Yesterday I cried.
Yesterday was Canada Day. The day was filled with lots of things to do and the girls were excited from sunup to sundown. They knew it was a special day and Winnie hounded me to go from the time she opened her eyes. "Momma, I need clothes! We're going to the fair!" Yes, the full sentences, appropriate context and excited... normalness that I so enjoy! It was wonderful to hear, even at 6:30 am.
As we got ready and piled into the van, we went over and over our plans for the day "We're going to go watch the parade, then go get lunch, then go to the fair, then go to Grandma’s for cake, then go home, okay? Everyone understand?" This could not be repeated enough. This repetition may save the day. Preparation is essential, for us and for them.
Arriving at the parade route, we picked a spot on the grass, thankful that we’d found a good spot where the girls could see – the last parade we went to was very crowded. We laid a blanket out and they sat on it, getting up to run in the large grassy area behind us, Grandma and Momma at the ready to run and pounce if things started out of control.
And then the bands came. The girls sat wonderfully on the blanket and watched the entire parade, Maggie needing a break only once during a lull to roll and twirl, then coming back for the remainder of the parade. They tried very hard to remember to wave and say “Happy Canada Day” to the passers by, and accept the candies, flags and other objects given to them by the parade folk with a quiet and awed “Thank you” if they remembered. They tried so hard, and enjoyed it so much. The parade was a success!
Heading back towards the van, my heart stopped as Maggie and Winnie took off towards the van, relief consumed as they stopped at the van, then dread once more as the time it took to open the van was slightly too much, they ran into the busy parking lot. Dropping everything I ran to corral them, shuffled them into the van, buckled them in, and then sagged into the front seat and closed my eyes as relief once again washed through me. Breathe. In. Out. Breathe.
Lunch was much as it is every time. “Chicken in a bag” which sometimes actually comes in a bag, sometimes in a box, sometimes all together in one giant bag… luckily that’s not such a concern now as it used to be. Switching up a kid’s expected lunch from a box, to a bag, to no container at all might not matter for most kids, but for mine, it could be catastrophic, causing a meltdown of epic proportions. They just want what is expected. They want things the same each time. So they know what’s coming. They need that, but they need to learn to that some things they can’t expect, and thankfully our trips to McDonald’s weekly has helped them to understand that some things might not be exactly the same each time, and that its ok. Right now though, that only applies to McDonalds… the trick now is to stretch that to other things, ‘generalize’ the professionals call it, and we’re slowly doing that.
Next was off to the fair, blaring various tunes that Winnie gets to dictate along the way “Can I hear YMCH?... love don’t cost?... Rockstar?... We like to party?” Thankfully if you keep clicking ‘next’ she can tell you the exact one she wants, within the first two seconds of the song she knows if it’s right. They’re hard to figure out sometimes as the names she calls them are simply some of the lyrics, and perhaps not the correct lyrics, but she’ll sing a bit to help you figure it out. She’s good like that – she understanding that you might not understand her, and she doesn’t get as upset as she used to when you don’t understand what she wants at first. We’re all learning patience.
My mom, the savior, had tickets already for the fair. The girls waited as patiently as they could in line for the first ride, picking out the ponies that they wanted on the carousel. Maggie looked all around her, bewildered at all the sights and sounds, the colours and motion, her head swiveling around to take it all in, her attention constantly caught by things we don’t notice – like the colours twirling above our heads. More than once she forgot herself and let go of the horse, leaning back to look up, her eyes blinking as she tried to process the things around her. I have never been more thankful that I was there with her, my hand on her back ensuring she didn’t fall off, my voice by her ear reminding her to hold on, bringing her back to us, asking her questions about what she saw so that she just wasn’t in this by herself, in her own world.
More rides – Winnie came with an agenda – Ferris wheel, roller coaster and games were on her list. Grandma also came with a plan – rides first, then games, then take some candy to go home. If we did them all mixed up together, how would they know when it ended? They wouldn’t. Hopefully this plan would work.
Mom and Grandma standing close by and watching as the rides moved, ready to spring when they stopped. Carnies, not quite understanding why the Maggie doesn’t follow directions (or even notice that they’re there), stand by and chuckle, until we say “She has autism and doesn’t understand you.” They step aside so that one of us can skip in and get her attention, hold her hand and walk her out.
Winnie gets upset that her favorite toy and friend can’t come on the rides with her, her disgusted face and folded arms last only until the rides starts to move. Then the smile that I love lights her face as she grips the steering wheel with vice-like fingers until the ride stops.
