Confessions of a special needs parent…

I thought it might be helpful for me to get a few things off my chest. I carry around enough stress on a daily basis that I don’t need to burden myself with more then I have to. I also want everyone to see what happens to many special needs families like mine. Maybe you can learn something from me and use it to avoid this from happening to you.

Please note I have a very narrow focus for this post. This is not directed at my parents or in-laws.

Confessions of a special needs parent:

I’m angry, hurt, resentful and just plain PISSED OFF… I’m the oldest of 6 kids.and my confession is that I feel we have been abandoned by them.  I have been there for EVERY SINGLE one of them COUNTLESS times throughout their lives. My blog gets 50-60,000 hits a month so far this year. I literally have hundreds and thousands of emails and messages. Do you know how many of them are from my siblings……….ZERO. We are living through something that most people will never experience and fewer would survive my own brothers and sisters pay no attention to us. Lizze just recently have major surgery. Do you know how many phone calls we received from my siblings combined……ONE. I suspect that some didn’t even know she has had surgery. Maybe that’s why they didn’t call to make sure she was okay. How many times do we get a phone call from any of them just checking in to see if we are doing all right…….ZERO. How about even checking in on their nephews…….ZERO. I literally CANNOT remember the last time ANYONE made ANY effort to spend time with one of my kids. Do you know how much that hurts? Elliott doesn’t even remember some of their names and that just kills me. Recently a few of them traveled across several STATES to go visit my sister. If they can find the time to do that, why can’t they find the time to visit us? We live 10 minutes away. No one even returns my phone calls most of the time. Everyone is just to busy with their own lives to worry about us.. I could understand if they didn’t even see each other but they do. I see the Facebook updates and the pictures of parties and tailgates. Maybe our lives are just to complicated for them to handle. All I know is that we are living through extremely challenging times and can use all the help and support we can get. I thought that’s what family was for….maybe I was wrong. I’m sure I will be upsetting some people by writing this but it’s the truth and that’s what matters. I don’t even care anymore because I just have to much on my plate to even attempt to make anyone think that I’m okay with this. I’ve brought it up before and nothing changes. I’m tired of trying to make everyone else feel better. What about how I feel?

It’s gotten to the point where I want to just pick up and move some where far away. Maybe then I could rationalize why no one seems to find the time for us. I could always think to myself that “they would be here for us if we lived closer”. Living just 10 minutes away doesn’t allow for such rationalization. It’s a much harsher reality to know that we just don’t seem to make the cut. Brown’s games and tailgating is more important then being there when your family needs you the most. I’m honestly at a loss as to what else I could say. I’m hurt, angry and I feel abandoned, all things I would never do to them. Maybe my expectations are to high. Maybe it’s unfair of me to expect anyone to want to be a part of our lives. I know it isn’t easy but I would like to think that we are worth the effort. At least my kids would be worth the effort.

Even the Lost and Tired family isn’t immune to this type of loss. I wish I could say that this type of thing rarely occurred but that wouldn’t be true. It happens to families like mine every single day. Our lives are already made challenging enough. Why do we have to lose so much? Why can’t people see that we can still offer something meaningful to their lives?

If you are reading this and you know a family like mine, please don’t let this happen to them. It takes a lot of strength and patience to be there for a special needs family. I promise you that it’s worth it and the impact you can have on their lives simply because you stick by them is immeasurable. Please learn from what has happened to us and countless others. If you know a special needs family pick up the phone and let them hear a friendly voice. Give them someone to vent to. Let them know that they aren’t alone…..

 

-lost and tired

 

5 comments

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  1. I understand where you're coming from, but allow me to offer a different perspective – in hopes that you don't get offended or take it the wrong way.

    I have a large family, and we are in constant communication. My husband has a small family, and we aren't in as much contact with his sister. And the reason is simple – I am completely uncomfortable with her son.

    He doesn't have any special needs – he's just been raised differently than I raise my kids – he is 6 and has access to guns, motor bikes – things I don't want my son to be influenced by.

    Please don't take this as me saying that they have a right to be concerned by Elliot or Emmett – but you've mentioned some "creepy" interests Gavin has had in the past with your wife's breasts and even your own hesitations with him around your other two sons – why wouldn't your brothers or sisters feel the same?

    I'm not saying they shouldn't call to check in or have a relationship – I'm just saying that you have said before that Elliot picks up a lot of things from Gavin – perhaps they don't want their own kids exposed to that behaviour (or worse).

    The sad truth is that as adults we all must make decisions and put the family that we've created ahead of the family that has raised us.

  2. I have felt the same way at times. I am one of 3 siblings and I did move away so I can understand why my family can't find time to see us but I always remember their bdays and send cards and gifts and they never do. I have one child and I am divorced. I remember all of them but they never remember me. I personally think it's because I am more organized. I try not to take it personally but I know that they just can't handle the drama I live with having a child with Aspergers. It's their loss.

    1. That's exactly it. If I can find the time with all I have going on then why can't they? I want my kids to know their family…… Thanks for sharing your story and thoughts….

  3. Rob and Lizze,

    It's not wrong to have expectations of your family. Often I get very offended when my family doesn't help out with mom and her issues. Sometimes I feel so guilty thinking they should give more of themselves. When they do and I see how buisy their lives are I want to go away and hide. Why did I make such noise? Why did I ask them to help? They don't understand. I have to forgive them for they really do not understand. Then down the roller coaster I go and I'm angry again. They are buying plants and shopping and fixing up their homes while I'm by mom's side turning the oxygen and C-pap on for her, wishing so much that she had a comfortable chair to lean back in. But I don't say anything. How can they read my mind. They don't understand and it's too uncomfortable to look. And when they do, it becomes how to do it their way. Forgetting that we had our way. Forgetting that we worked it out. We just need love and support and encouragement. Please trust us and listen, we'll tell you how to help. Family is a complicated union. We know we all love each other. Specifically spell out each new situation, what it is you want them to do. Call and tell a sister you want her to spend such amt. of time this week with Elliot. Make arrangements. They don't understand. Forgive them. You wouldn't of understood if it had not happened to you. I am so sorry about your losses. Because you deserve, from people, sooo much. Your family loves you. It's obvious that you love them.

    1. Thank you Sharon. 🙂

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