This post is now available in the ‘Life with an Autistic Son’ ebook available to download from Amazon.
well, i have no advice, but it sounds like you and your wife need
maybe it helps for you and your wife to know that people (many at least) do not/will not judge you/her somehow deficient for realizing the difficulty of the situation?
on similar note, is there anyone/anywhere that your son may spend a few days/week for respite?
on a regular basis?
too much togetherness is not always a good thing, even when there are not difficult challenges.
Hi. Thanks. We have a weekend break planned soon and are seriously working on both boys spending the (first ever) night staying with Nanny and Grandad.
Oh how we have lived what you describe. There are many things I could say but I won’t. Instead I will say but one thing and that is there is SO MUCH neuro development that is going to take place inside your son’s brain and it will help with SO MUCH of what is happening now. I need to write a post about this, I was just telling my husband not an hour ago this very thing. The difference a decade can make is simply staggering. My best to you and your wife. 🙂
Thanks. I’ll look forward to that post.
Well done for posting this. Life is harder at the moment for some reason. I think the school break is disruptive for our 4 yr old boy. he has a similar need to be in control and vigorously resists transition from one activity to another. My wife and I are just passengers at the moment. The evenings take forever for him to settle and he constantly removes his nappy. There’s not much light at the end of the tunnel right now. I need to go to work in the day and it is a lot for my wife to shoulder during the day.
Stay strong. Thanks for sharing.
Rollercoaster; ups and downs, swings and roundabouts. It’s a bad time, but you’ll get the better times again. Just hang on to your hats 🙂 You know I know about PDA (I’m assuming here that you have read my blog at some point and that I’m not just a stalker to you… gulp?!) and I get it. How do we describe the difference between that and being naughty? It’s a question I’ve asked myself so many times. But we know. We get it. Even when others don’t. And sometimes it’s easy to lose sight of it for a bit – but you’re right, it’s just a case of steering that car back onto the tracks (I love the analogy. It’s the one thing I was completely rubbish (as in actually, for real!) at when at Disneyland though…!!). As my girl gets older I do see that sometimes she is being naughty, and she needs that discipline – it’s just that those times are faw fewer than with an NT child. It’s not intentional. We need to remember though that every parent has those good and bad times, the times when you’ve been pushed so far that you want to shout – we just know the consequences of doing that with our children are that much worse. So deep breath and chin up – an extra trip to McDs might help?! (well it does in our house!!!)
p.s. would love to share a coffee with you and your wife… I’m up your way between 3 and 4 on Wednesday, don’t suppose you’re free??!! Now I do really sound like a stalker, eh?!
Hi sounds like you’re having a bad week. It happens. Sometimes it’s hard to get back on top. I occasionally experience a tidal wave of negative emotion and I find it more scary than anything my son gets up to, because I know my strength is so important. Obvious suggestions but try and get a few early nights, top up on your sleep. Try and switch off and think about something else for an evening, get a film out and force yourselves to watch it. My little man has been poorly past week and he seems to regress when this happens, not just during a lergy but several days before it. Failing any of this, maybe some beer/wine/baileys* would help. * delete as appropriate (or not!) 🙂
Hi, have emailed you!
Reblogged this on multicolouredsmartypants and commented:
My son, who is now taller than me, hit me yesterday. I found myself thinking some of these things. We have been through these exact same phases where every day is a continuous fight and every day is so, so draining; you cannot give an inch because if you do, he runs not just one but a hundred miles. Often, too, it is not just the child’s behaviour but other people’s negative reaction which is the last straw…
This is the reality of parenting a child with autism. I really appreciate the honesty of this blog post.
