Katzenjammer Headache #57
I survived Erik's group session this morning. I came home and immediately devoured a giant plate of nachos, despite it being 10 a.m., and one of Brian's diet Code Red Mountain Dews (sweat of the devil). I'm in a weird place in my head, which is pounding.
I explained to the therapists that Erik was not sick last week but had simply shut down again, albeit to an uncharacteristic degree, while in his class. They took note of that and were more hands on with him, stimulating him accordingly. Once he got into the swing of things and seemed interested in what was going on in the classroom, I went down the hall. I was practically a free woman with my hands on the front door when I noticed another mother I know sitting in the room where they hold the parents' group meeting. I decided it was time to make my presence known in there. It has been months, and I need to stop feeling sorry for myself, nut up, and stop running out the front door. Besides, I had the convenient excuse of going in for just a minute to say hello to this other mother. I found the most uncomfortable, straight backed, made-proudly-in-the-USA-by-the-Amish chair in the room next to this woman. She barely acknowledged my presence, but I stayed anyway. It was like a train wreck I couldn't turn away from. Unfortunately, I was a passenger on this doomed train. There were initially five of us parents in the room, including one obviously good-hearted father who laughed too much, although two other women joined us later with small kids in tow. A therapist whom I don't know came in to join us. She was brisk at first, asking me what I meant about something I was saying to someone in the room when she entered, and she certainly didn't really make me feel very welcome; but she didn't really make me uncomfortable, either. We were in a small, coffee-scented room lined with bookshelves and a nice view of some ponderosa pines outside, their waxy needles glistening in the morning sunshine. The books behind me seemed to be on topics such feeding difficulties, diseases and disorders, and parenting with titles like Parenting for Dummies and Mixed Blessings. Thankfully, I saw no books by Dr. Phil. There was a disabled teddy bear sitting happily in a miniature wheelchair on the shelf above me. The woman sitting in the chair to the left of me talked practically nonstop. From what I could determine, she had at least three children, one of whom was a teenager. At least one of her children had a genetic form of rickets, in which there is a vitamin D deficiency and the bones do not plate. She herself had a brace around the ankle I could see from where I was sitting. The therapist began talking about giving children choices and modifying behaviors, providing us with a handout on the subject. A lot of it was common sense, but I find that I am so steeped in Erik's special needs that sometimes it is nice to be reminded about the "normal" things we might need to deal with eventually. In a thinly-veiled, abrasive attempt to get me to participate in the conversation, she looked directly at me at one point and asked if I gave Erik choices throughout the day. I stated that Erik hasn't had an opinion on anything at all until this point but that I would incorporate this more as he became interested. That was the extent of what I said during the session. I don't think I will be opening up to this woman anytime soon. There was an exhausted young mother of two there with a daughter who wouldn't sleep. She very confidently and unapologetically asked Brenda, a parent advocate who came to join us toward the end, if she could get her kids more diapers, as they were out of money. Brenda is a very friendly, outgoing woman who seems great at connecting with people and getting parents what they need in terms of services and such. She handled the situation beautifully. When everything was breaking up and we were standing up to leave, we got on the subject of books on kids. When I told Brenda I had not cracked the What to Expect book on toddlers, she very quickly advised me not to. A couple other mothers in the room agreed that books were generally too depressing. I felt pretty good about that little jolt of validation and understanding. I think I like Brenda. She remembered Erik's name, too. Big points for Brenda.
It was a long 1-1/2 hours, and I felt exhausted afterwards because it was pretty depressing, but I feel comfortable enough to go back once in a while, if not every week. I found the other parents somewhat annoying but fascinating with some potentially endearing qualities as I listened to them. It is nice to know we are all struggling. In a lot of ways, I am thankful for the diagnosis of Williams syndrome. It is obvious I am not fighting the same battle as the other parents in that room, but I still related to them here and there. It could be worse.
