What Special Needs Parents Want You To Know

Most days I can handle things. In fact most days, despite having bipolar disorder, I can even spend the day smiling. But some days are more of a battle. Some days I want to scream at my friends. I want to scream at my family. I want to scream at the people who mean the most to me, those who are suppose to support and understand but don’t. Some days I want to hide under a rock and just tell them – stop asking, expecting, telling, thinking I’m making excuses and just READ MY BLOG!

As a special needs mom and caregiver to not only one child with disabilities but a husband with disabilities as well. I can tell you that some days I’m just plain ready to give up.

It’s not that I don’t love you all. It’s not that I don’t care. I’m just tired of explaining myself. Explaining away the bad behavior of the ones I love, and expecting ALL OF YOU to actually understand without more knowledge. It’s not right.

So, here are some things special needs parents want you know but maybe don’t always share. I’m sharing because I think it’s time we talk more, share more and show more understanding for one another.  So here we go.

1. I’m not ignoring you — I know you think I am. I know you were expecting a phone call, or to have coffee with me. I am always late, or just don’t show up. You feel like we never get together anymore. And if we do, I know how you feel because you praise me for my efforts, which honestly sometimes makes me feel even worse for being a bad friend.

But each day for me is the grueling task I take on just to survive. I want to be with you. I want to have coffee. I want to go out without a cling-on attached to my side screaming. So, if you give up on me I totally understand. But honestly don’t expect me to care either. Frankly, I’m so tired right now that I don’t even know my own name!

2. Stop telling me my kid is normal — Stop telling me my kid is normal — I get it, you are trying to help. But honestly, you are failing and only pissing me off. Our kids are not the same!  Yes, all kids have meltdowns, scream, get into fights, have tantrums, and go through stages.

The difference is that in our house tantrums and meltdowns happen daily. I have been screamed at, sworn at, bitten, scratched, kicked, and punched. I have been told — I hate you. Go to hell. Screw off. I want to kill myself. I want to kill you! You don’t love me. All because I said no kids could come inside the house to play.

Then five minutes later, I got hugged and told I was the best mom in the world. Stop comparing because it’s not the same.  I am happy you are trying to understand, but all it ends up doing is making me feel as though you really don’t understand. Frankly, in my world, I have no patience for that right now.

3. My child is not Spoiled! — My child is not spoiled! — I realize you may come from a generation where parents hit first and ask questions later. But that is not how I am raising my child.

My child is not spoiled, he is confused.  Confused about boundaries, confused about jokes, confused about me leaving, confused about his feelings. Hitting him or laying the “hammer down”  isn’t going to solve these problems. And I do feel discipline is important, but it has to be geared for my child.  

Most kids you can tell them once or five times not to do something and they get it. In our house, we say things a million times and it’s still not registering. Each day is a new day.

I never know up from down, and you tell me how to raise my kid or that he’s spoiled is not helping.

4. Sometimes I just want to be left alone — Sometimes I just want to be left alone — Not because of you or anything you’ve done. I just want to hide from all this, and that is okay. Please understand, I don’t need you to fix things. You can’t. Just understand that I still cry about this.

Words like Sensory Processing Disorder, Cerebral Palsy, and Bipolar Disorder are now a part of my daily vocabulary. I am constantly learning. I am constantly trying to do better. I still feel bad for what isn’t and what I’ve lost.

I am doing my best to figure this all out as each day goes by. I realize that hiding isn’t helping, but I need to just be left alone with my thoughts and feelings. So don’t take it personally.

5. I’m Done Explaining To You — I love you and honestly need you right now. I need your love, understanding, and support. But I am done explaining why my child acts the way he does. I already feel like a failure, each day I live and breathe, and I don’t need you to keep telling me how to do it “better”.

I’m done explaining why I parent the way I do. I’m done explaining why I bring him places or have to go somewhere and can’t leave him behind so I can just hang out.

Even with all the help in the world, my child may not cooperate the way you want him too, and I’m okay with that. I’m done expecting you to be. You want to know about us and how we deal with things. Read up on it!

