There is a lot of information out there around going gluten-free. Lots of recipes, products - even people willing to share their stories. But what you don't hear is how gluten-free products can cause stomach upsets. Our wee family has had a couple of weeks worth of tummy troubles as I've experimented with a gluten-free diet.
Dinner hasn't been too much of a problem. Meat and three vege. Rice. Soup. It's not too hard to think up gluten-free options for the main meal of the day. But I remain stumped around creating gluten-free lunches. This week I've introduced gluten-free spiral pasta and corn chips. I normally add carrot sticks or pineapple pieces in her lunch-box. Yet it seems this doesn't quite fill Amy up and as she has asked for bread often when we get back from Kindy; I have let her continue to eat it.
I have been baking up a gluten-free storm in an attempt to find some substitues for bread for her lunch. But my attempts at baking with firstly gluten-free flour and then rice-flour only made our family feel a bit off. The gluten-free flour provided us with tasty enough baked goods - pancakes, muffins, chocolate chip cookies, and a yummy banana cake. But the pay-off has been stomach cramps. Not nice. Amy ironically went from constipated to the reverse on the gluten-free flour. The rice flour quite frankly tasted awful - banana chocolate chip muffins and chocolate banana loaf. Amy liked it though. And we all had adverse stomach reactions to the rice flour. It seems the gluten-free flour goes right through Amy in particular which confirms on one hand that she has an issue with too much gluten.
But I am not so sure she needs to be entirely gluten-free and to be honest; I'm not sure how I'd manage that with a very determined four year old. My husband and I agreed tonight that she could just be partially gluten-free for now. We just have to watch how much stodge goes into her diet. I won't bake for a couple of weeks and we'll see what happens.
I have noticed in the three weeks or so that I've greatly decreased lactose from Amy's diet (no cows milk) and cut down on gluten-free products (not so much bread, a gluten-free cereal, and several gluten-free dinners a night) that her mood has lifted considerably. She isn't constipated right now, although the poor thing has swung to the other extreme off and on over the last week or two. I am just going to combine my mothers intuition with common sense here and hope that I work out a good balance for her diet that encourages regular, healthy bowel movements.
Amy's week has been more active than usual. On Wednesday she had a pirate morning at Kindy and all the kids, teachers and some parents walked with the Kindy kids to the local playground and then to a cafe for "pirate food" and then back to Kindy again. The majority of the kids dressed for the part. Amy had a lot of resistance around being a pirate and wanted to be a whale so a whale she was! (A blue shawl and a bit of blue face-paint completed her outfit) It was a decent walk and it tired most of the kids out. Saturday we took Amy for a big family walk up the Centre Of New Zealand (an iconic walk here in Nelson). It's quite the climb and Amy did well - although she wanted to be piggy-backed by her Dad for some of it. Today Amy and her Dad walked to the model trains and back which is also quite a walk.
Amy's spirits seem a lot higher after a bit of extra exercise. She is very active at Kindy and we now have a mini tramp in our lounge (that we have borrowed from her teacher's aide) which Amy uses through-out the day. The point is, she needs to let off steam like any other kid. Being on the spectrum and unable to access her emotions easily means it is essential she gets regular exercise. While she has been settling into morning Kindy I have kept her afternoons pretty quiet. But I think she's pretty settled now so a a bit of exercise outside of Kindy every week will no doubt continue to benefit her.
Saturday, June 20, 2009
Wednesday, June 10, 2009
More specialists on board
It was a busy morning. I was at Amy's Kindy first thing (8.30am) for a meeting with the Head Kindy Teacher and the special education coordinator to fill out the paperwork to apply for the ESW hours (teachers aide) for next term. It is always exhausting tuning into the autistic-side of Amy's personality. To get the funding, she has to look pretty "bad" on paper and no (good) parent likes bad-mouthing their children. The meeting went pretty smoothly. It is good to check in to be reminded of the areas Amy needs help in. She still needs a lot of guidance socially at Kindy though she is thriving there, in her own Amy way.
After the meeting finished I came back home for a ten minute break before a social-worker and a psychologist came round from Tautoko - they provide a service to "Children or adults with an intellectual disability and/or Autism Spectrum Disorder, whose behaviour challenges." We got a referral from Amy's paedaetrician. Today's appointment was an introductory appointment as I won't get a proper appointment for a few months because of a big waiting-list. But today we covered the two major issues we are struggling with with Amy: meltdowns and toileting. We also touched on sleep issues a little.
The older Amy gets the more noticeable it is that she doesn't cry much. Yet, she operates at a high level of anxiety quite a lot of the time. Invariably what happens is the kettle blows and my husband and I are the receivers of this pent-up angst. We have been worried that her meltdowns are getting more aggressive. Apparently this will be looked into more when we have our proper consultation with Tautoko. In the meantime we are to continue doing what we are doing: sending Amy to her room for quiet time when her behaviour is unmanageable. The social-worker also suggested starting a scrapbook with reference to her moods ie: times when she felt happy, times when she felt sad.
Toileting has us completely stumped. We have tried it all - bribes, sticker charts, favourite toys acting out going to the loo, social stories, and a brand-new Wiggles toilet-seat but at the end of the day - if Amy decides she doesn't want to go (even though we know she needs to) - it is very, very hard to pursuade her. The social-worker suggested having a break from toileting as we're all stressed and frustrated with it. Amy hates us being on her back as such about it and we are tearing our hair out trying to understand why a child who knows how to sit on the toilet, pull down her pants and pee just won't do it!! The social-worker said it's a complex issue and very, very common for those on the spectrum.
Sleep-wise Amy has always been unsettled at night. She goes through phases of sleeping through the night but these seem to come and go. As her Mum although it means my own sleep suffers, I am okay supporting her at night (by sleeping in her bed with her when she wakes) because I do think it is anxiety-related. She is still adjusting to being at Morning Kindy five mornings a week. There are social stories we could try to encourage her to sleep alone and a remedy for sleep that we get can get prescribed from the paedetrician called melatonin. Will think about that one - it may be worth looking into.
Some other suggestions made today by the social worker were to get Amy a mini-tramp as she clearly needs to burn off some excess energy. With her mornings being full with Morning Kindy we haven't been getting out as much in the afternoon. She is normally pretty active at Kindy however it has rained for the last three days and I think she's chomping at the bit to have a good runaround (might have to resort to Chipmunks tomorrow - an indoor playground). I'm thinking of re-enrolling her in gymnastics next term. She has done it the last couple of years for a term or two each year and does get a lot out of it (though it is often tiring for me trying to encourage her to join in with the rest of the gym class!)
It's good getting this outside help. I do always appreciate it but it is emotionally tiring as a Mum talking about your child's so-called negative characteristics.
As for the gluten-free diet; things are pretty slow on that front. To tell the truth I haven't really had the energy to make a full conversion. I'm shopping pretty much as normal although Amy has been lactose-free in the milk department and is still on gluten-free cereal. She is eating regular bread though - I haven't yet found a substitute bread that she likes. I'm trying to be as gluten-free as possible at tea-time but things like fish-fingers and bacon and egg pie haven't quite left the weekly menu. I have stopped buying the oven-baked chips though! Amy is one determined four year old and I know what she will eat so it is a challenge trying to think of gluten-free foods that she will like. We're still a WIP around that one.
After the meeting finished I came back home for a ten minute break before a social-worker and a psychologist came round from Tautoko - they provide a service to "Children or adults with an intellectual disability and/or Autism Spectrum Disorder, whose behaviour challenges." We got a referral from Amy's paedaetrician. Today's appointment was an introductory appointment as I won't get a proper appointment for a few months because of a big waiting-list. But today we covered the two major issues we are struggling with with Amy: meltdowns and toileting. We also touched on sleep issues a little.
The older Amy gets the more noticeable it is that she doesn't cry much. Yet, she operates at a high level of anxiety quite a lot of the time. Invariably what happens is the kettle blows and my husband and I are the receivers of this pent-up angst. We have been worried that her meltdowns are getting more aggressive. Apparently this will be looked into more when we have our proper consultation with Tautoko. In the meantime we are to continue doing what we are doing: sending Amy to her room for quiet time when her behaviour is unmanageable. The social-worker also suggested starting a scrapbook with reference to her moods ie: times when she felt happy, times when she felt sad.
Toileting has us completely stumped. We have tried it all - bribes, sticker charts, favourite toys acting out going to the loo, social stories, and a brand-new Wiggles toilet-seat but at the end of the day - if Amy decides she doesn't want to go (even though we know she needs to) - it is very, very hard to pursuade her. The social-worker suggested having a break from toileting as we're all stressed and frustrated with it. Amy hates us being on her back as such about it and we are tearing our hair out trying to understand why a child who knows how to sit on the toilet, pull down her pants and pee just won't do it!! The social-worker said it's a complex issue and very, very common for those on the spectrum.
Sleep-wise Amy has always been unsettled at night. She goes through phases of sleeping through the night but these seem to come and go. As her Mum although it means my own sleep suffers, I am okay supporting her at night (by sleeping in her bed with her when she wakes) because I do think it is anxiety-related. She is still adjusting to being at Morning Kindy five mornings a week. There are social stories we could try to encourage her to sleep alone and a remedy for sleep that we get can get prescribed from the paedetrician called melatonin. Will think about that one - it may be worth looking into.
