. “Isn’t this a beautiful mask, Phillip?” or “Phillip, are you ready for lunch?”  He’ll nod a sort of yes to everything I ask him, especially if it relates to food!  Or I can tell by another look in his eye that he appreciates what I am seeing or is ready to see something else.  When I am with Phillip, if I still my inner voice and erase any personal agenda, I can hear him with my eyes and appreciate exactly who he is, not wish him to be who he simply will never be.

The holidays matter to us as well, just a little differently than everyone else.  When you have a sibling who cannot speak, make direct eye contact or give a hug, a Gap Gift Certificate doesn’t quite manage to bridge the gap.  Phillip would be far happier watching me draw a pattern for him to needlepoint or baking cupcakes with him or simply being with him.  For those who are uncomfortable with developmentally delayed people, when it comes to birthdays or holidays, doing nothing appears easier than wondering whether a gift or card would even resonate.

But focusing on what simple acts delight our autistic family members is the kind of holiday gift that money cannot buy.  I have dear friends who make a point of including Phillip in their life because they recognize he is an important part of my life. They mail him postcards regularly from anywhere in the world, even from home, because they know he is thrilled to receive them.   As Edmund Burke said, “Nobody made a greater mistake than he who did nothing because he could only do a little.”  The greatest gestures can also be the smallest.

Holidays nowadays are more likely to resemble high stakes poker games or full impact sporting events or high spending reality shows than simple exchanges of love and friendship. Holidays can be hallmarks of tiny gestures.  In our fast paced and recession-tired current times, holidays prove to be challenging for all families.

Almost every American has grown up with Norman Rockwell’s cheerfully chaotic portraits of large joyful families crowded around a Thanksgiving table.  For many of us, Rockwell’s iconic paintings hold up a beautiful ideal of family life.  As a child, I truly admired Rockwell’s incredibly warm-hearted realistic paintings. As I studied art at UCLA and became an Expressionist painter, I grew to reject Rockwell’s idyllic utopia as sugarcoated and corny.  I’ve come full circle with Rockwell, and now can truly appreciate his extraordinary talent as an illustrator, especially as I now know more about Rockwell’s life.  He grew up in a silent, working class family in New York City, married three times, and struggled with depression.  A telling quote of his was that he painted his happiness but did not live it.  Not that I am trying to celebrate the woes of those who famously appear happy, I merely appreciate knowing that not even Norman Rockwell had the Norman Rockwell fantasy holiday season.

We are all fraught with unfair expectations that every holiday season must be the perfect embodiment of familial bliss. As soon as Halloween is over we brace ourselves for the marketing onslaught in stores and on inundating us with endlessly perfect present suggestions and spectacularly decorated homes, trees and stunning meals. It seems every year the goal gets higher, more expensive and sadly more elusive.  But perhaps we can all jump off the holiday hamster wheel if we simply re-adjust and redefine our values.  Find the gift that isn’t the mall. Look deeper at the act of giving.

For Phillip, the best presents are silent, handmade gestures from the heart.  The best gift I can give my beloved brother is myself; I design the needlepoints he stitches.  Our gift to each other is how we communicate via our creative collaborations.  His endless gift to me is to treasure the present moment. Perhaps determining how best to give of ourselves can be the most rewarding New Year’s Resolution we can make.

No Ribbon for Alexa

November 10, 2011 17 comments

By Paula Scheider 

The Eagle Globe and Anchor, the familiar yellow ribbon…The autism awareness emblem: the iconic blue puzzle piece.

Take a look at my fridge, my wardrobe, our home and you will see these reminders everywhere. Perhaps it is a remnant of my Catholic upbringing but I tend to surround myself with symbols of what is dear to me. I need no reminder that my son Jay is a Marine or that my daughter Fiona has autism but I do need to be reminded at times that we are all part of a larger community who shares my experience. One thing I have learned in my extensive autism education this year is that I am classically NT (neuro-typical)- I need to belong to society.

My daughter Alexa understands this. No surprise, considering that Alexa at 11 years old is one of the most empathetic human beings God created. Empathetic, considerate, open-hearted, giving … and astute.

Witness her observation as she stood in front of the fridge and inventoried the various magnets:

There’s no ribbon for me.

This was said without a shred of self-pity or anger. No jealousy or assigning of guilt. It was as matter of fact as if she had just announced we were out of milk.

There’s no ribbon for me.

I immediately pointed out that the majority of the artwork was in fact, hers and she shrugged. “I know,” was all she said.

“And look how many pictures of you we have,” I stumbled on.

“Mom, I know,” Alexa smiled. “I know you love me and all that. I just noticed there’s no ribbon for kids like me, that’s all.” And the subject was dropped and she went on with her life.

It haunted me for days. Kids like me … are there ribbons for gifted kids? Children with special needs siblings? Middle siblings? Children who handle divorce and multiple households? Finally, I asked her.

“It’s no big deal, Mom” was her answer.
“Really?”
“Yes, really.” Alexa shrugged. “I only mentioned it because I noticed it. It’s not a big thing to me.”

And while I believed her, it was a big deal to me. Ever since Fiona’s diagnosis and Jay’s deployment, I had been conscious of Alexa’s feelings. Here she was, with a hero big brother and a baby sister with autism and I didn’t want her to get lost in the shuffle. Add to that her family dynamic at her father’s home, where she is the big sister to two darling – and new – little brothers. Her bonus mother and I had discussed it and together we worked to make sure that Alexa felt loved and important and unique. Both her father and Eric make special time for her and treat her like a princess. At school, her only transgression seems to be talking too much and trying to take care of everyone. In my heart, I know Alexa is secure and I am grateful.

But this ribbon thing nagged at me. It wasn’t that Alexa felt neglected or unimportant – it was that there was no symbol of her. No symbol of the selflessness she displays. No symbol of the joy she inspires in all of us, no symbol of her frustrations and fears and anger. At a glance, our family appears to have two heroic children when in fact, there are three. And that made me think – there must be so many “kids like me” out there, kids who live with and love a child with special needs, kids who have to worry about a faraway war, kids who feel confused and left out at times and guilty for being normal. Kids who need to love others almost as much as they need to be loved. Kids who love and resent having siblings who are different. Kids like my Alexa.

Alexa’s ribbon would have to be pink, for her boundless love. Pink like the flowers, like the lip gloss she can’t live without, pink like her cheeks after a giggling fit. Pink because while she is one tough cookie, Alexa is all girl.

And it would be purple, because purple is fun and festive and alive. Purple is for royalty and Alexa is our princess. Purple stands out in a crowd. It would be tie-dyed with all different shades of purple and pink because Alexa is funky and stylish and never takes herself too seriously.

And most of all, there would be glitter, because even in a dark night, Alexa sparkles.

Click here to download the Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.

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