My nearly 11 month old hasn’t hit some major milestones and HV doesn’t seem to care!! Any advice??

[lulubeanie]

Sorry if this becomes a lengthy post, I’m at my wits end and my HV doesn’t seem to care at all!!!

Some background: my LO is 11 months on the 1st of July, natural birth, no complications. Only issue we ever had once she was born was a suspected CMPA, in which she was put on Aptamil Pepti from when she was 1 month old, and took to it very well and has been on it since.

We started weaning at 6 months. She did not take to it at all, she absolutely hated spoons, would lock her jaw, turn away, push any food we’d sneak in, straight out of her mouth. HV suggested BLW.

We had no success with BLW. Called HV again when she turned 7 months, as she still hadn’t made ANY progress with weaning. Was told that it’s ok, food is just for fun at the moment, and to keep trying, and that I was doing everything right. I also mentioned to HV some concern at her lack of babble at that stage, as she made little to no noise, ever, except crying of course. I was told not to worry about anything until her routine 10 month check up, where they had certain milestones that they’d want her to hit, and if she hadn’t made any progress with weaning or those milestones, we’d get support/look into it.

We had her 10 month routine HV appointment on the 6th of June. We expressed our concerns, which were the following:

• she’d still made very very little progress with weaning. She will have one bite of a chip or melty stick and that’s it. Hates anything else. Will just squish and play with food, never eating it. This has been the same since 7 months.

-little to no babbling. Has only very very recently started to say ‘ba’ but we think this could just be teething related. She squeals and coos lots now, compared to being completely silent at 7 months, but there seems to be no progress with starting to speak.

-her social skills are non-existent. She has missed most social milestones since 8 months. For example:
-she doesn’t point
-she doesn’t engage in peek a boo, or any sort of game like pat-a-cake.
-she doesn’t clap
-doesn’t respond or show interest when we mimic her sounds that she makes
-doesn’t understand any sort of commands or language
-doesn’t give us objects when asked, just looks at us puzzled or ignores us
-rarely responds to her name
-doesn’t sleep through the night
-there’s more but I can’t remember. She failed 2 of the categories on the questionnaire the HV asked us to fill out to check her progress.

she communicates needs by crying. She’s hit her physical milestones out the park, she started taking her first steps a couple of weeks ago, started crawling at 7.5 months and can now slowly walk across the room now with a few falls here and there. She will crawl or walk to us if she wants picking up, comfort or feeding but will not communicate in any other way except crying or whinging.

At LO’s 10 month routine check-up, my partner and I expressed deep concern about our baby. All our friends babies are nowhere near as behind as her socially but HV brushed us off. She said perhaps because our LO hit physical milestones so well, that’s why she’s behind on others and it’s of no concern to her. When I argued this, and said that even so, we were told 3 months ago that if she hadn’t hit these milestones we’d have more support, she just said give it another 2 months and we’ll look into it. I also expressed concern for my baby’s lack of weaning because, again we’d had no progress and I’m worried she will get poorly due to lack of nutrition, and was just told she’d be fine, they want her to be on 2 bottles and 3 meals a day at 12 months so for now it’s fine. But how can we get her to that point if no one’s going to help us???

I went away from that appointment in tears. It doesn’t feel like my HV has or ever will take us seriously. I feel my baby needs a referral to be assessed, as something isn’t quite right. I’ve sat every day, for 3 meals a day trying to wean her. I’ve wasted what must be hundreds of plates of food of all kinds. I’ve had no progress. I’ve sat in front of her for hours, in a quiet room with 0 distractions trying to get her to engage with me and communicate with me. I’ve had no progress. I’ve worked so hard to give her a routine for sleep, and have slowly removed any and all sleep associations. She will still wake up 2-3 times a night, once for a feed, another 1-2 times because she’s wide awake and can’t sleep.

I don’t know what to do anymore. Nothing seems to be getting better. I love my little girl to pieces and I wouldn’t change her for the world but I think I’m failing her. I’ve searched for answers for hours online. I’ve spoken to my GP and HV multiple times but no one cares. I feel hopeless. My partner feels hopeless. I knew motherhood was no walk in the park but I didn’t think it was going to be this hard. It feels like every milestone/development that isn’t physical has been an issue/battle for my baby.

i got diagnosed as High Functioning Autistic this week. I worry she could be Autistic too, but according to my mum I didn’t have any issues with weaning/social milestones like this when I was LO’s age!

