I thought I'd journal a quick summary of our return to school after the Christmas Break. Transition from these breaks is difficult for kids on the Autism Spectrum - every time! We (and by we, I mean my daughter) are now just getting accustomed to the transition from the weekend to Mondays! Sienna did considerably well and I think, as a family, we were more prepared for challenges this time around... The transition for us as parents is not as stressful if we can begin to anticipate simply that there might be some additional meltdowns and the like. We are learning!!
Monday - Day 1: Not interested in getting dressed, brushing teeth or going to the bathroom... "Mommy help me!" Started getting snow gear on at 7:55. Finally got out the door at 8:35. Ate Welch's fruit snack for lunch at school. Nothing else. Almost missed bus home. Was "looking at pictures on the wall". Where were the peer helpers who are supposed to take them to bus? Wanted to go sledding. Too cold. Meltdown. Soiled underwear. Difficult to get to sit still and eat dinner. In and out of bed at night.
Tuesday - Day 2: Neighbour friend from JK class came over in morning. Hard time playing nicely. Very demanding (not the friend!!). Friend picked up mittens to give to Sienna and she snatched them and yelled, "Don't touch those! They are mine!" Demanding and Emotional (with a capital E!!). Distracted when time to get winter gear on. Wanted to colour. Struggle. Ate most of lunch at school. Yay! Sledded for 15 minutes after school. Refused to eat dinner with us. Didn't want us "looking at her". Ate dinner in playroom by herself. Fell asleep on couch for 20 minutes. Difficult to get to bed.
Wednesday - Day 3: Neighbour came over in morning. Difficulty playing nicely. Have to do it "my way"! Argumentative and unwilling to share. Lala-Land when time for winter gear. Ate most of lunch at school. Soiled underwear. Very glued to TV after school. Think I called her name within 10 feet about 46 times with no response. Had to shut TV off. Swimming. Fell asleep in car on the way. Hadn't had swimming lessons for 3 weeks. Forgot almost everything she's learned including how to hold her breath under water. Funny. But not funny. Ended up with 1:1 so that was good. Instructor asked questions and attempted conversation. No response. Very unsettled in bed. Squirmy, fidgety, unable to settle. Up crying within 2 hours.
Thursday - Day 4: Awake at 5:00am. Dressed herself (first time in weeks!). Excited to wear new sparkly skirt :). Had a meltdown at school when she wanted to sit beside a friend and someone else was sitting there. Didn't eat any lunch at school. Soiled underwear in backpack. Went to neighbour's house after school. Had an accident there. Ate dinner there and then at home too. I got home at 6:00pm. Two or three meltdowns about bath, brushing teeth, getting jammies on. Prepared her for no school tomorrow (Political Protest Day). Fell asleep fairly easily. Was likely exhausted!
Friday - Day 5: Political Protest Day. Shoot. We were on a roll... Wait. Protest cancelled at 6:00am. School is open. Buses are not running. After contemplation, decided she would benefit more socially by going to school and might as well make use of the EA time she gets. Maybe she'll get some 1:1 time. Changed her plans. Not too much of a struggle. Drove her and neighbour friend to school. Eighteen students of all ages rotated from teacher to teacher throughout the day. Soiled underwear in backpack. Went to neighbour's house after school. Picked her up at 5:00. No problems. (Sigh) Yay! Didn't want bath. Meltdown. Convinced her to have one. Went to sleep fine.
All in all, a considerably smooth transition back to school. Having said that, week 2 back to school after the Christmas Break is even better. Less accidents, fewer meltdowns, and better sleep.
Thursday, 17 January 2013
Monday, 7 January 2013
Unstructured Time
Have I said before that children with ASD need structure and routine? Enter.... Christmas Break. Two weeks of chaos in my daughter's world; visiting family members she has not seen for months, driving in the car for long periods of time, noise-filled celebrations with gluten-filled desserts, unfamiliar surroundings, wrapping paper flying everywhere, being with her brother all day every day and having to share mommy and daddy with him, people asking countless questions about Santa and what presents and from whom... This is a recipe for sensory overload.
