unjustifiably irritable

[theDudesmummy]

I should be pleased with how things are going but I seem to be going through a low patch and feeling irritable, and worse, sorry for myself. The whole thing of thinking how things might have been, really. My DS is turning 5 next month, other five year olds are waking their parents up by talking to them, asking for breakfast or whatever, they are communicating with them, telling them they love them, they are reading a story at night and saying good night.

My DS communicates (just single words so far) by typing on a small computer with text to speech software, and this morning all he would do is type the name of his nanny over and over again to wake me up...even though she is not coming today. He CAN type mummy, and many other words, but he wouldn't. Just her name, literally hundreds and hundreds of times until I wanted to scream. I just felt so sad.

I have a friend whose little girl is the same age as DS and when she comes around she is so cute, asking little questions, chatting to everyone nagging her mummy for things she wants....And my DS just wakes me up by saying another woman's name over and over again hundreds of times...

I shouldn't feel upset, I know, but i do.

That came across as so incredibly weedy and sorry for myself, sorry about that, feel free to ignore the pity party!

He's only been able to type for a very few months and everyone is very excited about it, at least it is far far more communication that we had before (no verbal and signing really poor). So generally I am supposed to be feeling positive. But sometimes it just hits you: yes it is great that he can communicate to a degree and even tell me what he wants for supper (and nag me incessantly for people who are not here) etc. But its not exactly a conversation....and it is so far from what other five year olds do...

Thanks for the honks! Some days you need them more than others...

Have cake and coffee things can be incredibly hard . I think birthdays can be really difficult honks

Thanks for the sympathy. My DS is so sweet and loving, and I know he tries so hard, but at nearly five he is still like a two year old in many ways (including in how much attention and supervision he needs), and it does get to you some times! He's progressing, no doubt about it, but then so are all the other children, and quicker.

Honks to everyone!

I think sometimes when a milestone is hit or big progress is made it can hit harder.

When ds said 'mama' last month (his one and only word ever), it was, of course wonderful, and everyone was over the moon, myself included. At the same time, privately (because it seems churlish and bloody miserable) it made me very sad. People kept saying, 'well that's it now, it will all flod out' and 'I knew it was there all along' and I smiled and nodded.

But part of me felt sad that it had taken until nearly 4 for ds to even make a babble that sounds vaguely like mama, and part of me knows that a flood of language isn't going to burst forth and that actually what has been more huge has been his desire and ability to communicate without words.

It feels wrong to even have typed all that, because it feels like I am doing ds a disservice, but here (hopefully!) it is ok to be happy/sad when everyone wants us to be happy/happy!

I get you. DS2's 5th birthday hit me very hard. I just felt so incredibly sad for him. It was that period when it really sank in that This is it, then. I'd not been in denial, but there was always a glimmer of hope that just seemed to get stamped on very hard by his looming birthday.

He's 8, next month and I do still have moments of sadness for him, but I'm beginning to see glimmers of the adult that he will become and, while it's not what any parents would expect to choose off a menu in their vision, I can see him becoming a happy adult and making people happy, too.

Hazey that is so close to what I feel. Everyone is so enthusiastic because of DS's recent progress. Until four months ago he had never communicated meaningfully apart from a couple of approximated signs for foods, and saying "yeah", sometimes appropriately and sometimes not.

Now he can type dozens of words, including Mummy, mostly appropriately (except when he is nagging for people who are not present and I cannot magic up for him!). Wonderful! Amazing! Such advanced typing for a four year old! Everyone's excited. Well....yes, of course, and of course I am happy, but...it's slow slow incremental progress and nowhere near anything like the communication of the other children his age. No, he's not suddenly literate. No, it's not an "amazing special skill". It's good, it's progress, but the fact that everyone has to make such a fuss about it (friends being so nice, wow! that's amazing!) in itself can make me feel sad. No-one would say it was amazing if my friend's DD, who is exactly the same age, came up to someone at dinner and said "daddy, daddy daddy" twenty times over. But when my DS does that on his computer it's to be exclaimed about....

I know exactly what you mean. Yes, it does seem to me too like I am doing not only a disservice to DS but to all the people who are working so hard to get this progress (his tutors, his ABA consultant, the teachers, the TA, the family, the nanny, all working so hard and so enthusiastically). Of course I would rather he communicated than not. Of course it's great he can type. But some days the feeling creeps in of...if only it was all just ordinary and unremarkable. No-one saying anything about his progress, no-one exclaiming over him, because he was just an ordinary little boy....

Oh dear, I am sorry that was so long. If you have read it all, thanks!

Ouryve, yes I think five may be hard because most children are really communicating and part of the whole family conversation by this age, they are not babies any more. My DS is by no means a baby but he communicates at the level of one, even if his understanding is above that level.

I know what you mean by "this is it then" I wasn't in denial either but was somewhat pulled in (or wanted to be) by the stories of children who "lost" their autism, who became verbal from being nonverbal with ABA, who turned out very differently from what had seemed to be the case at first. With DS I think the reality now is that there is going to be slow and steady progress if we keep working at it as hard as we have been, and I am sure his communication will improve, but there will be no "eureka" moment, no "cure", and...no speech...which is very hard to accept.

I complete get this. I think it's almost like you get so focused on a goal - trying to get them to do x or y, and then eventually they do and part of you is so pleased they have achieved the goal but I think at the same time when they have achieved the goal it gives you time to breath and reflect and that's when you also feel shit that x or y ever had to be a goal. And I suppose you also realise that x or y isn't all it's cracked up to be - if only my DD could walk with a walking frame... Becomes, what a shame my DD can only walk with a walking frame, if only she could walk unaided...

And so it goes on, and will keep going on. So DO celebrate the successes, they are amazing, but don't beat yourself up for feeling sad about it at the same time.

Honk honk x