Archive
Vote for the Autism Society SXSW Proposal: “Apps for Autism”
August 20, 2012
By Autism Society of Greater Austin
The Autism Society of Greater Austin has submitted a panel presentation proposal called "Apps for Autism" to two divisions of the South by Southwest (SXSW) Festival.
Now all we have to do is make sure that our proposal is selected – which is where you and all your friends come in!
SXSW gauges interest in proposed topics through its PanelPicker Web page. This forum allows people around the world to read, evaluate, and comment on the proposal ideas. We need your help and support to show that this topic is fresh, current and relevant to the community-at-large.
Our panel will include three members:
1.) A BCBA/educator who has trained professionals, parents and people with autism spectrum disorder (ASD) in using assistive technology;
2.) A representative from Bridging Apps who has written a book on iPad apps;
3.) A moderator.
We would also like to live-stream a person on the autism spectrum who uses a communication device. For background, we'll include video clips from communication software developers and news media.
We believe that the dialogue on PanelPicker will help spread autism awareness. SXSW is a showcase for the arts, technology, education, and innovation. Through this panel, we'll demonstrate that people with autism can participate in mainstream society using technology and that technology can bridge gaps between populations. We hope to take this a step further by initiating discussion on the development and use of technology for and by people with ASD not only for communication and education, but also employment. We will be checking the comments page daily to respond to your comments.
SXSW PanelPicker voting for Interactive opened August 13 and runs through August 31, so please spread the word!
Now quit reading and go vote by following these easy directions:
To vote for our panel:
1. Go to this webpage - http://panelpicker.sxsw.com/ .
2. Click sign in.
3. Click sign up on the next webpage that loads. Follow prompts to enter your email address and a password (which enables you to comment on our proposal)
4. Once you have registered, you will be sent to a welcome page. At this page, please click search/vote. You will now have access to all submitted proposals.
5. The easiest way to find our proposal every time you access this page is to enter “Apps for Autism” or “Autism Society” in the search box. Our proposal is one of 3 listed – click it and you are there!
6. Once you find "Apps for Autism" please click the Like (thumbs up) button on the upper left and make a comment or ask a question of the panelists. You can "like" the proposal as often as you choose – vote early and often!
7. The comments pages will be open to the public until August 31, so vote today, vote again tomorrow and put a reminder on your calendar to vote next week!
Thanks so much for your help! Please leave us a comment to let us know you voted.
An Update on the Fall Autism Summit
August 16, 2012
By Scott Badesch, Autism Society President and Chief Operating Officer
In his opening remarks at our recent national conference, Dr. Jim Ball, Chairman of the Autism Society, issued a call for a summit to bring together national organizations involved in advancing the independence, autonomy, self-sufficiency and dignity of each person living with autism. The purpose for the summit is to address a growing concern within the autism community: infighting is a too-common reality that diminishes our collective efforts to advance our collective work.
We all want a more effective and responsive government support system, but we also have to deal with the reality of a government that has less money and will likely need to cut programs. It makes good sense for us to bring forth a collective agenda to assist government on how to address the financial aspects of supportive services. If we don’t present a common message, we confuse government officials with differing positions and singular agendas. In the end, we are more easily dismissed or left out of decisions all together.
There are going to be areas where we all don’t agree. Not only is that okay, it’s a good thing. That is why there are various organizations engaged in national advocacy efforts. But there are some underlying principles where we do agree. We want to find those topics where we can gain consensus and a shared multi-disability vision that will impact individuals of all ages. We can certainly find commonality in the need for increased services for adults and more responsive and accountable public school systems. Individuals with developmental disabilities are denied their civil rights by the very systems put in place to support them. Surely we can find common ground here that positions us at the table where decisions are made – not making us the “beneficiaries” of decisions made without the input of groups representing self-advocates, families and others affected by autism.
