An open letter to the world….

The special needs family is a complex and VERY fragile entity. A special needs family faces challenges every minute of every day that most people won’t face in the entire course of their lives. Because of these challenges many friends and even family will leave the special needs family behind. This happens because those friends and family aren’t stong enough to put the needs of the family over their own personal needs. This does not have to happen but it does. The sad truth is, if you ask, most special needs families will tell you they have lost friends and/or family over the years. This is the topic of discussion today. I want everyone to understand what goes on behind the scenes so maybe these losses can be avoided..

Here is my (personal) story. It’s kind of a behind the scenes of what I’m thinking when I do what I have to do. Everyone’s story is different but the principle is the same..

When I  became a special needs parent (almost 10 years ago) EVERYTHING changed. ALL of the plans I had made flew out the window. The future I had envisioned was shattered. What took its place is terrifying and unpredictable. Everyday brings new challenges on top of all the already existing ones. Those challenges come with a significant amount to weight to carry. Over time that weight just continues to pile up and becomes crippling.
My Autistic children are my ENTIRE life. Every second of every minute of every hour of every day is LITERALLY spent caring for them and their special needs. As a special needs parent, I no longer have the luxury of “me” time. Let alone time for anyone else. I can’t call in sick and I haven’t had a vacation in over 10 years. Each of my Autistic children require more time and energy then I have to give and that’s on a good day. Everyday I struggle with the knowledge that the very best I can do, the very best I can offer, is never enough. That’s a horrible feeling and I wouldn’t wish it on anyone.

I find myself no longer living in the present. As a parent to 3 Autistic children I have to constantly be thinking 10 steps ahead. I have to be able to predict problems or situations that can be destabilizing before they occur. That is a very..um..”unique” challenge.  It’s also impossible to predict for the most part at least in new, uncontrolled environments. Things like, sound, smell, touch, texture and lighting can be VERY destabilizing. How do you avoid or control those things? The realistic answer is you can’t. However, as a special needs parent I have learned (for better or worse) to avoid new or unfamiliar situations.  I don’t have the luxury of mistakes. Mistakes can mean HUGE setbacks for my kids. ANYONE or ANYTHING can make waves or otherwise disrupt the VERY fragile balance (if that’s even what you want to call it) we sometimes manage to find.

I can’t just let anyone into our lives. I have to be even more selective of who I trust. On rare occasions I let someone new into our lives. That “someone(s)” should consider themselves lucky (if you want to call it lucky) because they are among a very select few. Unfortunately, through experience, I have learned not to trust people because my children have been hurt and our lives disrupted as a result of trusting the wrong people. Let me explain what “disrupted”means. If something happens to make waves or shake things up my children will meltdown. These meltdowns can will last on and off for days or even weeks.

Let’s look at Gavin first. If something happens that shakes up Gavin’s world he can become psychotic, lose touch with reality and begin hallucinating. Don’t forget the violent, house shaking meltdowns that can happen half a dozen times a day. Also self injury becomes a major issue.  We then find ourselves in the horrible position of having to admit him to the hospital psychiatric ward for medical stabilization and to ensure his, the boys and our own physical safety. Emmett on the other hand will have a harder time sleeping then usual (which is already bad) and he will begin lashing out and physically attacking Lizze, Elliott and Gavin. Elliott gets stressed out and his anxiety goes through the roof. He won’t sleep or eat and has nightmares.

Now keep in mind all the above situations have already happened and some on multiple occasions, especially with Gavin. So I have to do everything in my power to create and preserve a static environment. Something to also keep in mind is that I haven’t had a restful nights sleep in probably about 8 years. It started with Gavin’s night terrors when he was about 3 years old. Over the years it’s just gotten worse.

I have to manage these situations the very best way I know how and that’s just kind of hunker down and try to survive. I switch into “survival” mode and EVERYTHING and EVERYONE not living in my house is pushed to the back burner. It’s literally a matter of survival. I have little or no energy by this point and can only worry about the ABSOLUTE bare minimum required in order to survive. Honestly, the only goal I have at that point is keeping the kids from drowning. It’s by far the lowest point in my life and sometimes it can last for quiet a while. Once the kids stabilize we can slowly start taking on more and more. Often times it will be a “1 step forward, 2 steps back” kind of thing.

