It is good to talk

I have written before about how isolating being a parent of a child with special needs can feel, but if you couple that with a mental health issue then it is a double whammy. I have looked but not yet found a statistic for the prevalence of mental health problems amongst special needs parents, but I suspect that, if the average of the full UK population is one in four will suffer, then I am guessing at four out of five. That is only based upon the conversations that I have had with other parents and carers, particularly at the monthly coffee mornings that I run at school, and nothing more scientific than that.

Many special needs parents are sleep deprived and that, being a form of torture over any length of time, can create mental health issues. It is impossible to relax fully when you have a child with special needs : even when they are at school, you can still get the call, as happened to me yesterday, to say that Joshua had had a cluster of seizures and that he needed emergency medication to end them. As this happened at around 2pm, it meant that I brought him home rather than risking him in the taxi where they cannot deal with his seizures adequately. When Joshua is at home, you are on ‘red alert’ 24/7 : last night he went to bed at 9pm, exhausted by the after-effects of his seizures and rescue medication, and I followed him around 10.45. I heard him up and on the landing and thought it must be morning, as I had definitely had some deep sleep which had suddenly been disturbed by hearing him, but once we got downstairs I checked the clock, and it was just midnight, so I had been asleep for just over an hour. He proceeded to have some cereal while he experienced a few absences, and then he curled up on the settee, happy that I was with him, and fell asleep again. I did not want to disturb him, so I spent my night on the two-seater settee, my ear primed for any more seizures.

We can spend our lives, or so it seems, fighting for the rights of our vulnerable children, so much so that we neglect to take care of our own health, physical or mental. If those battles are won or lost, the toll on the parent is huge and it has to have an impact.

None of us knows what the future holds for our children, but that anxiety is multiplied when your offspring has special needs : will they ever leave home and be able to manage an independent life of their own? Will they be able to function in the real world beyond school, where relationships and employment should be their future? What will happen to your child once you are no longer around or able to care for them? All of these concerns could drive you mad if you let them. My technique for self-preservation is that I do a very good impression of an ostrich!For example, I knew that we needed to write a will to protect Joshua’s best interests for when my husband and I die, but that is only something that we finally achieved in his 17th year, that is how difficult that was to face.

So having tried to give an insight into how it feels to be a parent of a child with special needs, let me tell you one thing that I have found that eases the alienation and stress. For me, sharing with and supporting other parents in a similar position, is really beneficial.¬† You immediately feel a common bond and do not have to explain what you mean as they know from thier own experience. At the coffee mornings, our ‘children’ – Joshua is the oldest at 17 – are all very different, have a different diagnosis and their behaviours are all unique, but we are all parents , trying our best for them and we face many of the same battles with social workers, local authorities, school…..sometimes we find that someone has advice¬† for another parent, from their own personal experience, and other times we just need to rant and know it is a safe place to moan about how unfair life is. But I am happy to host and bake for our monthly gatherings, so that such an environment exists for our parents, who do a great job just holding things together.

Togetherness

Joshua used the word ‘together’ a lot over this weekend and beautifully in context too :

On saturday morning, when he came downstairs, he looked out of the kitchen window and commented ” No bus!” which is what we call his school taxi, so I replied ” That’s right Joshua, no school today.. we are going out in the truck later”. He loves a drive out in our pickup truck so he replied ” Truck.. Together” and he beamed at me. That warmed my heart to see that the prosepct of a family outing, made him so happy.

On that trip later in the day, we pulled into a service station for diesel. I hopped out of the truck and told him that I would not be long and he replied ” together!”. I filled the car up then went inside to pay, during which time he had kept opening the pasenger door to peep at me. Joshua slid his feet onto the ground – he has very long legs – and swivelled round in his seat, but thankfully he was trapped by his seatbelt and so he could not get out , so that we could be together.

Finally at teatime, I asked him if he would prefer to eat his lasagne at the kitchen table or on his knee in the lounge, in front of the television? He pointed at the kitchen table and requested ” together”, so that is what we did.

This progress is so special as he is using so many more words these days, but he is not just repeating them as he did this time last year, he is using them perfectly in context, to express his clear preferences. He has never in his life really had that interest or communication skill to enable him to make such choices. In these three examples, Joshua clearly indicated , more than once, that he wished to be with me, his mum, which , coming from a 17 year old, is very special indeed.