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!!!

Skylon at Niagara Falls and Glass Factory

Before the Skylon we went by the Glass Factory, it was amazing to see them make glass ornaments. I have seen this in Europe quite a bit but my kids have never seen it... I was pretty worried in the showroom as each piece was like $100 and up.... lots of pieces were $500.... Well they were beautiful and they have Cranberry Glass.

Well I was chuffed that I managed not to BREAK anything! Lol!

then we went off to the Skylon....

If you have a blue badge, you can park at the Skylon for FREE! not advertised... but there is very limited disabled parking in Niagara.. So you can park for free.

If you want to go to the Toilet in Skylon with a wheelchair... aim to go 30 mins before you want to go as you have to go to the front desk to get a person to use the elevator and take you down so you can go and then wait for the person to come back and pick you up!!!

The Skylon itself wasn't bad value...

But it wasn't very wheelchair friendly like to go on the observation deck outside you have to get down 3-4 steps, no disabled doors and is a 2-3 person job! and Oatie as you can see is SMALL!

It was nice and you got some nice vantage points....

you can save if you buy online, but you have to print out your tickets or you get stuck at the desk for 30 minutes.

When I was a kid there was a place where you could get a Barrel photo like you're going over the falls... the only place in Niagara where you could get that special effect photo was at Skylon and for $25 you could get 2 different portraits and I thought it was good value for what you got.

DO NOT go for the Legend of Niagara, part of the Skylon package.. esp if you are in a wheelchair....

We were told it was in the basement where the disabled toilets are... it was OUT SIDE THE BUILDING.... then you had to get down an escalator, 30 or so steps or use the elevator. The Elevator and the escalator were BOTH BROKEN!!!! BOTH! my husband and almost 9 year old had to take Oatie down in stages, it was a nightmare...

Then inside, it was a horrid Violent jerky cinema system, it's meant to be 4d... but Captain Eo at Disneyland California is smooth and quiet and Oatie loved it. This was like you were in a car crash!

Can you believe that there is NO WARNING TO TELL PREGNANT PEOPLE IT WASN'T SUITABLE EITHER!!! totally shocking! Do NOT GO!!! even if it's free, do NOT go to Ledgen of Niagara with a wheelchair! there is also no really wheelchair friendly seating either...

After that we went to...

Another nice Indian in Niagara Falls was the Guru, it was full of Indian people so that's always a good sign lol! (I'm Indian) and well it was very nice and there was another family with an Adult with quite severe CP. We didn't get stuck in the corner, they had this other family and us in the middle of the restaurant and they were very lovely to Oatie.

After spending $60 per attraction... we decided to find some FREE attractions...the glass factory was free... we decided to take the kids to the St.Catherine's museum... it's how the big boats get around Niagara falls... and is Canal Lock System... there are loads in England... but the first locks I've seen in Canada.

The museum was nice, it has relics from the past and things about the Canal, and it was free to enter and you could give a donation if you liked towards the upkeep... but the whole viewing of the locks was free too... so a great day out and it was FULLY wheelchair friendly...

There was the warm observation lounge and you could get out to the Catwalk walk way with the wheelchair from the elevator... so someone who can't walk can enjoy it just as much as those who do.

We spent 3 hours there had a picnic inside the observation lounge and the kids found it fascinating!

It was time to say bye to Niagara and head up to Toronto! More tomorrow

Niagara Falls

So the next day we went to Niagara Falls, it was out of season, and rather BRISK i'd say, but there were no queues.... quite a long walk for someone in a walker, but Oatie REFUSED to go in his wheels! The staff were all pleasant and it was all wheelchair friendly aboard the Maid of the Mist.

The last time I went on it was when I was 12/13 I think? It was my 4th Visit to the Falls as we used to visit my mums elder sister in Toronto every year or so when I was little. SO it was nice to take my kidlets on and see their faces and wonder if mine was like theirs in total AWE of something so natural and raw power and beauty.

Oatie on the Maid of the Mist... other people wanted to borrow it as we were all not very steady on our feet! He stood up for the entire thing.

The only thing is that if you're in a wheelchair it would be very hard to get up to the top deck to see anything... so you'd have to be lifted up the stairs... Luckily Oatie is not that big.... yet!

