“I want my son to matter. I want him to be spoken about.“

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I cried, I am so frustrated with myself but I cried.

On Friday 10th September 2021, I attended the DCP parliamentary event to raise awareness of the impact of Covid-19 on disabled children and young people. As a parent carer I was asked to discuss the impact of Covid -19 on our lives. The event was hosted by the lovely Mary Foy MP and the fantastic DCP staff.

I had been given the list of questions before the event, I had my answers prepared, I so wanted to be professional and get across the impact of how Covid-19 has affected our lives, but as soon as the question was asked I cried.

I cried because I had listened to the young people as they shared how they had been affected by Covid-19, their words, their struggles, I cried.

I cried because there I was asking, begging parliamentarians to see my son, to see me.

The week of this meeting we had been away to Yorkshire for a few days and we had to return because of Daniels need for bloods and his levels checked. We also came home because we couldn’t afford to book an accessible place to stay and we were physically broken.

The night before the meeting I had held Daniel tight as he tried to breathe through another panic attack. Why should a seven year old feel so much fear?

The morning of the meeting my back had given up lifting Daniel as we still wait for his hoists and adaptions to be done nearly two years on from the planning, Covid delays.

I cried because I was exhausted and I was tired of pretending to be brave.

This event mattered, it was an opportunity for those attending to hear firsthand the impact the pandemic as had, not the numbers, but the people. It was important to give the parliamentarians the opportunity to hear our stories but also to ask us, how, why and what could be done. To reach the ears of those that can effect change, their voices heard.

I cannot find the words to do justice to the impact of Covid- 19 on my family, on Daniel. How do I find the words to describe the fear of a young boy who felt abandoned, who felt forgotten? A boy who has been hospitalised due to separation anxiety, the fear that I will leave him like others. How do I explain the impact of watching my daughter sob heartbroken because her baby brother is reaching for her and she cannot hold him, cannot hold him close and tell him it will be ok, because its not.

How do I tell you about the fear that my son may get this virus and that it may take him from me, the anxiety that crushes my chest every time I have to engage with the outside world? What if I caught the virus, who would care for him, who would love him the way he deserves to be loved?

Words are inadequate when I see his body stiffen and his pain levels raise due to no physiotherapy beyond what I can do, but I am not a professional. Sitting in a wheelchair that is crushing his chest so that his breathing is harder, new wheelchair delayed because of Covid.

What words describe the exhaustion of my husband and I managing a 24 hour care plan with no support, sleeping in shifts, broken, scared and exhausted. Our beautiful boy dependant on us for everything yet our human bodies were failing.

Covid-19 has impacted so many, I am not trying to underestimate that, but I have sat watching our politicians on the screen waiting, praying for them to talk about my son and those like him. To mention the parent carers isolated at home, yet no words are spoken for them.

This meeting mattered and I am annoyed I cried but how could I not, I am broken, I am isolated and I am angry that my child was forgotten.

” I want my son to matter, I want him to be spoken about”

This meeting was to highlight and raise attention to the research and report published by the Disabled Children’s Partnership

 Then There Was Silence – brings this research together alongside new analysis and an evaluation of how the voluntary sector responded to the meet the needs of children and families.  It draws on the experiences of countless families, through surveys and interviews, as well as information obtained through Freedom of Information requests and other research.

Key findings in the report are that –

• Children and families have been isolated and abandoned; and not been listened to.
• Covid restrictions meant services were stopped or reduced; and many are still slow to return.
• Mental health and wellbeing of all the family has deteriorated.
• Children’s conditions have worsened and needs become more complex; delays in assessments mean needs haven’t been identified.
• The charity sector demonstrates agility and flexibility and was able to extend its reach to help support families.

As a result of our findings, we have identified five vital steps for central government, local government and the NHS.

1. Prioritise the needs of disabled children and their families within covid recovery plans and programmes.
2. Tackle the backlog in assessments and ensure that children’s needs are re-assessed in light of missed support during the pandemic.
3. Ensure the right support is in place for all children and families, including education, health (including mental health), therapies and equipment.
4. Take a whole family approach to assessments and support, including siblings. This should include the provision of respite/short breaks and opportunities for families to take part in activities to overcome the isolation felt by so many.
5. Invest in disabled children’s health and care services through the Comprehensive Spending Review.

This report is the tip of an iceberg, Covid-19 has only highlighted a system that was already failing, underfunded and uncared for. Children and young people with disabilities matter, they deserve to live a fulfilled life whatever that may look like. They deserve love, compassion and the chance to achieve. But most of all now as we try and return to some normality of life with Covid-19 these children, these young people need to heard.

My son matters, hear him.