Tuesday, May 15, 2012

Hypercausis.... errrrr what? and Cerebral Palsy

Phobia's Vs stuff you didn't even know existed! Well until yesterday! I don't know about you but I really don't like labels, I live with them as I have tried to be creative in different words for handicapped or disabled... etc, but although you or your children may not live by the labels, (I Don't) you end up having to check the box when it comes out on Forms or when you're speaking to a "health professional".

So when there are multiple labels I guess for something, I tend to put that down to the "health professional" not having a clue and just labelling enough things like tags on a blog!

My own personal favourite was anything gut related was IBS. (Irritable bowel syndrome) lol!

Well my eldest had phobias of bouncy houses (bouncy castles) and trampolines and fair ground rides and people dressed up as characters... My daughter who picked and carried a black ball of wool to the checkout later that even screamed and had a panic attack at the very same ball of wool... and refused to go near it... All those things you encourage for example your kids to face. And yes you can break your leg on the bouncy castle, but it isn't likely... you'd teach them to jump near the back or middle and not the edge for eg.

Well, I felt like a huge FAILURE yesterday. Oatie has become what I thought was 'scared' of the banging of the pucks against a rink wall. We HAVE to go past this ice surface to get to our peaceful figure skating one... but we have to go past it. Oatie since he was 1 wanted to play hockey and had a collection of duff pucks some players kept giving him each week they saw him and he still has. We've heard the banging of the pucks before but I have to admit this is somewhat louder!

Since he is out in his walker, he feels more exposed, in his stroller he felt "SAFE" and that was another reason I wanted him to be in a walker as he was getting very very agoraphobic. and it was the toss up between the perfect line towards his ABR goals and him getting agoraphobia, so we decided that he wouldn't really "use" his body if he was agoraphobic nor have friends or who knows what the knock on effects would be to a 4 year old afraid of going out... so anyway he's very social in his walker a total transformation back to 'himself' again.

The problem being... that he for the past week has SCREAMED as we walked past the pucks banging,... not being able to see them coming like a taller person I thought he was developing a phobia... So I sat with him while he was so very upset hands over the ears immobilised by the banging. After 15 minutes I got him to walk on... each time I had calmed him another bang. In the end another mum asked them to stop smacking the wall for just a minute!

Well I and Oatie felt very drained after that, it was so upsetting that not matter what I did or said I couldn't give him comfort and I felt like I had let him down in a way. He was so upset that his eyes were all puppy like. Then my husband said, maybe he has hyper sensitive ears...! Oatie can hear through walls, (well i can too) so I never really thought much of it. The we looked at each place he would have a mild panic attack and it was all SOUND related! The Wind... the Train...

SO last night I googled it just to see if there was any correlation at all...and voila! OMG there is heaps and heaps, lots of diplegics with super hearing too/Hyperacusis. Well it can affect ANY CP kid, not all... Accounts from adults, teens all debilitated by sudden loud noises and often WALK AROUND WITH THEIR HANDS ON THEIR EARS! Well now he's in his walker he can't walk and have his hands on his ears.

The term is Hyperacusis, and it can affect anyone anyway, but particularly people with Autism, low birth weight, CP and other types of brain damage.

Well I never knew. and I woke up in the middle of the night and cried as there I was trying to get Oatie to calm with the sound (treating like it was phobia related) or Irrational 3/4 year old behaviour... and whilst it must have been like torture to him. I just felt SO bad, again as I had really really let him down. I NEVER knew that CP kids hearing could be affected too. Well I did find some non electrical ear defenders of such... online at 3am they look like headphones... and they can take out 105db. Hopefully they arrive soon, but on Wednesday I'll have my hands over his ears for him.... for sure!!!


  1. Not to worry, Mel, this too shall pass! Adam played hockey from when he was 5 till his accident when he was 12. We spent 12 months a year in rinks and to this day I hate the sound of some smart ass hitting the boards with a slap shot. I understand...
    As for check boxes...I check all of them; means more services and supports...a box is only a box after all? Best wishes from the screwy states...

  2. Dear Phil, Ahh thank you. I did want to take the guy aside and show him how to get the puck in the net...and even though I only ever played Field hockey, I don't understand how someone could MISS that much! there was only 2 of them on the ice and it sounded like an 2 entire teams having goal practice!

    Unfortunately where we are, even with the box checked... I'm having to ask, persuade for some handles for the toilet so Oatie can feel safe sitting on it...

    They have a aids to daily living grant which covers virtually nothing! it wouldn't help someone who was handicapped, unable to work to live life daily... or have a vague resemblance to independent living! Ticking the boxes doesn't seem to work here. Maybe because it's too cold! lol!


Related Posts Plugin for WordPress, Blogger...