Another boat company is taking on the falls boat ride next year, i wonder if it will be more wheelchair accessible?

We have a photo of him smiling but I think it's on my husbands phone... I couldn't see when I took this photo from all the mist!

After the Boat Ride...

We then went to Boston Pizza... DO NOT GO! unless you want to spend 2 hours in there and be charged $3.15 for one soda! The service was rubbish... the only good thing was that the kids meals were good value... but $20 for a spag bol....??? hmmm! Both the Chinese and the Indian in the heart of Niagara were better value and more filling than the Boston Pizza and the service at the other two was brilliant! After Boston Pizza we headed for the Skylon...

Tomorrow I will tell you about the Skylon!!!

Montreal... watch out Oatie's about!

I have just lost my post for this, and I really quite liked it:(

I don't know if take 2 will be as good! lol!

We had a great trip to Montreal and the next day we went for our ABR training. We had a fantastic training as usual with Fehim and Marianna. They both are totally outstanding, they are so clear and explain things so nicely... I don't know if it's the same for the other ABR families but the 3 hours just fly by! There is a group synergy in the room, each person with their unique CP but we're all working towards the same goals and a lovely camaraderie!

Oatie on his Bench watching his cartoons.

It was the first time Oatie doubled up on his sessions, I will update the comparison photos but that will be a blog post for another day! As it is I think I'll have to break our trip into different posts so many photos

Oatie in McDonalds, we gave in to the kids lol! Oatie says that's where Frutopia comes from!

At our Favourite Indian in Montreal, well in Canada ! Moghel Tandoori the details in the restaurant section of my blog! As usual fantastic experience, wheelchair diners so welcome and brilliant service the owners nephew is special needs so he just loves Oatie when we come in. He was super chuffed we came back!

We also met up with Oatie's LOVELY preschool aide who was wonderful as always!

Fuel for what was our 9.5 hour journey from Montreal to Niagara Falls... I think it's meant to take 6... but we had a few pit stops along the way and Tim Hortons was one of them! Oatie usually gets 1-2 timbits... so he's never seen a donut before! He thought they were one HUGE timbit and was so excited!

We made it to Niagara, this is at a Chinese in Niagara Falls, it's called the Lotus Garden I think super handicapped friendly, great value and sweet service!

Tomorrow I'll post about Niagara Falls!

WOW what a Week! but a fantastic week, LOTS has happened in the past week.

Well Since last Tuesday, my Eldest passed another two figure skating tests that he's been working towards for a while. He didn't just pass them he really passed them. So that was great!

Then on Saturday, we went to one of the skating coaches wedding. It was on ice and it was BEAUTIFUL. All the kids performed from Jnr prep up to Senior a whole club number and then they did individual group numbers on the skating level. Jnrs, Int and Seniors. The kids did their coach proud.

Then the Groom who plays hockey at a high level came out with his ushers... and the and waited at the ice alter... The bride came gliding out escorted by her parents one on each side which did choke me as you could have imagined them holding her up once on skates and now she teaches skating for her living! She has a beautiful ivory ice skating wedding dress on.

Oatie, wanted hair like his big brother, so it got spiked and Oatie looked so cool.

My husband took photos from a different angle and I videoed from the side view, everyone was at the short side of the rink... but I felt that sometime an alternative view is nice as you see what everyone else doesn't see. Like I got all the kids going in and out and when they all came back on the ice for a group photo hugging their coach it was so lovely!

Oatie has some news! well lots of news.... about 10 days ago, he trialled a walker. It's a reverse one so he's not stooping, he actually keeps him in fairly good posture. We've borrowed it from the Neuro clinic so we could bring it to ABR HQ for their opinion of it.

We asked our fellow ABR families what they have done in a similar situation. Oatie, about to go to Kindergarten in the fall... and now he's started potty training and it's a school of 700 I've been told by the principle! just in elementary... So we're just going to let him use it for that mainly.

His physique has been improving but he started to become agoraphobic and less social been in a chair the whole time. So in a week his maturity has tripled... he's been asking what more things are and even walked out in rain, wind and snow... where as before he'd scream!

