So whats your story?

[starlight78]

Hi,
My 15 year old brother is severely autistic with no communication. After years of battling with his violent behavior, he is finally being sent away to a boarding school. This is breaking everyone's heart, mostly my mum's. My brother was a bright child who was ahead of his milestones. By the age of 2, he could write all the letters of the alphabet, numbers up to 10 and knew all his shapes. His speech was excellent. But suddenly, he began to regress. Initially I noticed that he would kind of jerk all over his body and he would cry out whenever he did this. He lost his confidence and would be scared. In the space of around 6 months, he lost all his speech and by 3 years he could not hold a pencil, he would just chew on it. All these memories are heartbreaking.
My son (9 years) has also just been diagnosed with aspergers and we are struggling to help him as he has pretty bad communication difficulty. Also, his behaviour is becoming increasingly challenging and he can become violent.

So what's your story? When did you notice a change in your child? How difficult or easy was it to get a diagnosis?

Thanks

Hi, I am really sorry to hear about your brother, I just hope you all get the support you need. Does your son have any help in school? Statement?

Our story is very different to yours....within 4 days of my daughter being born I knew she had autism although I didn't have any experience with autism I knew she was special. Extremely alert within hours of being born and able to follow people walking around etc! Just amazing! Then when she was 4 days old she would look at the face but when I looked back she would turn her eyes and refuse eye contact! All captured on video. Lol. At 9 months able to recognise numbers up to 30, alphabet and shapes...we took a trip to the GP where I raised my concerns and was told she was extremely bright but no way did she have autism! At 2 years she still didn't have any speech and we were referred to SALT and we then had a referral to pead. Again same story with the paed but SALT were agreeing with us. Finally had a diagnosis at 4 yrs! She had full time 1to1 and statement before starting school. She has just turned 7 and is fluent in 2 languages and doing well in school. Some days are hard and doesn't have much awareness of dangers etc but wouldn't change her one bit. She also has a diagnosis of Crohn's Disease and SPD.

I knew Dd3 was different from a very young age too. She was terrified of noises and wouldnt take a bottle from anyone except me. She was a very easy baby and made few demands.

She spoke early and in sentences and could count from an early age too.
She had lots of routines, rules and obssesions that we all had to stick to though and if we didnt she would go completely hysterical and took ages to calm down.

Starting school was her worst time it was an absolute nightmare. We started the diagnosis process when she was 5.5 but it took till she was 9 to get the diagnosis of ASD.

She is now in an amazing school where they make every effort to meet her needs and make her as confident as they can.

We have a lovely little girl who makes us laugh and cry, sometimes at the same time. She can be challenging and is occasionally agressive but i count my self lucky to have her.

I am sorry that you are all so sad about your brother going away to school and I hope he gets on well and begins to learn some new skills in a specialised setting.

Good luck

I knew ds was different from his very first days, he was nothing like the three I had had before him. In his red book HV wrote at his six week check "Mother has concerns there is something wrong, babe healthy and feeding well ? pnd" It was the start of two years of battling with the GP and HV to get a referral whilst coping with a child who slept between 2 and 4 hours in every 24 who was aggressive and destructive, who could climb seven foot fences and door frames and was forever on a mission to escape. Who could read and spell but couldn't speak, who could tell the time and went ballistic if his routine didn't run to the clock.
At 2 and a half a SALT referred him to a paed at his first appointment because GP still refused to accept he had any difficulties. At his first appointment paed was incredulous that GP still insisted he was "normal" and asked what I thought was wrong. When he agreed when I said autism it felt like a huge relief tbh following an MDA his dx was moderate autism and complex learning difficulties. A reassessment at 17 changed the dx to severe autism and no learning difficulties, selective mutism and sensory modulation disorder.
He is my pride and joy tbh, he changed me for the better in lots of ways and he has shaped our family and I'm sure my older three are the tolerant, independent and resourceful young people they are because of having ds in their lives.

