A Hopeful Message for Parents and Students

Here is a first-hand experience from a teacher, Lynn, who works in a west coast state.

While reflecting on March 13th, the anniversary of the COVID 19 Educational D-Day in my state, I realized the many stages of grief I have experienced as a special education teacher and wondered if my students and parents had similar experiences such as the following: 

Cycle 1 – Denial:  For the first time in my career, my parents truly understood the magnitude of my responsibilities as a teacher. I have never experienced so much gratitude from parents and the public as an educator. Parents understood that education was not just teaching literacy and math skills but also taking care of my students’ social emotional/behavioral and adaptive living skills. They understood my job included teaching students to be intrinsically motivated to learn, work, and be advocates for themselves. It was excruciating to lose my ability to perform the very essence of my job and watch my parents and students struggle as education became a battle of wills between parent and child. I was arrogantly bathing in the praise.  

Cycle 2 - Anger: As remote learning progressed, I was beyond frustrated with not being able to hold my parents accountable for making sure their child was completing all of their work. I had to search for parents that “went dark” and refused to work with me. In most cases, these parents did not have the resources to work and educate their children. I spent many late nights and early mornings bridging the gap and teaching these parents how to differentiate instruction and streamline a teaching objective so their child would have equitable access to their education during a pandemic. I was facing and overcoming my personal prejudices as an educator. 

Cycle 3 – Bargaining: When the Fall of 2020 arrived, I was so thrilled to be able to synchronously and/or asynchronously teach my students. Finally, I would be able to forge relationships and hopefully regain the essence of my job. I could bridge the learning gap remote learning created for some families. I found myself having to slow down the progression of curriculum in order to help balance mastery of Common Core Standards along with addressing the mental health needs of my students. Students bonded with one another while adjusting to juggling the new normal of learning from both a teacher and a parent teacher. I was happy to be partially functioning in a classroom again.  

Cycle 4 – Depression, Reflection, and Loneliness: As asynchronous instruction continued and evolved, the realization that my students were progressing and learning, but not at the pre-pandemic pace depressed me. Despite the slower pace, my students were experiencing many breakthrough learning moments. As an educator, I was so excited to see my students being so insightful and wordily compared to the students I taught in the Fall of 2019. My students were not missing out on an education as much as they were receiving a very different education, which fully embraced mental health instruction balanced with Common Core instruction. Unfortunately, state tests will not measure these benefits from adjustments made to curriculums and approaches to educating our students during the COVID-19 pandemic. I was reflecting on how my students were teaching me as much as I was teaching them.  

Cycle 5 – Upturn: I have adjusted to the twelve-to-fourteen-hour work days and the challenge of not having enough time to complete my work as I did in the pre-pandemic days. Students are back in school with PPE and plexiglass boxed desks. Classroom doors are prop open and students' voices fill the hallways again. Students are thrilled to get a piece of their life back even if it looks different. They are resilient and so are educators. Students will not remain academically behind – there will be summer school and extended learning days in order to bridge the learning gap caused by the pandemic. Because my students are so focused on their academics in a way I have never witnessed before, I think the gap will repair itself. Now, parents truly understand how important a partnership with their child’s teacher directly benefits their child’s academic success.

I have hope.

Trauma, Triggers and Triumphs

By Carol K. Kennedy, Ph.D.

How can I help my child identify their triggers that help them cope better with everyday life?

In the past year we and our children have experienced so much trauma from Covid-19, whether in our own families or in society at large. Young people with disabilities, including those with Autism Spectrum Disorders are especially sensitive to these feelings of despair, depression and anxiety. Things that bothered them in general before Covid now can be exacerbated by exposure to the media, and ineractions with family, peers and the outside world. Helping them to identify their own triggers - or what makes them feel overly anxious, afraid, overwhelmed or panicked, can help them anticipate their reactions and learn to tolerate such behaviors or situations. These sensory triggers can include, but are not limited to, loud or certain kinds of noises, people arguing, large groups, certain smells, bright lights, media overload, proximity to people as well as other environmental occurrences they feel are beyond their control. Even going back  to in-person classes can trigger some new responses reflecting the trauma of being in lock-down and having to re-enter public spaces.

