Cookie Time
Going to Erik's school on Tuesdays for his class and my parent group affects me quite differently than it did a few weeks ago. I've come a long way, baby! I don't feel like vomiting in the parking lot anymore. I rarely cry on the way home. I am excited to see the children making real progress each week and look forward to seeing them. However, I still feel slightly raw afterwards, and something small and unexpected has the potential to throw me off balance and upset me, but I think that's because many of the feelings I shove down inside me to survive are brought to the surface to talk about with the other members of our group. These feelings remain on the surface for the remainder of my day as I deal with them and put them away, one by one. I'm not sure that will ever change, and I'm okay with that.
It snowed last night and will likely not reach 32 degrees today to melt. Luckily, my Jeep does well in the snow. Erik and I left 30 minutes early to get across town and begin his walk from the car to the school. I'm pathologically early to nearly everything I attend. Tuesdays are all about Erik, and I don't rush him in any way once we get loaded in the car. It is nice that I don't have to rush, either. When we arrived, I set him down on the sidewalk, and he said "WA WA" before he suddenly plunged his big, bare hand into the snow. Boy, was he surprised! He brought his hand back up and studied it intently. There were fluffy clumps of snowflakes stuck to his fingers. I relish watching him discover the world. We then slowly began making our way to the building over the slippery pavement. His pace is quickening every week, but we still had to stop to watch the heavy equipment working a couple lots down. Since Aspen sent Erik a tractor for his birthday, he has been on the lookout for the full-sized ones out in the world. When he saw a grader working, he craned his neck to see its knobby wheels turning in the snow like giant powdered donuts and yelled, "DACTOR!" As it turns out, we arrived in the classroom a full 5 minutes early and had the opportunity to relax to some classical music that was softly playing before the other children arrived.
Our parent group was moderator-less this week due to illness. Even Bev, Erik's therapist, was absent. Brenda, the angel that she is, came in to make us coffee. Group consisted of me and the two other mothers I now know. Another mother came in to join us toward the end of the session. We didn't run out of things to talk about. What I found quite helpful was the fact that Ms. R, the mother dealing with Phelan-McDermid syndrome in her daughter, readily admitted she got emotional during parent group and found it difficult to attend sometimes. What? I'm not the only one? She asked if I attended every week, and I told her that I have given myself permission to skip but that I haven't done so yet. When I remarked at how easy it seemed for the other parents to attend, she reminded me that most of the other parents are playing a different ball game than we are and probably have an easier time with the emotional part of things. In other words, there's a big difference between a developmental delay and a genetic deletion. It's nice to have someone speaking the same language as I do. There doesn't seem to be anybody else in town who can truly understand my thoughts right now. We both explained our respective syndromes to the mother who arrived last, and she seemed to listen intently. Her daughter has ASD NOS (autism spectrum disorder, not otherwise specified). That has to be very difficult. I am thankful what we have is "specified" and shows up on a tidy little test when they paint chromosomes with dye and see a blank space where there should be genes. I know precisely what chromosome is lacking and where the deletion is located on that chromosome. That gives me some comfort. There was a lot of talk about the program here in town for autistic children, and I feel a little weird because although Erik's syndrome is classified as an autism spectrum disorder, he can communicate fairly well, so he doesn't seem to really fit into that program. I'm sure that if he attended, he would get a lot out of it, but the more I hear about it, it doesn't feel right to me like some of the other programs available do. I was excited to learn that Ms. R took her daughter to the therapist in town who works with horses and that they have a swimming pool they use for therapy as well. Her daughter is 20 months and will likely ride the horses when she is old enough at 2 years of age. She gave me the news that one of her relative's sons, who lives in New Zealand and has Williams syndrome, just graduated from college and that she would get more information for me about how and what he is doing. That was very good news.
Now that I am home, I have shoveled the walk and emptied the dishwasher. I sang Erik the "Cookie Song" (formerly the "Binky Song"), gave him graham crackers and some cheese, and put him into bed.
("Cookie Song" -- By Nancy)
It's cookie time!
It's cookie time!
Everybody scream and shout!
It's cookie time!
It's cookie time!
Get your little cookies out!
Hmmm. That's funny. I used to make up a lot more songs when I wasn't getting much sleep. Being rested stunts my creativity a bit, but I'm not complaining.
