Totally OT: Musings of a mom

[taximomfor4]

Unfortunately, you would be surprised. I know a mother with a child who has cerebral palsy. This mother complains to her daughter every time she has to take her to the bathroom, every time she has to get her dressed, every time she has to carry her up and down the stairs. Sometimes it's a little comment and sometimes she yells at her that she's not "standing straight enough" or whatever it is that is bothering her. The mother tells her daughter constantly that she "talks too much". She clearly forgets that there was a large chance she would never hear her daughter talk. The mother has had almost no help in the past 11 years since her daughter was born, she is bitter. Her children are bitter. She hasn't failed but she is unhappy, her family is unhappy. The child who is disabled blames herself. Some parent's just can't do it.

Your children are lucky.

How very sad...for all involved. As much as I want to be disgusted at the mom, (and I AM, a bit), what a mess she, too, must be inside. I cannot imagine how much someone who acts like that must really hate THEMSELVES. Sad, sad, sad for all involved. Especially the kids.

 

[welovedis]

Thanks for posting this Sue and everyone else who responded. I'm having a terrible morning with DS and this just put it all in perspective. Suddenly my morning seems like a piece of cake.

 

[Michigan]

Loved the post and can identify with the bra issue but for my youngest DD it's pants. She is so tiny and has no hips that when she gets out of her wheelchair in class and gets on the floor with the other kids she crawls out of her pants. Every morning we have the if you are going to crawl remember to check that your pants are on your bottom and not around your knees. She is in a regular ed 2nd grade class and the other kids have never said anything about it for that I am glad but sometimes she gets home from school and her pants will be almost all the way off her bottom and she never notices it.

 

[SueM in MN]

Loved the post and can identify with the bra issue but for my youngest DD it's pants. She is so tiny and has no hips that when she gets out of her wheelchair in class and gets on the floor with the other kids she crawls out of her pants. Every morning we have the if you are going to crawl remember to check that your pants are on your bottom and not around your knees. She is in a regular ed 2nd grade class and the other kids have never said anything about it for that I am glad but sometimes she gets home from school and her pants will be almost all the way off her bottom and she never notices it.

I remember those days. My DD was able to crawl when she was little and sometimes crawled out of her pants too. One of my favorite things was at the regular daycare/preschool she attended. One day they had an Olympics, with all sorts of things the kids could compete in. They added a crawling competition for the 4-5 yr olds, knowing that most of them hadn't crawled in years and would be slow and clumsy. My DD won easily and it was cool to see her compete on something she was much better on than the other kids her age.

 

[SueOKW]

Loved the post and can identify with the bra issue but for my youngest DD it's pants. She is so tiny and has no hips that when she gets out of her wheelchair in class and gets on the floor with the other kids she crawls out of her pants. Every morning we have the if you are going to crawl remember to check that your pants are on your bottom and not around your knees. She is in a regular ed 2nd grade class and the other kids have never said anything about it for that I am glad but sometimes she gets home from school and her pants will be almost all the way off her bottom and she never notices it.

My son wears pants from Gap - -they have an inner elastic belt that make them hug very tight to his waist... when his aid lifts him up his trousers had a tendancy to fall down a bit - that stopped that.. fwiw!!!

I feel so bad for that family mentioned above - not having any help at all can cause so many problems... my DH can get like that with our DS.. so I am glad we were lucky enough to get respite care.... saved our home!!

 

[boosmom96]

Sue,
Thanks for the wonderful post! I love the dance picture!!! I have just found a dance company in our area (Axis Dance) that offers mixed classes for special need & typical kids. We are planning on starting in March, although my DD will flip!! if they try to put her in a tutu!! (SO NOT a girly girl!!)
Since I can't figure out how to post a picture, I've posted a link to the website of my DD's school. The Bridge School ( The smiling kid wearing the blue shirt is my daughter, Elisabeth) We are so amazingly fortunate that DD is able to attend.
I have to laugh at the pants issue. We have the exact same problem!! I dread it when winter rolls around and DD can't wear shorts all the time. She can fit into a 4 toddler short, but needs and 8 or 9 pant for the leg length. I was so relieved to find the Gap adjustible waist pants!! (FYI, Gymboree also sells them.)
Reading through the various posts, it is really comforting to see that so many other mom's think just like I do. I know that people mean well when they say things like "You're so amazing, I don't know how you do . . .", but it can get really frustrating to hear all the time. The friendship and support of other mom's is really what gets me through.
It's was really great to find this board. Even though we're not planning a trip to WDW in the near future, it is still a really great community to hang out in!

 

[SueM in MN]

Unfortunately, you would be surprised. I know a mother with a child who has cerebral palsy. This mother complains to her daughter every time she has to take her to the bathroom, every time she has to get her dressed, every time she has to carry her up and down the stairs. Sometimes it's a little comment and sometimes she yells at her that she's not "standing straight enough" or whatever it is that is bothering her. The mother tells her daughter constantly that she "talks too much". She clearly forgets that there was a large chance she would never hear her daughter talk. The mother has had almost no help in the past 11 years since her daughter was born, she is bitter. Her children are bitter. She hasn't failed but she is unhappy, her family is unhappy. The child who is disabled blames herself. Some parent's just can't do it.

