Archive

Posts Tagged ‘LIVE Chat’

LIVE Chat with Dr. Ricki Robinson Transcript

September 27, 2011 2 comments

On Monday September 26 Dr. Ricki Robinson, author of  Autism Solutions: How To Create a Healthy And Meaningful Life For Your Child, hosted a LIVA Facebook Chat.

Having a child with ASD can and will have an impact on your immediate family and extended family. While it is easy to be distracted by your child’s often overwhelming needs, it is important to carve out time for your family and friends. Often they can be your best support. Additionally you may need help dealing with many concerns, including those that are emotionally charged, such as how to tell others about your child, whether to have more children, how to incorporate siblings into his program, and practical ones such as financing respite care and just organizing your life and family, as well as getting your own job at work done.

2:34
Hi everyone! We’ll be live with Dr Ricki Robinson in just under 30 minutes, at 3PM EST. In the meantime, feel free to submit questions!
2:42
Type any questions in the box below and hit ‘send’. Don’t worry if you can’t see your question, it goes straight to us!
2:42
We’ll be live with Dr Ricki in 20 minutes!
2:52
Today Dr Robinson will be …..taking questions about Having a child with ASD the impact on your immediate family and extended family.
2:59
Hi Everyone, we’re here with Dr Ricki Robinson. We’re thrilled to have her back after the last live chat she did with us!
3:00
Dr Robinson: I am so pleased to be with you again. My first chat was an exciting, intense hour! I’m a pediatrician and I’ve devoted my practice to the care of children and families affected by autism for the past 20 years.
3:01
Dr Robinson: I have recently published Autism Solutions: How to Create a Healthy and Meaningful life for your child, in which I share with families what I’ve learned over the years that has helped their children move up the developmental ladder, and problem solve the challenges they meet along the way
3:02
Dr Ricki: A portion of the proceeds of the book of course gets donated to our host, Autism Speaks!
3:02
www.DrRickiRobinson.com for more info!
3:03
So without further ado…. first question!
3:03
Comment From Loni Alpino

Is there any monetary aid for an Autistic child for feedback and therapy services?
3:04
Hi Loni!
3:04
You ask a question that plagues every parent and family who has a child with autism.
3:05
There are so many stressers that families face, and financial issues are one of the primary ones that we see in families of children with special needs.
3:05
There are potential sources of aid…. many of them depend on the state in which you’re living.
3:07
Many of the services in some of the states are provided for through state agencies. As an example, I come from California, and children who have been diagnosed with ASD qualify for services through both the educational system and the California department of Developmental Disabilities. So my recommendation is to mine the services available in your community for funding, and don’t forget about medical insurance.
3:08
Through medical insurance if you have a willing physician, you can sometimes get funded for ancillary services that might be covered by your own insurance policy, or through Medicaid, especially if your child has other medical diagnoses such as seizures, GI problems or special dietary needs.
3:09
additionally approximately 25 states have now passed state insurance reform for autism service coverage to provide many of the services that occur in home for your child.
3:10
Once you know where all your sources of funding might be, then take a critical look at your treatment plan that is required for your child, and see how each element might be covered by each of these resources to put together the most robust treatment plan for your child possible.
3:11
For more information about the state supported autism insurance laws in your state, i suggest you go to www.autismvotes.org
3:11
Comment From Guest

My daughter is 2 years old and was diagnosed autistic on April 1st. I have some family members that keep insisting she’s just delayed. They don’t understand it’s more than her not talking yet. She doesn’t respond to her name, doesn’t point to let us know what she wants and really has never babbled. She makes noises, but not what I would call babbling. Any suggestions.
3:12
Your situation is very common in families where a child has been diagnosed with special needs, most especially autism.
3:13
There are so many emotional processes that are occurring for the family as a unit, and for each of you individually after getting this diagnosis.
3:14
Of course there is the initial shock that can send you spiraling into a true grieving process, and each of you in the family will work through this in your own time frame. Part of that process includes a stage of denial as particularly i see this in family members who aren’t living with your child day to day.
3:15
It will take them often longer to come to terms with the diagnosis and along with everything else we have to be patient for these things to happen. I particularly see this in grandparents, whose often have forgotten what it was like in the early years with their children, and the bumps that happen along the way.
3:16
To that end Autism Speaks has published ‘A Grandparent’s Guide To Autism’, that was developed specifically to help grandparents understand and deal with the emotions related to a diagnosis.
3:18
I find that when other family members get some understanding of what autism is, and they can get beyond the autism label to understand what are the strengths and challenges of the child who has autism, and learn about ways in which they can learn to relate and then help their family, that this will put the family members back on track to becoming a support that you might be able to rely on.
3:22
There are also professionals who understand this process who can provide help for those who are really struggling, and sometimes that is necessary. Finding a caring pediatrician with whom you are able to share these issues may provide you the support you need to be able to take the help back to your family members. In my experience having such a case manager for the long term allows you to not only meet both the medical needs of your child and your family, but also your emotional needs.
3:22
Comment From Maureen Early

What is the best way to educate your extended family about autism, especially when it looks like a child is tantruming because they’re “naughty” instead of due to their symptoms of autism.
3:22
Hi Maureen!
3:23
I am so glad that you asked that question, because it is one of my pet peeves.
3:23
So often children, all the way up to adults with autism, are described by their behavior, as you noted.
3:23
and yet…. this behavior often comes the greatest clue that we have to what a child is thinking or feeling.
3:24
and why do I say that? When a child is not able to communicate, and yet has intent, what would we expect them to do?
3:24
Of course they’re going to do something to express themselves.
3:25
So our job is to become a detective, and to try to figure out what they’re trying to tell us. So often these behaviors don’t have intent, but are actually a response to the environment. We know that children with autism have unusual responses to the world around them.
3:26
Additionally one of the senses that we have is how we interpret our own bodies. It’s how we know that we’re hungry or that we have a pain, and where that pain is going to. My hypothesis is that it is just as difficult for children with autism to understand this sense as it is for them to understand the world around them.
3:27
Therefore quite often a change in behavior is related to how your child is feeling at that time. If a behavior is persistent and is effecting his quality of life, then it is my experience that a medical illness must be ruled out. I have covered this issue extensively in my book, for those of you who might be concerned that your child may be experiencing a medical problem.
3:28
However it is important that we “demystify” a child’s behavior for your family members. If you can ask your therapy team to help you with language that is understandable to describe these behaviors to your family members so that they can also begin to understand what your child might be expressing. This can be incredibly helpful.
3:29
Comment From Relonda Supel

What therapies and doctors should a child with autism have in place beside the therapy he gets in school and seeing your usually pediatricians
3:29
Hi Relonda!
3:29
Putting your team together is one of the paramount issues for parents and families.
3:30
Depending on your community, there will be a variety of resources that you can tap into.
3:30
If you happen to be in a community where there are few resources, then Autism Speaks has provided a resource guide to help you identify local resources.
3:31
Here’s a link to that guide:http://www.autismspeaks.org/community/fsdb/search.php
3:31
Depending on the resources available, you still need the manager of your team. In general it becomes one of the parents.
3:32
Sometimes you are able to find a professional on your team who has experience in case management. Pediatricians and other physicians sometimes do have this expertise, and you will want to find out about that.
3:33
Deciding on who your team members will be really comes from understanding your individual child. Nowhere in medicine have I experienced a complex disorder requiring so much individualization of a treatment plan.
3:33
When you determine through your professional consultations what your child’s challenges are, then my approach is that every challenge deserves the proper treatment.
3:35
This means that your treatment team will look like a wheel, with the child, parents and family at the center of the wheel, but the therapists as the spokes of the wheel, and the tire of the wheel are all the challenges and barriers that your child faces. What we know is that these challenges will change over time, especially as your child goes into adolescence and into adulthood, and so this therapeutic team will change accordingly.
3:37
That’s a long way of saying that I can’t tell you how many doctors you will need, and you will be the advocate for that, depending on the challenges that arise. Finding team members where you can have an ongoing dialog where they will listen to your concerns is key to finding the right professionals at the right time. And you, as the parent, are the keeper of that key.
3:37
Comment From Lou Melgarejo

My wife and I fear that when our kids are older, our two neuro-typical kids will resent their autistic sister for the restraints that her condition has put on our lives. Do you have any suggestions for raising siblings without resent?
3:38
Hi Lou! You too ask a question that is on the mind of most parents who have more than one child.
3:38
If truth be told, it’s on the mind of all parents, as typical siblings, as they grow up, often become resentful of their siblings, and their perception of their place in the family.
3:39
For siblings of children with autism, these feelings may come sooner, and are more real.
3:39
because off the 24/7 nature of living and helping a child with autism.
3:40
Although I can’t guarantee that you can’t raise siblings without resentment in any family, there are things we can do. I think they first thing you have to do is to help your siblings understand what is happening for their brother or sister.
3:41
We must always inform siblings as directly as possible using age appropriate language, and be certain to not let our fears and worries be evident, as they are able to pick up on these aswell. I like to describe to them, not in the terms of the autism label, but we have to tell them what that really means for their sibling.
3:43
I find that older siblings, who so much crave to have an interaction with their brother or sister, but don’t know how, can be mentored by giving simple techniques and instructions as to how they might be able to engage their sibling in a meaningful way that will be fun for both of them. I find also that having a sibling with autism is a double edged sword: resentment goes hand in hand with guilt.
3:45
Siblings may feel guilty because they do not have autism, and yet may resent the time that you might have to spend with their brother or sister. These issues are best dealt with if brought to the front and center in a way that will help these children deal with their own emotional journey.
3:47
Studies have shown that siblings who have brothers or sisters with ASD often learn to cope quite well. For many learning to be a helpful member of the family becomes second nature. In fact as an adult a sibling one of the helping careers and may become more skilled than their peers in responding positively to their own emotional needs.
3:48
if you happen to have a child who’s having a difficult time, especially as an adolescent you may also need to consider getting them the support they need to work through these emotional issues.
3:48
Comment From Bobbie Jo

sometimes my son seems as if he is bi polar. I expressed my concern and I am told that it is normal for a child that has autisim?
3:49
Actually Bobbie Jo, what you’re describing, which I presume is mood changes, both highs and lows in your son, can occur in autism, but is not necessarily part of autism.
3:51
Often these mood concerns can interfere with your child’s daily life and absolutely derail learning and interactions. if this is the case, then we do have ways of addressing these issues medically. Certainly your son deserves a full medical evaluation. In this case I would suggest asking your primary care physician first, to refer you to a specialist, which might be a child psychiatric or neurologist, or developmental pediatrician who has expertise in this area.
3:53
Mood issues in autism is considered a co-morbid condition that are overlapping the symptoms of the autism. this is not always easy to sort out, and is why you need a physician with expertise to help you determine what is happening for your child, and the correct treatment approach. Again, if you’re having trouble finding a professional in your community who can help you, please check out the Autism Speaks resources guide:http://www.autismspeaks.org/community/fsdb/search.php
3:54
Comment From Joseph

