Peeking into another world

I belong to several parent communities, on Facebook as well as LJ and they are all for parents of children with special needs. Some focus on developmental delays, others on mental issues and all of them welcome ANY parents of ANY child to join. The communities primarily exist for the parents to exchange information, give advice and vent or cry to other parents who understand the difference in parenting a child with special needs.

I joined those communities long before Lil Miss was born because I have TWO sons who are on the Autism spectrum. I have been parenting them for a long time now and most of what I have learned and accomplished was on my own, without the internet. I think it is AWESOME to have the internet available now for parents of special needs kids. Parenting a child with special needs can be scary and lonely and painful too.

I remember how scared and alone I felt in my early days. I *was* alone. I didn’t have any groups, real life or online, to go to with my questions or fears. I only had a few knowledgeable professionals I’d see on occasion who could answer my medical and developmental questions. But they couldn’t help me know how to navigate being a parent. When I was raising my boys? There was almost no one to ask for help.

These communities are what I needed back then, what I could have really used when times were dark and I wasn’t sure whether I was doing anything right. Because these communities are created for exactly those times. Members go and ask questions, post doubts, and check for clarifications. I had no place like that to go when I wanted to ask for help. So that’s why I’m in these communities. Because whenever I see a parent crying or asking for help, I want to give them what I needed back then. Whether its real life advice, technical questions (to help clarify confusing situations) or just commiseration, I never hesitate to join in when someone seems like they need help. Or commiseration. There’s a lot of commiseration. A LOT.

Let me explain something about commiseration. When you are the parent of a special needs child, one recurring issue you wrestle with is whether you’re “allowed” to be frustrated or afraid or angry about anything having to do with your child. Parents in general get a lot of guilt trips heaped on them by society but parents of special needs children get an extra helping. People are always telling us cute little homilies that are supposed to inspire us or something, I was never sure but usually all the do is bring us down. Because those cute little homilies (much like the advice we get on a CONSTANT basis) usually make it clear the person giving them has absolutely no clue as to what we are going through. Its much like if you wanted to give a “get well soon!” card to a person dying of cancer. You think that’s sweet but to them, it underscores that you really do not understand the dire reality of their situation. So we tend to be quiet about our struggles and shrug them off in mixed company. If we aren’t getting pithy little saying to lift our spirits (we’ve heard them ALL) then we’re being told that we’re doing everything all wrong, that our children are just horrible little brats who need a good spanking. Or that we’re too harsh on our darling children who only act up because they need attention. Or we’re just trying to avoid being REAL parents (whatever that means) because there’s no such thing as (whatever diagnosis you let them know your child has). We have probably heard every blame-shift saying imaginable. So we tend to shy away from other non-parents and grow thicker skin. But that’s hard when you are lonely. Parents are like anyone else; they need companionship. They need socializing too. But for many of us, socializing is a difficult chimera. Some parents of special needs children can actually leave their child in carefully constructed circumstances but some cannot even do that. For some parents, online is the ONLY socializing they get for long stretches of time. These communities serve us in so many ways. They are precious.

In all my years of being online, I’ve been in many communities for different reasons but I have ended up staying only in the special needs parenting communities. Because in no other community have I ever known a group of people more loving, supportive and understanding than parents of special needs children.  I have made lifelong friends and had some really amazing times with these people – people I have never met in real life and probably never will. Because we share some experiences that NO ONE can really understand without having been there – so we don’t judge. Ever.

We don’t ever tell someone they are doing something “wrong” or “bad” with their children. Never. We believe that “support” means lifting someone up. Even when we feel someone is making questionable choices, we discuss them lovingly, give advice gently and are always ready to step back and accept that we may be the ones who are wrong. Because when you parent a child with special needs, you find out very quickly that no one can possibly really know someone elses situation. So we are there for each other, even when someone is losing their mind, screaming, ranting, venting, crying maybe even shaking their fists in rage at the universe for their troubles.

We don’t care.

We hold them up anyway and wait for the end of the tears. Because we understand that sometimes its all you can do.

We recognize every parent as being fallible and human.

We know that because you are in this community, you care. You love your child, you want to do right by them and you are ready to be helped by others. You’re humble. You’re accepting. You’re loving.

Because if you can’t be those things, you can’t parent a child with special needs. Its part of the territory and we know it.

So if you see me make comments occasionally that seem callous or cold and clinical… if you see me tell someone its okay that they freaked out on their child… if you see me admit to losing my shit or raging against the universe too.. understand, this is who we are. Its how we manage to do what we do day after day, year after year and still keep hope alive. It’s not negativity, it’s honesty and acceptance. Acceptance of what we are dealing with and who we are.

We laugh whenever we can, bite our tongue when we have to and pick ourselves up off the floor more times than you can possibly imagine. Trust me, its not the same as parenting a “normal” child. It’s really not. It’s hard in many ways. It’s joyful in many ways. But it’s our unique journey and we navigate it best for us. If you see a glimpse of it, watch us for a few seconds, you might not understand what we are about.

Just trust us.

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3 thoughts on “Peeking into another world

  1. Thank you, I’m the father of a seven year old with autism. sometimes it’s just nice to hear from other people that they are going through the same things and that they are equally frustrated. It would be tough without the community.

  2. Pingback: Social Media | smibbo

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