To think DD might need to be assessed

[ngonizashe]

Hi all

My DD is 4.5 years old and the youngest of 3 sisters aged 11 and 14. She was premature and a very small baby.

DH and I always knew she was a rather challenging youngster. Very particular about things, would have meltdowns over trivial things. Our lives began revolving around her quite majorly and things seem to be getting more intense. She’s never been able to attend nursery because her separation anxiety has been so severe she was distressed for hours, eventually ending up only able to communicate by dribbling as she was so traumatised by the end of her attempted sessions. We tried again 6 months later and the same happened. The nursery agreed she wasn’t able to cope well. Now she’s due to start reception in September and I feel an utter fool for it only having recently, in the past week, dawned on me that she may actually have a developmental delay or issue.

My husband doesn’t agree, he knows there are behavioural issues but thinks it’s not that serious (he’s not the father to the older 2 so doesn’t have the benefit of that comparison in some of the same way I feel)
In terms of the issues DD displays, she just seems to find daily life a struggle.
Getting dressed, putting shoes on, brushing teeth can often cause distress and tears, sometimes this will last for up to 30 mins. Other days she’s fine. Mealtimes, going out, coming in, someone trying to help or interfere with something she’s doing, bath time, a word being missed out in a story she’s familiar with - these are all things that can set her off. Sometimes if she’s very upset she will just dribble and scream and it’s almost like a panic attack. She definitely struggles with some sensory stuff. She doesn’t seem to be coming on as much as I’d hoped with drawing, she’s got no interest in learning to read and won’t really entertain any such activities but she loves hearing stories. Music she can find overwhelming. She loves other children and is really keen to make friends but often finds them overwhelming in practice or too loud, or she get frustrated because she can’t control their actions. Her language is very good, when she chooses to use it.
We have seen our gp and been told 22 week wait for assessment which in all likeliness takes us into new year. If this was your DD, would you consider a private assessment. DH thinks it’s unnecessary but I’m convinced she will need support for the school transition. She’s never been (able to be) left with anyone other than us.
Any thoughts really appreciated.

No, it sounds like there are wider issues at play.

When you say she has never been able to be left with anyone other than you, do you mean at nursery, or at all, so not with grandparents etc?

Should add as well she also refuses food a lot of the time and will cover her nose and mouth in the presence of food. At worst we’ve had to syringe fed her meal replacement shakes. She also withholds her bowel movements (she has for 3 years) and is on long term laxative.

@PotteringAlong not with anyone.

This must be very hard. If you can afford it, go private. The worst that happens is it sets your mind at rest and all is well. And if she does need extra support then it's better to plan for that ahead of school transition if you can.
Good luck x

I think it would be kindest to your daughter to get a private assessment. School transition is likely going to be tricky, anything that might make it easier would be a good thing.

You're not doing the assessment to 'label' her, but to do what you can to make life easier for her.

22 weeks or 22 months?

Go private 26 months wait here. (Prepandemic)

I agree with pursuing this. It's worth checking out about private assessments as they may not be accepted later down the road. My son 2.5 was diagnosed with autism this week and for us the whole process was very quick - speak to your health visitor team, GP and ask the nursery if they can provide evidence too. One half an hour consultation with a pediatrician and a load of evidence (we had a SALT assessment, nursery report and HV development review forms) was all it took for our diagnosis.

Also just to add you don't necessarily need a diagnosis. Speak to your local area senco - EHCPs and even things like DLA are awarded based on need, rather than a specific diagnosis.

yes I would pursue assessment for sure, although I think the NHS should do it. Ask for a referral to paediatrics

Get referred and then ring the paediatric team admin and ask to be put on a cancellation list for appointments.

If the school is still open, ring and speak to the Senco and/or the reception teacher about your concerns. I think you’ll feel better once you’ve started to take some steps.

You could consider a sensory assessment for her. She doesn’t need a diagnosis of anything for this. It might help you to manage her environment and let the teacher know how to help her. We had one done privately for our youngest after his autism diagnosis, but I wish we’d done it sooner as it was so helpful. It was expensive, but a local charity paid half of the cost for us.

I hear that your husband isn’t ready to face this, but fortunately for her, you are. Good luck

DS was referred by the GP in April (after forgetting to do it in January, but that's another story!) and his assessment is next February.

He sounds very similar to your DD. He masks at school, however, so I've had to push this through with some force (thankfully, despite being forgetful, my GP is really good).

Are school aware of the potential issues? If you haven’t been able to leave her with anyone at all she is not going to be able to go into reception without an issue. If they haven’t broken up yet, I would ring for a chat next week

Absolutely get a private assessment if you can. The more advice you can get before she starts school, the better.

I would take the nhs referal especially if it’s only 22 weeks.