Do you put any emphasis into the new belief that Autistic kids should now also have included in their therapies joint attention therapy?
3:55
I am so glad you asked that question Joseph.
3:57
For children with autism, who at their core have a delay in social and emotional development, it behooves us as part of their treatment program an approach that helps them gain mastery of social interactions. In order to do that one has to go back to the basics, and help a child develop his ability to attend to another in a meaningful way, in order to engage and interact.
3:57
Recent research has confirmed that children who developed joint attention have greater gains in language than those who have not.
3:59
This underscores the hypothesis that strong foundational social and emotional development is really required for a child to be able to think and create. This at the end of the day is what we hope for all children with ASD. So how are you going to do this? There are many techniques that can supplement what your program is, or can be the primary focus of your program, that will support your child developing joint attention and engagement and reciprocity in play.
4:00
I use the DIR/Floortime approach in order to foster these abilities. I have described them fully in “Autism Solutions, and describe how to implement Floortime in the home throughout the day.
4:03
Other approaches that can help include the Early Start Denver Model. Practitioners of these approaches are increasing around the world. Floortime was designed for parents to learn how to interact with their children by understanding how their child learns about the world, what they’re individual differences are that derails this interaction, and then entering their world with this understanding by following their child’s interests.
4:03
If you wish to pursue this, Autism Speaks has a reference library for books on these subjects.
4:04
Remember, shared emotion with others and relationships that are developed are the glue that supports all that your child does.
4:07
I want to leave you with a final message today: I’m sorry I couldn’t get to all your questions, but I hope to be back in the future for more. Just remember: believe in your strength, creativity and love. Your family will help you meet the challenges of raising a child with autism, so you can help your child be the best that he or she can be!
4:08
Autism Speaks: Thanks everyone for coming, and thanks Dr Ricki for another great chat. Sorry we didn’t get to everyone’s questions.
4:08
You can forward any questions to familyservices@autismspeaks.org, or call our autism response team 888 288 4762
4:10
If you’re interested in Dr Ricki’s book, Autism Solutions, check out her site here: http://www.drrickirobinson.com/
4:11
Thanks everyone!
Categories: Family Services Tags: , , , , , , ,

Autism Speaks Co-Founder, Suzanne Wright to Host LIVE Facebook Chat

September 20, 2011 8 comments

Join us on September 21, 2011 at 1pm EDT for a LIVE Chat with Autism Speaks’ Co-Founder, Suzanne Wright! You can read a special letter written by Autism Speaks Co-founders Suzanne and Bob Wright, grandparents of a child with autism, here. 

Suzanne and Bob Wright are co-founders of Autism Speaks, the world’s largest autism science and advocacy organization. Inspired by the challenges facing their grandson, who suffers from autism, they launched the foundation in February 2005.

Suzanne has an extensive history of active involvement in community and philanthropic endeavors, mostly directed toward helping children. She is a Trustee Emeritus of Sarah Lawrence College, her alma mater. Suzanne has received numerous awards, the Women of Distinction Award from Palm Beach Atlantic University, the CHILD Magazine Children’s Champions Award, Luella Bennack Volunteer Award, Spirit of Achievement award by the Albert Einstein College of Medicine’s National Women’s Division and The Women of Vision Award from the Weizmann Institute of Science.

In 2008, Suzanne and Bob were named in Time 100’s Heroes and Pioneers category, for their commitment to global autism advocacy. They have also received the first ever Double Helix Award for Corporate Leadership from Cold Spring Harbor Laboratory, the NYU Child Advocacy Award, the Castle Connolly National Health Leadership Award and the American Ireland Fund Humanitarian Award. In the past couple of years the Wrights have received honorary doctorate degrees from St. John’s University, St. Joseph’s University and UMass Medical School – they delivered respective commencement addresses at the first two of these schools. The Wrights are the first married couple to be bestowed such an honor in St. John’s history.

The Wrights have three children and five grandchildren.

Click here to read A Grandparent’s Guide to Autism.

Categories: Co-founders Tags: , , , , , , , ,

Hacking Autism LIVE Chat Transcript

September 7, 2011 2 comments

On September 6, the first Hacking Autism LIVE Chat was held, where members of the Advisory Board discussed ideas submitted by the community.

The Hackathon event will bring together Hacking Autism’s Advisory board, experts in Autism, technologist and people on the spectrum. This catalyst event takes the ideas submitted to the Hacking Autism website to a multidisciplinary group to actually create applications for people to use free of charge.

The next chat will take place on September 13, please be sure to join here!

7:02
Welcome to the first live chat for the HP Hackathon!
7:03
This chat is text only – you’ll interact with us via the live chat client that you are logged into at different times. We have a special group of our advisors also on the chat with us – and we’ll introduce them in a a few moments.
7:03
The Hacking Autism Hackathon has pulled together a volunteer group of software developers with leading autism specialists to work together to develop groundbreaking, touch-enabled applications for the autism community.
7:04
Tonight’s chat is all about improving a few of the best ideas and creating a conversation with you about this program. This is the first of our 2 scheduled chats.
7:04
In mid-October, we’ll be at HP offices for the live hackathon, taking the best ideas and matching them up with volunteer development teams to actually build the apps you’ve submitted!So far, we’ve had some 245 ideas submitted! Thank you!
7:05
Have you submitted an idea to hackingautism.org yet?
Yes!

 ( 35% )

No, still thinking of a good one!

 ( 65% )
7:07
How tonight is going to work…The first part of the chat will be fairly structured… we’ll show you 3 separate ideas, and for each idea ask you a few questions and then start to brainstorm on how to improve the idea. More on that in a moment…Meanwhile, I’d like to briefly let you know who you’ll be interacting with tonight from our advisory committee…Phil McKinney with HP
David Canora with Disney
Marc Sirkin with Autism Speaks (and the fast fingers, I’m doing the typing tonight)
Peter Bell with Autism Speaks
Shannon Kay with May Institute
Kate Grandbois with Spaulding Outpatient Center for Children
7:09
Ok, great… here’s how tonight’s chat will work:First, we will present an idea and ask via interactive poll if it is clear what the idea is…Then, we’ll ask for feedback and input on the idea (i.e. do you like it, or not) via another short pollFinally, we’ll brainstorm a little on some good features – just submit your ideas and questions when we prompt you and we’ll share responses with the group as we go…Ok… are you ready? Here’s the first idea…
7:10
Idea 1 Stress Thermometer
7:10
Comment From Quinton Hall

I have a 12 year old brother that has autism like symptoms. What type of applications are available for him. I have been a very important role model in his life thus far.
7:10
Hi Quinton! It is great what you are doing and your brother is lucky to have you. We can send you two place. Autism Speaks has recommended Apps herehttp://www.autismspeaks.org/family-services/resource-library/autism-apps
or you can visit the Hacking Autism App Gallery here -http://www.hackingautism.org/apps
7:11
There were several entries submitted for this concept including:An ap that brings calm for autistic children when they are at high stress level or burn out. Something visually calming- with sounds that calm perhaps starting at a louder volume and automatically slowing down and quieting as their stress level subsides.I’d love to see an app that‰Û_tells caregivers- who do not know about autistic behaviors- how to see the signs of upcoming stress and inturn meltdowns- that are happening to our kids- and how to avert them. IE: a child is clenching their fist…that means they are rageing inside and will be heading toward a meltdown. If we can avert them they will be less. It is called Rumble- Rage and Recovery. We never want the Rumbling to reach the Rage stage.I would love to see an app that allows someone with Autism who is nonverbal to communicate their level of stress and anxiety…a “stress thermometer” where they could mark with their finger their level of anxiety.Take a moment to read the submissions…
7:12
Do you understand the basic concept of “Stress Thermometer?
Yes

 ( 73% )

No, it’s unclear

 ( 27% )
7:13
Do you like this idea?
Yes love it

 ( 67% )

Unsure

 ( 33% )
7:15
Ok.. now it’s your turn… submit ideas to improve the idea, or ask questions!
7:16
“Guest” asked for some more details about this idea… basically, it’s a way for to help someone communicate an absract idea of stress.
7:17
Comment From Guest

The concept of a stress thermometer seems clear enough, I could use one of these myself, and maybe autistic folks could use one for other people. But what would it actually do?
7:19
A stress thermometer could be used as a replacement behavior for inappropriate behaviors (for example, replace aggression with using the “I’m angry” setting. The app could track the usage across times and situations.
7:19
Comment From Betty

Will this thermometer change colors as the person’s mood chsnges??
7:19
Comment From Joeliene

