I went food shopping today - the second shop since deciding to get Amy on to a gluten-free diet. Although there are some gluten-free products to choose from at our regular supermarket; not all of them are liked by Amy. She likes her Cocoa Bombs cereal (which is good because we've always struggled with getting cereal into her) but hasn't liked any of the gluten-free bread I've bought thus far (rice bread last week and corn bread this week). Interestingly, she's not too keen on any kind of bread at the moment. So lunch seems to be comprised of popcorn, pineapple pieces and luncheon sausage.
I made some gluten-free pancakes in the weekend which turned out really well. However a couple of attempts at baking cookies kinda flopped. I am a WIP in using gluten-free flour - getting the consistency right is a bit of a challenge.
I got three books out of the library on Monday to do with gluten-free cooking. One is a New Zealand book crammed with recipes. I have three recipes I will try this week, all going well.
I'm still half-hearted about taking dairy completely out of Amy's diet. But I've stopped buying her special kids yoghurt, we haven't had cheese for a week and she's been on lactose-free milk for a week. I do buy icecream over the Summer and stopped buying it a few weeks back for home but she's been missing it a bit. So she and I did treat ourselves to an icecream each at the mall today.
I made burgers for tea last night and we had kumaru chips instead of oven-baked chips (which are coated in wheat-flour). Amy wasn't happy about that and asked where her "yellow chips" were - she refused to eat the kumaru ones. I gave her a bun but she ate the bit with butter on it and that's about it. Incidentally I bought some rice bran oil spread this week which no-one seems to mind. I can see there are going to be a lot of hit and misses around this subtle dietary change I'm trying to introduce.
The more I think about it, the more I am convinced that Amy's constipation issues are not helped by her intake of gluten. She hasn't had any supermarket cookies for a week - only Mums gluten-free cookies that have mainly flopped, and has eaten hardly any bread. There is no evidence of any kind of improvement so far yet it has only been a few days yet I think we are on the right track though so I will keep persisting.
Wednesday, May 27, 2009
Wednesday, May 20, 2009
Heading towards a gluten/dairy free diet
Ever since Amy was diagnosed with ASD, it has been suggested from several sources that a gluten/dairy-free diet might be the way to go. As a Mum my priority has been managing some of Amy's more unsavoury ASD traits up to this point. The social/emotional/behavioural stuff has been exhausting and I didn't have the time or energy to do much beyond managing our ASD preschooler on a daily basis for quite some time.
However now that Amy is pretty much settled into Morning Kindy with a teacher's aide, and that I am getting some "me-time" (i.e: time to think!) while she is at Kindy, I feel ready to explore the dietary aspect of ASD.
Many moons ago (in the mid-nineties), I worked two Summers in a children's camp in the USA for children with learning/emotional and behavioural problems. The camp had a preservative-free diet. Half-way through the camp the parents could come to visit and often came armed with a lot of food full of all the stuff these kids had been so carefully weaned off! Not surprisingly the kids with ADHD were off their nut after eating copious amounts of junk food. It took several days for the kids to settle down and a lot of extra work and patience was require by the camp counsellors! It was very obvious that diet affected a lot of the children that went to this camp.
The ASD child comes with high anxiety levels. Amy is anxious on a daily basis around some simple routine-tasks such as toileting and getting changed to have a bath, for instance. So scenarios outside the home that are riddled with uncertainties that cannot be preempted are a constant source of worry for her. I can read how anxious she is on any given day or week by how regular/irregular her toileting is and in particular this is often indicated by what's going on (or not going on!) in the poo department.
The last couple of weeks have been extra-anxious ones for Amy. We went away for a week and then the week in which we came back was about her decompressing after our trip away. Sure enough she got a bit more bunged up than usual - and this only adds fuels to the fire on the ASD front. When I got a text from my husband on Sunday reading Poo at last! I understood totally his jubilation! When a poo finally arrives, Amy's demeanour completely changes. It's almost as though sometimes the whole household cannot relax until a bowel movement happens!
