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Raising Special Needs Kids Raising Special Needs Kids

Welcome to Raising Special Needs Kids! Please Introduce Yourself.....

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by on Feb. 16, 2012 at 5:09 PM
Replies (1111-1120):
letstalk747
by Joy on Jan. 4, 2013 at 8:46 PM
1 mom liked this

welcome Cathy , im joy , glad you are here

Quoting mamaCathyT:

Hi I'm Cathy My kido's are Emily (11) gifted with ADHD, Connor passed away at birth from nura tub abnormalitieswould be 10.5, Ethan (9.5) many medical complications they geneticist believes he has SOX6 syndrome along with a second genetic issue but no other child on record has the same malformations that we can find. Along with the cromazone abnormalities Ethan  has JRA and is 3 grades behind is school due to learning problems and ADD.  Elizabeth (2.5) is my spunky youngster.


darbyakeep45
by Darby on Jan. 5, 2013 at 5:09 AM
1 mom liked this

Welcome to the group!  Glad to have you here:)

Quoting Bawyada:

Hi, I have 2 boys 15 & 14. I am 42 and have been married 21 years.

The 14 year old has mild cerebral palsy and severe mental retardation. He is in diapers, walks with a walker, mostly non-verbal, says "hi" and "go go bye bye". We are blessed that he is very healthy (knock on wood). He's basically happy if someone is sitting in a room with him listening to music. He gets over stimulated in crowds. He screams a ton, mostly of excitement. We get respite but of course never enough it seems. :-) I'm basically ok with it by now, but there are times when feeding him, diaper changes and the screaming drive the restof us crazy!!! He had diarrhea on x-mas and it puddled out of his pants onto the KITCEN floor while I was hosting!!! UGH!!! Luckily my husband and son help a lot.

Lately my husband has been accusing me of barricading myself away from the family in my room reading my book. He's right but I guess I just don't care, they drive me nuts most of the time. My 15 year old argues with me constantly, I'm sure it's just normal teen hormones. 

That's me, so glad I found this site, but there is so much to read, I don't knowhowI will ever get off the computer.





darbyakeep45
by Darby on Jan. 5, 2013 at 5:10 AM

Welcome Cathy!

Quoting mamaCathyT:

Hi I'm Cathy My kido's are Emily (11) gifted with ADHD, Connor passed away at birth from nura tub abnormalitieswould be 10.5, Ethan (9.5) many medical complications they geneticist believes he has SOX6 syndrome along with a second genetic issue but no other child on record has the same malformations that we can find. Along with the cromazone abnormalities Ethan  has JRA and is 3 grades behind is school due to learning problems and ADD.  Elizabeth (2.5) is my spunky youngster.


burgandymonroe
by on Jan. 6, 2013 at 2:17 AM

My name is carrie, i have a beautiful daughter that is 10months. It took 2 yrs and a tubal pregnancy to finally get preganant for me and my daughters dad. around 5 to 6 months in a quad screen showed she was at a high risk for trisomy 18, the docters wanted to do an amnio to see if she was afflicted with this genetic disorder or not. fearing it causing further complications, and giving the fact that we had waited so long and tried so hard to even have a viable pregnancy so we knew no matter what we were all in and going all the way, we opted to not get the amnio. My daughter was born on feb 14, 2012, after a long and hard two day labor, by C-section.  she was rushed to the NICU where me and her spent 2 weeks, though she did not have trisomy 18 (which was a big blessing) she was not able to eat her food by mouth so she has a feeding tube, and she has two displaced hips, scoliosis, and a closed form of spinal bifida that we know thus far. We did see genetics and they belive the culmination of her problems all fall under a form of skeletal displasia aka dwarfism, they sent her full skeletal xrays to a specialist at UCLA and they said it could take between 6 months to a year for results 
(we are still waiting).

