Ever since J was a baby he went through some pretty tough stuff. He was diagnosed with eczema at 2 weeks, his whole body was covered with sores, dry and cracked skin. It was heartbreaking to see, knowing there was nothing I could to take this away from him. When he was 6 months old, J was diagnosed with an egg allergy after a reaction to scrambled egg. He still has the allergy, which we manage by keeping him on an egg-free diet, but the eczema is still around – thankfully it’s no longer as bad as it was once.
When Did Things Start?
I first started questioning things when J was around 2 years old. He was displaying a range of behaviours that just didn’t fit with the “norm”, or at least they didn’t fit what I expected.
The first was his social skills, or lack off. He never, and still doesn’t, mixed with anyone, especially other children. He was literally stuck to me and his dad no matter where we went, J eventually got used to his grandparents but it was still hit and miss with them. He rarely engages with his sisters too, only interacting if it’s on his terms or if it’s of interest to him. I’ve seen K play with other children at the park or at nursery but with J, he’d rather potter about by himself. He likes to be alone, he clearly feels safer when it’s just him, and he likes to watch other children from a distance but he won’t approach them to play.
After that I started noticing other things, like his repetitive behaviour. He will find something to do and do that same thing over and over again, when others would get bored of this and move on to something else J will continue to do so. A while back he asked me to play with him; he had a car, a person and a toy dog. He would open the car’s doors and tell me (I was playing as the dog) to get in. I’d put the dog in the car, he would move the car just a few centimeters before telling me they were at their destination and to get out. As soon as the toy dog was out of the car, he exclaimed that we were to get back in again. We done the exact same thing over and over for a good half an hour. Just this morning, J had a pack of pens with a popper to open and close. He would take the pens out of the packet, put them back in and close the popper before starting the process over and over. I can’t even tell you how long he had done it for but we had watched a few episodes of Paw Patrol at the time.
J is very particular about things being on his hands and he will have an absolute meltdown if there is a hair tangled around his fingers, nevermind if one gets on his tongue! If he’s eating his jam sandwich and some gets on his hand, mid-sandwich, he will demand to have his hand wiped and will not continue to eat until it has gone. Although he is happy to play with things like Play Doh and water (unless it’s splashing him, he doesn’t like that) and even though it took us a very long time, he is now happy to play with sand, as long as it’s dry sand.
Another thing we noticed was his play, he doesn’t necessarily use his imagination to play. It looks like he does now, but this is because he copies K and whatever her imagination gets her to do. He doesn’t make up his own things, or his own way of playing. His favourite thing to do with his toys is line them up but it isn’t just toys, he likes to do it with everything, even food!
There are plenty of other behaviours that stick out but these are the most obvious along with his screaming, which we think may be a verbal stim that he has. I’ve done some research on the traits of autism but I haven’t delved too much into the world of Google searches as I know they can be very untrusting and usually end up giving you the worst case scenario, which helps no one.
Involving Health Professionals
So in January 2018 we saw the pediatrician, after a referral from our Health Visitor, she observed J and tried to interact with him (even though he didn’t even acknowledge her existence). After listening to what we had to say, and her own observations, she told us that she would like to refer J onto some other teams as she suspected that he had mild autism. It was a relief to hear that it wasn’t just in our heads but it was scary to think that our son, once again, had to go through something even more life changing. So we’re currently waiting to be referred to an Occupational Therapist for a sensory profile, the Child Development Team, Audiology for a hearing test and an Orthoptist for an eye test as well as attending the children’s hospital for a blood test to screen for genetics. It feels like we’ve been waiting so long to hear something, and I’m unsure how long we’ll actually have to wait, but I do hope we hear something soon so that we can get some decision on how we can help J even more than we are.
So far we’ve purchased a million sensory toys and visual aids to help with his behaviour, which actually seem to be helping him! The Health Visitor came to see us just before Joshua’s 3rd birthday and she has decided to put us on a 3 month care plan, mainly to check in with us and ensure that we are coping with J’s needs.
It’s hard most days, really hard, to deal with J when he’s having an off day. He’s able to communicate with us, in fact his speech is good apart from the clarity, but he doesn’t understand most tasks and he certainly doesn’t know how to express his feelings. When he’s excited he likes to jump and spin and when he’s angry he’ll throw whatever it closest to him. Breaking out of his routine isn’t easy and he gets so distressed by it, like this morning. J has just started at a new nursery, one that I found to be better than his last with plenty more opportunities, but he was so distressed about having to wear a new shirt. He was pulling at it and trying to get it off, I honestly thought we were going to have a hulk moment and he’d tear through the shirt. But he didn’t and I managed to calm him and show him the pictures from the prospectus of the other children wearing the same. This definitely helped him to keep it on.
So with all of that being said, I am just really hoping that any day now we will receive a letter from one of the above mentioned teams and we can get this stationery ball moving again, just so that we can get an answer. I would be forever grateful if there was anyone reading this, that has been through similar with their child, and I am completely at a loss with it all.
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