My Husband, My Hero

I think it’s time for another post about Hubby. There are so many reasons why. I decided to do it now because of what happened with K’s respite last week. But also to reassure him that cracking my rib was not his fault.
Yes, he did, and it’s a funny story. Let’s have a flashback first. Hubby and I have known each other since we were 14. This year we celebrate our 20th wedding anniversary. In all those years my number one complaint was that he is never romantic. Ok, I can’t say never. He has his moments, as few and far between they are. So he was sitting in the living room and as I walked by he grabbed me and gave me a hug. Very nice. Then he tried to lift me up. I guess the position was wrong because all we heard was a “pop” and the pain shot through my side like a bullet. An X-Ray confirmed it was fractured. There is nothing you can do for a fractured rib except rest, take muscle relaxers, and a pain pill if you need it. Trust me, I need it.
Hubby feels so bad. And the last thing I want is to cause him more stress! (See “When employers don’t understand” and “Losing respite”) I try to help but sometimes the pain just gets too much. I try not to let it show but he knows. I went for a nap and when I woke up the entire main floor was spotless! He and B had done it. It was wonderful.
I know how much stress Hubby is under. And yet he still shows how strong he is day after day. Not just physically, but mentally as well! His patience with K is unbelievable! But he is always on 24/7 alert! No matter where K is or what he is doing, if they need help, they call Hubby. He never gets respite, even when K was at respite. I think when K goes to permanent care it will be harder on Hubby than on me. Especially the transition period where we can’t see him for 3 months.
And to top it all off he is dealing with a wife on stress leave and in therapy, AND who is now out of commission for a couple of weeks. He doesn’t want me to worry, but I can’t help it. I see the crap he is dealing with at work is affecting him so much, but there is nothing I can do. I feel so helpless. I love him so much, and he has been there for me “in sickness and in health”, but I don’t know how to be there for him. I hope and pray that the issues with his work get settled soon. I hope and pray we find a happy and safe environment for K soon. I hope and pray I get better soon and get back to work. But soon is never soon enough sometimes.
I love you baby. Always and Forever.

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What is going on???

In my previous post I mentioned that K lost his respite due to his behaviour and hurting staff. On Friday there was a note in his communication book from school that said “K was borderline violent, knocking over chairs repeatedly. Very stubborn about moving. He would smile when told sternly to stop this behaviour. Any suggestions are welcome.” Yes, you got it. The SCHOOL is now having trouble with him. The one place where he always seemed to behave himself, and listened and followed instructions! On one hand I am happy that everyone is finally seeing what he is like with me all the time but on the other I wonder where this bad behaviour is coming from. He doesn’t seem frustrated with anything. It seems as though he’s doing all this just to be bad. And when he is spoken to sternly, he just smiles and laughs and continues. I’m at my wits end now! If respite can’t handle him at all, and the school is at a loss with what to do, and even his Behavioural Therapist is stumped, what am I supposed to do?
I am waiting to have an assessment done through developmental services. I am positive that when they see K, and hear our story, we will be able to find a more suitable place for him. I was told it was no longer a “waiting list” but a “needs list”. That is good news for us, because his needs seem to be getting more and more and my services, especially when he turns 18 next month, are getting less and less. Hubby and I were talking and we agreed that if he has to go somewhere outside the city we will move closer to wherever that is. The only other place we tried so far was 45 mins away. I know they try to find a place close to home, but if a good place that meets his needs is 2 hours away, I can’t turn it down. We are already planning to move in 10 years, but if we have to move that date up, we will.
I know some of my readers have children in respite or even in permanent care. What was the process like for you? How far away do they have to go? For those who still have small children, check all the services in your area. Be prepared beforehand. I wish I had so I would have had a back-up plan. I wouldn’t be rushing around trying to get things going for when he turns 18. Two weeks until then. Unbelievable.

