Please give me your opinions, I'm driving myself crazy worrying!

(11 Posts)
Weezy511 Wed 04-Sep-19 13:58:56

Hi everyone,

I'm so worried about my lovely 17mo dd and some of her development. I've felt there's something just a bit 'off' with her development since about 12mo. The HV laughed it off at the time and told me to chill out, not literally but words to that effect.

So basically, her physical development is spot on. Walked at 10mo, runs around now like a looney toon. Can walk backwards, climbs everything, goes up the stairs etc. However, her communication skills are where I'm concerned.

-She has no words but babbles everyday with a variety of consonants, bababa dadadada p, t, s sounds also

- She has never imitated body actions, e.g. If I stick my tongue out she won't copy but would touch my tongue instead.

- She does copy sounds I make e.g. raspberries or if I say 't'

-She has never waved, will very rarely attempt clapping but more like a dusting off her hands motion than a normal clap.

- She has just started to point (with a whole hand) for things she wants now, but doesn't look back and will just cry in the direction of what she wants until she gives up or I get it for her. She can point however, she will use her index finger to 'point' towards traffic light buttons. But it's not like she's telling her too look too it's more just getting her finger ready to push it because she knows I'll wheel her upto it.

- She has also just recently started to follow a point, not always very well but I think she's starting to get the idea.

- The last 6 weeks or so she has also started to walk on her tiptoes a few times a day.

- She doesn't seem to have obsessions as such, she likes things that open and close which could be typical toddler play or not. She doesn't have meltdowns and moves between toys a lot.

- She does play with toys appropriately, her little brother is 10 weeks old and she gives him his dummy /bottle if he cries. She also has good eye contact and will bring things to show me, e.g. a bit of ribbon or her toy cat.

-She also feeds her toy dolls with bottles with out being shown this.

- She does respond to her name usually if she's not engrossed in something.

- She seems to understand some of what we say and follows basic instructions e..g come to mama or dada. Give me.. Time for num nums... Lie down.. No..

I realise writing this down there are a lot of red flags given her age and my gut is telling me there's something wrong. I have already self referred to SALT and when the health visitor came to do DS 6 week check she stayed for an hour observing her and just talking about my concerns which was lovely of her. In the end she did agree to do a referral to a paediatrician so we're just waiting in limbo at the minute.

What I really want to know is if she reminds any of you of your own DD or DS at that age and how they developed. I understand no 2 kids are the same but I just feel really lost and helpless at the moment, so any anecdotes/ advice would be really appreciated!

Thanks so much

OP’s posts: |
LightTripper Thu 05-Sep-19 10:52:17

She reminds me a bit of my DD (though my DD got her words roughly on schedule but was very behind physically: not even pulling herself to stand at your DD's age). She was certainly late to point, wave, etc. and late to use her language to ask for things. She did a bit of heel walking, and tenses her legs when she gets excited (used to lift them off the floor and kind of hover them when she was at the sitting/bum shuffling stage!).

My DD is autistic but does really well with just a little bit of support and even though I think there will be bumps ahead I am still very hopeful that she can lead a happy and independent life in due course. She has friends, goes to mainstream school etc. She is quite anxious but usually manageable.

I think 17 months is very young to diagnose - especially when as you say your DD really has some traits but also some things that aren't typical of autism, so she's a bit of a mix. I don't think what you describe is very behind in terms of language skills (but then our DD wasn't behind either). Our DD started to see a paediatrician at about 2 I think, but wasn't diagnosed until she was 4.

Obviously on this board you will get answers from people whose kids were eventually diagnosed, so it will be a bit skewed - so don't assume that your DD will be diagnosed or have developmental issues: but at the same time I wanted to say that based on our experience so far it is far from the end of the world if she is!

There is a lovely YouTube channel and Facebook group called "Nurturing Neurodiversity" that you might like to join if you want to discuss? It's got a lot of parents in who are at the pre-diagnosis stage of just spotting traits and wondering, rather than having a definite diagnosis.

Weezy511 Thu 05-Sep-19 20:59:18

Light tripper - thank you so much for your reply and the recommendations, I'll definitely be joining.

It's lovely to hear your little girl is doing so well, I hope she's enjoying being back at school.

My dd is definitely a mixed bag, though I'm 99% certain she does have asd. She has moments where she makes me think I'm being neurotic and imagining it, then 5 mins later she'll do something and it's like 'yep, there it is.' Today for example we went to a lovely toddler park, there are little water fountains, all the usual bits and bobs, lots of other little ones etc. Let dd down and she ran straight for the gate to open and close the lock on the gate a million times ha.

I think you've hit the nail on the head, when I think about what actually worries me it's not the diagnosis or label it's the future. If she is going to have additional needs it just terrifies me who will look after her when I'm not around, but I guess all parents feel that to some degree.

OP’s posts: |
Legoroses Thu 05-Sep-19 21:29:37

Hallo. I've got nt kids and one autistic child and I'd say my nt kids do lots of autistic stuff and my autistic kid does lots of nt stuff!

One of my nt kids is a classic serial obsessive. We spent a lot of time watching trains pull in and out of stations...and he's obsessed with maths and numbers, can't stand labels in clothes, but absolutely nt!

I wasn't paying attention to asd stuff but i didn't notice anything different at this 17 month stage between any of them. For example they all ran in circles rather than participate in toddler classes, the nt ones were very behind physically and both referred on after their 2 Yr checks.

So basically what I'm trying to say is that light tripper is bang on when she says that actually lots of nt kids have things that seem autistic.

Also very happy to echo light tripper when she says not to worry about having an autistic child. The world might be shit sometimes for autistic people but your, mine and all our children are perfect, amazing and gorgeous.

