Wow, its amazing how quickly time flies... that sounds ridiculous but it is true. We had a wonderful Christmas and Emma was very happy with her new camera. I think Brian is a little jealous but we agreed to get her a really nice one and that's what we did. She seems to have an instinct for framing good pix. Will be interesting to see what she can do with this bad boy. Ronnie also got lots of stuff, primary clothes and stuffies. I feel like she got cheated on the quality of presents but, hey, she is getting a completely new bathroom...
And the vegie tourtiere went off really well as Christmas. My brother even took a slice and didn't barf. He can be a little standoffish when you play with traditional foods.
As for me I've spent the last week at home with the girls watching all the movies and DVDs we received and just relaxing. Although it has been fun I think I'm a little over-relaxed... having a hard time falling asleep these days. Its not stress related but just not overly tired I guess. Weird - I'm used to barely being awake at 9:30 to getting up a midnight and reading for 30 minutes before trying to go back to sleep.
That's it I guess. Not too much drama to relate. Oh wait, I forgot: Mya our cute little beagle-cocker spaniel mix had a seizure yesterday. Its the first one in like 6 months we think and she seems to be completely recovered thank god. Now I need to figure out how to use a tajine (sp?) to cook our new years meal.
'til next year.
Friday, December 31, 2010
Friday, December 24, 2010
Merry Christmas Eve
So its Christmas Eve and I've spent the morning baking tourtieres (both meat and vege versions) and enjoying my 12 year old daughter. Sometimes i don't give her enough credit, but she really is a good kid. She has a wonderful sense of humour and when she lets the crazy girl out, she can be a real hoot.
And hopefully tomorrow she can get past the fact that she doesn't have a ton of presents but what she does have are good ones (a.k.a expensive ones).
The complicité the girls are building together is really nice and I hope it will continue past December 26th. I used complicité, but there is no real English translation for it; the closest would be connection but that's not quite right either. Oh well,you get the idea.
My best wishes to everyone out there for a wonderful holiday season and may the joy and peace be at your fingertips the rest of the year as well.
'til next time.
And hopefully tomorrow she can get past the fact that she doesn't have a ton of presents but what she does have are good ones (a.k.a expensive ones).
The complicité the girls are building together is really nice and I hope it will continue past December 26th. I used complicité, but there is no real English translation for it; the closest would be connection but that's not quite right either. Oh well,you get the idea.
My best wishes to everyone out there for a wonderful holiday season and may the joy and peace be at your fingertips the rest of the year as well.
'til next time.
Wednesday, December 22, 2010
All it takes is a little perspective
So yesterday I decided to stop whinning about our upcoming renovations and I'm glad I did. When I checked out facebook later on, there was a post about a little girl with Angelman's who was in a coma due to constant seizures. Wrote a little "our thoughts are with the familty..." and kind of forgot about it.
Well just a few minutes ago, I was back on facebook and there was a new note: Elayna, 8 years old, has passed away.
God bless her, her family and the extended community that took Elayna into their hearts and mourn for her passing. She will be missed.
Well just a few minutes ago, I was back on facebook and there was a new note: Elayna, 8 years old, has passed away.
God bless her, her family and the extended community that took Elayna into their hearts and mourn for her passing. She will be missed.
Tuesday, December 21, 2010
Mental altitude
So, I've whining on and on about this home adaptation project and I'm now officially sick of myself. I hate being negative and I've been so stressed out with this whole process especially in the last few weeks that I'm having a hard time seing past it.
But I will have fun with the girls and get to spend alot of time with them while they destroy my bathroom.
'til next time.
I've decided that since I can't control the construction or the designer, I might as well get used it and let go. The only thing I can control is my reaction and I'm done giving myself headaches about it.
So here is a try at a positive spin: I am fairly positive it will be a nightmare
But I will have fun with the girls and get to spend alot of time with them while they destroy my bathroom.
'til next time.
Sunday, December 19, 2010
A snotty situation
Kids, they are so generous... Ronnie has been snotty for about a week now and Emma is somewhat congested as well. I woke up this morning to Barry White sharing my bed. Okay, not really Barry White but Brian's voice certainly sounded like this deep bass drum.
Overall the girls seem to be feeling okay (and thankfully I'm still healthy). As we approach the Christmas holidays I think everyone is tired and just ripe for any little bug that comes flying by.
As soon as Brian comes home I will be baking some cookies so hopefully that will bring a smile to everyones faces.
That's it. 'til next time.
Overall the girls seem to be feeling okay (and thankfully I'm still healthy). As we approach the Christmas holidays I think everyone is tired and just ripe for any little bug that comes flying by.
As soon as Brian comes home I will be baking some cookies so hopefully that will bring a smile to everyones faces.
That's it. 'til next time.
Thursday, December 16, 2010
Adaptations part 2
I can't believe it has been a week since I've posted - and here I had made a commitment to try to do it daily... maybe I need to be committed? It's a possibility. Anyhooo...
So, by the time I return to work from the Christmas holiday, we should full into our home adaption/construction work. How do I think it will go? I think it will be a nightmare.
We’ve been in “negotiations” for this for the last 5 years or so and we are still having problems. For example, we've just realized that the designer had removed the vanity and medicine cabinet in our bathroom and we've purchased new and smaller ones to replace them. However, our current lighting is attached to the medicine cabinet and that is NOT being replaced. Why? The designer apparently forgot to include it and since we've blown the 16K budget, we have to pay for the light and the installation ourselves. Or we can choose to showing in the dark. It's not that its expensive; we actually found a light for under $60 that we liked (that's what made us think about the light and ask what kind it was going to be), it is the principle. This is her job; she should do it properly or take responsbility when she fucks up. The designer's reaction? "oh, I guess I forgot".
As a parent of a child with a disability, you end up asking for help from alot of different people. Keeping your dignity while you are doing that is not always easy. It was certainly not easy to admit that we could not afford to pay for the adaptation ourselves and that we could not afford to pay the 60K estimate that was given with the original proposal. When you feel like you are being condescended to because you ask a question, it is not only frustrating but extremely humiliating.
On top of it, I tried to contact the various supervising units and they all abdicate responsibility – and refer us back to her. Then Brian and I were arguing about how to respond to her. I just want the woman to admit that she made a mistake and take responsibility for it – and he just wants to bury it and get the work done. AARGHH
So, anyway, we hope to get a functional bathroom in which not only Brian but I can give Ronnie a bath on a regular schedule without hurting our backs. I'll let you know how it goes.
'til next time.
So, by the time I return to work from the Christmas holiday, we should full into our home adaption/construction work. How do I think it will go? I think it will be a nightmare.
We’ve been in “negotiations” for this for the last 5 years or so and we are still having problems. For example, we've just realized that the designer had removed the vanity and medicine cabinet in our bathroom and we've purchased new and smaller ones to replace them. However, our current lighting is attached to the medicine cabinet and that is NOT being replaced. Why? The designer apparently forgot to include it and since we've blown the 16K budget, we have to pay for the light and the installation ourselves. Or we can choose to showing in the dark. It's not that its expensive; we actually found a light for under $60 that we liked (that's what made us think about the light and ask what kind it was going to be), it is the principle. This is her job; she should do it properly or take responsbility when she fucks up. The designer's reaction? "oh, I guess I forgot".
As a parent of a child with a disability, you end up asking for help from alot of different people. Keeping your dignity while you are doing that is not always easy. It was certainly not easy to admit that we could not afford to pay for the adaptation ourselves and that we could not afford to pay the 60K estimate that was given with the original proposal. When you feel like you are being condescended to because you ask a question, it is not only frustrating but extremely humiliating.
On top of it, I tried to contact the various supervising units and they all abdicate responsibility – and refer us back to her. Then Brian and I were arguing about how to respond to her. I just want the woman to admit that she made a mistake and take responsibility for it – and he just wants to bury it and get the work done. AARGHH
'til next time.
Thursday, December 9, 2010
Adaptations
So we've finally made it through all the approval steps and are approaching the actual home adaptation work. Tonight we have an appointment to choose what the bathroom will look like as well as the doors to the bathroom and Ronnie's bedroom. I think we also get to choose paint colours. At least I hope so. We also get to choose a new vanity and toilet. I'm thinking purple just to freak Emma out. :-)
At the same time we are going to try to change all the bedroom doors. It would look kind of stupid to have two nice new doors and have all the others be this icky fake wood stuff they use to use 40 years ago. We'll have to pay for them but as I said, it would be kind of stupid not to do so.
