It was a mild winter but we were still inside for many months. Tom just isn't used to playing outside anymore so we are re-exposing him to outdoor play. He is fine at the park but at home he has much less tolerance for outdoor play. He is OK for about twenty minutes and then he sits down and signs "finished."
I think it's important to encourage him to get outside and get dirty. He needs to explore all the sensations the outside world can offer him. When we are outside I try to describe many of the things we are experiencing:
- Doesn't the warm sun feel nice on your back?
- The wind is strong today. Do you feel it blowing on your face?
- This bench needs to be painted. Do you feel how the paint is flaking off and rough?
I wish he was better at letting me take him for walks but he just doesn't like to sit in a stroller for very long. He wants to be in on the action!
Tomorrow we have Orientation and Mobility (O&M) training at the mall. I can't wait to see how he does. He is much less affected by the crowds and people at the mall. Even when the mall isn't very busy there are still a lot of sounds coming at him from all directions. That is a lot to process for a blind child but he is really learning to handle all the noise.
As soon as the weather is nice enough on O&M day we will have therapy at the park. I plan to have some physical therapy sessions there also. It's a great place to practice climbing which is a new interest of Tom's. He loves climbing onto the couch and climbing up people!
Remember that you can and should ask your therapists to add real world activities to your child's therapy goals. Tom gets a lot of practice walking up and down the stairs and taking his shoes off during therapy sessions. These are skills that help his body (stretching and strengthening) and help him in everyday life. You can have a therapy session at the supermarket or a neighborhood park. There are opportunities everywhere.
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Hi Jessica,
ReplyDeleteI found your blog yesterday through the WonderBaby Blog. My son Marck will be two at the end of April. He has Peter's Anomaly and like your son, has endured many surgeries to give him some sight. He's had corneal transplants in both eyes, lens extraction in the right, glaucoma treatment, and then finally enucleation of the right eye when his glaucoma got out of control. He also has had other medical complexities that have impacted his development. All of his surgeries happened in his first year of life. He now has good light perception in his left eye (unfortunately, his left eye rejected the transplant). We're weighing the decision of trying a second corneal transplant in that eye.
Given all of that, I often feel overwhelmed with providing Marck with an environment that is engaging and uniquely educational for him. He does receive TVI services once per week and was recently evaluated for speech. I read everything, try everything, and still feel I should be doing more. I've really appreciated reading through your posts (I've read many since yesterday) and seeing the similarities of your daily living. I've already learned much from your experience and wanted to thank you for sharing so openly.
May I ask how Tom does with night time sleeping? Marck really struggles with remaining on any schedule and sleeping through the night. I've read a lot about circadian rhythm, light box therapy, etc. but we still haven't gotten a handle on getting him to regularly sleep through the night.
- Melissa
Hi Melissa: check out the great sleep experiment (1&2) posts from January 2012 for more info about sleep. Tom has never been a good sleeper but since starting him on Melatonin he is actually sleeping! (And so am I!)
DeleteI was just given the link to your blog by a friend. We just found out our 5.5 month old is blind. We are still in shock and feel so lost. I am afraid we are not going to know how to help her learn to walk, crawl, and do other things other kids do. Thanks for sharing your story.
ReplyDeleteIts so hard when you are just learning about your child's diagnosis. But you will find that your daughter is more like other kids than she is different. She might take a little longer to do some things but she also might be right on target with others. You just never know!
DeleteHave high expectations for her and give her lots of opportunities to experience sounds and textures. Even if it seems like she is not interested she is probable thinking and processing all that is going on around her. Often people mistake the quiet stillness that blind babies show as disinterest when they are actually being quiet because they are listening paying close attention.
It has been so great for us to get outside too. I have realized that Elsa has gotten so comfortable with our house that she is intrigued with all of the stuff to explore in the big wide world. It has also been good for mama to get a good dose of fresh air and exercise. Although she has quite a bit of vision, it has been our outside adventures that has clued me in to how much her depth perception is off. Exposure to different places seems to be the best way to develop skills for her to make up for this. She too is uncomfortable in the stroller and she fights like crazy in the car seat. To Creations by mommy: My heart goes out to you too. I wish there was a way to just take comfort in the moment. I feel like i missed so much of Elsa's early days fretting about her future. Day by day she grew and developed and has grown into a strong and independent two year old. Somedays it hurts, but more and more it becomes ordinary and many days I forget that there is even a difference from any other kids. The best thing we have done is to get early intervention services. They come once a week and it has comforted me to have others watching to make sure Elsa doesn't miss out on milestones. Also connecting with other families online has helped me to see that my emotions are normal and that Elsa will be ok. Blessings to you and your family. xoxoxoxo
ReplyDeleteholly
Looks like the comment box is working! ;) Keep on blogging. It's so nice to have perspective, experience on our little kids and how we can get so much more to enrich their childhood.
ReplyDeleteThanks. I love the updates on your little man. He looks like he is doing so great!
DeleteThanks for sharing. I just applied to get into an O&M certification program, and I am crossing my fingers because I would love to add an O&M certification to my TVI license. Where is Tom's COMS located? Since I am in Eastern Ohio, I may have to cross over into PA to get some of my observation hours.
ReplyDeleteWhat do you mean by COMS?
DeleteCertified Orientation and Mobility Specialist
DeleteHis TVI is also an O&M. He is our vision therapist through Achieva, our early intervention provider.
DeletePeanut LOVED his O&M session at the mall! It was fun trailing behind him and his therapy team as they wandered up and down escalators, hallways and checked out different stores. I hope Thomas has a great time, too (there's so much fun stuff to do there!).
ReplyDeleteLove the photos with the puddles!! Have you tried a sand box or water table? Peanut is in love with both of his. Even when he hated getting in the water for baths, he loved playing with the water table--I think it was a fun tactile/noise toy for him. We got ours for about $30 at Target. The sandbox has taken a bit longer--but now he'll actually climb in it to play! I can even get him to play with both wet and dry sand. I think I have Bob the Builder and some excellent bulldozer/machine toys to thank for this--but I'll take it!
The people at the mall were so cool today. Of course, everyone was staring but several people offered him encouragement and everyone smiled at him. No one said, "oh that poor blind boy." It was amazing.
DeleteI am planning on getting him a water table soon. He has contacts so I am still unsure about the sand tables. We will see.