I’m delighted to introduce a Guest Blog Post by Kirsty Evans of Itsallaboutevie,
Writing from the heart about what family life is like when your beautiful eldest daughter happens to have Down’s Syndrome
There’s no “I” in Team
Evie is 6 years old and has Down’s syndrome and sensory processing disorder.
She has an awesome team of support around her, from 6 weeks old we have been heavily involved with various departments of the NHS.
When Evie was 3 years old we lost her brother Joshua through still birth at 34 weeks.
Her medical team and professionals were truly awesome with us.
At that point Evie had just finished portage, continued to have SALT, 1:1 at nursery, GP support and paediatrician plus the usual Opthamology and Physio.
Her team rallied around us. They listened and supported us. They helped us in what was one of the most traumatic times of our lives. Evie didn’t really understand what was going on, she just knew that we were incredibly upset.
I don’t think that these wonderful people will ever know how much their actions helped us.
Her nursery team were awesome. They sat down with us. Listened, cried with us. They had Evie for extra sessions when we had appointments. They shared our deepest pain and fear. And when her sister came along a year later they shared our joy. Evie’s nursery team had looked after her from a few months old until the day she left to go to school. They fought to get her support and dealt with the rubbish LEA. They became our friends.
When Evie had her nursery leaving party, I was asked to say a few words on behalf of all the parents. I cried. I couldn’t express my gratitude enough. I couldn’t get the words out. These ‘staff’ had supported us through medical scares, the loss of family members and our son. They had accepted our daughter into their nursery and she became a favourite. It was a safe haven. We trusted them implicitly. It’s terrifying trusting someone with your most precious child.
Likewise her medical team…our GP popped in after Evie was born. Totally unannounced…just wanted to check that we were ok. If we needed anything he was there. When we lost Joshua, the GP popped in again. Listened, cared and didn’t judge. Whenever we have needed advice, our GP is always there. Never an issue with appointments. Always listens. Always treats us with care.
Her SALT and Portage workers were two of the best people that I could have hoped for. They cancelled appointments with other professionals that I couldn’t face. They made sure I could talk. They made me realise that by being there for us, it helped me to help Evie. It wasn’t a one stop shop, it was a whole system of support.
Being the parent of a child with additional needs can be a scary place. In my previous working life I often saw SN parents who were frightened to confide in their child’s team.
We have been so lucky that we haven’t had this issue.
I’m not saying that we haven’t has issues. Yes we had a couple of dodgy professionals….
The health visitor who thought our house was too clean. She was going to refer to social services. Clearly we were unable to cope with looking after a newborn with a diagnosis of Down’s syndrome (who slept a great deal), cleaning our newly renovated house and actually looking presentable ourselves. We laughed when she told us, but it dissolved all trust in her and left very little respect for her as a professional. I never called on her for help.
When our son died, she made an appointment to see us. I arranged for it to be cancelled. I couldn’t bear the thought of seeing her and waiting to see what reason she thought we weren’t coping this time…maybe our house would be too dirty?!
Also the paediatric team who left us without information after they had given us Evie’s diagnosis. We were left to stew in hospital whilst we awaited her test results. No leaflets for the Down’s syndrome association, no internet access even, only basic advice and an assurance to not worry until it was confirmed. We sat in limbo for days. Basic needs were tended to, chit chat but the bigger issue was left untouched. My husband ran down the corridor after her paediatrician to get confirmation of her results as they had just left us alone.
Our NHS gets such a hard time. GP’s are made to look like skivers, surgeons, nursing staff, SALT, physio’s and others lazy. Departments are under constant pressure to cost cut. They work all hours and yet still more is demanded of them. I’m not saying it’s perfect. I do believe that it’s a case of top heavy management and money is often wasted. But the hard working, on the ground team is usually awesome. Yes, you get your rogue elements, as with everywhere else. But what we have in this country is a fundamentally brilliant system. Everyone has the right to be treated the same regardless of colour, age, knowledge, wealth or ability.
It wasn’t that many years ago that people with Down’s syndrome were not treated properly if they had heart conditions. This has changed thank goodness but it’s well within this century that this changed. Our NHS has saved my loved ones’ lives more times than I care to recall.
If you believe what you read in the press, our NHS isn’t worth saving. I disagree. It’s one of the most important foundations of this country and we need to defend it.
Likewise our childcare system. I will forever be grateful for the recommendation to Evie’s nursery. And for the staff who I trusted from the beginning.
To all of the people who have been on Evie’s team in the past or who are on it now, I thank you…
To those who were there at our worst time, thanking you will never be enough. You made a real difference to our lives. You gave us, me in particular the strength to carry on, to believe that our lives would get better.
To read more about Evie and her family, please visit itsallaboutevie.com
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