Any, and I mean ANY advice would be so so appreciated. I don’t know where else to turn, I don’t know what to do anymore. I’m worried if I leave it another 2 months like HV said, that it’s just another 2 months of my LO not getting the help and support I think she needs. I don’t know what to do anymore!

Make an appointment to see your GP and tell them everything you have written here

HV are gatekeepers but they aren't the only way to access other services

It may be something as simple as tongue tie that has been missed or there may be more to it but you are clearly concerns, you have evidence as to why your concerns are justified -you absolutely have the right to ignore your health visitor at this point

I’m so sorry your HV didn’t hear your concerns and reassure you. There is support out there. At your childrens centre there will be a session where there is a speech and language therapist. Usually called Chatter time. Give them a call and find out when it is. Attend a session and speak to them. She will need her hearing to be re checked too. Ask your GP to get the ball rolling. Good luck.

I will probably cause offence here but in my experience health visitors at best vary greatly, and at worst are no better than having quick search on Google yourself, they really quite often don't know what they are talking about. I'd also suggest trying elsewhere such as the GP (but bearing in mind they too can be pretty rubbish with this sort of thing, it really depends on the GP) emphasising that you too are autistic, her allergy and difficulties with food and social communication concerns.

The food for fun thing is actually not true. Children do need certain vitamins, nutrients and minerals in their diet beyond what they can get from milk alone.

You do sound very anxious, and some of your concerns do sound typical (eg not sleeping through night) but taking them all together I think it's reasonable to take further advice. I expect you're being fobbed off as she's still v young.

Autism is increasingly being linked to poor gut health, much of which is populated from the parents (particularly the mother during birth) with other environmental factors affecting this too, so as you are autistic yourself this is both relevant and worth looking into further.

I wonder if she might be deaf. Does she respond to large bangs etc out of her sight range?

Most additional support requires referrals and they often won't see such a young child until they reach a certain age. E.g. at my sons 18 month check, he wasn't speaking at all, they knew they wanted to refer him to SLT but here they don't take referrals for children under 2 years, so we had to go back at 2 and then they referred him. Also at a young age, things can and do change very quickly sometimes, she could potentially develop a lot in the next 2 months

Go to the GP. I had some concerns about my toddler and I tried seven times to get in touch with HV over Covid. They were furloughed! Which is outrageous. Then when they did come back they were phone-only. I tried them again recently and they directed me straight to the GP anyway.

It was a real shame as one of the issues I tried to raise with them (when they were furloughed) now requires a surgery which could have potentially been avoided if I’d managed to raise any help early on. It’s not entirely their fault, I went to the GP too and was ‘seen’ on the phone and essentially told I was an anxious mother. Which I’m absolutely not. 🤷🏼‍♀️

“I’ve spoken to my GP and HV multiple times but no one cares.”

^Well not sure what to suggest if your GP isn’t concerned at this stage either.

To be honest a lot of what you have posted wouldn’t be much of a concern at 10 months. Not sleeping the night isn’t a concern at all.

@ringoutthebells

Autism is increasingly being linked to poor gut health, much of which is populated from the parents (particularly the mother during birth) with other environmental factors affecting this too, so as you are autistic yourself this is both relevant and worth looking into further.

There is limited evidence. Trials and studies are so small they are all but pointless.
theconversation.com/gut-bacteria-dont-cause-autism-autistic-kids-microbiome-differences-are-due-to-picky-eating-170366

In my area you can self refer to salt not sure on minimum age but you could see if that's an option. Concerns about diet ask for dietician referral. If you suspect hearing issues ask for audiology referral. You can also request a paediatrician referral.I found I had to be direct and specific and well researched when advocating for my son who has asd. If you are thinking asd unless there's obvious gdd alongside it would probably be a bit early to start the process intervention tends to come in more at preschool/school age. This was our time line -
9m - became concerned about asd due to lack of babbling/expression /emotion.
18m - spoke to hv who visited and suggested salt (he had no language)
21m - salt and hv did a joint paediatrician referral
25m - saw paediatrician, put on pathway
2yr - had hearing and sight tested plus full blood work and genetic testing
3.3yrs - autism assessment

Ds had support put in place at nursery
And later in school,he now has a full time 1-1 in mainstream. Other than that we had a 2 day autism awareness course shortly after diagnosis, over past three years he's seen ot for 6m motor skills , had salt for 3 yrs. seen physio twice for coordination and receives support from Sen team in la. He has a ehcp.

