Our Strange New Normal
Story by Kim Oren
Life feels strange right now, and I know you feel it, too. All the things we used to do for fun and comfort have been stripped down to the very thing we have been taught to limit - screen time. Paradoxically, the socially appropriate way to get anything done these days is to do it behind some kind of screen or mask. How quickly life as we know it can change!
Like me, I know you are no stranger to change. Having a child with special needs requires more flexibility and patience than the average person. You might surprise yourself by looking around at others who are not so adept at changing their entire lives on a whim. You, my friend, are already skilled at this!

One of the biggest challenges that parents are facing is - yes, you guessed it - online school. Almost all schools have closed for a few weeks, if not indefinitely, which has left the primary educational responsibilities on the shoulders of parents. You can see the reactions from thousands of homeschool inspired posts, memes, and articles on various social media sites. The consensus is clear - teaching is challenging, and teachers are underappreciated.

With 15 years of public school teaching and one year of homeschooling under my belt, I admit that seeing the appreciation and funny videos warmed my heart and made me shed tears of laughter. The spotlight is on the teaching profession, and people are realizing that teaching is not easy and that educators do more than simply teach academic content.
While I do have some tried and true teaching tips I could share to help you through this time, I'd rather be honest and express some of my recent realizations. I also want to remind you of a few things that you probably already know as a parent with a special needs child. My hope is to reassure you of your strengths and share some of my own thoughts as we lean on each other to survive one of the most challenging times of our generation.

1. Let’s get one thing straight : this is not normal homeschooling! I recently read an article that resonated strongly, and it reminded me that this time should really be called Crisis Schooling. Parents are being asked to carry out essential academic tasks for schools to document that educational opportunities were provided. If you are doing something, that is what matters most. If you can’t keep up with the pace, communicate with your teacher(s) on what you can do and stick with it. Schools simply need to document what is being provided so that the state can count it to meet the minimal requirements. This will hopefully prevent students from needing to work during the summer months.

2. Your child’s IEP is NOT going to be met as written, and there isn’t much that can be done about it . Again, communicate with your school on what you can realistically do with the constraints you have. In my house, I have two boys with IEPs. One has inclusion support in high school, and the other is in elementary with academic inclusion, speech, OT, and behavior supports. For things to be completed like other students, my husband or I must provide these supports. However, I am also teaching my own 132 students online, and my time is spread thin. I cannot allow myself to stress over the details of his IEP right now. We are teaching in a crisis, and I am doing the minimum that he needs for school. His work isn’t the best, and neither is his participation on Zoom calls, but we are doing the best we can with what we have on hand.

3. Make a daily schedule and try to stick with it but allow yourself plenty of grace . The best thing my son’s behavior teacher suggested during the first week was to create a new daily schedule. This not only helped my son but also helped the entire family. I know this isn’t a new concept for parents with special needs kids, but I’m here to remind you that you probably need a NEW schedule. The schedule you had before may not be appropriate for the current situation, and it’s important for your child to have some kind of structure throughout the day. In our house, we built the schedule around everyone’s school and work appointments and printed several copies for each day so we can cross off items when completed. A daily schedule has been extremely helpful to us because we do not have enough computers for everyone, and we have to schedule them according to my Google Hangout lessons, the kids’ school Zoom meetings, homework assignments, and my husband’s work needs. It hasn’t been easy, and we haven’t always been able to attend all of the meetings, complete all of the work, or finish everything on the daily schedule. This is where grace comes in. Do what you can and celebrate what you accomplish each day, but do not be so rigid in your expectations about everything needing to be completed exactly - or even in the same order. Don’t beat yourself up over things left undone or even on days when you need to completely abandon the schedule.

4. Make time to take care of yourself. While being quarantined, it can be difficult to separate school/work time from down-time. Heck, most of us are struggling to even know what day of the week it is! Yet, it is extremely important to take care of yourself during this time. For me, I need physical activity, so I put exercise time on our daily schedule. On rainy days, I have to get creative with my indoor exercises. I also have to schedule when to shower and change clothes because I've literally lost track of time because I'm not in my normal routine. Even though the days seem to be running together taking a shower at the same time each day helps me maintain some sense of normalcy in my house. And don’t be afraid to set up online social time. Think about what you miss the most and be creative about how to work it into your day.

5. Don’t stress about too much screen time. I know this sounds counterintuitive, but we are not the only ones feeling stressed these days. Now, it is still important to encourage a variety of activities, exercise, and healthy eating, but don’t forget that we are in the midst of a crisis, and it’s not the end of the world if your child ends up spending more time on a device than usual on some days. As parents, and particularly as parents of special needs kids, we strive to find the perfect, healthy balance for our kids because if we don’t, behaviors or seizures will surge. I’m not telling you to allow anything unhealthy for your child, but I am reminding you to be kind to yourself and be careful with your expectations. Do not expect perfectionism right now from your child or yourself. And if you need reassurance, then let me completely absolve you from guilty feelings on days when you never change out of your pajamas and realize it’s 9:00 at night and your child has been on a device all day. It’s okay. Set a new goal for the next day and move on.

