“Time?! What am I doing wrong?”
This thought, shared by a mom-friend during the early days of stay-at-home orders, resonated deeply. It highlighted a stark contrast in experiences, a feeling of being out of sync with the seemingly universal struggles of parents navigating lockdowns. For those of us parenting children with special needs, the pandemic didn’t just amplify existing challenges – it placed us in a different reality altogether. The concept of “free time,” the bandwidth for home improvement projects, the validation sought for skipping a school assignment – these were luxuries far removed from the daily intensity of managing complex needs. I Feel That I Learn With Others who understand this unique landscape, and it’s through shared experiences that we find strength and navigate the extraordinary demands of parenting children with mental health challenges, autism, and other special needs, especially in times of crisis.
Unlike the experiences of friends whose children might be bored or restless, my days, and those of many parents in similar situations, are structured around the fundamental needs of my child who struggles with mental illness. Pre-pandemic, the journey was already isolating and demanding, creating a sense of otherness. But the pandemic magnified this feeling, making us feel like we were operating on a different plane. While social media feeds filled with images of organized homes and new hobbies, our reality was one of constant management: navigating emotional breakfasts, enduring homeschooling sessions that felt unending, and consistently de-escalating meltdowns. Like parents of children with autism, our days are often consumed with helping our children manage basic daily tasks, leaving little room for anything else. My husband and I often feel like we are in a perpetual state of cleanup, addressing the spills and disruptions that are a constant part of our child’s day. It’s a relentless cycle with no breaks, certainly no time for leisurely home projects.
In these demanding times, my admiration for single parents has grown exponentially. My ability to maintain my professional life is solely due to the unwavering support of my husband. (To all single parents, especially those raising children with special needs during this pandemic, your strength is awe-inspiring. You deserve immense recognition and respite – perhaps a lifetime supply of tropical vacations.) Even with a partner, moments of solitude are fleeting and feel almost insignificant against the backdrop of my child’s continuous needs.
So, to those parents who are navigating similar paths, strewn with daily challenges and unique demands:
You Know Your Kid Best
The decisions surrounding our children’s care and services have become even more complex. Some families have opted to continue in-home services, weighing the risks and benefits. Others have transitioned to telehealth, often with reduced hours. Many have had to suspend services altogether. These choices carry significant weight, impacting our children’s present and future. We are constantly evaluating and re-evaluating, questioning our decisions about therapies, routines, and daily management. Even well-intentioned advice from friends and family can introduce doubt and uncertainty. In these moments, it’s crucial to remember this mantra: I know my kid better than anyone.
You possess the most profound understanding of your child’s needs and what is truly best for them. While it’s valuable to consider the insights of professionals who know your child, it’s equally important to disregard unsolicited opinions that are not helpful. You are the expert on your child, managing their daily life intimately. Whatever decisions you have made regarding their care, know that you are making them with your child’s best interest at heart. Your dedication and effort are commendable.
Alt: A parent gently embraces a child, illustrating the emotional support and care required in parenting, especially during challenging times.
You Are Doing Great, and There is No Judgment Here
Thou shalt not judge oneself by thy neighbor’s Instagram – a crucial commandment for pandemic parenting. Scrolling through social media and witnessing seemingly effortless achievements and picture-perfect moments from other families can be disheartening, even in normal times. This feeling is amplified during a pandemic. If you can genuinely celebrate others’ successes while maintaining your own sense of well-being, that’s remarkable. For many of us, however, it’s necessary to step away from social media and seek out communities that understand and validate our unique experiences. Sharing the specific challenges and small victories with those who truly understand is invaluable. For instance, typical-mom friends might not grasp the significance of a day without property damage in our homes, but within communities of parents facing similar circumstances, these milestones are celebrated and understood. This shared understanding reinforces the truth: You are doing your best, and your best is enough. Find those who appreciate your child, your situation, and your unwavering efforts. Remind yourself regularly: you are doing a great job. I feel that I learn with others in these communities, gaining perspective and encouragement that is vital for navigating this journey.
Ask for Help – You Are Not Alone
Seeking help can feel even more challenging now. Traditional support systems might be less accessible, and financial constraints may be tighter. Finding respite care or in-home therapists was difficult even before the pandemic. However, if you are feeling overwhelmed, here are some avenues to explore:
- Prioritize Individual Breaks: If you have a partner, taking turns to disconnect is essential. Even short periods of solitude can make a significant difference.
- Utilize Virtual Connections for Your Child: If your child can engage in video calls, schedule regular sessions with family and friends. This provides your child with social interaction and you with a brief respite.
- Maintain Communication with Therapists: If your child receives ABA therapy or other services, keep therapists informed about any changes or escalating challenges. They are there to support you. Don’t hesitate to request additional support or resources.
- Explore Telehealth Options: If you do not currently have ABA services, inquire about telehealth options, even if it’s for parent education and guidance.
- Utilize Crisis Hotlines: Save crisis intervention hotline numbers in your phone for immediate access if needed.
- Simplify Meal Preparation: Exhaustion makes cooking feel impossible. Utilize takeout options when possible or accept meal offers from friends. Cereal for dinner is perfectly acceptable.
- Connect with Online Parent Communities: Platforms like Reddit and Facebook groups offer communities of parents who understand your specific challenges. Sharing stories and experiences within these groups can be incredibly validating and supportive. I feel that I learn with others by reading and participating in these online forums, realizing I’m not alone in my struggles.
- Reach Out to Community Organizations: Churches, temples, and other community organizations may offer support services like meal delivery, support calls, or grocery assistance.
- Explore Resources like Aunt Bertha: Aunt Bertha (auntbertha.com) connects individuals with social programs and non-profits that offer assistance with groceries, healthcare, housing, utilities, job resources, and legal aid.
- Know Emergency Resources: The National Domestic Violence Hotline (1-800-799-SAFE) is available 24/7.
- Utilize Disaster Distress Helpline: The Disaster Distress helpline (1-800-985-5990 or text TalkWithUs to 66746) is available for those experiencing crisis related to events like the pandemic.
- Seek Professional Counseling: Consult your primary care physician for a referral to a counselor if you feel you need professional mental health support.
- Employee Assistance Programs: Check if your employer offers an Employee Assistance Program, which may provide free counseling, legal advice, or other services.
- In Case of Emergency: For immediate safety concerns for yourself or others, call 911.
Alt: A diverse group of parents gathered together, offering mutual support and understanding, representing the strength found in community and shared experiences in parenting.
Prioritize Self-Care – By Any Means Necessary
Caregiver burnout is a real and serious issue. During particularly challenging periods, the concept of “self-care” can feel almost mocking. Traditional self-care suggestions like bubble baths, manicures, or yoga retreats are often unrealistic, especially now. However, self-care is still crucial, even if it looks different. The key is to lower the bar and redefine what self-care means in this context.
It’s perfectly acceptable to stay in sweatpants all day.
It’s okay to take weeks to respond to texts or miss virtual social events.
Relaxing screen time rules becomes a necessity, not a failure.
Letting your child wear their favorite (slightly dirty) shirt for days might be a battle worth skipping.
Hiding in the bathroom with headphones to watch comedy skits for a moment of laughter is a valid coping mechanism.
The point is, rest is essential. Remember, like historical pandemics, this too shall pass. The intensity of this period is temporary. The duration of this challenge is precisely why it feels so difficult – but it also means we are closer to its end. As we navigate each day, extend kindness and compassion to yourself. Treat yourself with the same understanding and encouragement you would offer a friend in the same situation. And know that I feel that I learn with others going through similar experiences, and this shared journey, though challenging, reminds us of our resilience and strength.