I would not take back any of the celebrations and I hope that as Sienna gets older, she will be able to manage these events, and lack of structure, a little better. We reviewed every evening what we would be doing the next day, who we would be seeing, whether or not we'd be having a car ride, how we could greet people, who we could play with, and what to say if someone gave us a gift. And she did well at the events. That's my girl! However, in holding it together at these excursions, she expresses her distaste with the lack of structure when we get home. I giggle when I write that. I don't know why. I'm so happy that she can cope with the events as they are happening. It makes parenting her in public much easier than it could be. Maybe I laugh because home is her home. Home is where she is comfortable. It's where she can express her feelings in whatever way she is able.
It is so difficult to teach Sienna how to express her feelings in words. She has recently used the phrase, "But I'm scared!" and I ask her what she is scared of and she says, "Spiders!". Now, I know that is totally untrue. She loves reptiles, spiders and the like. And the spider comment is totally out of context for whatever situation in which she is feeling something uncomfortable. The difficulty is figuring out what it is that she is trying to express. Sienna has struggled, over these two weeks, with expressing her feelings. There have been more frequent and intense meltdowns and she has expressed more need to have specific cups to drink from, specific food to eat, and specific pajamas to sleep in. She has outright refused to go to the bathroom and/or follow the bathroom routine (ie. washing hands) and we've had a hard time just getting her dressed. She has stuck out her tongue, she is slapping our butts hard (which may seem somewhat funny but I'm concerned she will take these things back to school with her), and she has lashed out at her brother a lot (sometimes warranted i'm sure...).
We did a great job of having her bed time routine stay the same as usual (I'm proud of us for that!). But, we could have done a better job at providing some structure during the "home time". That would have likely helped. Structured time, however, means one-on-one adult time. It could include one movie each day or blocks of 20 minutes on our new iPad (!yay!). But it can't be all encompassing movies and iPad all day long. We learned that transitioning from the iPad on to something else is a major meltdown regardless of a visual and auditory timer, with oral reminders of time left from me, and discussion prior to turning on the iPad about what happens and what doesn't happen when the timer sounds. Sienna needs to exercise her body and her brain. Anyone knows over Christmas break how much cleanup and preparation there is to do . This makes for a challenge with finding the individual time for her as well as our son.
We had a lovely Christmas Break - even though we all fought colds and flu. It was great to see both children excited on Christmas morning and beginning to feel the magic of Santa and his reindeer (Rudolph is Sienna's favourite). They walked through the house singing Christmas carols and were happy and joyful at times. As the break drew longer, some significant blood-curdling screaming occurred, more babbling and rhyming with our words, less "real" conversation, and more dependence on mommy for simple things. We learned though. We learned a little bit about how we could try to structure her days a little better next time. She really took to a mini visual schedule allowing her to pick activities in order. I would let her do it and then would move some things around (with her permission) so that we could fit lunch and a potential break in there for me (!!). This is one reason that we ask family and friends to give us some notice for visits. We had visitors call and come over 15 minutes later one day. Well, that really messed up her schedule. If she does not get to do those things in order, life becomes challenging. She barely spoke and didn't interact with the visitors at all. After they left, her schedule was out of order and we didn't have time to fit all the activities in before bath. If we had had notice that morning, it would have been more likely for her to interact, because I would have had a chance to prepare her and she would have had a chance to allow it to sink in and prepare herself. And we would have been able to lessen the activities that she was going to do so she could follow along in order.
I was able to put Sienna into a sport for three 1/2 days last week. It was good. A nice break for me and some structured activity for her. She was able to go with a friend and enjoys watching and following along. I would love to put her in full days but don't feel the staff is adequately able to support her that long. They're just not trained, and quite honestly, don't get paid enough to provide the interventions my daughter needs. They agreed, ahead of time, that they would be able to support the toileting and assured me that if I gave some simple information about strengths and needs, that would be welcome. And we discussed which instructor would best suit my daughter's needs. I didn't get the feeling, however, that this was the case when I gave the instructor a 1/2 page very brief outline of Sienna's strengths, needs, some basic information, and our goals for camp: fun and social interaction. The instructor looked disgusted with my effort to support her. When I asked if she had any questions, she said, "That pretty much covers it all," with a scowl, tone, and... almost a roll of the eyes. I was slightly pissed and responded as nicely as possible, "No. That doesn't really cover it all. But it's a good place to start." As long as they are nice to her and try to support the social interactions with other children, I'm okay with that. But my daughter learns social interaction through significant repetition with one-on-one adult support or by watching what people are modelling around her. She is not able to identify what is and isn't appropriate social behaviour. Hence, the butt-slapping, although I have to make it clear that this is not something she sees in our house... I know what you're thinking! LOL. I had to, and will have to, weigh the pros and cons and hope above hope that people are modelling appropriate behaviour when I'm not around. In this day and age, I have worries. What some children, teens, and adults believe is funny social behaviour, is totally unacceptable in many situations - something my daughter is not able to distinguish - and I'm not sure she will ever figure it all out. She takes things literally and has a hard time understanding people who are joking; something I should make a note to blog about later.