Thanks for the reblog and the support x
Sorry to hear your going through the mill – had a feeling that you were ie lack of posts recently. My husband can empathise with your situation as he is always on the sharp end of L’s anger. We have been through this many many times. And your wife is right, it is more and more difficult as they get older – been there, done that and have the bruises to show for it. Our L ended up being schooled 210 miles from home age 11 when it got too much for the schools and for us. Drugs help! For L and for us. Antidepressants for me and Rispiradone for L. Horrifying but think of the pain of autism causes L? She says that before the meds it was like having a perminent migraine and flu – afterwards it is almost bearable xx Chin up
You’re spot on about not blogging recently! I shall endeavour to keep my chin up x
Go on your weekend break, turn your phone off and let grandma deal with the problems. If they come back with odd looking clothes on and spent the time eating chocolate, so what! It might help B too! My tactic was to let them go to their room and play on the computer rather than have the computer in the sitting room. Especially if we’d been out cos they (yes I have two children with autism) are on overload and need down time. it helps if they have a desk top computer and a game they love and leave them, seriously leave them to play for a couple of hours! xx
I know our children are very different, but what often works with H when he’s refusing to do something we’ve asked is to just walk away, saying something like ‘ I’ll give you a few minutes and then you are going to put your trousers on’. Having said that, the root causes of his refusals are often sensory or to do with transitions, which is why the waiting period helps I guess, but I wonder whether it’s also got to do with giving him back an illusion of control? The other thing that sometimes works is giving a forced choice ‘ Do you want to wear this T shirt or this T shirt?’ when he’s refusing to get dressed at all. At the risk of having a huge heavy object hurled at me through cyberspace, do visual timetables or timers work at all?
Visual timetables and timers do work and we use them during term time. I think we’ve got to remember to maintain that structure all the time. I think our tiredness by the time the school hols roll round (we both work in schools) means we are more slack about regimes. Thanks for the advice.
Omg this is my son! We are in the process of trying to get him seen by his pediatrician again to get his diagnosis of PDA. I know all the articles you refer to and their condescending self righteous points of view. Ignorance of what it is like for parents living and caring those who have autism is alive and well. Only last week I was astounded by of all people Lorraine Kelly on itv breakfast when talking about ‘this new children’s challenging behavior ‘ melt referring to it as bad parenting. I felt I had to tweet her and to contact the show I was so fuming mad. Even when the professor was explaining how it was a neurological disorder she still insisted that what was required was even better parenting. After I calmed down and stopped my Kelly hating, I realised that through her shear ignorance she was right (no credit should be attributed to the ignorant party), you do have to be a better parent. You have to be a stronger parent, a more tolerant parent, a bloody super sonic all pimped up, best parent ever. And that’s not just for a day, that’s every day. So sometimes you find yourself losing it, going postal and smashing that ornament that to be honest you never liked anyway or whatever else discharges the frustration. The fact is that beneath the outer iron man exterior you are human, we all are. We are also bloody amazing for the job we do every day in caring for these special people. Tell your wife she is amazing, and admit to yourself that you know you are too. Get through another day that’s all we can do sometimes. We are not alone but we are the elite. Want advise on how to be a better, more tolerant super bad ass parent? Ask those parents of a child with ASD. We rock.