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Losing respite

K has been going to respite for almost 10 years. It is always a very welcome and needed break for the family. It gives us a chance to spend more time with B, and it’s also the only time Hubby and I can make plans for a date night. The place he goes to has all the apartments on the second floor, so they have an elevator. K has a fascination with elevators. Every time we get in one he tries to push all the buttons and will fight with whoever is in the way to get them. Before we had the wheelchair he would sit on the floor of the elevator and not move. When K “plants” himself it is almost impossible to move him. He will fight and squirm and scratch until he is back on the floor again. There have been times where he had to be dragged off. When we got a wheelchair he would still try and he would rock the chair back and forth trying to get out of it to get to the buttons. The staff there said it was a safety issue, they had trouble every day getting him on and off the bus to school and his weekly visits were cancelled. We were only given a weekend a month.
Our OT suggested we get a customized chair for K, with straps to stop him from getting out of it and safety wheels to prevent him from rocking it. We went to the supervisor and showed her the new chair and our weekly visits were reinstated with one condition. Hubby had to be there in the morning and after school to help the staff get him on and off the bus. That lasted about 2 visits then Hubby was picking him up and driving K to school and then picking him up from school and dropping him off. No staff help at all.
K was supposed to be at respite this week until Sunday. On Thursday we got a call at dinner time saying K had escaped the room and was in the elevator. Hubby had to drive down there and get him off. Later that evening we got another call. K had found a way to the stairs and was trying to get out again. Again, Hubby had to go down there. This time K fought him, which he never does, but Hubby got him back to the apartment and K went into his room.
Yesterday I got a call from the respite supervisor saying that 2 of the staff that were on with K were seeking medical attention. She said that because he has found a way to escape the premises and he is injuring staff, his respite is suspended. She told me to go through developmental services and see if they could find a more suitable place. For K’s needs he needs 1:1 supervision. The waiting list for that is years long. Even putting him on a crisis list doesn’t guarantee he will find anywhere sooner. With him being harder and harder to handle at home, the thought of having no respite at all worries me. Will I be able to cope? Will B get the attention he needs from me if I am too exhausted to do anything with him? Will I have to start asking S to watch him when he only gets one day off just so Hubby and I can go out? Hubby and I were planning on going away this summer for our 20th anniversary while K was there, but now we can’t do that either.
I am so angry but my hands are tied. The decision has been made. All I can do now is wait.

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When employers don’t understand

As I mentioned in a previous blog, K had to have two eye surgeries last year. He had developed Keratoconus, an eye disorder that causes the cornea to bulge out like a cone and can lead to blindness. He had to have a corneal transplant in both eyes. It was a very hard time for hubby and I. I was already off work due to stress leave and now we had to deal with the chance of our son with Down Syndrome, Autism, and Epilepsy losing his eyesight as well.
He had the first surgery in Jan 2011. We chose to do the healthier eye first, as the other would require a full transplant and we wanted to make sure he would tolerate everything well. This one was only a partial transplant. K got through the surgery no problem but was going to require someone with him 24/7 to make sure he didn’t touch his eye. Hubby had to take some time off work because I can’t handle K myself. After the surgery we had to make weekly trips to the hospital for checkups. We tried to make the appointments for when hubby was finished work but that wasn’t always possible. Unfortunately K would not keep the eye guard on and he wouldn’t stop rubbing his eye so the stitches came out. Back into surgery he went and this time the eye surgeon sewed the whole eye shut. That made it extremely difficult because now K couldn’t see at all out of his good eye, and his bad eye was legally blind. Only 10% vision. K had to stay like that for a month. Hubby again had to take some time off. He applied for special leave through his work. In the meantime they were using his vacation to cover his wages, so we wouldn’t lose any pay. With me already off on disability, our income had already decreased.
Finally, after 6 months, K’s eye was perfectly healed and the stitches all came out! The change in him was incredible! He walked faster. He would see something across the room and go get it. He didn’t sit right in front of the TV to watch it. I couldn’t wait for the other eye to be done!
Hubby and I planned some time away, just the two of us at the end of Aug to recharge and relax after going through all that stress. Hubby was on his pre-approved vacation, so he thought, until he got a call from his work saying he had no vacation time left so if he stayed off he wouldn’t get paid. He asked if he could borrow some time from next year and was told he had already used that too. So much for our vacation.
The other eye was done in Sept. After learning the lesson with the first eye, the dr sewed it shut right off the bat. We still had the weekly trips to the hospital and someone had to be with him 24/7, but he left this eye alone, thank goodness. This eye healed very well. We thought we would have no more problems. We were wrong.
Hubby noticed hours were being taken off his cheque. Time that he had previously been paid for was being taken back. Sometimes he wouldn’t get a paycheque at all! He went to his supervisor who told him his special leave request had been denied. His work, instead of taking off 10% per pay until any overpayment was paid back, was taking off full shifts, putting it in the system as unpaid leave. Hubby put in a grievance to his union. After some time he was offered 6 shifts back. Hubby refused.
Right before Christmas, they took more time off, leaving us with no money for the holidays. Hubby called the VP, who he had met previously and knew his story. He had the company give us $1500 to help us through the holidays. We thought that was wonderful, until the first pay in Jan when the company took it back. That took his whole pay. Again. Bills were beginning to pile up, our mortgage was late a few times. It wasn’t helping my stress, and certainly wasn’t helping Hubby’s either. He continued to put in grievance after grievance but it seemed no one was listening.
Then he fell at work and hurt his knee. Knowing if he went off sick he wouldn’t get paid, he accepted modified duties. When his knee wasn’t getting better the doctor told him to stay off. Hubby applied for WSIB. He was denied. Another 2 weeks taken off his cheque.
His calls to the VP went unanswered. His meeting with the arbitrator was put off due to “lack of information” on the company’s part. His union told him his grievance has gone national. What that seems to mean is they can put him off indefinitely. Sure seems that way. Hubby even called his company’s EAP (employee assistance program), but they couldn’t help him either.
We are one more postponed meeting away from going to the media with our story. I thought I would bring it here first. What good is Special Leave when you can’t have it when you really, really need it? What do you do when it seems your employer doesn’t care? His job used to be Hubby’s escape from the stress at home. He enjoys his job. Now they are causing him more stress than K ever could. Comments and suggestions are welcome and needed.

