Autism and Sleep Deprivation - A Family Problem and New Study May Give Clues

Two things that don't go together in our house, sleep and Nick! Never have, maybe one day they will! 

A study published in  September's Sleep Medicine has developed and validated a new cut-off value for the Children’s Sleep Habits Questionnaire for autism (CSHQ-autism), a common tool used to screen for sleep difficulties in autistic children and adolescents up to 17 years of age.

Poor sleep is a side effect of  Autism you rarely hear about. Yet over time it drains a family as much as any aspect of autism and offers up a host of serious negative health consequences from heart attacks, to stroke to diabetes.  
Nick is 23 and he has NEVER been able to sleep through the night without assistance (Drugs both OTC/Prescriptions). Every night I put Nick to bed, then I put me to bed. I roll up in the sheets, settle in hoping that tonight will be the night I sleep all the way through! Around 2 AM, I hear Nick jumping, scripting language from videos, and vocalizing things that are not words, just sounds and yelling "Mom". So, no tonight is not the night.

 
This is my life, and as a result, I have been sleep deprived for his entire life. From birth he suffered gastrointestinal problems, and his tummy pain left we up all night trying to sooth him. As he approached18 months - before his diagnosis - he still was not sleeping. Instead of sleeping he would crawl out of his crib in the middle of the night, locate video's and play them. And it's been the same ever since. Nick is medicated every night so he can sleep. Despite medication, that should help him sleep for at least 8 hours - Nick is always one tiny sound or thought away from being wide awake. Nick goes to sleep thinking about video's and how he can get to them. I go to sleep making sure I've shut everything down, disconnected, and put everything away, including computers, TV's, tablets, Alexa, CD Players, Games that make noises and all things that can be used to play video's or repeat noises. When this began I never imaged it would continue for a lifetime, but it has. One more reason why it is so important for us to gain more understanding.

Special Needs & Legal Issues...Get Answers

October is National Special Needs Law Month. 

As a single mom and sole support for Nick I am always  concerned about protecting him while I am alive, and my concerns go even deeper when I think about what will happen to him when I am no longer here to protect him and be his advocate. Clearly I can't stay here forever, but I've learned that does not make me helpless when it comes to protecting him after I die. I hate thinking about his life when I'm not here, but I know ignoring the reality could have devastating consequences for him. So I think of it, knowing the legal planning I do now will protect him, and it's the biggest gift I can pass on. 

That is why I want to raise awareness about legal planning and resources for individuals with special needs. No matter how much I learn I always have questions, and I know all families are concerned and want to understand about legal planning for individuals with disabilities to protect their civil and personal rights, dignity, and quality of life. 

Here is a great list of resources you may find useful:



• http://aheadofthecurvelaw.com/2018/10/19/october-national-special-needs-law-month/
• https://www.naela.org/Default.aspx
• https://www.bettzedek.org/
• https://www.bettzedek.org/types/self-help-conservatorship-clinic/
• https://www.disabilityrightsca.org/resources/conservatorship
• https://www.disabilityrightsca.org/what-we-do/programs/office-of-clients-rights-advocacy-ocra
• https://thedrlc.org/

SPECIAL EDUCATION IN THE TIME OF COVID-19

SPECIAL EDUCATION IN THE TIME OF COVID-19

Status of Federal Waivers Due, in large part, to the grass roots efforts and letter writing campaigns from parents, the Department of Education (DOE) will not recommend waivers of the essential parts of IDEA, the federal law creating what we know as special education. Thank you for your efforts! Although in California certain State timelines may be waived per S.B. 117, no such waivers will be recommended under the federal law. The waivers that were recommended included timelines for assessing toddlers for special education as they transition from Part C to Part B services at the age of three. The DOE recognized that while some flexibility needs to take place during this crisis, such flexibility is already written into the law. At least for now, the DOE has refrained from any action that would harm the basic rights of students with disabilities and upheld their rights to a free appropriate public education under the IDEA and the Rehabilitation Act, We are hopeful that schools and districts will exhibit the ingenuity, innovation and grit of which the Secretary spoke and work with families to meet the challenges facing their most needy population of students.

The Rights of Students with Exceptional Needs The current crisis has changed the landscape of life dramatically. From simple chores to how we work to how we educate our children; nothing is the same. The same applies to special education. However, even in these dire times, schools and districts are still responsible for the education of the children they serve, including, or especially, students with disabilities.  This is why the dedicated team of lawyers, advocates and other professionals at Newman Aaronson Vanaman LLP continue to work to advocate for the needs of their clients, even more aggressively during the crisis. While there is no expectation that IEPs “as-usual” will take place, this newsletter lets you know that IEP meetings are still taking place, either virtually or telephonically. The same is true of IEP services, mediations and due process hearings. Conservatorship and Estate Planning also continue. School physical plants will be closed for the rest of this school year. Because Districts are providing educational services to general education students, services and supports must also be provided for students with disabilities. Unfortunately, this does not mean, and often cannot mean, the same level of support, especially for face-to-face services as in existing IEPs. The needs of children must be determined on a case by case basis. In some cases equal access to education for students with disabilities through online or telephone support may be possible, in others it may not.  Current directives from the Federal Government provide that the provision of compensatory services will be determined on a case by case basis when school sites reopen. Keep track of the dates and times services should have been provided (per the existing IEP) so that when schools reopen you can protect your claims for compensatory services. Click here for a worksheet to record the services that are and are not being provided for your student.

