It seems obvious that with the higher levels of caring involved in families with autistic children, there are of course higher stress levels all round. In any relationship, those closest to you bear the brunt when things are not going so well. Living with Pathological Demand Avoidance is often described as walking on eggshells. There's a whole other style of non-traditional parenting involved which means you have to plan ahead, and for every option, whilst thinking of how to give any demands indirectly - I can confirm it's exhausting. If you add to that a difference of opinion between partners as to how children should be handled, and add outside opinions and involvement from so-called professionals, then you can see very easily how seismic cracks can appear.
And yet, as a group we don't talk about it very much. I think there's a fear that if you start to talk, everything will crumble. There's also no getting away from the fact that the cause of the stress is not about to disappear any time soon.
Sadly I'm no expert on this subject when it comes to great solutions, so I'm hoping you can help. I was asked to share this post from a fellow blogger who feels at a loss of how to improve her situation:
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I married the kindest person I know, a family man who has always been there when I needed him most. Now I fear I am losing him and I don't know how to stop it.
Our Son ("Jack"), then aged 5, was diagnosed with autism almost 2 years ago. He is high functioning, lacks social communication skills, struggles with self-regulation, tries to control the world & people around him, is always on the go and has a hefty dose of demand avoidance. He is also obsessed with his Dad ("Adam").
Life in the past 2 years has been chaotic, challenging, emotional, educational, isolating and stressful. We have faced the uncertainty of not knowing what to do or who to ask for help, struggled to find professionals who could help us, fought exclusion from school, battled to get an EHCP, been lost when our childminder told us she couldn't cope with Jack, and worked hard to manage/ avoid his increasingly challenging behaviour.
Jack's obsession with Adam means that there are few waking moments at home when he is not demanding Adam's full attention. This also means that it is usually up to Adam to deal with Jack's meltdowns, as Jack is most responsive to Adam's attempts to help calm him down.
We have made great progress in understanding how to meet Jack's needs, however any attempts by me to help out when Adam is around is met with a refusal to co-operate and/or lashing out. I have even been asked to enter the house via the back door, so that Jack "knows whether to be excited or not when the front door opens".
For this reason, much of the responsibility of caring for Jack falls on Adam. This can be challenging, and the pressure of always being on the "front-line" of managing Jack's anxiety and behaviours is starting to weigh down on Adam.
Last weekend the man I love break down in tears. Jack was in meltdown because his sister had something that he wanted and was screaming at the top of his voice, his sister cowering in a corner as she tried to avoid him, and I was in the middle trying to broker the peace. Adam walked in on us all, and immediately stepped in to help calm Jack. Five minutes later, Jack was screaming that we "were no longer his parents" and Adam was sitting on the floor in tears trying to stop Jack from hitting him.
This is not the first time that this has happened. Over the past few months this is happening with increased frequency, and Adam is retreating into himself as struggles with the pressures of caring for Jack. I wish that I could help him but the reality is that we seldom really talk with each other these days, and I know that he does not feel comfortable with the idea of getting professional help.
As we approach another weekend I hope that this is the week that things change. I am not sure how much longer Adam can continue to face this pressure without help before he breaks.
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I wouldn't be surprised if many families with children with additional needs and disabilities can relate to this post. I think this blogger would really appreciate any support or advice you can give.....
If anyone else in the world of SEND has something to write that they don't want to be identified for, whether that's difficulties with relationships or the system or anything else, please do feel free to get in touch - email, Twitter, FB, whatever suits. Happy to help where I can.
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