It is really interesting how the subsidy organizes things. There doesn't seem to be any rationale about what is covered and what is not. For example, a new back door is paid for but to raise/reinforce the deck that leads to the door is not covered...Tres weird...
This should be fun. At least I hope it will be fun. And I have a good idea of what I want.
'til next time.
At the same time we are going to try to change all the bedroom doors. It would look kind of stupid to have two nice new doors and have all the others be this icky fake wood stuff they use to use 40 years ago. We'll have to pay for them but as I said, it would be kind of stupid not to do so.
It is really interesting how the subsidy organizes things. There doesn't seem to be any rationale about what is covered and what is not. For example, a new back door is paid for but to raise/reinforce the deck that leads to the door is not covered...Tres weird...
This should be fun. At least I hope it will be fun. And I have a good idea of what I want.
'til next time.
Tuesday, December 7, 2010
How tough are we?
So, I was reading another blog that commented on Robert Latimer recently being granted parole, and I added a comment "anonymously". Robert Latimer, in case you don't know, was the father of a severely disabled young girl whom he "mercy" killed. I put the quotes around mercy because I'm not quite sure how to describe it. The blog I was reading described it as murder and he was convicted of second-degree murder, but I'm still not quite sure how I feel about it - explains why I posted it anonymously... sort of.
I think that unless you've walked a mile in someone else's shoes, it is very difficult to second guess a decision they make. We may not agree with the decision/action someone else has taken but... the only thing we can control is our reaction to it. Conversely, people are judgemental by nature: We make judgement calls on a daily basis from what we wear to what we eat or choose not to eat to whom we speak to and whose phone calls we decide not to answer. Anyone who says "I don't judge people" is lying.
I can only guess that he and his family must have been at the end of their endurance and that unfortunately, social services and their support networks were not able to meet their pleas for help. At least that is what I'd like to think. We, the parents of children with special needs, are a hardy lot. However we all have our limits. He and presumably his wife felt that this was the only way out for their daughter; that is incredibly sad.
'til next time.
I think that unless you've walked a mile in someone else's shoes, it is very difficult to second guess a decision they make. We may not agree with the decision/action someone else has taken but... the only thing we can control is our reaction to it. Conversely, people are judgemental by nature: We make judgement calls on a daily basis from what we wear to what we eat or choose not to eat to whom we speak to and whose phone calls we decide not to answer. Anyone who says "I don't judge people" is lying.
I can only guess that he and his family must have been at the end of their endurance and that unfortunately, social services and their support networks were not able to meet their pleas for help. At least that is what I'd like to think. We, the parents of children with special needs, are a hardy lot. However we all have our limits. He and presumably his wife felt that this was the only way out for their daughter; that is incredibly sad.
'til next time.
Friday, December 3, 2010
New wheels on life
So, I had a note from Ronnie's physical therapist yesterday. They are in the midst of re-doing all of her evaluations for a revised EIP and apparently they are really putting her through her paces. Anyway, they are suggesting getting bigger wheels for her wheelchair - so she can wheel herself around.
Yes, I did say bigger wheels so she can wheel herself around.... my brain almost exploded thinking about little Ronnie wheeling herself around the house and down the front stairs and into Emma's bedroom and then down the stairs to be basement. Emma is deadset against it but that's because all she can see is Ronnie coming into her room whenever she wants; like a "regular" sister-thing she never had to deal with in the past.
I just see disaster after disaster... I have to put the brakes on the thoughts; it will take her quite some time before she can roll around the house under her own steam (so-to-speak). In the meantime I guess her school is discovering that she is developing the skills needs to push the boundaries. And so are we.
Good for her but scary for us.
'til next time.
Yes, I did say bigger wheels so she can wheel herself around.... my brain almost exploded thinking about little Ronnie wheeling herself around the house and down the front stairs and into Emma's bedroom and then down the stairs to be basement. Emma is deadset against it but that's because all she can see is Ronnie coming into her room whenever she wants; like a "regular" sister-thing she never had to deal with in the past.
I just see disaster after disaster... I have to put the brakes on the thoughts; it will take her quite some time before she can roll around the house under her own steam (so-to-speak). In the meantime I guess her school is discovering that she is developing the skills needs to push the boundaries. And so are we.
Good for her but scary for us.
'til next time.
Thursday, December 2, 2010
Life is good
So, I have to admit that lately things have been really good. Ronnie is Ronnie: just herself and pure pleasure to be around. Emma seems to have dropped the pre-teen anxiousness that has been pretty much the rule for the last several months (o.k.; maybe years) and 98% of the time is just fun to be around. As we lead up to Christmas she's trying to be extra good by sucking up to her sister. She keeps trying to sneak Gummie bears to Ronnie (she is a gummie bear freak). Ron just thinks its funny and then you hear Emma whisper "don't tell daddy"... its really cute - would be nice if it lasted for more than a month, but...
Because Emma is calmer, Brian is calmer. We've really stuck up for each other in this instance (Emma's behaviour) and it seems to be paying off from all corners.
Does make for boring blogs, tho...
'til next time.
Because Emma is calmer, Brian is calmer. We've really stuck up for each other in this instance (Emma's behaviour) and it seems to be paying off from all corners.
Does make for boring blogs, tho...
'til next time.
Tuesday, November 30, 2010
Meds, monologues and monsoons, OH MY
Meds: So, Ronnie just had her appointment with her neurologist and he wants us to increase one of her medications. We already increased it last week but he wants us to go higher. The assumption is that her growth is outstripping her med levels and they are just not keeping up. Hopefully we won't have to increase them too much...
Monologues: Emma will be auditioning for the junior play and to do so, she has to put together a 10-line monolog. I heard what she wrote yesterday and its kind of funny. I'll let you know how it goes.
Monsoons: not really, I just needed another M-word. Although for the day before December, you'd think we would get snow. Instead it is raining alot and it is ancitipated to continue all day tomorrow.
Rowboat anyone???
That's it.
'til next time.
Monologues: Emma will be auditioning for the junior play and to do so, she has to put together a 10-line monolog. I heard what she wrote yesterday and its kind of funny. I'll let you know how it goes.
Monsoons: not really, I just needed another M-word. Although for the day before December, you'd think we would get snow. Instead it is raining alot and it is ancitipated to continue all day tomorrow.
Rowboat anyone???
That's it.
'til next time.
Monday, November 29, 2010
Fairly quiet weekend
 |
| Look at those long legs |
So, Saturday was the wrap-up Christmas party for Dreams Take Flight. Ronnie was able to see the group monitors and get her picture taken with Santa, Mrs. Claus and the Snow Fair. Mommy and daddy were also given the official DVD as well as a slideshow of just her group which was really appreciated. And so thoughtful. She also received a couple of pre-holiday presents, some of which she can play with but we've given the Origami set too her sister. Emma actually loves doing origami - she's such a nerd (but I love her anyway)...
I have to say that Emma has been incredibly supportive and well-behaved during this whole Disney thing. No pre-teen anxst, no drama; just smiles. She has had her jealous moments which I fully understand (and they have not gotten out of hand), but in her mind there was never any question of her coming with us to these events.
Thank you Emma.
Oh, and it snowed on Saturday morning and to my dismay, there is still now on the ground.
'til next time.
Friday, November 26, 2010
Big kids room?
So, I had a meeting today with Ronnie's social worker. We've actually had the same social worker for several years now but this was the first time we ever met. Not that we didn't try, but... I guess after the temper tantrum I had several weeks ago, they are trying to play nice. I got to clear the air and let her know that my trust level is zip. I suppose the good news is that it can only get better.
We talked about alot of different things including a new bed for Ronnie. For now she still fits in her cage (single-size hospital bed inside a crib-like enclosure) but eventually she'll figure out she can stand up in it; then we will really be up shit's creek. I'm trying to debate if I like her ideas or not. Our main concern is her safety and ensuring that everyone gets a good night's sleep. A large part of their concern is that we don't 'trap' her in her room. This was the reason they didn't want to give us the 'cage' bed in the first place.
She is suggesting a low bed with a cushy mattress beside it in case she falls out. Then we could put all these foam squares on the floor, bracket her bureau to the wall and lock the drawers. If you put all kinds of cushions on the floor and even some bean bag chairs, it could end up looking more like a kids room than it does now with the gun-metal gray crib-cage. Hhhhhmmmmmm, something to think about.
