I’m broken

[Bluecarcarmom]

Hi all,
I hope someone can offer some help, support or just solidarity.
My nearly 3 year old is showing clear signs of ASD but more recently is becoming violent. Last night he spent most of the night punching, hitting and kicking me. He doesn’t sleep and is up 3+ times a night.
I can’t leave him for a second or he screams for me and it makes it difficult to care for his two sisters.

My health visitor has made a referral to paediatrics, but what’s next? How can I speed up this process or get some support? We have no family support and are just told to tell him no.

I can’t carry on living like this, it’s not a life for me, my son or my daughters. I need to see some light at the end of the tunnel because each day seems to be harder than the last.

Thank you for reading xx

I'm so sorry you are having such a difficult time. 3-4 years old was a really hard time for us with ds, He was non verbal and was quite violent too although it was more self harming at that age (head banging). Thankfully things are a lot better for us now he's 8.

There are things that you can do. First is to find out what the trigger causes are for behaviour. There's a thing called an ABC chart (you can Google it) where you basically write down what happened before during and after an incident to try and establish a pattern of behaviour. One you find the triggers try and remove them as much as you can. For my son, his main triggers were (and sometimes still are) any kind of transition and not being able I communicate what he wanted.

There is a Facebook group called Newbold Hope - family support group. It's full of patents who are going through similar, it's private so you have to apply to be in it. Yvonne Newbold also has a distressed behaviour group, which has videos and information about reducing violent meltdowns.

The other thing you can do for real life support is to look on your councils 'local offer'. This should list all the things they have in your area to support parents/children with special needs.

It might also be worth applying for disability living allowance. It's a horrible form to fill out but it does not require a diagnosis, it's needs based, and having the extra financial support is amazing. If you go to a website called Cerebra there is a great guid on how to fill it out.

I second applying for DLA using the Cerebra guide if you don’t already receive it.

Does DS attend nursery? How is he there? If DS needs additional support you can apply for an EHCP. And, once DS is 3 the nursery can apply for early years inclusion funding (some LAs offer funding for eligible 2 year olds, but not all as it’s non-statutory). Neither require a diagnosis as support is based on needs rather than diagnosis.

Is Portage involved?

Check to see whether you can self refer to SALT and OT in your area. Once you are seen be paediatrics ask for melatonin to help with DS’s sleep. You could ask for a referral to a sleep clinic too, but this may not be any quicker than waiting for the paediatric referral.

You can ask for social care assessments, an assessment from the disabled children’s team for DS and a carers assessment for you, which may result in you receiving additional support. You don’t need a diagnosis for either.

Have you been in contact with Home Start?

Scope have a mentoring service for parents whose DC are going through the diagnosis process or have recently been diagnosed.

Unfortunately their isn't anything we can do to make things faster since I last saw the paediatrician all we have had us more questionnaires . My son has been excluded 3 times and can't cope in school or home had to have 1 to 1 support school raised red flags and seen many other people and we still haven't had ant diagnosis my son will hurt himself and others he will break and destroy items he punches and kicks the walls doors anything he will scratch himself pinch bite he doesn't sleep well constant running and jumping around . Maybe you ask the school for a referral and maybe see the gp. Hope u get things sorted for your family x

Conspiracyornotr While you may not be able to speed up a diagnosis there are ways to get more support and help while waiting for a diagnosis - EHCP, DLA, social care assessments, SALT, OT… Does DS take melatonin?

My son has not yet had a diagnosis we have seen the paediatrician what's a social care assessment? What does Salt and Ot do . I would like him to be on some sort of meds as he doesn't cope well and doesn't sleep either he just dropped off now 1.40am I'm shattered . X

SALT and OT are speech and language therapy and occupational therapy, respectively. Social care assessments are assessments by social care’s disabled children’s team for DS and a carer’s assessment for you to see whether you can be given any additional help. Have you asked the pead for melatonin or a referral to a sleep clinic?

@Imitatingdory I have appointment with the paediatrician Friday I will mention to her I just hope and pray that we don't get sent away again last time my boy couldn't cope and destroyed the place and attacked me and she said we couldn't carry on and i have to wait another 5 months and my son is struggling more and school its not fair 😢

Oh my Love, big hugs to you. It is hard. 3-year olds are trying at the best of times. But ASD adds another element into the mix. My son was really hard work at that age. This sort of behaviour is often triggered by unmet sensory needs (eg inability to cope with particular sounds/colours/smells etc) or particular triggers - eg transitions between activities. I would advise trying to keep a log of incidents and see if you can identify any common issues/ triggers that are causing problems.

Absolutely claim DLA and use the cash to pay for specialist help - we paid for a full occupational therapy assessment at age 5 so we could clearly see which senses were impacted by ASD and to what extent. Then we worked with an OT to identify strategies we could put in place to help our son. It's paid dividends. We get about £330 a month for our son and every penny has gone on either sensory equipment or private speech and occupational therapy. We would never have been able to stretch to that ourselves and NHS in our area offers virtually nothing....

[quote Conspiracyornotr]@Imitatingdory I have appointment with the paediatrician Friday I will mention to her I just hope and pray that we don't get sent away again last time my boy couldn't cope and destroyed the place and attacked me and she said we couldn't carry on and i have to wait another 5 months and my son is struggling more and school its not fair 😢[/quote]
Do you have an EHCP? What does school SENCO say?