6. Focus on the positive . There’s nothing we can do to change what’s outside of our control right now, but we are in control of our actions and what goes on inside our homes. Be careful with how much time you spend reading or watching the news. Too much of this can really pull you down emotionally. Try to incorporate something positive into each day, whether it’s cooking together, playing a game together, or simply having a conversation about things for which you are grateful. Laughter can be so healing and necessary for survival during these times of uncertainty. For me, quarantine life has been another lesson on letting go of my own sense of control in my life. It’s reorganizing my priorities and reminding me of what truly matters. Try hard to go through the motions of positive thinking, even if you have doubts. Our kids need to see how we handle adversity so that they learn healthy coping skills.

As I reflect on my old homeschooling days, I fondly remember the activities, field trips, and social outings that were built into each day. Please remember that this is not normal homeschooling right now nor is it true online school. These are unprecedented times, and we are all leaning on each other to get through. As I type, the rain is pouring down and the forecast calls for flash flooding and more rain over the next 10 days. It seems like there is no end in sight. Yet, I am clinging to hope, my amazing community, family, friends, faith, and an old proverb: April showers bring May flowers. I pray that the current pain and struggles we are experiencing now will produce beautiful flowers and new beginnings in the future for us all.

Statement on 2020
DCC Conference

The NODCC has continued to discuss the increased risks arising from the global coronavirus pandemic. This risk, together with the increased travel restrictions and financial uncertainties, will have an impact on our DCC Conference planned for this summer. We have made the difficult decision to postpone our conference until next year: June 25-27, 2021.

Although our conference was not scheduled until late June, our priority is to protect the safety and health of our community and those who support the organization including those with a DCC, their families and caregivers, research experts, volunteers, sponsors, vendors and other attendees. We did not want to act prematurely in postponing the event, and believe this decision is in the best interest of our community in order to minimize disruption and uncertainty in everyone’s lives.

The good news is that we were able to make these changes with the hotel and our vendors at no financial penalty to the organization. We will begin working with speakers and other guests on participation during the fourth weekend in June next year.

For hotel and conference registration cancellations:
• If you have already registered for conference, please contact Barb at info@nodcc.org to receive a refund or carry over your registration to the 2021 event. We will also begin following up with registrants later this month to determine how you would like to proceed.
• If you have reserved rooms at the hotel, please cancel those reservations. If you have any issues with free cancellation at the hotel, please contact Barb. We will share a new group hotel code for 2021 once we receive it from the Embassy Suites in the next few months.

While we are disappointed that we will not host our most important gathering for another year, please know that our hearts are with each of you during this time, and we will be exploring new ways to connect in the coming weeks.

P.S. Registration for the 2021 DCC Conference in Frisco, Texas, will open this summer!
Here are the latest opportunities to get involved with the NODCC community.
Olam’s Piggybank Grant Program Accepting New Submissions in May
By Megan Foster

As a one-year-old, Haley Jean was diagnosed with Aicardi’s Syndrome which is an ongoing seizure disorder due to partial or complete absence of the corpus callosum. Haley, who is now 27 years old, is not defined by her diagnosis.

According to Haley’s mother, “Haley is a happy girl” and “she works hard with her daily struggles and therapies.” Because Haley has seizures, her mother wanted to get Haley a weighted blanket to help comfort her after seizure activity and reduce stress. Haley’s mother applied for a grant from the NODCC to cover the cost of the blanket.

Twice a year, the NODCC offers grants through Olam’s Piggybank Grant Program to families and individuals that need assistive devices and technologies for their loved ones. This program was designed to enhance the life of individuals living with a disorder of the corpus callosum, and inspired by Olam, a boy with a DCC who has successfully used assistive devices and technologies for development.

Haley received the grant last fall and her mom reports the blanket has been very helpful. “Having the weighted blanket helps Haley relax and stop shaking after seizure activity...she benefits from the deep pressure it gives her.”

The next grant cycle for Olam’s Piggybank is May 1-31. Visit https://nodcc.org/resources/grants/ to learn more about the grant program and to apply.

Giving to the NODCC

This is a reminder that your regular Amazon purchases can help raise money for the NODCC thanks to a donation opportunity provided through AmazonSmile. Help the NODCC and encourage your friends and family to list the NODCC as the preferred charity on your Amazon accounts. Start contributing today and add the NODCC to your AmazonSmile. Click on the photo above to start shopping!

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