Would this be done through a series of icons almost like emoticons that the child could indicate an emotion or what they are feeling at the moment?
7:19
Joeliene – sure! Great idea.
7:20
Comment From Guest

I like the concept…. and having a way to demonstrate the stress level could be helpful.
7:21
Comment From Valerie K

We use colors, each identifying the stress level. Green=1/calm, blue=2/not so calm, Yellow=3/aggitated, Orange=4/frustrated, Red=5/MAD
7:21
Valerie – excellent!
7:21
Comment From Ronnie

Could it be personalized? perhaps with visuals that are used in their daily life or would they need to be training on this new visual?
7:21
Comment From Cindy

I like the idea!
7:22
Comment From Calebs Mom

agree with Joeliene I Can see that idea working
7:22
Ronnie – Peter Bell from Autism Speaks added that perhaps we could even license characters for the thermometer – Power Rangers, Pokemon etc… Very cool :)
7:23
Comment From julie hudy

Ronnie – cool idea :)
7:23
Ok everyone… let’s transition to the next idea… idea 2 Bullying “Lifealert”I’d love to see an app that‰Û_can protect our children from Bullying! This APP can be a direct message to the school of any incident any time. May be we can even efforce schools to pushish bullying just like they would do for any other asault. “Super B” will enable our kids to feel protected at all times and send a message with names and specific situations to the school and hopefully a copy to their parents. My dream would be fro every teacher to say on the first day of school….Please download “Super B” and use it any time! We will make sure your confidenciality remains protected and Bullyest be held responsable!!Thank you for your consideration!I’d like to see an app that provided children (particularly middle school children) with examples of how to address comments from bullies. I am currently working working towards my Masters degree in speech pathology and Florida State University and help run social skills groups at the Center for Autism and Related Disabilities (CARD) in Tallahassee- FL. In working with middle school-aged children- they have shared with me numerous times that the concepts they learn they can’t apply. They tell me that in middle school “if you’re not cool- no one will talk to you”. So many times- the concepts we teach them- they are not even able to practice because they already feel like they don’t fit in and do not communicate very often to similar age peers. When they do initiate conversation- however- they get made fun of or picked on. I think having an app that can demonstrate appropriate ways to respond to such interactions can be very beneficial and provide concrete examples. This may be done through a combination of a social story with text for additional support and details.
7:23
Take a moment to read…
7:25
Do you like the idea of a lifealert type service for bullying?
Yes

 ( 87% )

No, not really

 ( 13% )
7:26
Comment From Mark Anthony

I love the Super B idea. I worry all the time how my son will deal with Bullying in Junior High.
7:26
What questions or suggestions do you have for this concept?
7:26
Comment From sean

bullying is a reality and anything that can helpful like an application would be beneficial and maybe be intoduced to school
7:26
Comment From Rachel

I love the concept, but unclear how it would help / what it could do.
7:26
Comment From Betty

Yes I LOVE the Super B idea!!!
7:27
Rachel – a simple app with social stories and perhaps even a way to alert teachers/aides about how to respond to bullies
7:27
Comment From Steve-Aspie_Dad

Bullying “Lifealert” – We need more anti-bullying awareness and prevention. Anything to help protect our children would be appreciated greatly!
7:28
Comment From Lynelle Majors

good idea but how can we actually get our kids to use it…. my son would never do it.
7:29
Lynelle – not sure to be honest! That’s why we’re brainstorming about the concept. Some kids might not want to “tattle” but in some situations it could be useful.We’re also wondering if this app could also include “social” stories to help kids learn how to handle different situations.
7:30
Comment From Lindsay

Bullying I think might always be an issue for children with disabilities! A lifealert system would be a great idea!! Expecually since theres alot of autistic children who don’t talk or can’t express they’re feeling or whats going on outside the home
7:30
Comment From Suzi

I think the idea could be a great tool – especially if it offers both a way to alert others – i.e. track occcurances & gives social stories for possible responses.
7:30
Comment From Sherry

My son is in Kindergarten and is already being picked on by kids on the bus
7:31
Comment From Andrew

Thats an amazing idea. I have Aspergers, and I’m quite High Functioning, and the symptoms aren’t there anymore for me, but yes, I think this is a great idea for those who are low-functioning.
7:31
Sherry – that’s terrible. Please alert your school officials!
7:31
One of the things the app could also do is educate parents on how to address the issues, explain their rights and more.
7:31
Comment From Keith Ringled

Would this be an alert that is immediate. So that personel can respond when incident is happing?
7:32
Keith – ideally.. yes!
7:32
Comment From Nexus

i think it may be a good idea, however I see great means of abuse to come from it.
7:32
Another benefit could be tracking both for individuals as well as across a geographic area, school or district.
7:32
Comment From Kelli

would this app be affordable?
7:32
Comment From Darcy

I think that in some instances it could be great. Even if used only when telling is trully needed.
7:33
Comment From Nexus

now are we talking about online bullying or real life bullying
7:33
Nexus – potentially both actually.
7:33
Comment From Calynn

That would be great… I love the idea. My sister gets bullied and she has ASD so i think this is a very useful app
7:34
Comment From Guest

if it were immediate it would be hard to abuse…because officials can respond right away
7:34
Comment From Jerry Scott

Most Jr. High Schools that I’m aware of don’t let kids use phone during the school day – immediacy would be a problem. An app that walked a kid through a re”port of bullying “time, place, etc” might be very useful to get an accurate picture of what happened.
7:36
Jerry – great point although it is possible to get a device like an iphone or ipad written into an IEP accomodation.
7:37
Comment From Sonia

how would this app work for a kindergarten student?
7:38
Comment From donna

I would also like to see the app have features available to teachers, (especially general education teachers) to use to educate/inform their general ed students about how to accept others that are different (those with ASD). If we help to teach awareness and spread information it might cut down on bullying due to misunderstanding.
7:38
Sonia – good point – there is no universal solution to any of these apps!
7:38
By the way.. if you have app ideas…. please submit them at www.hackingautism.org
7:38
Ok… let’s go to idea #3… Storyboarding/Social stories
7:39
I came across a realy cool p[rogram through my6 sons speech therapist. Its for easy story boarding. YOu can use there pictures or your own- including photographs to make a quick story board or evets calender for your chyild. Might be cool to inlude one the kids could use themselves to show us what they want or need.An app that will enable me to write social stories on the fly on my son’s iphone.I’d love to see an app that‰Û_easily allows parents and therapists to create social stories based on a combination of “packaged” pictures and personal photos. It would provide a template for pages with a drag and drop interface to allow the user to develop the story and add appropriate text. It would then be viewable as a sort of slideshow or could be printed. My grandson LOVES his IPAD- so it would be nice if it ran on the IPAD as well as PC systems. A really great addition would be a library of animated icons or pictures to help make the story lively.
7:39
Comment From Leah

Definitely needs to be tailored to different ages.
7:40
Do you understand the basic concept of Storyboarding/Social story
yes

 ( 84% )

no

 ( 16% )
7:40
If you were wondering…. the ideas submitted were copied and pasted here – we didn’t change a thing!
7:40
Comment From Michael Needleman

You could build the app to age appropriateness. One interface for kindergarders, another for middle school, another for high school. Becoming more complex over time.
7:42
Comment From Leah

The storyboard app is an excellent idea. Parents go crazy taking photos and laminating and printing.
7:42
Comment From Suzi

Love this idea!
7:42
Comment From Jerry Scott

I love this idea – if my daughter could select a situation from the screen and then review the story board – it would really help her get through a lot more situations on her own.
7:43
Comment From Lynelle Majors

I think it would be great if the kids could input their own situations and stories….my son has a hard time telling the difference between that actually happened and what he wanted to happen
7:43
Have created your own storyboards?
Yes

 ( 54% )

No

 ( 46% )
7:43
Comment From Keith Ringled

I Struggle as a creative person. I sometime find it hard to put together a social story on short notice. This could be benificial. If the pictures and stories get to generic I know my son would lose interest.
7:44
Comment From donna

It would be good if there were a combo of pre generated pics as well as you can upload/use your own photos. this would make it most relevant
7:45
Comment From Ann

I like Donna’s idea of both generic photos and uploading your own.
7:45
Comment From Guest

The ability to search the internet for images would be great
7:46
Comment From Michael Needleman

Adding location awareness to the app so it would present pictures based on physical location might be a cool feature.
7:46
Comment From Jerry Scott

Maybe we are limiting ourselves in this concept a little – with the video cameras on the phones/pads, why have a story board when you can have a “Social story video”
7:46
Jerry.. yes!
7:47
A bank of good “pre-fab” examples would be great, and then you could replace/edit them with your own images/videos…
7:48
Comment From Jerry Scott

I picture taking a video of my older daughter brushing her teeth the “right way” then having it play while my daughter with autism brushes hers
7:48
Comment From Guest

Having the ability to share your story via email or social networking is also fantastic
7:48
Comment From donna

Great idea Jerry! I enjoy that a lot
7:49
Comment From Ronnie

Jerry that sounds great! But I do think social stories on boards have a place. I had a student who got too caught up in the “business” of a video (whether he was in it or not) and really needed the organization of a 1-2-3-etc picture story
7:49
Comment From Suzi

If video were used, my daughter would likely be upset if the reality didn’t match exactly.
7:49
Ronnie – perseveration is a real issue to consider. You are right.
7:49
Comment From Jerry Scott

I think the ability to share the user-generated content with many of these apps will be one of the most important features. As parents and caregivers, none of us has the time we would like to spend developing these types of things.
7:50
Jerry – amazing concept!
7:50
Sharing social stories with each other, and allowing people to customize them on their own devices, and share them back again. Terrific.
7:51
Ok, let’s transition to some open discussion and questions… submit any questions or comments you have now! We have about 10 minutes left…
7:52
Comment From Joeliene