AND.....

Oatie is getting an ADAPTIVE BiKE! we went to the clinic just before we went to the Wedding and in 10 days time he will get his new bike. It's an able bodied persons bike, but adapted for him, it has bigger stable stabilisers and it has a spring loaded handlebars, which are circular so Oatie can hold on where it's comfy for him... they're moving the break to closer to Oatie. His bike has a backrest and a seatbelt and he has special peddles!

Again the bike, he chucks his outdoor phobia aside, he rode it outside the CP association on their pavement/sidewalk and LOVED it.

Oatie will be hopefully cycling in a Bike Rally for CP kids. So he's going to be collecting sponsors. It's a 1km bike ride and they have 3 hours to complete it! his siblings can join him...

AND!!! Oatie also went to his siblings school disco, he took his walker with him and bopped on the dance floor and did the YMCA and even tried the Michael Jackson Moonwalk.

AND we went to a tradeshow on Friday, to help raise money for a National Figure skater. Oatie visited the fire station booth where he became chief firefighter!

Oatie would normally HATE something like this, but because of the walker he was sociable and enjoyed it.

AND....

On Monday we flew out to Montreal for our next ABR session. This time we took the whole family. So today we had day one of our training which was brilliant as usual.

Tomorrow is our evaluation and a final session. I will post some photos of our ABR session in a separate post.

This was one of the first photos I ever posted, but now 2 years on... he couldn't sit on a plane like this 2 years ago. In fact he screamed on the plane from being in PAIN! of the plane seat.

8, 7 and 4 year old now!

Well, my baby girl turned 7 on Sunday. I can't believe she is 7 already!

The photo is of Oatie enjoying the bowling party. We'll as he can't bowl independently, on of my best friends 14 year old came as his bowling companion, she is a wonderful young lady, the type that you wish your teenage daughter to be one day to be....

She is so lovely with Oatie, he had a ball, (excuse the pun).

My eldest baked both her birthday cakes, well we were going to have 1 cake, but he insisted that she needed a chocolate and a vanilla cake... so that's what she got. his cake tasted good as people came back for seconds and thirds!

Apart from that I had a horrid fever with a cold which my daughter then Oatie got and then ME! So I'm just about over that thankfully!

Skating test day's this week... Then preparing to go to Montreal :)

Easter, Bunnies and Oatie!

Oatie Spiderman Cat - for the Easter Egg Hunt

Well the second competition went great!  My eldest had another PB skate, as did my daughter.  She still gets the raw deal, I guess, as she's skating against kids who are 2-3 years older than her.  So even though she does all the same moves, they are just not as big or as strong or as fast as theirs...  It doesn't seem to affect her, as I think she knows that the strength will come, but she already has the technique.  Not a problem, but for my daughter, she will then master the next thing that makes her skate up at the next level... and then... she'll be 2-3 years younger than them all over again!  We reckon that there will be a cross over of her age/size not being an issue.

Carnival dress rehearsal was good, my son wore his psychedelic pink shirt, the theme is from the 60's... he really didn't want to wear it, but about 20 dads in the stands all said he looked really 'cool' in it and I guess he did because HE CAN SKATE!  like if he was a beginner, I might have protested.. but because he skates like a Matador he can carry it off.  Oatie, WANTS the top, and has decided that it will be HIS skating top... now that Oatie wants my eldest doesn't want to part with it after Carnival... and I was like you DIDN'T want it... and explained how this year Oatie isn't in the carnival.... that it's really important to have something of your skating that he can wear.  So Next Saturday at precisely 16:45 mountain time... you will know that the pink shirt is being handed from brother to brother!!!  My daughter loves her psychedelic shirt, she wants to wear it to school in the summer and now claims that she needs to accessorise for it!  Yep you guessed it, she will be 7! 7! 7! 7! 7! next  Sunday.

The Easter Bunny did visit, but the hunt was a clued egg hunt and that lasted 2 hours so the kids were shattered by the end.. I did confess to having a nap on the couch!  (after a cup of tea and some chocolate)!

My eldest being 9 in May, just sounds alien to me....so not dealt with that.... but my baby girl being 7, just makes me feel like my baby has become a young lady, not a little girl any more....

