I am adding an extra blog this week as my daughter is starting a new program this month which I am extremely excited about. One that shares in our visions and aligns with our thought processes as parents and as a community of adults with disabilities. To fully grasp the extent of this excitement, I wanted to provide some background regarding the journey and perspective of "moms".
Raising a child with disabilities is a unique adventure filled with its own set of challenges and special moments. Each parent's journey is different, but there are common experiences that many moms of adult children with disabilities share. This isn’t about heroics or self-sacrifice; it’s a real glimpse into the daily ups and downs, and the everyday moments that make up this journey.
One of the biggest challenges is figuring out all the available services and support. Many moms start this process when their child is just a toddler. The paperwork, appointments, and meetings can be overwhelming. As children grow up, the complexity doesn’t go away; it just shifts. Finding the right help, pushing for the right services, and managing all the details is a full-time job.
Money issues are also a big concern. Many families spend a lot on therapies, medications, and special equipment. The financial strain can be tough, especially when parents think about the future and how they might need to support their child for a long time. This part of caregiving is often not talked about openly but is a serious worry for many families.
When children with disabilities grow up, it can feel like the support just vanishes (it actually does). Once school is finished, they also age out of other programs that were available to them as a child. There just aren't many good quality services for adults, and the few that do exist are often too expensive for most families to afford. As parents, we become the teachers, counselors, and caregivers for our adult children, not just for a few years but indefinitely. There's no "graduation day" where they become independent, and that reality can be overwhelming. It’s a tough road, and many parents are doing it all on their own, trying to give their children the best life they can with very little help.
Emotions can swing from frustration to joy. There can be frustration with paperwork or setbacks, but then great pride and happiness when our child reaches a goal or milestone. These feelings can change quickly. Some days are filled with small wins, while others feel like a series of obstacles to tackle.
For some parents of adults with disabilities, dealing with high anxiety and behavioral issues are still a daily struggle. These challenges don’t go away with age, and they can be exhausting. When your child is anxious or acting out, it’s physically, mentally, and emotionally draining. You’re constantly on alert, trying to calm them down or manage situations before they escalate. It takes a toll on your body and mind, leaving you feeling worn out, yet you keep going because they need you. It’s tough, but you find a way to push through each day.
Feeling overwhelmed isn’t a sign of failure; it’s just part of the journey. Moms often deal with many emotions—hope, fear, frustration, and love. They might feel alone compared to friends who don’t have the same experiences, but they also find support and understanding from other families in similar situations.
In the world of disabilities, even the smallest wins can feel like huge victories. I remember a parent sharing that her daughter used the phone to call her without help. It seems like such a simple thing to most people, but for her, it was a big step. They had been working on it for weeks—going over numbers, practicing how to talk on the phone—and one day, she just did it on her own. Moments like that are what get us through the tough days. When everything feels overwhelming, these little successes remind us that progress is being made, even if it comes slowly.
Each win, no matter how small, is a reminder that they’re growing, learning, and doing more than they did yesterday. It gives us that extra boost to keep going, knowing that our hard work is paying off. Though the light is only shed on them - their achievements. The most important thing for a mom is for her children to shine.
These achievements often bring a strong feeling of pride. Seeing an adult child handle their responsibilities or just enjoy a happy moment can be very rewarding. These are the moments that make the daily struggles feel worthwhile and provide a sense of accomplishment and hope.
Programs and organizations that support people with disabilities can have a big, positive impact on society. They help raise awareness, make things more accessible for everyone, and create more inclusion in everyday life. But we need more of these programs, and they need to be affordable so everyone has a fair chance to be their best.
A lot of the work that goes into raising a child with disabilities happens quietly, behind the scenes. Along with the regular mom tasks like making meals, doing laundry, shopping, paying bills, cleaning the house, being a mom to siblings and a wife, most people don’t see the hours spent searching for the right resources, like therapists or programs, or the time spent giving emotional support when things get tough. There are constant daily adjustments, like changing routines to help them feel more comfortable or managing meltdowns when they’re overwhelmed. Helping with their personal care on top of the developmental focus. It’s a lot of hard work that often goes unnoticed. People might see the smiles or the good days, but they don’t always see the dedication it takes to make those moments possible. It’s a full-time job that requires patience, love, and a lot of behind-the-scenes effort.