Well, the unstructured break is over. The thoughts on my mind now are... What are we going to do over March Break? And more importantly, what the heck am I going to do over the summer? I feel somewhat disappointed with the sport camp experience. I'm not sure that's something I would feel comfortable putting her back into. I have to think about it. And maybe by July, if her toileting issues are more resolved, I could do it. The "Catch 22" is that it is hard for me to have a break when I am worried about how she is coping (she had soiled underwear 2 of the 3 days at camp when I picked her up) and what she is learning through osmosis. I would really love to have her involved in something with support from someone other than me. Maybe that sounds selfish. But I need a break here and there... and I have a son who, to be honest, should be experiencing more activities than he is. There are always choices and I am constantly weighing them... I wish someone would just tell me what the best choice is every time so I can do it!
I kept thinking of this quote over the break...
There are good days and there are bad days and this is one of them.
~ Lawrence Welk
Isn't that the guy that my grandparents stopped everything for to watch on TV once a week? Maybe they knew something I didn't... Well, he's right. There is always hope as long as we are together. On the good days and bad days alike, I am grateful to have my daughter in my life.
I would not take back any of the celebrations and I hope that as Sienna gets older, she will be able to manage these events, and lack of structure, a little better. We reviewed every evening what we would be doing the next day, who we would be seeing, whether or not we'd be having a car ride, how we could greet people, who we could play with, and what to say if someone gave us a gift. And she did well at the events. That's my girl! However, in holding it together at these excursions, she expresses her distaste with the lack of structure when we get home. I giggle when I write that. I don't know why. I'm so happy that she can cope with the events as they are happening. It makes parenting her in public much easier than it could be. Maybe I laugh because home is her home. Home is where she is comfortable. It's where she can express her feelings in whatever way she is able. It is so difficult to teach Sienna how to express her feelings in words. She has recently used the phrase, "But I'm scared!" and I ask her what she is scared of and she says, "Spiders!". Now, I know that is totally untrue. She loves reptiles, spiders and the like. And the spider comment is totally out of context for whatever situation in which she is feeling something uncomfortable. The difficulty is figuring out what it is that she is trying to express. Sienna has struggled, over these two weeks, with expressing her feelings. There have been more frequent and intense meltdowns and she has expressed more need to have specific cups to drink from, specific food to eat, and specific pajamas to sleep in. She has outright refused to go to the bathroom and/or follow the bathroom routine (ie. washing hands) and we've had a hard time just getting her dressed. She has stuck out her tongue, she is slapping our butts hard (which may seem somewhat funny but I'm concerned she will take these things back to school with her), and she has lashed out at her brother a lot (sometimes warranted i'm sure...).
We did a great job of having her bed time routine stay the same as usual (I'm proud of us for that!). But, we could have done a better job at providing some structure during the "home time". That would have likely helped. Structured time, however, means one-on-one adult time. It could include one movie each day or blocks of 20 minutes on our new iPad (!yay!). But it can't be all encompassing movies and iPad all day long. We learned that transitioning from the iPad on to something else is a major meltdown regardless of a visual and auditory timer, with oral reminders of time left from me, and discussion prior to turning on the iPad about what happens and what doesn't happen when the timer sounds. Sienna needs to exercise her body and her brain. Anyone knows over Christmas break how much cleanup and preparation there is to do . This makes for a challenge with finding the individual time for her as well as our son.
