We were blind not to see our son’s unique sensory profile from a young age, but then again we didn’t even know there was anything wrong until we started to question things at age 6. Perhaps I should rephrase the “anything wrong”. It wasn’t “wrong” – it was simply his own sensory profile that was different to most children of the same age.
My first child was a laid-back baby who hardly cried, enjoyed being in my arms and generally very chilled. My second child seemed so different, very upset and hard to settle. He would arch his back when I tried to cradle him in my arms so I searched for answers thinking that he may be allergic to the milk formula or maybe it was colic. I know two babies can certainly have different characteristics but even from being inside my tummy I knew this baby was going to be different. I could sense his personality from deep inside me the way he moved and wriggled non stop – he was going to be a fighter. I felt there was determination and a strong character in there. Little did we know then that we created a unique child that was different in his own ways and whom I would be so proud of in years to come.
We lived in a townhouse some years ago and I remember clearly how distressed my boy would become when the neighbour used his lawn mower. Now me being oblivious to the autism world back then, I would smile over the fence to my neighbour and tell him its fine, my child will get used to it – don’t worry its only the lawnmower! Little did I know my neighbour had a son who was also aspergers. I guess might have suspected something before we did. This was at the age of around 2 years old. Thinking back, our neighbours were probably trying to drop hints as their understanding was so much clearer than mine, I just thought we had a sensitive child.
We got to the playschool years, again I was in total oblivious mode.. head in the clouds. My child didn’t want to really stay at playschool and he would cry to be with me. I had my first child at 21 and passed him to my parents whilst I held down a job, but this time it was different I was in my thirties, a lot more mature and had the chance to be a stay at home mum. I relished in the fact that my son wanted me and was happy to reduce the playschool days as much as I could to value the time I had with him before he started school. I never thought that he couldn’t play with others or there were warning signs of distress from his sensory needs.
We picked our first holiday abroad, a hotel right on the beach! Perfect you would think.. till we left the hotel to go on the beach. At age 4 he would scream when we let his feet touch the sand, as completely oblivious parents we laughed thinking our child was just acting peculiar. I argued with my husband “He’s got to get used to it, let him feel the sand, he will be fine.” How gullible was I!? The whole holiday we spent days trying to tackle the beach but came to the conclusion that our child just didn’t like sand! Again, we were so oblivious to our child’s sensory needs. How couldn’t we have spotted this yet? The sensory feeling of sand on his feet, or even hands.
What family doesn’t like coffee? Well, I’m unsure what I would do without a coffee on a morning. This one makes me cringe thinking about it and STILL, the penny hadn’t dropped. The morning routine was grabbing a coffee en route to school. We would hear a gagging noise, our child’s eyes would be streaming, we would explain over and over again it’s only a drink. The smell to us wasn’t strong but to him, that smell of coffee on a morning was like a rotten egg. We had to stop drinking coffee in the car, his senses were that strong he would be the first to tell us if someone had been in the car with a cup! But again we had no idea, just thought our boy was a unique quirky little chap and made adjustments without even knowing a diagnosis was down the path in years to come.
We’ve been lucky to manage to get out as a family and still do regularly despite his PDA. I am hoping this may long continue though thank goodness for electronic devices! This one I will never forget as we tried it a number of times but looking back now all these signs were part of his unique sensory profile but no one knew this. We tried the Indian restaurant, the minute we were seated the same thing started to happen as in the car with coffee! Gagging noises and looking like he was going to be sick, we rushed him off to the toilet. The first time it happened we left in a rush but once we got home everything was fine again. We ended up with a take away that night wondering whether he could possibly have caught a bug? We tried a second time a few weeks later. We got seated and the same scenario happened. We rushed through our starters and embarrassingly left the restaurant as others stared at us thinking we had forced a sick child to come out with us!
We gave it one more go, we spoke with our child pre-warning him that we were going to eat out again, reassuring him that he is fine now and doesn’t need to act like he is poorly when we got to the restaurant. Third time lucky right? You guessed it we lasted 10 minutes and left. The smell to him was so strong his little senses couldn’t tolerate strong smells.
Birthday parties … Oh, the joy! We were lucky to be surrounded with some good mums at the beginning of the school journey, sadly this fizzled out close to the breakdown of his mainstream school setting, but that’s a different story.
We were privileged to be invited to most parties at the beginning and I am so grateful for this as I hear of others that are sadly never included which must be heartbreaking, but equally, each party would end up in tears and still be heartbreaking for us. He didn’t do rough and tumble with the other boys and was very sensitive to touch so football parties went down a treat … not! The whole running around and noise that a child’s party brings, the smell of the juice that the children were drinking at the table, then the whole confusion of taking turns in games and the whole autism difficulties sent him into meltdown each time with me hugging him in a corner telling him everything is ok.
You would ask yourself why we would still accept the invitation and put him through distress if he ended up in meltdown after each party, but try telling a child that he can’t go because he got upset at the last party? I couldn’t. We tried each time to get through parties with me being the meltdown partner in the corner of the room at each one. I would never make him feel excluded even when we got his diagnosis, each party he was invited to he chose to want to go, so I would put that strong face on and brace myself to be rocking and hugging him in the corner of the room again.
There were so many things looking back now. The unique sensory profile was hitting us smack in the face without us truly understanding it! I wished we knew earlier to help and understand through his eyes.
Whilst every child can have a dislike to certain smells, touch and even taste, a child with aspergers or autism may display an extreme reaction to these. I have made a checklist to help identify where certain reactions could signal an extreme sensory profile from our experience.
- Problems with eating
- Refusing to go to anyone but yourself
- Extremely irritable when you dress them, seems to be uncomfortable in clothes
- Resists cuddling, arches back away from the person holding them
- Cannot calm self, looking at toys or listening to my voice
- Has a floppy body, bumps into things and has poor balance
Pre School Checklist
- Overly sensitive to stimulation – overreacts to or does not like touch, noise, smells
- Avoids performing fine motor tasks such as using crayons
- Appears clumsy and awkward
- Difficulty learning new motor tasks
- Has difficulties making friends
- Demanding or hard to calm down
- Difficulties with transitions
- Sudden mood changes and temper tantrums that are unexpected
- Does not like touch, smell, noise, overreacts
- Overly sensitive to stimulation
- Easily distracted in the class
- Appears fidgety on the seat
- Overwhelmed when in the playground
- Avoids fine motor skills such as writing
- Appears clumsy
- Difficulty in making friends
- Does not like being touched
- Avoids stimulating environments such as assembly sensitive to sounds
- Difficulties staying focused
Whilst this checklist can’t diagnose a child with Sensory Processing Disorder it’s a good idea to make notes to see if there is a regular pattern to seek professional advice – I wish we had understood earlier.