We took Pup to Disneyland for the first time.....an annual holiday adventure. He went on Dumbo, Pirates of the Caribbean, and others. Of course, with the exception of during this picture he wasn't at all fussy. It was a good day.
Here's A.J......He IS his mama's son for sure.
Pup tried carrots tonight. Liked them. His teeth on the top are really coming in. Drool everywhere and lots of hand biting. He's always laughing, especially at his big brother. It makes me happy. I just got the new issue of the Fragile X.org newsletter and there's an article in there by Jayne Weber that completely made me cry. It's all about the good that comes with having a child with FXS. I've been in a rut lately thinking about the future. Then I hear him laugh and I am healed. I'm having a really hard time lately, though, because as a teacher I have a few kids in my class with some special needs. One has autism and the other two don't have diagnoses but their behaviors are challenging, and they have definite learning disabilities. I think about Pup and what he'll be like when he's in school. Other teachers and even parents of other students are sometimes insensitive with comments about certain students, and I'm particularly sensitive to those comments now that I have my own child with special needs. I want to say, "Don't you know who you are talking to?" People don't get it.
OMG! I just turned around and AJ is playing "therapist" with Pup. They're doing "exercises."
4 comments:
That is sad and must be really hard.. i keep my finger's crossed every day that Holly continues to do well, but sometimes I wonder if I am living in Denial land, so many parents didn;t know there was anything wrong with there child until they were 2-3 so maybe many FXS kids seem typical when they are babies.. Sorry about your rut. It seems like AJ is really good for Harrison I hope you guys had fun at Disney. We are thinking of going to Universal while we are in florida.
Vicki- We believe we are in Denial land as well. He seems very typical. It's really hard as my sister's son and good friend's son are only a few months younger and older than him. It'll get harder as I see them progressing and probably doing things my son wont. Or, maybe he will! You know, I still haven't gotten his blood test back! I emailed Dr. Hagerman and she said she'd have them for me last week. I never heard. I sometimes feel like I don't want them as then it would REALLY verify the results. With the early intervention you are giving Holly....who knows?! Katie Clapp (Pres. of FRAXA) says her daughter and son both have full mutations but her daughter has few/no symptoms. Wouldn't that be wonderful? I'm not telling you everything is going to be fine (primarily because that pisses me off when people do that to me and I'm sure people tell you that) But I will keep my fingers crossed for you too. That's really all we can do, right? That...and therapy! Sorry I didn't call you back. We were so busy during the holiday...and then I went back to work. I feel like time is flying.
The denial thing is hard. Evan's development was so normal the first year, and even though I didn't have the results until after he turned one, I "knew," yet I held out hope. And although I accepted the diagnosis of the older two long ago, I know I'm not completely there with Evan yet...kind of crazy, I guess.
This is my first year as a teacher; I worked for a few years as a para. The thought of Evan ever setting foot into a school...I don't let myself think too much about that. Yes, working in the school is a huge eye opener.
"Mrs. Smith" I just rediscovered your blog (internet is intermittent round here) and I love to ready your thoughts and feelings. I also love seeing how your family is growing through this-- AJ playing therapist and Dad and sons working together during visits... This really makes me feel like I'm not so far away from you all. We're thinking of you today as I know it's holiday party time-- see you in the new year. Love stef
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