Oh boy, I am always apologizing for taking unintended breaks from my blog! I am sorry… I will honestly try to be better. I know some family peek in once in a while and enjoy the notes and pictures. This time of year seems to be unfavourable in terms of health. It was about this time last year that I had the blood clot in my leg and spent oodles of time in pain and getting it treated. Now, this year I ended up with some kind of lung infection. I just woke up on a Saturday morning and my lungs were rattling when I breathed. It got worse rather quickly, so off I went for some medicine and puffers. On top of that my friendly family doctor reminded me that I should be taking lots of iron as I’m anemic. It is kinda tough to want to do anything when you are dragging everything!! I’m on 3 iron pills a day for a minimum of 2 months, at which time more blood will be drawn to check on my levels. It sure would be wonderful to have a little leftover energy….
On top of that I’ve had to sort out our summer plans. Mathew can stay by himself for some periods of time but he gets anxious and lonely. Then the phone calls to me start. They get longer and longer and he carries on, sometimes in tears and other times in anger. It’s the last thing I want at work ~ a homelife crisis on the phone. Repeatedly. Several times a day. So, up until this year he has attended summer activities. Last year it was summer camp through the YMCA even though he was 16. They bent the rules because he is developmentally delayed. It worked ok for a few weeks until the kids discovered he wasn’t a leader. Then the little thugs started hitting him and teasing him to the point he left the programme. Nice to know a bunch of 9 and 10 year olds still have the ability to reduce my kid to tears.
This summer is a different story. There is a gap in “people-care” opportunities. Mathew, at 17, is too old for all the youth programmes. He is too young to apply for any adult programmes out there. He is one who has fallen through the cracks. I was able to get him into one camp this summer and that was it. He will also be allowed to join the Autism Centre’s one week afternoon camp for 11-15 year olds because the woman who runs the centre is very familiar with Mathew. So, nails chewed to the quick, plenty of calls later, I just didn’t know what to do. How would we get through this summer?
There was one option that I ended up using. It is called Leave with Income Averaging. It is similar to the teachers’ situation for the summer months. They are paid for 9 months’ work however it is averaged over 12 months so they are in receipt of pay for an entire year. In my case, I’ve taken 5 weeks of leave without pay but my employer is averaging it out over 12 months, so I get paid for the full 52 weeks. I think it will mean about $150 less per pay cheque. I so did not want to do this. I just started working full time 1-1/2 years ago and I’m already paying back the time I was waiting for a job when I moved to New Brunswick from Alberta. In Alberta I worked fulltime hours for the last year however it was to the telework programme and that meant I worked all hours of the day and night to make up my time. When I started working for the government again here, in New Brunswick, it was the first time in years I worked regular full-time hours.
It didn’t take long before my life was affected again by Mathew’s disability. It is hard not to feel a little bitter; John can’t take any time off and he’s the one who really would love the time off. It always seems like it is me who bears the weight of whatever changes/adaptions happen to ensure our lives run somewhat smoothly. I’m working hard at adjusting to the time off since it is a done deal. I will probably take quite well to sleeping in…. it won’t exactly be relaxing though, since Mathew needs structure and entertainment every.single.day. At this point that means his father and I.
His one friend has entered the restless teen years and has grown away from him. We knew it was going to happen but it is still rough when it does. His student-friend graduated from high school a few weeks ago and also got himself a girlfriend. So he too, is out of the picture.
Next summer things should be different because Mathew will be 18 and thus will be eligible for adult programmes. We are starting in the fall to see about getting a disability certificate issued, legal guardianship proceedings….basically, all the change-to-adult-shit that comes when a child turns “adult” in the eyes of the law. That though is for another day.
The other place I have been is away with Mathew. We had our holidays already. He and I went to Niagara Falls in Ontario for a week, along with another week to drive there and back. We had a wonderful time although I missed the other half of my family. Last year’s vacation was so stressful that I swore never to do a family vacation together again. What is the point if you come back worse off than when you left? You know National Lampoon’s vacation movies? Ours were similar and I was tired of it. So I decided to break vacations into one parent-one child travels. That way the parent only has to focus on one person (well, the kid of course!). Given Mathew’s unique anxieties and disabilities we knew he wouldn’t be up to a European vacation. My husband grew up in Northern Ireland and we have always talked about visiting there. Our daughter expressed an interest in seeing where her Dad grew up and it grew from that, to the two of them going there. So with that destination picked, where would Mathew and I go?
It turned out to be Niagara Falls, Ontario! We did the whole tourist thing and took oodles of pictures. Let me give you an overview here and then the next posts will show you what we did.
And oh ~ by the way, yes I know you noticed I’m using our names finally. Although I’m not keen on my family’s names being out there, it wouldn’t take much for anyone to discover what they are. So why bother with the son, daughter, etc, etc? I might as well just use their names. In case you hadn’t guessed what my name is…. it’s Patricia! Hence the title of the blog.
Mathew and I drove from Saint John, NB into the States. We drove down to the Boston area and then across the I-90 via Albany, to Buffalo, NY. We crossed the Rainbow Bridge and went back into Canada right at Niagara Falls. We drove back the same way although we stopped for the nights at different hotels. There aren’t any pictures until our first day in Niagara Falls because I never checked that the memory card was still in my camera… *sigh*….
Here is a preview for you (and thank you for popping back to check my blog and sorry if you’ve missed me…!)