I have been thinking about how when we were away we ate a bit of junk food/food full of preservatives. Our diet is usually pretty healthy overall. I felt gross myself after all the stodge. I personally cannot eat a lot of gluten myself so have always agreed with the theory that some of us just cannot eat a lot of it. A very good friend of mine claims to be around ninety percent gluten-free and has felt so much better since eliminating gluten from her diet.
Amy and I typically bake together once or twice a week. I have been aware of all the extra gluten going into her system and a couple of weeks ago bought some gluten-free flour. This was my first step towards thinking I might give the gluten-free thing a go for Amy.
My husband also recently found out he has high cholesterol levels so I thought I may as well start reducing the dairy-intake in our household as well. So I went food shopping this week without doing a lot of research - just winging it to see what I might come back with. It was pretty easy - I just got some gluten-free cereal for Amy (which has Cocoa in it which she loves), some gluten-free bread (which Amy isn't that keen on) and some gluten-free spaghetti. Wheat flour is the ingredient to look for. Some of the meals we've had this week have had wheat flour in them: chips/fish fingers/quiche - I am a WIP around reading the labels for gluten/wheat flour content.
For my husband I just looked out for no cholesterol products - the only big difference was changing brands for margarine. For the first time in a long time I came home with no cheese! I will miss that on our spaghetti bolognese and no more cheese toasties which makes me a little sad! I am choosing to join my family in these dietary changes as obviously having food in the house that a four year old cannot eat is not fair nor worth the hassle! It is going to be an adjustment but perhaps a welcome one. Even I am bored with cooking and eating the same-old, same-old.
There is a wealth of information on the net about ASD and the gluten/dairy free diet. I haven't dipped into it too much at this point. I am just following my intuition. Amy won't be gluten-free overnight and I am on the fence about her being entirely dairy-free. I think for now I will just cut out cows milk (I bought her some lactose-free milk which she likes) and cheese but will allow yoghurt. (just not on a daily basis).
Amy had her B4 School Check today which went well although she is being referred back to audiology (she went through audiology as part of her ASD diagnosis almost a year ago) as there were some minor issues around hearing a particular pitch. She also wasn't so keen on wearing an eye-patch or having me cover her eye so she didn't complete the vision test and will go back in about six months to do it again. Part of the check entailed talking to a nurse about her development across the board. Since she has a diagnosis I was about to talk to the nurse about her ASD in detail. Basically these checks are an opportunity to pick up any problems before New Zealand children start school. When I said I was looking at making Amy's diet gluten-free she suggested I put her on a complete gluten-free diet for a whole month to see if it makes a difference so I will do that. I guess I am slowly gearing up towards doing so!
However now that Amy is pretty much settled into Morning Kindy with a teacher's aide, and that I am getting some "me-time" (i.e: time to think!) while she is at Kindy, I feel ready to explore the dietary aspect of ASD.
Many moons ago (in the mid-nineties), I worked two Summers in a children's camp in the USA for children with learning/emotional and behavioural problems. The camp had a preservative-free diet. Half-way through the camp the parents could come to visit and often came armed with a lot of food full of all the stuff these kids had been so carefully weaned off! Not surprisingly the kids with ADHD were off their nut after eating copious amounts of junk food. It took several days for the kids to settle down and a lot of extra work and patience was require by the camp counsellors! It was very obvious that diet affected a lot of the children that went to this camp.
The ASD child comes with high anxiety levels. Amy is anxious on a daily basis around some simple routine-tasks such as toileting and getting changed to have a bath, for instance. So scenarios outside the home that are riddled with uncertainties that cannot be preempted are a constant source of worry for her. I can read how anxious she is on any given day or week by how regular/irregular her toileting is and in particular this is often indicated by what's going on (or not going on!) in the poo department.
The last couple of weeks have been extra-anxious ones for Amy. We went away for a week and then the week in which we came back was about her decompressing after our trip away. Sure enough she got a bit more bunged up than usual - and this only adds fuels to the fire on the ASD front. When I got a text from my husband on Sunday reading Poo at last! I understood totally his jubilation! When a poo finally arrives, Amy's demeanour completely changes. It's almost as though sometimes the whole household cannot relax until a bowel movement happens!