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World Down Syndrome Day

March 21 is World Down Syndrome Day. This year marks the first year it is recognized by the UN. The date is in reference to the 21st chromosome, which in the case of people with Down Syndrome there are 3 instead of the usual 2. (3/21)
I wanted to get the word out this year because this is the first year I have been actively Tweeting and I see the power of social networking. One post can set off a wildfire, spreading faster then you can hit refresh! Why does it always have to be the negative stuff that spreads? Why don’t we spread some positive and share our stories? I am sure all of us at one point have had an opportunity to be around a person with Down Syndrome. With all the negative press about pre-natal screening and an outrageous court case for a “wrongful birth” I wanted to get some positive concepts of DS out there!
I have blogged about K’s Autism more than his Down Syndrome because those are the traits that come through the most. It is difficult to compare K to other people with Downs because of his Autism and Developmental Delay. I don’t know how K’s future will be. I know he won’t be able to live independently or in a group home like most adults with DS. I know he won’t be able to have a job. But that is K.
When I was in school there was a class we would call the “Metro kids”. There were kids with DS and ASD and other disabilities. Some of the other kids would make fun of them, calling them “retarded”. I always felt so horrible watching them get teased and I would make sure I said Hi and smiled. When I was a teen I worked at McDonalds and one of my co-workers had DS. It was his job to keep the restaurant clean. He took his job very seriously and did an amazing job. He would always say Hi to everyone and if we were in the lunchroom together he would tell me about his favourite shows and movies. He had a great sense of humour.
K has an amazing sense of humour for a non-verbal! His laugh is so contagious! He loves to be held and cuddled and tickled. Even though he will be 18 next month and weighs 200 lbs, he still loves to crawl into bed with Mom and Dad on Sunday mornings.
He can make choices from a picture board and I hope one day to get him a better communication device where I can actually have a conversation with him. Sometimes I can’t help but wonder what goes on in his head.
Please share your story. If not, forward this post to someone who might. Let’s show the world what Down Syndrome is really all about. The person. Not the disability.

