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06 December 2014 12:08 PM # 16

bdwilliams12

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Joined: 2014-12-06 Posts: 2
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Heya,
I’m Bethan. :)
We are from Wales - I have three children, 6,4 and 2 and Anest (2) is a SWAN (syndrome without a name) but she is improving all the time, admittedly very slowly! 

xx

06 December 2014 10:24 PM # 17

the monkey puzzler

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Joined: 2014-10-14 Posts: 32
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bdwilliams12 - 06 December 2014 12:08 PM

Heya,
I’m Bethan. :)
We are from Wales - I have three children, 6,4 and 2 and Anest (2) is a SWAN (syndrome without a name) but she is improving all the time, admittedly very slowly! 

xx

Hi Bethan

Our little boy is a also a SWAN, he’s 6. He has no speech or
mobility. We’ve been through all the tests and now on DDD project and still hoping for answers.

Look forward to heading more about Anest.

 

08 December 2014 02:14 PM # 18

bdwilliams12

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the monkey puzzler - 06 December 2014 10:24 PM
bdwilliams12 - 06 December 2014 12:08 PM


Hi Bethan

Our little boy is a also a SWAN, he’s 6. He has no speech or
mobility. We’ve been through all the tests and now on DDD project and still hoping for answers.

Look forward to heading more about Anest.

 


Hello :) 
Are you on the Swan facebook page?  I am but don’t make much of a contribution - I shoud really! 
We are on the DDD project too.  I dont know if they will ever find anything though! xx

 

08 December 2014 08:24 PM # 19

Twincess

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Joined: 2014-12-02 Posts: 1
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Hi. We are Abigail and Isobel. Identical twins from Lancashire England. We both have Downs Syndrome but it doesn’t stop us living life to the max. We have great family and friends and love breaking down barriers xx

08 December 2014 10:10 PM # 20

jojo2202

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Joined: 2014-12-07 Posts: 1
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Hi we live in Bolton England. I have three children a girl aged 6 and 2 yr old boy girl twins. Thomas and Mia were born at 24 weeks and after a bleed on the brain Thomas has hydrocephalus cerebal palsy cortical visual impairment and some hearing loss. He is the happiest most sociable little boy and enjoys attending a special school nursery where he accesses hydrotherapy, move and sensology. He loves it and is making slow but steady progress. Looking forward to hearing more from you all at firefly
Jo x

09 December 2014 04:25 AM # 21

Lyndsay

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Joined: 2014-11-05 Posts: 2
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Hi everyone!
My family and I are from Denmark. I’m married and have two beautiful boys, Connor is 17 and is known as our gentle giant, he is a wonderful big brother. Our little Viking is Bjørn, he is 10 years old and has the most beautiful personality. Bjørn was born premature and as a result suffered brain damage and has cerebral palsy. I’m originally from the UK, but grew up in South Africa, my husband is from Denmark. We decided 7 years ago to move our family to Denmark as we felt Bjørn would get better care here than in South Africa. I am so greatfull to this country and all the help they have given to Bjørn and our family. I love the firefly garden as I don’t feel so alone and can share and discover what other parents are going through. ☺️

09 December 2014 04:18 PM # 22

Justine666uk

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Joined: 2014-12-02 Posts: 3
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Hi my names Justine we are based Weston super mare uk my my eldest son Oran has myoclonic astatic epilepsy he has over 100 seizures a day we were diagnosed after are first seizure in March this year everything was normal before that ! We are a 4 generation family of childhood epilepsy with over 80% of us having some sort of epilepsy in childhood . I’m a paediatric childrens nurse and was a neuro nurse for years (ironic) I’m just about to give work up as Oran needs a full time mummy and carer we live with my husband and my younger son

09 December 2014 04:55 PM # 23

the monkey puzzler

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Joined: 2014-10-14 Posts: 32
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Hi again bdwilliams12 - we were on SWAN a while ago, but never really been that involved - bit like yourself!

Hello and welcome also to Twincess, JoJo, Lyndsay and Justine – look forward to seeing you all on here in the future!

09 December 2014 05:28 PM # 24

lynnelashes

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Joined: 2014-11-16 Posts: 1
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Hi to all! My husband and i have one child, our little boy is two, he is currently undiagnosed, does not walk or talk and has epilepsy.  He is a beautiful boy (am probably biased) and loves music. He can be an irritable child and hard to entertain but when he does smile and laugh he melts my heart. We r in Belfast.  :)

09 December 2014 06:36 PM # 25

AlwaysRunning

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Joined: 2014-10-10 Posts: 270
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It’s been awhile since I visited this thread. Lovely to see so many more intros. Looking forward to getting to know you an your families.