I have been thinking about how when we were away we ate a bit of junk food/food full of preservatives. Our diet is usually pretty healthy overall. I felt gross myself after all the stodge. I personally cannot eat a lot of gluten myself so have always agreed with the theory that some of us just cannot eat a lot of it. A very good friend of mine claims to be around ninety percent gluten-free and has felt so much better since eliminating gluten from her diet.
Amy and I typically bake together once or twice a week. I have been aware of all the extra gluten going into her system and a couple of weeks ago bought some gluten-free flour. This was my first step towards thinking I might give the gluten-free thing a go for Amy.
My husband also recently found out he has high cholesterol levels so I thought I may as well start reducing the dairy-intake in our household as well. So I went food shopping this week without doing a lot of research - just winging it to see what I might come back with. It was pretty easy - I just got some gluten-free cereal for Amy (which has Cocoa in it which she loves), some gluten-free bread (which Amy isn't that keen on) and some gluten-free spaghetti. Wheat flour is the ingredient to look for. Some of the meals we've had this week have had wheat flour in them: chips/fish fingers/quiche - I am a WIP around reading the labels for gluten/wheat flour content.
For my husband I just looked out for no cholesterol products - the only big difference was changing brands for margarine. For the first time in a long time I came home with no cheese! I will miss that on our spaghetti bolognese and no more cheese toasties which makes me a little sad! I am choosing to join my family in these dietary changes as obviously having food in the house that a four year old cannot eat is not fair nor worth the hassle! It is going to be an adjustment but perhaps a welcome one. Even I am bored with cooking and eating the same-old, same-old.
There is a wealth of information on the net about ASD and the gluten/dairy free diet. I haven't dipped into it too much at this point. I am just following my intuition. Amy won't be gluten-free overnight and I am on the fence about her being entirely dairy-free. I think for now I will just cut out cows milk (I bought her some lactose-free milk which she likes) and cheese but will allow yoghurt. (just not on a daily basis).
Amy had her B4 School Check today which went well although she is being referred back to audiology (she went through audiology as part of her ASD diagnosis almost a year ago) as there were some minor issues around hearing a particular pitch. She also wasn't so keen on wearing an eye-patch or having me cover her eye so she didn't complete the vision test and will go back in about six months to do it again. Part of the check entailed talking to a nurse about her development across the board. Since she has a diagnosis I was about to talk to the nurse about her ASD in detail. Basically these checks are an opportunity to pick up any problems before New Zealand children start school. When I said I was looking at making Amy's diet gluten-free she suggested I put her on a complete gluten-free diet for a whole month to see if it makes a difference so I will do that. I guess I am slowly gearing up towards doing so!
Wednesday, May 13, 2009
A tough day on the ASD front
Yesterday was an almightly post-holiday backlash. Luckily Amy didn't go to Kindy as we had an appointment with the paedeatrician.
When Amy refuses to eat her breakfast and is (extra) resistant towards toileting; I know that she's in one of her non-compliant phases. So yesterday morning the red flags were there that the day was going to be filled with lots of ASD moments. It's almost as though Amy starts to spiral through her own refusal to stick to her routine.
Sure enough when we arrived at our 10am appointment with the paedeatrician Amy started to dig her heels in. She was okay being weighed and having her height measured but she did not want to go into the small room that is the paedeatrician's office. (It was our third visit in less than a year). Amy made this clear by not budging once her weight and height had been recorded - she simply didn't want to leave the room. The only way to get her out was by me lifting her and at 21.45kg, I tell you it is a physical struggle (being just under 60kg myself).
I picked her up and carried her to see the Dr at which point she started physically attacking me - hitting/pulling my hair/attempting to bite me. After a few minutes of it the Dr and I thought perhaps she could just play outside in the waiting room but she was too worked up. She ended up being most comfortable going back to the room she didn't want to budge from at the beginning. As I talked to the Dr I could hear her grunting and groaning to herself in frustration. By the time I came out of the appointment, she had calmed down enough to play for a bit in the waiting room.