What is the timeframe on development of an app – once the hackathon is complete?
7:53
We can send you two places! Autism Speaks has recommended Apps here http://www.autismspeaks.org/family-services/resource-library/autism-apps
or you can visit the Hacking Autism App Gallery here -http://www.hackingautism.org/apps
7:53
Joeliene – great question… it all depends on the complexity of the app
7:54
Also, developers are donating their time and efforts!
7:55
Comment From Jerry Scott

I am wondering if we could use computer science students to some of the development. Could we structure the app development in such a what that professors could offer chunks to their students to do as projects?
7:55
Jerry – we’re using professional developers to ensure we’re building quality apps
7:55
Comment From donna

how often are those resources updated with newly found or newly created apps?
7:55
Comment From Guest

price range on the apps?
7:56
Guest… all free!
7:56
Comment From Joeliene

And, then how will they be made available at large – for purchase, free, iTunes
7:56
All depends on what actually gets built!
7:57
Comment From Rachael

have you considered a panel of older ASD individuals to give ideas that would have helped them when they were younger?
7:57
Rachael – John Robison is part of our committee and yes, we’re always looking for suggestions and ideas.
7:58
Wow, that was terrific! We’re going to have to wrap the chat up now… THANK YOU for participating!Next week, we’ll hold another live chat – same place, and same time, 7pm EST with more ideas and more time for discussion.Meanwhile, if you are in the NY/NJ/CT area on Sept 17 and 18, we’ll be at Maker Faire… stop by if you are planning to attend and watch the Autism Speaks Facebook/Twitter/web site for information and volunteer opportunities.
7:58
Comment From Jerry Scott

H.A. – Thanks for your efforts, on behalf of all the parents here we really appreciate it!
7:58
Comment From Joeliene

will this live chat remain available for other to read if they could not participate?
7:59
Yes – there is a live transcript available for the chat.
7:59
Please provide additional ideas on www.hackingautism.org - we are still accepting new ideas!
7:59
Comment From Rachael

thank you so much for looking out for new ways to help our kids :)
7:59
That’s all for tonight – thanks everyone!


Categories: Awareness Tags: , , , , , , , ,

Hacking Autism LIVE Chat

August 25, 2011 5 comments

On Tuesday September 13, there will be a LIVE Chat with the community and the  members of the Hacking Autism Advisory Board to discuss YOUR ideas! We want to know what you think and to collaborate with you on refining and selecting the best ideas!

Using technology to give people with autism a voice.

 Partners
HP – Austim Speaks – Doug Flutie Jr. Foundation – Goodby, Silverstein & Partners

Overview

Autism, one of the fastest growing developmental disorders in the U.S., affects 1 in 110 children. Many of these people have difficulty communicating and expressing themselves. We believe technology can help. Technology is in no way a cure. In fact, we’re not out to cure autism. Our goal is to help people today, with the knowledge and skills we have.

WE NEED YOUR IDEAS!

Technology has always promised to make our lives better. Finally, it’s actually doing it. Touch technology is giving people with autism a way to communicate and express themselves like never before. It is giving people with autism a voice. Some, for the very first time.

By working together to create touch applications for people with autism, the HP Hackathon is unleashing software’s potential to adapt hardware and advance technology. It’s an invitation for the tech community to unite. It’s an open call for collaboration that will make a real difference in the lives of a growing community.

WHAT IS HACKATHON?

The Hackathon event will bring together Hacking Autism’s Advisory board, experts in Autism, technologist and people on the spectrum. This catalyst event takes the ideas submitted to the Hacking Autism website to a multidisciplinary group to actually create applications for people to use free of charge.

 

Advisory Board
Phil McKinney – HP
Chris Mertens – HP
David Canora – Disney
Jim St. Leger – Intel
Jennifer Leighton – Spaulding Outpatient Center for Children
Kate Grandbois – Spaulding Outpatient Center for Children
Peter Bell – Autism Speaks
Andy Shih – Autism Speaks
Simon Wallace – Autism Speaks
Shannon Kay – May Institute
John Robison – Autism Speaks

Categories: Awareness Tags: , , , , , , , ,

IEPs, iPads and Bullies: 10 Tips From a Dad Who’s Been There

August 16, 2011 25 comments

James Vaughan’s 11-year old son, Kian, is entering the 6th grade in the Weber County public schools in Utah.  Kian, who has high functioning autism, has been mainstreamed in public school since the second grade and has made great strides.  James attributes the progress to the successful partnership he and his wife have cultivated with the folks at Kian’s school.  James is one of many parents sharing his story, tips and team on MyAutismTeam.  We recently spoke with him to learn how he has partnered with his public school to create a positive and safe learning environment for Kian.   Here are 10 tips we gleaned from speaking with James.   Hopefully some of them will help you.  You can post questions and comments directly to James’ wall by clicking  here .

Please join the Family Services, LIVE Facebook Q & A, ‘How To Compromise With Your School District Without Compromising Your Child’ with Gary Mayerson, Wednesday August 16 at 7pm EDT.

(10) Get the Official Diagnosis As Early As Possible

Dr. Megan Farley of the University of Utah diagnosed Kian.  We didn’t get the official diagnosis until December of last year when he was 10 because we had been worried about saddling him with the label of autism.  In retrospect I would say the right time to get a diagnosis is “as early as possible”.  Having the official diagnosis in hand, along with some written recommendations from the doctor enabled us to secure even more services for Kian including technology assistance [see #9].  When we decided we wanted a diagnosis we had to be very persistent with our pediatrician to get a referral.  He kept assuring us that Kian would outgrow some of his developmental challenges, but in the end agreed to give us the referral when we were persistent.

(9) Be Firm, But Flexible

My wife and I always make sure that every concern we have about Kian is thoroughly understood by our partners at the school, particularly during the IEP process.  Talking about his speech delays got us speech therapy.  Talking about his challenges interacting with other kids led to social skills therapy, and so on.  It’s important to make sure they understand and address each issue.  I’m the kind of person that doesn’t take “No” for an answer, but you have to be flexible.  There have been times we’ve requested something for Kian that the school hasn’t been able to accommodate.  But rather than saying “No” they’ve always said, “I don’t know if we can do that, but here are other options we can do.”

(8) Communicate Frequently All Year, Even After the IEP  

The open communications continues after the IEP, otherwise it’s not a real partnership.  We regularly check in with Kian’s teachers and aide to make sure we are helping each other.  We also keep the focus of the communication on Kian’s development. We let them know things we are trying at home that are working, and notify them of any changes that could impact Kian’s performance in school that day.  We’ll say, ” You may see some distraction today – here’s why… .”  That helps them understand how to interact with him.  Similarly, we want them to tell us about the challenges they are having with Kian at school so we can then work on those issues at home.   The more we are open with each other on a regular basis, the better the job we do meeting Kian’s needs.  It keeps everyone focused on the goal of his development.

(7) Speech Therapy, Social Skills and 1-on-1 Aides

Before the second grade, Kian was in the school’s alternative kindergarten and first grade program.  There, he had a strong speech program and one-on-one time.  He flourished.  Now, in the mainstream curriculum, he has an aide and is pulled out of class for 30 minutes each day for either speech therapy or social skills integration. That one-on-one time has been critical, and the special attention from the aide makes it easier to accommodate Kian in the classroom.

(6) Ask If Your Child Can be Tested Differently

When the teacher stood up in front of the class and read off questions for the students to answer in writing, Kian couldn’t really respond to this normal classroom testing, but it was not due to a lack of understanding of the material.  When we asked, “Can Kian be tested differently?” the school was happy to do so.   He now gets tested on computer where he can type his answers — something he can do quite well.

(5) Seek Out Alternatives for Stressful Situations

Going out to recess was more traumatic than fun for Kian.  If that is the case for your child, ask if there alternatives.  We asked and Kian was able to stay in the classroom during recess so he could read or do some other type of project.

(4) Get Involved If You See Bullying & Teasing 

It’s not surprising that a child struggling with social interaction will get teased and sometimes bullied, but it’s certainly not acceptable.  If you see it,  GET INVOLVED IMMEDIATELY.  My wife is a spunky lady.  When she sees bullying going on she makes sure that the students and parents involved know about it and are educated about it.  But she does it in an understanding way.  She explains how kids are different from each other.  We’ve increased awareness about bullying at the PTA.  PTA is a great thing.  You’re mingling with other parents and making them aware of the issues.  When other parents become aware of the issue, they then talk to other parents, who in turn, talk to their kids.  We’ve received phone calls out of the blue from other parents saying, “I learned about the teasing my child was involved with.  You won’t have a problem with that again.”

(3) Start With The Goal of Building a Real Partnership

One of our goals from the outset was to form a strong, open partnership with the people at the school, from the Principal to the teachers and aides, to the Special Education Director.  Kian’s challenges were a lot bigger than we could handle on our own.   We let them know how much we’d appreciate their help looking out for Kian and making sure his needs were met.   We committed to be totally transparent and open with them and to help reinforce the right behaviors at home.
We certainly didn’t want our son to be a distraction to the teachers and other students, but we also wanted to make sure he had everything he needed to develop and grow.   The principal of our school recently told me why they’ve always been so open to finding solutions for Kian saying, “You cared, you really showed it was about forming a partnership with us, and you were always up front about the issues before they became a situation.”

(2) Reduce Homework and Leverage Technology
After spending a day with Kian, Dr. Farley immediately suggested a reduced homework load for Kian and suggested we use a computer or other technology to help him type his homework.  20 minutes of normal homework was taking him 1-2 hours to do (partly due to challenges with handwriting). Our school district had a special foundation that was able to provide Kian with an iPAD.  He uses the ipad to keep a calendar of his assignments and to type out his work rather than writing everything out by hand.  He also receives a reduced amount of homework.  Again, this is setting him up to be more successful each day rather than falling behind.

