Published on 12, July, 2020
I've come to this page because I need help - we need help.
My 8 year old boy who was born VERY premature was finally diagnosed with asd and sensory processing disorder this week, to go with the existing diagnosis of anxiety and growth hormone deficiency. His behaviours (80% of them to do with his asd and anxiety) have really affected the family dynamic. My wife can't cope anymore and the last year has been tough all around.
Although we are relieved that we now know what we are dealing with, since his diagnosis things seem to gave got much harder. We don't know what to do. I've shown my little boy some age relevant videos relating to his diagnosis, I've read him books related to anxiety and autism, but I just don't know what to do besides this. My wife thinks we should separate so that we can both have a break from our sons challenging behaviour by sharing our time with him, but I want to fight for our family.
Now I understand why my son behaves the way he does, my anger at his behaviour has turned to (I'm ashamed to say) pity. I hate that I feel sorry for him, and I hate myself for ever being angry at him. My wife's at a different stage and she just can't cope and this is causing more of a rift as I'm trying to do my best for everyone.
I didn't know what else to do but share how I feel. It's probably not appropriate and is definitely a breach of mine and my wife's trust. We still love each other but we can't go on this way.
Thanks for listening x
Not going mad, and sorry to hear you are facing challenges that are putting a strain on your marriage, can she not just take a holdiday by herself if she needs a break? It sounds like she is having a very extreme reaction when all she really needs is a rest. Understandably when she had your son she probably didn't envision this is the life she would have, but we have to be prepared to love our kids no matter what. That is the responsibility placed on us by having them. You haven't said what your sons behaviours are, so presumably there was a time you noticed them develop and a time they escalated, the good news is behaviours can change, but accepting your son will always be autistic is the first step to understanding if new ones arise. It's not enough to help your son understand the way he is, although it is gret that you did and didn't hide it from him, can you either get him to see a child therapist who understands autistic children or would you benefit from trying to tailor neurodivergent self help therapies and see what your son could implement on his own level of understanding?There's a book: https://www.livedexperienceeducator.com/store/p/neurodivergent-friendly-workbook-of-dbt-skills That might provide a foundation for trying to help your son work through his issues, just bear in mind I am pretty sure this book is aimed at adult readers.
Thank you so much for your reply. My aim is to help improve all of our well being in the coming weeks - a holiday would certainly help her but her emotional state isn't conjusive of rationale at the moment which doesn't help- I feel like she wants to punish herself and won't allow herself the rest - which in turn has a huge domino affect on all of us. I think she blames herself for his prematurity (ridiculous as that sounds) and feels guilty.
My sons main behaviours / concers are:
Anxiety to the MAX - fretting constantly for hours on end despite reassurance. Typical daily tasks aren't easy
Not following basic instruction - a simple task can take an hour!
Hyperactivity
Refusal / inability to settle in bed at a reasonable hour
Waking up extremely early (exacerbating our frustrations and tiredness)
Temper tantrums
Fixation on certain topics / subjects.
He got worse around 2 years ago, but I feel like I notice a deterioration in certain things every day.
I've got to the point where we have so many appointments each week that I worked rather think how I / we can do our best to help him. My bond with him since his diagnosis is stronger than ever - I understand him now.
I know I am a third party and cannot give solid advice, but what I can advise for your wife is that your words are coming on deaf ears. Not your fault and not hers either. But if it is guilt that is driving her, it might help if you (secretly, maybe) get her friends and family to "suggest" the same thing you do. She might suddenly start to listen if it comes from someone outside the stressful circle, you know? You could even arrange a family meeting that would get her to go away even for a couple of days so she could rest.
I know I said I did not know how to advice about your kid, because you really described ME at that age (lol) creating stories was always a favourite thing I loved to do. When I woke up early, like your kids, I would play with my toys for ours, I played the same way, every day. As I got older it became more surrounding with drawing and words.
Thank you - I definitely need to take a tactical approach to things so far as she is concerned - she's very stubborn and generally wont accept help. If I can't help her then I need to make sure I'm at least helping myself and my Son, so at the moment I'm putting as much effort into him as I can, as the world is confusing enough without him worrying why his Mum and Dad aren't happy.
I definitely think we both need more time away to rest and recover - despite never being diagnosed as Autistic, we both have numerous traits ourselves, and I think we are both at 'burnout' - Our son's diagnosis has given us more questions than answers at the moment, but we need to be patient and measured in our approach to things moving forwards.