More at ease as the day continues, Winnie starts chatting up the girls and boys around her, trying her best to make conversation. They seem to be responding to her and she smiles, happy to be able to talk to them, even a little. Just before we leave, she sees a classmate and stops to say hello, Grandma is bewildered at first, until Winnie politely introduces “This is my friend Purity from lower Lincoln. This is my grandma”. Grandma turns to me and beams happily “That’s Winnie’s friend Purity” she announces proudly.
Maggie and Winnie try their hand at popping balloons. 3 darts each, Winnie gets two! Hooray! Maggie tries one and falls short, Momma takes the second and pops one to ensure she’ll get a prize, Maggie tries the third after a bit of instruction, but still falls a bit short. The girl hands her a piggy which she grips happily, hugging and cooing at her new friend. Tucked under her arm, she comes away happily as we head for our last stop, cotton candy.
Momma and Grandma hold their breath we begin to leave the fairgrounds, our minds on last year. This was where the tantrums started. The long walk back to the car is met with success, excited girls talking about the fun they had, the rides, the colours, the candy… they had a good day. Snapping them into the car seats, momma once again sinks into her seat, and the silent tears of thanks prick her eyes.
Heading to Grandma’s for a bit, we have some cake and things start to break down a bit. To be expected, it was a long day and they have reached their point. The running, the crying, the hitting has started. The entire car ride home from grandma’s is filled with screaming meltdowns by both parties. We get them into the fenced in yard with complaints and screams.
A distraction helps, they sit down, still agitated, to watch a new movie. Calming down, they slowly fall asleep, bundled up together in a pile on the couch. The long day was fun, exhausting, overwhelming and awesome. Momma sits again and cries quietly, happy for the day, sad for the meltdowns, thankful that progress is being made.
Happy Canada Day.
Saturday, July 2, 2011
Wednesday, March 16, 2011
A little bit of history
In honour of St Patrick's day, I'm sharing the story of one of my links to Ireland - my great, great, great, great grandfather, John Johnston and his emigration to Canada.
Born about 1815 or 1817 in Ireland, John Johnston grew up likely on a 7 acre tenant-farm in the township of Drummal, near Castle Archdale in the parish of Derryvullen (Irvinestown) in the county of Fermanagh, Ireland with his father John, mother Catherine and his three older siblings, Elizabeth (b. approx 1811) Thomas (b. approx 1813) and Mathew (b. approx 1815), and one younger brother, Edward (b. approx 1820).
(image of an example house from the area and time – borrowed from another blogspot blog)
John grew up and married a woman named Sarah HUNTER (Church of Ireland Marriage License) in 1838 when he was about 20. He also was a farmer, likely on a plot on his father’s tenant-farmland. They started having children immediately, registering them in Derryvullen. By the time the Great Potato famine hit in 1845, they had Thomas (1837), William (1839), Catherine (1841), Margaret (1843) and were expecting baby Mary (1846). One can only imagine the plight of a rural farmer in Northern Ireland at this time with 5 children and a pregnant wife dependant on them.
1847 in Ireland was the height of the Great Famine, being referred to as the Black ’47. Starting in the first of the year, the suggestion to emigrate to “The Northern Colonies” was promoted in Ireland as a relief measure to the starving population and by June, John Johnston and his young family are among the 1 million families that would make the desperate voyage to North America. John secured passage for himself, his wife, his mother and 5 children from ages 6 months to 10 years on the brig “Progress” out of Londonderry – about 55 miles away or what would be about an hour and a half drive today over rocky, mountainous terrain of Northern Ireland.
(An example of a brig from this time - borrowed from here)
The Progress carried 138 passengers for 48 days and arrived in Saint John, New Brunswick, Canada on June 5, 1847 with 5 dead. The passengers progressed through the Partridge Island quarantine facility, but it’s currently unknown how long they stayed there, if any passengers were diseased or ill and if any perished after landing at the facility. It is likely a rather uneventful voyage as there is very little record of it. The luck of the Irish was with this particular vessel and family in the trying times of famine and disease.