(1)  Reach Out to Other Parents

In the autism community, the biggest contributor to hopelessness is not knowing who to talk to and where to go for advice.   I like what MyAutismTeam is doing because they make it easy to connect with other parents near me and see which providers they recommend and what kinds of activities they are doing.  It’s a great tool to get those relationships started and then be able to expand on them.  My wife and I started a program in Utah called FAAST (Families of Autism and Asperger’s Standing Together) that meets monthly.  I posted an upcoming meeting on my wall on MyAutismTeam the other week and ended up meeting another parent that way.

- Interview Conducted by Eric Peacock, GM of MyAutismTeam 

Categories: Family Services Tags: , , , , , , , , ,

Increased Risk of Autism in Siblings LIVE Chat Transcript

August 16, 2011 9 comments

Autism Speaks’ Alycia Halladay, Ph.D., hosted a LIVE Facebook Chat on the just released study showing a high risk of autism among the younger siblings of children on the spectrum. Dr. Halladay organized and continues to help lead the High-Risk Baby Siblings Research Consortium that conducted the research and which continues to study the factors that predispose some families to autism recurrence. Please see our news item and a special commentary from Autism Speaks’ Chief Science Officer Geri Dawson, Ph.D.

4:11
Hello Everyone! Thanks for joining our chat!
4:12
Hi there. My name is Alycia Halladay, Director of Research for Environmental Sciences here at Autism Speaks. Autism Speaks funded the analysis released today, and we work very closely with the Baby Sibs Research Consortium, who collected the data and works with the families. I am happy to answer questions and excited to hear your thoughts.
4:12
New findings on risk of autism in siblings – What do they mean for parents? http://www.autismspeaks.org/what-autism/learn-signs
4:13
Experiencing technical difficulties.
4:13
please hang on
4:13
We received several questions throughout the day. We will start with this one question
4:13
FROM SHAMIMP: What is the definition of sibling in this research, was it children having the same set of parents, mother and father? What is the percent of ASD occurrence for step brother and step sisters where they have the same father or different mothers or same mother and different fathers?
4:13
In this study, siblings had the same mother and father. We don’t yet have the numbers for children with one parent or the other being different. In science, this is called a parent of origin effect, where the genetics can be tracked to one parent or the other. The BabySibs Research Consortium hopes to study this in the future.
4:15
Comment From Guest

I have a 4 year old on the spectrum I also have a 2 year old and a 2 month old should I have the other 2 checked and if so when
4:16
As soon as you suspect that something is wrong, you should have a pediatrician or other healthcare provider evaluate your child for developmental disorder. Symptoms of autism emerge as early as 6 months of age. Here are some helpful links.
4:17
Here is a link to an early screener that you can fill out and bring to your doctor.
4:20
FROM ANGEL: I was wondering if there have been studies on boy-girl preemie twins.
4:20
Yes, the rate of autism is higher in infants who are born prematurely, and the BabySibs Research Consortium is looking at prematurity as a risk factor for autism. Studies consistently show that boys have a higher risk of autism, up to four times higher than that of girls.
4:22
Comment From MaryAnn

Do we know of ways to decrease the risk in pregnancy for future siblings at all?
4:23
In addition to family history, there could be many nongenetic influences to the development of autism. We are currently investigating these. A study came out that showed that prenatal vitamin use protected against autism.
4:27
Comment From Guest

The new findings in the siblings study indicate that genetics play a more influenctial role in family autism. would this suggest that environmental factors are less of an influence in autism? We have a 5 yo with ASD and a 4 month old. If we are carrying the genetic markers for autism could we influence whether our youngest manifests autism by avoiding potential environmental factors?
4:28
This study did not look at nongenetic factors. But in fact many siblings do share nongenetic influences. If you already have a child with autism, you should tell obstetrician and follow their guidelines and advice about a healthy safe pregnancy.
4:30
Comment From Lyda

I have a spectrum son and a recently diagnosed daughter. Was research done on the level of autism in the sibling and what does this mean for my newborn son (3rd) child?
4:30
In this study, the level of functioning was monitored in the older sibling diagnosed with autism and it did not influence the outcome of the younger sibling. In other words, the level of function in the older child did not account for the risk of autism in the younger child.
4:33
Comment From Cynthia

Where environmental factors presented at all in this study? For instance one child was born in one state and the second child in another area?
4:34
These factors were not examined in this report. However, the BabySibs research consortium is studying prenatal and infant influences in addition to family history. Here’s a link to that study:www.earlistudy.org.
4:36
Comment From Christin

Is there anything we can do from a preventative stand point?
4:36
Autism Speaks is supporting research looking at very early intervention. It may be possible to stop the progression of autism or prevent some symptoms from developing. So knowing the early signs is important. Early diagnosis leads to early intervention. Here again is the link to early signs and an early diagnosis checklist.
4:40
Comment From Guest

i have a 4 year old boy. I am no longer with his father. the man that i am with now and i have talked about having a child of our own…a big part of me really wants to have a child with him, a bigger part is not wanting to for fear of having another autistic child….is there any way to know what the chances are of me having another autistic child. if only there was prenatal testing available for autism, that way parents can brace themselves
4:41
While it’s important to know that family history is a strong influence in the development of autism, there are other nongenetic factors. Prenatal testing is not going to provide an accurate diagnosis. We don’t know how genes interact with other influences. But knowing that your next child may be at higher risk enables you to look for signs early and seek intervention that can improve function or possibly prevent some symptoms.
4:43
Comment From Bonnie

Hello I am a mom to 2 boys with PDD-NOS. These new findings are right on. My question is how will this change anything regarding early intervention or early screening?
4:43
Bonnie, we urge parents who have a child with autism to make sure they’re vigilant in monitoring the development of their subsequent children and to advise their physicians to do so as well–and to listen to their parental concerns. We hope that by doing so, all children who show early warning signs of autism will be monitored just as closely.
4:44
Comment From dsaie

Have there been any studies pertaining to the likelyhood of a sibling of an autistic person having a child with autism?
4:44
We know that family history is a risk factor for autism. But we don’t know the rate in offspring of people with autism or the offspring of relatives of people with autism. So we don’t know these numbers, but it’s reasonable that they would be higher than the 1 in 110 risk for the general population.
4:47
Comment From Anna

My 5 year old son has autism. What are the chances of my 11 month old girl having it and what should i watch for?
4:48
According to this study, if an older child has autism the chances of a younger sister being diagnosed are 1 in 9. So you should learn the early warning signs of autism by clicking the link below and also check out the video glossary that has clips of young children both affected and not affected with autism. Here again are the links:
4:50
Comment From Mitch

Is there any way of telling which parent carries the gene. I am dating a women with a 16 year old autistic boy and we were wondering should we want to have a child ourselves.
4:51
In this study, siblings had the same mother and father. We don’t yet have the numbers for children with one parent or the other being different. In science, this is called a parent of origin effect, where the genetics can be tracked to one parent or the other. The BabySibs Research Consortium hopes to study this in the future.
4:52
Comment From Guest

Did the study show a difference if the older sibling with a ASD had regression autism, where they developed typically then regressed, versus autism where the child never developed typically? Would the percentages differ if regression was involved?
4:52
The study didn’t address regression specifically. The researchers did look at overall level of function in the older child and found that it did not change the risk of autism for the younger sibling.
4:56
Comment From JoHanna

Is there any reason for the boys over girls with autism that you are aware of?
4:56
Johanna, this is a great question. There are many theories on why more boys are diagnosed with autism than are girls. One has to do with the location of risk genes on the sex chromosome. Some genes are located on the X chromosome and the extra X chromosome in girls may be protective. There are other theories that girls have different thinking and feeling styles than boys and are less likely to show symptoms.
4:58
Comment From Guest

Is the rate for susbsquent children having autism based on your other child that is diagnosed with autism or spectrum disorders??
4:58
Another great question. Thanks. This publication looked at the rate of autism spectrum disorders in younger brothers and sisters of children on the spectrum. The spectrum includes Aspergers.
4:59
FROM KATIE: What we need a study of vaccinated and unvaccinated siblings.
4:59
These investigators are looking at a number of things that happen during pregnancy and infancy that may influence the development of autism. To learn more about this study, follow this link to the EARLY STUDY.
5:00
Comment From Cathy

Just wanted to share that my 3-year old son participated in a Baby Sibs Study (at Yale) and it was a very good experience. I encourage other autism parents to enroll in these types of studies. They are extremely important to us all.
5:01
Cathy, thank you for your participation and your vote of enthusiasm about participating in a BabySibs study. If you all want to learn more–and possibly participate–in a BabySib reseach study, here is a list of sites and contacts …
5:02
We have time for a couple more questions. Forgive us that we were not able to get to all of your great questions and feedback.
5:02
Here is a link to the EARLI Study mentioned earlier.http://www.earlistudy.org/
5:05
Comment From Guest

In the study was there any correlation between the rate of ASD with length between births, birth weight, or length of gestation?
5:05
This study did not look at those factors. However, these have been identified as risk factors in other studies. The BabySibs research group is planning additional studies to explore the connections further.
5:08
Comment From Guest

If there is a family history of ASD behaviors, not necessarily diagnosed, how can we determine the risks or likelihood that future children will develop ASD? Are there preventative steps these families can take? Genetic Testing? Environmental changes?
5:08
I want to emphasize that this study did not exclude the role of nongenetic factors. However, we know that family history plays a very strong role in the development of autism. As previously mentioned, it is likely that genetics and outside influences work together, rather than separately. Further studies are in the works.
5:09
Thank you everyone for participating. Thanks so much for staying on for the full hour. Please continue to post your comments to our science blog at www.blog.autismspeaks.org. We look forward to the next chat!
Categories: Science Tags: , , , , , ,

How To Compromise With Your School District Without Compromising Your Child

August 15, 2011 30 comments

Join us on August 17th at 7 pm EST as Gary Mayerson discusses parent advocacy and answers your questions about what you can do.

