Published on 12, July, 2020
Im new here but wanted to tell my story to see if anyone else had been in a similar situation to me. I feel like I need a bit of hope
So when my boy turned 2 things started to change. He went from eating everything to full refusal of all hot foods bar Cous Cous and Chicken Nuggets. Still to this day (nearly two years later) he is the same, will not eat cooked foods and has a very limited diet with other foods in general too. He is very sensory based and refuses to wear certain clothing, does not like lots of noise and high pitched sounds and has quirky mannerisms such as feeling and sniffing hair, tapping my legs and making a Di Di or Gii sound. He does not like being touched and does not like cuddles or affection (other than from a very select few people). If someone touches him he can get very aggressive verbally and stressed out. He is very sensitive in one way but in others not so much. For example he could bang his head quite hard and not even notice but if he was to get the smallest graze on his hands or legs he will sob and sob saying how much it hurts. (There is so much more I could put but just doing a few examples)
As he has got older we have noticed that he does not respond very well to everyday life demands and we have found ourselves having to become very specific with the way we talk to him and respond to him. He can be very angry, if I'm being honest he is angry about 70% of the time and he is very impulsive. He goes from 0 to 100 in seconds and his moods are awful, everyday is an emotional roller coaster. We could say something perfectly normal and fine to him and he will snap back and be verbally aggressive with us because we haven't worded it how he likes it to be worded. We did some research and came across PDA. Now this was a big find for us as PDA could literally be written about my son. It is him all over, no denying it.
I have spoken to numerous professionals about my son and they all admit they see something there in him however nobody seems to be helping me take it further. My son has been referred twice to Comm Paeds and both times been discharged due to lack of evidence. The trouble is my son can mask things very well. He is SUPER clever for his age (and in no way am I tooting my own horn) by 9 and a half months he was walking, he could identify animals in a book when asked to find them. By 18 months he could find body parts including brain, heart, eyebrows etc and name all colours, numbers to 10, vehicles and shapes. He even began recognising certain numbers too. Around 2 years old he could recognise over half the alphabet and by 2.5 he could spell his name. His speech is phenomenol and extremely advanced. When he was 2 he was opening Xmas presents, naming the toy as well as what it was made from "oh thats a plastic dinosaur with metal screws". I can't keep up with what he is achieving. What I'm trying to get at is I've been told numerous times that he is not Stereotypical Autistic enough. Because he can give eye contact and attempts to make friends and doesn't hand flap its like noone wants to know. Because he is clever and communicate he's "okay".
Anybody else having my struggles?
now the food issue maybe because he perhaps had a case of uncooked or bad tasting of that food before, that just puts anyone off their appetite for it in the future even if they liked it before... just having one that was off, your memory of that food is your last and strongest, if the last memory of that food was it tasking horrible or being off or making you feel sick, then youd never have that food again even if that was a one off, you dont wanna risk that... i think thats why i turned into a fussy eater as a kid, because it was always horrible or off... infact thats why i dont eat cereal or drink milk anymore as most of the time from what i remember the milk was always off, and one time with cheerios there was a moth infestation in it with thousands of moths in but i ate a mouthful because i didnt have my glasses on to see it clearly at the time. put me off cheerios forever.
as for things that can hurt, i notice i have a very strong tolerance to blunt force trauma and can take blunt damage and ignore it easily.... blunt damage is pretty ok to put up with and even soothing.... but cutting damage, such as a paper cut... yeah that hurts lol it maybe the same with your kid. just super resilient and even liking blunt trauma... but super sensitive to cutting type damage. which feels aweful as you feel it slide through your skin.