Dd2 was born soon after ds's 8th birthday she was nothing like ds she laughed and smiled and cooed and slept I was pretty sure she was ok. I had my first warning bell when she could identify a square at 8 months and she didn't seem to see me as special (there was no separation anxiety)
Around her first birthday she started making a whining noise and over the course of a few days lost all of her skills. I knew then it was autism. Once chromosome checks came back normal and metabolic disorders were tested for and ruled out paed at 17 months said we are probably looking at autism and this was confirmed a week after her second birthday following an MDA. Dx was moderate to severe autism and GDD.
Dd has been my project tbh, I threw everything I knew at her that I had learnt from having ds determined that she'd make the best progress possible. It worked, she still has autism of course but she is so much more able than ds even though at dx it was felt she was more severe. Her HT calls her exceptional academically I'd say she's pretty bright but more importantly she is happy and loving and delightful tbh.

Ds and dd share a special bond and what brings me most pleasure is watching them together and seeing the love between them.

My DD is 8, was born healthy, normal development walked earlier than avarage, very slow speech no words really untill at least 2. She started to have episodes of fainting, seeming to fit when unwell age'd 3 although was dismissed by health professionals at the time. Untill a few years later
Age'd 5 she was refered to ENT for hearing issues, after hearing test showed low frequency bi-lateral hearing loss, grommets inserted and test showed cochlea wasn't funtioning as it should. (unusal as normal sensory neuro deafness if high frequency)
Aged 6 finally got hearing aids. Was talking fairly normally at this point although still very behind at school.
Fainting/fitting became more comon & refered to pead MRI done oct 2010 normal. March 2011 balance started to wobble a little, Negative for X linked syndromes. Proved carrier of Connexin 26 syndrome. Referred to Neuro at Oxford John Radcliffe
Oct 2011 Nystagmus developed, Balance had waivered to become very apparent (truncal Ataxia)
Nov 2011 -Bloods, Lumbar puncture, Bone marrow biopsey, VEP (vestibular testing) EE ECG ERG (electrionic retinagram) ultrasound of heart proformed, Normal results.
Managed to get her on a heart monitor when she had an "episode" Plus disapears, sats still 100%

Jan 2012 - Intention Tremor Present - aquired memory deteriorating - Not walking well unaided unable to run, stand on one leg etc
May 2012 - MRI scan - Showed Cerebellar Atrophy
June 2012 - Further step backwards unable to walk at all unaided
July 2012 - speech dysthria now present, fasiciculation now present
August 2012 = Broken speech, not walking at all. Curving spinal posture

Muscle biopsy still to come.

Still have no name for DD's condition but neuros confirmed it is progressive & cerebellum will probably continue to shrink.

Palative care probable option.

Hi Starlight
How is your mum doing? Is she getting any support with what is happening with your brother? Is she happy with the school your brother is going to? Maybe they can find ways to manage his anger and violence. Big hugs as I imagined this has been an awful time for the family. Is your brother aware that he is moving?

ds2 was born at 28 wks & had a rough time in SCBU.
although there was no firm committment from paeds i knew ds2 had some long term issues.
he came home after 2 months but never cried, had no response to people, would just lay in his pram either awake staring or sleep, but never needed comfort.
he took lots of stimulation to get any response
very difficult to feed, took hours literally, had a poor suck & severe reflux, chronic lung disease made sucking, breathing etc hard work.
He was very late reaching all milestones rolled over at 1 yr, sat at about 15 months.
Was being followed up by physio & paed
At 18 months was dx'd with GDD
at 19 months was discharged by hospital paed & handed over to community paed for long term support - She has been amazing!
20 months was dx'd with Cerebral palsy, & GDD
24 months was autism dx was added
DS2 is 10 now & has just stomped past me, in his underpants to watch yet another black and white war film.
He is at a ms primary with 1 to1 support, is happy & exceeded everyones expectations.
His current dx is autism, mild cerebral palsy & learning difficulties, severe asthma & an unamed (well they havent told me if there is a name) digestive/bowel disorder.

Its amazing how some of you have very complex cases yet somehow manage to see the bright side. Each special needs child is different and special in their own ways. They somehow manage to make us cry, laugh and give us goosebumps when they're asleep....! My son with Asperger's can be so annoying to the point that I give up and start laughing. Its nice to just chill out and join in the fun sometimes!