As a leading government official told me recently that as long as our infighting continues little will be done to help our community of individuals affected by autism. Other “industry” groups agree to disagree on a lot, but they at least agree on certain values, efforts, and advocacy positions that are in the best interest of all they serve. This is why the Autism Society decided to call for a national summit. We need to meet and be inclusive rather than exclusive. We need to develop a few national goals that each organization agrees to support. To do anything less is simply maintaining the status quo, which, if we are really honest, needs to be greatly improved.
An Update on the Fall Autism Summit
August 16, 2012
By Scott Badesch, Autism Society President and Chief Operating Officer
In his opening remarks at our recent national conference, Dr. Jim Ball, Chairman of the Autism Society, issued a call for a summit to bring together national organizations involved in advancing the independence, autonomy, self-sufficiency and dignity of each person living with autism. The purpose for the summit is to address a growing concern within the autism community: infighting is a too-common reality that diminishes our collective efforts to advance our collective work.
We all want a more effective and responsive government support system, but we also have to deal with the reality of a government that has less money and will likely need to cut programs. It makes good sense for us to bring forth a collective agenda to assist government on how to address the financial aspects of supportive services. If we don’t present a common message, we confuse government officials with differing positions and singular agendas. In the end, we are more easily dismissed or left out of decisions all together.
There are going to be areas where we all don’t agree. Not only is that okay, it’s a good thing. That is why there are various organizations engaged in national advocacy efforts. But there are some underlying principles where we do agree. We want to find those topics where we can gain consensus and a shared multi-disability vision that will impact individuals of all ages. We can certainly find commonality in the need for increased services for adults and more responsive and accountable public school systems. Individuals with developmental disabilities are denied their civil rights by the very systems put in place to support them. Surely we can find common ground here that positions us at the table where decisions are made – not making us the “beneficiaries” of decisions made without the input of groups representing self-advocates, families and others affected by autism.
As a leading government official told me recently that as long as our infighting continues little will be done to help our community of individuals affected by autism. Other “industry” groups agree to disagree on a lot, but they at least agree on certain values, efforts, and advocacy positions that are in the best interest of all they serve. This is why the Autism Society decided to call for a national summit. We need to meet and be inclusive rather than exclusive. We need to develop a few national goals that each organization agrees to support. To do anything less is simply maintaining the status quo, which, if we are really honest, needs to be greatly improved.
Topics:Events, Living with Autism, News
Stuck Windows, Stuck Minds
August 9, 2012
By Dan Olawski
Back when I was a kid, the driver's-side power window on the family car stopped working correctly. My father had the inclination to try to fix it by himself. Well, for the longest time the inside door panel, along with a few other "extra parts," were kept in the trunk while the window remained broken.
I don't remember what the result was of that experiment in auto healing. I think we probably got rid of the car before the window ever worked again. But I took a long-lasting impression from that whole situation: Don't try to fix things if you aren't 100% sure of what you're doing. But if you do try…never give up before you reach the result you’re looking for.
I've been thinking a lot along those lines recently in relation to treating and healing my son Mikey's autism. I think it was the end of the school year and the inevitable review of the good, bad, and unfulfilled potential of the past few months that has turned me, quite honestly, into an emotional mess where Mikey's well-being is concerned. (As an example, Coldplay’s song, “Fix You,” especially the lines “High up above or down below/When you're too in love to let it go/But if you never try you'll never know/Just what you're worth” had me in uncontrollable tears the other day).
My column this month has been inspired by the sadness, doubt, and frustration I'm feeling and is not as upbeat, optimistic, and relatable as the pieces I usually write for the Autism Society’s blog. The genesis of these new feelings is my family's consideration of a new alternative treatment plan for Mikey and the lingering question: “How do you know if what you’re doing is helping or harming your child?”
As the song says, “…if you never try you’ll never know.” Is it always better to do something, than nothing? I think as autism parents we’re often on our own in this dilemma and it's that uncertainty and fear of the unknown that really makes me feel the need for guidance I can trust.
