Clare123Clare123 LondonCommunity Manager

Welcome (waves)

We're really pleased you've found us. Get to know us better by posting an introduction. 

Tell us a bit about yourself - why are you here and what's going on for you today?



  • JudithJudith Member
    edited January 2017

    I'm Judith, I'm not usually so quick off the mark but I have some peace so am making the most of it.
    I am the Mum of a 10 year old boy who was born extremely prematurely with many problems. He is left with Development delay.
    We moved to deepest darkest Devon when he was 4 and I lost most of my support network when we did so. I have been looking for someone who understands ever since! He's in a small mainstream school and is the first child they've had with a full statement so you can see why I'm feeling a little alone.
    Good luck, let's hope this can become the place you are working towards.

  • Hi. I'm Eugenia in Texas, USA. I have 3 children, a 15 yr old boy, 12 yr old girl, and 10 yr old boy. My youngest was diagnosed with Autism Spectrum around 2, and has epilepsy, weak fine motor skills, developmental delay, and is nonverbal. He was also diagnosed with Coffin-Siris Syndrome, a very rare genetic disorder, 2 years ago. I work long hours and grew up in Singapore where my family, relatives, and best friends live. I've been in Sugar Land, a suburb of Houston, for almost 14 years, but have not established any strong friendships. My husband, and his parents who live with us, are my main support. My only sister lives in Maryland, USA, but can't provide much help since she's so far away.

  • Clare123Clare123 LondonCommunity Manager

    Welcome Eugenia, good to have you on board. Thank you so much for getting involved!

  • Hello Eugenia. Good to see you. If you're ever passing my way, pop in for coffee!!!

  • Hi I'm Jayne mum to my 12 year old son who was diagnosed with adhd,Tourette's,dyslexia,anxiety and OCD at 9 years old,myself and my partner of 20 years live in a small town in Nottinghamshire.
    We are quite isolated in that my parents have recently passed and my partners mother lives in Spain,and have no contact with other family members so as you can imagine it can be very difficult,this is why I think online support is vital and is a lifeline to many families when local community support and family support isn't available.
    I'm looking forward to meeting you all x
  • Hi I'm Jodie, I have 3 children and we all have a rare genetic condition.

  • Hello Jayne and Jodie.

    I understand completely Jayne.

  • Hi, I live in South Wales. My son is 12 and has tic disorder and slight OCD. He is currently going through the process of diagnosis for ADHD or ASD. I completely understand how you feel Jayne. It is difficult finding other people who understand. I am here for any of you who need a friendly ear and support.

  • edited December 2016

    Hi Everyone,

    Lovely to hear a little about everyone's lives. Seems like we all have a lot to juggle! I'm Lynne, married to Kevin & mum of two teenagers. Rachel is 18, almost 19 (gulp! where did that time go?!). She has anxiety and depression, and has always needed extra support along the lines of undiagnosed Aspergers. (we chose not to go ahead with an assessment). My son Rory is 14. He has autism, and is classed as severe. He also has other complex needs including hypermobility, hyperacusis,sensory processing disorder, PICA, Anxiety and food intolerances. He has a weak immune system and is on prophylactic antibiotics all year round, and over the last year when he has been unwell for prolonged period of time, he has developed motor tics on his face/neck, and heightened OCD's which subside once the infection has been brought back under control. (Personally im sure he has undiagnosed PANDAS or PANS, but I cant obtain a diagnosis as they are hesitant to do so here - some medics are still on the fence as to whether it actually exists...A bit like they were in the past regarding M.E...). I run a local online support group on facebook, for parents who have a child with any disability, which has almost 400 parents which is a passion of mine for the last 6yrs - I really enjoy it. I am unable to seek employment due to both Rory's health needs, and my own disability (Arthritis), so the group is my way of 'giving back' I guess. I know how lonely it felt when I was going through the diagnosis stage with Rory, and with all Rachel's needs to cope with, and wanted to try to ensure that other parents feel they have a safe informative environment to come to where others understand. Im also recently involved with the formation of a new parent forum in my area in Scotland, which is exciting too.
    Anyway - enough of me! Looking forward to this, and so pleased to 'meet' you all. :smile:

  • Clare123Clare123 LondonCommunity Manager

    Welcome very_busy_lady, chocolate26, Jodie and Jayne. I'm about to head off to bed but I thought I'd just pop in and say hello - so nice to see people getting to know each other already. And thanks again - it sounds like everyone has so much on their plates already - it's so kind that people are taking the time to help us too. Hope everyone manages to get some sleep tonight and has at least something relaxing planned for the weekend :)

  • Hi All
    I'm Frances mother of a beautiful 21 year old young man who faces major challenges with bi polar disorder he has a severe learning disability Autistic traits/ Anxiety, and has been sectioned 3 times and been a victim of abuse by a member of staff in an ATU and assaulted by a patient in another.I feel fortunate that
    I have good support from family friends and professional.I Belong to several online forums and facebook groups the most important being stronger together.I am signed up to a local online forum which I feel is valuable but am always surprised that so few people access it, knowledge has been so powerful and over many years I have found contact a family resources really useful so delighted to be involved.
  • Hi I am Janice mum to 2 kids 18 and 15 both boys. The 18 year old has severe autism with global delay. He attends a special school for autism and is on his last year. I am my sons main carer and he keeps me very busy. My other son has no addidional needs and is in year 10. Looking forward to getting to know you all

  • Silly me forgot to tell you where I live. I live in north wales.

  • mumof4mumof4 Member
    edited December 2016
    Hi I'm ellie from Brighton I am a mum of 4 my youngest is 3yrs old has a Chromosome deletion has rare syndrome bad eye sight wears hearing aids has global developmental delay seizures the list goes on good to be here x
  • Hey everyone. My name is Lena and I am a mum of a 3 and a half year old and 20 month old. Our youngest, has a rare eye condition called Micropthalmia which she was born with. we are still uncertain as to whether she has any sight in this eye and have had quite a difficult 18 months coming to terms and adjusting to this.
    As with everyone with small children life is busy and tiring but very rewarding.
    I am excited to get involved with the contact a family website and to make some good connections and a support network with other families. We really enjoy reading the magazine and find it such a worthy and worthwhile cause :o)

  • Hi sorry can't find the consultation bit anywhere ?
  • Hi all I'm Rachel from sunny Yorkshire and have 2 teen boys. My eldest has a rare genetic disorder (Gillespie syndrome) which causes severe physical and learning disabilities. I'm not a social media user and a bit nervous about this but hope this will encourage me to get some support and to encourage others ,if I can understand Which buttons to press! So far so good Clare

  • Clare123Clare123 LondonCommunity Manager

    Hi @mumof4 - I just wanted to get in touch to let you know that the first part of the consultation will be posted on Monday - then you'll be able to see if on the community homepage. I'll also drop you an email to let you know when it's up - with a link in too so you can go straight there!

    Hi to everyone else too - great to see you here! Glad it's all making sense so far @jaffacake - and great to hear you enjoy the contact a family magazine @Mum2Two :)

  • Hi, I'm Janey, mum to two girls aged 17 and 13. My youngest has duplicate areas of Chromosome 17 known as Potocki Lupski syndrome, which causes developmental delay, low muscle tone, poor feeding and many other issues. I worked in media for the BBC, but after having Nina decided I had to step back and prioritise her needs. We've come a long way from those early, dark days of her diagnosis and my experience saw me re-train as a Secondary School teacher.
    I'm here to offer support to other families trying to find a way through the minefield that comes with having a child diagnosed with SEN, whether that's offering an ear when you feel overwhelmed or offering advice on navigating issues with school etc.
    Happy Sunday folks x

  • Hi everyone and lovely to meet you all. I have 3 girls, soon to be 18 years old Annabel, Sophie soon to be 9 and Lucy just turned 6. Lucy was diagnosed with very rare condition at 4 months old, infantile spasms. She also has a heart defect and last year diagnosed as autistic. We still don't know what caused the Infantile Spasms but the doctors definitely think its genetic. Future remains unclear and we take each day as it comes. I have used a few support groups in the past but I do feel improvements can be made. Look forward to being part of this community and help where I can. Oh I'm also in Sunny Yorkshire , Bradford.

  • Hello everyone - I am mum to a young man with Juvenile Batten disease. He developed normally until he was around 7 years old and then developed an eye problem. He was registered blind shortly afterwards. The following five years were very difficult as my son started to lose abilities and, when seizures started he was tested for JNCL (Juvenile Neuronal Ceroid Lipofuscinosis - otherwise known as Juvenile Batten disease). This is a degenerative disease that leads to early death. He was diagnosed with JNCL at twelve years old and, at that time, he was still pretty normal apart from his sight problem and seizures. I found the challenge of looking after him whilst, at the same time, trying to come to terms with the fact that this disease is terminal and there was nothing I could do to save him was the must difficult thing I have ever done. Sixteen years have passed since then and there has been a slow decline. Such a lot has happened during that period of time - where to start. Well I won't start just yet - as this is just an introduction ..... I welcome the opportunity to share my thoughts and experiences.

  • Clare123Clare123 LondonCommunity Manager

    Hi @Janey1, @Clairlouise71 and @heather - thanks so much for saying hello (puts the kettle on)

    I'll be up early tomorrow to post the consultation questions - but I'll email you to let you know when they are available!

    Have a good evening everyone,

  • Hello, another Yorkshire bod here. I live in York with Hubby and two kids. The eldest, Joseph is nearly 7 and has no issues. But after assessments for development delay, Danny was diagnosed last July with mucopolysaccharidosis type II (Hunter Syndrome) which causes various problems. He is now nearly 5 and having weekly enzyme replacement treatments. He's also on a clinical trial in Manchester. It's been a tough time, but I'm a very strong believer in online communities for support - when the diagnosis is a rare one, it's the best way to access those who are going through the same thing as we're so thinly spread.

  • Hi everyone, I'm Kathy and although originally from Yorkshire I have lived in Glasgow for 26 years with my partner - 31 yrs but never managed the wedding lol - and our 4 boys aged 24, 13, 11 and 10. the eldest has a complex learning disability and I am his carer whilst also taking a full time community development degree. Our 13 year old is currently a non attender at school and is undergoing ASD assessment. I believe he may be PDA but difficult to be assessed for this. I also am admin on a few facebook groups offering support to parents and also one which is particularly for Scottish based carers. I am immensely proud of the parental support groups as between 4 groups there are over 70k members and 3 of the groups are named in an NHS booklet provided to parents who are awaiting or have recently had an ASD diagnosis for their child.
    When my son was young I was very isolated and this affected the decisions I took through lack of knowledge and support. I am looking forward to hearing more from everyone and finding out more about the consultation.

  • Hi everyone, I'm Janie & I live in Bath. I have 3 sons. My 23 yo has Chronic Fatigue Syndrome, my 21 yo has NF1 with associated dyspraxia, ASD/SPD/ADHD, optic nerve tumour & Chiari Malformation (brain malformation) and my 12 yo with global development delay, severe dyspraxia, expressive language disorder, Juvenile Idiopathic Arthritis & Occipital Neuralgia. I work for a Children's Centre plus I run a parent's group & FB group for parents from my youngest son's special school :smile:

  • Hi everyone, I'm Heidi and I've always lived on the Isle of Wight. I have 3 beautiful children all of whom have disabilities. My eldest has Down Syndrome, Autism, heart, lung and bowel conditions, my middle child is at a private SALT school and also has ASD and ADHD and my youngest a girl is home educated and has ASD and Anxiety (life is never boring LOL) I am very proud of the support groups I help admin between them is 60,000 members and 3 of them are named in a NHS booklet provided for them waiting for ASD diagnosis. I also admin a ASD support group as two of my children have ASD as there primary diagnosis.
    My eldest is now 21 when he was first born there was no support available so it's become my passion helping others on there journeys and making sure they know what help is available to them.
    Looking forward to chatting with you all xx

