Trust your gut instinct and persevere
Being qualified as a children’s nurse and health visitor didn’t really prepare me for all that comes with being a parent. Sure I knew what the textbooks said and had supported families but no one – not even if they had tried – could have prepared me for the emotions involved in raising children.
I’m now a mother to 4 glorious and beautiful children – 2 of whom have special educational needs (SEN). Parenting special needs children can feel particularly isolating and lonely and for some reason, the emotion is supercharged! And protective instincts can be overwhelming. But I want to reassure you that there is always someone who can help and show you the way. Sometimes that comes from the most unexpected places.
My eldest daughter (now 17) is immensely bright. She’s motivated, conscientious, studying A levels and hopes to study medicine at university next year. I first suspected that she may have dyslexia at around the age of 6. Her verbal ability and knowledge of the world around her was incredible. Other parents used to comment on how clever she was and yet at parents’ evenings the teachers were definitely not as complimentary about her academic prowess.
I had asked every teacher from year 1 onwards (in 2 different schools) if they suspected she might have dyslexia and I was told repeatedly that she just wasn’t very bright. We relocated to Leicestershire as a family when Charlotte was 10 where finally one year 6 teachers approached me and said that she felt Charlotte might benefit from a dyslexia assessment. ALLELUIA! I will always remember the gratitude I felt and continue to feel towards that teacher.
Charlotte underwent the assessment which showed emphatically she was highly intelligent but was in the worst 3% of dyslexia sufferers in the UK. I was distraught, angry, frustrated at all the time wasted the help and support she had missed out on and the moments for her where she felt she had just failed.
As a high functioning child, she now did not qualify for additional support via an Education Health and Care Plan (EHCP) where the local authority would be duty-bound to give the school extra resources to meet her needs. Very, fortunately, she was at an outstanding Primary school with great teachers and SEN coordinator and had a great relationship with them.
I can’t stress enough how important that partnership with the school was. They immediately put the support she needed to get her through her year 6 SATS and entrance exams for secondary school. She did well and scored just above the average in literacy and reading and secured a place at a good private school with a superb SEN department. Charlotte's commitment and hard work was phenomenal, often working twice as hard as her peers for the same outcome; she achieved amazing GCSE results, including an A in English.
When Charlotte was 4 years old her brother Toby was born. While Charlotte's difficulties emerged over time, Toby was very different. Even our experience with Charlotte could not prepare us for the emotionally charged time to follow. At 2 weeks of age a friend who was an SEN teacher came to visit. I have a vivid memory of our conversation – he had already been sleeping through the night for several days and when he was awake he would just stare at things barely blinking. I had tried to convince myself and my friend reassured me that it was just him trying to ‘lock on’ to an object and focus on it. But deep down I knew it was much more.
As the months went by Toby seemed delayed at every stage but only slightly. Health care professionals just kept batting away my concerns. I started to get more concerned when his speech clearly wasn’t developing and as a result of him not being able to communicate effectively he became frustrated and his behaviour was just awful.
I was so embarrassed by numerous loud tantrums in the supermarket – the eyes of the nearby shoppers judging me and audibly tutting was so very hurtful. I was actually quite a strict parent and my work with other families had taught me that the setting and sticking to clear behaviour boundaries were important for all children but especially those with additional needs. I would just get back into the car and sob.
I finally persuaded the Health visitor that there was something going on for him just before his third birthday. We were referred to a paediatrician who immediately diagnosed Autism. Again my professional experience and my gut instinct kicked in – I was sure it wasn’t Autism. We got another doctor to give a second opinion and he did not agree. Toby was diagnosed with speech and language disorder and delay and learning difficulties. My first reaction was sheer distress. I sobbed and sobbed until my face was swollen. Irrational thoughts went through my head. How will he support himself without a job? Who will care for him when I die? Will he be able to live independently?
I also felt a deep level of guilt about the pregnancy, was it something I had done? Guilt for mourning the loss of a healthy happy son who was clever and should have gone to university. I felt guilty for assuming I was immune to having children with additional needs. I felt like the worst person! Thankfully, this passed and I felt gratitude for Toby. I had always loved him – he was my baby – but because of him I had become a more patient and tolerant person and had developed parenting skills I wouldn’t have if he had been born any different. Some of us believe in God/fate/destiny/the universe……. Um, I’m not sure how Toby came to us but he needed us and we needed him. As time has gone by I have fought for him to get the right therapy, educational support, to stay in mainstream education, you name it – I fought for it!
Tips if your child may have needs?
Always chat through your concerns - with teachers, carers, nursery carers, GPs, health visitors
Trust your gut! Sometimes a little perseverance is needed to get what you need for your child
Always remember, some incredible people have faced personal challenges- Greta Thunberg, Chris Packham, Richard Branson
Use Online Resources - look for reputable sites such as:
nhs.gov.uk - the Child and health development section