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, 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!
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.
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 kling-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 because frankly I’m so tired right now I don’t even know my own name!
2. 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 melt downs, scream, get into fights, have tantrums, go through stages. 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, and I want to kill myself” all because I said no kids could come in and play. Then five minutes later 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, and frankly in my world I have no patience for that right now.
3. 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 children. 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 try a million and it’s not registering. Each day is a new day. I never know up from down, and you telling me how to raise my kid or that he’s spoiled is not helping.
4. 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, bipolar disorder are 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 days go by, and I realize 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?