10 December 2014 01:44 PM # 26

Julie

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Joined: 2014-10-10 Posts: 38
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Hi everyone, I am a mum to twins, 3 years old, from Wilmslow Cheshire, my daughter has quad CP, because of this she is unable to sit, crawl or walk unaided but has a smile that could melt any heart!!! She adores her twin brother and is full of determination, she amazes me every day.  Looking forward to talking to you all and picking your brains!!

12 December 2014 04:13 AM # 27

MommyLovesJ

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Joined: 2014-11-07 Posts: 12
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Hey everyone, my name is Diana and I have a 2yr. old son named Joel and we live in Las Vegas! My son had his food get stuck in his airway at 11mnths. He went into respiratory and cardiac arrest and this tremendously affected him. His diagnostic is Hypoxic Ischemic Encephalopathy which means lack of oxygen to the brain. He is Gtube fed and breathes through a trach. Joel does not walk nor crawl nor sits up on his own, YET! However, he is a very strong-willed little boy and is currently starting to drive a powered wheelchair. We thank God everyday for bringing our baby back to life; he truly is our miracle baby<3

19 December 2014 12:31 PM # 28

Sjbmeyers

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Joined: 2014-10-18 Posts: 1
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Hi everyone. My name is Stacy. I have a 23 year old daughter (she’ll be 14 Christmas day) and 5 year old twins boy and girl. At 9 montha old my son was diagnosed with spastic diplegia Cerebral Palsy. With lost of speech therapy, OT, PT, he is now walking with a walker. He’s smart and sensitive and has an overall positive attitude, but there is not a day that goes by where guilt eats me alive. He’s now at the age where he realizes he’s not like other kids. The other day he asked me why he couldn’t walk and run like the other kids. I immediate felt my heart breaking again. I do everything I can to make sure he has as much of a normal life as he can. To his twin sister it seems like he gets too much of my attention and I can see the jealousy. Sometimes she can be the sweetest by helping me help him. Other times all she wants to do is fight with him.I assume this is normal behavior. One more thing, if anyone has any ideas on how to potty train him pleas send them to me. I waited too long. I know he knows what to do. I think he feels it’s too much work and is easier to go in his doaper.

10 February 2015 09:09 PM # 29

angel

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Joined: 2015-01-29 Posts: 1
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Hi everyone!nice to be here with you all:)
I am Aggeliki mother of Geronimo 2yrs and 9mths old and Elmo 7months old. We are currently living in Freiburg, Germany. I am Greek and Nikos my husband is German. We moved here 1.5 yrs ago. A couple months ago Elmo was still born and is now severely brain damaged. Extremely sweet looking with very less contact to his surroundings he is drinking and eating although not perfect resulting in a small particles in his lungs and coughing. Excessive crying and temperature regulation problems are our everyday and every night challenges. We are constantly in and out of the Clinic searching to find a stability.
I have resently come to accept that our only stability is Elmo’s instability.
Geronimo is very creative in finding ways to have contact with his brother like putting his nose in Elmo’s mouth and feel Elmo’s sucking as well as talking to him and provoking in any way he can his reaction. The time I have with both of them when Elmo is calm is a time I feel very grateful for. I wish, hope and aim for the best for Elmo in any case but my primary goal is for as all to have a calm and happy family life all together as much as possible.
The prayer of serenity is what I often recall in our current situation and what keeps me going in what I experience as an ongoing race.
   
God, grant me the serenity to accept the things I cannot change,
      The courage to change the things I can,
      And the wisdom to know the difference.

sending my love and wishing us all strength and plenty moments of joy

10 February 2015 10:31 PM # 30

sarahbrisdion

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Joined: 2015-02-10 Posts: 32
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Hi everyone. I’ve just joined tonight. My little man is 4 - Hadley. Twin to Erica. He has CP spastic diplegia/quad - docs can’t quite decide. Most likely due to severe prematurity.  He is super clever and obsessed by trains. This is him on the firefly friends site (LINK below) if anyone wants a bit more detail. We live in the New Forest, UK.

http://www.fireflyfriends.com/stories/hadleys-story-goto-special-needs-support-seat

Looking forward to being part of this community. Think it’s great!

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