Disputes during lockdown Families may need advocacy services now more than ever.  Although largely working remotely, we are providing representation for IEP meetings, and filing for due process. The Office of Administrative Hearings is still taking complaints, holding mediations and hearing cases. If you wish to access our services for any purpose, fill out an intake form, and one of our attorneys will be happy to work with you. Timeline Waivers In California, under SB117, certain timelines for providing an assessment plan, or reviewing an assessment, have been extended due to COVID-19 to include the days schools were closed.  However, SB117 specifically does not waive any of the timelines under the IDEA, so all federal timelines remain in effect, including the necessity of reviewing an IEP annually, and conducting assessments every three years. The CA Department of Education provides updates with regard to COVID-19 weekly.

Resources Counsel of Parents Attorneys and Advocates COVID-19 page. A wealth of information for parents on how to handle special education during the Coronavirus. To review previous guidance related to COVID-19 and services to students with disabilities, issued by the CDE on March 13, 2020, visit the CDE website. Updated information and resources from the CDE related to the COVID-19 response. Federal guidance from the USDOE titled “Questions and Answers on Providing Services to Children with Disabilities During the Coronavirus Disease 2019 Outbreak.” To review federal guidance from the USDOE Office of Civil Rights on how to protect students’ civil rights. Guidance issued by the CDE on distance learning, including considerations for students with disabilities. For research on how online learning can be made more accessible, engaging, and effective for K-12 learners with disabilities, visit the Center on Online Learning and Students with Disabilities. Common Sense Media has curated a list of the Best Special Education Applications and Websites based on recommendations by educators who work with students with disabilities. The Council for Exceptional Children (CEC) has developed COVID-19 Information for Special Educators, including a forum for members on how to adapt IEP services during school closures. The State Educational Technology Directors Association (SETDA) offers strategies and resources for ensuring that online learning supports students with disabilities.

Reduce the Travel Hassle - 10 Websites Help You Build an Effective Autism & Airports Strategy

For me AAA means, Autism, Airport and Angst! The number one reason to not go on vacation if  you have a child with autism - is a tie- airport and airplanes! 

But it seems that things have gotten better over the years, and people are working to help make travel with our families a reality.  Check out this list and start taking the headache out of your families travel plans.

1. 7 Travel Agencies for special needs travel

2. A Special Needs Pre-Flight checklist

3. 32 Vacation Destinations for Individuals with Special Needs

4. Packing For The Plane

5. A Special Needs Guide To Airports

6. Do You Have Your Access Pass Yet?

7. 70+ Tips and Tricks for Special Needs Road Trips

8. Your Rights as an Air Travelers with a Disability

9. Airplane Travel: 5 Books to help prepare your special needs child

10.  15 Airports-that-offer-rehearsal-programs-for-individuals-with-autism/#.V7yZHp

9 Reasons Autism and Basketball are Sweeter than Christmas Morning! And worth the wait!

9 is the number of years I have been exposing Nick to basketball and now in year 10 he's nailing it! Gooooooooooo Nick!!!

I watched Nick go from uninterested, to being afraid of the ball to now dribbling the ball up court and making the shot! 

So worth the wait. Never give up :) 

Judge States "Boys will be Boys" As Justification for Rape & Assault of Special Needs Student

Not 1, or 10 but 30 Witnesses confirmed this special needs teen was assaulted. 

If you read this and you're as upset as I am, not just as a mom of a person with special needs, but as a person who believes in justice and human rights, then, please....

Sign the petition

On October 22, 2015 a mentally disabled, African American high school student was sexually assaulted by his classmates in a nearly all white Dietrich High School in Idaho. John Howard, 18, Tanner Ward, 17, and one other unidentified member of the football team lured the victim into a school locker room, promising him hugs, stripped him, forcefully inserted a clothes hanger into his rectum, then kicked it deeper into his rectum — causing internal injuries.

When this case was initially reported, and it was announced that John Howard was being charged with felony rape, the possible penalties were as severe as life in prison. It seemed like some semblance of justice was imminent. The school superintendent interviewed 30 witnesses and confirmed that the teen was sexually assaulted. Prosecutors agreed with their investigation — which also determined that the victim was also called “Kool-Aid,” “chicken eater,” “watermelon,” and even “n----r” by students at the school.

