I have been looking.
I have also been hoping that something just clicks and I find the perfect place.
It’s something that’s not spoken about often and it is something that the government like to take from.
What am I talking about?
While other parents are preparing their 17 year olds for the pending Leaving Cert year, I am trying to find a suitable placement for my 17 year old as he begins his final year in school.
When I have spoken to other parents on this path they have told me that I am very early in starting my search, a lot don’t plan on looking into those kinds of services until this September, I started last May.
My 17 year old has a progressive condition so I have to look to the future and what service would best suit him by the time he reaches 18,19 and hopefully, so on.
The 17 year old that these service providers meet and understand this year will be different to the 18 year old they meet when entering their center. It is hard to explain and even harder to find a center/service provider who can accommodate those ever changing needs.
My choices for Ethan are limited due to his progressive condition. This means that there are roughly three centers to choose from managed by two different service providers.
There are more choices for parents of young adults who are more capable; I know how that sounds but Ethan can’t retain anything new he may learn;so all we can do is try to maintain the skills Ethan still has – and yes, that’s a horrible reality for us all.
I have visited these three centers and I honestly felt like Goldilocks- none felt right.
None felt ideal and none made me excited to see Ethan there.
I honestly don’t know,maybe it is the fact that Ethan will have to leave the safety of his school and all the staff that I know adore him.
Maybe it’s more about me than Ethan?
The people I met in the centers were lovely, welcoming, friendly and funny. They were warm and introduced me to many of the service users themselves. Yet, I struggled to imagine my Ethan there.
I left each place trying to make a pro and con list but it was pointless as I don’t have that much freedom to choose.
It has to be one of these three but which one and how do I know I will make the right decision for Ethan? I don’t have the answers.
We place so much trust in strangers and so much trust in ourselves to make the right decision – I really have no idea how to make this decision and I have never struggled so much with something regarding Ethan,despite all we have been through.
I plan to revisit each center again before October in hopes to get more of a feel for them as I will be able to see the current school leavers settling in…
Time will tell but time is also ticking by and after I have dealt with this,there is his hospital team, his respite and his consultants to think about as he turns 18; officially an adult no longer able to use the children’s services which we have come to think on as extended family…and that is a cold hard fact of having an almost adult with a disability such as Hunter Syndrome.
My mind races with questions I am almost too afraid to ask, instead I tend to ‘hope’ and come up with valid reasons why things should not change…
My hope is that he can continue with Temple Street and his excellent team there.
I’m hopeful too that our local consultant will keep Ethan on with her as she knows him so well now and the thought of having a whole new team not only scares me but I think she isn’t too fond of that idea too.
I wonder about our local public health nurses and all the support, advice and help they have given us,do they just stop too when the number 18 makes an appearance?
I have no idea if we get to keep our outreach nurse or not,my hope is that we get to keep her as she is the most wonderful lady that ever stepped into our lives.
I know LauraLynn will no longer be able to support us as it is a children’s hospice and I know Ethan will have to leave his wonderful respite team in Salthill.
There is a lot of change afoot when your child is on the brink of adulthood… and it is scary.