Our journey with sensory processing disorder

Sensory Processing Disorder|HarassedMomI often get asked what exactly is wrong with Kiara. It is not an easy question to answer and I had to try and have a discussion with my dad about it over the holidays. No one really feels Sensory Processing Disorder is a real thing.

Despite having undergone numerous evaluations and tests, no one has ever diagnosed Kiara with anything, which is actually more frustrating. If she had ADHD, we would know what to do, we could develop a plan for dyslexia or autism but not knowing definitively what it is is not so easy to work with.

What we do know though is that she has sensory issues, she has a form of dyslexia, she has some eye issues which in turn make reading a challenge for her. Most of this we have muddled upon on our own.

Figuring out her sensory issues took many years of tantrums, lack of sleep and huge amounts of frustrations. It has been challenging parenting her and the other kids (2/4 do not have sensory issues). It is a constant struggle to get people to really understand her and that what she is feeling is not just her being naughty. This has been especially challenging when dealing with Jack’s sensory issues.Sensory Processing Disorder|HarassedMom

Despite dealing with her, I wasn’t really prepared for it when Jack displayed signs of also having Sensory Processing Disorder but I do think I have handled it better.

Kiara is now 11 and Jack is 4 and all of us have a better understanding of how to deal with them, they are both dealing with them a lot better.Sensory Processing Disorder|HarassedMom

Kiara will still only wear certain clothes. She only wears jeans if she has to  (like for dancing), do not give her any pants with a button and a zip, long sleeves with a cuff like her school shirt are a no no, she can’t wear flip flops. I don’t fight it anymore, shopping is only done when it has to be done (when there are holes in her clothes) and I accept it won’t be a quick or easy outing. Jack is also doing a lot better but he still does need his long sleeves when he is feeling very overwhelmed, even if it is hot. I don’t fight it, we compromise, he wears his uniform to school but the minute he gets home he puts his jeans on (it depends on his day, some days it is immediate, some days it takes an hour or two).Sensory Processing Disorder|HarassedMom

They can’t function on little sleep. Even at 11 if Kiara doesn’t get enough sleep she gets completely overwhelmed. She loves going on her school camp but for 2 days after she gets back she is useless. Jack copes slightly better but still doesn’t sleep through every night, on bad days he moans and cries all through the night.

Jack struggles a lot with loud noises. He gets overwhelmed very quickly if the radio is too loud or the kids in his class are too noisy, alarms freak him out. I try to manage this as much as I can and avoid places that are too loud but he is learning to cope with it. Sensory Processing Disorder|HarassedMom

As they get older it is less about how to deal with them but more about teaching them to deal with themselves in a world that doesn’t take kindly to people who colour outside the lines.

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9 Comments

  1. Jessie
    7 January, 2016 / 9:50 am

    How did you find the diagnosis? Do you need to go to a normal doctor or a phycologist?
    It sounds so much like Aiden, I went over to the site you linked and he ticks nearly all the symptoms. I have wondered for a while if he has ADHD but always think to myself it’s not quite the right fit.

    • Laura-Kim
      Author
      7 January, 2016 / 10:31 am

      Jess I would start with a play therapist and then definitely an OT. It is not an easy road but there are people who can help. I know Tracey has just had Knox tested – perhaps chat to her to see who she used because they will be in Joburg.

  2. 7 January, 2016 / 1:25 pm

    Thank you for this insightful post. I really enjoyed reading it.

  3. Ksanna
    8 January, 2016 / 10:51 am

    Thanks for that post. I have a 2y old that is having sensory issues. One way she can relax is if she touches silk/satin. Her sleepwear must be satin and she prefers, that I also put on satin so that she can touch that when she wakes up at night. Nights where horror in our house, but it got a lot better, even though I gave up on thinking that we will ever have reliable sleep through the nights. Every once in a while however, that’s quite good. She hates loud noises and will also tell us to turn down the music or TV. New things scare her and she is unable to touch certain things. I don’t force her to do anything but I still encourage her to for example try to touch a certain ball. She also had issues with different things under her feet. We let her run barefeet most of the time and with the help of her creche teachers she really made huge steps and handels lots of stuff really great. She’s also very light sensitive, so she will say that Christmas lights make her eys sore. She’s a lot more sensitive to other peoples feelings, which not everybody understands. it’s difficult to explain, because she’s overall a happy chappy child, but still there’s something different about her, and she needs that extra attention.

    • Laura-Kim
      Author
      9 January, 2016 / 5:47 am

      It can be so tough trying to get the outside world to understand! But it sounds like you guys are doing well.

  4. Jadie Jones
    8 January, 2016 / 11:50 am

    As a primary school teacher I find your post very interesting and informative. I’ve only come across this condition once in my ten years of teaching and I can understand your frustration. I like your approach of teaching them to cope and work around situations that make them uncomfortable rather than fighting to make them fit a mould

  5. deborah
    8 January, 2016 / 12:24 pm

    Glad to hear Kiera is coping better. Caitlyn still wont wear jeans and to get her to wear any pants or shorts with buttons can also be quite tiresome. She soesnt like the feel of the button on her skin so most days I end up sticking a plaster at the back of the button and that’s the only time she will wear them. Most of her clothing also doesn’t have labels in them as she says the labels irritate her and thankfully being in durbs the winter doesn’t get too cold because she hates wearing a jacket/jersey over her school shirt as she says it seems to rub on her sleeves of her school shirt which irritates her. Hopefully she learns coping methods soon

  6. 8 January, 2016 / 7:43 pm

    We are going through similar issues with Ian, he just started OT.

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