We had a lovely Christmas Break - even though we all fought colds and flu. It was great to see both children excited on Christmas morning and beginning to feel the magic of Santa and his reindeer (Rudolph is Sienna's favourite). They walked through the house singing Christmas carols and were happy and joyful at times. As the break drew longer, some significant blood-curdling screaming occurred, more babbling and rhyming with our words, less "real" conversation, and more dependence on mommy for simple things. We learned though. We learned a little bit about how we could try to structure her days a little better next time. She really took to a mini visual schedule allowing her to pick activities in order. I would let her do it and then would move some things around (with her permission) so that we could fit lunch and a potential break in there for me (!!). This is one reason that we ask family and friends to give us some notice for visits. We had visitors call and come over 15 minutes later one day. Well, that really messed up her schedule. If she does not get to do those things in order, life becomes challenging. She barely spoke and didn't interact with the visitors at all. After they left, her schedule was out of order and we didn't have time to fit all the activities in before bath. If we had had notice that morning, it would have been more likely for her to interact, because I would have had a chance to prepare her and she would have had a chance to allow it to sink in and prepare herself. And we would have been able to lessen the activities that she was going to do so she could follow along in order.I was able to put Sienna into a sport for three 1/2 days last week. It was good. A nice break for me and some structured activity for her. She was able to go with a friend and enjoys watching and following along. I would love to put her in full days but don't feel the staff is adequately able to support her that long. They're just not trained, and quite honestly, don't get paid enough to provide the interventions my daughter needs. They agreed, ahead of time, that they would be able to support the toileting and assured me that if I gave some simple information about strengths and needs, that would be welcome. And we discussed which instructor would best suit my daughter's needs. I didn't get the feeling, however, that this was the case when I gave the instructor a 1/2 page very brief outline of Sienna's strengths, needs, some basic information, and our goals for camp: fun and social interaction. The instructor looked disgusted with my effort to support her. When I asked if she had any questions, she said, "That pretty much covers it all," with a scowl, tone, and... almost a roll of the eyes. I was slightly pissed and responded as nicely as possible, "No. That doesn't really cover it all. But it's a good place to start." As long as they are nice to her and try to support the social interactions with other children, I'm okay with that. But my daughter learns social interaction through significant repetition with one-on-one adult support or by watching what people are modelling around her. She is not able to identify what is and isn't appropriate social behaviour. Hence, the butt-slapping, although I have to make it clear that this is not something she sees in our house... I know what you're thinking! LOL. I had to, and will have to, weigh the pros and cons and hope above hope that people are modelling appropriate behaviour when I'm not around. In this day and age, I have worries. What some children, teens, and adults believe is funny social behaviour, is totally unacceptable in many situations - something my daughter is not able to distinguish - and I'm not sure she will ever figure it all out. She takes things literally and has a hard time understanding people who are joking; something I should make a note to blog about later.
Well, the unstructured break is over. The thoughts on my mind now are... What are we going to do over March Break? And more importantly, what the heck am I going to do over the summer? I feel somewhat disappointed with the sport camp experience. I'm not sure that's something I would feel comfortable putting her back into. I have to think about it. And maybe by July, if her toileting issues are more resolved, I could do it. The "Catch 22" is that it is hard for me to have a break when I am worried about how she is coping (she had soiled underwear 2 of the 3 days at camp when I picked her up) and what she is learning through osmosis. I would really love to have her involved in something with support from someone other than me. Maybe that sounds selfish. But I need a break here and there... and I have a son who, to be honest, should be experiencing more activities than he is. There are always choices and I am constantly weighing them... I wish someone would just tell me what the best choice is every time so I can do it!
I kept thinking of this quote over the break...
There are good days and there are bad days and this is one of them.
~ Lawrence Welk
Isn't that the guy that my grandparents stopped everything for to watch on TV once a week? Maybe they knew something I didn't... Well, he's right. There is always hope as long as we are together. On the good days and bad days alike, I am grateful to have my daughter in my life.
Friday, 21 December 2012
Grieving
When a friend and colleague, with a lot of Special Education background, realized that I had taken a leave of absence from work, she said to me, "It can be very stressful to receive a diagnosis of ASD, so that's understandable for sure." I replied, "What? No! I love Asperger's! (and I wholeheartedly meant that and still do) But I have some other stuff going on in my life right now as well..." Retrospect says to me that, although I had had suspicions of autism for over a year, I was in one of those stages of grief that people talk about.
