There are moments when I just need this all to stop.
Last week I had one of them.
It’s hard enough to push through when you are living in a war zone, the wear and tear it takes emotionally, when it really is just all-consuming and forever unrelenting.
But it’s nothing compared to fighting a war against a system of individuals who follow corrupt practices and no matter how much you shout, it feels that nobody is really listening to you.
I have to remember to detach myself and think strategically – that this is the only way forward when trying to be a ‘professional parent.’
As many of you will have seen on Facebook (link here), I was very fortunate to have been invited to speak at a conference on PDA, which was set up by the wonderful team over at Parenting Special Children.
There were many tweets trading on the day – for those on Twitter you can search under the hashtag #PSCPDAConference, and I will be working on writing a round up of the day in due course.
However, I have to write about something that is preventing me from moving on right now.
I’m hoping that by getting it down in words will help with part of the healing process; I feel so angry and broken that it is simply blocking me from functioning.
You see, I just need it to stop.
The racing thoughts, the pressure, the stress – all of it is keeping me awake and I’m pleading for it to stop.
When I explain it, you will see the paradox of the situation and the inner frustration I have about what has happened.
You see, the day that I was given an opportunity to deliver a workshop on PDA to a conference with over 220 delegates, was the same day that I was ‘uninformed’ and ‘uninvited’ about a meeting on my own child.
So, it really begs the question, why did those who organised it not want or need me there?
Could it possibly be that I have been asking the questions lately that they haven’t wanted to answer?
I was still waiting for a response on a Child In Need meeting that was set for the week following – I had complained that our SEND team had not been present in most of these and that they were withholding information from me.
In fact, I had lodged formal complaints through the system with our local authority and was still waiting for responses and investigations.
So many grievances have happened; they are the puppeteers to our whole SEND journey who orchestrate the strings and control our fate.
However, and this is a growing problem nationally with thousands of families, we become powerless as pawns within a system whereby there is no framework, no laws that are adhered to, so that when they are broken, we too as families, just break.
For when we identify the wrongdoings we suddenly become silenced.
That is, unless, we have the capacity to fight it to the highest tribunal courts, and living in the conditions we live in, you can imagine the amount of families that really make it to that point.
Yesterday, I wanted it all to stop.
I wanted to pull my daughter out of the system so that I could breathe again.
I’m weighing up the damage this is really taking on my own mental health and that it is making our lives worse, not better.
Receiving an email to say that the whole team around you had met up and discussed the choices being made over your child, but without your consent or input, is one of the most degrading things that can ever happen to a parent.
If I was incapable and she was in danger, then perhaps I could understand.
But I’m not.
I am the expert on my child and I’m not for one moment ashamed, or embarrassed, to make that statement.
After a long day waiting for the minutes from the meeting they finally arrived.
Documented in the first line of the report, was a consensus amongst many of the professionals present, that they were concerned I not been invited or even informed of it even happening.
My trust, in that very sentence, was reinstated.
They continued to say that they would take their own minutes too so that they could be shared with me after the meeting.
I know I would have been waiting for many weeks to have known what was said if it had been left to the SEND representatives in the room and for that I am grateful to have obtained this information early.
I can only imagine the inner turmoil these professionals may have felt when they arrived to support a family, who they have grown to know over the last few years, but to have found out that this had been done underhand and without any prior knowledge.
The meeting did progress, albeit without any of my input, but I can say I feel relieved that such dedication and commitment was shown by school staff and those working closely with our family that I can trust my voice was heard.
As a parent, not only was this disempowering, but it sent me into a dangerous place mentally. I already feel fragile, it doesn’t take a great deal of hurt or disappointment to throw me off balance.
When individuals act corruptly to suit their own agendas, when they are employed by the local authority to help those in need but actually cause further damage than good, well in my opinion it is nothing but a violation of the freedom and rights we are supposed to have in this society.
In fact, it is just criminal.
So who is listening?
I am just a silent voice that our local authority, who run very much like a business, simply view as a burden to their purse strings.
I can lay wishing that I had a team of SEND lawyers around me in abundance, able to take control of this flagging ship, to sail us into a much better place full of freedom and prosperity.
But the reality is … it’s just me.
Me, the mum.
The mum who has a lot to say but is being silenced right now.
One day, I know that I will be in a room evidencing what has happened so far, talking freely of the malpractices, the unethical behaviours and the negligence of those who purport to be doing a job professionally but simply don’t play by the rules.
I have learnt so much from some very dedicated and committed professionals, without their support in the background, I hate to think where my family would be right now.
It might not help us to clear the damage or erase the trauma that we have experienced – after all we are just another statistic to them.
But I will continue to fight on in the hope that other families, who follow our footsteps, can only be given a chance for a more peaceful trajectory.
I know that supporting others certainly helps with my own healing process.
I don’t want any other SEND families to feel like I do right now. I don’t want them to feel that the only option they have is for it all just to stop.
They cannot stop us, we must work cleverly and be united as parents, so that we can make them stop their wrongdoings instead.
We. Will. Not. Stop.