She is the sweetest, most personality filled baby and though these past 10 months have been non stop between occupational and physical therapies, seeing specialist about her stomach issues and her hips and spin, all while going to school online so I can be with her all the time. I woulden't trade her for the world or change her.  I do have a supportive mom and dad, which I find escential, but no matter how supportive they are no one can really understand how much more difficult it is caring for your child when you throw in all the appointments, then the stress of wanting your kid to succeed at task that are simple for others, and how hard you push your self to give them as much of an advantage as you can at succeeding since you know it is harder for them. example my daughter still has to use NG tubes for her formula, she can drink better than she use to but it is still a daily struggle to get the necessary amounts of fluid into her if not with the NG tube. Given the fact that she is almost 1 her doctors don't want her using NG tubes much longer and if she can't begin to take in her necessary fluids by mouth soon they want to put a perminant G tube into her stomach directly. This has been one of the most dificult parts of these 10 months is the fear she won't be able to take in her fluid by mouth and will have to get surgery, I feed her every two hours or so because she won't drink more than 2 to 3 ounces regularly, some times a little more or less, and I document all her food intake to make sure she gets her cslories and fat and fluis for the day. It just consumes my life, which I don't necessarily mind except that even with all the hard work from me and her, she still needs her NG after 10 months and is close to having to have the more perminant G tube put in.  Even though people may try they can't really understand those feelings until you feel them, so I feel very excited to be able to talk with and find friends that can relate and we can be a support system for each other:)

darbyakeep45
by Darby on Jan. 6, 2013 at 6:47 AM

Welcome!

Quoting burgandymonroe:

My name is carrie, i have a beautiful daughter that is 10months. It took 2 yrs and a tubal pregnancy to finally get preganant for me and my daughters dad. around 5 to 6 months in a quad screen showed she was at a high risk for trisomy 18, the docters wanted to do an amnio to see if she was afflicted with this genetic disorder or not. fearing it causing further complications, and giving the fact that we had waited so long and tried so hard to even have a viable pregnancy so we knew no matter what we were all in and going all the way, we opted to not get the amnio. My daughter was born on feb 14, 2012, after a long and hard two day labor, by C-section.  she was rushed to the NICU where me and her spent 2 weeks, though she did not have trisomy 18 (which was a big blessing) she was not able to eat her food by mouth so she has a feeding tube, and she has two displaced hips, scoliosis, and a closed form of spinal bifida that we know thus far. We did see genetics and they belive the culmination of her problems all fall under a form of skeletal displasia aka dwarfism, they sent her full skeletal xrays to a specialist at UCLA and they said it could take between 6 months to a year for results 
(we are still waiting).

She is the sweetest, most personality filled baby and though these past 10 months have been non stop between occupational and physical therapies, seeing specialist about her stomach issues and her hips and spin, all while going to school online so I can be with her all the time. I woulden't trade her for the world or change her.  I do have a supportive mom and dad, which I find escential, but no matter how supportive they are no one can really understand how much more difficult it is caring for your child when you throw in all the appointments, then the stress of wanting your kid to succeed at task that are simple for others, and how hard you push your self to give them as much of an advantage as you can at succeeding since you know it is harder for them. example my daughter still has to use NG tubes for her formula, she can drink better than she use to but it is still a daily struggle to get the necessary amounts of fluid into her if not with the NG tube. Given the fact that she is almost 1 her doctors don't want her using NG tubes much longer and if she can't begin to take in her necessary fluids by mouth soon they want to put a perminant G tube into her stomach directly. This has been one of the most dificult parts of these 10 months is the fear she won't be able to take in her fluid by mouth and will have to get surgery, I feed her every two hours or so because she won't drink more than 2 to 3 ounces regularly, some times a little more or less, and I document all her food intake to make sure she gets her cslories and fat and fluis for the day. It just consumes my life, which I don't necessarily mind except that even with all the hard work from me and her, she still needs her NG after 10 months and is close to having to have the more perminant G tube put in.  Even though people may try they can't really understand those feelings until you feel them, so I feel very excited to be able to talk with and find friends that can relate and we can be a support system for each other:)


whos_ur_momma3
by on Jan. 6, 2013 at 12:46 PM
Hi, and my name is Jennifer and I am a single mother of 3 amazing boys, and ages 12, 8,and 6. My 2 older boys both have special needs. They both early on had infantile spasms ad later dx'd with autism. They are both nonverbal. Every day is something new and a learning experience! I am glad I ran across this group, and and excited to be apart of it and talk to some of you! Thanks for having me!
darbyakeep45
by Darby on Jan. 6, 2013 at 5:58 PM

Welcome Jennifer!