There was absolutely no evidence to back that claim of autism and gut health.

This sounds hard. Having gone through similar worries with DS, (now 4.5), I would ask to see the GP because you are concerned about your DD’s development. Take with you a filled out ASQ ‘ages and stages’ quiz for her age (they come up if you Google). From my experience (this may not be the same in every trust) the things you are likely to get help with at such a young age are on the hearing and weaning front. I would ask for an audiology referral as you are concerned she may be unable to hear, and for a SALT referral to check her swallow and for help with weaning. When you see the SALT you can also informally ask for their advice on the lack of babbling, but IME it’s practically impossible to get a speech and language referral for lack of talking before 2 (although signing up for Chattertime etc is a good shout if it’s in your area).

I agree with the pp that lots can change in a couple of months and you may find she catches up. But I think it’s good to keep on top of things, especially as referrals take so long. Once you have got her one sort of referral that might lead to others if they think it’s warranted.

My husbands friends wife is a health visitor and I wouldn't let her look after a goldfish.

My own health visitor was hopeless when my children were that age too

See the GP

Op, this was some time ago. Do you mind me asking how your little one is today?

cant be referred to SALT until age 2 where we are…..can’t refer to community parts til 2 years…..children develop so differently so could easily catch up by 2 years. There’s no children’s centres where we live..they aren’t everywhere in the country….maybe just taking a wait and watch approach at moment

Hiya,

no worries at all.

well she started talking a little after her second birthday which as you can imagine was a huge relief. She said dada, then mama. Since then she’s picked up lots of words. She can count up to 20, knows her 10 times table, and generally knows and can label most animals and objects.

this was obviously amazing progress and it’s very clear that she is very intelligent. However, her speech is still struggling. Most of the words she says are difficult for us to understand due to her mispronunciation and her inability to say a lot of letters. For instance, the word “mummy” is used for her dummy, Barney (the purple dinosaur lol), bunny and a couple other things. ‘Music’ she pronounces “deedow” despite our modelling for her. Though it is adorable to hear her own take on words and how to say them it’s very difficult still to communicate with her and understand what she’s trying to say! Obviously some words are clear but there are a majority that aren’t.

additionally, we’re still not really putting together words to make sentences. There are a couple of phrases such as “bye bye” or “see you soon” that she can say, but I have to note that, that is more of a memorised phrase rather than her putting two words together to communicate. For instance she’ll come over and ask for food by repeating “food, food, food”. Rather than saying “mama food” or “I want food” as we’ve tried teaching her.

she’s obviously so incredibly intelligent but we just are struggling to really bridge the gap in her communication skills. She’s very reliant on adult support for communication. We are unable to even start potty training until this communication improves also. She doesn’t understand me when I say “we’re leaving the park in 5 minutes” for instance, or if she’s asking for something and I say soon or in a minute she has no idea what that means. She has a cousin who’s 8 months younger than her and things like this have been easily communicated to her since she was 1.

she has been for her first assessment for autism and was accepted by the panel and will proceed to have an in nursery assessment in the next 10-12 months. The assessor we saw originally said she’d see no reason why she wouldn’t be diagnosed as autistic as it’s very apparent. So that’s a positive.

I still worry about her as although she’s getting there, I don’t see her being ready for school in just over a year! We had our first speech and language therapy appointment and will have our next one sometime in the summer- though I have to note even though she was a lovely woman, she very heavily dismissed our concerns with her speech despite them being so (in my opinion) severe. It’s been nearly 8 months since she started talking and although she does absolutely keep picking up more words, her pronunciation and her ability to start putting more than one word together at a time has improved very very little. It is obvious there is something else going on there.

but I will keep advocating for her, as I always have! Any other questions please feel free to reach out!

Thank you so much for updating! Mine is only nearly 10 months old so we will see how it goes. He babbles fine, I just feel the social aspect is missing.

Your daughter has done so well. I was actually very similar myself, I was in speech therapy and also had a speech impediment where I couldn’t pronounce certain words. Speech therapy really helped. I’m now in a senior job and despite struggling with social situations as a child, that got better and better throughout my life and doesn’t affect me now.

Forgot to add, I stayed one more year in Kindergarten and entered school a year later than kids my age. That also didn’t impact me negatively. It was just a very slightly different timeline to other kids.

@lulubeanie

Hello, I'm having the same issues with weaning, when would you say that improved for you?

TIA