We went to Disneyland for the Memorial Day weekend. Flew down on Friday and back on Monday and did the whirlwind tour of Disneyland and Disney's California Adventure. Spent tons of money (of course) but it was well worth it, for the smile quotient if for nothing else. Roo had a grand time. She loved the character breakfast where we met Minnie, Tigger, Chip & Dale, Eeyore and even Captain Hook. We tried to wait in line for a visit with Mickey in his house in Mickey's Toontown, but that wait proved a bit too overwhelming and we had to settle for Goofy instead. Oh well, she loves Goofy too! Big Sis brought a friend with her who had never been to Disney before and they both had a blast. Having a friend along allowed for more flexibility; and this particular friend has always loved Roo and was great with her on this trip as well. The weather was warm and mostly sunny, so we got a chance to replenish some Vitamin D.
One of my friends told me about the special pass for people with disabilities. I told her that Roo wouldn't need one because she is so mobile, but she said "Get it!" We did and were glad we did. It cut down the wait time considerably at some rides and saved us from any threat of grumpiness (Roo's or ours). Roo did have a little trouble waiting in line to see the Aladdin show and then again when it got dark in the theater, but then she totally got into the show and laughed, sang and applauded throughout. She loved the gigantic Ferris Wheel, the new Ariel ride (we got a sneek preview), Soarin' Over California, the World of Color show and lots more. She was a real trooper both days. We only took a short break the first day and then the second day we stayed on the Disney grounds the entire time from about 8 am until 11 pm. She really didn't fuss much and seemed to be having a great time almost the whole day. We couldn't ask for more than that.
Poor Big Sis has been dealing with a bad cold for a couple of weeks and finally ended up on antibiotics today. She was still a trooper at Disney, probably thanks to having her friend with her.
Now I'm counting down the days until summer break. This is the first year I'm really looking forward to it. We all need some R & R and I don't have too much scheduled. It will be a good thing.
Tuesday, May 31, 2011
Wednesday, May 25, 2011
A pick me up
Too much going on around here lately including the need to schedule appointments to get vision checked and work on various medical issues, and not for Roo, but for her Big Sis. I have a friend whose son has the same medical condition as Big Sis, and he has had a really hard case to crack, much more so than Nadia's. My friend and I talk about how we can't imagine making it through a month, let alone a week, without some sort of crisis in our lives. Truly if it's not one thing, it's another.
One way I de-stress in the evenings is to browse many of the wonderful blogs I've stumbled across in my online travels. There is so much joy and obvious love out there in families with kids with Down syndrome and other disabilities, and there's a great vicarious pleasure in seeing, and remotely sharing in, their children's triumphs. There is also risk in reading intimate details shared over the blogosphere. I've cried many times for children far and wide whom I will never know. I've prayed for many people whose stories have touched my heart as well.
I've always said the Internet is a source for "evil" in certain content, but also a source for great good. The more people blog about their loved ones with disabilities, the more barriers will ultimately be brought down. Their love is palpable, it flows right off the monitor screen. We all love our kids, but there is something even more special about the drive to adopt children, especially children that society once just threw away. Reading the adoption blogs, and all the other wonderful family blogs, is a great pick me up.
One way I de-stress in the evenings is to browse many of the wonderful blogs I've stumbled across in my online travels. There is so much joy and obvious love out there in families with kids with Down syndrome and other disabilities, and there's a great vicarious pleasure in seeing, and remotely sharing in, their children's triumphs. There is also risk in reading intimate details shared over the blogosphere. I've cried many times for children far and wide whom I will never know. I've prayed for many people whose stories have touched my heart as well.
I've always said the Internet is a source for "evil" in certain content, but also a source for great good. The more people blog about their loved ones with disabilities, the more barriers will ultimately be brought down. Their love is palpable, it flows right off the monitor screen. We all love our kids, but there is something even more special about the drive to adopt children, especially children that society once just threw away. Reading the adoption blogs, and all the other wonderful family blogs, is a great pick me up.
Tuesday, May 17, 2011
Introvert vs Extrovert
I consider myself to be a pretty social person. I'm relatively outgoing and have many friends, but I don't truly consider myself an extrovert. I usually have to gear myself up mentally before going out for anything grander than a walk and/or coffee date with a friend. I prefer one on ones to group activities even though I always have a good time either way. I'm not a big fan of large gatherings unless I know I'll know and feel comfortable with lots of people there.
Big Sis is definitely an introvert. When I say that, I am not judging her in a negative way, just saying it like it is, and if she reads this post she will agree with me. She has a growing group of friends at school and enjoys online chatting or phone calls/texting with many of them daily after school. She likes to hang with her core group at the mall or in the school building on early dismissal days, but she does not willingly seek out situations that push her boundaries in the social engagement department.
