Parenting special needs children comes with a whole host of emotions that can be difficult to deal with. One of the most difficult for so many of us is the isolation we feel. When our children are diagnosed, we tend to pour ourselves into the diagnosis. We research, talk to experts, doctors, school counselors, therapists, special education professionals, all in an effort to help our kids have the best life possible.
In all the preparation and planning we do to help our children with disabilities, we fail to prepare ourselves for the journey. We don’t realize just how life-altering raising a child with special needs will be. We might find ourselves going through a wide range of emotions including denial, anxiety, sleep deprivation, depression, loneliness, and grief. Just hopefully not all at the same time!
Unless you’re one of the lucky few, the isolation can almost become an even bigger battle than the diagnosis.
This post addresses some of the hard realities of being a care provider for special needs children. I am real, and honest in posts like these because sugar coating the truth isn’t helpful. My goals in writing honestly about the difficulties of parenting children with disabilities is to bring awareness to those on the outside looking in; and, to give comfort to those in the trenches by letting them know they’re not alone.
The hard truths of special needs parenting are no way a reflection of how we feel about our kids. We love our special needs kids and would move mountains for them. They have brought so many blessings to our lives as well. But those blessings do not mean we can’t talk about the hard things too. This post should not be taken as a complaining mom, but rather as a mom who is just being real, open, and honest.
The Early Years
When our special needs children are still toddlers, the social isolation doesn’t really set it yet. Play dates are still relatively easy because our children are still at an age where the mommies and the babies are all on the floor together participating. Depending on the diagnosis our children have, there might not be a huge developmental gap between our kids and our friend’s kids.
During this time we still have our friendships and social lives. We can still visit each other’s houses without much thought for accommodating our child‘s needs. Sitting on the floor chatting with other moms while our children play together with a little guidance and minimal behavioral issues is still a reality.
The early signs of isolation do start to present themselves during the first few years, but we usually don’t see it. We spend a considerable amount of time traveling for doctors, specialists, throwing ourselves into therapist interventions and learning what we can. We can’t go on as many social outings, meet at the park as often, or join in on a walk with our friends in the community because our schedules revolve around all of these appointments.
When the Isolation Escalates
Then it happens. Our kids start getting older, but they’re not meeting social, physical, emotional, and mental milestones. Not only that, but the gap between our special needschild‘s abilities and that of their typically deveoping peers grows. What was once a small dip we could easily step over has suddenly become as wide as the grand canyon.
Suddenly, we can’t do playdates. On the rare occasion we’re still invited for a play date we find ourselves facing hard choices. While other kids are now free to run and play, our child isn’t capable. For special needs moms, this means we have to choose. We stay with our child and help them participate with the other kids as much as possible; or, we sit and socialize with the other moms (making our child sit with us).
No one wins in this scenario. Loneliness sets in one way or the other. Either we as moms miss out on a conversation with other moms, or our child misses out on being with her peers. This, of course, is happening at a time when these relationships are crucial to us. The worst part is, those on the outside of special needs parenting don’t see it restraint and seclusion thrust upon us.
I can’t tell you how many times I have chosen to be by Ladybug’s side, excluding myself from the circle of moms and no one stopped to think of coming alongside me or joining us. No one realizes that if my kids are with me, I can’t participate. While it’s easy to say that it’s only for an hour or two. The emotional toll of this social isolation escalates when it happens every. single. time.
Isolated at Home
Of course, the big part of isolation comes from the fact that it takes a LOT of work go to places with our special needs kids. Most people assume that this special needs mom gig gets easier with time , but that simply isn’t true. While we have accepted their diagnosis and our new reality, their level of care increases with time. Meaning many things actually become more difficult. Raising a child with special needs and coming to this realization naturally leads to even more stress, anxiety, depression, and grief.