My struggle is this: On the one hand, I want to do anything I can to help Mikey. But on the other hand, I don’t want to do anything that could possibly hurt him. Because those two things can potentially clash, and because I love him so much, I tend to get paralyzed with making decisions on different approaches to treatments. It also doesn’t help that the Jersey Boy in me has that ingrown distrust of most things that sound like they’re being touted by a snake oil salesman ("Yeah, right! Get outta here!")
Unlike the power window situation in my dad’s car, I don’t want to attempt a “fix” with Mikey unless I’m really sure of what I’m doing. Mikey doesn’t have any spare parts I can ignore if something goes wrong, and once I make up my mind I want to see it through to the end. But, through all of this recent contemplation I have realized one thing: I have to give my dad credit for not being afraid to try to fix the window.
So, I’m also going to try. I'm going to be open-minded and work with my wife on this decision. I admit it…it’s tough for me. But I know I’m going to feel frustrated whether we go with this treatment or not. The doubt will always be there until I see something that proves itself to me. So, for now, I’m pushing the Jersey Boy out of the way, doing my research, and focusing on what good may come in helping Mikey to be happy, healthy, and function at his highest level throughout his life.
Dan Olawski blogs about fatherhood and his son Mikey for the Autism Society. He lives with his family on Long Island, N.Y., where he works as a writer/editor. His time is spent following Mikey with a vacuum cleaner, watching his beloved New York Yankees and continuing his pursuit of the perfect chocolate chip cookie. He can be contacted at dantheeditorman@gmail.com.
Topics:Living with Autism
Getting Up
Night duty seems to be back.
June 29, 2012
By Jeff Stimpson
About 3 a.m. on many nights I hear my son Alex chortling and talking in his bedroom or in the living room, sometimes even singing. In my bed, I lift my heavy head and crane over Jill to see if there’s a bar of bright yellow shining under our bedroom door. Many nights, there is.
Alex got up in the night a lot when he was younger, and for a sleepless while Jill and I split what we termed “Night Duty.” Who would get up in the middle of the night for Alex and who would get up early in the morning for Alex? We switched. (You do it! … I did it last night! You just always forget – you are so SELFISH!)
Night duty seems to be back. Several times Alex (13 years old and PDD-NOS) has woken Ned up by rocking in bed, making the whole Ikea structure creak and weakening the joints held together with little more than a twist of the Allen Wrench. The rocking – back and forth, back and forth, creak creak creak!
For a long stretch of the Night Duty phase, I admit that we left Alex on his own in the living room in the middle of the night. Then last summer he started leaving the apartment, and now I can’t think of sleeping when that ribbon shines under our bedroom door.
I wake up around 3 and find Alex on the couch, munching pretzels. Pretzel breath at 3 a.m...
“Alex, go back to bed!” He does, darting into the shadows.
"Head down, Alex!" I see it go down in the dark. I head to the bathroom and then weave back to back past the shadows of the dining room table and chairs toward the bedroom. He always pulls this around 4:30. By the time I wrestle him to bed and convince him to stop rocking, and by the time I can wiggle my toes down there in my own sheets and drown my own thoughts with exhaustion, it’s 0600 and time for the alarm.
Then one morning at 4:30 a.m., for some reason, it hit me. “Alex, do you want to get up now?”
He laughed and laughed and laughed. I tugged him to the bathroom. His laughter evaporated when I clicked on the light. “Alex, we’re getting up now. You want to be up, we’re up!”
“Back to bed!” said Alex.
“No, Alex, you’re up now...”
“Back to bed!”
“Fine,” I told him. “Fine. Go back to bed or we’re getting up!”
Down went his head. I returned to bed. I listened and listened as 0600 neared. I didn’t get back to sleep.
Jeff Stimpson lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, The Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”
Topics:Living with Autism
The Next Journey
June 28, 2012
By Lee Passehl
I have raced remote control cars since I was 11. My life’s goal was winning the Tamiya North American Finals, a national championship race located in Aliso Viejo, CA. I had tried since 1998, but always came up short due to the fact that the surface I would practice on was indoors on a carpet track located in Wisconsin. When I would travel to California to race at the Tamiya North American Finals every August-September, the Tamiya America raceway was an outdoor asphalt track, a surface I had little experience running on. The local racers would always have an advantage and beat me due to the fact that they raced on this track year-round. They knew how to drive the layout of the track and how to set their car up for the asphalt surface.