When I first started reading about Down syndrome, one of the things that stood out to me was the generalization that people with DS are highly social. A lot of the earlier literature also indicates that they are always happy. This myth was put to lie in our house early on! Roo is generally happy but she has ups and downs just like the rest of humanity. But, she is very social. She loves to work a room. After Mass, she will meet and greet as many people as possible and her favorite part of the service is the "sign of Peace." She loves shaking hands with people in the pews all around her. She also talks to everyone we meet, whether they want to or not(!). A sweet thing has been happening each week as we wait for her appointment with her speech therapist. There is a man who uses a wheelchair who has a session with a therapist just before Roo's time. He comes out of a room off the waiting area while we are in there. I think he's a stroke survivor because of his difficulties in articulation and intelligibility. Roo always talks to him and he tries to talk to her as well. It is lovely to see the look on his face when he sees her there. His eyes light up. I love those moments, when two people make a connection, and a bond is created. It's magical. Roo often has that affect on people. It is one of her many gifts.
One issue that has come up recently is her tendency to want to go home with other moms and dads wherever we are. She loves the other kids' parents at her Yoga class and also a dad who comes with his daughter to the speech clinic the same time as us. She will run up and give them a hug and then say she wants to go home with them. Not sure how I feel about that. On the one hand it's lovely to see a happy, socially engaged child; on the other, I will have to fear constantly that she might go off with a stranger. Add that to my ever growing list of stressors! I've always felt there is a fine line in what we teach our children. I tell my older one that there are far more good people in the world than bad, but sadly, the "bad" ones get most of the press. I want both my girls to go out into the world and meet wonderful people, have long term, enriching friendships, and feel safe in their communities. That is the least any of us should want for our kids.
When Roo was around 3 years old, a therapist working with us told me that if she had to pick between academic ability and social ability for a child with a disability, she'd pick social over academics. I want a good mix of both. I want her to have the skills to live and work as independently as she can, but also to feel that she is a valued member of her community and to feel comfortable interacting with a broad range of people. Who wouldn't want that?
Big Sis is definitely an introvert. When I say that, I am not judging her in a negative way, just saying it like it is, and if she reads this post she will agree with me. She has a growing group of friends at school and enjoys online chatting or phone calls/texting with many of them daily after school. She likes to hang with her core group at the mall or in the school building on early dismissal days, but she does not willingly seek out situations that push her boundaries in the social engagement department.
When I first started reading about Down syndrome, one of the things that stood out to me was the generalization that people with DS are highly social. A lot of the earlier literature also indicates that they are always happy. This myth was put to lie in our house early on! Roo is generally happy but she has ups and downs just like the rest of humanity. But, she is very social. She loves to work a room. After Mass, she will meet and greet as many people as possible and her favorite part of the service is the "sign of Peace." She loves shaking hands with people in the pews all around her. She also talks to everyone we meet, whether they want to or not(!). A sweet thing has been happening each week as we wait for her appointment with her speech therapist. There is a man who uses a wheelchair who has a session with a therapist just before Roo's time. He comes out of a room off the waiting area while we are in there. I think he's a stroke survivor because of his difficulties in articulation and intelligibility. Roo always talks to him and he tries to talk to her as well. It is lovely to see the look on his face when he sees her there. His eyes light up. I love those moments, when two people make a connection, and a bond is created. It's magical. Roo often has that affect on people. It is one of her many gifts.
One issue that has come up recently is her tendency to want to go home with other moms and dads wherever we are. She loves the other kids' parents at her Yoga class and also a dad who comes with his daughter to the speech clinic the same time as us. She will run up and give them a hug and then say she wants to go home with them. Not sure how I feel about that. On the one hand it's lovely to see a happy, socially engaged child; on the other, I will have to fear constantly that she might go off with a stranger. Add that to my ever growing list of stressors! I've always felt there is a fine line in what we teach our children. I tell my older one that there are far more good people in the world than bad, but sadly, the "bad" ones get most of the press. I want both my girls to go out into the world and meet wonderful people, have long term, enriching friendships, and feel safe in their communities. That is the least any of us should want for our kids.
When Roo was around 3 years old, a therapist working with us told me that if she had to pick between academic ability and social ability for a child with a disability, she'd pick social over academics. I want a good mix of both. I want her to have the skills to live and work as independently as she can, but also to feel that she is a valued member of her community and to feel comfortable interacting with a broad range of people. Who wouldn't want that?
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