Author Topic: Wanted: Special Needs Mommy Friends  (Read 2531 times)

Offline morganbartel

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Wanted: Special Needs Mommy Friends
« on: Mar 22, 2014 @ 02:32 PM »
Okay so if you are on this page you obviously have a loved one with special needs. I'm floored that there aren't many topics on our forum. I wanted to encourage everyone to share their blogs and a bit about their special family. One of the things that has helped me through my first year with my little guy is the support from others who know what it's like to not live "normally". Normal is objective to me. My normal has always been raising a son with a life threatening genetic disorder.

I'll start this party :) My name is Morgan and I blog over at bartelchronicles.com about my families journey living with MCADD. MCADD is a genetic disorder where your body is unable to use stored fats for energy. My son's only source of energy is the food that he eats. Once he uses it up his body starts draining it's glucose stores until eventually his body shuts down. Thankfully newborn screening helped us identify this disorder and his prognosis is very good. My son has no major restrictions except he cannot fast and that if he cannot keep food down or refuses to eat he has to be hospitalized. He does have to follow a specific diet, but it's no big deal knowing that it's keeping him alive.

I'd love to hear from more of you! Can't wait to expand this forum :)



Offline KerryS

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Re: Wanted: Special Needs Mommy Friends
« Reply #1 on: Apr 26, 2014 @ 01:58 AM »
You're not the only one. I'll follow you. :)
Discover a sampling of new ways to strengthen your family at www.myrandomsampler.com.

Offline MuseMama

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Re: Wanted: Special Needs Mommy Friends
« Reply #2 on: Aug 02, 2014 @ 04:43 PM »
I've never heard of that before!  I'm so glad that newborn screening was able to help you so early. 

I have a 17 year old and an 11 year old with Asperger's (and maybe the 10 year old.  There's something going on with her, educationally, but we don't have any kind of diagnosis yet.  I have an 8 year old who has Autism Spectrum Disorder, and it affects his activities of daily living pretty significantly.  I lost a daughter nine years ago to a rare condition that affected her brain.  I thought nothing like that would ever happen again, but my last baby was diagnosed with a Neural Tube Defect called an Encephalocele, in utero.  He's had a couple of brain surgeries, and ongoing treatment for his developmental delays.  He's pretty kick-ass though.  A definite fighter. 

I'd love to help expand this forum!  Especially as a blogger, I want mothers facing the same diagnoses, to be able to find me.  Encephalocele is fairly rare, and there are a few of us out there, but not many.  It's a terrifying diagnosis, since it's usually fatal.  I'd love to pay it forward in terms of support for those not as far along in the journey as I am.
Me: 37 Him: 46
Our army for the zombie apocalypse:
Bonus Kid (aka best step-daughter ever) Karina 21, DS Reagan 17, DD Piper 12, DD Bridget 10, DD Sarah (watching over us), DS Ciaran 8, DS Quinn 6, DS Brennan 4, DS Liam 3

Writing about my crazy tribe @ http://musemama.blogspot.com

Offline smedisky

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Re: Wanted: Special Needs Mommy Friends
« Reply #3 on: Aug 16, 2014 @ 11:14 AM »
I get it. And I agree, there's entirely too little support out there for mommies (and daddies!) of kiddos with special needs.
I know because I'm one of them, too. ;)

My youngest son is adopted. I share that right off the bat becausefranklywe didn't know whether his special needs were due to the neglect and abuse he experienced before the adoption or due to genetics. Unfortunately, we now know it's a combination of both.

In (very) short, my son struggles with at least one congential amino acid metabolic disorder. (His body can't metabolize protein of any kind. If he ingests too much, it leads to irreversible mental retardation. So he's on a strictly managed diet of 15grams of protein per day. He's also a little person (with genetic markers for about 6 different types of skeletal dysplasia). He has a very low IQ and even now at 8 years old struggles to say intelligible words and more than 2 or 3 words at a time. He's legally blind and has recently lost the ability to toilet independently. (He can't understand his bodies urges to go. So I have him on a set schedule for when to visit the restroom.)

I've had family come right out and say they're too uncomfortable to be around him. I've had (several!) doctors say they simply can't help us anymore. I've had (many!) moments when I felt completely and utterly alone. That's why I've determined to create a better support system and future for our family, myself included. (Hey, if we're not around and healthy ourselves, then who will take care of and love our kids, right?) Personally, I'm trying to lean on my faith more and more each day because I know I can't do this alone. (If you're curious, please do check out my blog in my siggy below! I'd love to connect on FB, too!)

I'm excited and simultaneously relieved to "e-meet" other mommies who are also walking the special needs path with their kiddos. It can be an incredibly isolating and lonely place to be. Here's to finding new hands to hold along the way!  :D
Shannon
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Pursuing and Seeking PEACE
  InvitingPeace.com

Offline myawesomeLCHADkids

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Re: Wanted: Special Needs Mommy Friends
« Reply #4 on: Oct 17, 2014 @ 11:47 AM »
My kids have LCHAD! I started a blog a few months ago, I'd love to link up!! myawesomelchadkids.blogspot.com

Offline minnie.douglas1

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Re: Wanted: Special Needs Mommy Friends
« Reply #5 on: Dec 10, 2014 @ 07:39 AM »
Hi, I'm Minnie, I am a special needs stay at home mommy blogger, and I'd love to be your friend. you may send me messages here or at my email.  dallasdouglas12@gmail.com
Minnie L Douglas

Offline Multiplying Memories

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Re: Wanted: Special Needs Mommy Friends
« Reply #6 on: Apr 21, 2016 @ 05:54 AM »
Hello!

I'm also surprised there isn't more post here. My son (one of a twin) was born with Cystic Fibrosis. His body creates too much mucus. He also sweats out too much salt as part of the CF. The doctor told me in the early years of medicine they use to diagnose CF by licking every baby to see if they were salty. He is like a salt lick, lol.

He has to take something with every meal to insure he absorbs enough fat and he needs his lungs pounded to loosen up the mucus. As well as taking steroids and other things.

I understand how tough it can be. My email is dusty_santos@yahoo.com if you want to be friends. I  would be happy to feature advice you (or any mother of special needs kids) have for new moms of special needs on my blog.

Offline Christycowart6

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Re: Wanted: Special Needs Mommy Friends
« Reply #7 on: Jul 10, 2016 @ 12:26 PM »
Hey my name is Christy you can find my blog at lilmamaof2boyz.blogspot.com it's about 3 months old. Anyhow I have 2sons my oldest is 15 and he was diagnosed with crohns disease 3 years ago and we have had a rough time it's a chronic illness.I also have my sweet 5 year old which will begin the process to determine if he is on the spectrum . He is such a sweet little boy  both of my kids are they surprise me each and everyday . I'm glad to see a forum like this cause there have been days that I really needed a place like this.thanks so much
Www.lilmamaof2boyz.blogspot.com
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Offline Somebodys_Mother

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Re: Wanted: Special Needs Mommy Friends
« Reply #8 on: Jul 12, 2016 @ 03:33 PM »
Hey! You should check out http://themighty.com if you are not already familiar with that website. It is a great community.  I contribute posts for them from time to time.
Britt
You're Some Body's Mother
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