Friday, December 9, 2016

One Way Autism Genetic Testing Can Help You LIve a Better LIfe

Thank you all for continuing to log into Autismdaybyday for the past 6 months, while I've been quite. All of the loss in our family - my mom, our dog Shadow and my daughters 13 year old reptile - left me with nothing to say. I'm still a bit numb and speechless, and at the same time I can feel my voice coming back as I come to grips with our new normal.

Nonetheless, as all you mom's know, life and it's demands don't stop, no matter what. Nick still wakes up in the night, he still has to be on the bus at 6:30 am he still needs 24/7 care and even though I've not been emotionally fully present, life had to go on, so we've been busy not the less.

On of my busy things was getting a new genetic test for Nick. The last time he was tested was just after diagnosis. The test didn't show anything, and it was my hope that with all we know now the test might reveal a little more.  Well, I was wrong. He just did the microarray genetic test that looks for chromosomal abnormalities, and it came back negative. Which tells me we are doing so much but still know so little. It's good to know Nick has no chromosome mutations, however, it would be better to have gotten some understanding as to why my precious child has autism, or shall I say why any of our children have autism.

But, it's not over yet. We will move on to the next test which is more detailed and unlike the first test which typically does not reveal anything about autism, more in-depth testing has been successful in providing insight when the child has a co-morbid condition, and in this case with Nick's Epilepsy. This is the one way Autism Genetic Testing can help people live a better life, today. Successful identification makes it possible to select the drugs that will be the most successful in treatment, which may not be a cure but I would appreciate Nick only having to take medication that makes a difference.

Still when all is said and done nothing much has really changed since Nick was first tested 15 years ago. The tools are a little better, and yes they have a bit more knowledge overall, but when it comes to taking that knowledge and directly helping out kids; when we get there nobody knows.



 



Monday, September 26, 2016

La Vie En BLUE Fashion Gala - Autism Speaks Southern California

For anyone who loves fashion, or if you're just looking to have an amazing time this week and at the same time raise money for a great cause, check this out....

And here is a link to the information;  La Vie En BLUE Fashion Gala - Autism Speaks Southern California

Cheers,
Donna 

Thursday, September 22, 2016

How Google Glass for Autism Can Get You Your Hearts Desire!








http://video.cnbc.com/gallery/?video=3000553150  - Story on CNBC
Google Glass flopped in the general market, however, the folks at Standford did not overlook the potential benefits to other markets.  They recently developed a new use for Google Glass: Helping children with autism improve their understanding of facial cues.  

Seeing Nick consistently and correctly respond to facial cues would be a game changer! Until you've met a person who does not have this skill it's impossible to understand how vulnerable it makes them, and the many ways in which it makes it impossible for them to respond to, fit in and connect with others in the simplest ways. 

For those of you who don't know what I mean, try this; Ask someone to shoot you every look they use to convey a non-verbal message (they can include hand gestures if they like) and then think what that tells you, and how you would act differently knowing that information.  For example, you see a creepy look so you move away, a sad look and you feel concern, maybe step closer and ask "what's wrong"? You Get The Idea...

Then have them shoot you the same looks, make the same gestures while you have your eyes covered.  Notice your response...
Now you know what it's like to have autism and not be able to read social cues.

Hey Google, when will this be available to families? 


http://video.cnbc.com/gallery/?video=3000553150  - Story on CNBC


Autism Glass Project  Link to the Stanford Program


Thursday, September 15, 2016

Why Autism and Exercise are a Blankety-Blank!

"He's the fastest athlete I have... 
if only he would run toward the finish line! "
Nicks APE Coach

This is how Nick feels about exercise! Let's face it without the social motivation of winning as the goal, sports just don't have the same pull.  

In this case, Nick preferred sleep over playing basketball!. His sport of choice jumping up and down. The result great legs, but he only does this when he wants too which means it falls short of an exercise routine.  As most of you know he's enrolled in soccer now and I'm excited to see how it goes. He won't run to get a goal, but he's staying in the game and going up and down that court, which is amazing for him (again refer to the picture above).  


In time, maybe in time. 

Friday, August 26, 2016

The Key to Happiness and Longevity...Friends. I Thank God for Mine

videohttp://www.thebos.co/p/KZUWXG

My dear friend, Deniece Williams (Yes the singer) makes sure I get out from under my responsibilities when she comes to town. Thank goodness for friends and laughter.

