Who is making things worse?

A comment on a fb support group got me thinking. The person asked what about when the pda parent does everything wrong and makes everything worse. She commented that nobody writes that article.

I have always tried to write practical, real suggestions that might help because that was what I couldn't find when I was struggling. It doesn't help to know how hard things can be, I thought, because I'm living it.

But the comment got me thinking. I remembered a time when I felt like everyone else was making progress, except me.

Parenting pda is counter intuitive. Things you feel you should do usually have the opposite effect to the one you want. It is extremely difficult to explain this. You look like a parent who never says no. You never say no not because you don't care or because your child is spoilt, but because that is often what it takes to enable your child to function.

• I am making school optional today because I know that will help my son to go.
• He can eat his dinner at his computer today, because I know the alternative is not eating.
• We can go out in the rain in sandals today, because I know shoes may mean we don't get out at all.

Tomorrow we may need to do the same, or not.

Everyday we adjust.

But before I knew about pda, I did all the wrong things. I confiscated and dictated. I insisted. I grabbed and I yelled. I hid out in the bathroom. I lay awake at night. I cried. I researched and bought books and couldn't find anything that helped. Meanwhile my son struggled more and more and things got worse and worse. I asked my friends and family for help. The responses differed hugely. I was reassured by many, though that didn't help. I was shocked by some who questioned my parenting, though that didn't help. I was encouraged by others to keep searching for answers.

When school became the issue, I began to ask for professional help. And then I found myself in the world of professionals without understanding who made things harder, and that didn't help.

There are many low moments, but one I want to share. And the reason for sharing is the comment made on the support page. Perhaps it is important to know that other people have had as bad a time as you're having. Perhaps it is important to know about that first, in order to understand that things can get better.

I can remember reading about autism, and going to training courses, and listening to positive people telling positive stories and feeling hopeless. Nothing seemed relevant to me. We were struggling daily in a way nobody described. Non of the strategies offered seemed useful.

My lowest point happened when the HSE autism support person, visiting my home, initiated a child risk assessment against me following a process of writing down a comment I made about not coping, discussing it with her supervisor weeks later, and together deciding it should not be ignored.

I had a rushing noise in my head and I heard no more. She kept apologising, said hopefully it would produce more support, and left me a number for a social worker I was to ring. I paced up and down my kitchen in a panic telling myself 'this is bad, this is really bad'. The social worker mentioned care order and danger to my son and that she couldn't assess that. She asked could she have my g.p. details and when could I go to see her. I said as soon as I got off the phone. I sat in my g.p. waiting room in a state of shock. My g.p. gave me a hug and said 'you're having a bad day, aren't you? They were on to me already, and I told them there is absolutely no concern of any kind with you. You are an inspirational parent and they should be supporting you more'. The following morning the action was closed. It was Halloween.

Writing about this still gives me shivers. I call it my 'Halloween Horror' and I can never ever remember the term 'risk assessment' when I talk about it.  Over that weekend the shock receded and I got more and more angry. If this could happen to me, who was doing everything possible to help my son, then it must be happening all over the country. What if I didn't have a g.p. who knew me since my pregnancy? What if I wasn't so capable, educated, able to respond? What about all the other parents struggling without support?

This experience was the beginning of a change in my attitude from victim waiting for help, to parent fighting for rights.

I wrote a letter that Sunday. This was the beginning of a process that culminated in the HSE paying for an assessment for my son from the Elizabeth Newson Centre in Nottingham which took place in Ireland by the pda expert consultant Phil Christie.  Our lives changed for the better.

I addressed the letter to all parties involved at that time, NEPS, HSE, school, EWO etc. Here is the letter:

“I have been advised by Social Worker ...... in a phone call on Oct 31^st that the risk notification you actioned on Oct 30^th is closed. I was completely taken unawares that this notification arose from a comment I made in general conversation with you in my kitchen two weeks ago and had to include the subsequent involvement of my GP. Now that I have witnessed the speed with which the system can work I am hopeful that similar energy and resource levels be invested in the objective of finding appropriate professional support for my son.

As I head to the PDA Conference in Cardiff, and my son continues to do well, supported solely from the learning and interventions I and his father have actioned on our own, I quote from the recently launched UK PDA society PDA reference booklet for clinicians: “It is critical that professionals listen to parents, try to gain as full a picture as they can, and work together in a supportive and non-judgmental way.” I am now even more concerned that interaction with professionals in this country who do not have the right expertise will actually cause further distress and harm to both my son and me.

I have always been willing to engage with the system and have provided any and all information requested. The same courtesy has not been extended to me. I wonder when the system here will stop making things harder for us, and start helping.

From now on, in efforts to further support my son, I will copy all correspondence to those professionals involved in his case so that you are kept informed, and also so that it may be appreciated how I, as parent, have to engage to such an extent, independently with each professional/department.

With the above in mind, my understanding of your supervision meeting with ..... of Thurs Oct 23^rd was that additional support and support strategies would emerge from it.

According to my recollection, you were to clarify whether further assessment or diagnosis is needed, and how PDA expertise can be accessed.

I look forward to hearing from you.”

I want you to know that in Ireland, if you are struggling and things seem hopeless, with pda, that is typical. If you are dealing with authorities that doubt you or are making things harder, with pda, that is typical. If you are attending autism courses, and reading about autism, and trying autism strategies that don't work, with pda, that is typical. If you are asking for help, and non is materialising, with pda, that is typical.

I also want you to know that things can get better. I want you to know there is no magic fix, no easy remedy, no pill, but there are others who have been through it, who have information, who have strategies that worked for them and might work for you. I want you to fight for your rights and your family's rights. I want you to stay strong when that seems impossible. You will do the wrong things and make things worse, but you will also learn, and do the right things and make things better.