We can find little about this family until we see John and Sarah in the 1861 census. They have made it up the Saint John River about 70 KM to Hampstead, New Brunswick (which would be about an hour drive today) and are farmers in the community. 15 years after the famine, John, now about 45 years old, lists only his wife and two oldest sons, Thomas and William, as living with them. William is listed as 20 years old and still attending school, while Thomas is cited as being deaf, dumb and idiotic or mentally incapable. This year Margaret married James Donald, being 18 years or slightly younger. The oldest daughter Catherine, and two youngest, Mary and Jane, are not present in this census. Mary and Jane are both found at a later date, but Catherine is still missing. Its unclear where Mary and Jane are, but its clear that they’re not living at home. Perhaps they are in a neighboring farm, assisting and learning with the farm’s matrons.
In 1871, we find William married with his own children, but also still responsible for his older brother Thomas and his two youngest sisters, all listed as living with him in the 1871 census. The family appears to be close knit throughout their lives.
I will continue researching this particular branch of my family, but I thought due to the holiday I'd share what I had discovered so far. Enjoy! (if you'd like to know my research sources etc, please drop me a line and I'd be happy to share).
Born about 1815 or 1817 in Ireland, John Johnston grew up likely on a 7 acre tenant-farm in the township of Drummal, near Castle Archdale in the parish of Derryvullen (Irvinestown) in the county of Fermanagh, Ireland with his father John, mother Catherine and his three older siblings, Elizabeth (b. approx 1811) Thomas (b. approx 1813) and Mathew (b. approx 1815), and one younger brother, Edward (b. approx 1820).
(image of an example house from the area and time – borrowed from another blogspot blog)
John grew up and married a woman named Sarah HUNTER (Church of Ireland Marriage License) in 1838 when he was about 20. He also was a farmer, likely on a plot on his father’s tenant-farmland. They started having children immediately, registering them in Derryvullen. By the time the Great Potato famine hit in 1845, they had Thomas (1837), William (1839), Catherine (1841), Margaret (1843) and were expecting baby Mary (1846). One can only imagine the plight of a rural farmer in Northern Ireland at this time with 5 children and a pregnant wife dependant on them.
1847 in Ireland was the height of the Great Famine, being referred to as the Black ’47. Starting in the first of the year, the suggestion to emigrate to “The Northern Colonies” was promoted in Ireland as a relief measure to the starving population and by June, John Johnston and his young family are among the 1 million families that would make the desperate voyage to North America. John secured passage for himself, his wife, his mother and 5 children from ages 6 months to 10 years on the brig “Progress” out of Londonderry – about 55 miles away or what would be about an hour and a half drive today over rocky, mountainous terrain of Northern Ireland.
(An example of a brig from this time - borrowed from here)
The Progress carried 138 passengers for 48 days and arrived in Saint John, New Brunswick, Canada on June 5, 1847 with 5 dead. The passengers progressed through the Partridge Island quarantine facility, but it’s currently unknown how long they stayed there, if any passengers were diseased or ill and if any perished after landing at the facility. It is likely a rather uneventful voyage as there is very little record of it. The luck of the Irish was with this particular vessel and family in the trying times of famine and disease.
We can find little about this family until we see John and Sarah in the 1861 census. They have made it up the Saint John River about 70 KM to Hampstead, New Brunswick (which would be about an hour drive today) and are farmers in the community. 15 years after the famine, John, now about 45 years old, lists only his wife and two oldest sons, Thomas and William, as living with them. William is listed as 20 years old and still attending school, while Thomas is cited as being deaf, dumb and idiotic or mentally incapable. This year Margaret married James Donald, being 18 years or slightly younger. The oldest daughter Catherine, and two youngest, Mary and Jane, are not present in this census. Mary and Jane are both found at a later date, but Catherine is still missing. Its unclear where Mary and Jane are, but its clear that they’re not living at home. Perhaps they are in a neighboring farm, assisting and learning with the farm’s matrons.
In 1871, we find William married with his own children, but also still responsible for his older brother Thomas and his two youngest sisters, all listed as living with him in the 1871 census. The family appears to be close knit throughout their lives.
I will continue researching this particular branch of my family, but I thought due to the holiday I'd share what I had discovered so far. Enjoy! (if you'd like to know my research sources etc, please drop me a line and I'd be happy to share).
Tuesday, November 30, 2010
Don't brush them under the rug!
I am shocked, surprised and saddened to learn how "Special Needs" children are really dealt with in the New Brunswick school system. I had no idea that the policy on special needs was basically "shove them under the rug but make it look good while we do it". It makes me wonder how many people out there have voiced the same opinion as me, only to be completely ignored with "Well.. its all we have..." or "Its all we can do...".