Tuesday, August 23, 2016

The Simplest Ways to Make the Best of Airports and Autism


Any parent will tell you travel is a nightmare for families traveling with an autistic child, so much so that many families just stay home. The first time I took Nick on a plane the only tip I was given, was give him some Sudafed and it will knock him out.  Which I later learned was the “go to” plan for many families. Today as corporations like Disney reduce supports for families impacted by autism – in environments known to be very stressful which trigger negative behaviors for children with autism - others are embracing our children and making efforts to accommodate them.  

Two airports have stepped up to improve the travel experience and accommodate families!  First Delta, in partnership with Hartsfield-Jackson Atlanta International Airport and autism advocacy group The Arc, launched the Atlanta Airport’s first multisensory room on April 12 to provide a calming, supportive environment for passengers on the autism spectrum and now a room opened inside the Myrtle Beach International airport in South Carolina to help families with autistic children by providing a designated quiet space to decompress after a flight.

The rooms features include pillowed and cushioned cubicles and seats marked with the words “Quite”, a mini ball pit, bubbling water sculpture, a tactile activity panel and other items children can interact with to help calm and prepare them for their travel experience. 

If you dig you will find that a parent of a child with autism drive this type of change, and this instance is no exception.  Delta First Officer Erich Riese, who has a 9-year-old son on the autism spectrum was the voice of the program for Delta. He even came over the intercom on the day the room was opened to provide travel tips and best practices based on his personal experience. These tips include:

-Prepare children for the upcoming trip by reminding them of it regularly
-Book a window seat near the front of the aircraft
-Pack a small carry-on bag containing comforts from home
-Board last as it minimizes the time spent on the airplane

“When my son was born, I couldn’t wait for him to be old enough to travel with me,” Reise said. “When doctors diagnosed him with autism, we looked at his diagnosis as a positive. Instead of traveling less, we traveled more… The key is to simplify, simplify, simplify.”

It's only two airports right now, but I do hope others will follow.







Thursday, August 18, 2016

What the Public is Saying About Regional Center Service Disparities to Latinos and Blacks

If you are concerned about the differences in how regional centers are providing services, particularly to Latinos and African-Americans, we encourage you to attend:

PUBLIC HEARINGS
on Service Disparities

Sponsored by 
the California Department of 
Developmental Services

The Department of Developmental Services will hold four public meetings to consult with stakeholders, including consumers and families, advocates, providers, and protection/advocacy agencies, to review purchase of service data and develop recommendations to help reduce disparities. Discussion areas will include identifying cultural barriers and challenges in obtaining regional center services and the areas that need clarification for people to understand the service delivery system, as well as, plans and recommendations to promote equity and reduce disparities in the purchase of services.

THERE WILL BE TWO HEARINGS IN SOUTHERN CALIFORNIA ATTENDED BY SENIOR DDS OFFICIALS:

INLAND EMPIRE:
Thursday, August 25, 2016
9:00 a.m. to 12:00 Noon
Molina Healthcare
Molina Aliso Beach Conference Room
550 East Hospitality Lane, Suite 100
San Bernardino, CA 92408
On-site translation will be provided in the following languages: Spanish, Mandarin, and Vietnamese.

LOS ANGELES COUNTY:
Friday, August 26, 2016
9:00 a.m. to 12:00 Noon
South Central Los Angeles Regional Center
2500 S Western Avenue
Los Angeles, CA 90018
On-site translation will be provided in the following languages:  Spanish, Cantonese, and Korean.

For more information - Click here

Let's get a big turnout.  Please join us!

Tuesday, August 2, 2016

10 Things about Special Day Class (SDC) Schools Don't Want You To Ask

The first special day class I visited for Nick confirmed every negative stereotype I had in my brain convincing me that Nick should ever be placed in one.

Over the years I've come to question if any child with autism could reach their potential in an SDC setting, yet I know there are little or no alternatives for many of our kids. What I know now is, it is possible when viewed as something we shop for, vs something we just accept or take for granted.


The big idea here is too many SDC's and the teachers who run them are still operating from the perspective that our children will never developmentally grow beyond elementary school.  As a result, they set the bar low and our children suffer, never getting the opportunity to reach their full potential.
Sadly many SDC teachers are still treating students, even in high school, like babies, their "special children" unaware their perceived limitations of each student are part of the problem. For years I thought this would change, but when Nick came home from summer school last week with a "Certificate of Excellence" in an owl cut out aimed at K - 2, my first reaction was "Really....why the heck are you treating my 18-year-old like a child?"  Another reminder change is slow, and we have to teach teachers too!
Ten things you need to consider when placing your child in an SDC? 