In a way it was a good thing her behaviour flared up right in front of the paedeatrician as now we have a referral to see a psychologist (!) within the next six months. My husband and I are accepting any offer of help that comes along. I think consulting with a psychologist would be great - as the Head Teacher at Kindy commented today : "You don't want her doing that (attacking us) when she's ten!". Well, no. Being attacked by your four year old is one thing and I am already a bit concerned that she could harm my husband or myself during one of her meltdowns. When we were away last week my husband ended up with a few scratches on his face - she actually drew blood. I am not surprised in the least to hear about the occasional report in the news in which an autistic child has tried to hurt or even kill a parent as autistic children typically lash out at their nearest and dearest.
After the appointment with the paedeatrician I took Amy to The Warehouse to get some new shoes. I wouldn't normally be so brave after a meltdown but her shoes had fallen completely apart - she kind of needed them. Yet the non-complaint behaviour continued and I got sympathetic looks as Amy tossed several pairs of shoes angrily down the aisle because they weren't red. (She'd got it in her head that red shoes were what she wanted - last week it was gumboots with My Little Ponies on them). Because she refused to choose a pair of shoes from the two pairs on offer; I ended up choosing them myself. She's been wearing them ever since.
Yesterday was certainly a nightmare on the ASD front. Behind closed doors (at home) Amy never actually snapped out of it. There were no tears - instead there was lots of aggressive behaviour towards me. I realised yesterday that Amy and I hadn't had any proper "me time" for around ten days. So I went off to the gym last night for a much-needed Mummy time-out.
After the gym I went to the local primary school for a prospective pupil meeting. Although Amy doesn't start until next year, I really wanted to check out the school and to meet the teachers. I now feel happy and confident that Amy is going to be well-supported at primary school. I spoke with the deputy principal (DP) and the new entrants teacher and both are familar with ASD and Aspergers. The DP currently had three children with ASD/Aspergers in one of her classes. I also think Amy will love learning. Kindy is almost a bit boring for her - just hanging out with a bunch of four year olds five mornings a week!
This morning I went to the Nelson ASD support meeting at a local cafe. I really enjoyed talking with other Mums about ASD/Aspergers. There were around eight of us today. This was my fourth meeting so I'm slowly getting to know everyone. Every meeting has varied in size (from two - twentyish). People come and go. But there is no doubt that connecting with Mums in the same boat is one of the best forms of support you could ask for. I am so grateful that there is a support group here in Nelson - it is invaluable.
When Amy refuses to eat her breakfast and is (extra) resistant towards toileting; I know that she's in one of her non-compliant phases. So yesterday morning the red flags were there that the day was going to be filled with lots of ASD moments. It's almost as though Amy starts to spiral through her own refusal to stick to her routine.
Sure enough when we arrived at our 10am appointment with the paedeatrician Amy started to dig her heels in. She was okay being weighed and having her height measured but she did not want to go into the small room that is the paedeatrician's office. (It was our third visit in less than a year). Amy made this clear by not budging once her weight and height had been recorded - she simply didn't want to leave the room. The only way to get her out was by me lifting her and at 21.45kg, I tell you it is a physical struggle (being just under 60kg myself).
I picked her up and carried her to see the Dr at which point she started physically attacking me - hitting/pulling my hair/attempting to bite me. After a few minutes of it the Dr and I thought perhaps she could just play outside in the waiting room but she was too worked up. She ended up being most comfortable going back to the room she didn't want to budge from at the beginning. As I talked to the Dr I could hear her grunting and groaning to herself in frustration. By the time I came out of the appointment, she had calmed down enough to play for a bit in the waiting room.
In a way it was a good thing her behaviour flared up right in front of the paedeatrician as now we have a referral to see a psychologist (!) within the next six months. My husband and I are accepting any offer of help that comes along. I think consulting with a psychologist would be great - as the Head Teacher at Kindy commented today : "You don't want her doing that (attacking us) when she's ten!". Well, no. Being attacked by your four year old is one thing and I am already a bit concerned that she could harm my husband or myself during one of her meltdowns. When we were away last week my husband ended up with a few scratches on his face - she actually drew blood. I am not surprised in the least to hear about the occasional report in the news in which an autistic child has tried to hurt or even kill a parent as autistic children typically lash out at their nearest and dearest.
