What’s it like to be a special needs parent?


If there was one thing I wish I could make the world understand about special needs parenting, it would be the amount of stress that comes along with it. 

Don’t get me wrong, there are plenty of amazing things as well.

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However, the thing that most people just can’t seem to wrap their heads around the extreme levels of stress that special needs parents have to function under.

I can say beyond a shadow of a doubt that special needs parenting is far and away the most difficult thing I have ever faced.  I used to be a firefighter/paramedic and the stress I faced in that job pales in comparison to what I feel each day of my life as a special needs parent.

Please don’t mistake this as a reflection  of my kids because it’s not meant to be….

It’s just that special needs parenting is a constant.

I’m constantly on the go. 

I’m constantly worried about my boys and their future.

I’m constantly dealing with behavioral issues. 

I’m constantly worried about chronic and acute health issues.

I’m constantly fighting for services that my kids desperately need.

I’m constantly going on little or no sleep.

I’m constantly putting both my needs and those of my wife aside for those of our kids.

I’m constantly bouncing from crisis to crisis.

I’m constantly feeling overwhelmed and frustrated.

I could go on forever and this doesn’t even include all the things that the rest of the world deals with that we face as well.

Unless you are doing or experiencing this to at least some degree, you probably can’t understand what it’s like to be a special needs parent.

My hope is that by reading this, you have at least a little better understanding of what it’s like to walk in my shoes.

What would you want the world to know about special needs parenting and why?


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mamainfante

I just found your blog.  I too have 3 with autism.  2 girls and a boy.  They are all over the spectrum from what many would see as a gift to almost non verbal.  She can speak words and we’ve taught sign language; but free thoughts unless they are about what food she wants are not forthcoming.  I think you hit the nail on the head.  The constant part.  It is constant.  Every once in a while my husband and I will get very frustrated, it is usually when we actually want to do something for ourselves, like read a book… I’m not talking going out with friends.  It doesn’t last long, because it can’t.  They come first.  Period.    It is a long road.  I think it is worth it.  I am lost and tired too.  My husband and I worry about what their future is too.   I live life like this, I am in the pushing stage.  I am going to push and push these kids up the big hill for as long as I can.  I will worry about how far we get when I get there.  Right now, it is my job to push.  I once had a teacher tell me, ” some kids just don’t talk”.  After that, I had no use for her.  Some kids don’t.  But, some kids do, and I am going to keep pushing.  Think of me.  I have yet another IEP meeting this week.   Thanks for the blog.  It is real.  I really love my kids and wouldn’t change my life, but I am lost and tired too.

lostandtired

mamainfante you are in our thoughts and prayers this week. Best of luck and keep up the good fight. 🙂

lostandtired

@Jim Smeth no worries 🙂

Jim Smeth

Man, i thought my parents had it bad when they were trying to find a special needs school so we could avoid putting my sister in the public school system that does NOT treat SN kids right. (Im looking at you, Montgomery County Maryland). My sister really isnt actually that bad. But you have three kids with Autism. Not just mentally disaled, but Autistic. You have so many more needs and things to watch out for. Ill tell you, you’re doing a better job than anyone else of us would. (My apologies to anyone who took offense to the way ive written this)

hudginsvicky

Guilt. That’s my thing at the moment. According to news reports this week, researchers have discovered a link between several different types of mental illnesses. Wouldn’t you know that autism, bipolar illness, and ADHD are all linked together? And three of my four children each have one of those conditions. My youngest has a different father than the older two, and he has autism. The common denominator in all this is me. 
 
This isn’t the first time I’ve read scientific reports that focus on genetics and the influences thereof. I usually take it with a grain of salt, but this hit too close to home. Every breath I take is for my children. No one seems to get that. So many people judge you and so few are willing to lend a hand, or even support you emotionally. I really didn’t need another heaping spoonful of guilt.

lostandtired

@hudginsvickyHey everyone. 🙂 I wanted to once again thank k you all for your love and support. Awesome feedback on this post as well. @hudginsvicky you are so right. I can’t believe I forgot to mention guilt. Guilt is o e of the biggest things I struggle with anymore.
I’m sorry I’m not responding to each comment but it’s been a really bad day and I honestly don’t have it for that right now. Perhaps later. 😉

TrishMorrin

I do understand fully..

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