Got a Bit warm so de-masked

I still remember when I was at home, and my husband whizzed my eldest off to nursery, it was an all day nursery and I told him to hurry because I though our daughter was going to be with us by lunch :) and well... that was it my friend was texting me for a cup of tea at noon at 9.30am... and I texted her back, said maybe later, as I was having a baby, she was like what.... what do you mean? Well she knew but she couldn't believe I was texting at the same time!!! (well it was a good distraction from the contractions!!) and at 9.50am my little girl was born in her sac!  That evening we went out for a starbucks!  Sad I know, but I really wanted a huge Caffinated something! and a pastry!

Saturday is Carnival day, Sunday is my daughters birthday and next week is 'Test Day' well it a series of days rol!  They've been practising hard but it all depends if it's good on the day!

Oatie putting on some 3d glasses to make us laugh!

Spring is finally HERE! with some Snow of course!!!

Well what a week! I can't believe it's gone by so fast! Well Oatie had his last skating lesson of the season... we are quite lucky that 1 rink offers Summer public ice, so we can still take Oatie out!

Well this weekend was nicely paced but full of action! On Friday we travelled to one of the biggest fun competitions of the year. My older two LOVE it, they see all their skating friends, from near and far, ones who they competed with last year and instantly they are laughing and chatting away like they saw each other each week... The boys are my favourite they link their DS.... put their skates on, compete against each other and straight after they are linking their DS....

The girls are not unfriendly but it doesn't have the same camaraderie that they boys have... the boys are a rare specie...

My elder son, who lots of the girls think he's CUTE, has a look a like, who competes against him, the other kids nick name is the same as mine's actual name and they look the same, 2 months apart in age... they both have a similar skating style and they even have the same hair... each year we think it's hilarious! a few times the judges have got them mixed up! Mine wears his glasses on the ice.... So anyway each year, in the stands lots of girls come to watch these cute 8-9 year old boys skate...

My daughter is still one of the youngest in her category... so in some ways she has a harder time, and there are more of them...

We were very proud of them, Oatie particularly so... as they both had personal best skates, my eldest walked away with a Silver for his Freeskate (to music) and a gold to his elements, where he was having a battle with physics and his glasses... he refuses to wear a glasses strap, but I'm trying to wait for contacts till he's 10 and not sticking MUD in his eye.... but he's spinning SO fast now that during the second event he was pushing his glasses back on mid spin!

My daughter managed to do some combos' that she was having trouble with, well she changed skates 2 weeks ago and she had a great skate.... and in her elements, she got a bronze which was brilliant, she's still 6 and there were 10 year olds she was skating against.

This time I attempted a Curly ponytail,... which half fell out when i took this photo as i didn't hairspray it... (I don't like solvents or sprays especially since the whole throat lump thing) and she was on the ice at 8:30 and only had to last 30 minutes max so I didn't care if it fell out after! She wore her princess dress and the curls looked all princessey and when she skated they bounced and she looked absolutely stunning!

Oatie wants to compete one day too, so that will be an interesting conversation to have with Skate Canada.... I have re looked into it... intellectually disabled people CAN skate and physically restricted people CAN'T skate! and the Special Olympics at present WON'T support physically restricted people which I think is discriminatory... just my view... but how can they say that when the CADS the disabled ski association of Canada will support both... and even the PARAolympics will support intellectually disabled people where as you would think PARA to be strictly physically but they say no... anyone who wants to do a sport they are happy. They just don't have ANY handicapped skaters at present...

Other than that, we were in and out of the competition within 24 hours, we found a restaurant that we loved last year so we made reservations and we enjoyed a lovely meal together on Friday. By noon on Saturday we were out of there. My Daughters cat is an April fool.... and turned 6 yesterday so naturally with him being a chocolate point monster... he had to have a birthday party, with a meal that he would like to have a part off, and the kids made chocolate brownies for pudding (no the cat wasn't allowed that part) there were balloons and presents and I THinK the cat had a good time... well he didn't run off... and did sit there:)

I think Oatie enjoyed the balloons more than fizzbit, this is a 1m+ balloon!