Special Needs
"Lurkers" please come in
I hate that word! Can we use "Silent Partners" instead?
I am pleading to all of you that are worried that you might not
belong here to introduce yourselves. There must be something that
drew you to that "Special Needs" tab.
There is nothing wrong with getting a feel for a place before sharing
personal info but this board can only get better with new members!
This discussion has been closed.
Re: "Lurkers" please come in
My 11.5 month old son was born after a perfect pregnancy and seemingly harmless labor and delivery. About 4 hours or so after birth he started to have frequent apnea spells ( he went to the nursery to be cleaned and the nurse looked over and he was grey). Noah was taken to the NICU as apnea in a full term infant is not normal. A CAT scan was done which showed his brain was severely swollen ( you couldn't see the ventricles), an EEG done later that night showed 2 areas of seizure activity ( only on EEG, never outward seizures).
We were given a very scary prognosis, since labor and delivery was without apparent?incident??they thought it could be a genetic ( metabolic) issue, or another genetic flaw. Intensive metabolic testing was done- it was?completely?normal.
Currently the thought by docs was that Noah suffered some sort of transient insult, probably hypoxic at some point during labor.
He is a MIRACLE, he is growing, thriving, and developing 100% NORMAL. I am blessed to be his mommy.
Noah does not have special needs but I like to check in on your mommies- for the first months of his life I did not know what to expect and I was given some scary possibilities. ?
I lurk because I have a sister with Down syndrome and my family is extremely involved in the Down syndrome community.
I am also so amazed by what you women go through on a daily basis and how blessed my family is that my sister is a healthy 10yr old with Down's. Sometimes people can't always see it that way....
**Edited: I also just got diagnosed with Celiac disease**
I lurk some. DS has torticollis and severe reflux and is currently in physical therapy twice a week to work on his stiffness and limited mobility and neck tilt. They think that the reflux is causing him some gross motor delays. We're hoping his muscle stiffness is due to the reflux and torticollis, but we haven't ruled out other causes.
I don't normally post because our son's issues are relatively minor in the greater scheme of things, but I still like to see what y'all have to say about OT and PT, etc., since y'all have more experience with this kind of stuff than most moms.
"I stammered, unable to form a coherent thought because I have a vagina."
I mostly lurk (have only posted a couple of times). ?I have a daughter with celiac disease (and another that I'm pretty sure is about to be diagnosed). ?I don't really have a lot to add to the discussions about delays since DD's were very minor.?
I am here because ds has milk, soy, beef, pork and maybe corn allergies. He also has a bacterial infection called c-diff which may have caused some severe ulcerations throughout his intestines and colon area. This needs to be cleared up before we find any other gi problems he has going on ...
I lurk not becuase I have a special needs baby but because I was one. At nine monthes old i started having seizures. My first seizure lasted over 45 mins and left me paralized on the right side of my body for 3 days. I stayed on seizure meds until i was 5. When i was 12 i had another grand mal seizure. During an EEG i had an aura (for me a funny feeling in my stomach) at the same time the EEG recorded me having a seizure. It turn out i had been having seizures for years but no one knew. At 19 I had brain surgery done to remove my right hippocampus (the focal point for my seizures.) Since then I have been seizure free (8+ years). Two years after surgury i was able to stop all seizure meds.
As a result the prolonged seizure, I have a limited short term memory. My school didnt reconize my learning disability until i was in 11th grade. While school was very challanging for me, I was able to graduate from HS and College and now work as a IT specialist for a large company. I hope i can provide information and hope to other moms whos child also suffers from seizures.
I lurk for multiple reasons. I love seeing the love you all have for your babies. My DH and I met 3 months after his DD died, he was not married to his DD's Momma. She was born with CDLS or Cornelia D'Lange Syndrome. She was his light and his life and he still misses her fiercely 6 years after she passed away, and of course he always will. She did not die from her condition her cause of death is a long sad story due to medical negligence. I like to think of myself as a bonus Mommy to an angel baby. We are expecting our first baby together due Christmas Day another little girl. We did run multiple test to see if this baby will have CDLS (not "supposed" to be genetic) but it is not easy to test for.
I'm just now finding this board... I need to bookmark it!
I teach swim lessons part time for a bunch of special needs kids; one with DS, several with autism, one with sensory integration disorder, one with Turner's, and another with something too long for me to remember (
I'm also on the steering committee for my county's Special Olympics.