Navigating the IEP process can be an overwhelming experience. Join nationally renowned attorney Gary Mayerson as he answers live questions from parents and explains what parents can do to secure effective and appropriate programming.

Gary Mayerson is the founder of Mayerson & Associates, a law firm in Manhattan that was formed more than a decade ago as the very first law firm dedicated exclusively to serving people with autism. To date, Mr. Mayerson and other lawyers at his firm have helped more than 1,000 families in more than 30 states, as well as military families stationed abroad. He also is the author of How To Compromise With Your School District Without Compromising Your Child (DRL Books 2005). In addition, Mr. Mayerson is a long-time board member of Autism Speaks and serves as the Director of the Autism Speaks Federal Legal Appeals Project, a pro bono initiative at the federal level.

Categories: Family Services Tags: , , , , ,

LIVE Facebook Chat with Kerry Magro Transcript

August 11, 2011 6 comments
2:52
Hi, I’m Kerry! I am really excited to be here with you today. I am excited to talk to you guys about my experience on the autism spectrum. Please feel free to ask me any questions you would like!
2:53
Comment From Michele

My Granddaughter is six years old, reads at 6th grade reading level, loves music and Pokemon and my question is she is in public school he has part time with special education and part time with her class. She has extreme fits of temper and I worry that she will not outgrow this? What do you remember from being so young and how did your family help and support you?
2:53
Hi Michele!
2:53
Comment From Michele

hi
2:54
From my experience, I had a difficult time transitioning from Public School to Private School. I remember the hardest thing for me was just adapting to change. So what my family did for me was try to focus on a similar routine no matter where I went, in regards to hobbies and activities to keep me focused.
2:54
Comment From Jennifer

My soon – to -be 3 year old was just diagnosed. At this age, she still is not talking. She will babbly out words here and there…but no sentences. Were you this way when you were small?
2:54
Hi there Jennifer
2:55
I was non-verbal til I was about two and a half and once at about that age I was very similar in regards to babbling and trying to pronounce words. It wasn’t until I was first diagnosed, at about 4, when I really started to notice a difference in my pronunciation towards words
2:56
Comment From Guest

Kerry- what was your functional level at 5 and what therapies did you receive (how frequently?) sorry if this is redundant! You’ll probably get this a lot. Congratulations on being a graduate, by the way. :)
2:56
Hi Guest! Thanks for the Congrats!
2:57
I remember when I was 6 I had physical therapy, occupational therapy, and speech therapy. It was the first time I started with those types of therapies. What I think I had the most trouble with was sensory integration with regards to different sounds and I think having the ability to be so involved with different types of therapies really helped me out a lot
2:57
Comment From Michelle C

Hi Kerry did you always have language. I ask because my son had language and was developing above average then suddenly lost skills at 2 and a half. He is now 4 and a half.
2:58
Hi Michelle – I started gaining language after I was about 4
2:58
Comment From Melissa

I am the parent of an 8 yr old with autism. As someone with autism what do you wish your parents and teachers knew. Jacob is high functioning but isnt able to answer questions for me. I feel like we cant completely communicate.
2:59
Hey Melissa – I think what I wish my parents knew was the nuts and bolts of an IEP. I think an IEP was something my parents really didn’t understand at the time and I remember it was difficult because my parents really never knew when I was earlier on the spectrum what kind of services I would need to include in the IEP.
2:59
I would wish that my earlier teachers in public school knew more about how to handle students with a learning disability. Not all of them were trained in special education.
3:00
Comment From April

Although you were young, do you recall anything specific that made talking easier?
3:00
Hi April! I started taking theater when I was about 5 and what I remember the best thing about it was even though it was difficult for me with words, it helped to build my self confidence a lot. It really made a huge difference in my early development
3:01
Comment From Guest

What was challenging in school for you? Are there any strategies that your teachers taught you that were helpful?
3:02
What was challenging in school was for multitasking in being in school. There were a lot of accommodations that I didn’t understand why I needed them. When I started noticing other students didn’t have the same accommodations I did, I thought something was wrong with me. It was hard because I didn’t think I was on the same playing field as them. I didn’t fully understand what autism was in my early years
3:03
In regards to strategies that my teachers always taught me was to always understand that everyone has something that makes them unique. Ideally everyone is going to go at their own pace
3:03
Comment From Guest

I have a grandaughter and she is three. They have not specifically said she has autism but she has alot of the same problems babling and having very uncontrolled mood swings. My question is are any of you guys medicated?
3:05
I was never medicated. My parents never believed in the concept of medicated me and focused strictly on different types of therapies because they were worried about the concept of me, ‘not being myself’
3:05
Comment From guest

what you thimk is best private school or public?
3:06
I think it varies. You really have to put a lot of work in trial and error. Really in talking to the schools and getting a sense where your child fits in. In my opinion, there were good parts in both when I attended public in my earlier years and private for middle and high school
3:07
Comment From Guest

what form of Autism do you have?
3:08
I was diagnosed with PDD-NOS ) Pervasive developmental Disorder Not Otherwise Specified. It is a more mild form of autism and if they don’t clearly have the traits of those with autism or Asperger’s
3:08
Comment From Michele

What did you major in and what are your future plans?
3:09
Hi Michele – thanks for asking. I majored in Sports Management and my future plans as of right now are to continue to work on my first novel, continue working on my website, and to hopefully do something in the field of marketing
3:10
Comment From Zach

Hello, Kerry! I’m Zach Posar, a 19-year-old High School Graduate with Autism. Coming near the end of this month, I will be moving to South Western Michigan College for Graphic Design. I would like some advice on how best to adjust to that kind of life.
3:11
Hi Zach – what I would say is that you really need to figure out your strengths and weaknesses and be prepared to really go through a big change in regards to your overall day. What I did when I moved to college at Seton Hall, I focused on trying to find similar routines that I would do at home that I could implement in college; such as a specific time to do laundry, to eat, etc. and so forth
3:11
Comment From Richard Hackett

Is this thing on? My comments are not being posted.
3:12
Yes it is working! We are trying to get everyone’s questions answered!
3:12
Comment From Mark DiSciullo

Hi Kerry…first off thanks for sharing your time and insights with us. I have a 4 year old son with Autism. (high functioning, non verbal, PDD) … What are your memories of being that young and do you recall any of your frustrations in trying to communicate or having family trying to understand what you were trying to say?
3:13
Hi Mark! Most of my early memories being on the spectrum include difficulty pronouncing words. I had trouble with letters and sounds and I remember being very vulnerable would always seem to have an easier time than I did. It made me less ‘out’ and in some ways avoid them completely.
3:14
Comment From Jenny

My son has PDD NOS and wants to work but doesnt want to go to college probably because his LD is so severe did you struggle with ld at all?
3:15
I had the same problem going into high school. I didn’t think that I wanted to go to college because my LD was going to hold me back. At many times growing up I was told I would never get to college- that it wasn’t a possibility for me. It was definitely hard going through a lot of experts telling me I couldn’t do something. I proved a lot of people wrong and there is a lot to be said for giving your all and accomplishing your goals.
3:15
Comment From Kelly

What kinds of symptoms do you still have? Do you think those will ever go away?
3:17
One symptom that is very apparent in my life today is being touched by other people. It has always been a difficulty for me. I would always refuse hugs and something would tell me that it wasn’t okay. It has gotten a lot better, but when it is a surprise and get a touch or feeling from someone it bothers me. That is one symptom that has stayed with me.
3:17
Comment From Julie

Do you have any anxiety or anger management problems? My 28 year old son seems to escape using video gamd
3:18
Growing up when I was 6 years-old I was referenced by a doctor as emotionally unstable and without proper therapy I would have to spend the rest of my life in a mental institution. My parents spent a lot of time talking to the different therapists I had in regards to making the sessions as nurturing as humanly possible. I think overtime I really conquered my anger management issues. I still get anxiety from time to time but it isn’t as severe
3:19
Comment From Amanda

Hi! My son just turned 7, he has the same (PDD-NOS). At what age is a right time to explain to my son that he has Autism?
3:20
Hi Amanda! I was first told that I had autism when I was 6. The difference for me was I never understood what it meant until I was 11 or 12. My parents would tell me I was autism, but it would never connect that I had something wrong until I matured a bit.
3:20
Comment From Guest

What were your social interactions like? Family, friends, etc.
3:21
My Social interactions in my early childhood were focused specifically on my family only. It was very hard making friends and building my social interactions skills because I moved around from school to school to find the best accommodations for me possible. It wasn’t until middle school where I really found my place where I got to spend a few years in a program when it became easier for me to make friends.
3:22
Comment From Josephine

How long will you chat with people asking questions
3:22
Hey Josephine – I am on until 4 o’clock but I answer emails atkerry.margro@autismspeaks.org
3:22
If a question wasn’t answered today, please feel free to email me and I would love to get back to you!
3:23
Comment From Becky

How do you keep your attention focused on schoolwork? I’m a Sophomore in University with Aspergers, and my hardest thing to deal with is keeping myself focused and not letting my attention wander to things I consider more fun. Any suggestions?
3:25
Hey Becky! I think one thing that helped me a lot was having a recorder for all of my classes and having that accommodation because it gave me more of a safety net that I didn’t have to too focused on paying attention and I can just focus on the most important now and can come back to the other stuff later. That really helped me a lot
3:25
Comment From Karen

What support did you have while in college?
3:26
I had support through a disability support services on my campus. I would say that as a learning disabled student in college I received reasonable accommodations. I had extra time on tests, a laptop in all of my classes, a recorder as I had mentioned, a note-taker(another student who would take notes for me) and a private room to take all of my exams.
3:27
Comment From Brian

Hi Kerry, I’m Brian. I’ve been diagnosed with Asperger’s Syndrome, how important did you feel it was to make friends when you were growing up?
3:28
Hi Brian – I would say that is was somewhat important to make friends when i was growing up. I was an only child and in some instances that hindered my social interactions to a point. It made it more important to focus on making friends. It really didn’t become very important until I was in middle school or high school.
3:29
Comment From Michelle H.