I have been grieving. There. I said it. I am working through the grief. It's not easy to hear that your child has autism. I even had a bit of a headstart, suspecting ASD at least a year ago. My lovely and supportive colleagues at work will remember that day. To have the grief perspective now, explains a lot of my personal challenges over the last year. My hope is that people will also reflect and forgive me for for not being me. This is not to say that I have any guilt. I did the best I could, and continue to do the best I can. But doesn't it also lend perspective to accepting people's differences...? Something to think about... I will get back to being me again and when I do, those know me will welcome me back.
According to my Google searches :), the stages associated with grieving a diagnosis for your child look somewhat like this:
Shock
Parents may not accept the diagnosis and look for another doctor to tell them something different.
I think I was in shock that day last September, a year before the diagnosis, but I've never looked for another doctor to give me a different answer. My experience in Special Education has given me reasonable perspective, and put that together with the number of assessments we did over the last year and a half, there are too many professionals who agree that a diagnosis is accurate. Likely, I experienced it again the day I got that piece of paper with the word "Asperger Syndrome" on it, signed by the doctor, dated August 14, 2012.
Sadness/Grief
Parents mourn the hopes and dreams they had for their child and will experience periods of great sadness.
Can I get a "hell yeah!". I have good days and bad days. Some days I feel hopeful. Some days I feel relief; especially when the teachers tell me what a great day Sienna had at school, and I see that reflected at home. However, some days I feel very sad. Those are the days I don't want to leave the house and I don't wish to talk to anyone. Or the opposite. I want to get the heck out of my house, avoid all the housework, and talk my friend's ears off about all my "problems". Thank goodness for my friends... As parents, all we ever want for our children is an easy life. No bumps. No hardships. No sadness. And this one is out of my control.
Anger
Parents may direct anger at those closest to them and may feel resentment toward people with typical children. They may overreact at small things, snap at people, and possibly yell.
I'm not going to lie. I have felt resentment knowing that our family will always have this "extra" challenge in our lives that others don't have. But I'm beginning to come to terms with that, knowing that everyone will have challenges in their lives. This one is ours. And I'll be the first to admit, my diplomacy is not getting from my brain to my mouth on occasion! :)
Denial
Parents may refuse to believe this is happening to their child.
I think my denial stage has been to keep myself busy. I have spent hours upon hours of filling out paperwork, calling community agencies, keeping in touch with the school (poor teachers!! LOL), and setting our house up appropriately for our daughter. Now that I have a handle on that stuff, I have been able to move in and out of the other stages...
Loneliness
Parents may feel they don't have time to contact friends or family, or that if reached out to, they wouldn't understand or be supportive.
For sure I have felt this way. But it's really interesting how people "come out of the woodwork" with support when they know you're hurting. I was able to keep some of my girl's nights out here and there but totally dropped the yoga unfortunately. I think everyone however, with two young children, goes through this at times. For us, the new school transition caused health concerns with Sienna and it took both parents to be home to ensure she was okay (along with our son), not to mention other significant stressors going on at the same time. So, I'm beginning to organize my life somewhat and trying to figure out how to find that "me" time in our busy lives... I recognize that I have to take care of myself in order to be emotionally available to my family. That is where my work begins. Back to yoga I go!
Acceptance
Parents will begin to accept the diagnosis and accept autism. This will allow them to learn about autism and begin to advocate for their child.
I am thankful for the very basic knowledge I had of autism prior to receiving the diagnosis. It is nothing, however, compared to what we have still to learn about our own child. We will always be educating ourselves, trying new things, figuring out what works, and reading more. Parenting a young child is something we've never done before. Parenting a child with autism is something we've never done before. The learning curves are steep and we are always looking for new ways to support our children.
It's important AND healthy to go through all these stages. And personally, I have to remind myself that I may revisit these feelings from time to time... and that's okay.
There is a really great web site called Autism Speaks which also has an iPhone app that I'm in LOVE with!! There is great information here including a blog, information about family services, scientific news related to autism, how advocacy and action are supporting autism, news, and videos. I'm sure I will be sharing and posting videos and articles there in the future. In the meantime, check it out!!
