+ Reply to Thread
Page 4 of 12 FirstFirst ... 23456 ... LastLast
Results 31 to 40 of 111
  1. #31
    Join Date
    May 2009
    Location
    Lismore
    Posts
    9
    Thanks
    0
    Thanked
    0
    Reviews
    0

    Default Finally what I've been looking for!!!

    When I first joined I came on with the intention of making new friends but wanting to speak to other people with SN children and know I'm not alone as thats the way I kinda feel right now not knowing anyone else with SN children, but the large forum was a bit over whelming so this is great!!!! gonna post this b 4 i tel my story as i dont want to write heaps then find it didnt work as im new to this. so hi everyone cant wait to chat to you all

  2. #32
    Join Date
    May 2009
    Location
    Lismore
    Posts
    9
    Thanks
    0
    Thanked
    0
    Reviews
    0

    Default What amazing,strong little people you all have created:)

    Hi my name is Lisa I live in Lismore NSW, I'm 24 and have a wonderful Husband Anthony weve been together since highschool and have 2 beautiful very busy boys.Logan is almost 3 and Blake is 14mnths old, both were hard pregnancies and labours (ceasars with complications). But with having endometriosis we are soo lucky to have two babies soo early in life without help. Logan...I had a retained placenta so never got to breastfeed, he had jaundice and just missed out on the special care nursery thankgod he was also 3 weeks early after preclampsia.he has acid/silent reflux and was lactose intolerant but undiagnosed for the first 5 mnths (that was a nightmare) he had random undiagnosed food allergies which we thought he had grown out of everything till he was alomst 2. he was a lways a difficult child we thought he was just high maintanence. it all started with a speechdelay then it turned into autistic tendanices, sensory procesing disorder, mainly auditiry,tactile,oral input, sensory seeking and avoiding,.he only has an on or off swithch.
    Blake...after 2 premi labours was born by ceasar then the milk allergies and reflux started again i thought we can do this itl b the same but we were wrong it turned out to be milk protein allergies then corn which is maize, malt, dextrose etc etc etc, grass, suncream, soaps body washes ....waiting for more. he has a hearing loss, speech delay, globa dvelopmental delay and behaviours like logan but we have to wait and see if hell grow out of them.
    just had my third operation for the endo so while im recovering thought id love toc hat to other ppl who understand what its like to live with beautiful SN children as when i speak to ny friends and other mothers they say yes i understands but i know they dont really as they can take their children out in public alone,their child sleeps instead of screaming all night,breaking things hurting ppl,they dont have to worry too much bout if what theye at will make thm sick for days. im ranting sorry but finally want someone to tlk to that understanfs as they have been through it
    ps: i have lovely supportive friends but they just dont quite get it.

  3. #33
    Join Date
    Dec 2007
    Location
    South Sydney
    Posts
    812
    Thanks
    0
    Thanked
    2
    Reviews
    0
    Achievements:Topaz Star - 500 posts
    Lisa...pop into sn chat thread and type away!! we are there to listen..xx

  4. #34
    Join Date
    Jun 2007
    Location
    Wakeley,NSW
    Posts
    488
    Thanks
    29
    Thanked
    5
    Reviews
    0
    Hey most of my story you can get throught the link at the bottom of this page..............but heres the short of the long lol.

    I'm a single Mum just of recent and my son Reece is 3 years old and suffered from lack of blood and oxygen to the brain during labour resulting in Hypoxic Ischemic Encephalopathy(damage to the brain and central nervous systems).He also has an absent Septum Pellucidum (missing part of the brain) caused from a rare mutation in the HESx1 gene and in turn causes Septo Optic Dysplasia(under developed optic nerves).He is legally blind has no central vision only periphial sight.He has been given the overall diagnosis of Cerebral Palsy.He also has Global Developemtn delay he cannot walk,talk,crawl,sit,hold,eat etc he basically functions at anywhere between a 1-6 mnth old level.He is currently on NG feeds and in the process of a Gastrostomy.He is also due to have surgery in November for hip dislocation to prevent curvature in the spine and a chronic pain condition.He also has severe sleeping issues and i have spent the last 3 years in sleep deprivation along with him.

    He is a happy little boy at most times but as all of our kids probably do he has his days.I live in fear of him dying but i also live in hope that he will be strong enough to get through it all.He is my everything,my world and without him i wouldn't know what to do.

