What defines me?

Cancer , A Dozen Kids , Life, Struggle

I have 4 children with special needs. Each with very unique needs of their own. Paytyn is the child with the most struggles. He can’t sit still for any reason. No matter how interested he is in the task laid out before him he can’t stay focused for long. Mere moments is all you get with his attention. He can’t control any emotions at all. His mind takes him from 0 to 1000 in a matter of secs without any time to process his thoughts or control his reactions. He blurts out words that are simply hurtful. I think I have my heart crushed on the daily by the boy who holds my heart.
He is verbal and very much so. He speaks a mile a minute changing from one topic to another before you have grasped what the first topic even was. He doesn’t have 7 year old conversations they are far more advanced. He has been advanced in communication since the moment he begun to speak. He has no filter though. He isn’t able to understand the concept of restraint. Hurting your feelings and being completely unaware he has.
Controlling his emotions being such a challenge leaves his temper high. He has caused physical harm to all of his siblings at one time or another. He is remorseful at times and then at others can’t see past the thing that made him feel wronged to inflict the harm. This has left him with no friends. He tries to go along with his brother and his friends always to be left out. His brother is desperate to get away and be with his friends alone. Who wants their little bully brother hanging around picking on them and their friends.

All this left me sheltering him. Paytyn and mom all day everyday. I took him to work with me when I could. If I was unable to take him he was only left with a grandparent. I would leave during times he would sleep. Which was easy since he slept during the day when he did sleep. He is known for going days without sleeping at all. I made sure that I left him with all the things he needed to get through the day. Like buying some new movie or a new train. He had a huge train set before our move.
I never took Paytyn anywhere I didn't have to. Taking him to the store was a sure bet for a melt down. So I refrained from doing it. Taking him to dinner where he would need to be patient waiting for the food to cook I did not do. I took him out of every situation that would be difficult and I avoided it. I catered to what was the easiest for him. I kept my house dark. The light sometimes bothered him. I would rearrange my life to tailor to his needs. He never really had asked much to go with to be honest. He doesn't like the noise and the lights and the activity around him. So I just took those factors away.
Last night while laying with Marc discussing bday options he makes some comments of the boys never being able to survive life. That they needed some classes to learn to sit. To conform to societies rules. To work they needed to focus. To be product members there are tools they don't have. My heart sank. What a terrible mom I am. Am I setting up my son for failure now? I mean he hadn't been in a store more then 5 times in probably the entire year. How will he know to shop for is groceries? How will he overcome his obstacles avoiding them? I truly thought I was protecting him now I wonder if I have sabotaged him.
I will admit since Marc and I being together I have taken Paytyn to do far more. I take him to the store a bit more because he always would like to come to Marc's and I tend to stop there on the way. Truthfully I dread it each time he is with me. I don't know what his melt down may be. I hate the stares and judgments that I know are being passed.
I took him with today to Martin's I had a small list and wouldn't be in the store long. I prepped him with a talk of how we would hurry and get the list and be out and heading to Marc's. I told him he could pick out a doughnut for our breakfast snack if he would like too. We are half done with the list before a melt down. Standing at the cheese isle Paytyn demands the cheese his sister Klowey always buys. He needs the cheese klowey buys. Except no one knows what that is. We are guessing and suggesting what this cheese could possibly be. We are getting it wrong and his anger and frustration is growing quickly. "I just want the DAMN CHEESE", my son is currently screaming in the grocery store. People turn to look at the mom who is allowing her son to talk this way. Then he goes on a rampage. I want that fucking cheese, how can you not know what cheese, the damn cheese she buys all the fucking time. Now here I am do I discipline the behavior you know he has no idea how to control? Do I ignore it and help him find the cheese? I come to his level, telling him we can't figure it out mad lets think. I ask more questions about the cheese. I can see he feels stressed not being able to communicate what he is wanting. I figure out somehow that it is cottage cheese. YES! He just lets out this huge breath of relief like he felt the weight of the world lifted. Instantly he is calmed and asking politely to buy and find it. The grandma in the cheese isle with us. Is disgusted I am rewarding his cursing. Soap is what that brat deserves I hear her murmur. My heart hurts hearing her. I quickly exit the store. Not even bothering with the side dish I was hoping to find. I just want to be free from the judgement.
I am my biggest judge of course. I say I fear taking him in public because of the reactions of others. How others treat me and look at me as a parent. Truthfully I treat myself far worse. I am absolutely clueless if I am doing right by my son in my style or choice of parenting. I want the best for him and him to have the most fulfilling productive life he can have but I am not sure that I am setting him on that path. I feel alone completely even with Marc at my side. He wants me to help him understand things I simply don't myself. I have spent the last few years pretty closed up with the kids. I haven't got ideas to how to get them able to sit for hours or how to get through school. OR sitting to watch planes. I can't fathom how to make the world fit their needs or how to make their needs fit in the world. It's new daily. I am not sure that Paytyn's needs are even defined yet. Being a mommy of special needs kids is hard.


7 thoughts on “Life of a Mom of Special Needs Child

  1. You are such a strong mom, and I am so sure that you are a wonderful mom through your child’s eye. I love this post! 🙂

    1. daniellemomof8gmailcom says:

      Awe thank you for the sweet words and I am so glad you enjoyed

  2. You have a great blog. Would you like to share your story on “What You Blog About”
    what motivated you to start this blog ?

    1. daniellemomof8gmailcom says:

      I would absolutely love too!

      1. Thank you so much, Ms. Danielle. May I ask you to fill out the form to submit your story on http://www.whatyoublogabout.com/contact

      2. daniellemomof8gmailcom says:

        Thank you I have submitted.

  3. Mayra says:

    You are a wonderful mom. I can understand at some level. I have worked with special need children at the severe end of the spectrum and it is difficult. I’m sure it is much more difficult for parents since there are more things you need to worry about. Just stay strong, ask for help when you need it and remember to get some time to rest. Great post, hope to read more in the future!

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