How did you make friends in college?
3:30
I made friends by joining as many organizations as I could within the first weeks of college. My thoughts going into college was always to put myself out there and if I did that then everything else would come easy. So I guess the best advice I could give is to advocate for yourself and try to push yourself to areas you didn’t think you could go to
3:30
Comment From Zach

Incase you didn’t get this: What’s your advice for after College?
3:32
My advice for after college would be to focus on something you know you have a great strength in and pursue those strengths. After college I knew I had a strong interest in sports and marketing. With that in mind I have tried to effectively put that into play. I have an interview with ESPN in 7 days!
3:32
Comment From guest

did kids pick on you
3:34
Bullying has been an ongoing battle for me. Through my entire education experience, from grammar school through college. In public school the kids would pick on me who weren’t in my special education classes. The kids who would pick on me were those who thought I was different. They didn’t know a lot about me and just thought I was different. What was different to them was something they didn’t want to deal with. Early on there was a lot of bullying on. My parents always told me that some people are born with hate and there is really nothing you can do about it. There is nothing wrong with you, you have to ask what is wrong with them?
3:35
Comment From Guest

Did you play any sports?
3:36
Growing up I played tennis, soccer, basketball, bowling, and chess. My parents really tried to advocate for playing sports early on. I had difficulty with motor skills growing up and they saw it as a new brand of therapy, which would ultimately help me in the long run.
3:36
Comment From Melissa

should I home school my child or do you think it best to get him out in the world?
3:37
It really varies depending on the diagnosis of your child in regards to where they fall on the spectrum. If your child is on the high end I would consider letting them go to school just because I think social interaction is very important for individuals on the spectrum to to, but if they are on the low end I would play it by ear and just see what you are more comfortable with and go from there.
3:38
Comment From Crystal

Hey Kerry! Thank you for giving your advice and sharing your personal experiences with all of us! Do you feel like Autism has made you a stronger person?! :)
3:39
I feel like I have been going through a lot of struggles in my life and they have made me who I am today. With autism I know it was hard early on especially with speech and different difficulties, but I think autism has pushed me to become a person always wanting to do more and someone who always just wanting to try for a better tomorrow in many instances
3:39
Comment From Diana

Did you ever have to deal with a major move? Perhaps to another state? What did you do to adjust?
3:40
I was born and raised in New Jersey so I never had to make a major move. In my first four years of grammar school I attended three different schools. It was hard, but it really taught me that there is a lot of variety out there. I understood different types of cultures and surroundings and I think that helped me with my early intervention even though there were difficulties that came along with it.
3:41
Comment From Alexia

When you were younger did you obsess over certain things like certain tv shows or did you have any stims that you could not control? if so have you overcome this now?
3:42
I was obsessed with Teenage Mutant Ninga Turtles and Power Rangers for a good six or seven years and it was one of the biggest obsessions I have had in my entire life. With that I became obsessed with television in general. I started to get double vision when I was about 8. There was a difficult transition from watching a lot of TV to a little bit of TV. I found other interests that helped me pass the time
3:42
Comment From Jenny

Do you tell prospective employers that you are Autistic?
3:44
I don’t tell prospective employers that I am autistic until whether I know I got the job. I do this for several reasons, but one of the main reasons is I am aware that people in the world are not very knowledgeable about what autism is and what it isn’t. I know as an adult I can receive reasonable accommodations in the workplace. If i got the job I would tell them I was autistic, but if they asked me in an interview if I had a disability(which they can’t) I wouldn’t answer
3:44
Comment From Kelli

Did you ever have any pets? I have read that some benefit from therapy dogs at home/school.
3:46
My mom actually had 9 cats and early on I was only comfortable really interacting with holding and touching cats. I definitely think there is a therapy in regards to this with parents who have individuals on the spectrum. It is trial and error, but I have a friend who has an autistic son who is scared of dogs and all animals because of the sounds they make. It really depends
3:46
Comment From Guest

You have been very helpful to us today. Do you plan on becoming an advocat for Autism?
3:47
I hope that I do become an advocate for autism in many instances. Throughout my life I have been very involved in community service and in trying to make a difference in the lives of others. As I mentioned others, if there is any way I can assist in answering emails, please let me know. That is the reason I am here today!
3:48
Comment From Patrick

Do people make fun of you with autism kerry?
3:49
Early on kids would make fun of me because they could obviously see I struggled with a few things here and there. They would act out on that and it was very hard early on, but as I got older and as I started surrounding myself with more mature individuals I noticed a difference. In college, there was a minimum of people making fun of me and people with learning disabilities in general
3:49
Comment From Michelle H.

How did you decide to start the Student Disability Awareness Club?
3:51
I started doing disability awareness because there wasn’t an organization like that on my campus. I wanted to leave my college experience knowing that individuals such as myself with a learning disability would ultimately have someplace they can feel a family/community environment from. That is why I began
3:51
Comment From Greg

Speaking of kids. What are you’re thoughts and/or plans about having children of your own?
3:52
I have thought about this a lot and I really want to have kids someday and I think i will. I don’t think this is going to happen for a while, but I have always kept myself open to the opportunity to do that.
3:52
Comment From Kelli

Do you think that they will a cure someday?
3:53
I am very optimistic. I think that with how much modern science and technology have gone there is the possibility. In the end though, I really think i have embraced having autism and being autistic and I think that as a community we should aspire to, yes it would be great to have a cure one day, BUT we need to also embrace who we are and the concept of equality
3:54
Comment From Guest

What about dating/marriage/kids?
3:55
I didn’t really have my first real relationship until I was about 19 – once I had my first relationship, I didn’t really know what the norm was for relationships at all. All I had at my disposal was what I read about and the internet. Dating has grown leaps and bounds in the past years, but it is still something I am working on.
3:55
Comment From Diana

Did you have difficulty when it came time to learn how to drive?
3:57
I didn’t get my driver’s licence til I was 18 and even then, there were a few difficulties in regards to riding after a certain speed. For about a year I could only drive in and around cities – I was very intimidated of driving on highways where I would have to drive faster. It took a lot of experience to get behind the wheel everyday.
3:57
Comment From Dorrie

what kind of support system do you have? do you come from a large family? do you have supports in a faith?
3:59
I have a great support system at home in regards to my mom and my dad who have done so much for me. In regards to faith, I’ve been a Christian ever since I was 5 years old. Many times I have questioned my faith due to my disability, having autism, and thinking how and why could this happen to me and ultimately why was someone doing this to me. Early on, I didn’t understand why but now I have a better concept of faith because everyone deals with challenges. It is really how you fight through those challenges is what faith and what religion is telling us to do.
3:59
I would just like to thank you all so much. This has been a wonderful experience talking to all of you and hopefully I can answer more questions in the future for you
4:00
My email is kerry.magro@autismspeaks.org if you’d like to reach me and check me out on the Autism Speaks Official Blog!
4:00
Thank you!!!
Categories: Autism Speaks U, Awareness Tags: , , ,

Kerry Magro to Host LIVE Facebook Chat

August 8, 2011 6 comments

Kerry Magro will be here on Thursday, August 11 at 3pm EDT to host a LIVE Facebook Chat. Kerry, an adult who has autism, is a recent graduate of Seton Hall University and active member in our college program, Autism Speaks U. He started the club Student Disability Awareness on campus to help spread awareness and raise funds for those affected by autism. Please join us as Kerry shares with us what it is like to live with autism.

To join the chat, visit our Facebook Tab!

Categories: Autism Speaks U Tags: , , , , , ,

’100 Day Tool Kit’ LIVE Facebook Conversation

June 23, 2011 5 comments
5:07
Hi Everyone!
5:08
Thanks for joining the chat today!
5:08
We apologize for our technical issues!
5:08
Today’s chat will focus on supporting families whose child has been recently diagnosed with autism. Most parents wonder: What do I do next? Where can I learn about the diagnosis? How will this affect other family members? Today, we want to help answer these types of questions. We expect to get more questions than we are able to answer, if you still have questions after the chat, please contact the Autism Response Team at 888-288-4762. Thank you for your participation in today’s chat!
5:09
Comment From Jennifer  

Should a child be on an IEP if they have aspergers?
5:09
Hi Jennifer!
5:10
Yes, every child who has developmental concerns should have an IEP involving assessment that determine the child’s strengths and weaknesses
5:10
From there recommendations can be made to support the child in an educational program
5:11
Comment From Guest  

My child is being tested for Autism…He is 2 1/2. What should I expect with the tests?
5:11
Hello Guest
5:12
Good diagnostic assessment treat strengths and weaknesses including language, cognition and other skills
5:12
This will be very important in setting goals and intervention plans
5:12
Comment From Guest  

my grandson is almost 3 and I’m sure is autistic yet his parents won’t acknowledge it at all!! He needs help
5:12
Hi there!
5:13
This is a very common concern of grandparents
5:13
Sometimes it is difficult to know how to approach the parents so that they are open to taking the next steps
5:14
One approach is to recommend to the parents to get an evaluation
5:14
If there isn’t anything there, they can let it be. But if there is something, the child will benefit from early intervention
5:14
It might be good to suggest to them that you will accompany them to the assessment. The more support the better!
5:15
It is also good to give them time to process, but not TOO much time where the child loses the benefit of early intervention
5:15
Comment From Jesse  

