There was a time when I couldn’t even say the word out loud. It was too painful, too devastating to utter. I wanted to believe that if I didn’t say the word, it didn’t exist. But it does exist; it’s real, and it’s beautiful, and it’s challenging all at the same time. And whether I say the word or not, my son Chris has autism.
I’ve been on this autism journey for 30 years now, more than half my life. Back in 1990, when Chris was first diagnosed, there was no autism awareness month, because there wasn’t autism awareness. Family, friends, and neighbors looked at me quizzically when I shared his diagnosis. What does that mean? How did he get it? How do you cure it? But I did not have the answers. Even the multitude of doctors we saw could not provide the answers. Since that time, there has been an exponential increase in the number of children diagnosed, and almost everyone has been touched by autism in some way. So today, when a family shares the diagnosis, others are usually aware of what it means.
As I reflect on the past 30 years I recall so many memories. I remember, as if it was yesterday, sitting in the doctor’s office; the diagnosis confirmed my fears following months of research into what might be causing the unusual behaviors of our little boy.
I remember…calling anyone and everyone I thought might help my family; the feelings of isolation at the playground, Sunday school, birthday parties, and all the other places where we just never seemed to fit in; the stress before every outing, wondering if there would be a meltdown or some other embarrassing event; wondering if my marriage would survive the stress; and the feelings of inadequacy for not parenting my children the way I thought I should have.
I remember the fear, guilt, and sheer terror of not knowing where my child was that day when he wandered off. But I also remember the intense relief and gratitude I felt when he was found.
I remember the vast uncertainty I felt when Chris was diagnosed, wondering what his life would be like as he grew to adulthood. And now that we have reached that point, I want to share some of the bright lights we encountered along the way, especially for those of you who may be new to the journey.
When he was four, I remember watching Chris climb aboard the school bus to begin the 45-minute ride to his “special” school. My gut told me that he needed to be with his community friends, and I spent years trying to persuade my school district to serve him in our local school. I learned about Chris’ right to be included with his neighborhood peers when I attended a workshop hosted by the New Jersey Statewide Parent Advocacy Network (SPAN), our state’s federally funded Parent Training and Information Center. SPAN became one of the bright lights on our path. The information our family received from SPAN allowed us to develop an IEP (individualized education program) that brought Chris back to our home district for high school. I remember watching anxiously as he disappeared into the building on his first day of high school, also his first day of school in a general education setting. Despite my concerns, I remember how kind and supportive Chris’ peers were to him; serving as beacons lighting our journey. I remember Chris learning math, reading, and how to play an instrument—things I was told he wouldn’t be able to do—and working with teachers who never gave up on him. And I will never forget, four years later, watching him climb into a limo with friends to attend the senior prom. My heart was so full of happiness and pride I thought it would burst.
This journey has taught me a great deal; autism has been my teacher for some of life’s most important lessons:
Gratitude
Autism helps you to be grateful for the small things, the things you might have overlooked had they not been such a struggle to achieve: hugs, first words, friends, independence, general happiness and physical health. I’ve learned to take nothing for granted.
Community
I continue to be in awe of, and inspired by, all the people we’ve met on this journey, most of whom have gone out of their way to help us any way they could: doctors, teachers, therapists, neighbors, friends, strangers, other families on the same path, and my colleagues at SPAN. Today, Chris has a circle of support that makes it possible for him to live a full, rich life. My husband and I appreciate the love and support of family; siblings have been caretakers and cheerleaders, and extended family members step up and help, no questions asked. Autism has taught me that I can’t do it all alone, no matter how hard I try. We need the support of others and must learn to accept it graciously.
Courage
Fear is an everyday struggle on this journey. I fear what will happen today and in the near future, and dread what might happen to my child when I’m not able to care for him. I feel trepidation in trying something new, and doubt with every life decision. But sometimes I must take a leap of faith. In this, I have always been rewarded, either with success or increased knowledge, both very valuable. I have learned to trust in myself and follow my gut.
Forgiveness
Of yourself and others. Don’t hold onto past mistakes and don’t carry the burden of anger and resentment toward others. Learn to let go, learn from your experiences, and move on.
