During my pregnancy, my baby was scanned so many times, suspected there was something amiss, his head circumfrance seemed too big, then too small – Birth was helped by ventouse due to a dropping heart rate, but all was fine. From birth my beautiful boy suffered from a distended stomach, excess wind, vomiting, constipation leading to painful spasms of the stomach, which meant he only cat napped (2 hrs at any one time for almost two years) Suspected Hirschsprung’s disease resulted in a bowel biopsy and a Barium x-ray both negative but had left him suffering massive additional stress and more sleepless nights. After being told my son was not getting enough breast milk, went on to bottle and formula, then being told he was taking in too much air from the teat, then being told he was hungry, then starting early on solids (which actually did help with his constipation a little) a dietician referral put him on a wheat free, gluten free diet, the only results from this that we noticed was, less wheat did help a little with the bloating; after a while put him back on a normal diet reducing his wheat intake.
My sons speech was, and I know this due to his little red book (personal child health record) which I thankfully kept updated. By 9 months he knew six words and by 11 months it deteriorated down to two words. By 19 months he had four words and by 24 months it had increased to around eight – He had hearing tests which showed that his hearing was very good. He had the worst tantrums, head banging on floors, biting and hitting. Potty training was horrific because he enjoyed decorating the house with his poos (that went on until he was four ). Mother and toddler groups were a nightmare due to his aggression and I felt other parents looked at me like I was a bad parent. At nursery, he was put on the ‘Action Plus’ programme, a monitoring programme. Home life was difficult, in so many ways. His sister, four years older struggled with the constant crying and tantrums from her brother – and I struggled to know what to do for the best… he only seemed truly relaxed and happy when he was swimming. His speech did start to improve slowly from the age of three, and then little by little he began to link words.
Noticing he fell over a lot and found it difficult to run properly and to judge distance stepping up and over objects, his nursery obviously had to follow up on all the bruises, a brief home visit soon put any questions to rest and a diagnosis from a physiotherapist called it a ‘stiff gait’, possible issues with his gross motor skills. More meetings, more unhelpful advice, more tiredness, more battles. An initial diagnosis from a doctor said ‘Speech and language delay’. Feeling he wasn’t ready for school his nursery kindly agreed to keep him for another year. They struggled to understand this complex child, but they were caring and tried hard.
SCHOOL – After his first permanent school exclusion from a speech and language unit, another doctor recognised that he met the criteria for autism, well not quite, because my son had always given good eye contact, enjoyed big hugs and wanted to play with the other children. He was given an ASD Statement of Special Educational Needs which included Speech, Language and Communication Disorder, and to cut an Extremely long story short… After three permanent school exclusions from three different types of schools, home schooled for eight months whilst being rejected by many, many other schools, a CHAMS report, a Meath Examination, a battle with the County Council SEN department, a newspaper article, some campaigns involving letters to local MP/Ombudsman/ amongst others, an Emergency review meeting/more reports/ more battles /more letters… and so…
Where are we today now that my son is almost nine years old…
His ASD condition is called Pathological Demand Avoidance Syndrome (PDA), he is mentally five years old, with Speech Language Communication Disorder and Dyslexic. Although his stomach/ bowel problems are still an issue, it is manageable. He currently goes to a special needs school who have some experience with Autism, EBD, ADHD, ODD etc But more importantly they have a flexible manner, a gentle and understanding approach with a low stimulation, calm environment. So far both my son and the school teachers/carers are coping and learning from each other, and are relatively happy.
Some signs of PDA
- Panic attacks /challenging behaviour: aggressive tantrums, outbursts, kicking,biting, hitting, swearing, shouting and throwing (fight or flight, often with no obvious triggers)
- Communication abnormalities: Echolalic speech, literal understanding of speech, neologisms (using idiosyncratic words instead of conventional speech), language disorder to varying degrees, inappropriate speech for social context
- Social communication
- Lack of turn taking and difficulty understanding social rules and play
- Difficulties knowing how to react to another person’s behaviour
- Difficulties accepting that there may be other perspectives, not just a single perspective
- Limited gesturing
- Rigid thinking
- Accumulative levels of stress
- High anxiety and Low self esteem
- Sensory issues – materials, noise, overstimulation, sunlight in eyes, sensitive to temperature
- Mentally five years old
But he is loving, handsome, kind, sensitive, qwerky, has a great sense of humour, enjoys cuddles, gives full eye contact and tries desperately hard to be accepted from peers and the confusing neuro diverse world.