frustrated, confused, annoyed and worried

[Rillyrillygoodlooking]

Not sure how to say this without going into a whole boring story so will try to be brief.

DS, 3.7, is hard of hearing. For a long while now, we and a few health professionals have had our suspicions that he is on the autistic spectrum. When DS was about 18 months, or younger the SALT in the UK categorically said she thought he was autistic.

Now, we have moved countries and the health professionals here are umming and ahhing about whether he is or not. Our Advisor for Deaf Children here is deaf himself so has quite an interesting take on DS's habits, behaviours etc. There is a lot of cross over between ASD and deaf children's behaviour. DS exhibits some of these, and others that wouldn't necessarily be attributed to deafness.

We are getting lots of help here, two different Teachers of the Deaf, and now an Early Intervention Teacher to specifically help with DS's playing and social skills.

I am so grateful for all the help but I am really struggling to get my head round it at the moment. If DS isn't on the spectrum, then is there developmental delay, or is it behavioral? Or am I just a crap mum who let him get away with not taking his own shoes off for a very long time, for example?

I am frustrated about the situation and the long debate that has been going on in my head for what seems like the whole of his life (he didn't smile until just over 12 weeks old, it nearly killed me at the time). Over all I don't have a lot to complain about but the stress of it is doing my head in at the moment. I am also worried that when we move back to the UK we won't necessarily get this kind of help without a diagnosis of some sort.

I am waffling, not really sure what I am asking, but I need to get it out of my head.

Poor you. How bad is your DS's hearing loss? Does he use hearing aids or sign language? I have a moderate-to-severe hearing loss, and use hearing aids. My mother found my behaviour enormously challenging until I was about 5 or so (then again when I was a teenager, but just for the usual reasons then!) Obviously I don't know your son, so have no idea if he could be autistic or not. But now I have my own (hearing) children, I can see how different things were for me - since I just didn't pick up on all those verbal cues/messages etc. etc. I just didn't get cued into what my parents wanted me to do, in the way that I see happening to my DCs. And I was living 'in my own head' a bit more. So nearly every instruction/request etc. came as an out-of-the-blue command - which toddlers do not respond well to! But as I got older, more used to the hearing aids, more generally aware, this problem died away. Hoping that it will be the same for you too.

Thanks for giving me your experience wolfhound. Its good to talk to people with hearing loss as I find it difficult to put myself in my son's shoes.

DS has moderate hearing loss, he has had hearing aids since he was six months old, and now really appreciates having them. We didn't teach him sign language as we wanted to concentrate on auditory verbal communication. He seems to struggle with copying movements so perhaps sign would have been difficult to learn. I am learning it myself at the moment because I have encountered many more profoundly deaf people who use sign and would like to be able to talk to them. Perhaps when DS gets older he may want to learn as well.

But, there are some behaviours that come across as something more. He is quite obsessive with things, like numbers and letters, and is not very good at all socially. Also his communcation skills aren't good, as he doesn't seem to want to talk socially, or perhaps can't. For example, he didn't use yes and no until we spent a lot of time teaching him and even now he doesn't really say them.

Hi Rillyrilly, yes, those behaviours sound different from my personal experience. I don't know that much about autism (though I think there is a board on here with parents who know a lot about it and might be helpful).

With a moderate hearing loss and hearing aids from so young (I didn't have them till I was nearly 3), I would think he is very likely to be able to communicate so well when he is older that few people realise he has a hearing loss. Of course, if he is on the autistic spectrum then those challenges will interact with his hearing loss (as any combination of disabilities does) to make some things harder.

Anyway, my feeling is that if he is not on the spectrum, and it is only the hearing loss that you are dealing with, then things will improve (and radically) - and you sound like a great mum. You are clearly doing everything you can to get the right help and support. Don't beat yourself up. You and your DS are in this for the long haul, don't exhaust yourself now. You love him and support him, that's the important thing. One small thing, I would say - is that he needs to feel accepted by you, so try not to get so worried about him that you give him the message you are dissatisfied with him. The great thing about having a hearing loss from birth (as opposed to being deafened later in life) is that your brain just grows and adapts to it, so that you are able to deal with it in a very natural way, and the way your DS deals with it age 5, or 10, or 15, or 20 will be enormously different.

Best wishes for you getting the answers you need and the right help back in the UK.