So many places are not as accessible as the non-disabled community would like to believe. Adequate bathroom facilities for special needs families are becoming a bigger problem as our children grow. The ability to contain an autistic meltdown gets much more difficult as their bodies get bigger, stronger, and more aggressive. We need to consider things like wheelchair accessibility, and the amount of sensory stimulation our kids will be exposed to before going anywhere.
Many times it’s just easier to stay home.
The Isolation is a Natural Progression
The worst part of the isolation reality special needs families face is that it’s no one’s fault. There is a natural progression to it. As our kids get older we don’t participate in the same activities. While our lives revolve around doctors, procedures, and therapies, everyone else is pouring their time into sports practice, dance lessons, gymnastics, boy/girl scouts and every other “normal” community activity kids participate in.
Our paths no longer cross. We no longer relate to each other on an emotional level. It’s hard and it takes an effort to be friends with a special needs mom. I don’t say that to sound harsh, but it’s the truth. It is much easier to maintain friendships with other moms you can relate to. It’s a fact. Yes, it’s a sad fact, but it’s still a fact.
Babysitters are Hard to Come By
This is a fact that many don’t even think of. When we look for a babysitter we need to consider things like the person’s ability to lift our child who is completely dependent on us for transfers. Are they comfortable with the fact that it’s possible our child will have a seizure? Can these care providers recognize when our child is overstimulated and about to have a meltdown if they don’t intervene?
I’ll be honest, most people are freaked out by the idea of babysitting our special needs children. I get it, really. I mean this is like foreign territory if it’s not your everyday life. It’s intimidating, I acknowledge that. I’m not placing blame or trying to guilt anyone who would be uncomfortable babysitting for children with asd ,cerebral palsy, asperger syndrome, or other disabilities. Trust me, as a parent I get it, it’s hard. I’m simply stating that this is another hard reality keeping us isolated from the outside world.
We Spend All Our Money on Medical Needs
Our lives are filled with medical appointments, procedures, equipment, teachers, home modifications, therapies, special education coordination, adaptive devices, time missed at work (assuming we even CAN work outside of taking care of our children).
Needless to say, we simply can’t go out to eat, grab drinks, or buy tickets to events. When the group goes out, we need to stay home. What was once just a normal Friday night activity, is now a luxury.
The worst part of this reality is that when it comes to kids with disabilities, this reality doesn’t end. Our kids will always have these expenses.
Sometimes the isolation of raising special needs kids comes from ourselves too. There are times we simply don’t have the energy. There are many nights of sleep deprivation due to hyperactivity, manic episodes, reactions to medication, daylight savings changes, weather, etc.
I have a saying: If I’m awake, I’m tired. This special needs mom gig is exhausting, and it never lets up. So, on the rare occasion, we have the chance to get a little respite care and go out with friends, we’re probably too tired to really enjoy it.
Then, of course, there is the emotional energy it takes. Like I mentioned above, it’s hard for us to relate to others. Conversations are difficult. They’re difficult because it’s hard to talk about our situation as caregivers. If we are honest and share our struggles it’s perceived as if we’re complaining and we don’t love our kids (which is why I added the disclosure to the top of this post). So, we feel the need to put on this mask and pretend that everything is all sunshine and rainbows (which is probably also not great for our mental health). Why? Because the last thing we want is further isolation because of the negative perceptions that tend to come when we are honest and vulnerable.
Sometimes it feels like I live frozen in time. I can look around and see the world moving around me. I see other families growing, laughing, and enjoying life while we’re standing still. That’s what isolation feels like.
What Can We Do?
Isolation is real, I know I’m not the only special needs mom who struggles with this. If you’re a special needs parent like me, try to find time for self care – maybe even support groups if that option is available to you. Make sure you’re working on your marriage . Get professional help if the isolation is consuming you and bringing on depression. Of course, remember all the blessings your special needs children bring to your life.
If you’re not a special needs mom, I simply ask that you don’t forget about us. I know it’s easy because we don’t run into each other at the kid’s activities; but, we’re still here. We need your friendship now more than ever.