How to cope with my sons meltdowns

[Twinmama4]

My sons only 2 and we was told last week he is officially on the pathway to a diagnosis (i dont think that will be for a while but to enable to access services)
Hes 2 years old with a twin both are non verbal but he is so frustrated his meltdowns feel constant. I hardly ever know its coming or see a cause he screams bangs his head hes difficult to bring out of it. He also makes a beeline for his twin to smack her. He repeatedly bangs his head on the floor. I dont know how to help or how to cope. I worry he'll never speak and remain so frustrated. I knew the aasesment would come eventually but sort of nievely always hoped he would start speaking and improve all on his own before it did. I feel bad because i shouldnt feel sad about it but i do. 😔

Has anyone had similar experience and had lots of improvement (even good speech) develop x

Do you know if he has been referred to salt? If a private salt is an option I absolute would look into that.

At that age my ds was similar, he would head bang, hit, kick purely because he was so frustrated, still occasionally does but luckily we have things in place to deal with it now. Alternate communication methods can help to reduce this as well as helping support language development. Things like object to reference, pecs, makaton, high tech aac, podd etc. Especially object to reference, makaton or pecs at this age (the main NHS salt defaults).

It's totally normal to feel sad about it, I certainly did. He is still super tiny and has loads of time to develop speech. Even if he doesn't it may feel like the end of the world but it really doesn't have to be. There is so much tech these days which can enable communication. Speech is just one of many many communication methods.

@greenjewel ah thank you so much for your response hearing from someone thats been/going through similar situations helps. We are under salt we got the referal early they are 2.4months and have been under salt since day after their 2nd birthday. Does you DC communicate with speech now? What age did that start if he did? We do try makaton and objects to reference ive never tried pecs. But his attention is the main problem getting his attention. He loves rhymes and singing. But he is so frustrated at the min i usually take them out on my days off work they love being outdoors and free but its gettinf harder and harder with his meltdowns and also having his twin sister getting to were i dread having to Go somewhere and i hate that because when hes happy hes so happy and enjoys being out but so unpredictable unfortuantely even in 2022 people still find the need to stop, stare, TUT 😞

He has some speech now, first words at 9 and a half years old. He uses the speech he has and a high tech aac device. He's very much able to communicate with us just in a slightly different way. An awful lot has been trial and error. We tried a number of different communication aids before we found one that worked for him. Salt really should be supporting you through this but unfortunately NHS salt is hugely under funded. Private salt really is like a different world.

How is his understanding? That was also a huge issue for us, it wasn't just him not getting what he wanted it was him just not understanding a single word I said to him. Supporting his understanding via a schedule, now/next board, activity board really helped to reduce some of his frustration and anxiety.

I realised as ds has gotten older that the staring and tutting has for the most part stopped. I think it's because it more obvious now he is older that he does have a disability and for the most part people are very kind and patient with him. When he was a toddler we certainly had more issues, ultimately some people just aren't worth a second thought. They have no idea what you are dealing with. Once you find a way to reduce his communication related frustration and he is able to make choices things will begin to improve.

Hi my dc was non verbal and having 20-30 meltdowns daily at the same age. Agree on salt she was fab with him and supporting me to use my words better! We found a set routine helped so he got a sense of each day we also had a daily planner using real life photos which we would go through twice a day. We broke down the smaller routines - bed time, dressing etc and would have photos of the routine displayed in the appropriate room. Lots of pictures of new places before we visit, and sometimes a practice run before visiting places. We started to get a sense of what was and wasn't manageable and took the unmanageable off the table or if it had to happen for example visit to dgp he would have a iPad while we were there. We have never pushed him to do things because they are the norm (eg hugs /kisses etc) Food was never made an issue, we made him things he liked would sometimes put something on the plate or table he didn't like to try but no pressure t do so. We tried get extra veg etc in through smoothies/sauces rather than negotiation. We made sure he had consistency across people who looked after him and let a lot of the things you would normally pull a two year old up for go. Lots of time warnings for change and we used a sand timer. Stims and fixations were accepted and embraced as these are very soothing for autistic people. Unless it hurt like head banging for which we would put lots of cushions down and tried to encourage an alternative stim. What all of this did was reduce his anxiety/overwhelm which meant that he firstly trusted us and secondly found life more manageable. For discipline we did a removal from situation (timeout) for two minutes but stayed with him and soothed him, this would sometimes work as a reset and he would be calm after. We never discipline meltdowns or situations beyond ds capability. We never bring up past issues, once somethings dealt with its back to normal. When dealing with issues we always first look at what's wrong in the environment, what can we change to make things easier. Timeout was always a last resort for significant behaviour issues -hitting, throwing toys at other children etc.

Fir me I had counselling, I did a mindfulness course. Took up meditation and yoga. I gave up work first a while and then went back part time. Dh did a stress management course and took up exercise. We both started walking. This helped manage negative thoughts and bring stress levels down.

Ds is 7 and the most awesome human being ever. He has all the words now,! this was gradual from around the age of 4 with a massive leap around 6 years old. But his use of language is different to an nt persons , he still does a lot of echolia and can not take information in, in a group capacity. He fully toilet trained at 6 too. He's in mainstream school with a full time 1:1 and thriving, he has a best friend, he excels at maths and phonics, he loves space and planets and Mario and sonic. He has come along way with food and has an ok diet. At 2 I could not have imagined most of this.

My advice would be take it a day at a time, don't try to second guess the future and don't carry the past on your back. Read lots of books, there's some great autism support groups on Facebook. Try to take time for your self where you can.

Also yes the staring is hard try to ignore it. It does ease off the older they get.

Thank you all for your replies.. trying to take it all in. Weve had a bad few days honestly feel like its making me ill literally cant take him anywere anymore not even to family he just starts screaming and i have no idea why or how to help. We might try private salt again but dont feel she did much different to the nhs tbh. I think the fact we have twins makes it harder to have that 1:1 time with him and i feel he needs more of that and his twins gets so upset when he screams and then a 6 year old that feels completely left out its a whirlwind for us all and just wish i could make him happy and fix everything for him