Humor
Laugh at yourself and your circumstances. Laughing releases endorphins and helps you feel good. We can learn a lot by seeing the world through a different lens and by not taking things—or ourselves—too seriously.
In closing, what I want to share with you more than anything is how immensely proud I am of Chris and all he has accomplished. He is a 30-year-old man living with autism, working and volunteering in the community, and often struggling to find his voice and get by in a world that can be overwhelming for him. Yet he manages to do it with dignity and grace, with unwavering support from the circle of love and light that surrounds him—his parents, siblings, and extended family; his peers, support staff, and therapists; our neighbors and friends. I shall always be thankful for Chris and the guiding lights that autism brought into our lives.
Carolyn Hayer is the Director of Parent and Professional Development at the Statewide Parent Advocacy Network (SPAN) in New Jersey, an OSERS-funded Parent Training and Information Center.
The U.S. Department of Education has started informing a small group of states that they will have to make changes to the way they test students with severe cognitive disabilities, because of accountability changes brought about by the Every Student Succeeds Act.
Federal law permits students with the most severe cognitive disabilities to take an alternate assessment aligned to alternate achievement standards. Under the No Child Left Behind Act, the predecessor to the Every Student Succeeds Act, that assessment could be in the form of a portfolio, or collection of student work. But ESSA states that student assessments for accountability can only “be partially delivered in the form of portfolios, projects, or extended performance tasks,” meaning that states relying solely on portfolios have to make a change.
Officials at the U.S. Department of Education said that only a few state education agencies are expected to be affected by the requirement, and that so far, Georgia and Puerto Rico have been notified that they will have to change their testing procedures.
Allison Timberlake, Georgia’s deputy superintendent for assessment and accountability, said the state is reviewing the law and regulations but doesn’t anticipate a problem. The state is developing a new alternate assessment that will require students to perform standardized tasks, rather than relying solely on teachers collecting evidence of student performance.
“As we develop the new alternate assessment, we will review it to ensure it meets all federal requirements,” Timberlake said…
Read the full article here: May require an Education Week Subscription.
The selection of Johnny Collett, confirmed in December to oversee special education for the U.S. Department of Education, was a rare point of agreement between the Trump administration and the disability-advocacy community.
U.S. Secretary of Education Betsy DeVos was tripped up on disability-policy questions during her confirmation hearing last year, and her staunch support of school choice options has left some advocates worried that parents may not understand that choosing private schools means losing the rights guaranteed under the Individuals with Disabilities Education Act.
But Collett’s special education bona fides were not in question: A former special education teacher, he has served as a special education director for Kentucky and was the director of special education outcomes for the Council of Chief State School Officers.
Four months into his tenure, Collett, the assistant secretary for the office of special education and rehabilitative sevices, is trying to position the department as a supportive partner to states.
In an interview with Education Week, Collett discussed a wide range of issues involving special education responsibilities, including the Education Department’s oversight of the Every Student Succeeds Act; discipline and discrimination; school choice and students with disabilities; and the department’s leadership role.
He talked about the complex interplay special educators face between complying with federal law, supporting high expectations for all children, and recognizing each student’s individual educational needs.
Collett’s comments have been edited for space and clarity…
Read the full article here: May require an Education Week subscription.
U.S. Secretary of Education Betsy DeVos hasn’t testified before the House or Senate education committees since becoming secretary more than a year ago—and Democrats aren’t happy about that.
For one thing, it’s a departure from the record of her recent predecessors, each of whom had appeared before the two education committees at least once—and in many cases, more often—by this point in their tenures. And even when you widen the lens to look at other committees on Capitol Hill, DeVos is still behind the pace of her predecessors.
All in all, DeVos has testified before Congress just four times so far, including her confirmation hearing in January of last year, and three education spending committee appearances.
That’s not to say DeVos is dodging lawmakers. The party in control of Congress—in this case, the GOP—gets to decide when a cabinet secretary appears before Congress. “Every time the Secretary has been called up to testify she has made herself available to do so,” said Elizabeth Hill, a spokeswoman for the department.
