Hand to Hold's Official Blog: Written by Parents for Parents

Please Play With Me

SmilesMy oldest son is 8 years old. He  is a happy, social boy who loves to be around  people, enjoys attention, music and being active. He is also non-verbal, unable to walk, and has limited communication skills. Despite this, it is very obvious that social interaction is important to him. As an infant and “toddler” people interacted with him fairly easily because expectations for infants and toddlers to respond verbally and physically are relatively low–a smile or cute vocalization will suffice.

As children with severe physical limitations age, people have more difficulty knowing how to interact with them. This has been the case with my son. Even family members who spend a decent amount of time with my son, have begun to limit their interaction with my son to an initial “hello” and a quick hug. This is heartbreaking. For everyone. I will admit that before I had a disabled child, I too felt uncomfortable being around people with disabilities because I had a severe lack of knowledge.

We also have two younger children who have no shame when it comes to attention. They are little and cute, so it is easy to be tempted by their charms. My oldest son sits patiently and waits for his turn. So, what’s a parent to do? After my sadness turned to frustration, I attempted to take the high road and be mindful about how I might be able to help those who love my son be able to show him with their actions. I have a blog I write from my son’s perspective and thought I could use it subtly to let people know how he might be feeling. This is what it said:

Being the big brother of a wild five-year old brother and an adorable three-year old sister can be hard sometimes. It’s difficult not to notice them, and they constantly seek attention from anyone willing. I do admit that I have fun watching them play and listening to them run around the house, but sometimes I am SO over it! I want to play and be noticed too. I think, perhaps, that people might not know how to play with me. It’s difficult to know what to do with someone who cannot walk or talk, but I want you to know that I really love to be around people. So, I’d like to talk about things I like to do and how people can play with me.

1. Greet me. If you could see my face when someone walks into my house, you would see that I get very still, listen intently as they greet my brother and sister, and then wait patiently for them to come to me. Sometimes people forget to say hello. I love it when people do greet me and it makes me feel good.

2. Music. I love music of all kinds, ever since I was a baby. I love to hear people sing to me as much as I love listening to songs on the radio. I really like new pop music the most and have been known to get pretty crazy on the dance floor. Pull up a song on your phone, I will give you my opinion!

3.  Read to me. I really enjoy books. My friends at school read to me every day, and so do my mom and dad. I like all kinds of books, and especially like to snuggle on the couch and read. You can even give me a choice of books and I will tell you which one I prefer, or just choose one yourself.

4. Ask me about school. If you want to see me get excited, just ask how I like school. I may not be able to answer your questions in words, but you will see how excited I am.

5. Tell me about your life. I love hearing stories about anything! Tell me where you have been and where you are going. Show me pictures and videos on your phone and tell me about the people.

6. Take me for a walk. I enjoy going for rides in my chair, and even like a little speed and spinning! Tell me about the things we see and stop to help me investigate something interesting.

7.  Play games. Even if I can’t hold the cards myself, or move the game pieces, I still like to get involved in the action; all I need is someone to be my hands. It may take longer, but I would be so thankful!

Most of the time I sit, patiently waiting, listening to all of the activity going on around me.  I love to be around people and I want them to love being around me. Sometimes it just takes a little creativity to know how to play with me!

Now we only hope that people will feel they are able to make a change when interacting with my son, even if it may be small.

Stephanie Goley About Stephanie Goley

Stephanie Goley (MA) is the mother of three, full-time stay-at-home mom, part-time educator and military spouse. Her oldest child, Kai (6) was born full-term, but experienced birth trauma causing significant brain damage. He spent 17 days in the NICU and is diagnosed with cerebral palsy, dystonia, cortical visual impairment and seizure disorder. He is non-verbal and non-ambulatory, relying on others for all his basic needs. Stephanie is interested in fitness and having fun adventures with her family. She is passionate about creating the best life possible for her son and seeking out alternative therapies to help develop his potential. You can find her on Facebook and her personal blog about Kai, written from his perspective.

Comments

  1. Kaleena BerrymanKaleena Berryman says:

    This touched me to my soul. Thank you for writing this. I will do better because of this.

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