I'm so overwhelmed

[Tealknittedjumpers]

Name changed for this as it's so sensitive to me.

Did has selective mutism. I'm a single mum with an absent father in another country that I came back home from with her as a baby. She's nearly four.

As part of the support for selective mutism, she was referred for an assessment with nursery nurse from health visiting team. Subsequent to visit and questionnaire. We were then referred to paediatrician who suspects ASD and we have been referred to ASD assessment. I've since filled in the questionnaire for it and was amazed at how many of the specific questions fitted by dad's behaivour. Also was given a questionnaire to pass onto her nursery. She's not been back at her nursery since Jan, as they weren't supporting her very well and she was coming home in a complete state, and arguing with me when I explained her needs. Health visitor advised me to just post the questionnaire through their door, as they're quite difficult to deal with in person.

Anyway, I'm overwhelmed because I was thinking selective mutism and her behaviours were just lockdown affectş and she would grow out of them. I had hoped to start some kind of life for myself with work, in September when she starts school. I don't feel equipped to deal with ASD alone, for the rest of her childhood/teens/adulthood.
I've asked for the DLA forms to be sent out to me, but I'm still overwhelmed by the thought of it. On the one hand it would make such a difference because I could take her places every day that I can't afford and her meltdowns may ease. When things get damaged and destroyed it would be less stressful because i would have the extra to cover it. On the other hand, what if I am refused the application and then I'm stuck exhausted with an SEN child and unable to find work. What if she can't settle at school? I've pushed health visitor and speech therapist to explain to me step by step what I need to do for school support and how to support my child, otherwise no one has given me any support or information. Paediatrician couldn't even tell me properly what ASD is. Just said 'social and emotional condition'. Have had to do tonnes of research the past two weeks to get my head round it. Feel so sad that the violence may not be grown out of. Trying to look at the bright side- things like queue jumping if I take her to Legoland for her birthday. Now someone has said the ASD word, it all makes sense. She totally has it. İt's getting more obvious in the park when she tries to make friends and ends up screaming at me that they're not following her lead. All those things as a baby which made no sense and had me in tears. Never being able to self settle, even up until now. I'm supposed to be signing on every week but I'm asking for a period of pause whilst I'm without childcare for her and going through all of the paperwork and chasing appointments. İt's the waiting which feels the worst. Thanks for reading this far. Needed to vent and need some support.

Use the Cerebra guide to help with the DLA forms. If it is refused ask for a mandatory reconsideration and then appeal. You could also look at grants such as Family Fund.

Have you applied for an EHCNA? If not you should. IPSEA and SOSSEN (charities who support parents with SEN matters) have lots of information on their websites, including model letters, and both have advice lines.

Once you know what school DD will be attending speak to the SENCO.

Scope offer mentoring to parents of DC undergoing assessment.

For the challenging behaviour are you keeping a diary to try to spot triggers so you can deescalate situations? Also look at Yvonne Newbold’s resources and Ross Greene’s book The Explosive Child.

Most of the triggers are when she doesn't get her own way or can't do something she wants. Like today she was hula hooping and couldn't get the hula hoop to stay up for more than five seconds and as I tried to calmly explain practising to her, she picked up the hula hoop and launched it at my face across the room. I can't really stop her exploding other than repetitively taking the item away, or giving timeouts.

All those things are really helpful thank you, although more stuff to think about. What is an EHCNA?

An EHCNA is the needs assessment you first request before the LA decide whether to issue an EHCP or not. An EHCP is an Education, Health and Care Plan, a legal document setting out DD’s needs and the support she requires to meet those needs.

Ok, so Explosive Child approach for the hula hoop thing would be to choose a moment of calm and then say something like 'That hula hoop thing seemed tough for you. What was the problem?' (Importantly you're NOT focusing on the bad behaviour, but on the situation, so none of this is about implying thar violence is ok). You then find a way for her to share why it was hard for her. Maybe she'll tell you right away. More likely it'll be teased out slowly - this is the hardest part. Then you recap what she's said and then you share your concerns. Then you work together to find a solution. Again, this is unlikely to all unspool neatly in one conversation.

The solution itself is unlikely to be all that great first time out - the point is that you're helping her develop the skills she needs to deal with frustration.

Rinse and repeat, rinse and repeat.

@SusiePevensie ah okay thank you, so I could kind of bring it up today, to get her used to understanding her emotions, even though it's a later date?

@FloatingBean would I need to add diagnosis first, to apply for that. İt could be six months before an assessment. İf i were to just apply with selective mutism, could I request to change the EHCNA, later on, following ASD diagnosis? I would I have to request the EHCP be changed, rather than the EHCNA. Thanks a lot too, btw.

You don’t need to wait for a diagnosis. Provision in EHCPs is based on needs rather than diagnosis so a diagnosis won’t necessarily change the provision in an EHCP, but EHCPs are reviewed at least annually and can be amended if needed.

@FloatingBean thanks a lot :)