As with some other topics, I would like to share parents’ stories on raising children with special needs. If you want to get in touch to share your experiences, NW8-mums would love to hear from you.
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 I will connect you. Please feel free to send me an e-mail to NW8mums@gmail.com. This would of course be in the strictest of confidence and I would only share what you want me to share with NW8-mums.
Special needs covers such a wide spectrum all of which would be quite difficult to write about. Here is a link to the NHS which you might find helpful.
Autism
Autistica does an amazing job and helps so many children and families.
Most parents probably have some sort of connection with autism whether it is your own child, a friend’s child or a child at nursery or school. The book ‘The Reason I Jump’ has been published here in the UK and the US, and has been talked about on TV and other media. The book is autism seen through the eyes of a Japanese boy who wrote it when he was thirteen years old.
I have came across notes about autism friendly cinema screenings, and here is a link to the website of Dimensions where you can find lots of good information.
Babysitting
One of the things that my friends who have children with various challenges 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 who are autistic to having Down’s Syndrome.
For NEW users, there is a special code NW8MUMS which entitles you to ONE FREE hour.
I have used KidSitter and was very happy. It is the only service I feel comfortable using and it is because I know how stringent their vetting system is.
Down’s Syndrome
One of the NW8-mums is on the committee of this wonderful charity called Downright Excellent.
Education
Abingdon House School – the school now goes from age 5 to age 16 (& potentially 18) and will be doing GCSE, Btec and Asdan (life skills exams). It’s an amazing bespoke small school offering one to one therapy while letting the children take the curriculum at their own pace.
Yoga for Children with Special Needs
Little Buddha Yoga uses yoga as a therapeutic intervention to support the wellbeing of babies and children with special needs. They offer one-to-one special yoga sessions in the child’s home, as well as classes for parents or carers, in St. John’s Wood and surrounding areas.
The special yoga offered by Little Buddha Yoga is gentle, therapeutic and tailored to each and every child. It is suitable for babies and children with a wide range of conditions, including: autism, Down’s syndrome, cerebral palsy, hemiplegia, dyspraxia, dyslexia, ADD, ADHD, wheelchair users, and many more.
The practice of yoga has an extraordinary power to help us all – no matter our age or physical and mental ability – reach our fullest potential; that potential is not only physical, but mental and emotional.
For more information, please contact Sophie Purvis at sophiepurvisyoga@gmail.com or 07703722539.
The Special Yoga Centre which offers yoga therapy for children with special needs. They do it on a donation basis. I don’t know much about it other than that it is unique in being the only centre in the UK to do this.
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.
NW8MUMS 