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Post by MaggiesMom on Oct 6, 2004 22:52:26 GMT -5
Your child doesn't sound too delayed for a child with DS to me. Maggie is deaf in her left ear and has moderate loss in her right ear. We often struggle to know what we should expect with DS and hearing loss.
Have you had your child's hearing tested? It should be done every year. And ask them to do a tympanogram, which checks for fluid as well. The doctor cannot always visually see fluid behind the ear drum. And it can make a difference.
Maggie had to have tubes. Not due to ear infections, but due to fluid and having negative pressures in her ears. Add that to hearing loss and it's not a good thing!
I hope in your case it's just a case of waiting. Maggie has really started trying to talk this summer. Before she didn't even try. She still doesn't call me or her brother by name. But she does her Daddy. She's a huge Daddy fan!
Take care.
Robin M - Maggie's mom
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Post by MaggiesMom on Oct 2, 2004 23:12:39 GMT -5
Your post warms my heart!
With Maggie's hearing loss, the question of when I'll get to hear Mama and other joyous sounds often enters my mind.
I'm so glad to hear that he is doing well and there is always hope for greater success.
Take care.
Robin M - Maggie's mom
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Post by MaggiesMom on Oct 2, 2004 23:09:56 GMT -5
We used Hip Helpers with Maggie to help her with her base of support. She kept her legs spread way far apart.
I made a couple of similar pairs after that to have in colors that matched her clothes. Easy to do.
What we found that worked well too is taking a terry cloth head band and sewing it up in the middle. So it makes like a "8". Put one leg in each side and pull it up to the thigh. Adjust the sizing as need by sewing more or less to get it tight enough. Worked great!
This too will pass!
Robin M - Maggie's mom
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Post by MaggiesMom on Sept 27, 2004 22:48:44 GMT -5
Prayers for Joshua! Please keep us updated.
Robin M - Maggie's mom
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Post by MaggiesMom on Sept 27, 2004 22:54:35 GMT -5
Our experience with Pinatas has been this...it's fun, but a little dangerous and a lot of mess!
The first time I didn't know NOT to put hard candy or anything that can BREAK...think sweet tarts...so when it did get busted, it went everywhere! I was vaccuming for hours. LOL And we had to get an adult with a metal bat to break it open!
The second time, I carefully cut along all the outside edges of the pinata so that it was going to bust after the third whack. It worked, the kids had no clue and I didn't have to vaccum! I didn't put hard candy in there either! Just in case!
Both times we did it, it was with older kids. So I'm not sure I'd want to try it with preschoolers. But, if you're the brave type...just be careful!
Have fun!
Robin M
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Post by MaggiesMom on Sept 27, 2004 22:57:36 GMT -5
We're praying for that little guy! Please keep us posted!
Robin M - Maggie's mom
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Post by MaggiesMom on Oct 6, 2004 23:01:24 GMT -5
Maggie went to Kindermusic last year and loved it. It's for many ages...birth to like 10 I think.
The nice thing is it wasn't language essential. We listened, which is a huge component they teach, and danced and moved to music. They played instruments, read books and even did crafts during the summer.
It is a lot of fun. The photo I put in the very first month of the photo album has Maggie in her music class. It's hilarious.
Our OT just asked us about music therapy. She's bringing more info next week. I'll let you know what she says.
See ya - Robin M
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Post by MaggiesMom on Sept 23, 2004 23:48:03 GMT -5
I used pacis with both my children because I have a friend who's teenager still sucks her thumb! I didn't want to fight that battle.
We have a ST who says it's not unusal for adults to wake up with wet thumbs who were thumb suckers as children! LOL I thought that was a little wild. But, interesting.
My therory is it's easier to throw out the paci than a kid's thumb. It worked for Matthew and when ever my dh decides HE can live without Maggie's paci at night, she'll lose hers too. He is the one that has to put her to bed, so he doesn't want to deal with it. I say get over it! LOL
Anyway, I nursed Maggie till she was two because EVERYONE told me it was the best thing for her. Her ST also said that any mouth exercise we can get her to do would be great. So why not pacis?
I know everyone has their "Thing" about thumbs or pacis. I say do what you are comfortable with!
Take care.
Robin M
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Hello
Sept 21, 2004 22:39:44 GMT -5
Post by MaggiesMom on Sept 21, 2004 22:39:44 GMT -5
Hello and Welcome! This is a wonderful site!
I'm Robin M - Maggie's mom. Maggie has hearing loss as well as DS, so we're big into those issues.
I have to ask...have they checked your little one's hearing yet? If not, please do.
I hope that all children's hearing is checked at birth these days. But, if not, it's a great thing to do as soon as possible. So much can be done if it it caught early!
(Sorry, public service announcement!)
Take care.
Robin M
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Post by MaggiesMom on Sept 20, 2004 20:53:17 GMT -5
Happy Birthday to both of you. Hope this year is way better than last year!
Robin M
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Post by MaggiesMom on Sept 20, 2004 20:54:24 GMT -5
I teach this in my tutoring sessions. It's great hands on stuff!
Take care.
Robin M - maggie's mom
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Post by MaggiesMom on Sept 20, 2004 20:51:34 GMT -5
Maggie has always been great at keeping herself entertained and not being fussy. From the start, she would lay on the floor and play with toys etc. My son Matthew would NEVER play by himself. He's 10 and still has to be entertained by the tv or games etc. She was a great nurser and slept well. Unfortunately, she still wakes up at night. But, she always goes right back to sleep. Just gotta find that paci! Her personality is to die for. Sweet and loving. Adventurous and energetic. Never a dull moment. Well I could go on. I love that kid! Can you tell? I wouldn't trade her for any typical kid. See ya, Robin M - Maggie's mom
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Post by MaggiesMom on Sept 5, 2004 20:15:15 GMT -5
Unfortunately, it's a lot like that here too. We constantly have to fight to get what Maggie needs for her hearing loss. Her DS is addressed for the most part. Since deafness is a "low incidence" disability, there isn't much attention given to it. It stinks!
I'd love to see pictures of where you live.
Take care.
Robin M - Maggie's mom
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Post by MaggiesMom on Sept 5, 2004 20:06:42 GMT -5
Renee,
I'm so sorry to hear that this has happened. I think you've gotten good advice about seeking professional help with the police and maybe some counselors. Documentation will be vitally important.
Here in VA, we have a state run organization that has lawyers and other professionals who's sole purpose is to defend the rights of those who are disabled. Maybe your state has such an organization. It's worth a look.
I pray that it's all a big mistake, but if it isn't, I pray that the person will be punished to the fullest extent possible.
Keep us posted. We'll be praying for you all.
Robin M - Maggie's mom
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Post by MaggiesMom on Sept 5, 2004 21:16:15 GMT -5
Great picture! Thanks for sharing.
Robin M - Maggie's mom
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