Sarah’s story: raising two children with additional needs

Candles, aromatherapy, hand massages and soft music; these were the preparations I made before giving birth to my first child, Paul. The birth was anything but calm and serene, but thankfully we survived … just!

Three years later, my second son was born – a much easier birth, but during the first night Daniel was extremely distressed and not feeding. The nurses asked if they could take him out of the ward as he was disturbing others. This was to be the first of many similar requests. Years of sleepless nights followed, and a very easily agitated baby and toddler, who apart from language, hit most of his milestones.

Every single soft play, toddler group and play area produced a torrent of issues; hurt children, parental complaints … I walked away from most lonely and crying.

Preschool flagged issues, and a sensory processing diagnosis was made. Then came the transition to primary school, which was quickly followed by another request to exclude. I rapidly got together a multi-agency meeting and worked with the school to keep him in mainstream for primary and juniors.

Daniel was diagnosed with autism spectrum disorder (ASD) when he was five and attention deficit hyperactivity disorder (ADHD) when he was ten. We finally got a full night’s sleep when he was eleven! Daniel presents with other struggles too; severe sesame allergy and pathological demand avoidance (PDA) traits.

He is a beautiful, unique, funny and caring young man. I’m so proud of his achievements – some of the smallest everyday things that we take for granted are a massive accomplishment for him. But hundreds of phone calls and emails, thousands of ‘reasonable adjustments’ and millions of painful moments leave a lasting impression on the whole family.

By the time my eldest son Paul transitioned from primary to secondary school, he too was diagnosed with ASD.

It was at this point, raising two children with additional needs, I realised so much of my energy and time was taken up by working and battling with everyday routines, educational support, health professionals and therapy that I had not given myself time or permission to grieve the life I had expected.

My husband and I have struggled with conflict and misunderstandings while trying to reach a consensus over what appropriate support and parenting styles look like. You cannot imagine the amount of time each ‘battle’ to get our sons the help they need takes, nor the levels of emotional and physical exhaustion we experience.

I needed someone to talk to. Sadly we’ve lost a few friends on the journey; those who couldn’t cope with us, but on the whole, friends and family have been lovely. I needed someone else; someone who had walked a similar path, someone who wouldn’t judge, someone who ‘got me’ and my situation. This was when I contacted Care for the Family and asked for help.

My befriender became a wonderful source of emotional support and encouragement. She stood with us as we applied, and were rejected, for Dan’s care plan. And again when eventually, after mediation and many battles, we got one! She walked alongside me as we encountered the stressful process of a tribunal and fought a huge battle to get the specialist secondary school placement Dan needed. During the second lockdown the emotional energy and mental health of the family was at an all-time low. We had to have emergency meetings and lots of additional interventions. I shared all of this with my befriender.

In 2019 we had our delightful third son Jack. I pray every day that the joy of watching him grow isn’t stolen by my anxious watching for signs of ASD.

My befriender accompanied me as I continued walking my unique additional needs parenting pathway. Sometimes I cried, other times I laughed and sometimes I just talked. She just ‘got me’. She listened, she heard what I was saying, and I felt safe enough to share the heavy burden I was carrying. I felt understood.

In early 2022, scrolling through Facebook, I saw that Care for the Family were recruiting new befrienders. I had received so much support that I wondered if, now that life was on a more even keel, it was time to help someone else. I prayed about it and talked to a couple of people I trust, and I decided that this would be a good way to pass on the comfort that I had received. There have been periods in my life when I couldn’t see that I would ever be able to use my experiences for good, as the ‘heat’ was just so strong. Now, having come so far with such good support, it feels a massive blessing that I am able to help someone else. I thank God that we are still here to ‘tell our story!’

Find out more about our Additional Needs Befriending service and how to access it.