In the meantime I would get in touch with the senco at the new school and discuss your concerns with them and come up with a plan to help the transition as best as you can

I think if she's due to start school in September but has never been with anyone but you you need to get her seen ASAP. I do think your dh is minimising.

Sounds concerning, hope you can get some help.

I definitely think you'd be wise to have an assessment ASAP & communicate that with the school so that they're at least aware of the situation & can prepare strategies. It does sound as though she will need some additional support - going from not being left at all with anyone to 5 days per week at school, in a large group, with a strict routine & expectations, will be a huge transition for her. I say this all this as an experienced Primary School Teaching Partner.

Have you had any conversation with the school at all about her? It's standard practise for Reception Teachers to have discussions with all the 'feeder' nurseries/ pre-schools & where a child hasn't attended one, they usually at least call the parents for a chat.

You could ask for her to have some 'stay & play' familiarisation/settling-in type sessions with them &/or a phased start, gradually building up to full days.

Assessment aside, in the interim, you'll need to work with them to come up with an approach which will work for your daughter - even simple things like the lunchtime supervisors being aware that she's food averse will minimise any unecessary triggers etc.

And if you do find she has additional needs, be prepared to fight HARD to get her everything she needs within the educational system - don't be fobbed off! Resources & funds are limited & it may be a battle at times, but you know your child best, so be her advocate & forge a good relationship with the school - that will help no end!

She doesnt need a formal diagnosis to be on the SEN register at school, or for you to apply for DLA for her tbh. If you are suspecting autism then get in touch with local support groups or autistic charities for signposting or help with accessing support or filling out forms

I would suggest contacting the school ASAP letting them know your DD has been referred for assessment and ask them whether they will apply for transitional funding. This would enable the school to give your DD some one to one support while they gather information to get her an EHCP. The diagnosis is not the most important thing here, you need to make sure the school are prepared, and that doesn't require a diagnosis. If the wait is really 22 weeks, I would say that is quite a short time. It may be helpful for your DD to start school before the assessment so that the Dr can take information from both home and school when doing the assessment. Otherwise, since she hasn't been to nursery, they only have information from you. They like to see info of what the child is like in different environments.

How premature was your dc?

You don't need a diangoises for some transitional funding in reception. It's only around 10 hours a week and just for that year. Can you speak to school about applying for that, whilst you look at a diagnoses. I cannot asses over the internet but it does sound like your DD has some autistic traits. More knowledge on how to manage the transitions and meltdowns would massively improve yours and dds day to day activities. Don't be hard on yourself 4.5 years is still young and still so much time to help you dd

Thank you all. Yes it’s 22 weeks, GP said she had put it through as urgent, I still thought that was a long time, but hearing others long waits actually I’m considering us lucky now! She was 4 weeks premature @Roodicus21

Can you please google primitive reflexes or infant reflexes not going dormant and see if this fits her. I am suggesting it because its not uncommon for prem babies to have this issue. There is plenty about it on mumsnet and it results in ASD traits but these can be resolved.
This is what happened to my prem son. Our insurance paid for an ASD assessment at 4.5 years old and he was diagnosed borderline ASD. At 9/10 when he was getting bullied at school I sent him to an ASD therapist who a) suggested I get his infant reflexes checked out b) suggested another ASD assessment referral and c) wrote a letter to his school saying she thought he had ASD and on the basis of this letter alone the school made changes to help him transition into high school.
But shortly after this I started the brushing excercises for reflexes not going dormant and within 3 months it was like my son was a different child (in a good way). When his ASD assessment came up at 12 they said it was clear he had had ASD traits but he no longer had them. He literally went from a child with limited eye contact, trouble with friendships, sensory issues with a whole range of things from sock seams to food, no pointing, no imaginery play etc etc - to having normal eye contact, making friends, pointing etc etc. I had to contact his school to tell him he is no longer considered to have ASD.
A lot of the things you mention with food / teeth brushing can be sensory issues.
One thing I would say is - if you are thinking about getting an assessment I would find an ASD therapist first as you may find just a letter from them is enough to help her transition to school. If not. she or he might help with private assessment recommendations and are likely to do them themselves.
The thing is - is not very common for children to be diagnosed at your daughter's age so lots of unassessed children will be entering school and teachers will be used to tricky behaviour. Speak to her nursery and school - the nursery might back you up with some settling in suggestions so you might not need to pay for an expensive assessment which at her age might end up not being definitave anyway as at her age its still hard to tell.

It's good you're acknowledging she may have some developmental issues. The earlier you get support, the more impact it can have.

From your list I'd be most worried about the transition to leaving her in reception. Definitely speak to school and prewarn them. They hmay have strategies already to help her stay and settle. If she really has never been left with anyone else, could you practise very short spells over the summer with grandparents or other friends/relatives? Build from 5-10 minutes.