It snowed last night and will likely not reach 32 degrees today to melt. Luckily, my Jeep does well in the snow. Erik and I left 30 minutes early to get across town and begin his walk from the car to the school. I'm pathologically early to nearly everything I attend. Tuesdays are all about Erik, and I don't rush him in any way once we get loaded in the car. It is nice that I don't have to rush, either. When we arrived, I set him down on the sidewalk, and he said "WA WA" before he suddenly plunged his big, bare hand into the snow. Boy, was he surprised! He brought his hand back up and studied it intently. There were fluffy clumps of snowflakes stuck to his fingers. I relish watching him discover the world. We then slowly began making our way to the building over the slippery pavement. His pace is quickening every week, but we still had to stop to watch the heavy equipment working a couple lots down. Since Aspen sent Erik a tractor for his birthday, he has been on the lookout for the full-sized ones out in the world. When he saw a grader working, he craned his neck to see its knobby wheels turning in the snow like giant powdered donuts and yelled, "DACTOR!" As it turns out, we arrived in the classroom a full 5 minutes early and had the opportunity to relax to some classical music that was softly playing before the other children arrived.
Our parent group was moderator-less this week due to illness. Even Bev, Erik's therapist, was absent. Brenda, the angel that she is, came in to make us coffee. Group consisted of me and the two other mothers I now know. Another mother came in to join us toward the end of the session. We didn't run out of things to talk about. What I found quite helpful was the fact that Ms. R, the mother dealing with Phelan-McDermid syndrome in her daughter, readily admitted she got emotional during parent group and found it difficult to attend sometimes. What? I'm not the only one? She asked if I attended every week, and I told her that I have given myself permission to skip but that I haven't done so yet. When I remarked at how easy it seemed for the other parents to attend, she reminded me that most of the other parents are playing a different ball game than we are and probably have an easier time with the emotional part of things. In other words, there's a big difference between a developmental delay and a genetic deletion. It's nice to have someone speaking the same language as I do. There doesn't seem to be anybody else in town who can truly understand my thoughts right now. We both explained our respective syndromes to the mother who arrived last, and she seemed to listen intently. Her daughter has ASD NOS (autism spectrum disorder, not otherwise specified). That has to be very difficult. I am thankful what we have is "specified" and shows up on a tidy little test when they paint chromosomes with dye and see a blank space where there should be genes. I know precisely what chromosome is lacking and where the deletion is located on that chromosome. That gives me some comfort. There was a lot of talk about the program here in town for autistic children, and I feel a little weird because although Erik's syndrome is classified as an autism spectrum disorder, he can communicate fairly well, so he doesn't seem to really fit into that program. I'm sure that if he attended, he would get a lot out of it, but the more I hear about it, it doesn't feel right to me like some of the other programs available do. I was excited to learn that Ms. R took her daughter to the therapist in town who works with horses and that they have a swimming pool they use for therapy as well. Her daughter is 20 months and will likely ride the horses when she is old enough at 2 years of age. She gave me the news that one of her relative's sons, who lives in New Zealand and has Williams syndrome, just graduated from college and that she would get more information for me about how and what he is doing. That was very good news.
Now that I am home, I have shoveled the walk and emptied the dishwasher. I sang Erik the "Cookie Song" (formerly the "Binky Song"), gave him graham crackers and some cheese, and put him into bed.
("Cookie Song" -- By Nancy)
It's cookie time!
It's cookie time!
Everybody scream and shout!
It's cookie time!
It's cookie time!
Get your little cookies out!
Hmmm. That's funny. I used to make up a lot more songs when I wasn't getting much sleep. Being rested stunts my creativity a bit, but I'm not complaining.
posted by Nancy at 11:46 AM
4 Comments:
DACTOR! I love it! I will also be adopting your cookie song. Maybe if I start singing about food, Daven will be a little more interested.
Glad you made it out and back again safely.
I know that hearing about the college grad had to be very special to you. I hope every day you find something that gives you such hope. Y'all are very blessed to have each other and you're all in my prayers. Thank you for sharing. :)
Did Erik just love the snow!!! 'DACTOR" he is just 100% boy I LOVE IT :)
It is always nice when you can have a random nice chat, and when good news comes from it that is even better...
Be careful driving in that snow lady :)
Snow... wow winter is here! I bet Erik will have fun with that this year. :)
You certainly sound different when you talk about group now... there's a "lightness" in your writing that wasn't there before. I'm glad you are getting comfort from a local person since we are all overthe place! ;)
Love K
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