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Your comments about the restaurant really struck a chord. We’ve just done our first Direct Payments ‘respite weekend’ (of four a year) when we went off with eldest son and left H with two carers, who took it in turns to look after him. It was great – we were able to visit restaurants without checking first that they a) serve gluten free chips b) contain no small crying children and c) serve food within 10 minutes of ordering. At one point we all sunbathed, with our eyes closed! (not in the restaurant, that would have been weird, however happy we were…) But I found myself mentally checking all the things H would have enjoyed if he’d been with us (and there were lots of them). He had a great time at home, going on outings and visiting McDs. But even though I know it’s good for us, and particularly for my older son (who said at one point ‘It’s so nice to be able to TALK to you’) I still cannot shake off a sense of guilt – exactly as you describe. It’s very hard to admit that, in general, I have a more relaxed, more carefree time when H isn’t there.
Thanks for acknowledging this. It’s good to share these things.
Dear b’s dad, you are a family of 4, and although your set up is not typical, you all cope well.
Don’t beat yourself up about enjoying a few moments just as a 3. That’s all it is and just in a neurotypical family of 4 there will always be moments with just one child also.
I know. You’re right. Thank you.
Hey there, thanks so much for your honest post. My little one is about 2 years behind emotionally, and it is SOOOO hard. I can relate to all that you said. My guy isn’t on the spectrum but he is delayed significantly, and is just starting to feel embarrassment which I too consider to be fantastic. Please keep being honest and open, I must not be the only one that finds it helpful!!
a) from what i have read, in past few months of following your blog, i am often awed by the coping abilities of all
b) from what i have read, it seems there are many times when b, by necessity is the focus of attention…?
….it seems reasonalbe that the other child is the focus
….it seems reasonable adults have similar time..
i wonder too, the more often someone/anyone, is the “focus”…do the times increase when they feel the need/obligation to “be” the focus? i know this is not the same, but maybe it is “just a bit”…Think of the working person, who is very very concientous…a good problem solver … a hard worker…Well, co workers/bosses naturally bring this person their problems to consider.. Soon this person is going home (a bit overwhelmed)…needing a break..
Love the posts, all of them! It took our daughter going to a boarding school for autistic children to realise how much our son (who has Asperger’s) needed our help. I am like a child at the toy shop window as I peer in and wonder what it is like to have a ‘normal’ child. Try taking two adults with ASD to Spain and then explain why they can’t go to Frankie and Benny’s in the airport? BUT WE ALWAYS GO TO ****, yes but if we go we’ll miss the plane! and? I haven’t been forgiven yet!
Don’t feel guilty about enjoying the evening, your older son has given up the space under his cabin bed to share a den with his brother, he deserves a nice evening with your undivided attention! It’s important for him to spend time with the two of you doing things his friends take for granted. As I tell my older son “you are special too”.
I’m pleased the school allow B to have the run around the playground time, I think a lot of children would benefit from that in reception. My friend’s NT son would sometimes jump up from the table if he’d been concentrating really hard and do a couple of laps of the room to relax his brain as he put it.
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