So, how can we help them deal with these situations and learn to tolerate them before they go into a crisis state? First, think of yourself and what really bothers you? What makes you, as an adult, feel this way? Is it the sound of sirens? I know that living near a New York City hospital in the Covid-19 hot spot and hearing ambulance sirens every 15 minutes, 24 hours a day for months, make me cringe every time I hear any kind of siren. I felt my heart rate increase and my anxiety kick in. Even now that the worst of the crisis in NYC appears to be over.

First Step to a Solution: Start by helping your child identify several things that really freak them out - it may be things you never thought of - even encountering a person not wearing a mask or walking too close.  Have them talk about why this triggers them and describe how it makes them feel. This is the first step toward having your child be able to tolerate whatever that disturbance is. Even taking a picture, a recording  or video with their phone while talking about it can help.

Self-awareness is the first step toward understanding and self-regulating our reaction to bad situations. Then we can move on toward learning some new coping strategies and greater success. 

Lead your child to a feeling of triumph rather than trauma.

Bridging the Covid Learning Gap

By Carol K. Kennedy, Ph. D

Now that schools are reopening and students are transitioning to in-person and remote learning, it is time to take stock of what your child lost during the past year. There is now Covid-19 relief funding that is part of the recovery package pending in Washington, DC. 

What can you do for your young person? It's time to step up and advocate on their behalf to get the resources they are entitled to receiving. As a parent, you can identify and focus on the loss of learning and skills your child has experienced. One way to begin is by trying to get an actual assessment from their school or institution. And here are a few other steps to take:

Compliance with IDEA: Make sure the school is in compliance with the Individuals with Disability Act (IDEA), and other federal, state and local requirements for a free and equitable education. This includes assistive and adaptive technology they may need. Also, make sure you have the connectivity needed to use this technology and the know-how to use it effectively. Be sure the teachers and administrators do as well.

Getting the right technology for your child's needs: Inquire directly about what your school/district/vocational program has purchased specifically to meet all of the technology requirements your child needs to bridge the gap. It is their right to have whatever they need. The good news is that it is going to be part of the Learning Recovery Act. In understandable terms, Don Johnston, a leader in disability education, has stated the following, which can be found on their website:

• Purchasing of educational technology

  • hardware, software, and connectivity

  • for students served, “that aids in regular and substantive educational interaction between students and their classroom instructors including low-income students and children with disabilities, which may include assistive technology or adaptive equipment.”

• Providing technology for online learning to all students

• Directly Addressing Learning Recovery

• Implementing evidence-based activities to meet the comprehensive needs of students

  Improving Access to the Curriculum: Technology can be used to access curriculum materials, bridge learning styles and abilities, and help aid in learning recovery for all students. Tools like read-aloud, translation, on-the-fly text leveling, voice typing, and organization support can improve:

• Access to the curriculum

• Independence

• Dyslexia / Dysgraphia support

• Comprehension of grade-level materials

• Testing outcomes (with accommodations)

• Organization / Executive Functioning

Visit Don Johnston online for more information.

As you’ll see, your young person can have their needs met so they can catch up to feel more empowered and successful in the near future. It is now up to you to be assertive and make sure the get support and know how to use it.

Go through the list and discuss it with your child to see what has helped and what they need going forward. The findings might surprise you!

Lastly, it is almost time for annual IEP meetings, so be present and hold your district accountable and know your rights. 

As always, we are our child's best advocate.

How Can I Get Help for My Child with Mental Illness?

