Monday, January 28, 2013

Mama Hop Monday - Volume 4

Wow!  The blog hasn't been updated since last Monday.  We have a really good excuse - a major life change that has shaken things up around here (more on this later).  On top of that, we hosted YaYa and Papa over the weekend and participated in our 4th annual Chili Cook Off to benefit kids with special needs.  Stay tuned for a separate post on that.  But for now, it's time for the fourth edition of:

Question
From all your observations in the schools and life in general, what is one change parents of children with disabilities could make in order to help their child?
- Kelli
 
Answer
The best thing is to stay informed and "shop" for services for your child. Change them if need be.
 
Question
How did you handle the news of having a baby girl with Down Syndrome 35 years ago?
Is there anything you regret about Leanne’s education, the way you raised her or anything you wish you could’ve done different? And why?  Also, I would love to hear any funny stories from when you guys were younger and growing up!  Oh!! and her secret to always looking so fresh and beautiful!
- Carolina
 
Answer
I did not know what Down syndrome was 35 years ago, so tried to get informed ASAP. I joined a parent group. I was in graduate school and got my masters in sp ed.

I wish I could have been a stay at home mom until the girls began school.
 
There are many hilarious stories from the girls growing up. One of the favorites is when Elizabeth and the 3 little girls from down the street (all ranging from 4 to 8) were playing in the playhouse in the back yard. Apparently, they were giving Leanne a hard time. She did not get mad; she got even and locked them in from the outside with a padlock.
 
"Fresh and beautiful"?!  THANKS!!! The secret is to break the camera if they catch you looking haggard. Ha!

Question
I would love to know how she has prepared/arranged for Leanne's future financially. I'm sure having a sister that loves her so much helps with the peace of mind! We are looking into special needs trusts and just don't know anything about it! I would also like to know how she gets you back for all the abuse you dish out on this blog about her!
- Jenni
 
Answer
We set up a trust with an estate attorney to cover expenses that "entitlements" may not. Never too soon to start saving for that.
 
Oh Jenni!    Could hardly wait to answer this one regarding the blog abuse. Laughing right now...
 
Hmmm. I could spend all my retirement income on useless junk that Elizabeth will have to clean out of the house when I'm gone: used make-up, knick knacks, TV infomercial promotions... You have me thinking. : ) Elizabeth's love for Leanne means the world to me, so I cut her some slack. 

Question
How is it different in society having a child with Down syndrome now as opposed to when Leanne was born. Attitudes etc
- Mindy

Answer:
I think society still needs to change with some ignorance and attitudes, beginning with the medical community at birth. School inclusion has helped a lot, since young children are usually more accepting and influenced in compassionate ways. Who could not love Down syndrome kids with such beautiful hearts?!




6 comments:

  1. My daughter will be three in August and I do not want to put her in school until she is 4. I want to place her in a typical elementary school however many therapist are advising to place her in an all special school...I know I have the last call, did you place Leanne in a public school?

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  2. Thanks Mama Hop! Giggling over your revenge plan right now. :)

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  3. I hope everything is alright (major life change that has/is changing things up)

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  4. Can we invent a day of the week that starts with L? I want a weekly Leanne post too!

    I really really love Mama Hop Mondays!

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  5. Thank you so much for answering my question. That was great advice. If you don't mind, I have another question. I am currently in grad school to be a speech pathologist. Based on your experience with speech pathologists, what advice can you give me on working with families with extra special children? What has been helpful to you and Leanne and what hasn't been helpful?

    -Kelli

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  6. Thank you for answering my questions Mama Hop!! I wish I could stay home and spend more time with my son, being able to work less would be nice. That little "revenge" from Leanne was great! I bet they learned their lesion!
    Carolina - Line7711

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