Marc's story

by Allison
(the Netherlands)

Marc was born in 2004. He was born in the Netherlands. I felt already after a few days of his birth that he was different. I can't explain how. It became very apparent after a few weeks that he could not be soothed by anyone other than me. Even his father caused him to scream loudly. He was difficult to sooth to say the least.

He was very difficult to console as a toddler as well, and sleeping was an ordeal. He just wouldn't sleep on his own, unless in his stroller or in the car. I always blamed it on our traveling, as we both lived far from our parents, that each time we traveled we would upset his sleeping rhythm. This was probably true to some point, however in our ex-pat community it seemed we were the only ones suffering this. I tried every method I could find, without success. I remember for 4 hours doing the 1 minute, then 2 minutes, then 3 minutes, etc., sleeping technique . It simply didn't work and I got comments from neighbors 2 houses down about the noise. I also thought my son's howling had no limits. After all, I caved in, perhaps making it worse?

He was also a child that woke up crying. I can't remember a time he didn't wake up crying in his first 4 years of life. I remember trying to search the internet to find out if this happened to more kids. I couldn't find any answers. He also looked miserable. Many people asked me why he was so sad, or if something happened to him that day. Alone with him, he was a happy kid, but it is true the moment other people came around he was miserable.

The daycare complained that they couldn't connect to him. He cried every time I left him. Luckily it was only 1 or 2 times per week. I felt like a horrible mother, especially when I saw the other kids having a connection with the childcare giver. They would hug them, want to be around them. My son would only scream if anyone came near him.

As a toddler, on the playground he avoided all play equipment, which my mother and I found very odd. It wasn't until he was about 3 that he actually took some interest. Before that it seemed he was looking for an exit.

When going to watch a dolphin show, just as the music started he started screaming, so much so that we had to leave (he was probably 3). It was obvious to us that loud sounds effected him greatly.

When he was 6 he said he dislike school playgrounds as they are too noisy. He also didn't like calm gardens as the birds sang too loud. We couldn't play music nor have windows open in the car.

He sensitivities to smells began to be noticed around this time too. Now any strong perfume or food odor he needs to escape.

We had a very traumatic year when he was 7. We are not sure of the triggers, but it was a year of tantrums, of
what seemed like depression, he started to compare himself to the world and he came out the loser each time. His sensitivities were greater than those around him. His anxiety was high, his fear was high, it was like a nervous system out of control. We looked for professional help. We feel somehow failed by the Dutch system who diagnosed him readily with a PDD-NOS diagnosis, without really helping us solve anything. I find the diagnosis limited, as it is such a wide spectrum and seemed like everyone can fit into this. It was too broad to help Marc. Their solutions were nothing more than what we did on a daily basis, which wasn't working and why we sought help.

We ended up making a few changes, like from the Dutch school system into an international school system with more resources and I stopping working to spend all my energy in making a calm environment for him.

I'll mention here the triggers of his heightened sensitivity, should it be similar to others:
*seeing old pictures or films of himself. He gets so sad as he wants to be young again and cannot be. This nostalgia is great. He remembers his feelings and thoughts when he was a toddler, which he holds dear.
*thoughts of losing something precious to him, like his teddy or death of anyone close.
*He fears danger, and if he is aware of a danger he worries more than he should.
*fingernail cutting, for 2 days he claims he cannot touch anything
*Hot water in the bath. Needs to be room temperature, not hotter.
*cold milk (or any drink), I need to warm it to room temperature.
*pain he cannot stand.
*food needs to be separate on the plate. He cannot eat them mixed. Sauces are a problem. (if he does, he complains almost like he will choke)
*shiny jewelry distress him. He claims they are so sparkly and beautiful he gets distracted and can't stand it. He also hates the sounds of bracelets, or the feel of necklaces when he is hugging me.
*some textures in clothing he cannot stand. No high collar sweaters. No zippers on sweaters.
* he cannot stand for me to be upset. Especially if I am upset with him. His world collapses.

On the brighter side, he is caring, intelligent and a joy to listen to his thoughts. He has an excellent humor. He is fair and honest and has a great deal of friends. He is very well behaved at school (possibly for his heightened fear of getting into trouble)and sails through the subjects at school. He is a great friend to his little brother. There are many mothers that want to trade him for their child (possibly because they don't see the monster he becomes when he releases the pent up frustrations/restrictions he internalizes during the day). So yes, there are some breakdowns in the evenings especially when he is tired, but on the whole I'm proud of him of how he copes, and I see him being able to talk about it and we are giving him space to release. I know it is not easy for him. I do see that it is getting easier with age and awareness.