Is NDpae impacting your life?
An Invisible, Life-Long Disability.
Who are ÉNDpae?
ÉNDpae is an all-island parents’ and carers’ support group dedicated to supporting people affected by NDpae and their families. It also promotes education for professionals and public awareness of the condition.
Join us in a no blame, no shame, no stigma support group for Parents, Carers and others affected by NDpae. We meet regularly in person, offer online meetings for those unable to travel and enjoy social gatherings for our children to get to know each other.
What is NDpae?
NDpae is a life-long disorder caused by alcohol interfering with the development of the foetal brain; this is also known as Foetal Alcohol Spectrum Disorder (FASD).
Prenatal alcohol exposure (pae) can cause a wide range of medical conditions in children. These do not diminish with time, they are life-long.
NDpae in a Nutshell
- NDpae is also known as Foetal Alcohol Spectrum Disorder (FASD)
- NDpae is a neurodevelopmental disorder with effects caused by alcohol
- NDpae is a spectrum of life-long brain-related and general health effects caused by the consumption of alcohol during pregnancy
- It is one of the leading causes of mental health conditions
- Most people with NDpae score higher on IQ tests than they can function in the real world – their Adaptive Functioning is compromised
- NDpae causes serious social and behavioural differences
- Each year, in Ireland, at least 620 babies are born with NDpae
- During Pregnancy, less alcohol is better, NONE IS BEST; there is no known safe limit.
- Alcohol damages more babies than any other drug
- Diagnostic terms which sit under the same umbrella as NDpae include:
- Foetal Alcohol Syndrome (FAS)
- Partial Foetal Alcohol Syndrome (PFAS)
- Alcohol Related Neurodevelopmental Disorder (ARND)
- Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (ND-PAE)
- Alcohol-Related Birth Defects (ARBD)
- Many children with NDpae also have diagnoses for other conditions such as Attention Deficit Hyperactivity Disorder (ADHD), Oppositional Defiant Disorder (ODD), and Autism Spectrum Disorder (ASD).
NB – ‘Fetal’ is the international spelling. ‘Foetal’ is the spelling most used in Ireland and the United Kingdom.
Living with NDPae
Longstanding research shows that people with this condition are likely to face serious difficulties in their journey through life if they have not had the correct support services:
• Orderly, organised and sequential
• Many opportunities for links and interconnections
• Inconsistent growth, disorganised, gaps and clusters • Clusters can appear as areas of strength. Eg. in art, music, etc. These may contribute to overall spiky developmental profiles
Uneven Developmental Profiles
These diagrams illustrates how people with NDpae present with uneven development. Every person will be different but this is a typical profile.
Things Young People with NDpae Say…
- “I learn best when you show me how rather than tell me.”
- “It’s like my brain wants me to see everything in the room and hear every sound, all at once.”
- “I probably won’t hear what the teacher is saying because I’m hearing someone tap their pencil or people in the corridor or a dog outside or even the heater.”
- “I can understand something one day and not, the next. It can come back another day. It’s crazy for everyone, especially me and very frustrating.”
- “My brain is wired differently so things can just slip in and out of it easily.”
- “I have no answers why I do what I do and I can get very impatient but if you ask me something, I’ll make my best guess.”
- “If my schedule gets mixed up, I just shut down. My brain freezes.”
Things Their Parents Say…
- One of our first clues that there was something unusual going on was when we realized she simply didn’t learn from experience, that “consequences” didn’t work.
- The explosive tantrums – some people call them Blow-ups or Melt-downs – are really hard to take. I find it difficult to stay thinking and not reacting, remembering that this is a damaged brain reacting to something it can’t deal with.
- “Listening to music really helps him. These days, after listening to his music, he can talk about what is wrong or what happened.”
- “She has great long term memory but often can’t remember recent things. It makes it hard to help with homework or new things she’s learned at home.”
- “I worry about him being alone – people often don’t want to play with him.”
- “She loves being creative but it sometimes drives me crazy when she makes such a mess.”
- “Until we learned we weren’t the only family dealing with this, we were in a very lonely place. Often we felt hopeless.”
- “Some of the stories she can tell are brilliant. I’d nearly believe them.”
- “I’ve recently heard that research is showing brain resiliency means some recovery is possible.”
- “We see the round the clock picture. Everyone outside the home sees the best-out takes and can’t understand the challenges to a “normal” life.”
- My most useful mantra is “Can’t, not Won’t.”
Children have a right to have their needs met, and parents deserve support to meet those needs.
Supports required by those with NDpae may involve professionals such as:
People with NDpae will have mental health problems, often receiving multiple psychiatric diagnoses. It is important that psychiatrists, mental health workers and workers in the educational system and within the legal/justice system fully understand the disabilities of NDpae.
- CAMHS – for mental health support and continued management of ADHD and other conditions.
- Autism Spectrum Services – many of our NDpae children meet the threshold for ASD diagnosis.
- Speech and Language Therapists – social and communication skills.
- Occupational Therapists – for identifying and supporting sensory processes.
- Educational Psychologists or others – to make assessments and give support in school settings.
Our children can have a wide range of medical issues such as epilepsy, heart defects, skeletal issues, compromised immune systems and compromised auditory function, to list but a few.
Ten Magic Keys For Coping
- Use concrete language with your child
- Be consistent, keep to routine
- Think Can’t not Won’t.
- Use repetition – learning takes longer
- Keep things simple
- Be specific
- Have a structure
- Lots of supervision
- Get all the help you can
- Be good to yourself – get rest