Lily had surgery to remove her trach on Monday. Though we're not out of the woods yet... She's fighting her sedation meds and has developed a slight fever... The doctors are telling us this is all typical. They'll do a follow up scope on Monday, and if her doctor likes what he sees we'll try to extubate (at which point we'll be taken off the sedation meds, and we've been told, her fever will probably subside).
During snack time at school the kids need to ask for what they want. Everyone was asking for a bib. The sign for bib is just fingerspelling B-I-B. Nate has trouble isolating his pinky to make an 'i'.
His solution to this problem was to sign a "B", point to himself and say "I", and then sign the other B.
I think this is not only funny, but really creative problem solving!
My son had started reading the dictionary every night. He is 8. I explained what the book was when he found it and he's been picking it up every night or the last week, it's amazing to me. Maybe he finds comfort learning from it? Whatever it is, I'm happy and proud of him
In the last two weeks 4/5 days have been "good" or "great" days at school for DS. (After several weeks of reports of disruptive and worse behavior). Of course he went back to having expected behavior pretty much immediately after we signed the form initiating the FBA. Also, the 1/5 days he's not getting good reports haven't been as bad and one of the days was the day after Halloween with an unexpected sub.
Yesterday, his teacher said she thinks we've made it through the worst of it and that it was probably just testing boundaries. It'll be interesting to see what the FBA says when it's complete.
DS can pull out the Kmart toy book, point to the toy he wants and says "I want Mikey for Christmas. Ask Santa."
He wants the Michaelangelo action figure from the Teenage Mutant Ninja Turtles. He has been telling DH and I almost everyday. He told our ABA therapist when she was over one night to work with him.
My DD is eating puree willingly from a spoon. She has eaten from a spoon before, but not bite after bite after bite. Apparently she loves the pureed sweet potatoes I made, probably because I added in sea salt to them and she loves sea salt.
DD1's art teacher saw me in the hall and introduced herself, and said that DD1 is doing really well in her class -- engaged, following directions, and has a good attitude about the times she needs to be redirected.
DD1 told me last week that her favorite "special" (out of PE, art and music) is art, and I passed that along to her teacher as well as the fact that I've seen SO much progress since the start of the year, in what she draws, how she draws, and using lots of colors, staying in the lines -- that drawing and art haven't been something DD1 was interested in, in the past; and in fact drawing was very much a struggle for her to translate an idea to paper. She gave me kind of a funny look and told me that really surprised her.
I love those kind of looks. When people see only what my child can do and is doing and have no idea of the history & just take her as she is and find her sweet and capable and enjoyable. It's a good reminder to me, too, not to just look at what she does through the lens of my anxieties about her social life, future, etc. (God, I'm so type-A.)
We are having a tough week so it's not always easy to see the good - but even while screaming and crying while being "sheet restrained" during the surprise EEG this week, DD was able to communicate that she was "OK" while I and the other tech held her down. I told her it is OK to cry as much as she wanted during the lead placing process but she kept saying "yes" to "but you are OK right?"
Also, she is the puzzle master - thinking of going for the M&D U.S Map puzzle for Christmas.
We are having a tough week so it's not always easy to see the good - but even while screaming and crying while being "sheet restrained" during the surprise EEG this week, DD was able to communicate that she was "OK" while I and the other tech held her down. I told her it is OK to cry as much as she wanted during the lead placing process but she kept saying "yes" to "but you are OK right?"
Also, she is the puzzle master - thinking of going for the M&D U.S Map puzzle for Christmas.
Having to restrain them during procedures is so awful--I'm sorry:(. Taking DD1 to the doctor was a nightmare until she was three. There were a few times when it took me and a nurse to restrain her so the doctor could check her ears--it was a completely intolerable sensation for her. At least she was able to tell you she was okay. Yay for being a puzzle master!
A few days late and not so much a brag about my kids but my parents. For a really long time they were in denial anything could be wrong with dd--they'd always say "you didn't talk until you were three and you're fine!" I've tried to explain a million times there's more going on than just a speech delay but they're been in denial. When I told them the developmental pedi feels like she may be on the spectrum I assumed they would have their typical reaction and say these crazy doctors make up things about kids who develop on their own timeline. Instead my mom has been researching autism and my dad went to work (he works for the school department) and talked to the special education teachers about autism--i think maybe because he wanted to be told an engaged funny kid doesn't fit the definiton of autism he had in his head, but he finally gets it. It's nice they've come on board instead of burying their heads in the sand.
In the last two weeks 4/5 days have been "good" or "great" days at school for DS. (After several weeks of reports of disruptive and worse behavior). Of course he went back to having expected behavior pretty much immediately after we signed the form initiating the FBA. Also, the 1/5 days he's not getting good reports haven't been as bad and one of the days was the day after Halloween with an unexpected sub.
Yesterday, his teacher said she thinks we've made it through the worst of it and that it was probably just testing boundaries. It'll be interesting to see what the FBA says when it's complete.
This is so funny- I could have written this post word for word. Terrible reports. Requested FBA. Behavior immediately gets better. Bad days aren't so bad anymore. One bad day with a sub teacher. Can't wait to see what FBA says! I'm glad you're feeling some relief! It is so great coming home each day and seeing DS with his smiling face holding a note that says "DS had a great day!"
We are having a tough week so it's not always easy to see the good - but even while screaming and crying while being "sheet restrained" during the surprise EEG this week, DD was able to communicate that she was "OK" while I and the other tech held her down. I told her it is OK to cry as much as she wanted during the lead placing process but she kept saying "yes" to "but you are OK right?"
Also, she is the puzzle master - thinking of going for the M&D U.S Map puzzle for Christmas.
Having to restrain them during procedures is so awful--I'm sorry:(. Taking DD1 to the doctor was a nightmare until she was three. There were a few times when it took me and a nurse to restrain her so the doctor could check her ears--it was a completely intolerable sensation for her. At least she was able to tell you she was okay. Yay for being a puzzle master!
Thank you! As I told one of my IRL friends, the hardest is being the only one there, no one knowing we are or were there, and coming home only to emailing/texting friends (calling on really tough days though). She has been saying for awhile now, "not sick anymore, no doctor," oh how I wish this was true!
Yes, her therapists aren't sure what to do because she goes through their puzzle stacks in less than her 5 min attention span goal
Re: brag day wednesday
DS 09/2008
He wants the Michaelangelo action figure from the Teenage Mutant Ninja Turtles. He has been telling DH and I almost everyday. He told our ABA therapist when she was over one night to work with him.
I think Santa knows by now.
DD1, 1/5/2008 ~~~ DD2, 3/17/2010
We are having a tough week so it's not always easy to see the good - but even while screaming and crying while being "sheet restrained" during the surprise EEG this week, DD was able to communicate that she was "OK" while I and the other tech held her down. I told her it is OK to cry as much as she wanted during the lead placing process but she kept saying "yes" to "but you are OK right?"
Also, she is the puzzle master - thinking of going for the M&D U.S Map puzzle for Christmas.
Having to restrain them during procedures is so awful--I'm sorry:(. Taking DD1 to the doctor was a nightmare until she was three. There were a few times when it took me and a nurse to restrain her so the doctor could check her ears--it was a completely intolerable sensation for her. At least she was able to tell you she was okay. Yay for being a puzzle master!
Thank you! As I told one of my IRL friends, the hardest is being the only one there, no one knowing we are or were there, and coming home only to emailing/texting friends (calling on really tough days though). She has been saying for awhile now, "not sick anymore, no doctor," oh how I wish this was true!
Yes, her therapists aren't sure what to do because she goes through their puzzle stacks in less than her 5 min attention span goal