I'm interested in hearing stories and getting more places to do research!
I lurk because I am a medical student with an interest in pediatrics, especially neonatology. I love seeing your babies, and learning about your journeys and perspectives.
This is the second time I've been on your board as a "lurker." ?I have taken a special interest in pediatrics and prenatal moms (I'll earn my ?D.C. in December) and I have taken on some patients who are special needs kids (they've been my most rewarding, by far). ?I like to see what your concerns as moms are...b/c a lot of times I notice that the moms are timid about being honest (at first) with their thought and concerns. ?I'm not a mother and I guess that might be a factor. ?I just want to help these kiddos.
My oldest son was diagnosed with respitatory distress at 6 hours old and transferred to a level III NICU in another hospital. It was the scariest time of my life as he was hooked up to a CPAP for 2 days. It was completely unexpected...he was born at 40w5d weighing 8lb10oz. It was later determined I had undaignosed gestational diabetes which led to his underdeveloped lungs. Thankfully he was discharged after only 4 days (I say only now but then it felt like forever) with no lasting complications. He later had torticollis (a result of his NICU stay) which he received physical therapy for. He now is receiving speech therapy through EI as he is 2yrs old and only says a handful of words.
I lurk because I know compared to what everyone else is dealing with my problems are tiny. But it's also nice to know there is an area where other parents know what it's like to not have your child doing everything another child the same age (or younger) does.
I also have a 6.5 month old baby who was born without any complications.
Heather
Natural m/c 3/28/10 5w6d** Natural m/c 9/4/10 5w4d**
BFP: 2/27/12. u/s showed blighted ovum at 9wks Natural m/c started 4/11, cytotec 4/13/12 (at 12 wks). **
First appt with RE 5/7. Testing complete. Dx: luteal phase defect
BFP 10/25/12. u/s on 11/16 confirms heartbeat
I'm an occasional lurker who's here because I'm a disability activist, interested in someday adopting children with special needs, and my PhD research is about published narratives about life with disabilities, but I'm also really interested in how we talk about living with them when nobody is editing us.
Pretty sure that I don't have much to contribute, but I do feel like I learn a lot!
Mother's Day, 2011
I would have been part of this board had our first DD would have survived. She had a congenital heart defect (hlhs) as well as a few other issues. I lurk and hope that someone won't have to go through such a tough defect.
I lurk because I'm not lazy to post or to tried.
Carter has a g feeding tube due to not gaining weight or growing. He is getting his mic-key button 11/6 which is going to be day surgery. We found out he might have something called gyleogen stoage diease, still waiting on the results to see more info on it, waiting stinks. He poops so much better since he got his surgery to fix his anal problem.
I'm a "slient partner" (I love that!) DD had an uncontrollable high fever at 11wks, she was hospitalized and given antibiotics. It was a kidney infection, the bacteria that caused it was a real nasty one and we were told that it's notorious for causing brain damage. But after many pedis examined her they said she showed no signs of it. Plus the bacteria was never in her bloodstream. Then we had to proceed with a renal u/s and VCUG and she was diagnosed with kidney reflux and is taking a daily antibioitic. Then when she was 5mths she started having a muscle twitch kind of thing (really hard to describe). So we had to re-visit the possibility of brain damage. We had an MRI, EEG, and so much blood work done. Thankfully everything returned as normal! We still have a battle with the kidney reflux and I lurk here to see if anyone else is dealing with it, plus the support here is wonderful and I get teary eyed almost daily from all the love I see on here.
The biggest reason I lurk is there are a few of you that I've met on other boards, and I'm wondering how you all are doing. I must say that it sounds like you're all doing fabulous! The love just radiates off this board
I'm also late posting. Idk what brought me to this board, to be honest. I don't have children, and I don't have anyone in my family with SN (except my dad, he was born with congenital nystagmus, strabismus, and other visual abnormalities -- he had surgery to correct the strabismus but still struggles with congenital nystagmus daily).
I am a social worker and have worked with SN children in the past. Mainly I just come on here to see if there is anyway i can offer support, and I am just amazed at what strong women you all are and what your families must go through on a daily basis. That, and this is one of the only boards i have seen on here that everyone is SO nice to each other, no trolls, no flaming, etc etc.