Your children are lucky.

There are people who shouldn't have children at all. I saw that very clearly when I worked as a nurse in school, in an inpatient child and adolescent Psych unit and as a Public Health Nurse.
Whether their child had disabilities or not, they would find things that were "problems" with their child. If they have a shy child, they will complain they are too quiet. If the child is more outgoing, they may complain about that. A lot of them had parents who treated them the same way. They are very unhappy people and their child is just something more to be unhappy about. Some don't kow how to love because they never felt loved themselves. Some are trying very hard, but don't have (or don't feel they have) support. Some are past trying and some never going to make it to a point where they can try.
Every child (disabled or not), deserves parents who love and take care of them. Some unfortunately don't have that.
To all parents.

 

[Earstou]

Thanks for the thought provoking and heartfelt posts!
Having an ASD child, I would have loved to hear people say "You're so amazing, I don't know how you do it. . .", instead of thinking I had a neuro-typical child with no discipline! It's hard enough to handle a meltdown in public without all the dirty looks and sometimes comments from onlookers. Until a recent doctor visit, my mom was the only person to tell me I was a great mom, and boy have I treasured that comment.
But I do understand the feeling, as I get the "how do you handle it?" type of questions concerning my own illness. I usually ask, "what else can I do?" which causes them to stop and think, and agree with me!!!
It's also wonderful to hear about these dance classes!

 

[dizcrazee]

Thank you for the wonderful post (you always know how to make tears start blurring my screen) and the beautiful picture. You are so eloquent in your writing and I love your descriptions of the dance class (the thing with the purse made me smile through my tears)! God bless!

 

[D L and K's Mom]

Thank you for the wonderful post. The photos are GREAT!!!! I love being able to come here and read and post with other people who really "get it". They get the ups and the downs. They understand how one little thing can be a HUGE thing to our kids (the purse.....I really identified with the purse). Thank you for opening up and writing.

 

[SueM in MN]

My SIL sent me a link to a news story about a dance class that is sort of similar to the one my DD goes to, so I thought a good place to add it would be this thread from the past.
Link to a CBS News story about a dance class in New York for girls with disabilities.

 

[SueM in MN]

We were at DD's dance class this morning and the subject of dance classes for people with disabilities came up. Apparently someone heard something on the radio about dance classes for people with disabilities.

Anyway, it made me think of this post, and I decided to bump it since it has not been on the top in a while.

 

[Lachesis00]

What great posts! Thank you Sue for starting it

 

[ireland_nicole]

Sue,
I hadn't had a chance to read this thread, and I really appreciate your candor and insight. It's so easy sometimes to feel isolated and envious. And then, of course, to feel guilty for feeling envious. Thank you for being honest enough to share your feelings and your experience. I love the dance class your DD attends; I love the philiosphy of it; the positive inclusivity of it; the community of it. And this weekend, I am reminded that all our kids are precious blessings from God; perfectly and wonderfully made, and I am truly grateful.

BTW, your DD looks wonderful in her tutu!

 

[SueM in MN]

Sad update to this post that started out a long time ago about the Uniquely Abled Dance Center.
Nancy Raddatz was my daughter, Katrina’s dance teacher for more than 20 years.
Even though Katrina is disabled and uses a wheelchair, Nancy felt no disability was ‘too’ anything to enjoy dance.
The Uniquely Abled Dance Center was Nancy’s creation and passion.
Katrina and I missed the last scheduled dance class in March 2020. Because of COVID, the classes were suspended and we never got to say goodbye.
I’m glad to read that Uniquely Abled Dance will probably continue without her.
Nancy was special and Katrina and I will never forget her.
https://www.twincities.com/2021/04/...z04WD6pO3JxCy0VIVx3vEwGW3Ve5hoRSHN-umwTn1ryhA

 

[mamabunny]

I am so sorry to see you and your daughter have lost someone so special. (((hugs)))

 

[DisneyOma]

Sadly, can't read the article without providing an email. Glad to hear that you think the program will continue though - that would be a wonderful legacy. We had a program in the area that would do dance classes and singing classes with the special needs community. When the woman who ran the program decided to retire, her daughter took over. It's an important program in our community, and it would be a huge loss if it decided to close down. I hope your program keeps going!

 

[KPeterso]

First time I have seen this post. I really enjoyed reading about your daughter and her dance school. I am sorry to hear about her teacher. I really hope they find a way to continue so your daughter can keep dancing.

My niece has charcot marie tooth disease (progressive neurological disease). She has a very hard time walking but told her kindergarten class that someday she was going to dance and dance the part of the sugar plum fairy. She goes to Ballet for All Kids and has worked hard for many years to dance and it has all helped with her balance issues. A news story from a few years ago about her and Ballet for All Kids. I am always so proud of her. All my friends and co-workers know about her, so after every dance recital, I come in showing off new videos of my girl.

https://www.usatoday.com/story/news...able-walk-her-own-dancing-ballerina/96633118/