Stephanie

Stephanie

Being a Carer changed everything.

Being a carer has changed everything. From the moment you get up to
the moment you go to bed it is everything that you can think about and
sort.

For me it meant that I had to quit everything from my job to my
university course because I didn’t have the mental capacity or the time
to do both. Basically, if I was not meeting my children’s needs, I was
trying to sort the quagmire of issues with schools and the local authority.

There is also the issue of SEN hierarchy as in there are those that see my
children as not disabled enough for help. I can’t stay mad at them
because we are constantly fed this mantra that there is not enough
budget to help everyone but the bracket of support gets smaller and
smaller meaning more families suffer for it.

“It has made me a tougher person for sure but also a ghost as in I don’t have a social life or have many friends that are not carers themselves to be honest.”

My other half is the fun one and I am the one that is always sorting out problems, appointments and anything else that is needed.

I had a lawyer tell me recently that I was a battle-scarred parent at a transition event and that’s pretty much right. I wouldn’t change my children for the world though and has taught me some professional skills along the way that have come in handy.

We don’t have any help. I had to cut ties with my family because there was an expectation that I had somehow done something wrong and that it was just bad parenting and they treated my children accordingly. They were being as toxic as it gets so I had to walk away. My husband unfortunately had to cut ties as his family would not take our children’s health needs seriously which resulted in an asthma attack and a server chest infection coupled with a complete unwillingness to learn what to do so for their own safety we had to cut all ties.

Basically we are on our own and we don’t have relationship as much as two people fighting the good fight.

We have not had a night together alone for 3 years but that is not going to be a surprise to many reading this. As of right now the best services that have helped are the local family support services and independent charities with groups and afterschool clubs. Local authority support begins and ends during school times as they are a buy in service only and even then, it’s a report and assessment only.

There is nothing for families as it down to families to provide this but again a cost factor is an issue. Because of this trying to find support and then keep it is a battle in and of itself especially as departments keep being closed down.

I have been part of the SEN community now for 13 years and I would love to say things are getting better. The staff themselves are fantastic but their hands are just as tied as mine and it basically comes down to cost and cuts.

My advice to new families is this. Don’t do it alone and stick to your guns. Your greatest support network out there is other families that are going through the same hurdles and the same issues as your family are facing and they are a source of not only great support but also of wonderful information that can be used many times over from a change in phone number to waiting times or even who the new member of staff is so you are prepared.

Stick to your guns as well. You know your child or person you are caring for and you are their voice when they cannot use it. Remember that this is your strength and your truth and don’t let anyone tell you otherwise. My last piece of advice is do not lose yourself in this world. Even if it just reading a book when you can or having a hot drink find some time for you as you are going to burn out quick if you don’t. It’s ok to ask for help, its ok to have days where you don’t finish that never ending list of housework and its ok to feel overwhelmed. Taking care of your self means that those that you take care of get the best of you they can.

Please share your story and give voice to your experience as a Birmingham Carer. Call us on 0121 274 0413 or emailinfo@forwardcarers.org.uk. Together we can raise awareness of Birmingham’s Unsung Heroes so that all Carers have a voice