  • Hello to everyone.
    I am Lynne, and I live in the East Riding of Yorkshire. I was born and raised in the area but moved to the States when I was 20. I moved back to the UK almost 5 years ago with my son (he was born in the US). As a result of complications during my pregnancy and delivery my son was deprived of oxygen and was born with Cerebral Palsy and a myriad of medical complications and other challenges. The basics of his diagnosis associated with CP are bilateral hip dysplasia, leg weakness, spacticity, velocity induced dystonia, developmental delay. He also has severe Attention Deficit Disorder and is borderline on the Autism scale. I like to think more that he is a little quirky and it is all part of his charm and personality. My son suffer acute anxiety and stress induced Night Terrors (these are not just nightmares but fully involved physically and emotional events). More recently he has had some heart related concerns; atrilfibrilation, and when we were at the hospital and they did there associated blood tests we found out he was in the early stages of liver failure and his blood was not clotting in the way it should. The doctors are also now testing him for nocturnal seizures and absent seizures which I am not concerned about ... they are covering on the night terrors but if they spent a night here they would know it was not a seizure ... as for the absent seizures which was highlighted by the College my son attended .... my son simply told them "nope not a seizure ... simply absent and not paying attention!"
    Just to add a little spice to life and keep things interesting I have been a single mother since my son was 6 months old. When he was 2 I was diagnosed with Primary Progressive Multiple Sclerosis and recently my Thyroid has packed in.
    My son never ceases to amaze me every day of his life. He knows no limitations and will accept that he cannot do everything his peers can do, he just sometimes needs a little longer, a little more patience and lots of support. I would not wish my diagnosis on anyone but my son shows me every day that it is merely a blip and that if he can do I can do it and vice versa.
    Sorry if that was a little bit too much information (I do have a tendency to type War and Peace once I get going). I am looking forward to getting to know all of you and learning from your experiences.
    Thank you Clare for the opportunity to be involved.
    Lynne x

  • Clare123Clare123 LondonCommunity Manager

    Hi @SallyM, @Kathy @heidijemma @Janie and @LynneK and a huge welcome! (@LynneK - it's great to hear about you and your son - it's never too much info!). Today's questions are now live for whenever you're ready to look at them!


  • Hello
    I'm Cari and I live in South Wales.
    I have 3 birth children, had lots of foster children and one adoptive son.
    My oldest had aspergers, he'd be 31 now but unfortunately he died in a fire 4 yrs ago, when he was young there was no support and no diagnosis (diagnosed at 15) he did go on to live independently and was doing really well when he died.
    I have since been involved in lots of online support groups and found lots of answers, good friends and it certainly helped with the isolation.
    My 4 yr old had a very difficult birth and considering it was touch and go many times he's doing really well. He is deaf, has epilepsy, mild global delay and other issues that I'm struggling to get the bottom which leaves him tired and frustrated and struggling to eat without choking. He doesn't go to school yet at I am struggling to get the support he needs.
    I'm looking forward to chatting with everyone and helping to make a new successful online support.

  • Hi everyone, I've not read the other comments yet, I'll go back and read them once I've posted, I just wanted to say hello. I'm Julie, I live in Bolton and I found Contact A Family because my daughter has global developmental delay which later led to us getting a diagnosis of a rare genetic condition called Weaver Syndrome. I set up and run a facebook group for parents of children with Global Developmental Delay, which is a very popular and friendly group and when I got the email about this forum I was interested as I like to share experiences and more importantly make other parents feel like they're not alone. That's how I felt initially when it was first realised that my daughter had difficulties so I want to reach out to others and be a friendly ear. That's my goal. I'll go and read all comments now I've got a coffee handy. :) Nice to meet you all!

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