'til next time.
We talked about alot of different things including a new bed for Ronnie. For now she still fits in her cage (single-size hospital bed inside a crib-like enclosure) but eventually she'll figure out she can stand up in it; then we will really be up shit's creek. I'm trying to debate if I like her ideas or not. Our main concern is her safety and ensuring that everyone gets a good night's sleep. A large part of their concern is that we don't 'trap' her in her room. This was the reason they didn't want to give us the 'cage' bed in the first place.
She is suggesting a low bed with a cushy mattress beside it in case she falls out. Then we could put all these foam squares on the floor, bracket her bureau to the wall and lock the drawers. If you put all kinds of cushions on the floor and even some bean bag chairs, it could end up looking more like a kids room than it does now with the gun-metal gray crib-cage. Hhhhhmmmmmm, something to think about.
'til next time.
Wednesday, November 24, 2010
Monumental moment
So here I am, still at work supposedly working, but really reading blogs (Connor's Song) when one sentence just blows my mind The mom is talking about how they recently bought an Ipad for their son and she had just programed it to say "good night, daddy".
Just like that a child that cannot speak is given a voice.
'til next time.
Just like that a child that cannot speak is given a voice.
'til next time.
Monday, November 22, 2010
Happy Potter – the end of the saga
So, after all my moaning and groaning I finally got to go and see HP7 with Emma. Her friend that bailed on Friday was supposed to come with us but, oh big surprise, she bailed again. Oh, wait, it wasn’t her fault, her parents were not being very nice and since it took me 30 seconds before agreeing to take the girls, they made alternate plans and wouldn’t let her come with us.
I’d really like to be mature about this but I’m really annoyed on Emma’s behalf. This was something the girls were both looking forward to (me as well if I’m being perfectly honest). It’s not the first time her parents do this and it certainly won’t be the last, but I just have a hard time with understanding the rationale. They are so insular that they seem to be having a hard time allowing her to be her own person. Just allowing her out of their sight seems to be a problem sometimes. The sad part is that this is now becoming a learned behavior for their daughter. She is now doing the same thing and spends weeks where she just shuts everyone out.
It’s funny – just writing that last sentence makes me wonder if there is a problem. I wonder if she gets depressed or if it just a general shut down because she can’t be bothered to interact with anyone? Hhhmmm… something to think about.
Anyhoo, HP7 was really good and it finally met the expectations. As an added bonus I got to spend some time with my kiddo which was really fun.
‘til next time.
Sunday, November 21, 2010
Slow weekend
So this weekend has been kind of quiet. Emma went to see HP7 with some of her friends on Friday and we rented the Last Air Bender on DVD last night. Between groceries, shopping and cleaning house, it doesn't feel like there is alot of extra time to just 'chill' but I guess that's life.
We also just increased Ronnie's topomax so hopefully the number of seizures she has will start to go down. I mean they are not huge seizures, just head drops but I'm sure it is annoying for the kiddo to keep popping in & out that way.
I have to admit that I'm annoyed with one of Emma's friends. She was supposed to go to HP7 with her then bailed at the last minute. Now the two of them want to go see it today (and I've been invited to drive them to the theatre) but I'm not thrilled because i think her friend bailed on purpose... and now she keeps lying about it. Should I just be mature and get over it? Hmmmm; something to think about.
'tl next time.
We also just increased Ronnie's topomax so hopefully the number of seizures she has will start to go down. I mean they are not huge seizures, just head drops but I'm sure it is annoying for the kiddo to keep popping in & out that way.
I have to admit that I'm annoyed with one of Emma's friends. She was supposed to go to HP7 with her then bailed at the last minute. Now the two of them want to go see it today (and I've been invited to drive them to the theatre) but I'm not thrilled because i think her friend bailed on purpose... and now she keeps lying about it. Should I just be mature and get over it? Hmmmm; something to think about.
'tl next time.
Friday, November 19, 2010
I was dumped from Harry Potter night
So, when Emma was 8 or 9 years old and watching wayyyyyy too much TV, I decided that we would "read" the Harry Potter books. It took us almost a full academic year but we read all seven books out loud.
When we started reading the first book, she would pout and get mad every time I pulled it out. But before the first week was up, she was jumping into her p.j.s and throwing the book at me barking out one word: "READ". Since those days she has become an voracious reader (which is great) and a Harry Potter fanatic (which is a little scary sometimes). However, J.K. Rowling has done an increadible thing and opened up the imagination of millions of kids worldwide.
Beginning with the second movie, it was a tradition that I would take Emma and one of her friends who is just as fanatic, to see the HP movies when they come out. This HP7 was not different. It had been planned since "like forever" that I would take them on opening night (tonight) to see it. Instead, I got dumped...
A group of her friends (originally slated to be about 7) decided they were going to go and I was not invited. I tried my best to guilt her into it, but it didn't work. Today is opening day and the group of 7 has been reduced to 3, and just to show I hold no hard feelings, I even bought them their tickets in advance. And no, I'm still not allowed to go.
'til next time.
P.S.: my favorite character is Mrs. Weasley. She rocks.
When we started reading the first book, she would pout and get mad every time I pulled it out. But before the first week was up, she was jumping into her p.j.s and throwing the book at me barking out one word: "READ". Since those days she has become an voracious reader (which is great) and a Harry Potter fanatic (which is a little scary sometimes). However, J.K. Rowling has done an increadible thing and opened up the imagination of millions of kids worldwide.
Beginning with the second movie, it was a tradition that I would take Emma and one of her friends who is just as fanatic, to see the HP movies when they come out. This HP7 was not different. It had been planned since "like forever" that I would take them on opening night (tonight) to see it. Instead, I got dumped...
A group of her friends (originally slated to be about 7) decided they were going to go and I was not invited. I tried my best to guilt her into it, but it didn't work. Today is opening day and the group of 7 has been reduced to 3, and just to show I hold no hard feelings, I even bought them their tickets in advance. And no, I'm still not allowed to go.
'til next time.
P.S.: my favorite character is Mrs. Weasley. She rocks.
Thursday, November 18, 2010
Oh, that darn stubborn head of hers
So we've just found out that Emma has failed a geography exam. Why? Because she didn't study... Although I'm annoyed she failed, I think I'm more annoyed with the fact that she had all the tools at her disposal to do well and has refused to use them. Then, when her refusal blows up on her, she just sits and cries and puts herself down. And this goes for everything not just a geography test.
In this case, she had advance notice of this test by a couple of weeks and despite our nagging to crack open a book "my teacher said we didn't need to study anything" became the stock answer everytime we brought it up.
Reasons she failed included: "I was sick the day she covered map reading" (may have been true but she was sick 2 months ago); "she gave us an exam on something we never covered" (read excuse #1); "I didn't understand" (try asking a freaking question!!!).
This I find frustrating. Doesn't bring out the best in me.
'til next time.
In this case, she had advance notice of this test by a couple of weeks and despite our nagging to crack open a book "my teacher said we didn't need to study anything" became the stock answer everytime we brought it up.
Reasons she failed included: "I was sick the day she covered map reading" (may have been true but she was sick 2 months ago); "she gave us an exam on something we never covered" (read excuse #1); "I didn't understand" (try asking a freaking question!!!).
This I find frustrating. Doesn't bring out the best in me.
'til next time.
Wednesday, November 17, 2010
Happy days with EPO
So yesterday was very interesting. Because Ronnie is having more seizures, neurogoly wants us to increase one of her meds (topomax) which of course, is the most expensive one. We are going to give her a couple of extra days just to see if maybe she was overly tired from lack of sleep, insomnia being a side effect of Angelman syndrome. Thankfully she usually stays fairly quiet, a situation that from my understanding is not all that common among AS kids.
Anyway we are going to give her a couple of extra days and maybe by the weekend we'll increase the dosage.
As for Emma, she's just weird. I love the kid to death but when she is upset, she is Goth to the end but when she is happy she is so ebullient its almost weird; funny but weird. We've started using Evening Primrose Oil to treat PMS symptoms so maybe that is having an effect? I'll keep you posted. What I do know for sure is that right now all seems to be right with her world which reduces the stress on us. I think (I hope) we (meaning Brian) are taking on less of her stress which in turn is reducing the swirling vortex of misery effect.
Let's hope it lasts.
'til next time
Anyway we are going to give her a couple of extra days and maybe by the weekend we'll increase the dosage.
As for Emma, she's just weird. I love the kid to death but when she is upset, she is Goth to the end but when she is happy she is so ebullient its almost weird; funny but weird. We've started using Evening Primrose Oil to treat PMS symptoms so maybe that is having an effect? I'll keep you posted. What I do know for sure is that right now all seems to be right with her world which reduces the stress on us. I think (I hope) we (meaning Brian) are taking on less of her stress which in turn is reducing the swirling vortex of misery effect.
Let's hope it lasts.
'til next time
Tuesday, November 16, 2010
Seizures, Karate and Veggie Jumbalaya
So, one of the side effects of Angelman syndrome as seizures. Ronnie has myoclonic epilepsy which is somewhat controlled by medication. She seems to go through ups and downs and lately she is having more seizures; to the point that even her teacher is noticing. Anyway, we've contacted her neurologist and we have an appointment in a couple of weeks to have her meds adjusted.
Emma had karate last night and it was kind of funny: the sensei was teaching them self-defense holds and I almost put up my hand to ask "Is there a way to defend yourself against these holds? I'm pretty sure she's going to be practicing some of them me". but I didn't. See, I can be mature!!!
I'm getting used to all the vegetarian food but sometimes I feel like I should start a minor revolution. Veggie Jumbalaya - was okay except for the pieces of vege sausage... kinda nasty. Sorry hon.
"til next time.
Emma had karate last night and it was kind of funny: the sensei was teaching them self-defense holds and I almost put up my hand to ask "Is there a way to defend yourself against these holds? I'm pretty sure she's going to be practicing some of them me". but I didn't. See, I can be mature!!!
I'm getting used to all the vegetarian food but sometimes I feel like I should start a minor revolution. Veggie Jumbalaya - was okay except for the pieces of vege sausage... kinda nasty. Sorry hon.
"til next time.
Monday, November 15, 2010
Daily affirmations; sort of
So, I've decided to try and post on a daily basis and use this as a short of journal-ish thing. I'm not sure if this will work or even be interesting to anyone but me, but it is something I'd like to try. I think this was my original thought process anyway, but I have such a hard time committing to these things....
Anyhoo, here goes: We actually had a pretty good weekend until we tried to play with both Emma and Ronnie at the same time. Poor Ronnie: her butt must get so numb 'cause sometimes she spends hours sitting in her chair. I'm out and about with Emma and Brian is doing stuff around the house and we just don't have time to play with her like good parents. Anyway, so yesterday I took her out of her chair and placed her on the floor and I sat at the other end of the hallway and encouraged her to crawl toward me; which she did. Then Brian sat down at the other end and she crawled towards him. Then Emma came and sat with me and Ronnie gave up crawling - she was with her dad and so all was good in the world. Finally Brian got up and walked her towards Emma and me and we were all laughing... until Ronnie got too close for Emma's liking and she started to freak. Now granted Ronnie stepped on her but I hardly think she was cutting off Emma breath and was practically suffocating her as Emma would have us believe.
I get scared when I think of Ronnie's future. What will it be like? Who will take care of her? Will she be stuck in an institution/half way home with no one to look out for her? I know it is not Emma's responsibility to take care of her but sometimes I wonder if she will even acknowledge the fact that she has a sister when we are no longer around to force it. I wish Emma would let herself go enough to enjoy Ronnie for who she is and ignore the fact that she drools. (if this being written on paper rather a screen, there would be little tear stains on the page; how's that for pathetic).
Anyway, Emma and I had a good chat afterwards where she finally admitted that she would be sad if something happened to her sister. This I can work with; indifference is a different beast all together. I'm done now.
'til next time.
Anyhoo, here goes: We actually had a pretty good weekend until we tried to play with both Emma and Ronnie at the same time. Poor Ronnie: her butt must get so numb 'cause sometimes she spends hours sitting in her chair. I'm out and about with Emma and Brian is doing stuff around the house and we just don't have time to play with her like good parents. Anyway, so yesterday I took her out of her chair and placed her on the floor and I sat at the other end of the hallway and encouraged her to crawl toward me; which she did. Then Brian sat down at the other end and she crawled towards him. Then Emma came and sat with me and Ronnie gave up crawling - she was with her dad and so all was good in the world. Finally Brian got up and walked her towards Emma and me and we were all laughing... until Ronnie got too close for Emma's liking and she started to freak. Now granted Ronnie stepped on her but I hardly think she was cutting off Emma breath and was practically suffocating her as Emma would have us believe.
I get scared when I think of Ronnie's future. What will it be like? Who will take care of her? Will she be stuck in an institution/half way home with no one to look out for her? I know it is not Emma's responsibility to take care of her but sometimes I wonder if she will even acknowledge the fact that she has a sister when we are no longer around to force it. I wish Emma would let herself go enough to enjoy Ronnie for who she is and ignore the fact that she drools. (if this being written on paper rather a screen, there would be little tear stains on the page; how's that for pathetic).
Anyway, Emma and I had a good chat afterwards where she finally admitted that she would be sad if something happened to her sister. This I can work with; indifference is a different beast all together. I'm done now.
'til next time.
Sunday, November 14, 2010
Being calm to avoid the storm
So, the last few weeks with Emma have actually been pretty good. After our last yelling match which had to do with her spending 20 minutes staring at her socks convinced that they were not the same blue (seriously) instead of getting ready for school, we decided to try a different tact: to whit, we gave her an alarm clock, set it for 6am and gave her the responsibility of getting herself up and ready to leave for school.
And it is working...
She's had a few mornings where the panic starts but she then manages to pull back before it gets totally out of control and gets herself ready. I'm so proud and happy... The stress level has reduced tremendously and we are all getting along much better.
No one told me that 12 would be a repeat of the terrible twos... now I'm worried about the throttle 'em threes....
'til next time.
And it is working...
She's had a few mornings where the panic starts but she then manages to pull back before it gets totally out of control and gets herself ready. I'm so proud and happy... The stress level has reduced tremendously and we are all getting along much better.
No one told me that 12 would be a repeat of the terrible twos... now I'm worried about the throttle 'em threes....
'til next time.
Friday, November 5, 2010
Disney World in a day
On Wednesday, the four of us were up and out of the house by 3:30am. Why? To bring Ronnie to the airport of course!!! Ronnie had been chosen by an organization called Dreams Take Flight (DTF)http://yul.dreamstakeflight.ca/en/index.html to go to Disney World for one day. Yes, I did say one day.
What was really nice is that Emma can with us to drop her off and pick her up and she was really friendly. She wasn't snotty or embarrassed to be seen with us but was actually really good. Both girls got their pictures taken with several Montreal-area mascots and Emma got to sit in the cockpit of an F18.
The DTF people are incredible. They took 180 kids to Disney and outfitted them and the volunteers from head to foot - even new shoes; the plane practically parked in the hangar... it was really cool. I can only imagine how excited all the kids must have been.
Anyway, we were back at the airport for 12:00pm (midnight) to pick her up but we didn't get back until past 1:00am... what a long day for everyone!!! But she had an amazing time. Rode the rides (some in her wheelchair and some out), ate lots of food and met all the Disney characters you would ever want to meet. I can't wait to see the pictures.
We actually kept everyone home the next day so we could all recoup... I think that was a brilliant idea. I don't think I've ever seen a kid that tired before... it was actually quite funny.
Anyway, the kids all had a wonderful time and I'm really not sure who appreciated the trip more: the parents, the kids or the volunteers... Thank you thank you thank you for allowing her this opportunity.
'til next time.
What was really nice is that Emma can with us to drop her off and pick her up and she was really friendly. She wasn't snotty or embarrassed to be seen with us but was actually really good. Both girls got their pictures taken with several Montreal-area mascots and Emma got to sit in the cockpit of an F18.
The DTF people are incredible. They took 180 kids to Disney and outfitted them and the volunteers from head to foot - even new shoes; the plane practically parked in the hangar... it was really cool. I can only imagine how excited all the kids must have been.
Anyway, we were back at the airport for 12:00pm (midnight) to pick her up but we didn't get back until past 1:00am... what a long day for everyone!!! But she had an amazing time. Rode the rides (some in her wheelchair and some out), ate lots of food and met all the Disney characters you would ever want to meet. I can't wait to see the pictures.
We actually kept everyone home the next day so we could all recoup... I think that was a brilliant idea. I don't think I've ever seen a kid that tired before... it was actually quite funny.
Anyway, the kids all had a wonderful time and I'm really not sure who appreciated the trip more: the parents, the kids or the volunteers... Thank you thank you thank you for allowing her this opportunity.
'til next time.
Monday, November 1, 2010
Meet the teacher and IEP
So last week I had a quick "meet the teacher" appointment with Ronnie's teacher Anna. She seems to a lovely woman who really likes the kids in her class which is great; and Ronnie, being Ronnie, has managed to wrap everyone at school around her little finger... everyone knows Ronnie.
Anyway, so the really good news is that this year we get to update her IEP and one of the things we want to focus on is communication. Her teacher and I agree that Ronnie is now at a place where we can start using pictograms. I want to start basic and only focus on a couple; like Yes, No, More, Hungry, Thirsty. Although it would be hysterical to get her signing something rude to her sister I don't think we are there yet. That's what her parents are for; we've got your back baby : )
It was also quite interesting to discover things she does at school that she does not do at home and vice versa. She will stand and lean on a table while getting her diaper changed at school but at home, she plays rolly-polly-crocodile-death-spiral on us when we change her diaper (you want an extreme sport? Try changing and Angel-diaper - most people break a sweat)..
They get her to craw and we get her to walk up stairs. They can leave a bowl on food on her tray and we have to keep it away from her fast hands and longer arms or she knocks it to the ground. They can't get her to eat anyting but pasta and we can get her to eat practically everything - no matter how spicy it may be.
All this to say that I'm looking forward to adjusting her IEP and placing concrete goals versus pie-in-the-sky generic ones. Thanks to the Angelman Conference this summer I actually fee like I'll know what I'm doing this time around.
'til next time.
Anyway, so the really good news is that this year we get to update her IEP and one of the things we want to focus on is communication. Her teacher and I agree that Ronnie is now at a place where we can start using pictograms. I want to start basic and only focus on a couple; like Yes, No, More, Hungry, Thirsty. Although it would be hysterical to get her signing something rude to her sister I don't think we are there yet. That's what her parents are for; we've got your back baby : )
It was also quite interesting to discover things she does at school that she does not do at home and vice versa. She will stand and lean on a table while getting her diaper changed at school but at home, she plays rolly-polly-crocodile-death-spiral on us when we change her diaper (you want an extreme sport? Try changing and Angel-diaper - most people break a sweat)..
They get her to craw and we get her to walk up stairs. They can leave a bowl on food on her tray and we have to keep it away from her fast hands and longer arms or she knocks it to the ground. They can't get her to eat anyting but pasta and we can get her to eat practically everything - no matter how spicy it may be.
All this to say that I'm looking forward to adjusting her IEP and placing concrete goals versus pie-in-the-sky generic ones. Thanks to the Angelman Conference this summer I actually fee like I'll know what I'm doing this time around.
'til next time.
Saturday, October 23, 2010
Ronnie's story or how an angel got her wings (part 2)
I'm back to finish this up and hope to make the second half shorter...
Because of the metabolic disorder diagnosis, we were referred to Genetics at the Montreal Children's Hospital. At our first appointment, we were lucky enough to have a medical resident who had just come back from a conference on rare genetic disorders. After seeing Ronnie, she asked to test her for Angelman syndrome. The rest is history. She is now 9 years old and going to a wonderful school that is pushing her skills and boundaries. She has a great laugh, sense of humour and an incredibly joyful personality - could be part of her syndrome but I prefer to think of it as her personality.
Ronnie has had her fair share of ups and downs medically (never forget the 21 days she spent in intensive care hooked up to oxygen after contracting RSV, a nasty little virus), even when you do not include surgery when she was 10 months old to fix a duplex ureter birth defect... thankfully in the last few years she has been strong and healthy - grows like a weed.
The last seven years have been quite the journey; one I could never have anticipated. I've discovered that I am a much more positive person that I ever thought I could be and that my patience for self-pity and constant negativity is next to nil. I've learned that when I'm down, my husband is up and rather than continue to feel like Hanzel and Gretel lost in the woods, we've managed to find those breadcrumbs and carve out a nice little life with our incredible children.
That's it.
'til next time.
Because of the metabolic disorder diagnosis, we were referred to Genetics at the Montreal Children's Hospital. At our first appointment, we were lucky enough to have a medical resident who had just come back from a conference on rare genetic disorders. After seeing Ronnie, she asked to test her for Angelman syndrome. The rest is history. She is now 9 years old and going to a wonderful school that is pushing her skills and boundaries. She has a great laugh, sense of humour and an incredibly joyful personality - could be part of her syndrome but I prefer to think of it as her personality.
Ronnie has had her fair share of ups and downs medically (never forget the 21 days she spent in intensive care hooked up to oxygen after contracting RSV, a nasty little virus), even when you do not include surgery when she was 10 months old to fix a duplex ureter birth defect... thankfully in the last few years she has been strong and healthy - grows like a weed.
The last seven years have been quite the journey; one I could never have anticipated. I've discovered that I am a much more positive person that I ever thought I could be and that my patience for self-pity and constant negativity is next to nil. I've learned that when I'm down, my husband is up and rather than continue to feel like Hanzel and Gretel lost in the woods, we've managed to find those breadcrumbs and carve out a nice little life with our incredible children.
That's it.
'til next time.
Thursday, October 21, 2010
Ronnie's story or how an angel got her wings
So I thought it should put down Ronnie's story just in case someone ever wonders what she is all about.
Ronnie has Angelman syndrome. This is caused by a genetic mutation on Chromosome 15. She is actually missing an infinitesimally small piece of the maternal chromosome. The more obvious side effect of the missing piece is what is explained as 'global development delay'. As I write this she is a happy go-lucky 9 year old who does not walk independently, does feed herself and doesn't talk (although she does babble a heck of alot). She does use a walker at school as well as a tricyle (but fair warning, she is a speed demon who doesn't quite understand the brakes or why she has to hold the handlebars...). If you want more information, see the following links: http://www.angelmancanada.org/ or http://angelman.org/
When she was very little, I remember her older sister asking 'Ronnie's gonna talk next week, right?' There was just no way to know at that time that talking was just not something she would ever excel at (unlike her sister). She does have some sounds that mean certain things and ways to get some of her needs/wants known but it often becomes a bit of a guessing game.
Anyway, when Ronnie was about 9 months old or so I remember asking her pediatrician if there was a connection between the vaccines an autism (something that is still hotly debated) and he said No. I remember telling him that I was worried that she wasn't hitting her milestones and that compared to her sister, she was really late. His answer was that there was a range to these milestones and not to worry. I also remember telling him that she would do this weird thing that looked like she was almost falling asleep for a second and then her head would basically bop back up like normal. Again, he told me not to worry, she was probably just really tired. Little did we know these were seizures.
Anyway, fast forward to almost 1 year later and Ronnie is really sick with a big fever. We were getting the girls ready for bed when I suddenly realized that she wasn't moving and was just lying there not responding to anything. I picked her up and kind of tapped her chest... still nothing... her eyes were open and she was staring at the ceiling. All of a sudden, like a cold slap, I realized she was having an absence seizure. That was a scary sight that I will never forget. Anyway, so we called 911 and they brought her to the hospital where she proceeded to stay for the next ten 10 while undergoing so many tests that she was stoned for like 4 days...
At the end of the stay, all we knew was that she was diagnosed with rule-out Mayple Syrup Urine Disease (metabolic disorder) which led us to Genetics at the Montreal Children's hospital and that she might have cerebral palsy. Oh, and the seizures? She was having an average of 50-70 a day and no one realized....
I'll have to continue tomorrow as it is Ronnie's bedtime and daddy is at Karate...
Ronnie has Angelman syndrome. This is caused by a genetic mutation on Chromosome 15. She is actually missing an infinitesimally small piece of the maternal chromosome. The more obvious side effect of the missing piece is what is explained as 'global development delay'. As I write this she is a happy go-lucky 9 year old who does not walk independently, does feed herself and doesn't talk (although she does babble a heck of alot). She does use a walker at school as well as a tricyle (but fair warning, she is a speed demon who doesn't quite understand the brakes or why she has to hold the handlebars...). If you want more information, see the following links: http://www.angelmancanada.org/ or http://angelman.org/
When she was very little, I remember her older sister asking 'Ronnie's gonna talk next week, right?' There was just no way to know at that time that talking was just not something she would ever excel at (unlike her sister). She does have some sounds that mean certain things and ways to get some of her needs/wants known but it often becomes a bit of a guessing game.Anyway, when Ronnie was about 9 months old or so I remember asking her pediatrician if there was a connection between the vaccines an autism (something that is still hotly debated) and he said No. I remember telling him that I was worried that she wasn't hitting her milestones and that compared to her sister, she was really late. His answer was that there was a range to these milestones and not to worry. I also remember telling him that she would do this weird thing that looked like she was almost falling asleep for a second and then her head would basically bop back up like normal. Again, he told me not to worry, she was probably just really tired. Little did we know these were seizures.
Anyway, fast forward to almost 1 year later and Ronnie is really sick with a big fever. We were getting the girls ready for bed when I suddenly realized that she wasn't moving and was just lying there not responding to anything. I picked her up and kind of tapped her chest... still nothing... her eyes were open and she was staring at the ceiling. All of a sudden, like a cold slap, I realized she was having an absence seizure. That was a scary sight that I will never forget. Anyway, so we called 911 and they brought her to the hospital where she proceeded to stay for the next ten 10 while undergoing so many tests that she was stoned for like 4 days...
I'll have to continue tomorrow as it is Ronnie's bedtime and daddy is at Karate...
Thursday, October 14, 2010
Thank God for Babysitters
So Brian and I are going to an information session for Ronnie's trip to Disney tonight and I'm really looking forward to it. It will be interesting to see how they have this set up. I've looked online and was able to glean some information but it still remains a bit of a mystery to me.
We've lined up a babysitter who will take care of Ronnie and Emma will be hopefully doing her homework despite the fact that she has no school tomorrow (I hope she'll be doing her homework); but this got me to thinking about what we did before babysitters came along - qualified ones for Ronnie. It's really simple: we didn't do anything. No date night, no "us" time, no escape (yes that is the right word) from the kids and home. Oh, don't get me wrong; I love my kids but to get a break everyone once in a while is wonderfully refreshing. And as much as the family wants to help, they have busy schedules.
In came Summer day camp. Ronnie started to go about three years ago and it has been fabulous. Not only does it allow us to have jobs (good idea all things considered), but the girls who work at the day camp are all studying special ed. This gives them an opportunity for hands-on experience and it gave us a couple of really wonderful young ladies who do respite care for us.
'til next time.
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| Ronnie finger painting at daycamp |
Best of all they really care about the girls. Its really nice to know that I am leaving my girls in good hands..
Thursday, October 7, 2010
Commonalities between sisters
So I was at work today and we were all joking about noses and plastic surgery. And no, there is nothing wrong with my nose; its perfectly acceptable. Anyway, it got me thinking about the similarities between my girls.
Leaving aside Veronica's disability, they are incredibly different people. Ronnie is calm and easy going and Emma is high strung and prone to irrepressible fits of anger (AKA temper tantrums). I think that would still be the case if Ronnie wasn't disabled but the one thing they do have in common is the dimple in their chins. I remember trying to figure out where it came from. We decided that much to my chagrin, it came from my father (long story that is soooo not worth the mental energy) as he had one. Emma's is so big you could practically store food in there... although you'd have to be crazy to tell her that. Hee hee
That's it; no big philosophical statement of purpose tonight.
'til next time...
Leaving aside Veronica's disability, they are incredibly different people. Ronnie is calm and easy going and Emma is high strung and prone to irrepressible fits of anger (AKA temper tantrums). I think that would still be the case if Ronnie wasn't disabled but the one thing they do have in common is the dimple in their chins. I remember trying to figure out where it came from. We decided that much to my chagrin, it came from my father (long story that is soooo not worth the mental energy) as he had one. Emma's is so big you could practically store food in there... although you'd have to be crazy to tell her that. Hee hee
That's it; no big philosophical statement of purpose tonight.
'til next time...
Monday, October 4, 2010
Countdown to Disney & Dreams Take Flight
So sometime in late spring we were contacted by Ronnie's school to add her name to the list of suggested names for the upcoming Dreams Take Flight. This organization takes kids from across Canada and I think some cities in the U.S. and flies them to Disney World for a day. The kids chosen are those that are ill, disabled or socially disadvantaged (and no, wearing dirty socks every day for 2 weeks does not qualify you as socially disadvantaged Emma)...We sort of said OK never thinking she would actually be chosen..
link to Dreams Take Flight
To our utter shock (and her sister's utter disgust) she was. One one hand I am extremely grateful for this opportunity that is being offered; it is an experience that I'm not sure we'll be able to give our girls no matter how much we would like to. On the other hand, I so desperately want to be there to see her face light up when she gets her first glimpse of Tigger or Eyeore. Word to the wise: Tigger and Eyeore, you might want to keep tabs on your noses and tails... she bites like a bulldog :)
I've also just realized that the trip is less than one month away and I'm a little stunned that my baby girl will be going on a plane without us and we will not be with her to share this experience. Lets face it, it's not like she'll be able to tell us about it. Enough maudlin' talk.
Have a wonderful time Ronnie-bins!!!!!
'til next time.
To our utter shock (and her sister's utter disgust) she was. One one hand I am extremely grateful for this opportunity that is being offered; it is an experience that I'm not sure we'll be able to give our girls no matter how much we would like to. On the other hand, I so desperately want to be there to see her face light up when she gets her first glimpse of Tigger or Eyeore. Word to the wise: Tigger and Eyeore, you might want to keep tabs on your noses and tails... she bites like a bulldog :)
I've also just realized that the trip is less than one month away and I'm a little stunned that my baby girl will be going on a plane without us and we will not be with her to share this experience. Lets face it, it's not like she'll be able to tell us about it. Enough maudlin' talk.
Have a wonderful time Ronnie-bins!!!!!
'til next time.
Saturday, October 2, 2010
Inspiration and laughter
So since I've started this blog I've been looking at all kinds of articles and blogs that other parents of kids with special needs have written. None so far related to Angelman syndrome but that doesn't matter. I think parents of kids with special needs (or special powers) are a unique family that are weirdly related by their experiences. What strikes me is the positive spin most of the blogs have had. Yes, there are negative moments but when you child has such difficulties it sort of comes with the territory...
Anyway, my point is that a lot of people ask me how I can have such a positive outlook. When I talk about Ronnie, I feel proud and fiercely protective. When I talk about Emma, I feel proud and fiercely protective. Exactly the same. How can I be negative? I have two incredibly wonderful daughters who are brave, intelligent and funny. They may drive me crazy, but they also make me laugh till I pee...
I have come to realize that there are two kinds of people: those that stagnate and those that move forward. If you stagnate you will never be happy but always wonder why you are not. If you can accept your child's disability and incorporate it into your daily life, then you are moving forward - no one gets left behind. If no one gets left behind, how can you be negative?
'til next time.
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| Emma & Mya |
I have come to realize that there are two kinds of people: those that stagnate and those that move forward. If you stagnate you will never be happy but always wonder why you are not. If you can accept your child's disability and incorporate it into your daily life, then you are moving forward - no one gets left behind. If no one gets left behind, how can you be negative?
'til next time.
Saturday, September 25, 2010
Woo Hoo - we finally have a ramp!!
When you get excited about the installation of wheelchair ramp, you realize just how much your life has changed from what you expected it to be.
Seven years ago when Ronnie was first diagnosed, every piece of equipment her PT would bring out would make me cry. The idea of seeing my baby in something that looked like a machine designed to torture my baby was just heartbreaking.
We've now just installed a wheelchair ramp and wow, will it make life a lot easier. Added bonus: Ronnie thinks it is absolutely hysterical. Everyone can now bring her up the ramp not just Brian. Cost of pretty penny but definitely worth it.
'til next time.
Seven years ago when Ronnie was first diagnosed, every piece of equipment her PT would bring out would make me cry. The idea of seeing my baby in something that looked like a machine designed to torture my baby was just heartbreaking.
We've now just installed a wheelchair ramp and wow, will it make life a lot easier. Added bonus: Ronnie thinks it is absolutely hysterical. Everyone can now bring her up the ramp not just Brian. Cost of pretty penny but definitely worth it.
'til next time.
Wednesday, September 15, 2010
Frustration (mine) and incompetence (not mine)
So, we've been on a waiting list for what seems forever to have certain rooms in our house adapted for Veronica. Primarily, the bathroom room needs to be redone to accommodate her. Kid is 9 years old and she still has a small bath seat; the only person who can actually give her a bath is Brian because I certainly don't have the physical strength needed to manhandle her in and out... Ironically, the scale of the project has reduced significantly from its beginnings as Veronica's abilities have increase. That's a good thing.
However we've been actively disagreeing with the occupational therapist and architectural drawer (I'm not sure what she is but she ain't no architect) because we don't agree with their plans. Unrealistic and ridiculously expensive. Anyway, we've just found out that contrary to what we were informed the city's by-laws regarding property distance do not apply to access ramps. This is something they should have known, yes? In fact, we were told in no uncertain terms that we couldn't even apply for a derogation... Apparently they were wrong, again. It is amazing to me that these so-called professionals whom you are trusting to do their jobs just can't be bothered. And when you call them on it, the mistakes are barely acknowledged.
Anyway we've decided to install the handicapped ramp ourselves and have now taken over that aspect of the plan. It will be really interesting to see what kind of work the contractor does. Hopefully it is half decent as he is the one who will likely handle the rest of the work... Scary but I hope it will work out.
I just wish everyone would take their responsibility seriously.
'Til next time...
Thursday, September 9, 2010
Transportation adventures
Despite saying she was not scared (okay only a little bit at first), I can't help remembering a time when I missed my bus stop coming home from Christmas Shopping. I was probably about the same age as Emma but since cell phones didn't exist in those days (shocking as that may seem), there was no way to get in touch with my mum to let her know I was lost. The bus driver took pity on me and drove me home... Seriously, next thing my mum knew there was this giant sized city-bus pulling up in front of our house and me getting off it.
I'm glad everything worked out for the girls and I'm pretty sure they will be paying more attention next time they have to take a different train home from school, but the whole situation made us wonder about other parents and their reactions. None of the parents of the other two girls called us to say thank you for arranging their return, not even to acknowledge that the girls had an adventure. Now, I don't need abject gratitude but a thanks from the other parents would have been nice. Once set of parents was out for dinner and NOT going to pick up their daughter (in fact she walked home from our house; again, my parent saw her by the side of the road and drove her home), and they kid stayed with us for a good 30-45 minutes before he dad showed up to pick her up.... Is it just me? These girls are 12 not 21... they are still kids who got scared and just want to go home... people are weird...
Til next time...
Saturday, September 4, 2010
New Beginnings
So, we've survived our first week back to school. Emma is in grade 7 and Ronnie is up a level from last year because she did so well.
One of the things I really enjoyed about the CASS conference was just talking with other parents. I also found out some information about the IEP so we've already spoken to her teacher about some of the specific goals we want them to work with her this year. We'll see how that goes.
High school - its hard to believe that the little girl I carried in my arms is now in high school. I wish her nothing but joy and happiness. This is a time when kids get to explore everything and anything and discover who and what they are. They re-define their beliefs, their friends and even their parents...High school doesn't have to be miserable so I hope for her that it isn't. Started off okay so hopefully it stays the course.
Til next time...
One of the things I really enjoyed about the CASS conference was just talking with other parents. I also found out some information about the IEP so we've already spoken to her teacher about some of the specific goals we want them to work with her this year. We'll see how that goes.
High school - its hard to believe that the little girl I carried in my arms is now in high school. I wish her nothing but joy and happiness. This is a time when kids get to explore everything and anything and discover who and what they are. They re-define their beliefs, their friends and even their parents...High school doesn't have to be miserable so I hope for her that it isn't. Started off okay so hopefully it stays the course.
Til next time...
Friday, August 27, 2010
Angels
So in my first post I referred to the angelic presence in my life. My youngest child, Veronica (aka Ronnie) was diagnosed with Angelman syndrome just after her 2nd birthday. This is a genetic disorder that leads to a global delay in development. In other words, both her motor skills and her neurological development have moderate to severe delays. She is now 9 years old but is, in a lot of ways, like a 2 year old child. Very dependent on everyone for what we call "activities of daily living".
Don't let the name of the disorder affect your thinking however: she is a very energetic and fun loving kid. She much prefers to play with people than toys and she really loves to interact with others. She can be manipulative and bratty and knows just which buttons to push to get her sister really mad. But she can also be cuddly and sweet and have just the right touch to get your attention. One of her favorite activities is getting to climb into bed with mom and dad on the weekends and just jump around and cuddle and play. Once she gets her cuddle time, she's good for the day..
Having two kids is challenging; throw one in with special needs and you discover just how strong a person you can be. My husband and I have this sort of ongoing conversation: do babies pick their parents or do parents get the kids they need or, third option, is it just fluke? He thinks that the kids choose their parents and I'm not sure. One thing I can say is that having a child with special needs helps you put things in perspective.
I often get people asking me how I can be such a positive person with what we've had to go through. Part of me wants to say: "Well, what do you expect? Am I supposed to be depressed constantly because my child is disabled?" and part of me wants to say "You can't stay miserable forever; that's no way to live". I think I usually end up saying the last one. We both certainly went through the phases and reality is that you do go through a grieving process. This child will not be able to live out the dreams I've imagined for her. That is my heartbreak.
However, you can't stay depressed or angry forever. You need to incorporate it into your life in a way that lets you continue to live while making space for this new challenge. Nothing is insurmountable.
Til next time.
Don't let the name of the disorder affect your thinking however: she is a very energetic and fun loving kid. She much prefers to play with people than toys and she really loves to interact with others. She can be manipulative and bratty and knows just which buttons to push to get her sister really mad. But she can also be cuddly and sweet and have just the right touch to get your attention. One of her favorite activities is getting to climb into bed with mom and dad on the weekends and just jump around and cuddle and play. Once she gets her cuddle time, she's good for the day..
Having two kids is challenging; throw one in with special needs and you discover just how strong a person you can be. My husband and I have this sort of ongoing conversation: do babies pick their parents or do parents get the kids they need or, third option, is it just fluke? He thinks that the kids choose their parents and I'm not sure. One thing I can say is that having a child with special needs helps you put things in perspective.
I often get people asking me how I can be such a positive person with what we've had to go through. Part of me wants to say: "Well, what do you expect? Am I supposed to be depressed constantly because my child is disabled?" and part of me wants to say "You can't stay miserable forever; that's no way to live". I think I usually end up saying the last one. We both certainly went through the phases and reality is that you do go through a grieving process. This child will not be able to live out the dreams I've imagined for her. That is my heartbreak.
However, you can't stay depressed or angry forever. You need to incorporate it into your life in a way that lets you continue to live while making space for this new challenge. Nothing is insurmountable.
Til next time.
Wednesday, August 25, 2010
To be a vegetarian or not to be vegetarian; that is the question
Emma has finally finished her book reports and has returned to humanoid behaviour. This leaves me with not much to complain about (Thankfully) so I think I'll write about food.
My husband became a vegetarian about one year ago following some pretty severe gout attacks. The gout flared up after he followed a pretty strict high protein diet. He managed to loose alot of weight but the OD of proteins left him with gout. After watching this pretty tough guy fight the pain, I wouldn't wish this on my worst enemy.
Anyway, to try to eliminate all these meat-based proteins, he became a vegetarian. Its really suprising how touchy people become when you talk about food and their diet; it is such a sensitive topic. We've been having the vegetarian talk for quite some time before he decided to do it, but in the past I would subtly (or not so subtly) try to sabotage it. This time seems to have stuck however. The good news is that he is no longer in pain. The bad news is that I have to eat more tofu than I really want to. Thankfully not very often but I'm not a huge fan of tofu...
So here we are with my husband and Ronnie (my youngest) being vegetarians and Emma and myself being staunch carnivores. Thank God for BBQ season - we all get to eat what we want....
Til next time.
My husband became a vegetarian about one year ago following some pretty severe gout attacks. The gout flared up after he followed a pretty strict high protein diet. He managed to loose alot of weight but the OD of proteins left him with gout. After watching this pretty tough guy fight the pain, I wouldn't wish this on my worst enemy.
Anyway, to try to eliminate all these meat-based proteins, he became a vegetarian. Its really suprising how touchy people become when you talk about food and their diet; it is such a sensitive topic. We've been having the vegetarian talk for quite some time before he decided to do it, but in the past I would subtly (or not so subtly) try to sabotage it. This time seems to have stuck however. The good news is that he is no longer in pain. The bad news is that I have to eat more tofu than I really want to. Thankfully not very often but I'm not a huge fan of tofu...So here we are with my husband and Ronnie (my youngest) being vegetarians and Emma and myself being staunch carnivores. Thank God for BBQ season - we all get to eat what we want....