After the appointment with the paedeatrician I took Amy to The Warehouse to get some new shoes. I wouldn't normally be so brave after a meltdown but her shoes had fallen completely apart - she kind of needed them. Yet the non-complaint behaviour continued and I got sympathetic looks as Amy tossed several pairs of shoes angrily down the aisle because they weren't red. (She'd got it in her head that red shoes were what she wanted - last week it was gumboots with My Little Ponies on them). Because she refused to choose a pair of shoes from the two pairs on offer; I ended up choosing them myself. She's been wearing them ever since.
Yesterday was certainly a nightmare on the ASD front. Behind closed doors (at home) Amy never actually snapped out of it. There were no tears - instead there was lots of aggressive behaviour towards me. I realised yesterday that Amy and I hadn't had any proper "me time" for around ten days. So I went off to the gym last night for a much-needed Mummy time-out.
After the gym I went to the local primary school for a prospective pupil meeting. Although Amy doesn't start until next year, I really wanted to check out the school and to meet the teachers. I now feel happy and confident that Amy is going to be well-supported at primary school. I spoke with the deputy principal (DP) and the new entrants teacher and both are familar with ASD and Aspergers. The DP currently had three children with ASD/Aspergers in one of her classes. I also think Amy will love learning. Kindy is almost a bit boring for her - just hanging out with a bunch of four year olds five mornings a week!
This morning I went to the Nelson ASD support meeting at a local cafe. I really enjoyed talking with other Mums about ASD/Aspergers. There were around eight of us today. This was my fourth meeting so I'm slowly getting to know everyone. Every meeting has varied in size (from two - twentyish). People come and go. But there is no doubt that connecting with Mums in the same boat is one of the best forms of support you could ask for. I am so grateful that there is a support group here in Nelson - it is invaluable.
Monday, May 11, 2009
Like a fish out of water
Travelling with our ASD daughter is a little like taking a fish out of water. At home her exposure to all the outside things that are likely to send her off-balance can be monitored. When away, that control is lessened considerably. Every trip I go on with Amy involves an inventory at the end of what I could have done better - as well an acknowledgment of what worked.
What worked this trip was splitting our trip into two parts. For the first three nights we stayed in homes with other families. For the final four we stayed in a motel. The timing was perfect - Amy had clearly had enough of sharing her space with other children after three nights. Until that point she did really, really well. It was hard for the families we stayed with those nights to "get" Amy's ASD as really, it was barely apparent.
On the first night (Monday) Amy fitted in quite happily in the "madness" that was going on at her cousin's home in Hamilton - seven children including Amy at tea-time eating sausages and chips. There was the odd instance of "space-invasion" including pushing over a younger cousin on purpose; but all in all, she fitted in really well. She was quite fascinated with her one year old cousin and played quite a bit with him.
We stayed the next two nights (Tuesday, Wednesday) with a good friend of mine with two children under three. Amy got on really well with the three-year old as the two of them seemed to enjoy parallel-play. They had one outing together to Lollipops which was a hit as well. Amy played appropriately with the eight-month old too, handing her toys in a gentle fashion. However when Amy didn't want the baby in her space she asked me to pick her up. The morning we left Amy was starting to kick out at the baby - it was time to move on.
Although we had a motel room, our social engagements with extended family didn't all go so well. I thought a motel room would give Amy the space she needed but it seems a weeks holiday is perhaps too long for her, regardless of where we stay. (We had a weeks holiday with my Dad and family in January that was a struggle for Amy).
Our first visit with family on Thursday morning was with Amy's Nana. I tried to prepare Amy as much as possible and listed all the family I thought would be there. However, my in-laws equate to a very large family and it is impossible to predict who will be around at any given time. As it turned out, Nana's house was chocca full of people and Amy didn't want to come in. She even said "It's too scarey". Normally I wouldn't push her, but we had travelled to see family so I pushed her out of her comfort zone. All of the children in the room were under three and Amy wasn't keen on this combo of children at all. We managed to convince her to have some lunch and eventually she relaxed a bit more and said it wasn't "so scarey." I took her outside to play in Nana's big backyard but Amy wasn't so sure she wanted to be there and made this known by throwing sand into the areas her younger cousins were in.