(Alongside my dad in Memphis Tamiya Championship Series race in 100 degree weather in 1997.)
In August of 2008, my parents retired and my family moved to southern California, not far from the race track where the Tamiya North American Finals are held. With only five days of practice and preparation, I managed to take second place – narrowly missing the championship. If my dad and I had more time to practice, we may have won the championship.
The following year Dad and I practiced vigorously, preparing our car and ourselves to win it all. The dream became a reality in August 2009 when I crossed the finish line first in the GT2 class and earned my ticket to the Tamiya World Championship in Shizuoka City, Japan.
(Me on the victory podium at the 2009 Tamiya North American Finals.)
I practiced hard for the world championships and wanted to make sure that I came out victorious. Unfortunately, during the practice and qualifying rounds, my motor was not as fast as the competition. I requested to change my motor, but was told I could not do so. I later found out [due to a translation error] that I could have. As a result I finished 14th out of 15 racers.
(Group picture of the “GT2400” class which I competed in. I am the second person to the left in the back row with the white hat.)
Even though I didn’t do as well at the world championship that I would have liked, I am happy that I experienced the event and traveled to Japan. However, there was the feeling that my dad and I worked so hard all these years to achieve my goal only to have a poor showing because of a language barrier.
In the Tamiya Championship Series, once you win the North American Finals, you can no longer compete for the trip to Japan. You only get one opportunity. My chance of going back to Japan and the world championships were over.
From December 2009 to January 2012, my dad and I raced in many different RC car classes. I started running nitro powered cars in 2011 for a year traveling all over the west coast states to race.
(Shaw Takahashi with myself and a 5th Scale gasoline powered radio control car)
On January 10, 2012, my dad got an email informing us that the Tamiya Championship Series was now allowing past champions compete for the trip to the world championships once again. It would be in the GT-1 class, which is the fastest class for the most elite drivers in the series. Because of this new rule, I now have a new goal in life. Actually…three goals.
My first goal is to once again win the Tamiya North American Finals and return to the World Championships and do much better. But more importantly, my second goal is to learn how to work and setup my own car. I realize my dad is not going to be there with me setting up my car for the rest of my life. One day I won’t be able to depend on him to make the setup adjustments to my car. I’ll have to learn how to take care of my car and my equipment on my own.
I knew when I was younger that I couldn’t race by myself and I needed my dad for help. I was afraid of independence. Now I am more self-confident in my skills and it has motivated me to do this sport on my own. I have been going to Tamiya America raceway by myself for the past six months. My dad has come along with me a couple times this year, but I find that most of the time, I am able to work on my cars without his help. This has given me the confidence to move forward on my road to independence, both on the track and in the rest of my life. I also have to work at keeping my emotions under control. This is a new source of stress for me and all my worst habits begin to emerge. Maintaining my self-control is a hidden accomplishment just for me.
(A picture of my car that I work on, The Tamiya 417X. It’s electric powered.)
When I was younger, I wanted a lot of help from the other racers and preferred the easy way out. I also wasn’t very skilled at fixing a part on the car and it would make matters worse by either putting the part on wrong and then something gets bentor falls off. My hands would shake a lot when I was inserting the wrench into the screw or trying to insert a part. If I had to work on the car all by myself and replace every single part, I would get very overwhelmed. It was like trying to perform brain surgery. It just was too hard for me to complete the task and I would get really frustrated to the point where I would just give up and wait for my father to complete the task. But now I realize that I must find a way through the frustration and set small goals for myself so I don’t get discouraged.
