A couple of months ago I was faced with this comment during a discussion with a professional about Saoirse:
“so what you’re telling me is that you would rather label Saoirse than look at your inconsistent parenting”
Instantly I felt guilty for wanting a label, that it was somehow wrong. Did they all think that? Was I just another “parent” demanding the world fix our daughter and was she right? Was it really our fault? If I am honest she made me feel embarrassed and that I was a failure as a parent. I no longer felt I could hold my head high in front of professionals as surely they must all think the same as her?
What is so wrong with wanting to know why your child is reacting or behaving the way they do? Also, what does inconsistent parenting really mean? I don’t know many parents out there that get it right all the time, it doesn’t mean they are not doing a good job. If our parenting was inconsistent then our eldest would be displaying the same issues?? He doesn’t.
Of course I held my head high and walked away. Once in the car my head wasn’t held high as I was devastated.
I am pleased to say that so far we have not had many negative experiences. There are services that are amazing and do a fantastic job. Without these guys coming into our lives when they did I don’t know what state my mind & family would be in right now.
So why do health professionals get caught up on giving labels and why are families and patients chastised for wanting one.
For me as a mum, I need the validation of what is going on with our daughter. It’s not so much the label I am interested in but the rationalisation behind it, and having the knowledge and tools to work on the day to day struggles. However, without a label there is a reduced amount of support available.
We just want our daughter to have the best outcome possible. All research suggests early intervention is best. What can we do to reach our daughter with minimal damage to her emotional development?
We do have one label “Sensory Processing Disorder” when this was given it was delivered with a follow up statement “but sadly there is no service as funding was cut 3 years ago’ basically, they identify a problem without giving the tools to deal with it.
As time moves on and it becomes more and more obvious that something is different with our daughter, I go back to that conversation accusing me of wanting a label and I get mad. I get mad at myself for allowing her to speak to me like that, I get mad because I can’t seem to fix it, I get mad because it causes arguments in the house about what’s happening, I get mad when I see our eldest worrying in case she gets angry with him. I get mad that our daughter isnt getting better, then I get mad at the world with all the (un) helpful advice or anecdotes from well intentioned people. Getting “looks” from others when we are out as Saoirse is having a meltdown.
Sometimes when I talk about a difficult day I don’t want to have any advice or it tried to be fixed. I just want that person to listen and say “god that sounds shit”
In trying to do the best for all our children I have tried everything, done everything, spent hours on the internet trying to research symptoms, behaviour, patterns, resources, solutions, spoken to anyone I know who has any knowledge or expertise in the field of child health. At the end of the day it doesn’t matter how much research you do or how much you try your best, you feel alone and stressed from it all. You start to withdraw from social outings, friends and the outside world. Eating out is no longer an option. By 8am we are usually exhausted and the day hasn’t really started. Watching your child struggle and deteriorate is heartbreaking. As a parent you are their advocate. You are the one fighting their corner. I know I will fight with every ounce of strength I have for my children. I am no different from any other parent out there.
So, what is the answer? For me I am slowly starting to accept that I cant fix Saoirse problems myself. I need help, and as a family we need support. What we don’t need is judgment from others. Just knowing someone is out there ready to listen can be vital.
As I sat in a review with Saoirse Consultant, I was told that we just needed to “risk manage” Saoirse and there was nothing further that could be done until Saoirse turns 5 and starts school. That was a couple of months before the school summer holidays this year. I will be honest, this summer holiday has been rough on us as a family. We have had fun times, good times, difficult times, and a few terrifying times. Would I change Saoirse? No I wouldn’t. Would I change how the service supports families…yes, in a heartbeat.