Here’s a mental health check:

Many young people with disabilities also have mental health issues, such as anxiety, depressions, OCD and phobias. These issues may manifest themselves even stronger during the Covid-19 pandemic. Young people are feeling isolated and invisible. Many are hiding their problems, slipping into the shadows and becoming withdrawn, especially without any extra support.  They miss their school, teachers and friends, as well as the one-on-one support from clinicians and other support persons in their lives. 

Home life may be chaotic or more stressful. Online learning can be a complete challenge for them too. Mental health in our country and in many cultures has an additional stigma, so some families have a harder time admitting or coping when this happens. As a parent, you may need a temporary leave from your employer to care for a child in crisis. Take time to find out if an Employee Assistance Program is offered by your company and use it. Don't be afraid to ask for such services that are meant to be helfpul. Meanwhile, watch for signs that your child may be hiding from you to avoid embarrassment or calling attention to themselves. They may not want to interact with you at all or become more oppositional. All are warnings that an intervention may be necessary.   

But don’t despair. There is an organization called the National Alliance for Mental Health (NAMI) where you can find support groups in your area to help you and your child get through this difficult period.

Please don't feel that you are alone. There are so many people in the same situation during this challenging time.

—Carol K. Kennedy, Ph.D.

Getting the Covid-19 Vaccine: The Ins and Outs

Should you get your teenage child 16 and over vaccinated if they have disabilities and other health issues?

First, I would personally like to report that I have gotten my first vaccine shot here in New York City with very few side effects, except for a sore shoulder that lasted just a few days. Hopefully,  I will be able to get the second one in three weeks. It was no worse than getting a flu shot. Here are several tips to consider if you’re trying to get your child, family member or friend vaccinated:

1.) Don't be afraid - It is a daunting task.  Many parents and young people have reservations about getting the vaccine, whichever version, whenever it is available in your area. After speaking to several pediatricians, adolescent medicine specialists and internists, including a colleague, who is a pediatrician and professor at Columbia Presbyterian Hospital. She has been in practice at the hospital for decades, including working closely with children and adolescents on the Autism Spectrum and ones with other disorders. This highly respected doctor, along with others, concur that there should be no higher risk of side effects among adolescents 16 and over with disabilities than those in the general population of young people. Of course you have to always consult with your own doctor(s) and consider your child's medical conditions and history before getting them vaccinated.  

2.) Do the benefits outweigh the risks? - I believe so and here’s the reason. There has been a huge outbreak of Covid-19 among students in special education schools and facilities. Many young people in this group have difficulty with hygiene, maintaining social distance, wearing a mask and self-regulation.  Personally, I don't know how I would have gotten my own son to be compliant when he was a teenager. Think of how hard it has been for well-informed adults to follow all of the safety guidelines, even with the best of intentions. I certainly would have had him vaccinated if possible, just as I had him get the other childhood vaccinations.  

We want our young people to be able to go back to in-person learning, interact with others and not be afraid as soon as possible. While there is no guarantee that the vaccine is going to absolutely prevent us from getting Covid-19, it certainly will help, especially as more of the population is vaccinated. Many young people with disabilities have other conditions such as asthma, weakened immune systems and other health impairments that make them more vulnerable to contracting the virus, and suffering more serious symptoms and side effects. Some of our young adult children live in group homes where they are likely to come into contact with staff every day. In the special education schools that are open full-time, there is exposure to teachers, other staff, bus drivers and other students.  

3.) Please help me help my child overcome the fear of getting the vaccine - There is so much information, some of it very confusing and frightening, that adolescents and young adults get through social media, online newsfeeds and TV that they may be worried safety when getting the vaccine. They may misconstrue the information, even if it is correct. Others may be terrified of needles or vaccines in general. How do you deal with their anxiety and reassure them that it is OK and for their benefit? This may be a collaborative effort between you, your other family members, your health-care providers, support staff and your school or program. If you are able to get vaccinated, or another family member has, you can use this as an example to illustrate that it is low risk. Media figures who are promoting the vaccine, such as your child's heroes or role models, may show that it is great to protect themselves and others. Make sure your child fully understands the benefits of getting vaccinated for themselves, your family and the community.  