6. Without You I wouldn’t Be Here — I don’t say it enough. I know I don’t. But I love you. I need you. The support you show me in trying to help, offering your services, your kindness, your understanding means more to me than you will ever know.

I’m not always great at asking for help, and when it comes along, I’m even worse at accepting and thanking for it. But I’m telling you now I could not do any of this without your love.

7.  My life is amazingly blessed with love & heartache — I know everyone’s life is, but I truly feel this way. I am so blessed because I have my child in my life. It’s not what I asked for. It’s not what I wanted. My dreams for him vanished the moment we heard the word disabilities and were replaced with new dreams, each day challenging but always forgiving. I may not know what’s around the corner, but I’m doing the best I can.

And although I feel sadness, heartache, and pain. I also feel joy, love, and wonder unlike anything before. So don’t feel sorry for me because I don’t want your pity, just your support.

Do you have a child with special needs? What do you find the most challenging?



  1. Nancy @ Whispered Inspirations February 18, 2014 at 10:26 am

    I don’t have a child with special needs but, I appreciate that you help us learn more about it through your posts. 🙂

    1. Jodi - Site Author February 18, 2014 at 10:32 am

      Thanks Nancy! 🙂

  2. Jenn February 17, 2014 at 6:33 pm

    Your blog is an amazing read to understand the life of a parent dealing with disabilities. Its hard being on the outside and not understanding how one feels to be on the inside! Your post did a great job of opening the door a little to give us a sneek peek!

    1. Jodi - Site Author February 17, 2014 at 11:46 pm

      Thanks so much Jenn, I appreciate the comments. It’s important to me to bring more awareness not just for special needs parents, but the disorders themselves so that more people are aware kids suffer from these things.

  3. Jenna Em February 17, 2014 at 11:09 am

    Thanks for writing this, Jodi. You are right that many people don’t “get” it, but it does help one understand better when reading it. My best friend in high school was/is bipolar, and it was hard for me to see her that way (because I knew her before her condition was so evident).

  4. Randa @ TBK February 17, 2014 at 9:04 am

    I don’t think you should feel like you have to explain yourself to anyone but I’m happy you wrote this post. Not only does it let you express how you feel but helps other understand, better. Thank you for sharing your thoughts and feelings Jodi.

    1. Jodi - Site Author February 17, 2014 at 9:10 am

      Thanks Randa I feel the same. I shouldn’t have to explain, but honestly without knowledge it’s hard for someone to understand how I’m feeling, how other special needs parents feel. It’s like we belong to a club but don’t see each other ever lol 🙂

  5. Angie@Echoes of Laughter February 17, 2014 at 8:51 am

    This is so very well articulated Jodi and thank you so much for explaining the frustration and pain that you feel everyday. I have a few friends with special needs children and you have really given me a lot to think about in how they must be spending their day and I how I could do better to support them! Have a great week and don’t forget to love yourself too!

    1. Jodi - Site Author February 17, 2014 at 9:11 am

      Thanks so much Angie. Oh I know it’s the hardest thing, taking care of me, I’m so used to doing everything else for everyone else. I appreciate your comments, hope you have a great week with your family hun 🙂

  6. Danny February 17, 2014 at 5:41 am

    Christians a 7 year old boy diagnosed ( so they think) ADHD , general anxiety, intermittent explosive disorder
    And talk about rage and fight with his younger brother.
    Everyday is a chore ( we have 3 boys ) and no family in the city we live in!!
    We get no support , no help, no date nights( last one was a year ago) no therapy for our boy ( we think it’s aspergers)
    The list goes on!!!!!

    1. Jodi - Site Author February 17, 2014 at 8:27 am

      You are not alone Danny, all I can say is hang in there. I can’t say anything else, because honestly what you are going through I have no idea. But you aren’t alone. I know there is no comfort in that, because you probably feel very alone. My boys consistently fight as well, drives me up the wall. Some days I want to give up. But I push on. Support is not easy and services are nil in most communities. Just remember I’m always here if you wanna talk. Reaching out to ask for help or just to blog and talk about it is one of the hardest things ever, but some days you just have to 🙂

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