I explained to the therapists that Erik was not sick last week but had simply shut down again, albeit to an uncharacteristic degree, while in his class. They took note of that and were more hands on with him, stimulating him accordingly. Once he got into the swing of things and seemed interested in what was going on in the classroom, I went down the hall. I was practically a free woman with my hands on the front door when I noticed another mother I know sitting in the room where they hold the parents' group meeting. I decided it was time to make my presence known in there. It has been months, and I need to stop feeling sorry for myself, nut up, and stop running out the front door. Besides, I had the convenient excuse of going in for just a minute to say hello to this other mother. I found the most uncomfortable, straight backed, made-proudly-in-the-USA-by-the-Amish chair in the room next to this woman. She barely acknowledged my presence, but I stayed anyway. It was like a train wreck I couldn't turn away from. Unfortunately, I was a passenger on this doomed train. There were initially five of us parents in the room, including one obviously good-hearted father who laughed too much, although two other women joined us later with small kids in tow. A therapist whom I don't know came in to join us. She was brisk at first, asking me what I meant about something I was saying to someone in the room when she entered, and she certainly didn't really make me feel very welcome; but she didn't really make me uncomfortable, either. We were in a small, coffee-scented room lined with bookshelves and a nice view of some ponderosa pines outside, their waxy needles glistening in the morning sunshine. The books behind me seemed to be on topics such feeding difficulties, diseases and disorders, and parenting with titles like Parenting for Dummies and Mixed Blessings. Thankfully, I saw no books by Dr. Phil. There was a disabled teddy bear sitting happily in a miniature wheelchair on the shelf above me. The woman sitting in the chair to the left of me talked practically nonstop. From what I could determine, she had at least three children, one of whom was a teenager. At least one of her children had a genetic form of rickets, in which there is a vitamin D deficiency and the bones do not plate. She herself had a brace around the ankle I could see from where I was sitting. The therapist began talking about giving children choices and modifying behaviors, providing us with a handout on the subject. A lot of it was common sense, but I find that I am so steeped in Erik's special needs that sometimes it is nice to be reminded about the "normal" things we might need to deal with eventually. In a thinly-veiled, abrasive attempt to get me to participate in the conversation, she looked directly at me at one point and asked if I gave Erik choices throughout the day. I stated that Erik hasn't had an opinion on anything at all until this point but that I would incorporate this more as he became interested. That was the extent of what I said during the session. I don't think I will be opening up to this woman anytime soon. There was an exhausted young mother of two there with a daughter who wouldn't sleep. She very confidently and unapologetically asked Brenda, a parent advocate who came to join us toward the end, if she could get her kids more diapers, as they were out of money. Brenda is a very friendly, outgoing woman who seems great at connecting with people and getting parents what they need in terms of services and such. She handled the situation beautifully. When everything was breaking up and we were standing up to leave, we got on the subject of books on kids. When I told Brenda I had not cracked the What to Expect book on toddlers, she very quickly advised me not to. A couple other mothers in the room agreed that books were generally too depressing. I felt pretty good about that little jolt of validation and understanding. I think I like Brenda. She remembered Erik's name, too. Big points for Brenda.
It was a long 1-1/2 hours, and I felt exhausted afterwards because it was pretty depressing, but I feel comfortable enough to go back once in a while, if not every week. I found the other parents somewhat annoying but fascinating with some potentially endearing qualities as I listened to them. It is nice to know we are all struggling. In a lot of ways, I am thankful for the diagnosis of Williams syndrome. It is obvious I am not fighting the same battle as the other parents in that room, but I still related to them here and there. It could be worse.
5 Comments:
It doesn't sound like you really got anything out of this adult group session... is it worth it to spend your time there? You are so not in the same place you were at a few months back - I don't want to see these people bring you down!
If you feel it is worthwhile, go and I hope you gain something from it. :) Love -K
As Kerry said, I don't want to see these peolpe bring you down.... It can be quite depressing being with other people, who has nontypical children!!! This can sperate you form the normal world, but this is only my opinion, as you see my blog I always return to this topic :) ha-ha
Do I give Szabi choices throughout the day? I think no... But from now on I try to :))))
I hope Brenda'll get more good points, she can be really nice.
Love, Kati
I have been to a session like this. Except mine was a weekend long session. Filled with all the things the government ISN'T doing to help special needs children. On and on.
To say the least, I have had my fill for a while. Maybe even a year or more. HA!
LOVE YOU GIRL!
I think it is great you went to the parent meeting. Your discriptive writing made me feel like I was right there with you in a sucky chair...Nice to know we are not alone and that it could be worse. One thing that always seems to get me through is the though it could be much worse.
;)xo
Awww, Nance, you did it! But personally, as much as I wanted to push you to doing this, grocery shopping sounds much more fun(:
I am starting to learn to give Av choices. I love it, it is cool to see her opinion. "WHich book do you want to read?" Which cereal do you want?" "This one or this one?" And she pauses, thinks, and will reach her little hand out to pat her choice.
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