Quoting whos_ur_momma3:

Hi, and my name is Jennifer and I am a single mother of 3 amazing boys, and ages 12, 8,and 6. My 2 older boys both have special needs. They both early on had infantile spasms ad later dx'd with autism. They are both nonverbal. Every day is something new and a learning experience! I am glad I ran across this group, and and excited to be apart of it and talk to some of you! Thanks for having me!


GELiz
by on Jan. 6, 2013 at 6:05 PM

HI, I'm a retired teacher, grandma and tutor. I also write grammar and writing curriculum with special needs in mind. I wrote it first to use in my inclusion classroom. It worked so well, that I started to sell it. Right now, I am trying to boost my tutoring business and am beginning to put together a vocabulary curriculum using categorization  to help with retention. I am here to learn from the experts of children with disabilities: their moms. But I hope to be able to share any knowledge I might have that can be helpful to you as well. thank you for letting me into your lives.

katie_c25
by on Jan. 6, 2013 at 6:47 PM

Hi, I'm Katie. I'm 28, married for 8 years and I have 2 kids. My 6 year old DD has ADHD-combined, she was diagnosed at 4 and is doing great in first grade thanks to her meds (although she's still a terror at home, but guess that's just because I'm Mom lol). My 3 year old DS is still a bit of a mystery. I suspect that he has Aspergers, we have an appointment with his pediatrician tomorrow morning so I can tell him about my concerns and see what he thinks and where we go from here. My DH is a bit older than me, set in his ways, and thinks that none of this is real since it wasn't around when he was a kid, he doesn't see a problem with our son at all, but he doesn't pay much attention. So it's going to be an interesting appointment lol. Looking forward to getting to know everyone.

ZansMommy
by on Jan. 6, 2013 at 8:45 PM

Hi.  My name is Stacy.  I'm not sure if this is the right group for me or not, but I'm just starting out on this journey and really could use some support and words of wisdom from moms out there. 

I just moved in with my fiance and his children (he has custody of them) last weekend.  I have two children from my previous marriage (DS age 7, DD age 4) and he has four kids (all DSs ages 15 through 6) from his.  We are getting married later this year but found a great house and decided to start blending our families early.  So far it has really been adventure.  Things are made somewhat difficult by his 9 year old son, who has some sort of behavioral disorder, most likely ODD (he has been referred by his counselor to see a clinician and we will hopefully have a better idea of diagnosis soon and some better tips and tools for working with him).  Things in the house are always dramatic, always loud, always full of conflict.  When his DS doesn't get things exactly as he wants them, he gets beligerant and violent.  My kids don't quite know what to make of this and I'm having trouble continually dealing with it.  He is incredibly defiant, yet at the same time, he seems to have developed a bond with me and calls me mommy and can be incredibly sweet to me.  His is a long story involving his adoption, learning at too young an age (from the birth mom and adoptive mom) that he was adopted, and then later his adoptive mother basically rejecting him.  He has a lot of issues with attachment and anxiety towards abandonment- totally understandable.  He is Dr. Jekyl and Mr. Hyde.  He's a sweet boy half the time, happy to help or sit and be cuddled with and the other half incredibly difficult to handle- controlling, violent, defiant, beligerant and antagonistic.  I love him but at times he's difficult to like. He drives his siblings, his father and me to insanity.  It's a lot to take on and adapt to.  My fiance is an amazing father and partner though and I do love his kids already as if they were my own, so I am willing to take on the challenge.  Still, I know I am going to need support and guidance.  I joined a step mom group too, but I think more than help with being a step parent, it's the words of wisdom from moms who have children with special needs that I am going to need the most.  I hope this is the right place for me. 

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