I wish you knew:

I often wonder if parents of “normal” children ever read articles posted by parents with autistic children. I wonder how they feel about them. I wonder how they feel about their friends/family members or people they might know that have Autism. If you are one of those people/parents, there are a few things you should probably know about us. The dark side of us. The side we don’t talk about or write about because we are ashamed. The part we keep hidden from the world because we’re tired of being judged, side.

  1. Isolation is a fundamental term used by parents of “special needs” (children with an over abundance of awesomeness) children. Don’t think for one second that we don’t notice the lack of birthday invitations. Don’t think we don’t see your post about what a fun night you had, and yet we were invited to. We know. We notice. We just don’t say anything. It’s like we’re being punished for having children that take a great deal of our time. We try harder than most parents out there, and yet this effort is seen as a weakness. Maybe you think you’re doing us a favor by keeping us isolated. Maybe you noticed that we keep ourselves isolated and therefore you determined that we would say no; so there’s no point in asking? We keep ourselves in isolation so we don’t cause unneeded stress for our children and those around us. We know you don’t know how to act when they have a meltdown. But that doesn’t mean that ignoring us is the right course of action. We need our friends now more than we ever have before. And all too quickly, we find out how many “friends” we really have.
  2. When you complain about lack of sleep, I will ALWAYS laugh. I’m not about to even TRY and hide how ridiculous your complaint sounds. Sleep deprivation and children with Autism, practically go hand in hand. Rather it’s a complete and utter lack of naps in the middle of the day, or the night terrors that shake the house every hour during the night; we live in a constant state of zombieness. We haven’t slept since our child was born. When you complain about working so hard and you were sick and didn’t sleep? Yeah, add onto that; your child was barfing up snot, your child was screaming every hour, and you had to show unconditional love and restraint while the light of your eyes hit you in frustration from the terror of their dreams.
  3. Complaining about not having enough “fun money” is not only rude, but heartless. Take into consideration, the fact that most families with “special needs” children are on the brink of living on the streets. Between doctor visits, OT visits, Speech therapy visits, physical therapy visits, gas, special equipment for speech, sleep and such, the list goes on for our expenses that are not “fun” but essential. Does your child require a $200 piece of equipment with a $400 ap to help them talk? Will your child only sleep in a special made swing that hangs from the ceiling, or needs a trampoline to jump for sensory input? How about food costs because of the child’s dietary restrictions and needs?
  4. Using the words “he’s getting better” is like saying “great, your son is kind of acting normal and is easier to put up with now.” His “getting better” is hours and hours and hours of hard work and determination that have been used to “train” him to act like “normal” people do; because in our society, he can’t be himself. You see improvement; I see hours of pain and work put into changing my child in order to fit society’s need of him. Can you say the same about your child? Does your child go through training 20 hours a week with professionals (not to mention every waking minute at home) to become “normal?” Maybe if the world was more tolerant, my son could be himself and not be what you WANT him to be.
  5. Almost every waking moment of everyday is spent trying to hold on. We smile, because our children need us to. We use patience because our children need us to. Every waking (and sleeping) hour of the day, is spent trying to help our child. There is literally NEVER time to breathe. You say we look “better” or “I could never have patience like you do.” Guess what? You really could, if you had to, like we do. We don’t have patience like this because we were magically born with it. It has taken trial/error, pain/suffering, heartbreak/ revelations, and deep love for our child, to groom us into what you see. You see us bright and happy, but truthfully, we are ready to collapse at a moment’s notice. We don’t need your sympathy from this, but some compassion and understanding would be nice.
  6. YES! We do wish they would magically “get better.” But guess what? That will NEVER happen. Even when science figures out “what went wrong;” there will still be no miracle pill to “fix it.” This is literally our lives, the good, the bad, and the ugly. Wishing it was better is not going to help us, and you bringing it up is like slicing open an old wound and pouring ghost pepper sauce into it. Our babies were born different in the eyes of others. It’s something we live with everyday. Everyday we try and help them to “fit in” and “be normal” because we won’t be here forever. The thought of them living on without us, is the scariest thought imaginable because; who would care for them? Could they care for themselves? If we could “fix it”, we would only do it so that their lives would be easier, not ours. We are fine killing ourselves everyday for the sake of our babies. We just want them to have a happy life.
  7. We need you to appreciate our children’s “little” accomplishments just as much (if not more) than you need us to cheer on your child’s. Your child’s goal kick may seem more important than my child taking off his sock, but he probably practiced harder and longer than your child did, and he deserves as much recognition for his hard work.

These may seem heartless. These may seem like rantings of parents who “need attention.” It may even seem like I’m ungrateful. But at least I’m being honest. When you ignore a parent with a special needs child; you’re showing them exactly why they stay home. You are reminding them why they stay isolated. If you want to help; get to know the children better. Stay during the hard times and try and help. Offer to take your friend out for a few hours, just for a little distraction. It can go a long way.

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3 thoughts on “I wish you knew:

  1. Thank you for sharing your opinions and I can totally relate. Our children have different needs, yet similar appointments and medical needs. It is overwhelming sometimes when you scroll through FB and see everyone talking about the worst day ever my kid threw up or something that my kid does a million times a day to the point of wow does it ever stop. I can count on one hand how many people outside of my family have taken the time to visit my daughter during her so many hospitalizations and at times critical life events. Some family really does come through but there are others who have no clue what so ever. And when it comes to friends I have many on the internet but in real life I have some who care but they just don’t get around to seeing me which feels pretty much the same as not caring at all some of the time. Well glad at least we have our pens(computers) to let our emotions out that has to be helpful right…

    Liked by 1 person

    1. Thank you for sharing your story. I used to have friends, but after my son’s diagnosis; people keep their distance. It’s a real eye opener to the people you thought you could trust and rely on. It’s like the saying goes; “you never know what you have, until it is gone.” I had no idea my life was easier when it was just my daughter (who had severe anger issues and control issues). But now that I have her and my son; it’s an eye opener. Each time something gets worse, I’m no longer blind to it. I celebrate his good days that much more, and I think it gives me the strength to make it through the hard days. We may not be able to “see” everyone online that suffers, as we do, but through blogs and websites, I hope it at least help people to know they aren’t alone; and that it’s ok to lose hope and be angry with “normal” people. The important thing is to move on and be strong for our little purposes of life that depend on us so much.

      Liked by 1 person

      1. Bless your heart, I too remember the times when it was just me and my oldest and my son as a baby, recently divorced and though life was difficult then I met second hubby and third kid and I learned all about what difficult meant. Glad we can share our emotions it is so helpful for me to know I am simply not alone. I don’t hold these emotions alone others feel the same that is a great thing. I think 🙂 Here’s to better days and recognizing them

        Liked by 1 person

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