Published on 12, July, 2020
My story is long but Im seriously desperate and I need advice;
Ill try keep it as short as possible; my oldest son was always happy and laughed constantly at the age of 1 he reacted badly to the MMR needle; and i do mean reacted so badly that he was hospitalised and nearly died having to put adrenaline into his heart. I know the great debate on the MMR needle so I dont want to debate on that but he hasnt been the same since. He never laughs he hardly smiles at 6 years old I think hes suffering with depression. Ive been fighting to be helped for 5 years now and during the journey of meltdowns torture tears ive attempted suicide as a young mum, my youngest son is terrified of his brother its heartbreaking that they dont have the bond normal brothers close in age do. From a young age hes done this twitchy thing with his hand and he used to hear noises way before i did (like sirens etc)
Finally i got to Armistead (the place they test for autism) and they mentioned he '2 stepped' but they didnt tell me what that meant, they also pushed alot under the rug like the fact my son has suffered severe leg and joint pain for years... so if hes out running and being wild (he runs non stop) hes up that night screaming with pain and ive tried everything! His speech was so bad i got him delayed a year at school so hes started primary 1 in august and hes already on the verge of being thrown out as they dont have the right support for him theyve timed he can only play with kids for 6/7 minutes before he lashes out, he doesnt have friends, i have tried to get him to join groups etc but his anxiety is through the roof and he cried the whole time begging for me to take him home, i struggle to get him to school most days but its the normal for us because i had this fight with getting him to nursery every day (when he started nursery i couldnt leave him for months unlike the other kids thats mum or dad dropped them off and they settled straight away)he cant eat certain foods due to texture ive gone to sensory classes and he scored extremely high on the checklist. He cannot wait in queues or walk far, he has meltdowns and tears he cant go to places for meals etc if its busy his anxiety goes through the roof. Eventually we were palmed off with sensory processing and the griffiths test was done is this the only way they test for autism? he scored 'below the norm' on average has the mind of a 3-4 year old and they wouldnt give a result because he refused to speak at all! what does this even mean? what does below the norm mean? I feel like im fighting a battle that i will never win and i refuse to give up cause with my child suffering at the meantime i dont want him to grow up suicidal or depressed because he was failed help and everyone gave up on him.. he doesnt even want to leave the house most days and his aggression is like a light switch hed rather be alone than have friends and he does say this. School armistead health visitors gp and inclusion group parent2parent want him seen by calmhs to be tested for adhd/odd but they keep refusing to see him due to how big the waiting list is no matter how many people refer him... i feel like im at a lost cause and i dont know where to go from here... also armistead said kids cannot have issues such as anxiety and i question if im wrong of theyre wrong???
moral of the story what does 'below the norm' on the griffiths test mean and is average 3-4 for a 6 year old fine or not?
is there anything else i can do? my son is highly intelligent with lego,maths & how things work hes obsessed and thats all hes interested in he cannot focus for more than 3 minutes on one thing hence why school are struggling.. whats your opinion do you think he shows signs of autism or not? Am i stressing over nothing? this is just a brief encounter..
if your children have anxiety (if children have anxiety?) what do you do that helps?
Hello desperate mum,
well done for staying strong after the long journey over the past 6 years
My daughter is 14 and has diagnosis of ASD at aged 13 .I am no expert on diagnosing ASD ,but I can share my daughter stresses and what can be done
loud noises- voices motorbikes ,sirens, hand dryer -she would always lash out and kick me when they were turned on in public toilets .why-because it hurt her ears so much .recently on the tube we had the ear muff on and glasses ,and I also had to hug her tightly to make feel safe and lessen the distress.
we now have ear muffs-noise cancelling for shooting and smaller discrete ones ,although they are not as good
bright lights in shops etc -they make her very very tired and .she is unable to think or answer questions or make choices. why sensory over load
-we wear sunglasses -you can also get tinted lenses also have a red and green wrist band that she turns over to red if distressed. We hold hands all the time. she like the pressure of holding a hand when out in shops .I only shop with her at quiet times .she also wears a heavy coat and a tight tee shirt -this gives a feeling of security and comfort
she likes soft textures cuddly teddies -and has loads around her bed -they make her feel safe .a weighted blanket helps her feel safe and sleep better well
for injections she has a buzzy for shots - in the shape of a bee that she holds over injection sight before the injection is given ,because she is super sensitive to touch
If you do get a diagnosis a passport of care is available on NAS website for autistic people who may require medical treatment.
she also anxious which is something we are working on
keep a diary of evidence of stresses behaviours ,triggers -what's happening at the time etc to present at your next assessment
Definitely Phone the National autistic website and get expert help .
I really wish you well ,