My neice has Autism and Im wondering will she ever be able to function in the world when she gets older?
5:15
Hi Jesse
5:15
YES!!!!!!!!!!!!!!
5:15
It is well known that all children with autism make developmental progress
5:16
In terms of how much or how can not always be sure. It is up to the family to make sure the child gets high quality intervention and is in the correct setting. The more support the child gets, the better the outcome.
5:17
Comment From Traci  

I have sent 2 messages and they never show up
5:17
Hi Traci!
5:17
We are trying our best to answer everyone!
5:17
We are so happy that you are all here and asking questions
5:17
Comment From Sandy  

We’ve just been diagnosed yesterday. Our 5 year old son has ADHD and PDD-NOS. Our concern right now is that every resource around here has a 2-4 month wait period. I’m wondering what we can do now before the socialization groups are accessed.
5:17
Hi Sandy
5:18
Have you ordered the 100 Day Kit?
5:18
Here is a link, where you can download it for free
5:19
You may want to ask the professionals who evaluated your son what you can do at home in the meantime
5:19
The more the parents are involved in intervention, the better the outcome
5:19
Stress to the professionals that you need training on how best to intervene
5:19
Comment From Brandi  

HELP! Trying to decide between ABA therapy and floor time therapy. Pros and cons???
5:19
Hi Brandi!
5:20
In this case, you must ask, in what therapy will the child make the most progress?
5:20
Again, this comes out of good assessments in finding what the child’s strengths are
5:20
Based on that you should be able to pick the appropriate intervention that will garner the best outcome
5:20
Comment From Jennifer S  

We are about a month past our First 100 days and I wanted to thank you for our First 100 Days Tool Kit. It is priceless and an amazing resource. I carry it with me everywhere just to show people how amazing Autism Speaks is! Its a great way to get people excited about the walk, it shows where the money goes!
5:21
Hi Jennifer!
5:21
Thank you SO very much!
5:21
Our Mission At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.
5:22
We want that kit in the hands of every parent at no cost
5:22
Families can call 888-288-4762 to get a hard copy of the kit
5:22
We love how valuable the kit was for you
5:23
Comment From Cynthia  

How can I explain my 5 year old that his brother has autism??
5:23
hi Cynthia
5:23
It is very important that parents explain to siblings that their brother or sister has autism
5:23
It is important to spend time talking with them and explaining what it means
5:24
It is also important to listen to their concerns without judgment
5:24
It is important that you establish the groundwork for an open communication
5:24
Let them know that is is okay to ask any questions and you will be there for them
5:24
The hard part is finding out what age appropriate terms you should use
5:25
I suggest you check out our resource library
5:25
We have lots of books that explain all of this to siblings
5:26
Comment From Emilio  

Hi everyone! Our 3 year old was diagnosed with High Functioning Autism at 2 years and, even before then, we knew something was different due to several milestones he was not making. We immediately began Early Intervention, At-Home Teaching and Training and now, because of our great community-based EI, OT and ST organizations, Artie is doing fantastic! He has made so much progress and is even enrolled in an ELP class and has fully integrated with Mainstream Students! We are SO proud of him! I cannot emphasize enough how important Early Intervention is and how important it is to work with your child at home!
5:26
Hi Emilio
5:26
I cannot emphasize enough how important early intervention is and involving parents.
5:26
THEY ARE KEYS TO SUCCESS!
5:26
Thank you for inspiring other parents with your successes
5:27
Comment From Patty  

What type of doctor is most qualified to make a diagnosis? Have been to 2 neurologists and still not completely comfortable w/their diagnosis.
5:27
Hi Patty
5:28
Starting with your pediatrician, you should be able to get a referral to a developmental pediatrician, neurologist, or psychologist
5:28
Because autism is a behavioral disorder, it is diagnosed through observation
5:28
and a careful history of the child
5:29
It is important to get a second opinion if you have additional questions about the diagnosis
5:29
There is no ‘one siz fits all” for autism spectrum disorders
5:30
Different professionals can see the child differently
5:30
Again, another reason to have more than one opinion.
5:30
Also keep in mind that no one knows your child better than you!
5:31
it is important to bring a support person with you to the evaluation to be sure you are hearing the same information
5:32
Then you can discuss this with the support person after the session. It can be very overwhelming and hard to absorb
5:32
Comment From Marilyn  

Hi my Daughter is 8 years and she just been diagnostic with autism
5:32
Hi Marilyn
5:33
Although this may considered a late diagnosis, you are welcomed to call and get the 100 Day Kit
5:33
It will help you still!
5:33
Comment From Guest  

How do I know the severity of my child’s Autism?
5:34
The process of doing an assessment when developing an IEP will provide us with a description of strengths and weaknesses
5:34
From there you will be able to set appropriate goals and intervention plans
5:35
Although many different healthcare professionals can diagnose autism, it is important that more than one disciplines be involved in assessing your child
5:36
This may not happen at one visit, but the professionals are communicating their prospectives with one another
5:37
This includes psychologist, OT, speech and language therapist, pediatrician, specialty physician, etc.
5:38
The value of these assessments is that the family take back information to the agency or school district so that the agency can better understand the child and advocate for them
5:39
Comment From monica  

iif a child has been diagnosed by doctors saying he’s pddnos but the school says different. what should I do?
5:39
Hi Monica
5:40
There are differences in opinion with diagnosis
5:40
It all traces back to the assessment process and understand those differences and why they exist
5:40
I would recommend that professionals speak to one another about this issue
5:42
Comment From Matt  

I have a problem with the concept of stimming
5:43
Hi Matt
5:43
Stimming is often considered odd repetitive motions that can be very apparent or more subtle
5:43
Unfortunately these behaviors can be very persistent and intense
5:44
The important thing is to understand that the behavior and consult with professionals in order to minimize the behavior that may be interfering with the child’s functional ability
5:44
The idea is to get help to manage the behaviors
5:45
Comment From Brian  

What symptoms can we look for in a child who may have autism?
5:45
Hi Brian!
5:46
The big three areas are communication, social symptoms, and repetitive behaviors
5:46
We have a page that goes into more detail on each
5:46
Comment From Guest  

my brother has autism and i was wondering does autism children have picky diets??
5:47
Hi There
5:47
Many people with autism are picky eaters or have aversions to certain foods
5:48
A great way to work on nutrition is to set up a regular structure for meal time
5:49
In that mealtime, include at least one food that your child has eaten in the past and liked
5:49
BUT also include a food that your child or sibling may have an aversion to
5:50
It’s a good idea to start discussing this with your family pediatrician
5:50
It is important the individual with autism is getting the right nutritional intake
5:51
Comment From Rhonda  

Please explain what things like PDD-NOS mean. Thanks
5:51
Hi Rhonda!
5:52
It is a form of autism spectrum disorder that meets the criteria that of a person with social difficulties, but not in both communication and restrictive repetitive behaviors
5:53
It can also be used to diagnose children under the age of three that don’t have clear difficulties
5:53
Comment From Sarah  

how often should children be re evaluated?
5:53
Hi Sarah!
5:53
This is a really good question
5:53
Typically children get evaluated annually through the IEP process
5:53
As parents you have a right to call an IEP meeting at any time
5:54
You can discuss your concerns – this may include an evaluation. That should be considered by the IEP team
5:55
We recommend parents work closely with their pediatrician and if parents have concerns, the pediatrician can support them in getting their child’s needs met
5:55
Comment From AnQi  

is the 100d ays kits free of charge?
5:55
Yes!
5:55
Anyone can download the Kit for free
5:56
You can request a hard copy of the 100 Day Kit by calling 888-AUTISM2 (888-288-4762). Parents of the child must request the kit.
5:56
We are so happy that we’ve had all of these participants, but are so very sorry we haven’t been able to answer everyone’s questions
5:57
You ALWAYS have the options of calling the Autism Response Team to speak to a coordinator at 888-AUTISM2 (888-288-4762).
5:57
It is so important that you all chose to come here to ask questions
5:57
By asking questions, you are providing vital stepping stones to ensure your loved one with autism has a successful future
5:58
Having a child with autism requires that we are comfortable doing more for our children
5:58
Active intervention on our part is a way of life!
5:59
Here is how you can get a kit
The 100 Day Tool Kit is available to download for free at:http://www.autismspeaks.org/family-services/tool-kits/100-day-kit
Aspergers /High Functioning Autism Tool Kit
http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
Manual de los 100 Dias
http://www.autismspeaks.org/family-services/tool-kits/manual-de-los-100-d%C3%ADas
Parents whose child has been diagnosed in the last 6 months may request a complimentary hard copy of the 100 Day Kit by calling 888-AUTISM2 (888-288-4762). Parents of the child must request the kit.
5:59
The 100 Day Kit is broken down by sections
6:00
1. About Autism- what to expect, define autism, what causes autism, prevalence2. You, Your Family & Autism- your family- addresses the family’s reaction to their child getting diagnosis, what you and extended family can do

3. Getting Your Child Services- navigating Early Intervention agencies, educational system,etc.

4. Treating Autism- different approaches to treatment, How is autism treated

5. Making It Happen-assembling your team, books ad websites
Appendix:
Action Plan for Next 100 days
Autism Safety Kit
Useful Forms
Glossary
Your local resources- Resources form RG: includes local resources: State Info, Schools, Waivers, Local Autism Orgs, AS Communities
6:00
In addition, another great resource is the Autism Video Glossary
6:01
Online video glossary to help you identify the early signs autism I young children
Glossary contains 150 video clips, available free of charge. It helps to understand words and terms used to describe autism. It also showw examples of social reciprocity, Joint attention, Sensory defensiveness
6:02
Thanks again so much for being here – we look forward to the next chat with you!
6:02
Your advocacy truly makes a difference and we look forward to a future of open dialogue!
Categories: Family Services Tags: , , , , ,
Follow

Get every new post delivered to your Inbox.

Join 999 other followers

%d bloggers like this: