Raising a disabled child is not for the faint of heart and our families don’t request this path, but we are on it, and we need to share it with you, society, because we can’t be invisible anymore. We need your help and support. We need you to see the cracks so you can pull us out of them and seal them up and keep us from disappearing within them. We need you to accept us and allow us to live in the same world you all get to live in and enjoy. Please invite us back, we have so much to teach you, we have so much to give.

1. Child Care and Wages

When Asher was nine months old, I finally gave up the idea of going back to work. I had taken an extended leave of absence and could have extended it for another three months, but by then I knew three months wasn’t enough time to get us back on track. We were only getting more and more referrals and therapy visits each time we visited the doctor for regular checkups.

The loss of my income was a huge blow as my husband was just finding his footing in his career, and he was making less than enough to support us. We were in the negative each month and when I quit, we only had six months of savings to keep us above water. Thankfully, my husband got a raise after a few months, and it worked out by the skin of our teeth. This does not happen for most of our families, and it puts them in a spiral of uncertainty and stress. Listen to me when I tell you, we don’t need more stress than we already have.

I beg you, find ways to accommodate our children. Allow them into your institutions without being potty trained, with trach’s and vents, and g-tubes. Give them a quiet space or a stimulating space, accommodate them. Give us a place to hand them off so we can work or rest or just be, so we can be mentally and physically stronger for our children that need us.

2. Emotional Support for Caregivers

When we receive a discouraging diagnosis or begin to understand our child has developmental delays, and don’t know why or what to expect, we lose the image of our child’s once predictable future. No one ever imagines their child is going to be disabled and all the added complications of that life. When we begin to realize our child won’t be walking the same path as a typical child, there is a shattering. All the moments imagined in our mind are erased and there is nothing to hold onto. Our families become desperate to reimagine what the future will hold, but it’s impossible because no two disabled kids are alike. There is no reliability and there is no typical path. And the loss of predictability is the hardest to accept because it is scary, we are scared.

Very few psychologist and mental health professionals understand how to support and strengthen our caregiver’s mental health during these extreme and long-term challenges of raising a sick and disabled child.

We need more resources from the moment our children appear to have higher needs, so we can mentally prepare for a road that is no longer mapped out in front of us. We need to be able to reframe our minds around an alternative life than we had originally planned. We need someone to tell us, things will be different, but they will still be okay.

Doctors, therapists, social workers, and teachers can all pitch in to support parents and caregivers by giving us realistic expectations. They can emphasize instilling joy in our child’s day-to-day life and help parents understand they have a trajectory that will look different from that of a typical child, and that’s okay and welcome. Help our families rewrite the image of an alternative path, a good one. Help us understand that our children will be happy, well adjusted, and get exactly where they are meant to go as long as we are there as their parents, supporting them like we would for typical kids. We don’t need to harp on what they aren’t doing or may never do. We need to know what we can do now to enjoy every moment with our child the way it was meant to be.  

3. Familial and Community Support

Believe it or not, we lose support from our families and communities, especially when our children exhibit behavioral issues. Often, the blame is placed on the caregiver for not doing enough or not raising their child properly. People tend to become uncomfortable around us, like we are the elephant in the room. They don’t want to hear how difficult our life is on a daily basis, and they quite frankly become scared, and instead of stepping up they turn away. They just don’t know what to do to help us and it seems an impossible task.

Our families face a lifetime of challenges that will change as time passes but will never go away. When a person gets sick with cancer, there is a timeline, everyone rallies around you and eventually the person dies or gets better, and their need for support disappears. That’s not the case for our families. We would love your help, your compassion, and your time to help us survive every single day for the rest of our child’s lives.

We need you to be more inquisitive and investigative. Is our lawn out of control? Can you help with food or childcare? Can you hang out with my disabled child so I can pay attention to my neglected typical kiddo? Can you make it easier in some way, even if it’s holding the door when we are trying to navigate our over-sized stroller through a doorway while everyone watches? Please, watch, listen and ask. We need you but we have been doing it so long on our own, we can’t comprehend all that we need and all that we are lacking in support. You can do this; you can step up.

How We Can Help You Too

Our families have stepped over to the other side. We are now on the outside looking in. We finally understand what it has been like for so many disabled people and families before us that looked differently, thought differently, and behaved differently; and we are horrified with ourselves, our communities, our society, for being so exclusive.

Going through raising a disabled child, I now see, have compassion and an appreciation for all walks of life. I can almost instantly tell when a person is disabled or neurodivergent, and I don’t look away like I once did. I smile because these people are human. Our children are human, and they turn into human adults. Adults that need love just like you do.

In sharing this information with you, I hope to give you the gift of perspective without you ever having to go through what we have had to go through. We won’t turn our backs on you if you don’t turn them on us.