This is when people in our lives disappear. They truly have no idea what we are going through because they don’t have the same type of problems. Many people, both friends and family begin to take things personally. They assume because a phone call isn’t answered or I can’t go hang out that it’s personal. Eventually the calls and invites stop and I have once again lost more of what little I have. No matter how many times I try to explain what is going on, people just don’t get it. I don’t have the time or energy to spend on people that can’t see outside of their own needs long enough to see how much my family is struggling. Don’t you think I would like to get out? Don’t you think I would love and desperately need a break? Of course I would but I don’t have any of those “fancy” luxuries anymore. I’m a special needs parent and my children HAVE to come first. That often times means giving up all of my needs and wants. I’ll be very honest and upfront with everyone reading this (and I truly mean no disrespect). Preserving my children and EXTREMELY fragile family is my absolute TOP priority. EVERYONE and EVERYTHING else will take a back burner to them every single time. If you can’t or are unwilling to accept that, I understand and honestly wouldn’t blame you. If that’s the case, it’s probably best that you cut your losses and move on with your life because my life will ALWAYS be this way….

 

Posted via midNIGHT powered EVO killing Epic 4G by lost and tired

9 comments

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  1. (my kids can learn from a "bad" teacher however the effects would not be as tramatic or hard to "undo" whereas with your boys it could unravel the tapestry hiding the duct tape and gorilla glue)

  2. Rob, no thanks needed! 🙂 (please tell LIZZE I will attempt to catch up w her tomorrow)

    Marc….perhaps we need to find the "Erin brockovich" of the Auspie community?? 😉 good luck!! Your kids deserve the same chance at a good education as mine – moreso really with a need for qualified and GOOD teachers. Your boys (you too Rob) are lucky to have dads like you two.

  3. School is kinda up in the air………they are trying to tell us that since they timed the route at approx 33 to 35 mins that by law they don't have to transport marc to Summit Academy.I have been trying to find out the actual liability of the schools as they pertain to "special needs" kids but finding stuff in writing is a joke. They say the ohio law is 30 mins or less from home school to new school is the guide they go by. I say thats a crock and am so tired of fighting these guys all the time, Deb and i could scream.If you want to mess with me, i don't really care anymore, but when it comes to the lil mans education, i get a little salty.So, we are in the process of finding out about another option we just heard about and we are talking to some people from our SSA and Deb Bates to see what recourse we have.To tell you the truth, if i could find legal representation i could afford, i would actually think about going after the school system after all the stress they have caused this family. So right now we are in the hurry up and wait mode……….

  4. Once again i have to say that i couldn't of hit the nail on the head like you just did Rob……Of all the things i've read that you've posted, this right here is what it comes down to in the nut shell. Life for people in the special needs category is a place that not many people will take the time to enter, for the obvious reasons, and/or the ignorant reasons, but truth be told, there isn't a whole lot that i feel i have to offer when every minute seems to be planned out as to keep things running smooth………ITS JUST NOT WORTH IT TO ROCK THE BOAT!! Managing the stress levels of the family have to come 1st, and sadly, if people don't get it…………see yaaaaa . David, you sound like one of the good guys, please keep posting.

    1. Marc meet David. David meet Marc. David is a good friend of mine from the Android community. Marc is a good friend of mine and the father locally.. I guess. LOL. Anyway, Marc your right…again. It simply comes down to self preservation and as David said, you have to manage the stress in whatever way you can in order to literally stay alive.

      Thanks guys…

      Marc, whats the word on school

  5. Rob,
    I wish I had easy and quick answers for you. I don't except to say I believe we serve a God who loves us and doesn't give us more than we can handle. If i might give a bit of advice, don't eat yourself up from the inside out or you'll wind up like me, in the hospital with a heart attack. At that point I realized Sandi had no one but me. If I'm not here she's alone and won't survive. I started turning lose the internal struggle to make everything work. I now do the best I can and let it go. As you said, survival takes precedence over everything else. Concentrate on survival and safety. That doesn't make you less of a father and husband. It makes you a great one. The constant care you give and the time you spend with your family is the greatest gift you can give. All the money in the world with no investment of yourself, while perhaps easier, isn't the solution to your situation or mine. I had to learn the hard way. I don't intend to appear "preachy". I just care about your family and know they need you more than anything else. You are a hero to them and many others. Don't lose sight of that. Call on me and Sandi if you need to. Love thru Christ.
    David

    1. David,

      I don't think you sound preachy. You sound experienced… I know you understand and I truly appreciate EVERYTHING you have done. You my friend are an inspiration to me, whether you believe it or not. I admire your strength and courage. I do my best to stay focused but sometimes is to widely spread….

      Thanks again

  6. Well said. And I truly am sorry that so many dont "get" it.

    1. You are one of the few that does. Thank you.

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