Still, top Democrats on the House and Senate education committees—Rep. Bobby Scott of Virginia and Sen. Patty Murray of Washington—are not happy that they haven’t gotten a chance to hear from DeVos directly. They have big concerns about the way DeVos is implementing the Every Student Succeeds Act, her school choice agenda, and what they see as her rollback of Obama-era civil rights protections. They want to question her about those issues in person.
House Republicans say they fully intend to have DeVos speak to the committee, they’ve just run into scheduling conflicts.
Read the full article here: May require an Education Week subscription.
U.S. Secretary of Education Betsy DeVos is approving plans that fly in the face of the Every Student Succeeds Act’s protections for vulnerable children, according to more than a dozen civil rights groups, including the Leadership Conference on Civil and Human Rights.
The groups sent a letter Tuesday to Democratic and Republican leaders on the House and Senate education committees asking them to tell DeVos to stop approving “unlawful” plans.
“We call on you to fulfill your role in ESSA’s implementation and to correct the Department of Education’s flawed approval of state plans that do not comply core equity provisions of the law,” the groups wrote to Sens. Lamar Alexander, R-Tenn., and Patty Murray, D-Wash., as well as Reps. Virginia Foxx, R-N.C., and Bobby Scott, D-Va.
This is far from the first time that the civil rights community—and Democratic lawmakers—have questioned DeVos’ approach to plan approval. The Alliance for Excellent Education, one of the 17 groups that signed off on the letter, put together a legal brief questioning whether some of the plans that DeVos has approved meet ESSA’s requirements. And both Murray and Scott have written letters to DeVos saying she is flouting the law.
President Donald Trump has pledged in the past to either eliminate or dramatically scale back the U.S. Department of Education—but he’s ended up signing a spending bill that increases the department’s budget to the largest number in its history.
The new spending level approved by Congress, after months of delay, amounts to a broad rejection of the more-austere budget proposal released last year by Trump and Secretary of Education Betsy DeVos. The president and the secretary sought to eliminate some department programs and cut back others, and create two new major school choice initiatives.
The fiscal 2018 spending bill Trump signed into law last month includes a $2.6 billion increase for the Education Department over fiscal 2017 levels. Included in the new budget for the department is a $300 million increase for Title I, the federal program earmarked for students from low-income backgrounds, up to $15.8 billion, as well as increases for programs dealing with students with disabilities and for career and technical education.
In addition, the budget preserves a $2.1 billion program for educator development, which the Trump administration’s fiscal 2018 budget request had proposed eliminating. Funding for after-school and a Title IV block grant that the Trump budget also sought to eliminate was increased as well…
Read the full article here: May require an Education Week subscription.
Working as a Financial Aid Counselor, families often ask me how they can pay for college. More often than not this conversation takes place during the student’s senior year in high school. As a first-generation college student, there are things I wish my family and I had known to help us save on our college bill. These are a few things that families can do to help cut the cost of college:
1. Community colleges can be great options
Community college offers the most affordable education out there. At community college you can complete the general education classes that every school requires, and then transfer to a 4-year school where you can take classes specific to your major. Also, community college is a great place to gain technical skills and earn a short-term certificate to get you started in the workforce.
2. Buy used textbooks or rent them
Buy used books or check to see if you can rent textbooks at your school or online. After the class is over, sell your books back online, to the bookstore, or to someone else.
If you do an internet search for textbooks you may find a better deal from an online retailer than from the school bookstore, or you may be able to download a less expensive electronic version.
3. Explore all of your aid options
Apply for financial aid using the Free Application for Federal Student Aid (FAFSA). There are several types of aid such as grants, scholarships, work-study and loans. Apply for financial aid every year you are in school and start looking for scholarships early.
Also check with your school’s Financial Aid Office to see if merit-based aid is available. To qualify for merit-based aid, you may need to meet certain criteria, such as specific academic areas or certain sports.
4. Borrow responsibly
Student loans are not free. You must pay back your student loans with interest.
If you have student loan money left over after you pay your school expenses, you do not have to accept that money. It is not free! The less money you borrow now, the less money you will have to repay after graduation.