    My heart goes out to each and every SN parent as it is such a trying time raising our children but its our love for them that makes them who they are cause without us who would love them like we do.

    xoxoxoxoxo

  5. #35
    Join Date
    May 2009
    Location
    Lismore
    Posts
    9
    Thanks
    0
    Thanked
    0
    Reviews
    0

    Default help need advice! :)

    hi i took blake to our new pead today and he feels that blake may follow in logan's footsteps with having similar issues, sensory procesing disorder and autistic tendancies,(blakes only 14mnths so its hard to tell) he feels its hereditary in males. we want more children. wondering what other ppl think and their experiences if one child has those issues is it more likely to have mutiple children with them? blake already shows some auditroy and high pain threshold shut down issues.very late in speech and interaction. any info about it being passed on in familys or experiences would be appreciated

  6. #36
    Join Date
    Jun 2007
    Location
    Wakeley,NSW
    Posts
    488
    Thanks
    29
    Thanked
    5
    Reviews
    0
    Sorry Lisa mum to 2 busy boys but i am unable to tell you if it can be passed on to further children.It might be hereditary as i do have an ex in law who has been blessed with 4 girls and thank god for that as the issues are only passed down to the boys.So i guess what the paed is saying can be possible but im no doctor best thing i would is google it and see what you can find.I would like more children in the furture but as much as i believe most of Reece's issues are due to the hospitals neglegence i do believe it isnt gonna happen again but will take precautions like genetics testing to be safe.Sorry that i couldnt help but i do hope you can find the answers you seek.

    xoxo
    Lea.

  7. #37
    Join Date
    Jul 2007
    Location
    Country Vic, Sth Gippy
    Posts
    2,590
    Thanks
    125
    Thanked
    127
    Reviews
    0
    Achievements:Topaz Star - 500 postsAmber Star - 2,000 posts
    Reading all the replys you mums are all amazing

    I'm new to this section, I am bev I'm a SAHM with 8yr old twin boys, 6week old daughter and my son Bren who has Autism.
    He has only been diagnosed this week so it's still sinking in even though I kind of knew since from about 14mths of age (He will be 2 next week)

    Some days are better then others (as you all can relate too) most are full of bren screaming & head butting the floor & keeping his routine perfect to try & keep him calm.. most days I am exhausted from Bren & my DD.

    I am looking forward to getting to know you wonderful mums & talking which I finds help.

    I also have a group on Facebook for mums with children that have Autism to chat & meet other mums. Here is the link.

    http://www.facebook.com/group.php?gid=89351843307

  8. #38
    Join Date
    May 2009
    Posts
    4
    Thanks
    0
    Thanked
    0
    Reviews
    0
    Hi all, my name is Nicole and my 11 week old daughter Summer was born with Pierre Robin Sequence (small jaw and cleft palate). This caused her to have respiratory and feeding problems. It was a real shock to have a baby with special needs, not being diagnosed during labor. The hardest part was wondering when she would ever be able to come home and I had a hard time being told I could never breast feed.

    However she did come home from hospital after 2 months not needing jaw distraction surgery. Her only issue now is feeding which is done mostly via NG tube and small amount via bottle.

    After reading this thread I feel very lucky that Summer's needs seem small to what all you ladies have been through. So thank you for your posts.

  9. #39
    Join Date
    Jun 2009
    Location
    Brisbane, Queensland
    Posts
    3
    Thanks
    0
    Thanked
    0
    Reviews
    0

    Default About us

    Hi my name is Cheryal , I am a stay at home mum in brisbane, My 2 older boys have grown up and flown the coup 26 and 25 and I have 2 special needs children, TJ is my biological 10 year old (surprise at 35) and Han is my 8 year old special needs Foster daughter.
    Han's Dx is Retts Syndrome - Epilepsy, reflux, in a wheelchair, needs full assistance with everything, non verbal, Gastronomy button feeds and incontinent, attends a special school.
    TJ's Dx is Neuromigrational disorder - Epilepsy, Non verbal, cerebal palsy, microcephaly, Cyst on the brain, Oxygen deprivation at some stage, Incontinent, GORD, Motility issues top and bottom, prolaspsing bowel, Jejunosotmy feeds, Mace procedure with a chait trapdoor button for bowel flushing, Cortical vision impairment, Anxiety disorder, OCD, sleep issues (he doesn't need it but I do), Pain issues, full assistance with day to day cares, but can walk,, that's all I can think of right now.
    I find life with Disabilities is a very lonley existance, my friends all dissapeared and I would love to make new friends and just to be able to chat with other mums that understand would be awesome.
    Thanks for reading my post and I look forward to chatting with you all soon.

  10. #40
    Join Date
    Dec 2006
    Location
    Australia
    Posts
    7,537
    Thanks
    30
    Thanked
    13
    Reviews
    0
    Achievements:Topaz Star - 500 postsAmber Star - 2,000 postsAmethyst Star - 5,000 posts
    Hello everyone that has introduced themselves since I last posted.

    To update DS now also has sensory processing disorder, delays in all areas apart from gross motor (yay!), but his reflux is now well and truely under control so that's a bonus.

    Having a child with SN can be so isolating and that's why these online communities are so valuable I think.

    Welcome!


 

Similar Threads

  1. Replies: 13
    Last Post: 04-04-2012, 10:49

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
FEATURED SUPPORTER
L'il Aussie Prems FoundationAn Australian charity supporting families of premature babies & children. The charity assists families who are at ...
REVIEWS
"Made bed time less anxious"
by Meld85
My Little Heart Whisbear - the Humming Bear reviews ›
"Wonderful natural Aussie made product!"
by Mrstwr
Baby U Goat Milk Moisturiser reviews ›
"Replaced good quality with cheap tight nappies"
by Kris
Coles Comfy Bots Nappies reviews ›