In spite of all of this evidence, this week John Howard was given the break of his life. Instead of getting life in prison for what he did, he won’t be going to jail for 10 years or five years or a year or six months or even a day. Instead, he’s getting two years of probation and 300 hours of community service. With good behavior, the judge said his record could be expunged. He’ll also be allowed to do his community service in his new home in Texas where his family peacefully relocated.

Judges in Idaho can reject plea deals if the proposed reduced charges and sentencing does not match the crime. It is disturbing that these criminals are walking our streets. Mental health services were not addressed as they should have been mandated. It is not normal to shove a hanger up another person's rectum. This isn't a case of "boys will be boys" yet the sentence depicts that cultural attitude. Please assist us in removing Judge Randy Stoker today by signing our petition. 

Do Alternative High School Curriculum's Improve Outcomes?

Watch Nick sing with the general education choir, and you tell me?

Everytime I push the envelope working to get more for Nick, I pray for more than a paper cut! Recently it's been all about not letting him graduate a social functional illiterate; which meant getting the district to work with me to build an alternative curriculum. They agreed and we built a schedule which got him out of the classroom and in settings where he could work on generalizing and using the skills he has already learned. 

One of his classes on our alternative curriculum is Choir, this year was his second year. Year one, he became aware of more songs and now listens to a greater body of music. When it came to the school performance last year, he was happy to go and get on stage, but he didn't sing he just swayed happily!. Which I was thrilled about. 

This year he got up on stage, still swayed and sang every word. He worked hard, and he delivered with all typical peers! So proud. 

Autism Mom FURIOUS over Steve Harvey Comments about Special Needs Kids

This mom is very passionate about special needs kids being joke material for commedians.  Some people are saying "Parents of children with autism too sensitive" What do you think?

2.5 Million Readers Pick Top Posts for 2014

Autism Day By Day - 2.5 Million Readers Pick Top Posts for 2014

What a year! Autism Day by Day became an official National Institute of health resource and more than 2.5 million of you logged onto Autism Day by Day. When the year was over you had unanimously picked the following posts to make up the top 20 reads! Your favorites covered every topic from Bullies to Puberty, Police to Cover Up's at the CDC, Joy of Surfing to Statistics, Employment and what makes us really mad, these are the posts that got your attention.  

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​MIT Reports 1/2 of all US Children will have autism by ..​

http://autismdaybyday.blogspot.com/2014/12/half-of-all-us-children-will-be.html

​A Candid Conversation with A Cop - Be afraid!​

http://autismdaybyday.blogspot.com/2014/12/operation-introduction-conversation.html

​​National PSA address's Autism Related Wandering; Spread the Word!

http://autismdaybyday.blogspot.com/2014/09/help-get-word-out-share-this-psa.html

​Bullies without Boundaries!​

http://autismdaybyday.blogspot.com/2014/09/bullies-without-boundaries-ice-bucket.html

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​Puberty, Part II Managing Masturbation! ​A must read for Moms

http://autismdaybyday.blogspot.com/2014/02/puberty-part-iii-managing-masturbation.html​

11 Ted Talks to a Happier Life! 

http://autismdaybyday.blogspot.com/2014/09/11-talks-to-happier-lifewhy-not.html

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​CDC Vaccine Cover Up Reported

http://autismdaybyday.blogspot.com/2014/09/whistleblower-cdc-covered-up-vaccines.html

​Disney Faces More Heat in Autism Lawsuits ​

http://autismdaybyday.blogspot.com/2014/09/disney-faces-more-heat-as-autistic-kids.html

​A Must See Video!  Autism + Surfing = Pure Joy!​

http://autismdaybyday.blogspot.com/2014/08/autism-and-surfing-must-see-video-of.html

​Police and Autism a Dangerous Mix​

http://autismdaybyday.blogspot.com/2014/08/police-and-autism-dangerous-mix-police.html

​​​Autism Online Job Board​

http://autismdaybyday.blogspot.com/2014/06/online-job-board-for-applicants-with.html

Disney Law Suit​

http://autismdaybyday.blogspot.com/2014/04/disney-parks-refutes-lawsuit-claiming.html

There may soon be a way to genetically test children for ASD

http://autismdaybyday.blogspot.com/2014/04/news-alert-there-may-soon-be-way-to.html

​Why "Retarded Needs to Be Retired"​

http://autismdaybyday.blogspot.com/2014/03/why-retarded-deserves-to-be-retired.html

​Employment Improves Autism Symptoms​

http://autismdaybyday.blogspot.com/2014/03/employment-may-lead-to-improvement-in.html

​Autism and Meditation - A good mix! ​

http://autismdaybyday.blogspot.com/2014/03/highlights-from-autism-meditation.html