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.
We Get In Our Own Way
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.
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.
Source: https://raisingtheextraordinary.com/isolation-special-needs-parenting/
