In my hour of darkness

My wife recently accused me of not liking B and not wanting to spend any time with him. This was both hurtful and untrue, but not without foundation. In the book ‘Unstrange Minds’, the author talks of how he used to feel guilty about his relief when his autistic daughter was asleep. I can relate to this, because sometimes, when it’s so, so difficult, I find myself struggling to cope with even being in the same room as B.
That’s a horrible admission for a child’s father to make, I realise. But it gets too much sometimes when I’m exhausted and the screaming won’t stop and B is getting distressed and I don’ know how to comfort him.
Recently B took to waking up screaming. It didn’t last long- less than a fortnight- but while it did it was a horrible way to be jolted from your sleep and would set the tone for the day. He has to be handled so carefully. ‘No’ is almost a forbidden word in the house because it usually results in an instant melt down. B frequently dictates what goes on in the house. If he doesn’t like a TV programme his brother has put on, it goes off. If he wants the song changed on a CD in the car, it gets changed. I’m probably getting it wrong in conceding so much to his demands but it’s our way of surviving.
B has very habitual behaviour and is constantly messing with things he shouldn’t really have. He will pass a hundred toys to press a button he has seen, and get distressed when he can not do so. Yesterday B’s mom said, “It’s relentless”, which sums it up as good as anything.
So, in my darkest moments, I do wish I was somewhere else or didn’t have to deal with him. I love him dearly but I’m learning to cope, and while I don’t know how, it can look like I want out. I don’t.
While I’m being honest with myself, I suppose what I want is what I have with B’s brother. When I look into his brother’s eyes, I feel like I know the boy, that I understand him and that I connect with him. I do not feel that way with B. But I’m working on it and we’ll get there.

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6 Responses to In my hour of darkness

  1. Stephen says:

    Hi,

    I know how you feel I too feel the same way about my son, he’s 7 was diagnosed when he was 3. There are days when I’m glad he has gone to bed, because the relentless day can calm down.
    But now he is older I do find that there are more different days, some days he’s very Autistic other he’s less so.
    What we’ve found that helps is when he started to go to a specialist playscheme and a specialist school (the school has been really helpful). They start to teach him a routeen, give him structure to his day, which is what he wants as that gives him the security he likes.
    There are days when you don’t like them, but its not the child you don’t like its the condition, but things like PECS (help them communicate and you to communicate to them), a timeline, schools, playschemes and respite care all help. Its well worth looking into those things now while your son is young. It takes a lot of pushing and persistance but these things are there to help. The NAS can help point you in the right direction.
    So while there are days that are worse than others, there are also good days and with help these good days come round more often than the bad ones.

    Good luck, keep posting

    Stephen

  2. Spectrum mom says:

    We went through issues like what you describe also. Our son is getting better at sharing, turn taking and the word no now. His school and seeing a private therapist have helped. Our son is 7. What age is your son?

  3. Duncan MacGillivray says:

    Can relate to what your saying here, have a similar feelings with own son,A, who is 5 years old.
    Life can be very intense and most days feel have a mountain to climb. My son has quite severe
    autism and developmental delay. The group dynamics with his brother ,7, and sister ,3, are difficult and he does tend to dominate life at home. On plus side his siblings are showing a level of maturity and understanding beyond their years at times. I have moments of despair each and every day and often look forward to some “me” time when kids are in bed.During day you need some time to yourself and should not feel bad bout this. Just discovered your blog and am enjoying it. Keep writing!
    A’s Dad

  4. ruth kendall says:

    Thank you for writing your blog. I’m feeling very much like you today. My son is 22 months and does not yet have a diagnosis but has all the same traits as you wrote in the list for your first paed appointment. I’m finding life so hard at the moment, particularly as he is my first child and looking after him feels so over-whelming and unrewarding. i imagine you can get pleasure from your other son on bad days. What advice can you give me for keeping hopeful?

  5. B's dad says:

    I can only speak for myself, but I found that throwing myself into reading about autism, pushing for a statement, applying for DLA, fighting for his school placement, pestering the authorites (and other things) gave me a sense of doing something. The day to day is difficult and I still, a year down the line, find things very difficult. But at least I feel a little less helpless than I did because I feel that the things we’ve done have moved us forward.
    I’d also recommend reaching out for support. The Mumsnet SEN section is a fantastic place to get support and realise we are not alone in this. You might have local support groups too. My wife says look into portage. Get referrals as soon as possible. Push! None of this solves the everyday problems but its something, at least.

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