What help and how do we access it

[TwittleBee]

I'm seeking help for how to allow our DS to flourish at home (and I life generally). We are awaiting ASD and ADHD referrals (I have both and am 99% sure he does too).

I barely managed through life, attempted various suicide attempts and its only recently that I am embracing and loving who I am.

I don't want DS to go through his life (he is only 4 at the moment) with the same struggles. But we have no idea how to help him.

DRs and school both refusing to offer any guidance or support. HV has managed to give us some limited support with the referrals.

For example, how can I help him with his meltdowns, his pain with overwhelm, his extreme empathy and how can I protect our family from his violence?

I have been noticing what triggers him and avoid those as much as possible and keep an eye on when I can see he is struggling etc.

But is there anything more I can do to help him?

I just feel useless.

Some practical things:

Have you looked at ABC charts to try to spot further triggers?

In some areas you can self refer to OT and SALT, check whether you can. Both will help. Not all areas commission sensory OT services but if yours do it will help.

The school must make their best endeavours to meet DS’s SEN. Are they not providing any support? Nurture group, social skills group, ELSA, sensory circuits, quiet room/time out when DS is overwhelmed (or preferably before he becomes overwhelmed)? Not even basic support such as visual timetable, now and next board etc.

Have you applied for an EHCNA? This can include assessments, including a sensory OT assessment even if your CCG doesn’t normally offer it. Then an EHCP can provide provision.

Do you get DLA?

Ask for social care assessments - a carer’s assessment for you, an assessment via the disabled children’s team for DS, and depending on your level of needs you may want an adult social care assessment yourself.

Scope offer mentoring for parents whose DC are undergoing assessment or have recently been diagnosed.

There is lots you can learn , together with your son, about what helps him. Take heart!

What are his special interests? These are, IME, healing and powerful to tap into. Give your child lots and lots of time immersed in his special interests. Join him in them. Use them to motivate him.

What helps him to decompress? Give him lots of these activities, for good chunks severs times a day. My DS needs time alone narrating imaginary games aloud. My DD needs to be swung, hard, for 20+ mins while she hums and zones out.

What is his sensory profile? Understanding this is another key that unlocks things. What does he crave? - give these opportunities 2/3 times daily (my DD is play dough and water play, my DS is weighted blanket). What does he avoid? - reduce or remove these input where possible (in our house, certain noises are too triggering eg vacuum or blender, certain smells eg curry). Where you can't remove a sensory trigger, create a set routine to help your DS manage the anxiety it triggers eg "I'm going to hold the shower on your foot for a count of 3 and then take it away" then gradually work up to leg, body etc - both our kids learned to accept a shower using this method, albeit they still need support.

Once he has a diagnosis, start talking factually and frequently about autism and being autistic, normalise it. Explain, explain, explain things to him especially social interactions, make it a normal thing that in uour home people unpick and talk through social interactions to understand what people mean etc.

Find some other families near you with autistic children and hang out when you can.

Sorry, just re read your OP and realise I assumed your DS has good understanding and verbal communication, hence all my examples which rely on language eg explaining social interactions. These are things which help my kids a lot, but don't help our friends' son who has a different autistic profile and doesn't use much language. Sorry for my assumptions

You may find these sites useful OP.

Here's a good overview of sensory issues. It will help you to identify what triggers a lot of his meltdowns and what calms him. Different kids have different sensory needs, my DD loves deep pressure so long hugs and silence until she's okay to be alone in a quiet atmosphere with soft lighting and cuddly toys and blankets to decompress. Your sons needs for calming may be completely different.
www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?

This is the best OT resource I've seen so far. When you understand his needs a little more, this will help with interventions.
www.theottoolbox.com/

This is a great resource for free printouts like now next and then instructions to help with transitions, picture charts for tasks like morning and other routines and a whole lot more.
www.twinkl.co.uk/