Thursday afternoon we headed round to have fish and chips for tea with a cousin that Amy has clicked with really well in the past (she's six, going on seven). The two got on like a house on fire, colouring and watching DVDs together. It is always a huge relief when Amy gets on well with other children!
Friday it was obvious that Amy was starting to feel the strain of a lot of socialising. She had her first meltdown of the week. What do I mean by meltdown? In this family it is a case of pent up emotion that hasn't been relieved for a while that finally blows. We'd been away since Monday and Amy hadn't cried once. We know when she needs to a good release because it's all in her behaviour. Basically she gets really silly and non-compliant. If changing tack doesn't change the behaviour we resort to shutting her into her room with the door closed (at home). This will normally frustrate her so much that the tears are forced to come. So we did the same at the motel. While the door is held shut she throws things around and kicks the door. Opening the door at this point often results in Amy attacking a parent - sometimes she'll be so mad at the parent holding the door that she will lash out at the parent on the other side of the room who has nothing to do with the current time-out! Amy is very good at taking her anger out on others.
Eventually the tears came and Amy had a good cry. After this we went out to a local cafe together and then drove out to see the same cousins as above but she fell asleep in the car on the way out. When she woke up she wouldn't come out of the car as her favourite cousin was at school. So she sat out in the car for fifteen minutes or so by herself. She requested at this point that we go back to the motel which we did. However within minutes of arriving we had an unexpected family visitor and Amy made it very clear she wanted her own space! We have been encouraging her all along to use her words and this is what she did; "I don't want to play!" she said when her two year old cousin turned up. She requested that I pick her cousin up (so she could have all the floor space to herself). Things got steadily worse with Amy screaming if her cousin was even within a centimentre of her pony toys - eventually Amy's Aunt and the two year old cousin left. This particular Aunt said she had a very good insight as to what ASD was all about!!
Shortly afterwards Amy had an enormous meltdown - the second one on the Friday. At this point I was truly regretting the fact I'd booked a week-long trip and was wondering how we'd survive three more nights!
Saturday we went to Amy's Nana's 60th which was a pot-luck lunch in a country hall. Amy was already so exhausted from a busy week of travel and socialising; I really wasn't sure how it would go. The first couple of hours went okay - Amy flitted around the hall, dragging a couple of helium balloons and helped herself to cheerios and chips. However things got pretty loud with over ten children in the hall so we decided to take a little time-out and went for a walk down to the local school. Amy had a wee play in the playground. When we came back to the hall she ran ahead of me only to get her finger stuck in the door. She screamed blue murder and had a good cry. It was definitely time to leave for us yet there were family photos to be taken so we stayed on a little bit.
Amy was past it yet we managed to stay three and a half hours all up at the lunch which wasn' t too bad.
Sunday family hosted an all-day lunch. This was at Amy's favourite cousin's place again. It worked quite well because there was a huge backyard with a trampoline and we were able to take Amy outside when she needed a break from the indoor play. Her older cousin got a bit annoyed with Amy's attempts at joining in some complicated play and I had to explain to Amy's cousin that Amy only wanted to join in and didn't understand the "rules". We stayed for about four hours and it worked okay because we were able to move Amy inside and outside when she needed a change of scene. She had some quiet-time in the car towards the end too which she seemed to be grateful for - that quiet space which is hers that isn't in danger of being invaded.
All in all it was probably a successful week away with Amy. I say probably because there were two days there with the meltdowns and all in which we were pretty much stuck in a motel for large parts of the day as Amy needed a break from all the socialising. She was pushed and although I questioned it at the time, I think she has grown socially this week. She has mixed with newborns all the way through to seven year olds. She is only four years old and is still getting to know our extended family. I'm sure these trips away will get easier over time!
