One of the most challenging conditions to manage alongside Autism is Epilepsy.
Whether you’re parenting a child dealing with Absence Seizures or Tonic-Clonic (Grand Mal) Seizures, one thing is for sure: it’s a challenge to ever feel like you can wind down and not be on guard 24/7.
My family’s experience with seizure activity was short-lived, but it was an incredibly stressful and uncertain time for us. That’s why I’m here to offer guidance, resources, and a reassuring voice of support to help you manage the challenges of parenting an autistic child with epilepsy.
Understanding the Overlap
Epilepsy and autism are both complex conditions that can present in children.
Epilepsy is a neurological disorder characterized by recurrent seizures, while autism is a developmental disorder affecting social interactions, communication, and behavior.
It's not uncommon for these two conditions to coexist, and understanding their intersection is crucial so you can provide the best care and support for your child.
Navigating the Diagnosis
Receiving a diagnosis of epilepsy for your child can be overwhelming…especially if you’ve already received an autism diagnosis.
Reach out to medical professionals, specialists, and support networks who can provide the knowledge and assistance you need. Knowledge is power. Arming yourself with information will enable you to make informed decisions for your child's well-being.
These are some helpful resources to learn more about Epilepsy and how to manage it:
Creating a Supportive Environment
Creating a supportive environment is key to helping your child thrive. Establishing consistent routines, providing clear communication, and creating sensory-friendly spaces can make a world of difference. Tailor your approach to your child's unique needs and preferences, to ensure they feel safe, understood, and valued.
Seizure Management
Seizures can be a significant concern for children with epilepsy and autism. It's essential to work closely with your child's healthcare team to develop a seizure management plan.
Educate yourself on the different types of seizures your child may experience, learn how to recognize their specific seizure triggers, and familiarize yourself with appropriate first aid measures. This knowledge will empower you to confidently handle seizure situations and ensure your child's safety.
Communication and Social Skills
Autism often affects communication and social skills, and this can be further compounded by epilepsy.
Encourage and support your child's communication development through various techniques, such as visual aids, social stories, and speech therapy. Engage in social activities and playdates to promote interaction and build essential social skills.
Advocacy and Support
No one can advocate for your child like you can! Be proactive in seeking support services, educational resources, and therapy options tailored to the unique needs of your child.
Many states offer additional resources for navigating this process and may have income waivers so you can apply for the Katie Beckett waiver and access Medicaid for your child based on their disability. For more information on how that works in my home state of Idaho, click here.
If they’re enrolled in a public or private school, your child will most likely need an IEP or 504 plan. If they’re under age 5, they may qualify for developmental preschool with your local school district.
Your local Parent Resource Center is always there to help you navigate the challenges of educating your child and getting them the support they need (and are entitled to). You can discover how to contact your local PRC here.
Connect with support groups, online communities, and local organizations where you can find a network of parents who understand your journey and can offer advice, empathy, and encouragement. Facebook can be a great resource for finding local groups.
If you can’t find a group specifically for epilepsy in your area, most likely there is one for autism or “special needs.” Once you join, you’ll be able to ask about additional resources for your family.
Don’t Forget Self-Care
With all you have to do managing your child’s autism and seizures, it can feel like there’s never any time for you. And it sucks. Trust me, I know.
I can tell you from experience that forgetting about taking care of myself during the most challenging times of my motherhood journey cost me years of my life. If I knew then what I know now, this is what I would have told myself:
"You’re doing a lot right now, and all of it is hard. I know you feel like you don’t have any more to give, but if you don’t take care of yourself, and spend some time focusing on your needs, the resentment you feel is going to build up to a place where you can’t come out of that hole on your own. Better to take a few minutes each day to focus on yourself. No matter how tired you are, you are not entitled to your overwhelm. Ever."
Here are the links to a few of my favorite, quick, self-care ideas:
Conclusion
You’re doing a great job parenting your child! By understanding the overlap between epilepsy and autism, creating a supportive environment, managing seizures, fostering communication skills, and advocating for your child's needs, you’re providing them with the best chance to thrive.
Remember, take time for self-care, lean on your support network, and celebrate every milestone achieved...even if it seems small. You are not alone! Together we can create a world where every child with epilepsy and autism can reach their full potential. And every parent can get the self-care they need to do the same.
Disclaimer: This article provides general information and support. It's essential to consult with qualified healthcare professionals for personalized advice and guidance. This article is not medical advice, and should not be treated as such.
This article is part of our series on Autism and Co-Occurring Conditions…check back on August 2, 2023, to view the complete collection.
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