I have been grieving. There. I said it. I am working through the grief. It's not easy to hear that your child has autism. I even had a bit of a headstart, suspecting ASD at least a year ago. My lovely and supportive colleagues at work will remember that day. To have the grief perspective now, explains a lot of my personal challenges over the last year. My hope is that people will also reflect and forgive me for for not being me. This is not to say that I have any guilt. I did the best I could, and continue to do the best I can. But doesn't it also lend perspective to accepting people's differences...? Something to think about... I will get back to being me again and when I do, those know me will welcome me back.
According to my Google searches :), the stages associated with grieving a diagnosis for your child look somewhat like this:
Shock
Parents may not accept the diagnosis and look for another doctor to tell them something different.
I think I was in shock that day last September, a year before the diagnosis, but I've never looked for another doctor to give me a different answer. My experience in Special Education has given me reasonable perspective, and put that together with the number of assessments we did over the last year and a half, there are too many professionals who agree that a diagnosis is accurate. Likely, I experienced it again the day I got that piece of paper with the word "Asperger Syndrome" on it, signed by the doctor, dated August 14, 2012.
Sadness/Grief
Parents mourn the hopes and dreams they had for their child and will experience periods of great sadness.
Can I get a "hell yeah!". I have good days and bad days. Some days I feel hopeful. Some days I feel relief; especially when the teachers tell me what a great day Sienna had at school, and I see that reflected at home. However, some days I feel very sad. Those are the days I don't want to leave the house and I don't wish to talk to anyone. Or the opposite. I want to get the heck out of my house, avoid all the housework, and talk my friend's ears off about all my "problems". Thank goodness for my friends... As parents, all we ever want for our children is an easy life. No bumps. No hardships. No sadness. And this one is out of my control.
Anger
Parents may direct anger at those closest to them and may feel resentment toward people with typical children. They may overreact at small things, snap at people, and possibly yell.
I'm not going to lie. I have felt resentment knowing that our family will always have this "extra" challenge in our lives that others don't have. But I'm beginning to come to terms with that, knowing that everyone will have challenges in their lives. This one is ours. And I'll be the first to admit, my diplomacy is not getting from my brain to my mouth on occasion! :)
Denial
Parents may refuse to believe this is happening to their child.
I think my denial stage has been to keep myself busy. I have spent hours upon hours of filling out paperwork, calling community agencies, keeping in touch with the school (poor teachers!! LOL), and setting our house up appropriately for our daughter. Now that I have a handle on that stuff, I have been able to move in and out of the other stages...
Loneliness
Parents may feel they don't have time to contact friends or family, or that if reached out to, they wouldn't understand or be supportive.
For sure I have felt this way. But it's really interesting how people "come out of the woodwork" with support when they know you're hurting. I was able to keep some of my girl's nights out here and there but totally dropped the yoga unfortunately. I think everyone however, with two young children, goes through this at times. For us, the new school transition caused health concerns with Sienna and it took both parents to be home to ensure she was okay (along with our son), not to mention other significant stressors going on at the same time. So, I'm beginning to organize my life somewhat and trying to figure out how to find that "me" time in our busy lives... I recognize that I have to take care of myself in order to be emotionally available to my family. That is where my work begins. Back to yoga I go!
Acceptance
Parents will begin to accept the diagnosis and accept autism. This will allow them to learn about autism and begin to advocate for their child.
I am thankful for the very basic knowledge I had of autism prior to receiving the diagnosis. It is nothing, however, compared to what we have still to learn about our own child. We will always be educating ourselves, trying new things, figuring out what works, and reading more. Parenting a young child is something we've never done before. Parenting a child with autism is something we've never done before. The learning curves are steep and we are always looking for new ways to support our children.
It's important AND healthy to go through all these stages. And personally, I have to remind myself that I may revisit these feelings from time to time... and that's okay.
There is a really great web site called Autism Speaks which also has an iPhone app that I'm in LOVE with!! There is great information here including a blog, information about family services, scientific news related to autism, how advocacy and action are supporting autism, news, and videos. I'm sure I will be sharing and posting videos and articles there in the future. In the meantime, check it out!!
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