This could be a long one, but I’ll try to stick to the most useful bits! We are a family of 4; a mum, a dad, a son, a daughter. Our son is nearly 5 and has a diagnosis of Autistic Spectrum Disorder with Demand Avoidant Profile; he has autism and PDA.
The Early Days
T was an unsettled baby from day 1. After a straightforward pregnancy and a mostly lovely labour and delivery (true story – I actually love giving birth!), he spent the first night of his life screaming, writhing, refusing the breast, and snorting like a baby dinosaur. This was to continue well into his first year of life.
I’ll summarise T’s first year:
- Screamed like I’d never heard before within moments of going into the cot or pram
- Didn’t nap for any longer than 15-30 minutes at a time
- Wasn’t soothed by cuddles or breastfeeding
- Eczema from the first weeks
- Had to be held in a sling or placed in a bouncy chair at almost all times
- Silent reflux diagnosis at 3 months
- Prescribed Omeprazole at 4 months to control the reflux
- Prescribed a dairy free formula at 5 months and diagnosed with a cow’s milk protein intolerance
- Dairy free during weaning
- Never slept at night for longer than a couple of hours at a time
- Would scream for up to 10 hours a day
- Didn’t instigate play or interaction
- Rejected Mum specifically, but showed very little interest in anyone
- Started banging his head on the floor and walls at 10 months old without seeming to feel pain from it
I’m sure you can appreciate how distressing it was for us to see our much loved baby in so much pain, and also for us to be rejected by him. He did roughly meet his milestones for smiling and laughing, but these actions weren’t commonplace until his silent reflux was better controlled.
Communication and Social Interaction
T always seemed a very wise soul. As a newborn we lovingly referred to him as our mini old man because his furrowed little eyebrows and observant behaviour made him seem so wise and clever.
As parents, we naturally wanted to snuggle our baby boy and entertain him, but we realised quickly that to him, we were facilitators. He wanted us nearby, but rarely engaged with us of his own accord, unless we mentioned going out. T could sign from about 8 months old, so could ask for basic things such as food and drink, nappies, going for a walk, swimming etc.
He didn’t really babble much in that first year, but by about 16 months old he could sign and speak roughly 30 words. He never said ‘mummy’ or referred to me by any name. He used the word ‘Baba’ for me for a couple of months, then at 18 months old finally started saying ‘mummy’.
Love and Affection
When T was just 12 months old I became pregnant for the second time. He looked at the 12 week scan photo and declared that it was a fish, then as my bump grew he would enjoy putting his hands on “Mine baby” – saying that my now outward belly button was the baby’s nose. Towards the end of my pregnancy he cuddled my bump and kissed it – these were the first openly affectionate actions that he instigated.
When M was born, T started cuddling me more, almost as if seeing M having feeds and cuddles showed him what to do. He didn’t ever seem jealous of M, and was not in the slightest bit concerned about her being attached to me a lot of the time. Daddy and Nanny were on hand to take T out a lot, so as long as he wasn’t stuck in the house, T was generally okay.
T has always been given regular opportunities to interact with other children, and at each stage of his life he has had one or two peers at a time who seemed to get closer to him than the others. In his first year at nursery from age 1, T was fawned over by a lovely child, and I was pleasantly surprised when I would see photos of E cuddling T and climbing all over him, without him screaming at her!
He never really joined in with group activities, and still doesn’t. He seems to enjoy the idea of friends, but finds it very difficult to join in and thus is often around the group as opposed to within it. He has friends, and plays well on a 1:1 basis, but dictates how games and activities should be done, and becomes annoyed when his sister or friends do things differently.
And Now… Raising a young child with Autism and PDA
T is nearly 5, M is 3. T is in reception at a very small village school and is hitting his academic targets without any problems within the classroom. He is a clever, articulate, kind little boy with a great sense of humour and a huge heart.
We are so proud of our boy, but that’s not to say we don’t have a very tough life.
Raising two small children is a challenge. Raising two small children when one has quite a complex neurological condition which is horrendously misunderstood by both medical and social communities, and the other is a typical toddler/pre-schooler who has a sassy attitude and has perfected the role of ‘annoying little sister’ is – at times – unbearable.
We are not an Instagram perfect family with a spotless house, unique organic cotton clothes, and laughter every day as we embark upon exciting adventures. Sometimes we are, mostly we are not.
We shout and we cry, we hurt, we fear. Our beautiful T can go from wanting to give all his pennies to homeless people, to screaming about how his brain is telling him he can’t put his pants on, and punching his own face, all in a split second.
PDA is exhausting for all of us, but especially for T, whose young brain is conflicted all the damn time. He masks like a pro and holds it together at school, but by the end of the week, or if something unexpected has happened during the day, he is like a bottle of fizzy pop that has been shaken and shaken all day and when I pick him up the lid comes off and he explodes. We are his safe place to let it all out, but that is traumatic and devastating to see.
I’ll be writing more blog posts about various aspects of life, as well as sharing the story from the perspectives of other key people in T’s life and – if he wants me to – T himself. Life With PDA is purposefully anonymous because I feel strongly that the realities of PDA need to be better discussed and respected, but I want to protect T’s identity until he is able to make the fully informed decision about how he talks about his life with Autism and PDA.