No, it really isn't all you can do. For instance - why do children on the Special Needs busses arrive at their school so late? Sometimes more than an hour after school actually starts. Using my daughter's class as an example, her teacher specified at the first of the year that the majority of her daily teaching was finished by 9:15am. The rest of the work is group or individual based on the teachings from that first half hour. Winnie's bus did not even get there some days until 9:15. The excuse being apparently is that busses only start at 7:30am and it takes so long to do the special needs runs that they can't possibly get there any earlier. Hmm.. lets see... if I had to be somewhere for the start of soemthing... wouldn't I just leave earlier? If you're a special needs bus driver, aren't you already signing on to a little extra? Wouldn't it be more worth while for the children to actually learn something at school as opposed to simply showing up, and late at that?
Once they get to school, their learning plans are so modified from the average student that they can't possibly be on their own, and are not expected to learn as much as what the other children know. While kudos to the system for putting in place these wonderful plans that accomodate to the student's disabilities, I think "dumbing down" the curriculum instead of ensuring they understand it on a level with everyone else, is a little hard to handle - especially with kids on the autism spectrum. These kids are not dumb, they simply learn differently. To expect them to take an oral test, and then only give them 40% of the requirements of everyone else, is a little excessive. One method or the other would likely do just fine. Using them together is overkill. Don't push them along because you don't have the time and resources to teach them properly.
And that is the icing on the cake - the lack of resources. When Winnie started school this year, it was deemed that she needed one-on-one support - her own Teacher's Aide. THis was approved by the schoolboard and she received this. However, now that we're heading back to school after a 2 week break, her TA is no longer available. She's been pulled and sent to another school. "Not to worry!" they say - they've switched around everyone's schedules so that Winnie now gets 2 hours a day one on one and the rest of the time she shares her TA with another boy. Out of her 5 hours previously, she now gets 2 and the teacher herself expressed concern that Winnie would be falling behind due to lack of support. I'm wondering how I'm supposed to be happy with that downshift, when Winnie needs all the help she can get. When questioned, the school said their hands were tied, and basically told me I should not persue it because the verdict has been handed down from the Head of the District.
To help me try to feel better about this turn of events, the resource teacher decides to tell me that it wasn't just Winnie who had her services cut. There are children who need TAs who don't even have assistance in the classroom. Non-verbal autistic children are integrated into a regular classroom with no one-on-one assistance, or any assistance at all. Why? Apparently simply due to budget cuts.
I'm now wondering what else was cut, and where did the money go? Why is it that the children who need the "extra" the most, are the ones who got cut? Does the province just deem these children a lost cause? If that's the case, they need a wakeup call. These children are not a lost cause, in fact they may become some of the most amazing individuals you have the pleasure of meeting - if we help them through the rough road to get them there.
It is indeed time for your wakeup call New Brunswick education system. *ring ring ring*...
No, it really isn't all you can do. For instance - why do children on the Special Needs busses arrive at their school so late? Sometimes more than an hour after school actually starts. Using my daughter's class as an example, her teacher specified at the first of the year that the majority of her daily teaching was finished by 9:15am. The rest of the work is group or individual based on the teachings from that first half hour. Winnie's bus did not even get there some days until 9:15. The excuse being apparently is that busses only start at 7:30am and it takes so long to do the special needs runs that they can't possibly get there any earlier. Hmm.. lets see... if I had to be somewhere for the start of soemthing... wouldn't I just leave earlier? If you're a special needs bus driver, aren't you already signing on to a little extra? Wouldn't it be more worth while for the children to actually learn something at school as opposed to simply showing up, and late at that?
Once they get to school, their learning plans are so modified from the average student that they can't possibly be on their own, and are not expected to learn as much as what the other children know. While kudos to the system for putting in place these wonderful plans that accomodate to the student's disabilities, I think "dumbing down" the curriculum instead of ensuring they understand it on a level with everyone else, is a little hard to handle - especially with kids on the autism spectrum. These kids are not dumb, they simply learn differently. To expect them to take an oral test, and then only give them 40% of the requirements of everyone else, is a little excessive. One method or the other would likely do just fine. Using them together is overkill. Don't push them along because you don't have the time and resources to teach them properly.
And that is the icing on the cake - the lack of resources. When Winnie started school this year, it was deemed that she needed one-on-one support - her own Teacher's Aide. THis was approved by the schoolboard and she received this. However, now that we're heading back to school after a 2 week break, her TA is no longer available. She's been pulled and sent to another school. "Not to worry!" they say - they've switched around everyone's schedules so that Winnie now gets 2 hours a day one on one and the rest of the time she shares her TA with another boy. Out of her 5 hours previously, she now gets 2 and the teacher herself expressed concern that Winnie would be falling behind due to lack of support. I'm wondering how I'm supposed to be happy with that downshift, when Winnie needs all the help she can get. When questioned, the school said their hands were tied, and basically told me I should not persue it because the verdict has been handed down from the Head of the District.