If you pay the interest while you are in school, you will pay less money in the long run.
5. Avoid dropping classes and focus on graduating on time
Decide what you want to major in early in your college career and decide which career path is right for you. By thinking about this ahead of time, you will avoid paying for classes that don’t end up contributing toward your degree.
Dropping classes will extend your time to completion. The longer you are in school the more you will pay for college. Postponing joining the workforce also means you will be losing out on potential earnings.
These are only some of the things I wish I had known when preparing to pay for my college education. All of the tips mentioned involve planning ahead.
A great way to handle your finances and practice planning is to develop a spending plan. A spending plan can help you manage your financial aid and finances, while helping you figure out your expenses over the number of years that it will take you complete your degree, but that’s a topic for another blog.
Robert Weinert Jr. is a Financial Aid Adviser and is pursuing his Masters in Higher Education Administration Enrollment Management at Bay Path University. He is a 2017-18 virtual intern with the Office of Federal Student Aid, U.S. Department of Education.
Following the Marjory Stoneman Douglas High School mass shooting, courageous and inspiring students around the country are demanding action, refusing to believe that we can do nothing to stem America’s gun violence epidemic. In stark contrast, U.S. Secretary of Education Betsy DeVos has responded with plans to chair a new task force on school safety that will, among other things, consider the wholly nonresponsive goal of repealing Obama-era discipline guidance.
The departments of Justice and Education, whose civil rights units we had the privilege to lead during the Obama administration, crafted the 2014 guidance documents that are now under attack. Intended to help schools serve students more effectively, the guidance explains long-standing federal law prohibiting racial discrimination in school discipline and concretely outlines how schools can satisfy this law while maintaining classroom peace. The guidance makes clear to school administrators and communities what the law is and how to apply it to treat all students fairly. In addition, the guidance provides practical resources to reduce disparities in exclusionary discipline and improve school climate, including a 50-state compendium of laws related to school discipline. A best practices document highlights alternatives to out-of-school disciplinary techniques that work to maintain classroom peace. The goal was simply to ensure that all children have a chance to learn and thrive.
The reality is, many American schools have a problem: separate and unequal discipline practices that discriminate on the basis of race. We know from careful investigations we oversaw at the departments of Justice and Education that children of color and those with disabilities often receive harsher disciplinary interventions than their white and nondisabled counterparts—for the same offenses. In one investigation, school staff could not identify nondiscriminatory reasons for racially different disciplinary treatment of students in more than a quarter of the files investigated…
Read the full article here: May require an Education Week subscription.
U.S. Secretary of Education Betsy DeVos made some surprising remarks to state education officials about the plans they are developing under the Every Student Succeeds Act (ESSA). What did she say and what was the reaction from Capitol Hill?
The U.S. Department of Education’s office for civil rights has started dismissing hundreds of disability-related complaints, following new guidelines that say such cases will be dismissed when they represent a pattern of complaints against multiple recipients.
The office enforces laws such the Americans with Disabilities Act and Section 504 of the Rehabilitation Act of 1973, both of which prohibit public entities from discriminating against individuals based on disability. It also enforces Title IX, which prohibits discrimination based on sex, and other laws that prohibit discrimination based on age, race, color, or national origin.
Marcie Lipsitt, a special education advocate in Franklin, Mich., estimates that over the past two years, she has filed more than 2,400 complaints to the Education Department over educational entities that have websites that are inaccessible to those who are blind or visually impaired, or who cannot use a mouse to navigate a website. Lipsitt’s targets have included school systems, universities, library systems, and state departments of education.
Read full article here. May require subscription to Education Week.
Autism.
The U.S. Department of Education has started informing a small group of states that they will have to make changes to the way they test students with severe cognitive disabilities, because of accountability changes brought about by the 
Working as a Financial Aid Counselor, families often ask me how they can pay for college. More often than not this conversation takes place during the student’s senior year in high school. As a first-generation college student, there are things I wish my family and I had known to help us save on our college bill. These are a few things that families can do to help cut the cost of college:
