The benefit of hindsight. What would you have done to help your child

[SherbertLemons]

First post on this forum category.

I'm a bit of a mess so please bear with me.

My daughter is 13 months old. We had a call from her nursery today requesting a meeting to discuss some concerns they have with regard to her development.

They have noticed;

• she doesn't always respond to her name (this is true and I've noticed it also);
• she puts EVERYTHING in her mouth (I thought this was normal but she is my first)
• lack of spacial awareness (falling over a lot) - she isn't walking yet (she can pull herself up and walk round a table / stand up unaided for a few second; but not walking without support yet)
• she is apparently fixated with a book at nursery where you press buttons (surprising to me as she hates similar ones we have at home)
• she isn't as interested in settling into a task like the other children. For example today they had the water table out; all the kids really interested and having fun playing but she came over touched the water once then went off and wasn't interested (loves bath time and weekly swimming lessons so it isn't a hatred of water).

I got the gist of what they were trying to say. I asked either they think she is autistic and they said maybe (or another SEN "condition" is that the right word; I'm so sorry if it isn't. Please educate me!)
They are obviously not able to diagnose and she is still so young.

For context there is a lot of autism in my partners family. Nephew is high functioning, half brother is also autistic and struggles socially. My partner is a bit of a nerd and I guess if it is a spectrum he may very well be on it.

So we are going to meet with the nursery to discuss how to support her and make a plan going forward. Is there anything o can do at home?

The only thing I know about autism is early is early intervention is key. But what does that actually mean in reality. What do I need to do/learn/who do I need to get a referral for her to see.

Any advice would be greatly appreciated. I just want to help her if she does need extra help x

13 months is incredibly young and I don’t think you will get any answers yet as to a diagnosis. It’s also so young to know how she is developing, as there is a lot of variation.

So the first thing is to enjoy her and see her as a baby and toddler first, which is difficult when you are worried and seeing anything as a ‘red flag’ - and I do sympathise and get that.

I have an autistic boy and one of the things I wish I’d done more is enjoy is early years, just revel in them as they go past so quickly. And coincidentally that is probably one of the most effective ‘therapies’ for helping your child. Fully immerse yourself in your child’s world as much as you can and follow their lead.

My boy aged 4 was non verbal and that wasn’t non speaking - it was inability to understand language and very few words (none used functionally). I do believe that a lot of what helped him to talk was me being very, very in tune with him and doing a lot of ‘one to one’, in a playful way, using simple ‘one words’ in response to his play, or his actions. And leaving a lot of time for him to respond to me.

Simple songs ‘1, 2, 3… ‘ etc are very good. Always give extra time for your child to respond. Become a ‘very in tune mum’ who is more ‘responsive’ than anything, and don’t dominate.

Be very aware of what stresses your child, and keep them as happy as anything. They cannot learn if stressed. My child couldn’t bear toddler groups, and for a 3 sessions I tried to get him gently used to them. Now I realise - if your child tells you with their screams or response they don’t like something - then don’t do it.

Don’t ‘put’ language there or ‘rush’ development. Give your child safe, stress free spaces where they have the opportunities to develop, to pick up language.

My boy is now speaking and motor skills are a lot better also, he’s a happy thriving child.

@PimmsandCucumbers is wise.

@PimmsandCucumbers I'm so touched you took the time to reply. Thank you for your wise words. That has given me a lot to think about, thank you. I hope your son is continuing to thrive xx

Yes, agree with the above.

Look up intensive interaction, follow her lead as much as you can.

There’s a book called an early start for your child with autism which might be useful in giving you ideas to help her learn different skills but don’t turn all of life into ‘therapy’ for her. Enjoy her and let her play.

Get some sensory toys based on what she likes.

Limit screens and electronic devices as much as you can. It’s a slippery slope!

I was going to recommend the book An Early Start for your Child With Autism too, but @openupmyeagereyes got there first 😀

Ignore the fact that "autism" is in the title - I wish I'd read that book as a first time mum regardless as it's got a ton of great recommendations for building joint attention and communication skills (the things you want DD to be learning now) in any child in a way that (as Open says) doesn't feel like you're turning your whole life into a therapy session. It recommends getting on the floor and really meeting your child where they're at and building on what they're interested in, rather than forcing activities on them that frustrate them and you when things don't go the way you want them to. To me, in hindsight, that just reads like good parenting, but that book helped me to see that.

I'd also recommend the resources at Meaningful Speech (you can find them on instagram). 13 months is too early to be worrying about expressive language skills so please don't add this to your list of worries right now, but should you need it in the future there are loads of tips on how to approach supporting language development that, again, are child-led and low intensity but can have significant impact.

Both the book and the speech resources (the insta stuff is of course free) have a focus on fun, child-led activities that build on the interests and skills of the child so, even if it turns out you aren't on the path to an ASD diagnosis, you'll have done absolutely no harm in following the tips. Both are about slightly tweaking what you might do instinctively anyway, to maximise learning opportunities for your DD without turning your life upside down.

I also second what @PimmsandCucumbers says - don't allow yourself to stop enjoying time with your DD, which is REALLY easily done when you start trying to be both a parent and a therapist (I know I've been guilty of it)! You're absolutely right that early intervention is key, and that requires building and maintaining a strong connection, becoming that "in-tune mum" so that your DD knows you understand her and are always on her team, as the foundation for success with any approaches you try.

Oh bless you.

Your child is super young, way too young to diagnose. I have friends’ kids who didn’t talk until 4 or walk until very late who are neurotypical and totally fine now they are 6/7.

However I think you’re smart to take on board what nursery say without panicking. They see a lot of kids and most likely have an instinct.

My son was diagnosed at 5 as a result of behaviour problems. He’d met all his early milestones around walking and talking etc so evaded early-early diagnosis.

what i wish i’d known…

1. I wish I had known that he wasn’t just naughty. When he didn’t listen i would raise my voice (now i know to make physical contact and touch his arm if he isn’t listening), I would have known to manage transitions with timers and not to try conventional discipline strategies like thinking step which just made his behaviour worse.

2. i would never have sent him to a very academically selective private school. He was miserable, felt stupid and was socially isolated. The school has amazing facilities and lovely staff but honestly he’d have been better in the local comp

3. i would have started getting my partner on board earlier. Many dads struggle with kids diagnosis (huge generalisation here but bear with me) and even the day the diagnosis came for him was a huge shock

4. i wish i’d known people regularly gaslight you by saying child seems totally normal and fine and they are ‘sure’ child will grow out of it. First understand just because people say this, doesn’t mean it’s true. People are trying to be nice in a misguided way. Second, figure out a way of responding to these comments in a way you feel comfortable with. I used to try and educate people (“he can be fine AND autistic!”) but that got exhausting so now i just say yeah he’s super smart.

5. would have understood his play more and joined him in his happy zone of swimming, stimming and climbing trees rather than wasting years trying to get him to go to sports classes and clubs and not understanding why he hated them and refused to participate

6. i’d have got myself a network of other SEN parents to hang with. I have them now and they are the best, seriously.

7. i’d have got educated about education law, EHCPS, funding etc even earlier. This stuff is a minefield for all but a very lucky few and knowledge is power.

8. i’d have applied for DLA sooner. It’s not means tested, not masses of money but it helps given the masses of expense many SEN parents rack up. And if you get DLA that gives you access to things like free carers tickets to events and attractions, passes to skip queues in airports and so on.

good luck x