To help me try to feel better about this turn of events, the resource teacher decides to tell me that it wasn't just Winnie who had her services cut. There are children who need TAs who don't even have assistance in the classroom. Non-verbal autistic children are integrated into a regular classroom with no one-on-one assistance, or any assistance at all. Why? Apparently simply due to budget cuts.
I'm now wondering what else was cut, and where did the money go? Why is it that the children who need the "extra" the most, are the ones who got cut? Does the province just deem these children a lost cause? If that's the case, they need a wakeup call. These children are not a lost cause, in fact they may become some of the most amazing individuals you have the pleasure of meeting - if we help them through the rough road to get them there.
It is indeed time for your wakeup call New Brunswick education system. *ring ring ring*...
Sunday, October 17, 2010
Halloween Pumpkins - the week long activity
It occurred to me today, as I was carving out my very first pumpkin with my little ones, that for a normal household, this activity would probably be a one evening activity, that lasts maybe a few hours. For us, its a week-long activity that looks something like this:
Day 1 and 2: Talk about pumpkins, picking out pumpkins, look at pictures of pumpkins, talk about decorating them and draw some. Pick out pumpkins while driving etc..Locate a small shop/greenhouse/local store that is quiet, away from the road, and sells pumpkins (Sometimes this is harder than it sounds)Let the kids know that this year they'll be getting pumpkins to decorate. Give them a good heads up about what is expected, and what it will be like.
Day 3: Take girls to pick out pumpkins - expect to stay a while. Also expect crazy excitement, lots changed minds about pumpkin picking decisions, for people to stare, for your nerves to be shot and for your "Momma-cam" hawkeyedness to be in full effect. Let the girls know that they will be decorating the pumpkins, but not today. Trust me, you've all had enough excitement for one day, and if you take the time to tell them (again and again), it will be ok with them because they'll still get to decorate them in the foreseeable future.
Day 4: Carve the first pumpkin - let them pick out the design, help them poke the little dots into the pumpkin skin to cut it out, dig out the guts of the pumpkin etc. When finished, let them know that you'll carve the next pumpkin tomorrow.
Day 5: Repeat day 4 with pumpkin 2.
Day 6: Have them draw THE PUMPKINS THEY MADE.
Day 7: Light the pumpkins for them to see. Go over safety with pumpkins, no touching, walking by, playing with etc.. Take pictures of the great pumpkins and the wonderful kids who made them.
So as you can see, it can be easily done - but you may ask "Why doesn't she just give them the damn pumpkins and have them carved and everything all at once?! It would save time!!" - Indeed, it would. But if I did it all at once with my kids, who get overload at most of the things we consider "simple" - like going to the store, getting on the bus or being asked to two things at the same time - doing our "pumpkin thing" all in one go, would likely overload them, and not be enjoyable for them or me. Its interesting the things you find you're considering and thinking through more thoroughly when your kids enjoyment of "simple" tasks depends upon your abilities to judge their tolerance to sensory overload.
On a completely different note, Winnie has decided to be the impossible costume of the year.. has anyone ever seen BAT WINGS anywhere? I see fairy wings of all shapes and sizes.. but no pointy bat wings anywhere... I may have to make some from cardboard and string... Ah, the things I never knew I was capeable of until I had children. For instance, now, I'm crafty! (Not really "am" - more of "can be" really..) Necessity is certainly the mother of all invention!
Day 1 and 2: Talk about pumpkins, picking out pumpkins, look at pictures of pumpkins, talk about decorating them and draw some. Pick out pumpkins while driving etc..Locate a small shop/greenhouse/local store that is quiet, away from the road, and sells pumpkins (Sometimes this is harder than it sounds)Let the kids know that this year they'll be getting pumpkins to decorate. Give them a good heads up about what is expected, and what it will be like.
Day 3: Take girls to pick out pumpkins - expect to stay a while. Also expect crazy excitement, lots changed minds about pumpkin picking decisions, for people to stare, for your nerves to be shot and for your "Momma-cam" hawkeyedness to be in full effect. Let the girls know that they will be decorating the pumpkins, but not today. Trust me, you've all had enough excitement for one day, and if you take the time to tell them (again and again), it will be ok with them because they'll still get to decorate them in the foreseeable future.
Day 4: Carve the first pumpkin - let them pick out the design, help them poke the little dots into the pumpkin skin to cut it out, dig out the guts of the pumpkin etc. When finished, let them know that you'll carve the next pumpkin tomorrow.
Day 5: Repeat day 4 with pumpkin 2.
Day 6: Have them draw THE PUMPKINS THEY MADE.
Day 7: Light the pumpkins for them to see. Go over safety with pumpkins, no touching, walking by, playing with etc.. Take pictures of the great pumpkins and the wonderful kids who made them.
So as you can see, it can be easily done - but you may ask "Why doesn't she just give them the damn pumpkins and have them carved and everything all at once?! It would save time!!" - Indeed, it would. But if I did it all at once with my kids, who get overload at most of the things we consider "simple" - like going to the store, getting on the bus or being asked to two things at the same time - doing our "pumpkin thing" all in one go, would likely overload them, and not be enjoyable for them or me. Its interesting the things you find you're considering and thinking through more thoroughly when your kids enjoyment of "simple" tasks depends upon your abilities to judge their tolerance to sensory overload.
On a completely different note, Winnie has decided to be the impossible costume of the year.. has anyone ever seen BAT WINGS anywhere? I see fairy wings of all shapes and sizes.. but no pointy bat wings anywhere... I may have to make some from cardboard and string... Ah, the things I never knew I was capeable of until I had children. For instance, now, I'm crafty! (Not really "am" - more of "can be" really..) Necessity is certainly the mother of all invention!
Thursday, October 7, 2010
The holiday check in
The holiday weekend is upon us and I find myself looking at my girls with more joy, more understanding and more.. well.. giggles. They are little girls after all!
Winnie is enjoying school, although I have to drive her now as the special needs bus (the safest way for her to get to school) arrives at her school at about 9:15, when school starts at 8:35. This means that she actually misses a good deal of her schooling. We put her on the bus originally so that she would get the experience of the trip, although still within the safety of having an aid with her. Unfortunately, the bus being so late is completely unacceptable. To circumvent this, and still allow Winnie the opportunity of the bus experience, I now drive her to school in the morning, and she takes the bus home. So far, its working out well.
Her TA communicates with me through a notebook that she sends home with Winnie every day, although mostly the entries are "Winnie had a good day today, we painted with potato cut-outs." or something similarly vague. Of course, she is busy, I'm just used to knowing more. Winnie is getting better at telling me what her day is like though, or maybe I'm just getting better at deciphering her slightly erratic attempts at conversation. I think perhaps its a little of both.
Maggie is turning out to be a fashion diva. I dress her, and then she "completes the outfit" every day. A funky hat, some interesting shoes, beaded necklaces or, if nothing else, a princess crown purse made from fuzzy material, bright pink with purple fluff edging. Her compliance has come way up though, and I'm trying to shape her away from getting up at 4 and 5am every day. Today she slept in until 6ish, so I call that a win so far.
I did notice a post on www.circleofmoms.com asking about what books people would recommend for help with autistic kids, and I have a pretty good library right now. All of which are very helpful to me in their own way - MOST of which can be found in Fredericton at Chapters in the Regent Mall or Westminster Books on King Street. (A lot of them may also be available on loan from the Autism Connections Centre on the Lincoln Road).
My recommendations:
- Ten Things Every Child with Autism Wishes You Knew - by Ellen Notbohm
- The Way I See It by Temple Grandin
- Steps to Independence: Teaching Everyday Skills to Children With Special Needs by Bruce L. Baker and Alan J. Brightman
- The Autism Mom's Survival Guide by Susan Senator
- Early Intervention Games by Barbara Sher
I have LOADS of other books, but I find these are the ones I come back to again and again to help me cope, learn and get ideas for helping my kids discover and learn about the world around them. Hope this helps!
Have a great holiday weekend everyone! I'm sure we all can find things to be thankful for this year!
Winnie is enjoying school, although I have to drive her now as the special needs bus (the safest way for her to get to school) arrives at her school at about 9:15, when school starts at 8:35. This means that she actually misses a good deal of her schooling. We put her on the bus originally so that she would get the experience of the trip, although still within the safety of having an aid with her. Unfortunately, the bus being so late is completely unacceptable. To circumvent this, and still allow Winnie the opportunity of the bus experience, I now drive her to school in the morning, and she takes the bus home. So far, its working out well.