All of this will take time, as the vaccine is not easily accessible to everyone, but when and where it is available, please consider getting it for yourself and your child. Please take a look at the resources we have provided to help you make up your own mind and hope these tips have been useful.

—Carol K. Kennedy, Ph.D.

Health Precautions During Covid-19: Don't Scratch That Itch!

We had a 12 year-old boy in the residence where I worked who has terrible eczema, which was exacerbated when he was stressed. 

He tended to scratch his face, arms and hands until they bled. Yes, he had special prescription ointment he was supposed to apply in the morning, afternoon and before bedtime when he remembered and the staff was reminding him to be conscious of what he was doing, which was challenging. 

The other kids kept their distance because he was covered in scabs and bleeding, which isolated him even more and increased his stress level.  Doing some social role-playing, the clinicians and I worked to get him to regularly apply the ointment, keep his hands away from his face and wear long sleeved shirts to stop him from scratching.  And all helped him tremendously. 

But now, in this time of Covid-19, how do you stop a boy from touching his face, encourage him to wash his hands and not to be stressed even more than usual?

Just one of the issues when dealing with a health pandemic and children with disabilities. Hopefully, now that he’s older, he can remember to protect himself, be aware of his actions and remain calm.

—Carol K. Kennedy, Ph.D.

Coronavirus: Dealing with Major Anxiety

We as adults are in a state of great anxiety and stress. 

As my internist told me, "if you aren't stressed right now, you are either over-medicated/sedated or have a mental illness." Now imagine what our children are feeling during these times. This includes everyone from young adults to young children with disabilities who may not be able to really comprehend what is going on. But they can feel our moods, our stress and will react to it since the news is everywhere and people are acting strangely. 

So, how do we decrease the enhanced state of overwhelming anxiety and depression? We can start by being very factual about things we know and reveal that some things are uncertain, but that they will not last forever. Try to make them understand why they can't see their friends, hug their grandparents and the need to keep washing their hands and keeping clean. We also have to keep ourselves from overreacting, by staying calm and reassuring.  Their anxiety, like ours, will come in waves. 

Some children and young adults will think that we are all going to die, which is not true. They will worry about you dying and who will take care of them should it happen. Yes, life is different now, and it may be for some time, but some day it will return to normal. Suggest they make a list of their favorite activities or things they will do once we can resume our everyday lives. Talk about vacations you might take, family you will visit, even everyday events like going to the park or hanging out with friends. Use Facetime (if you have an iPhone) or even just a make calls to everyone they love. If you can, have a Zoom session with their friends and family.

Then make a list of fun things they are doing right now, such as playing video games online, doing some indoor exercises together, using the computer for online learning, baking together or even having everyone home at the same time. Staying positive will reduce their fears and make this crisis more palatable without long-term PTSD effects.  And limit the amount of news that they see on TV or from social media online. 

Of course, setting boundaries is very important for you as well. Especially if you are trying to work from home or complete tasks. We all need a time out no matter our circumstances, whether this is going in the bathroom and locking the door, taking a walk around the block alone or sitting alone when everyone else has gone to sleep. 

Remember, you have to keep your own sanity in order to preserve that of your family.  I keep reminding myself of this as well. 

—Carol K. Kennedy, Ph.D.

OCD Handwashing and Germaphobia During Covid-19

Aside from doctors, nurses and others in the healthcare field, there are no other people who wash their hands as much as persons with OCD handwashing. 

Now that we are told to wash our hands thoroughly for at least 20 seconds every time we may come into contact with another person, a contaminated surface, etc., all bets are off for such handwashers. How do we help people with this issue control their anxiety and not let it get out of control? 

Admittedly, even I am now washing my hands so often that they are raw. So let's think about a few steps that might help:

1.) Remind your child/young adult that handwashing is really necessary and appropriate when following the guidelines. 