I am now able to go to college by myself and my study skills have improved. Previously, I had an instructional aide with me in class. I now see a tutor, but she does not go with me to class. My attention span has also improved, as well as my fine motor skills when I am grasping the wrench. This has helped me learn how to work on my car by myself. I also don’t get as frustrated as easily and I don’t turn to dad as much for help. But I still need him for certain tasks, such as filling the shocks with oil, programing and wiring the electronics, gluing tires, and working on transmission parts. These tasks require steady hands and I’m not quite there yet.
My last goal is to learn the Japanese language. I have been taking classes at a local community college. I have gained enough understanding to hold brief conversations with online friends and practice as much as I can with many Japanese-speaking acquaintances here in SoCal. I love living here!
Topics:Living with Autism
PB&J: The Secret to Being a Great Autism Dad
June 18, 2012
By Dan Olawski
Yes, it’s true…the secret to being a great Autism Dad is PB&J. (Wait, why are you opening the cupboard? Put the peanut butter back. Yes, and the jelly.)
No, no, you won’t be needing any bread for this.
The PB&J I’m talking about is much different…and less sticky. PB&J equals: Patience, Being There, & Joy. Okay, okay, I know I cheated a little with the “B” meaning Being There, but let’s just call it poetic license. Heh, heh.
Patience
I’ve mentioned before (http://www.autism-society.org/blog/patience-strong-will.html) the importance of patience for an autism parent, but I think it’s even more important for Autism Dads. Men are usually considered to be the more impatient parent (“Just wait till your father gets home!”), but whether that’s a curse of our genes or a gender stereotype, I believe we just need to work a little harder to find that much-needed virtue.
And, let me be clear, the patience I’m talking about is well beyond what outsiders would imagine. No, for those of us in the Autism Dads Club, I’m talking about the type of patience usually attributed to a saint. Saint Autism Dad needs to take a deep breath when his child throws his food on the floor for the fifth time in a row. He needs to turn the other cheek when his child’s humming stim rivals that of a thousand bees in his ear. He must speak softly and calmly when his actual urge is to scream and yell. I know your struggle, Autism Dads, but, if we try hard enough, perhaps one day we will all be canonized.
Being there
I’ve come to learn in life that being there is half of the secret to living. But I don’t just mean showing up, it’s what you do while you’re there. An Autism Dad needs to do everything a father of a typically developing child would do…and then multiply that by a hundred.
I know that my son, Mikey, loves the times we do the usual father-son things like tickle-fights or going to the park. But I believe deep down he truly appreciates the times I’ve been with him at the doctor or did a parent training session with him at his school. It was quite evident to me that Mikey expects me to “be there” for him when, due to my recent back injury, I was unable to do all those things with him and his behavior suffered because of it. As my back has healed, so too has my relationship with Mikey.
Joy
Joy might, at first, seem like a difficult concept for an Autism Dad to comprehend. But joy is simply an extreme happiness. A happiness that takes great pleasure in even the littlest of things.
As Autism Dads we have many great opportunities to be joyous. Our children face a daily battle at times just getting through the day…each time they overcome those challenges is a time to be filled with joy. Perhaps your child has just beaten a severe stim, or tried eating a new food, or successfully used the potty.Let yourself see the joy in that, Autism Dad. I know my heart overflows on those rare times that Mikey looks me straight in the eye and says, “Daddy.” You don’t need to look very far for a joyful occasion.
So, Autism Dads, you are all wonderful, strong, loving parents and your children appreciate you. But if you’re ever feeling at a loss for how to cope, just reach for the PB&J. Nope, not the sandwich, this PB&J is far more filling and satisfying.
Dan Olawski blogs about fatherhood and his son Mikey for the Autism Society. He lives with his family on Long Island, N.Y., where he works as a writer/editor. His time is spent following Mikey with a vacuum cleaner, watching his beloved New York Yankees and continuing his pursuit of the perfect chocolate chip cookie. He can be contacted at dantheeditorman@gmail.com.
Topics:Living with Autism
One Day is Not Enough
May 30, 2012
By Dan Olawski
For about two years, I was a stay-at-home dad. I cared for my son Mikey in all the traditional ways: I dressed him, fed him, took him to school and back, and played with him. But the one thing I could never do for him was to be his mother.
The term mother, and all the good that goes with that, can spark many loving images in our minds. And autism moms are even more incredible with their focused dedication and devout love and compassion. Their actions and experiences should truly be celebrated and recognized.
In honor of this month's Mother's Day holiday, I spoke to a few autism moms I know (Kristine V., Tara G., Christine M., and my wife, Lynne). I asked them about their experiences with autism and any advice they might have for new autism moms. What follows is something I could never give you on my own: autism through a mother's eyes.
A little background on these amazing moms: All of their children were either Mikey’s classmates or attended the developmental school where he spent the first three years of his ABA-based education and all of the moms were involved in some way with the school's young autism program charity. Kristine’s son was 2 years old when diagnosed with autism; Tara’s son was first diagnosed as PDD-NOS before he was 3 and then with autism at 5; Christine has two children on the spectrum, her daughter was 2 and a half when diagnosed with PDD-NOS and that was changed to autism at age five, her son was diagnosed at 2-and-a-half with PDD-NOS and remains with that diagnosis now at 4; and Mikey was diagnosed with autism at 20 months.
I asked these magnificent moms what their personal feelings and reactions were when they first learned of their children's diagnosis. They all shared similar feelings of sadness, but also determination to help their children:
KRISTINE: I was very sad when [my son] was first diagnosed. I was angry and wondered why it was happening to my son. Once my feelings were put aside, I just wanted to do everything I could to help him.
TARA: My first feeling was, “What did I do wrong as a mother?” I thought I did something wrong during my pregnancy. No matter how many times everyone told me that it had nothing to do with me, I just did not believe them.
LYNNE: I felt overwhelmed that our child was not going to be “normal” and would need a lot of extra care. I didn’t have any confidence that I would be able to handle everything that would come our way.
CHRISTINE: Sitting at my kitchen table, answering the psychologist’s questions had a very bizarre rhythm to it. I found myself saying "She used to do that, but she doesn't anymore," repeatedly...So when the psychologist put down his pen and very carefully, and delicately, informed me that his diagnosis was PDD-NOS, I was not surprised. I was pregnant with my twins [a boy and a girl] when my daughter was diagnosed and they were the subjects of intense scrutiny from the start. At 2-and-a-half, my son’s behaviors started and we requested an evaluation. I knew that he would be diagnosed. When I heard the words, I could not help but cry. It was a kick in the stomach, the sensation of, "Not again, why him? Why us? Someone was supposed to tell me I was crazy. Can I handle this?" And after my five minute pity party, I was back on my mission, plus one, to do whatever was necessary to have my children reach the best outcome possible for them.
It was very heart-wrenching to hear their comments, but when I asked what their first steps were post-diagnosis, and what they found comfort in, it made me realize how strong autism moms really are:
TARA: My first thing…was to stop working. I needed to be home a lot more and that was the only way. I started asking as many questions as possible about his diagnosis to anyone who I thought had experience. I was lucky to have a very good case worker from the county to help me through this.
KRISTINE: I started to look at schools and find out as much information about schooling and home services as I could. I found comfort in talking to other mothers who had a child with autism.
LYNNE: My husband and I met with the county child services coordinator who helped to schedule ABA home services. It was comforting to see how many people seemed genuinely concerned about getting our son the services he needed. My husband [editor’s note: I swear I didn’t bribe her to say this] has always kept a very positive attitude, knowing that our son could do whatever he set his mind to. He has helped me consistently when it wasn’t so easy for me to see it that way.
CHRISTINE: The first step was to get each child into the best program possible [in this case ABA]. We also consulted with a pediatric neurologist to ensure we were covering all bases for [my older daughter]. Since her regression was so severe and so quick, more testing was suggested for her to rule out other causes for her behavior. The prospects were frightening: seizure disorders, a brain tumor, genetic disease. Thankfully, all of those tests were negative. I have found comfort from many sources in dealing with the diagnosis of our children. The support of family and friends has been amazing. Something like this also tests the metal of a friendship. You really learn who is there for you, who you can count on and, sadly, with whom it might be best to cut ties. The camaraderie of the parents who share our experience is invaluable…there is no greater resource for parents of children with autism than each other. I have also found peace in simply loving my children for who they are, not in spite of it.
