I just don’t know what to do anymore

Hi 

I’m new here so please bare with! 

im hoping for advice or just someone to talk to. 
my daughter is 6 nearly 7, and has been suspected of having anxiety/adhd/asd since she turned 4. 
She has been assessed at school for ADHD by a nurse, who dismissed this and said that she suspects ASD. 
We then filled out a lot of evidence paperwork etc to be referred for ASD, to which we had a response of “we need two terms of more evidence before we take this forward” with lock down, and schools not now opening until September, obviously this has not happened. 
My beautiful girl is now really struggling. She has become violent, angry etc more and more every day. 
Her outbursts happen every day, at least once sometimes two or three. She screams, growls, shouts. Tells me she is going to kill me multiple times, throws things at me, destroys rooms. We just can’t calm her down for love nor money. 
Its killing me. I so desperately want to help her but she pushes me away and hits me. She’s so angry that she just can’t hear me. 
The neighbours complain constantly, they have now put their house up for sale because of this. 

I’m lost. Completely lost. When she says she wants to kill me I can’t help but think just get it over with then. I know how incredibly selfish that is but I feel like the worst mom ever. I feel like I’m not helping her and I’m doing the wrong things. 

We have spoken to an education psychologist and also CAMHS who have given us some resources but she’s just not interested. 

how do I know if it’s her ASD or is it just behavioural? 

Sorry for how lengthy this is, but it feels nice just writing it down. No one understands xx

  • Sorry to hear what you are going through. 

    What you are describing sounds like a typical meltdown that my 9 year old daughter has, she has Autism and was diagnosed age 7 after being referred to CAMHS agd 4. 

    First off, you are not a bad Mom!!

    Meltdowns are both physically and emotionally draining on both our child and us. As I dont know full ins and outs of your daughter I'll describe mine.  The meltdown can come out of nowhere, she can be fine one second and within a minute shes in full meltdown. When she is like this there is no rationalizing with her, she becomes very angry, very high pitched, destructive, her language turns nasty, she lashes out, she says hurtful things and she self harms. She says things like she wants to die or she wishes I was dead. After time you learn when a meltdown has just started and can de escalate the situation according to what works for your child, with mine I hold her tight and tickle her arms and back. Sometimes she will resist bug then she will just melt into my arms and calm down. Sometimes even this wont work if she has gone into full meltdown, she had a 2 hour meltdown the other night and I couldn't calm her! Meltdowns can occur when the person experiences sensory overload or even just being overtired. My daughter has alot of sensory, social and emotional issues. My daughter goes to mainstream school but she doesn't enjoy it, she masks through the day how she is feeling, so every noise that hurts her ears or social interaction she has found hard, just builds up and up. When she gets home it's like an explosion, her senses have been overloaded all day and when she gets home to her safe place she just let's go. I had trouble for a while making school understand that just because she looks like she is coping at school doesn't mean she is, she masks her feelings in school and then I get full force at home time. 

    I found it good when she was younger to write things down that I noticed like she hated any loud noise, funny with smells, having to have things in a particular way, not interacting with other children etc. This helped greatly when we were referred to paediatrics to get CAMHS referral. 

    Even now she wont wear skirts, it has to be jeans, she has a special plate because she likes her food separated and she hates change. Up until a month ago she had the same hairstyle everyday for every occasion, now she has a pony tail instead of a plait but that was a huge thing and we were so proud of her for making a change.

    My daughter has found lockdown very tough because it has taken away her normal routine although she doesn't like being at school. With routine she knows what's happening, without it everything is unpredictable.

    Have you found her behaviour has worsened since shes been at home everyday? 

    It may be worth going on Amazon or Ebay to get some sensory toys for her, you can get some for a few pounds each and they can be really helpful. It was suggested to me to make a calming box so if she feels stressed or you can tell shes in the start of a meltdown, say to her "I can see you are feeling unhappy at the moment, let's go to a quiet place and get your calming box". Sometimes it will work, sometimes if wont. I also made a den in my daughters room with a sensory tent and her bean bag and that's her chill out corner, she loves it. 

    Every person with Autism is different and what will work for one person wont work for another. The whole process is just trying things until something works and even on really bad days nothing works at all.

    Just remember you arent failing, you are a good Mom. Some days are so hard you feel like falling into a heap.... that's ok. Remember it's hard to help someone who cant tell you what's wrong and we all have days we feel like failures but we aren't. 

    I hope you get some answers soon, keep calling them and express how your daughter is not coping. Dont take any excuses either, like I said school thought my daughter was ok and coping when she doesn't cope shes masks. Explain that you want something done because she may present different at school anyway. Your child can appear differently at school than at home like mine. You know your child better than anyone and I'm sorry to say this will be a battle to get heard and understood, but you got this because us Mommas fight for our babies. 

  • I am so sorry you are going through this difficult period. It is very similar to my experience with my two autistic children. I completely understand.

    Unfortunately the diagnosis and assessments are still long term battles for parents.

    The behaviour at home during this time is also evidence. Certainly for CAMHS and the Paediatrician. What you can do?

    Keep a diary and write down all the behaviours and meltdowns. Share the diary with the Senco, the CAMHS and all the doctors and professionals.

    Email the Senco regularly , like weekly with updates about your daughter at home, so they won't be able to say they are unaware.

    Hang on in there and talk ti us.