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?
Crikey!
You could have written that about our son too. He is exactly the same.Following not much help from School - we were told our son "Would grow out of it" and there was "Nothing to worry about" ,the old fave "He's fine in school" and ever our Parenting Capabilities were questioned.
Like you, we did our own research and read heavily on just about everything we could do find on Autism, ADHD, ODD, Depression, etc, etc.And then we came across PDA - and had the same 'lightbulb' moment. And everything seemed to fit.
So - we have another meeting with SENCO at his Primary School - who told us (quote) "You don't become an expert in mental health by reading stuff off the internet" and then went on to tell us that she had never even heard of PDA.As far as she was concerned - he was fine in school; and that was that.
We confronted her with 3 years worth of daily diaries - which showed chapter & verse, every single day, the meltdowns, the triggers, the good days and in an "edited highlights" version - it showed a clear pattern in the changes in our sons Anxiety and of course his Moods and Meltdowns.This couldn't be argued with - given the Mood swings and increased anxiety seemed to be around changes to routine, the unknown or something that could be counted as sensory (noise/colours etc).
Upon moving up to the next year, within the first week of School - the Class teacher spotted Autistic Traits and a possible Anxiety Issue. So, literally she bent over backwards to help us - she provided a weekly timetable in advance - so our son knew what was happening.She updated us (via email) daily on any possible triggers in school and also helped push for help.
By this time, our son had been masking this for the best part of 5 years.
We had no end of School Refusal mornings - where on many occasions - he was arriving at school 3 or 4 hours late - having locked himseld in the bathroom.On one occasion, the SENCO and Attendance officer visited the house (after we had spent 2 hours calming him down) - which made matters worse. So - that day, instead of being an hour late for school - he went into shutdown and ended up with the day off school to recover.
The SENCO and Attendance officer had to leave, after 5 minutes as the contents of the bathroom were hurled down the stairs at them. The left, telling us "We'd better leave, as we are not helping" (No Sh*t!)
By this time, we had referred our some to CAHMS to hopefully get some answers/diagnosis and he was put on the Autism Assessment Pathway.
The SENCO finally brought in external help - to suggest interventions at School.We met with The Local Authority Autism Awareness team and our sons class teacher - and a support package was drawn up (nothing that cost anything, just simple things) - and the LA Autism Awareness team, I cannot fault - they did a lot, and provided (as did this website!) a lot of very helpful information.
Yet the SENCO still thought those interventions were too much - and not many got put in place.
Then along came something called Covid.
Upon the return to school - it was our sons last year in Primary School - and his anxiety levels were at an all time high (as the move the Comp was on the horizon).
His new class teacher was amazing, The SENCO was still on the "There's nothing wrong" thing.At the same time, our son recieved his Autism Diagnosis - though they didn't recognise PDA.The School however continued with their basic interventions.
The transition period for the move the Comp never happened; apart from 2 weeks before the end of term - where he was chucked in at the deep end with no interventions (the SENCO hadn't passed his file on to the school).
So - where are we now....?
Our Son started comp in September 2021 - with no proper things in place to help him.So naturally,, we had the runs of School Refusal, Violent Meltdowns and threats from the school for "no attendance".What the school did offer - in our opinion, was too little, too late - given he had spent the last 8 years masking is anxieties and exploding when he got home.
He lasted a total of 6 weeks before he came home from school in early October and broke down. Burned out.
That was his last say in Full Time education; we removed him from the school register and he is now homeschooled.
In our situation - he has changed, become a different person - and enjoys his school work.As he is very "hands on" we concentrate on hands on & practical education - so he can do Maths - without filling out sheets full of sums (besides - I am dreadful at maths!!!).
He has control over his "timetable" when he does it, and how he does it. He may not feel like working on a (say) Tuesday, but instead will do something on a Sunday etc.
We still get the metldowns at times - but they seem to be through frustration.Also - the way things are presented and worded make a huge difference.
For instance "Tidy your room" would almost certainly trigger a meltdown or he'd just ignore you.
Saying something like "I need a hand doing some tidying, can anyone help" - chances are he'd jump up, offer to help and even go and do his room!!
Apologies for the War & Peace on this; but that's our experience so far!
You aren't on your own.