When asked if they faced any challenges in getting services for their children, the moms were not to be deterred and, for the most part, eventually had positive experiences:
LYNNE: We have been very fortunate to have had some wonderful teachers over the past five-and-a-half years at both his autism program and within the school district. We feel that the services offered to our son have been quite comprehensive and we did not experience difficulty in securing them.
KRISTINE: I have been very lucky and blessed with getting services for my son. His school district has always steered him in the right direction. I have had great teachers along the way and they have helped me to be my son's best teacher.
CHRISTINE: I have had a remarkably positive experience in getting services for my children. I cannot say that everything has gone perfectly smoothly for both of them in the classroom, however. It has sometimes been a battle to be heard by those who are teaching her. In the end, I know that they are all trying to do the right thing, but that we do not always agree on what the right thing is…all any of us can do is try our best to find the right formula.
TARA: It was, and still is, hard to get services with my district. When he was originally diagnosed with an ASD from the CARRS test (given by a psychologist) they (the district) told me I had a typical two-and-half-year-old child. They completely disregarded that report. I was lucky that my case worker was there and she suggested the developmental school to me (integrated class) to at least get his foot in the door. Then we went to an MD to get the diagnosis and back to the table at district for a third time in one year (because the classes were not helping him, he was getting more lost) and demanded more. We finally were able to get him into the young autism program. There is where I found comfort. I was able to talk to other parents who were experiencing all the same tough stuff that I was. I was not alone…and neither was my son anymore, either. I saw immediately that he felt comfortable.
I believe that the autism community is one of the most valuable resources we have for helping our children and I finished up my interviews by asking what advice or tips these moms would give to mothers of children with a new autism diagnosis:
CHRISTINE: The best advice I can give is to try to get passed the label. That is, to look at the label "autism spectrum disorder" as a means to an end. An explanation for some of the unusual behaviors that your child displays…but it should never define or limit your child. Autism is a part of who they are, but it is far from all that they are. As your child's most important advocate, they will depend on you to recognize this and communicate that fact for them. Learn all you can about how to teach your child and how to navigate the system…and always keep in mind that the goal should be to allow them to become the best possible version of themselves.
KRISTINE: You have to put aside your own feelings and try your hardest to get your child into a great school at as early an age as possible. I did not want to send my 2 year old to school fulltime, but it was the best thing for him. You have to be strong for them and follow through with whatever it is they are doing at school. You have to learn how your child is able to learn. It's going to be you who has to make sure that your child is being taught the right things (my son is not verbal and learns a specific way). I am very involved in his education. I allow myself one time a month to break down and be a mess, and for those other 29 days I am my son’s rock!
TARA: Unfortunately, I have been giving a lot of parents with new diagnoses for their children advice. The first thing I say is that they are not alone. They are not the only mother in this world that is dealing with this. I tell them it is ok to cry, to just let go. Then I tell them my story and how, even now, I still have to fight for my child because I am his best advocate. Then I say that it does get better, even when you absolutely feel like it is not going to get better.
LYNNE: As soon as you have the first inkling, have your child evaluated. Early intervention is truly important. Educate yourself, and anyone involved in your child’s life, about autism. Remember to always see them as your child, not an autistic child. Make sure to discipline them, teach them, and most importantly, love them.
I have known these autism moms, and others like them, for a number of years. It has been an honor to watch them care for and advocate for their children and I have truly learned a lot from them. I know there are many, many other autism moms out there who have probably been nodding their heads as they’ve read this article…I hope that I’ve given them a sense of community and a chance to smile at the knowledge that they are not alone.