Her TA communicates with me through a notebook that she sends home with Winnie every day, although mostly the entries are "Winnie had a good day today, we painted with potato cut-outs." or something similarly vague. Of course, she is busy, I'm just used to knowing more. Winnie is getting better at telling me what her day is like though, or maybe I'm just getting better at deciphering her slightly erratic attempts at conversation. I think perhaps its a little of both.
Maggie is turning out to be a fashion diva. I dress her, and then she "completes the outfit" every day. A funky hat, some interesting shoes, beaded necklaces or, if nothing else, a princess crown purse made from fuzzy material, bright pink with purple fluff edging. Her compliance has come way up though, and I'm trying to shape her away from getting up at 4 and 5am every day. Today she slept in until 6ish, so I call that a win so far.
I did notice a post on www.circleofmoms.com asking about what books people would recommend for help with autistic kids, and I have a pretty good library right now. All of which are very helpful to me in their own way - MOST of which can be found in Fredericton at Chapters in the Regent Mall or Westminster Books on King Street. (A lot of them may also be available on loan from the Autism Connections Centre on the Lincoln Road).
My recommendations:
- Ten Things Every Child with Autism Wishes You Knew - by Ellen Notbohm
- The Way I See It by Temple Grandin
- Steps to Independence: Teaching Everyday Skills to Children With Special Needs by Bruce L. Baker and Alan J. Brightman
- The Autism Mom's Survival Guide by Susan Senator
- Early Intervention Games by Barbara Sher
I have LOADS of other books, but I find these are the ones I come back to again and again to help me cope, learn and get ideas for helping my kids discover and learn about the world around them. Hope this helps!
Have a great holiday weekend everyone! I'm sure we all can find things to be thankful for this year!
Friday, August 27, 2010
The Thief of Understanding
Yesterday was a sad day. Exciting, for sure, but sad.
Exciting, because it was Winnie's last "Normal" full day at the Autism Intervention Centre. She starts kindergarten the week after next. She is VERY excited about it, as are the rest of us.
The sad thing about today is that for two of Winnie's ASW's, it was their last day with her. They were very sad to leave her. I can't blame them, they worked so hard with her and the changes in Winnie are amazing.
One of her workers has been with her since the beginning of her therapy and the other has been with her for just the summer. I am sad to know they will not be with Winnie any longer.
The extra sad thing was at the very end of the day. Her worker looked as though she was having a hard time saying goodbye. She shuffled her feet a bit and said bye a few times, she wished Winnie well at school and said that she had fun playing with her this summer. Winnie was her normal smiling self, she said bye like she was taught to and hopped into the car. The girl looked at me and shyly said "Do you think she understands... you know.. that I won't be with her again?"
I looked at her, a comforting smile on my face and replied honestly "No, unfortunately, I don't think she understands that you won't be here next time.."
Saddened, the girl said "Oh, well... I had fun with her, and it was so nice to meet you. Winnie has come so far.." and we continued to chat a few moments before she dragged herself away. I turned to Winnie, who had buckled herself in her carseat and was patiently awaiting the trip home, and said "WInnie, Danielle is sad. " Winnie looked at me and sighed deeply "Yes." Comforted by that response, I said "Do you know why she is sad?". Winnie looked curiously at me and replied "Yes." I thought to myself, oh, well good, maybe I underestimated her and asked "Why is she sad?". Winnie scrunched up her face and thought for a moment, then it was as though she thought "I don't know what to say, but I know she wants me to say something..." and out came "Look at this momma!" and shoved the toy she had in her hand in my face. I tried to ask the question again, but got the same response. I gave up, thanked Winnie for showing me her toy and climbed into the car to start the trek home.
When I got home, I told Scott what had happened, and as I was telling him I came to the thought - I can't actually tell.. I can't tell if she didn't understand, or if she just wasn't able to tell me. In either case, it broke my heart.
While no one likes for their children to feel sadness, the ability to feel sadness in an appropriate situation is something that we don't miss until its not there. If she understood what was happening, but just wasn't able to express that she understood, that is sad in itself. Everyone wants to be able to share their thoughts and feelings with others, even if they choose to keep it inside, they have that choice. Winnie, right now, may not have that choice.
For a Mom who wants to give her kids everything, and afford them every opportunity, my battle with Autism and the things that its sneaking from my children continues. Take a moment, breathe, this too shall pass.
