It goes without saying that the umbrella of special needs covers such a wide spectrum and we will not be able to cover anything close to everything here. If there is anything that you think should be added to this page, please be in touch (see e-mail link a bit further down).
On this page, we aim to provide information and links to different charities that provide support as well as material parents have shared with us. At the bottom of this page, we have some stories from parents in the group.
If you are a parent of a child with any kind of special needs and would like to get in touch with other parents, please feel free to be in touch and we will try to connect you with others in the group. This would of course be in the strictest of confidence and we would only share what you want us to share when we try to connect you.
As with several other topics, we would like to share parents’ stories on having a child with any kind of special needs in the hope to help others. If you want to get in touch to share your experiences, please email us.
We run a few support groups for parents whose children have speech delay, ADHD/ADD and for ASD. Please email us if you would like to join a support group.
Here is a link to the NHS which you might find helpful.
A number of friends whose children all have very different needs have had help from Maximum Potential in Marylebone.
ADHD & ADD
NHS – ADD
The mum whose story you can find further down on this page, has shared the below information with us.
There’s a website called ADDitudemag.com; you can subscribe to daily emails which cover a wide variety of topics and you can pick and choose what’s appropriate. They have lots of interesting articles on a range of relevant topics and they also offer a podcast with a range of professionals.
Another favourite resource of mine is a podcast called TILT parenting. They discuss a range of topics on parenting neurodiverse kids from ADHD/ADD, ASD, OCD, giftedness, highly sensitive children and emotional regulation issues. They go really in depth on a topic with different professionals and are very solution orientated and positive which I find particularly appealing. They use the umbrella term ‘differently wired’ for all neurodiverse kids as many of them fall under multiple categories/diagnosis which is also helpful.
Auditory Processing Disorder (APD)
NHS – APD
Did you know that many cinemas offer autism friendly screenings? You can read more about it on the Dimensions’ website. And if you type in ‘autism friendly cinema screenings’ on Google, you will find lots of information.
Sensory Processing Disorder (SPD)
Speech & Language Delay
Speech and language therapist Nicole Zubaida has helped many families in NW8-mums.
One of the things that our friends who have children with complex needs tell me, is how hard it can be to find a babysitter. KidSitter have babysitters on their books who are used to working with children with special needs.
Magus Education frequently helps families whose children have complex needs.
Exercise & Mindfulness
The Special Yoga Centre which offers yoga therapy for children with special needs.
What It Is Like Living with A Child Who Has Down’s Syndrome – from one our NW8-mums
When our little boy, Darragh, was diagnosed with Down’s Syndrome a week after his birth it felt like our world was falling apart. Darragh was in the NICU at the time and, although we were surrounded by medical experts we had never felt more alone. Discovering that your child has a medical condition is like a bereavement – you grieve for the child you have ‘lost’ and the dreams of playdates, school, university and you worry about the challenges facing you and your child. I think I probably cried for three days and found it impossible to talk to anyone about what had happened.
However, if we had known then what we know now we probably wouldn’t have wasted so much time crying and worrying about things that are so far in the future. Fortunately Darragh does not have any of the heart, lung or digestive conditions that are often associated with Down’s Syndrome so we only have to deal with a developmental delay and minor issues with sight, hearing and the immune system. He is prone to developing chest infections and is at risk of complications with common childhood illnesses so we have to keep a close eye on his general health. It’s true that it takes him a lot longer to master some basic skills but he manages it in his own time so I have learnt to stop worrying about milestones. His speech is delayed but he is picking up new words and signs every day. He still can’t feed himself without assistance but like any little boy, he loves dinosaurs, the swings, books and sausages. He has a tremendous sense of humour and will happily entertain fellow travellers on buses and trains by insisting that they join in with his songs (with appropriate actions).
He has brought us a lot of love and joy and we wouldn’t change him for the world.
After much discussion we decided to try for a second baby. It wasn’t a happy pregnancy as I was constantly worried, despite many tests and much reassurance, that this child could also have some problems. After all, Darragh’s Down’s Syndrome hadn’t been picked up prenatally or at birth. Added to these worries, I was also attending up to six medical appointments a week in various locations as well as carrying out four hours of therapy daily (at least until I was unable to get down on to the floor!). Although our risk of having another child with Down’s Syndrome was no greater than that for anyone else of my age, we decided to have a CVS as early as possible. Finding out the baby was developing normally didn’t really make things any easier. Relief lead to guilt that I was devaluing Darragh’s life by wanting a child without Down’s Syndrome.
Aoife was born in November 2013 and Darragh took to her straightaway. In many ways they are now at the same developmental stage despite having 18 months between them. They both started crawling at the same time. If one learns a new word the other will pick it up within days. We hadn’t experienced a typically developing baby before, so it was something of a shock to see how quickly Aoife learnt to sit and crawl – skills which had involved months of manipulation and physiotherapy for Darragh. He still requires a lot of additional support so this impacts on the amount of time we get to spend with Aoife. She has missed out on a lot of the Mummy and Baby classes, but she greatly enjoys disrupting Darragh’s therapy sessions and goes to all of his specialist playgroups. Darragh will be starting at a mainstream nursery in September which will present us with a whole new range of challenges, but we are confident that he will continue to thrive.
Raising a child with ADHD – A Personal Story by one of our mums
Raising a child with ADHD has been an enormous learning curve. Both a blessing and a challenge.
Hyperactivity is a well understood part of it, but it also comes with complicated sensory, social and emotional issues which are not often discussed.
My son who is now almost 12, doesn’t fit neatly into any box. He is intelligent and articulate but struggles with his schoolwork. He converses fluidly and confidently with adults but can find it difficult to connect with other kids his age. He’s confident in his opinions but sensitive to responses and emotionally fragile. He will give 100% physically to an activity or sport, but he can’t tie his own shoelaces or dress independently.
If I could describe ADHD in one word it would be ‘intensity’. There are only two speeds for a person with ADHD: Zero or One hundred. Never anything in between. For parents, that requires a high level of continual and constant intervention and energy.
Each stage has brought its own challenges for us. At first our main concern was physical danger; he was climbing precariously, impulsively running into roads, never sleeping. Then school age came. Handwriting was a struggle. Sitting still, lining up, not interrupting; all near impossible tasks for my son.
We are now at the wonderful teenage years; if I could describe it in a phrase it would be ‘argumentativeness on steroids’ (see Oppositional Defiance Disorder; a co-morbidity of ADHD). It’s relentlessly exhausting, but there are many strategies and behavioural management techniques which can help with the day to day; and they do help.
If I’m being honest, the hardest part of parenting a child with ADHD for me has been looking around and thinking ‘Is this my fault?’. It’s hard not to feel like you’re failing a lot of the time. I’ve read every book, article and blog – I understand this is a condition – but I still ask myself this question.
Then, just when I’m really struggling, my son will say something so deeply profound, make an observation which is so admirably astute or carry out an action so genuinely and altruistically full of love and kindness and I’ll be reminded that whilst some negative behaviours may have no limits and regulation, the same is true of his positive behaviours too, and that is so beautiful. I remember what a privilege it is to witness that.
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