We have just been away camping. It was a great trip except for Owen's yelling, groaning and grizzling. I know he is loud at home but out in the bush it just seemed so much louder and with other people camping close by, I was really conscious of just how loud he is. I thought I could sense the other people looking our way, wondering what was "wrong" with our baby, or wishing we could make him be quiet, it was one of those times when I felt poignantly aware of his disability. I felt like yelling out to them - He's got Down Syndrome, OK!
I don't know if other kids with DS are like this or not, but Owen seems to get yell/groan alot - its his outlet for tension - like if the dog comes too close, or he doesn't want that piece of cheese, or he has had enough kisses for the day and I think with all the different sensory input in the bush he was more noisy than usual. I found myself at one point looking over at him sitting on the grass in front of the tents yelling and groaning and I thought - , is he going to be doing this when he is 9, 18, 30, 60 ??? it made me cringe and I felt deeply, deeply sad and afraid, afraid of his disability, afraid for the effect on my other boys and afraid for what my life may look like.
Owen was fine if I carried him round on my hip or in the baby carrier and he LOVED all the butterflies and the waterfalls and he was great in the baby backpack on our long hikes, so that was a saving grace and I hope that once he learns to talk and can communicate and we can reason with him that the yelling, groaning and grizzling will become a distant memory, another thing that I worried over unnecessarily.
I don't know if other kids with DS are like this or not, but Owen seems to get yell/groan alot - its his outlet for tension - like if the dog comes too close, or he doesn't want that piece of cheese, or he has had enough kisses for the day and I think with all the different sensory input in the bush he was more noisy than usual. I found myself at one point looking over at him sitting on the grass in front of the tents yelling and groaning and I thought - , is he going to be doing this when he is 9, 18, 30, 60 ??? it made me cringe and I felt deeply, deeply sad and afraid, afraid of his disability, afraid for the effect on my other boys and afraid for what my life may look like.
Owen was fine if I carried him round on my hip or in the baby carrier and he LOVED all the butterflies and the waterfalls and he was great in the baby backpack on our long hikes, so that was a saving grace and I hope that once he learns to talk and can communicate and we can reason with him that the yelling, groaning and grizzling will become a distant memory, another thing that I worried over unnecessarily.
sounds like a great camping trip and very pretty! we have snow!! Maddie talks LOUD and yells and sings LOUD..sometimes I think it is that she cannot hear herself...but her ears always test fine...we work on whispers but it is always followed with a very loud yelp...I get scared to about the future...and I am SO trying to stay in the moment of her being 20 months...I cannot even look forward to 2 years old!! the worst is when you have camping neighbors...my husband always says who cares she is Maddie...she can be as loud as she wants...maybe someday I will get there!! smiles
ReplyDeleteRussell is REALLY loud too...But I think he has to be in our house or he would never be heard!!lol...
ReplyDeleteI still get scared about the future too...At the dinner table last night the kids were all saying what they wanted to be when they got older and Amy said "I wonder what Russell will be"...It made me sad, because I wonder that too, but in a different way than she does...One day at a time I guess, its all we can do. Sending a hug your way!