For me, one day in one month in the middle of the year is not enough to celebrate moms like this. I know Mikey and I appreciate and love Lynne more and more everyday for all she does. To Lynne, Kristine, Tara, Christine, and all of you autism moms out there, I say thank you and in the eyes of your children, please know, everyday is Mother’s Day.
Dan Olawski blogs about fatherhood and his son Mikey for the Autism Society. He lives with his family on Long Island, N.Y., where he works as a writer/editor. His time is spent following Mikey with a vacuum cleaner, watching his beloved New York Yankees and continuing his pursuit of the perfect chocolate chip cookie. He can be contacted at dantheeditorman@gmail.com.
Topics:Living with Autism
Mother's Day Hints for Men
May 9, 2012
By Robert Naseef, Ph.D., Alternative Choices
Why is it so hard for moms to take a break? How can fathers help?
First of all, struggling with taking a break from maternal responsibilities is normal. This is hard for the mothers of typical children-who presumably have a little less to be preoccupied about than mothers of children who have autism and other special needs.
So feeling overwhelmed by the enormous responsibilities of motherhood is normal, but when it goes on indefinitely, it's not healthy for a mother or her family. And fathers tend to begin feeling left out and neglected. While I frequently write about fathers, I spend a good deal of my time as a psychologist listening to mothers. Almost invariably mothers seem to be relieved when they give voice to their struggles-particularly the guilt about not doing enough or missing something they should have done or thought about.
Opening up and connecting about upsetting situations can help. On the other hand, suggesting that a mother do more to take care of herself often makes her feel worse. Listening to mothers in at Alternative Choices, we hear that this can sound like just one more thing to do. Their lists are already too long. And another thing they just aren't getting right-even more guilt!
One mom even told me, "My life seems like one long day!"
In contrast, the average overwhelmed father seems to have less difficulty taking a break. On the other hand, he may also have trouble talking about what he cannot fix or take action about. He may shut down out of helplessness and emotional overload that he has no words for. The very same man may love his partner and children passionately; yet he may feel left out, ignored, and powerless.
This reaction offers no outlet for his partner's feelings.
Still, most fathers admire when the mother of their children reacts like a mother lion with her cub, doing everything possible to raise their child.
So for this Mothers and Day and every day really, here's a plan for men:
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.
Don't do something. Don't make suggestions. Volunteer to just listen to how she feels.
Ask what you can do to make her job easier.
Gently and persistently 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. Let her know that she is indispensable. No one can do a better job. In the words of Oliver Wendell Holmes, "The real religion of the world comes from women much more than from men-from mothers most of all, who carry the key of our souls in their bosoms."
Finally, remember the most important thing a father can do for his children is to love their mother.
Robert Naseef, Ph.D. of Alternative Choices, will be presenting at the Autism Society National Conference and Exhibition in San Diego this July! He will be presenting a session called "Living with Autism in the Family: Taking Care of Everyone's Needs." Visit www.autism-society.org/conference to learn more!
Topics:Living with Autism
Mother and Sons Working Together to Change Lives
May 8, 2012
By Autism Society
Beth Gross is Vice President of the Autism Society of West Virginia and has been working with Autism Society members in her state to ensure families affected by autism have the insurance coverage they need.
Beth’s family has been particularly active - so much that her son Mason has become a mini celebrity at the Statehouse! At the tender age of 6, he has learned to advocate for himself in a way none of us ever could, Beth said. Mason has developed a touching and humorous rapport with most state legislators and was fortunate enough to have a private meeting with West Virginia Governor Earl Ray Tomblin in his private office this year.
“I am awestruck by the presence his young spirit carries and how he can so effortlessly chisel away at the exterior of the most hardened politicians,” Beth said of Mason.
Here are some photos of their journey:
Beth, Mason and Beth's other son, Ethan, with Governor Earl Ray Tomblin
With Senator Evan Jenkins (D - Cabell)
With Senate President Jeff Kessler (D - Marshall)
Governor Tomblin and Mason
Being interviewed by the local news!
How does your family raise awareness?
Topics:Living with Autism