1. Does the room feel age appropriate? If the classroom, is not in elementary school, but it looks like one the setting screams, we think your child will always be a baby! 

2. Do conversations between students, teachers, and aids sound like they are talking with a kindergartner?  Individuals with developmental disabilities should be spoken to in a normal fashion, and not talked down to, no matter their age. 

3. Is the class engaged in age-appropriate activities?  I don't mean activities should not be modified for each student. What I mean is does your 17-year-old come home from a field trip with a paper hat on his head?! 

4. Do class activities reinforce negative stereotypes of special needs children? Are they asked to line up and walk single file to the cafeteria in middle school...when the other students are not?  If you're not sure, just channel your inner 10 to 18 year old, and consider the things SDC students did that you laughed at. 

5. When you go in the room, does the teacher sound like a teacher or a parent? Teachers should always sound like instructors, leaders, a person of authority. Teachers who coddle our children often fail to see their potential and instill confidence to achieve more. Pity only stunts their growth. 

6. Are the SDC students being isolated from the typical students during lunch, recess, and other nonacademic activities? When SDC students are not included as much as possible in the general education population during lunch, recess, and other nonacademic activities everyone loses. The general population is denied the opportunity to learn about diverse populations, which will be critical in a world where 1 in every 54 individuals has ASD. In turn, our students are not given the opportunity to mirror and learn from the general ed population.

7. Are you welcome to visit the class at any time? Be skeptical of any classroom where parents are not welcome. No matter what anyone tells you about a classroom the only way to really know how it is run is to see it in action. Yes, you have to follow the school rules, which vary from campus to campus, but you are legally entitled to observe during school hours. 

8. Does the SDC have a process for generalizing the skills learned in the classroom? ASD students memorize information, which is often not retained over time when they are not taught to apply the information in their day to day lives. No matter how many academics are taught, if the SDC cannot demonstrate a plan for each student to generalize skills into the world outside of school, your child may graduate school a social and functional illiterate filled with information that cannot be used to achieve or further their independence. 

9. Does the SDC teacher have experience working with the unique needs of children with autism?  Too many educators are still unaware of the unique and often complex needs of children with autism.  Don't let the small classroom fool you into believing each child is being well servicedChildren with autism, down syndrome, epilepsy, and an array of other disabilities all have unique needs and learning abilities and styles. there is no such thing as a one size fits all when it comes to teaching. 

10. Is your child showing measurable growth in his SDC?  The school expectations for our typical children are pretty universal, and it's easy to let society, our school system, and educators pull our children along the milestones of an "educational" path. On the other hand, due to their individual needs, there is not a universal standard of milestones for special needs chidren. As a result, it's far more difficult to measure our children's progress and map where they are in the process. A great teacher has a plan and understands the goal is independence.  A qualified teacher will help you understand your child's academic/school goals and can tell you how they apply to their eventual independence.

If any of these things are happening in your child's SDC, don't give up, talk. I've found that most teachers want to do a good job, and many have just never been educated about our children. And if you find the teacher won't listen, or can't hear you, go to the next person in charge and express your desire  is not to be disruptive, you just want to help to create a better setting for you child and the other students.  





Monday, July 25, 2016

Unarmed Behavior Therapist Shot While Working With Autistic Client

This is one more in my series of be afraid, be very afraid. Imagine your autistic son on a walk with this behaviorist, someone calls 911 because they think the autistic mans toy truck in a gun and when the police arrive despite the therapist calmly explaining the situation (while laying on the ground with his hands up) the police shoot the therapist.  They explain they were actually aiming for his client! What the heck! All I can say is the therapist handled it perfectly, and if you work with behaviorist you might want to see what training they have in the event of police engagement.  Random or not, this shows what is possible and we are better of if we prepare those around us.





Wednesday, July 20, 2016

The Future of Autism


Does anyone else wonder why it is that High School Graduation marks the beginning of an exciting journey for typical teens, and in contrast it's the end of the road for individuals with Autism?  

A conversation with a typical teens. 
Congratulations, you graduated and we're so proud of you. Now go to college, or travel, or get a job. Have fun, learn, make mistakes, try on what fits to see what you want to do with your life.


A conversation with a teen with autism: 
Congratulations, your parents took you off the diploma track so you can stay in HS for 3 more years! You will have a place to come everyday until you turn 22!  After that, well you go home and your folks help you figure out how to fill your day.

Opps, your family didn't know what had to be done to continue your education a few more years :(, and you're not college material?  Congratulations you graduated!!! That's it, go home and be proud. Take a break until your family finds programs to help fill your day.