Steps to getting help

I’ve joined a group of mums to answer a Monday question. This week’s is:

“What steps did you follow in order to get the help you needed for your child?”

For us, that help was there from the start and is still here now. The steps came to us.

We spent a week in hospital after Coraline was born where we could buzz for help on everything from hiccups, to trying to help her breastfeed and expressing milk.

From our friends in Australia who have a daughter with Down’s syndrome, who we contacted for wisdom in her first days, to her Cardiology team, to her paediatrician letting us know about milk quantities, the help was there.

During her first weeks, home visiting health professionals gave us leaflets about so much locally like Portage, HomeStart, local parent-run charity 21&Co and “Get on Downs” coffee and chat group. These have all become a big part of our life.

We have monthly physio and speech therapy through the National Health Service (N.H.S.). We also have cardiology, paediatric, audiology and eye appointments through the N.H.S.

I’ve been to talks and listened to online talks. It’s coincidental that we live 20 minutes drive from the Down’s syndrome Association HQ. Friends from “Get on Downs” have recommended groups which we now go to (Digbies for speech and Small Steps for physio).

We applied for the Disability Living Allowance (DLA) and learned we would receive it (middle rate) in January 2019, when Coraline was almost a year and a half. It’s a mighty form, of many pages. Our initial application was rejected, and we submitted a detailed request for a reconsideration with help from local organisations on what to highlight. Receiving the middle rate DLA means, for example, that Coraline receives 15 hours of free education a week from age two (we use 9 hours at preschool). All children in the U.K. receive this from age three.

We are lucky and grateful for all that is provided for us.

My answer to this question in terms of our experience; you start the journey, the people and the help appear.

We’ve also had marvellous help in the fashion stakes from friends, thank you @elizadepaor for her amazing coat. Her Uncle Ed calls it her Jackie O coat.