Some other suggestions made today by the social worker were to get Amy a mini-tramp as she clearly needs to burn off some excess energy. With her mornings being full with Morning Kindy we haven't been getting out as much in the afternoon. She is normally pretty active at Kindy however it has rained for the last three days and I think she's chomping at the bit to have a good runaround (might have to resort to Chipmunks tomorrow - an indoor playground). I'm thinking of re-enrolling her in gymnastics next term. She has done it the last couple of years for a term or two each year and does get a lot out of it (though it is often tiring for me trying to encourage her to join in with the rest of the gym class!)
It's good getting this outside help. I do always appreciate it but it is emotionally tiring as a Mum talking about your child's so-called negative characteristics.
As for the gluten-free diet; things are pretty slow on that front. To tell the truth I haven't really had the energy to make a full conversion. I'm shopping pretty much as normal although Amy has been lactose-free in the milk department and is still on gluten-free cereal. She is eating regular bread though - I haven't yet found a substitute bread that she likes. I'm trying to be as gluten-free as possible at tea-time but things like fish-fingers and bacon and egg pie haven't quite left the weekly menu. I have stopped buying the oven-baked chips though! Amy is one determined four year old and I know what she will eat so it is a challenge trying to think of gluten-free foods that she will like. We're still a WIP around that one.
Friday, June 5, 2009
Appeal week for Autism New Zealand
Tomorrow Morning Amy and I will be collecting for an hour in the lobby at New World Nelson for Autism New Zealand for their annual appeal. I wasn't going to take her originally but now my husbands working so she'll be coming along for the ride. I think she'll quite enjoy having a wee "job" to do in the morning. I didn't mean for her to be a poster-child for autism - I certainly hope people don't see it that way. She is simply helping me collect money for a very good cause.
All I can say as a parent of a child with ASD is that Autism New Zealand is one incredible organisation. Our daughter was only diagnosed in August last year yet in that time we've utilised a lot that Autism New Zealand offers. Earlier this year my husband and I did a day-long course together for just $30pp that was incredible. Understanding the Autistic Spectrum: Implications for Learning was a great introduction to the autism spectrum and how those on it learn differently. I did the Introduction to Advanced Strategies for Autism Spectrum Disorders which went into things in more depth. It was also excellent.
These courses run by Celeste Littek are highly benefical and essential (in my eyes) to educators - those who teach children on the autism spectrum. Autism New Zealand needs money so these courses that are run annually around the country can continue. Without them our children are in danger of being misunderstood and perceived as the badly-behaved children that they have in the past.
There are another half a dozen courses run by Autism New Zealand which are all benefical to parents, family, extended family care-givers and educators.
I go to the local support meetings here in Nelson which are held monthly - something else supported by Autism New Zealand. I'm only a newbie on the block but I'm already grateful for the networks I'm starting to form - nothing is as valuable as connecting with other parents with children with ASD. I truly look forward to these monthly meetings.
When I took Amy to the paedaetrician initially and she got her ASD diagnosis; I was given an A4 sized booklet from Autism New Zealand full of a heap of information. It was a very useful resource and opened up this new world of autism without me having to research too much myself.
I'm sure I haven't even scratched the surface with what Autism New Zealand do. All I know is they are an amazing charity - please support them if you can.
All I can say as a parent of a child with ASD is that Autism New Zealand is one incredible organisation. Our daughter was only diagnosed in August last year yet in that time we've utilised a lot that Autism New Zealand offers. Earlier this year my husband and I did a day-long course together for just $30pp that was incredible. Understanding the Autistic Spectrum: Implications for Learning was a great introduction to the autism spectrum and how those on it learn differently. I did the Introduction to Advanced Strategies for Autism Spectrum Disorders which went into things in more depth. It was also excellent.
These courses run by Celeste Littek are highly benefical and essential (in my eyes) to educators - those who teach children on the autism spectrum. Autism New Zealand needs money so these courses that are run annually around the country can continue. Without them our children are in danger of being misunderstood and perceived as the badly-behaved children that they have in the past.
There are another half a dozen courses run by Autism New Zealand which are all benefical to parents, family, extended family care-givers and educators.
I go to the local support meetings here in Nelson which are held monthly - something else supported by Autism New Zealand. I'm only a newbie on the block but I'm already grateful for the networks I'm starting to form - nothing is as valuable as connecting with other parents with children with ASD. I truly look forward to these monthly meetings.
When I took Amy to the paedaetrician initially and she got her ASD diagnosis; I was given an A4 sized booklet from Autism New Zealand full of a heap of information. It was a very useful resource and opened up this new world of autism without me having to research too much myself.
I'm sure I haven't even scratched the surface with what Autism New Zealand do. All I know is they are an amazing charity - please support them if you can.
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