Til next time.
Sunday, August 22, 2010
High School jitters
So, here we are one week after my last post, and we are in the same situation again. This is so not working for me! This time it was about school and her period. Weird combo I know but...
School: I'm not quite sure where, when or how, but Emma has decided that as the so-called smart kid she is not allowed to have too much fun. Most of the kids she knew in elementary school that were popular where not very academic (according to her) and she had a really bad experience with them. She was put down alot and because she was afraid to not have friends, she put up with it for a long time before she finally decided she had had enough. She was cyber-bullied before grade 6 started and that pretty much put an end to her friendship with the idiots...Now, I am very proud that she made the decision to cut ties with these particular people but it has left her with a coloured perception. Rather than get to know people she has just decided that people suck and are therefore not worth knowing. She had a math test to take for high school and she said she was looking at people and has already decided who the cool kids are, who the geeks are.... I am so worried that she will have a horrible experience and it will be her fault completely!!!! High School is tough enough with friends; I can't imagine what it would be like without...
Ugh... this is such a negative post and I'm really not a negative person... I just hope she learns to give people a chance. She is so busy trying to be who she thinks people think she is that she has no idea who she is. (can you figure it out?:):):)
Period: one extended sentence should explain it: "I have cramps";" take an Advil"; "no it is a drug, I'll just deal with the pain"; "fine then, suffer but don't take it out on the rest of us..."; "but I don't feel well..." Over and over and over...
Was I this stubborn as a kid???
Til next time.
School: I'm not quite sure where, when or how, but Emma has decided that as the so-called smart kid she is not allowed to have too much fun. Most of the kids she knew in elementary school that were popular where not very academic (according to her) and she had a really bad experience with them. She was put down alot and because she was afraid to not have friends, she put up with it for a long time before she finally decided she had had enough. She was cyber-bullied before grade 6 started and that pretty much put an end to her friendship with the idiots...Now, I am very proud that she made the decision to cut ties with these particular people but it has left her with a coloured perception. Rather than get to know people she has just decided that people suck and are therefore not worth knowing. She had a math test to take for high school and she said she was looking at people and has already decided who the cool kids are, who the geeks are.... I am so worried that she will have a horrible experience and it will be her fault completely!!!! High School is tough enough with friends; I can't imagine what it would be like without...
Ugh... this is such a negative post and I'm really not a negative person... I just hope she learns to give people a chance. She is so busy trying to be who she thinks people think she is that she has no idea who she is. (can you figure it out?:):):)
Period: one extended sentence should explain it: "I have cramps";" take an Advil"; "no it is a drug, I'll just deal with the pain"; "fine then, suffer but don't take it out on the rest of us..."; "but I don't feel well..." Over and over and over...
Was I this stubborn as a kid???
Til next time.
Monday, August 16, 2010
Pre-teen challenges - part deux
So we finally made it to the Matsuri Festival, which was nothing to sneeze at unfortunately, and despite the rocky start, we ended up having a fairly decent family-day. Emma even admitted that she was glad she didn't wear black - she would have been too hot. Score 1 point for mom & dad.
Unfortunately, we ended up having the same argument the next day; loose 1 point for mom & dad... Thank God we won't have to go through this stuff twice. We may have our challenges with Ronnie but at least she doesn't disagree with what we want her to wear. We just have to fight her into her clothes... I swear, dressing Ronnie is an extreme sport on some days. Fun but then everyone starts to sweat and she just laughs....
So after my first post, I ended up thinking about vegetarianism and realized that tho BBQ season is great for the carnivores in our house it is not so great for the herbivores. Brian and Ronnie end up eating soya sausauges or vege burgers most of the time while we eat a good meal. I do worry that they aren't getting the proper nutrition/vitamin quotient (even tho they are taking multi-vitamins). The good news is that Brian has not had a relapse of his gout since he turned herbivore. What to do, what to do, what to do...
Til next time.
Unfortunately, we ended up having the same argument the next day; loose 1 point for mom & dad... Thank God we won't have to go through this stuff twice. We may have our challenges with Ronnie but at least she doesn't disagree with what we want her to wear. We just have to fight her into her clothes... I swear, dressing Ronnie is an extreme sport on some days. Fun but then everyone starts to sweat and she just laughs....
So after my first post, I ended up thinking about vegetarianism and realized that tho BBQ season is great for the carnivores in our house it is not so great for the herbivores. Brian and Ronnie end up eating soya sausauges or vege burgers most of the time while we eat a good meal. I do worry that they aren't getting the proper nutrition/vitamin quotient (even tho they are taking multi-vitamins). The good news is that Brian has not had a relapse of his gout since he turned herbivore. What to do, what to do, what to do...
Til next time.
Saturday, August 14, 2010
Pre-teen challenges
Saturday morning and here we go, again. Instead of having a nice family day out at the Festival Japonais, we are now faced with the choice of dragging our pre-teen with us (where she will be miserable for the rest of day) or leaving her at home (where we won't have to deal with her misery but she will think she's won whatever quirky little battle of wills she's engaged in).
Sometimes I just don't know what to do or how to respond. Do we ignore or do we engage?
So now, we are all in our respective corners trying not to engage so we don't make things worse... In the meantime, she's still dressed like Nanuk of the North when it is 30 degrees outside. I get that it is a control issue, but sometimes I just wish she'd understand that we are not trying to run her life. Sometimes we actually know what we are talking about!!!
Til next time.
Sometimes I just don't know what to do or how to respond. Do we ignore or do we engage?
So now, we are all in our respective corners trying not to engage so we don't make things worse... In the meantime, she's still dressed like Nanuk of the North when it is 30 degrees outside. I get that it is a control issue, but sometimes I just wish she'd understand that we are not trying to run her life. Sometimes we actually know what we are talking about!!!
Til next time.
Thursday, August 12, 2010
My first post
I think I'm feeling jealous of the time my hubby spends on the web searching and reading various Zen blogs... I supposed it is kind of petty to be jealous of time spent trying to find inner peace, but, there you have it. Not one of my prouder moments....
I've been wanting to start a blog/diary/journal to chart the family adventures for quite some time now. Not that my family is more interesting than anyone else's but we have had some adventures that others perhpas have not shared. For example, I have an angel in my life that is very special to me. I'm not talking about an angel-with-wings-angel but a child with Angelman syndrome. My youngest daughter is nine years old and was diagnosed with this genetic disorder just after her second birthday (more details on this to come).
I also have a twelve year old pre-teen daughter who is refusing to wear any colour but black; not because she feels black on the inside but, well, I haven't quite figure out why yet. She's about to start high school and although a great kid, she can be a tad challenging (as all kids can be).
As mentioned above I also have a wonderful husband who is trying to navigate his way to Buddhism in a house where religion is not taken very seriously and where I sort of zone out after a bit. But I'm trying to be supportive which is a good thing.
I also have a mixed beagle-cocker spaniel dog with special needs. She has seizures which can be tad frightening is you've never seen anyone never mind a dog have a seizure.
Anyway, I have to go back to work but I hope to use this blog to talk about family, life, dogs and food. Yes my hubby is a vegetarian and I am not... actually we are split 50/50 with me and the pre-teen being carnivorous and my hubby and Angel being herbivores...
Til next time...
I've been wanting to start a blog/diary/journal to chart the family adventures for quite some time now. Not that my family is more interesting than anyone else's but we have had some adventures that others perhpas have not shared. For example, I have an angel in my life that is very special to me. I'm not talking about an angel-with-wings-angel but a child with Angelman syndrome. My youngest daughter is nine years old and was diagnosed with this genetic disorder just after her second birthday (more details on this to come).
I also have a twelve year old pre-teen daughter who is refusing to wear any colour but black; not because she feels black on the inside but, well, I haven't quite figure out why yet. She's about to start high school and although a great kid, she can be a tad challenging (as all kids can be).
As mentioned above I also have a wonderful husband who is trying to navigate his way to Buddhism in a house where religion is not taken very seriously and where I sort of zone out after a bit. But I'm trying to be supportive which is a good thing.
I also have a mixed beagle-cocker spaniel dog with special needs. She has seizures which can be tad frightening is you've never seen anyone never mind a dog have a seizure.
Anyway, I have to go back to work but I hope to use this blog to talk about family, life, dogs and food. Yes my hubby is a vegetarian and I am not... actually we are split 50/50 with me and the pre-teen being carnivorous and my hubby and Angel being herbivores...
Til next time...
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