Exciting, because it was Winnie's last "Normal" full day at the Autism Intervention Centre. She starts kindergarten the week after next. She is VERY excited about it, as are the rest of us.
The sad thing about today is that for two of Winnie's ASW's, it was their last day with her. They were very sad to leave her. I can't blame them, they worked so hard with her and the changes in Winnie are amazing.
One of her workers has been with her since the beginning of her therapy and the other has been with her for just the summer. I am sad to know they will not be with Winnie any longer.
The extra sad thing was at the very end of the day. Her worker looked as though she was having a hard time saying goodbye. She shuffled her feet a bit and said bye a few times, she wished Winnie well at school and said that she had fun playing with her this summer. Winnie was her normal smiling self, she said bye like she was taught to and hopped into the car. The girl looked at me and shyly said "Do you think she understands... you know.. that I won't be with her again?"
I looked at her, a comforting smile on my face and replied honestly "No, unfortunately, I don't think she understands that you won't be here next time.."
Saddened, the girl said "Oh, well... I had fun with her, and it was so nice to meet you. Winnie has come so far.." and we continued to chat a few moments before she dragged herself away. I turned to Winnie, who had buckled herself in her carseat and was patiently awaiting the trip home, and said "WInnie, Danielle is sad. " Winnie looked at me and sighed deeply "Yes." Comforted by that response, I said "Do you know why she is sad?". Winnie looked curiously at me and replied "Yes." I thought to myself, oh, well good, maybe I underestimated her and asked "Why is she sad?". Winnie scrunched up her face and thought for a moment, then it was as though she thought "I don't know what to say, but I know she wants me to say something..." and out came "Look at this momma!" and shoved the toy she had in her hand in my face. I tried to ask the question again, but got the same response. I gave up, thanked Winnie for showing me her toy and climbed into the car to start the trek home.
When I got home, I told Scott what had happened, and as I was telling him I came to the thought - I can't actually tell.. I can't tell if she didn't understand, or if she just wasn't able to tell me. In either case, it broke my heart.
While no one likes for their children to feel sadness, the ability to feel sadness in an appropriate situation is something that we don't miss until its not there. If she understood what was happening, but just wasn't able to express that she understood, that is sad in itself. Everyone wants to be able to share their thoughts and feelings with others, even if they choose to keep it inside, they have that choice. Winnie, right now, may not have that choice.
For a Mom who wants to give her kids everything, and afford them every opportunity, my battle with Autism and the things that its sneaking from my children continues. Take a moment, breathe, this too shall pass.
Saturday, August 21, 2010
A conundrum
One of the joys of completing family trees is that you get to piece together puzzles in the family. Its hugely satisfying work to toil away on a family unit, putting information together so that you can make some sense of what happened to the family as a whole.
Currently, I have a puzzle in my family tree that I will likely need assistance on. The patriarch of our family - the farthest back I have gone in the Sinnett family of my line - has a conundrum.
Francis Sinnett - born possibly in Quebec about 1801 - has a 'wife situation'. From what I can apprise.. he had two wives. One named Hannah, born in New Brunswick in 1811 and married to Francis in 1833. No last name is provided and I'm not able to locate any information on her aside from one census when she was about 60 years old.
The other wife that I can find is Savannah Carl, born in 1801 in Ireland. She married Francis in 1822 and had a daughter, Letitia. I know this because she is listed as such on Letitia's death certificate from Massachusetts. The marriage date I obtained from someone else's family tree who is tracking this family unit. So, it may be incorrect.
My question... are they really the same person? Hannah and Savannah? Its entirely possible.. now to discover the truth!!
Currently, I have a puzzle in my family tree that I will likely need assistance on. The patriarch of our family - the farthest back I have gone in the Sinnett family of my line - has a conundrum.
Francis Sinnett - born possibly in Quebec about 1801 - has a 'wife situation'. From what I can apprise.. he had two wives. One named Hannah, born in New Brunswick in 1811 and married to Francis in 1833. No last name is provided and I'm not able to locate any information on her aside from one census when she was about 60 years old.
The other wife that I can find is Savannah Carl, born in 1801 in Ireland. She married Francis in 1822 and had a daughter, Letitia. I know this because she is listed as such on Letitia's death certificate from Massachusetts. The marriage date I obtained from someone else's family tree who is tracking this family unit. So, it may be incorrect.
My question... are they really the same person? Hannah and Savannah? Its entirely possible.. now to discover the truth!!
Subscribe to:
Posts (Atom)