Hear, hear! 😀
Feeling your current pain whilst being eternally grateful this stage was 10 years ago for me! The problem is it is so hard to offer relevant advise. I have discovered through meeting many of my sons ASD friends that while there are similarities with each of them there are just as many differences also! There is just no “one size fits all” manual that works for children (or adults) with ASD… All I can offer is an insight into my experiences… Weekend away? I think it’s a brilliant idea! There is no way I would have made it through some stages without the one day a week my son would stay at my parents house (which also taught me he could do things differently and could understand that different people/locations means different rules/routines)… Losing your cool occassionally? I still do! I’ve learnt to give myself a break, to err is to be human and as much as I’d like to think I’m a supermum sometimes (and then some) I fall short… Routine is so important but every school holiday I fall into the same bad habits, routine goes out the window, sleeping patterns go haywire, personal hygiene seems to only be on his radar when in his morning “go to school” routine so the smell that can sometimes emanate from his direction (and his room) is appalling, when will I learn?!?… My biggest offering of light at the end of the tunnel is reasoning, sounds small but oh how wonderful it was when my son was old enough to reason with, some mornings we didn’t leave the house until I we had googled the latest point of contention and shown him evidence that backed up my reasoning (extra time to the morning routine was added when we reached this stage) and yes each choice then became a philosphical/scientific/moral debate but these debates were music to my ears compared with the temper tantrums from before! The only battle I didn’t win was the hygiene one, but this was thankfully fixed by an innocent comment from a female classmate after I had purchased some expensive mens cologne for him and made him put it on in the morning “You smell nice today!” How can I ever thank her? From that day on he took a bath/shower obsessively every morning without debate (when he is at school, this still goes out the window when he’s at home in the school holidays)… Most of my friends comment on how mature he is and how “grown up” his relationship with me is, and while occasionally I do pull out the “I’m the parent so you WILL do as I tell you” card, on the whole I’ve discovered that as his view of everything is SO black and white we don’t have to go there very often, once he has learnt why something is then we don’t have to revisit it again!… With the exception perhaps of “Metaphors” which he will not accept as correct because “how can you possibly state something is something that it is not?” I was glad to discover that it’s not just me that can’t explain this concept to him as his English teacher told me in his last review that they have debated this on many occasions and he just won’t accept it!… There’s my experience but like I said each child with ASD is different!
Today in sainsburys whilst rushing around I noticed a woman talking and hugging her 4 year old son who was in the trolley. I heard her gentle voice repeat items to her son, I watched as not more then a few seconds went by when she didn’t lean in for a kiss and a cuddle. I saw her eyes literally light up when her son pointed at an object and looked up at her for praise and how she literally glowed. I noticed her. And why? Because she looked, sounded, even dare I say it, glowed with admiration for her son. And in that moment, I knew I was looking at a parent whose child is on the spectrum. I just knew. But it was such a moment for me because it felt like we are almost a different breed of parent, a completely different race in fact. I recognised the parent of an asd child before I even recognised the same signs in that child that are in mine. It’s tough out there I know. But my goodness what we are all doing to give our children the best has made us quite simply, Alan puts it, rock.
I love you for that. I do actually love you. Remembering those times when he was tiny, and we would actually connect to the exclusion of the rest of the world, and how he loved that, and he mourns it still. But yes, it’s not parenting, it’s something else. What I do wi my NT child feels more like looking after a pet tbh. Autism parenting is not the same thing as parenting.
Today in sainsburys whilst rushing around I noticed a woman talking and hugging her 4 year old son who was in the trolley. I heard her gentle voice repeat items to her son, I watched as not more then a few seconds went by when she didn’t lean in for a kiss and a cuddle. I saw her eyes literally light up when her son pointed at an object and looked up at her for praise and how she literally glowed. I noticed her. And why? Because she looked, sounded, even dare I say it, glowed with admiration for her son. And in that moment, I knew I was looking at a parent whose child is on the spectrum. I just knew. But it was such a moment for me because it felt like we are almost a different breed of parent, a completely different race in fact. I recognised the parent of an asd child before I even recognised the same signs in that child that are in mine. It’s tough out there I know. But my goodness what we are all doing to give our children the best has made us quite simply, as Alan puts it, rock.
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I was just about to write an ‘arrrrrrrrrrgh!’ post myself when I noticed this one in my feed. Must be something in the air! All we can do is learn as we go, adapt and forgive ourselves the occasional, ‘only human’ lapses in our outwardly capable, cucumber-cool exteriors. Thank you, as usual, for reminding me that ASD parents aren’t alone in the world.
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Pingback: Pathological Demand Avoidance (PDA) and Autism / Asperger’s Syndrome | Women's Asperger's Syndrome Awareness Blog
Hi B’s Dad! I must say you have a lot of patience. Just keep praying and be strong. And would love to see more of your articles.
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