The effort moms put in behind the scenes shows just how much they love and care for their children. They don’t do it for praise or recognition; they do it because they understand what their child needs every single day. Whether it’s finding the right support, calming their child during tough moments, or adjusting plans to make things easier, moms are always there, working hard. They quietly make sure their children have the best life possible, even if no one else sees all the work that goes into it. It’s all done out of pure love and dedication.
Creating and maintaining a support network is crucial. This network can include family, friends, support groups, and professionals. Each person or group can provide valuable support, advice, or just a listening ear.
Connecting with others who share similar experiences can offer reassurance and practical advice, making the journey feel less isolating.
Sometimes, it’s not just about finding people who understand but also about explaining things to those who might not. Sharing what it’s like to live with a disability can help others be more understanding and supportive. It’s not about asking for sympathy, but about helping people see and understand the daily reality of their lives.
Being a mom of a child with special needs often comes with judgment from others. People may not understand why your child acts a certain way or why you handle things the way you do. At first, you feel the need to explain all the time—why they’re overwhelmed, why routines matter, why certain things are hard, why you react or don’t in certain situations. But after a while, it becomes exhausting and even hurtful. Constantly explaining yourself can wear you down. Over time, you stop explaining and just keep going, knowing that you’re doing what’s best for your child, no matter what others think.
Living with a disability isn’t just about challenges. There are also many unique joys and connections that come with it. My daughter, Laura, is a perfect example of this. Everywhere we go—the grocery store, the library, community events, or even just walking down the street—people know her. She has this amazing network of acquaintances and friends because of her sunny disposition and love for people. It’s not uncommon for someone to smile and wave, and I have to ask, “Who are you? How do you know my daughter?” The answers are always different, whether it’s from camp, school, or just meeting her in the community. Laura greets everyone, even strangers across the street, and it brings so much warmth to those around her. She truly loves people, and they love her right back.
Over the years, we’ve been lucky to meet some amazing therapists, medical professionals, support workers and music teachers as well - some of whom have become a big part of our lives. They’ve helped my daughter grow, learn, and navigate challenges, but they’ve also become good friends. We’ve built strong relationships with these people because they truly care about her and our family. It’s more than just their job—they celebrate the small wins with us and are there during the tough times. The bond we’ve developed with these incredible professionals has made such a difference, and we are grateful for the support and friendships they’ve given us along the way.
Moms often find ways to celebrate their neurodiverse children’s uniqueness and achievements just as they do for their neurotypical children. They learn to adapt, find joy in surprises, and appreciate the small moments that make life special. I wrote a short poem one evening – thinking about this topic.
A Mother’s Heart
In the quiet of the night, when the world’s asleep,
I sit by your side, my love running deep.
Through days full of challenges and nights that are long,
You’re the melody of my life, my heart’s gentle song.
Each day is a journey, both big and small,
With moments of triumph, and sometimes we fall.
But in every stumble and every tear,
I find strength in your smile, I hold you near
The world may not always see what we face,
But in every shared glance, I find grace.
Your laughter, your struggle, your dreams take flight,
The stars in my sky, the warmth in my light.
We’ve built a world together, just us two,
Filled with hope and courage, and love so true.
Your strength is a beacon, your spirit so bright,
Guiding us through the darkest of night.
So here’s to the days, both easy and tough,
To the love that we share, the bond that’s enough.
In this journey we travel, side by side,
I’m grateful for you, my joy, my pride.
This journey is about growth for both the parent and the child. Raising a child with disabilities can lead to better understanding, empathy, and strength. It’s a process of learning and adapting that affects the whole family.
At its core, it is about navigating a complex and challenging life with love and perseverance. It’s a reality filled with both struggles and triumphs. It’s not a story seeking pity or accolades but a true account of what it means to walk this path.
For those who may not be familiar with this experience, understanding these realities can offer a new perspective on the dedication and strength that define the lives of special needs moms.
When you meet a mom raising a child with disabilities – know that her story is one of deep commitment, daily challenges, and incredible strength.
It’s ordinary and extraordinary all at the same time.
I would just like to take a moment to express my heartfelt gratitude to all the moms of children with disabilities that I have the privilege to know - moms who serve as a constant source of inspiration and strength to me.
Your unwavering love, dedication, and resilience are a beacon of hope. Your daily challenges and triumphs remind me of the incredible power of a mother's love.
Thank you for your tireless efforts and for being a shining example.
Your strength is truly extraordinary, and you are an inspiration to me every single day and to everyone around you.