LightTripper Thu 05-Sep-19 21:36:20

I went through that phase too of being scared for her future when we are gone. Now she's older I'm pretty confident she'll have friends and be able to manage herself at least to some extent, so those concerns have lifted a bit. Sounds like your DD has lots of strong abilities, so the same should be true for her (plus children can learn and develop a huge amount: if you follow #ActuallyAutistic people on Twitter you'll find lots who are very eloquent despite being totally non verbal as children (or now). And even if your DD isn't able to be independent you have a lot of time to sort something out.

Nobody really knows what the future holds for their children: there are lots of ways neurotypical children can come unstuck or just have life shit on them too. Just take it one step at a time!

If you look on YouTube for a channel called "Walkie Talkie" Speech Therapy her newer videos are more "salesy" but her older videos have some really good examples of playing with toddlers/little kids to encourage speech (basically really over the top "fun" and engaging) - might be helpful if you are worried about DD's language until you can see an SLT (though like I said, it doesn't necessarily sound that far behind to me?)

LightTripper Thu 05-Sep-19 21:39:54

Totally agree on all counts Legoroses! My NT (I think) child is actually behind where DD is in language, and much more fearless and risk loving, more likely to do crazy running off - all of which are supposed to be autistic traits!

But nobody seems concerned about him because he is a very effective communicator in other ways (OMG the DRAMA!) Honestly in many ways my ND DD is much easier to parent so far! All kids are different and bring their own parenting challenges (though obviously some more than others: not claiming it's a walk in the park, and I know in many ways we are very lucky with DD, though I can see her traits might make teenage years really challenging: but as Legoroses says, she is gorgeous, lovely and amazing, as is my son, and I'm very lucky to have them both!)

Weezy511 Thu 05-Sep-19 23:16:09

I’ll add that to the list too light tripper, thanks.

It’s interesting to read both your experiences. I think what ultimately has me convinced is dd’s communication; she doesn’t have that natural joint attention that I see other babies and toddlers using back and forth so naturally. it’s almost like she just doesn’t see the point in looking over because she’s totally content on her own.

I visited my friends house whose dd is 3 weeks older and couldn’t believe the difference. Her dd has no words yet either but I was in no doubt what she was telling me and moreover wanting to tell me. She held up every toy and checked I was also appreciating them, came over and pointed to her toes then my ds’s toes as if to say he’s got those too.

I definitely agree we’re lucky to have them, would be nice just to have a crystal ball sometimes!

OP’s posts: |
ShiftHappens Fri 06-Sep-19 08:19:54

She seems to understand some of what we say and follows basic instructions e..g come to mama or dada. Give me.. Time for num nums... Lie down.. No..

what do you mean with 'some of what we say'. Can she follow simple instructions consistently? Has her hearing been checked?

From what you post (mentioning eye contact etc) I guess you are worried about ASD. Google M-chat. It's an online screening tool (screening, not diagnostic) to identify children who may show signs of ASD. If it flags up anything, I would run it via the GP. Avoid the HV (speaking from experience).

Weezy511 Fri 06-Sep-19 09:30:57

Yeah she is consistent with very basic instructions. I took her to the gp and they checked her ears, she was mid screaming fit at that point, so the gp said there was a bit of redness but that’s usual for a crying baby/toddler.

She can hear a key jingle from across the house so I don’t think her hearing is the problem.

Thanks, I’ve just done the mchat and it said ‘risk for autism +’ then two bar charts with a 90% chance of development delay and 50% of autism. Gah, I think only time will tell. I’ve just been reading about the triad of delays for autism but I think she’s ok for her age in the social one. She does watch kids at soft play and approaches them, usually to rob them of a toy but again that’s just toddler behaviour. I think that one will become more apparent over the next year if she doesn’t begin to play with kids.

I’m not sure if this is typical of autism but I feel like she doesn’t have a sense of her own body. She doesn’t copy facial expressions and if I clap my hands she will put her hands between mine so I do it for her. Yet when she’s moving about she is very dexterous and has excellent fine motor skills when eating or playing.

I’m taking her to a nursery today to see how she does in the room before deciding to sign up or not. Do/did any of your little ones go to nursery? I’m hoping it might help her socially but her happiness is ultimately most important.

OP’s posts: |
ShiftHappens Fri 06-Sep-19 09:57:27

Do/did any of your little ones go to nursery? I’m hoping it might help her socially but her happiness is ultimately most important.

mine did (she has autism and severe LDs) but it didn't do anything for her development. I only sent her because I had to.
If a child has ASD, then nursery is not a cure and won't improve things.

LightTripper Fri 06-Sep-19 09:57:54

DD went to a little playgroup thing a couple of mornings a week from when she was 2, just to get used to it. Then started pre-school 5 mornings a week at 3.5 and full time at 4. She always seemed to enjoy it, and I do think it probably helped her social skills (partly as they had a SALT visit once a week).

Different autistic children can have very different traits. There is another Mum in my "birth month" FB group whose daughter is also autistic but when they were growing up although we were both worried the girls were very different: her DD is very social but has more sensory issues. My DD doesn't seem to have so many sensory issues (or maybe just less obvious ones: sensory avoiding rather than sensory seeking/oversensitive rather than undersensitive), but was always less engaged socially. We also know another girl from DD's pre-school who was very late with language (and still goes to SLT at 5.5 and has some issues) - but I remember even when she hardly had any words at all she would play with other children more than DD (with a huge vocab) - who was more happy to do her own thing on the side or just watch the other children.

This cartoon explains it well I think - when I started to read about the spectrum I had this image in mind of a line from "mild" to "severe" but it's not that at all.

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