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K’s other hidden disability

K has Epilepsy. He was diagnosed with that around the same time he was diagnosed with Autism. His first seizure happened when he was 14. I will never forget it. We were sitting on the couch watching TV together and I was tickling him. All of a sudden he started choking. I pounded his back and yelled for hubby to come. He laid K down to see if he could clear his airway because K’s lips were blue and his tongue was purple and swollen. He started CPR while I called 911. K was convulsing and gasping for air. I felt so helpless. After what seemed like an eternity the convulsions eased and K started breathing normally again. The ambulance arrived and we went to the hospital.
The doctor there told us the convulsions could have been connected to the choking episode since he had no history of seizures. He wasn’t put on any medication. But we were told to look out for it to happen again which it did 2 weeks later. This time he was sitting on the floor playing with his toys. Then it seemed like he zoned out for a couple of minutes. He does that all the time so I didn’t take much notice but then the convulsions started. I was by myself this time but I didn’t panic. After about a minute the convulsions stopped and K fell asleep right there on the floor. I knew then that they were seizures and made an appt with a neurologist.
By the time we got the appt, K was having seizures every couple of weeks. The neurologist put him on Lamotrigine and sent him for an MRI. He was diagnosed and after a little trial and error we got him on a dose that stopped the seizures. The only time he would have one is if he missed a dose, so we made sure he was given his pills regularly.
He hasn’t had one in almost a year but yesterday he had one. He was sitting in the chair. He zoned out for awhile and then they started. If you have ever seen a seizure you know what I am talking about. K’s tongue swells right up and I have to make sure it doesn’t block his airway. I have to leave him where he is and just let the seizure pass. All I want to do is hold him. But all I can do is watch. After a min and a half they stopped and he slumped over. He always sleeps after a seizure.
I know he has been taking his meds because I give them to him myself. We don’t see the neurologist again for another 2 months, so I will just have to hope it was a one time thing. I hope he doesn’t have another one. But there is always the chance.

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I feel like such a hypocrite!

I admit it. One of my favourite comedians is Russell Peters. He’s a good old Canadian boy whose father and mother were born in India. He does satirical comedy. He makes fun of all races, creeds, religions, you name it.
I was watching one of his recent shows on DVD called Red, White and Brown. It was his usual stand-up of poking fun at his own race and laughing at the certain stereotypes of others. His audiences, surprisingly, love to laugh at themselves, because you will always see a big ethnic mix at his shows. And, I’ll admit, most of what he says is true! Especially living in Toronto where the “minorities” aren’t so minor. (Let’s just say B is one of the only Caucasian students in his school!) And I laugh my ass off!
On this certain DVD, near the end, he talks about being sent to a “special school” and at lunch time all the wheelchair kids would sit together and all the blind kids (“how did the blind kids find each other?”) And “the autistic kids would sit in the corner for 45 mins rocking back and forth”. No, I didn’t laugh at that point but I did laugh at his next.
We are trying so hard to raise awareness for autism and one of the most recent thoughts is how to get rid of the R word. Did you know that there is a sign for retard in the American Sign Language dictionary? Don’t believe me, go look it up yourself! It even shows you how to sign it! So Russell Peters points this out by saying “how much worse can we be to them when disabled people are making fun of other disabled people?” I laughed! It’s true! He shows how easy it is to get lost in stereotypes and no matter how much of the contrary you hear you have your own prejudices deep, deep down. Does that make me a hypocrite?
We were all brought up believing certain things about certain types of people. When those of us who had challenges thrown at us that involved rethinking some of these prejudices, we had no choice but to. I’m not only talking about having children with special needs, but I’m also talking about those with mental illnesses, or physical illnesses like cancer. Anything that made us need to rethink what we had been brought up to believe. That some kids are “retarded”, some people are “crazy”, “cancer kills you”.
Russell Peters takes those stereotypes and shows just how utterly ridiculous they are by having us all laugh about it. If you are not familiar with him, check him out on YouTube. And don’t be ashamed to laugh. His fan base is huge so all of them, including myself, have all learned to laugh at ourselves while laughing at other people. How can laughing so hard you cry be a bad thing? When he just happens to be making fun of something a little too close to home, THAT makes me feel like a hypocrite.

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