Parenting a neurotypical child is hard enough. There are the sleepless nights, the worry over their health and safety, and whether they hit their milestones on time. However, parenting a child with special needs is a whole other level.
Neurotypical children go through normal developmental phases, from crawling to walking, from babbling to speaking and reading, from puberty to adulthood, and eventually living independently. The same may not be true for children with special needs. Parents of neurotypical children may find peace knowing their child is “going through a phase,” and that phase will pass. But this isn’t a reality for many children with special needs. They may have phases that never pass.
As the parent of a child with special needs, I recognize this is your life—it’s your daily reality. But I don’t believe enough people hear about it. So, in this article, I’ve curated real-life experiences from parents and family members who have shared them on online messaging boards. Then, I’ll paint a picture of what life really looks like in the trenches.
These stories contain a few common threads: emotional and financial strain, isolation, and the challenges of advocacy and education, and in spite of all this, strength and perseverance. I’ll touch on each of these here, describing each experience from the lens of someone living it. I hope I can do these stories justice.
We’ll start by addressing the emotional strain most families of children with special needs face daily.
Emotional Strain
The most common experience shared in message boards was a great emotional strain that affects every facet of life. Here’s a glimpse of what it looks like.
As the parent of a child with special needs, every day can be an emotional struggle. An inner conflict tears at you, pitting your deep love for your child against the resistance to accept your new reality. This tension colors every aspect of your life, leaving you constantly torn between your emotions and the relentless demands of caregiving.
You face relentless challenges day after day. Sleep eludes you, sometimes even long past your child’s infancy. You or your other children may have alternative sleep schedules, so someone is always available to help your child. Even during the day, you must remain on high alert for anything that could happen, especially when your child is inclined to harm himself or others. Day or night, day in and day out, your stress levels are constantly elevated. The stress takes its toll on not only your emotional health but your physical health. You may even feel like you’re aging faster than your peers.
As a parent, it’s heartbreaking to watch your child unable to connect with others, whether it’s other children or family members. It’s gut-wrenching to observe the way people treat your child. You feel their pain when they aren’t invited to classmates’ birthday parties. You feel resentful when family members are scared of your child.
Perhaps most of all, you grapple with extreme worry about the future. Your mortality is frightening. The question haunts you: who will care for your child when you no longer can? Even your other children, who often become their sibling’s caretakers, may be unprepared for the responsibility. You worry that if your child ends up in a facility, they may be neglected or abused.
Even though you love your child, you may feel that life has dealt you a blow. You didn’t ask for this existence. You had hopes and dreams for your child and grapple with the fact that those dreams may never be possible. It tests your resilience in ways you never imagined. When you’re able to find acceptance - not only of your child but also of the situation - you can view your child as a beautiful gift.
Financial Strain
Many parents also shared experiences of great financial strain on their families. Here’s what they described.
As a parent of a child with special needs, you face constant financial pressure, even if you have financial means. The costs required to support your child's disability properly can be overwhelming. For example, you may need to pay for help when you can't provide it yourself, and even basic caregivers cost upwards of $20 per hour. That expense alone can strain your budget to the breaking point. You may have had to quit your job to provide round-the-clock care, significantly reducing your household income. Alternatively, you might realize that many jobs don't pay enough to cover the cost of proper care for your child, making it financially unfeasible for you to work outside the home. These expenses are merely a few you may encounter. The financial strain adds another layer of stress to your already challenging situation, leaving you constantly worried about meeting your child's needs while maintaining financial stability.
Isolation
The isolation many families experience can be soul-crushing. Depending on your child’s mood, behaviors, and tolerance of certain situations, you may not be able to take your child out in public. Stores and restaurants are out of the question. Sometimes, even schooling for your child is impossible. The cost may be out of reach even if you can’t find a specialized school to support your child. That means homeschooling and limited socialization. Your family may not want to be around you because they’re uncomfortable around your child. Not being welcome at family gatherings can be especially painful.
You may lose friends because it’s hard for others to relate to your situation. Parents with neurotypical children can’t understand, so they stop inviting you to social events (you may not be able to go anyway because your child needs constant supervision). This isolation can creep into your relationship with your partner, too. You find no time to be alone together as your child's needs always take precedence. You feel the strain on your marriage, with resentment building and the risk of divorce looming larger than it might for other couples. The weight of this social and emotional isolation often leads to depression. You feel disconnected from the world around you, struggling to maintain your mental health while providing constant care for your child.
Advocacy and Education
Many parents describe a nonstop effort to advocate for their child, fighting to ensure others see their child as a full human being rather than just a disability.
As a parent of a child with special needs, you find yourself constantly battling for support for your child. Even though your child is entitled to legal and governmental support, it may be hard to obtain. Government and nonprofit agencies offer structure, stability, and oversight but are chronically understaffed, leaving you waiting and waiting for solutions. Private care programs offer quicker solutions but at a much higher cost. It can be extremely frustrating.
You must repeatedly inform and educate others, including doctors, teachers, and school administrators. Situations other parents take for granted, like sending their children to summer camps, can become a huge hassle. You may face particular difficulty in finding a suitable group home for your adult child with behavioral issues. This constant need for advocacy becomes a full-time job, draining your energy as you fight to ensure your child receives the support they deserve.
Strength and Perseverance
Despite the overwhelming challenges described above, one thing that stood out to me was that many parents find ways to persevere. They described discovering a resilience they never knew they had, learning to accept their child's condition and the unpredictable nature of life itself. While incredibly difficult, the journey can lead to profound personal growth and a deeper understanding of what truly matters: love.
I Can Help With the “What Do I Do About the Future?” Question
As a Personal Family Lawyer® Firm, we want to help ease your anxiety in any way we can. We may not be able to help your child feel more comfortable in crowds, but we can help you figure out the answer to the question, “What do I do about the future?” That's why we offer a personalized approach and a comprehensive range of estate planning services, including Special Needs Trusts and legal guardianship nominations, to create a plan that’s unique and ensures your child’s success. As a trusted advisor, we’ll walk you through all your options and set up your plan so you can have peace of mind about your child’s future without you.