2.) Instruct them to completely dry their hands and apply some kind of moisturizing cream. 

3.) Use a timer to reach the necessary 20 seconds and then end it when the buzzer go off. This way your loved-one can see and hear the set amount of time needed. 

4.) Post a visual reminder in the house of when to wash hands, and when it is not necessary. 

These are just a few suggestions as many OCD behaviors are going into overdrive right now. 

Hope it helps.

—Carol K. Kennedy, Ph.D.

Love and Stress In the Time of Covid-19

It’s been all around us for quite some time now, on the news, in the papers, notices of closed restaurants and businesses - the Coronavirus, which has hit New York big time and spread throughout our nation.

We as adults can do the best we can by washing hands, social distancing, not touching our faces, staying at home and so forth. But what happens to a young person with disabilities who cannot comprehend the severity and consequences of this pandemic? 

There is a young man who is developmentally disabled in my apartment building.  He lives part of the time with his widowed father and the rest of the time in a group home. I couldn’t help but overhear his father, who is in his late 60s, trying to explain to his son why he has to return to the facility for safety reasons. 

"I don't want to argue with you,” he said “You have to go back tonight in the car service. The group home feels it is much safer for you to remain there.” At this point I could only hear the father’s responses and stress level. He continued, “No, I don't know exactly when you can come back home here, we will just have to wait and see. No, you can't hang out and wait in the lobby like you always do. You will wait at the curb when the driver says he is here to pick you up.  It is not my choice. I know you are unhappy, but there is nothing I can do about it." 

That sums it up. 

This young man, in his late 20's, is used to roaming the neighborhood on his own as long as he does not go too far and comes home when expected. He is also unpredictable, sometimes resorts to temper tantrums when he does not get his own way, but is otherwise has a sweet disposition and is very friendly. 

His father is doing the best he can under the circumstances, but it is so hard for him and many others in similar situations. If there is someone you know facing such challenges, please offer to help out if you can.

—Carol K. Kennedy, Ph.D.

Finances and Banking for a Person with Disabilities

In this day and age of online banking, identity theft, hacking and vulnerability we are all at risk of something happening to our accounts and credit cards, all of which can have a negative impacg on our credit scores. 

Recently, I worked with a young man who had a terrible incident happen that sent him into a tailspin. He has a regular checking/debit account with one of the largest banks in the country. Unbeknownst to him, someone hacked into his account, deposited a forged paycheck for $18,000, rather than his usual check of $1,800. This person also tried to draw funds against this check and whatever was already in his account. They managed to steal about $2,700 and wreaked havoc in his life. He suddenly had no access to his money, no way to honor his automatic pay bills and had to launch an on-going investigation into what happened.  

This is a person who is already somewhat fragile, prone to stress-induced anxiety and depression and has some learning disabilities. You can only imagine what a disaster this was to his life. He thought he would be fired when he told his boss about the fraudulent check that included a bad forgery of his signature. Fortunately, this did not happen.  Instead, he had to set up a new bank account and everything that goes with that process, spending many hours on the phone to get it all done. His parents spent hours at the bank as well and were told the investigation could take up to 90 days to resolve. He could not deposit his current paycheck since he could not use the cash machine because his new cards weren’t activated yet and he got home too late from his job to physically go to an actual bank.

Now imagine if this happened to you and how upset you would be. Then take a person with disabilities and magnify that distress many times over. The banks are not set up to really help a person with disabilities or address its own vulnerabilities to corruption of accounts. Who has to pay the price for this? What if there had not been an adult willing to advocate for him and guide him through this morass? 

In these days of technology, we really have to consider how to protect the most vulnerable among us, whether they are members of our family or communities.  We need to come up with solutions and protocols to help navigate through this stressful and impactful labyrinth. This applies to banking, credit cards, regular bills and accounts, everything we take for granted in our everyday lives. Our commercial institutions need to be more accountable and as well.

—Carol K. Kennedy, Ph.D.