What worked this trip was splitting our trip into two parts. For the first three nights we stayed in homes with other families. For the final four we stayed in a motel. The timing was perfect - Amy had clearly had enough of sharing her space with other children after three nights. Until that point she did really, really well. It was hard for the families we stayed with those nights to "get" Amy's ASD as really, it was barely apparent.
On the first night (Monday) Amy fitted in quite happily in the "madness" that was going on at her cousin's home in Hamilton - seven children including Amy at tea-time eating sausages and chips. There was the odd instance of "space-invasion" including pushing over a younger cousin on purpose; but all in all, she fitted in really well. She was quite fascinated with her one year old cousin and played quite a bit with him.
We stayed the next two nights (Tuesday, Wednesday) with a good friend of mine with two children under three. Amy got on really well with the three-year old as the two of them seemed to enjoy parallel-play. They had one outing together to Lollipops which was a hit as well. Amy played appropriately with the eight-month old too, handing her toys in a gentle fashion. However when Amy didn't want the baby in her space she asked me to pick her up. The morning we left Amy was starting to kick out at the baby - it was time to move on.
Although we had a motel room, our social engagements with extended family didn't all go so well. I thought a motel room would give Amy the space she needed but it seems a weeks holiday is perhaps too long for her, regardless of where we stay. (We had a weeks holiday with my Dad and family in January that was a struggle for Amy).
Our first visit with family on Thursday morning was with Amy's Nana. I tried to prepare Amy as much as possible and listed all the family I thought would be there. However, my in-laws equate to a very large family and it is impossible to predict who will be around at any given time. As it turned out, Nana's house was chocca full of people and Amy didn't want to come in. She even said "It's too scarey". Normally I wouldn't push her, but we had travelled to see family so I pushed her out of her comfort zone. All of the children in the room were under three and Amy wasn't keen on this combo of children at all. We managed to convince her to have some lunch and eventually she relaxed a bit more and said it wasn't "so scarey." I took her outside to play in Nana's big backyard but Amy wasn't so sure she wanted to be there and made this known by throwing sand into the areas her younger cousins were in.
Thursday afternoon we headed round to have fish and chips for tea with a cousin that Amy has clicked with really well in the past (she's six, going on seven). The two got on like a house on fire, colouring and watching DVDs together. It is always a huge relief when Amy gets on well with other children!
Friday it was obvious that Amy was starting to feel the strain of a lot of socialising. She had her first meltdown of the week. What do I mean by meltdown? In this family it is a case of pent up emotion that hasn't been relieved for a while that finally blows. We'd been away since Monday and Amy hadn't cried once. We know when she needs to a good release because it's all in her behaviour. Basically she gets really silly and non-compliant. If changing tack doesn't change the behaviour we resort to shutting her into her room with the door closed (at home). This will normally frustrate her so much that the tears are forced to come. So we did the same at the motel. While the door is held shut she throws things around and kicks the door. Opening the door at this point often results in Amy attacking a parent - sometimes she'll be so mad at the parent holding the door that she will lash out at the parent on the other side of the room who has nothing to do with the current time-out! Amy is very good at taking her anger out on others.
Eventually the tears came and Amy had a good cry. After this we went out to a local cafe together and then drove out to see the same cousins as above but she fell asleep in the car on the way out. When she woke up she wouldn't come out of the car as her favourite cousin was at school. So she sat out in the car for fifteen minutes or so by herself. She requested at this point that we go back to the motel which we did. However within minutes of arriving we had an unexpected family visitor and Amy made it very clear she wanted her own space! We have been encouraging her all along to use her words and this is what she did; "I don't want to play!" she said when her two year old cousin turned up. She requested that I pick her cousin up (so she could have all the floor space to herself). Things got steadily worse with Amy screaming if her cousin was even within a centimentre of her pony toys - eventually Amy's Aunt and the two year old cousin left. This particular Aunt said she had a very good insight as to what ASD was all about!!
Shortly afterwards Amy had an enormous meltdown - the second one on the Friday. At this point I was truly regretting the fact I'd booked a week-long trip and was wondering how we'd survive three more nights!
Saturday we went to Amy's Nana's 60th which was a pot-luck lunch in a country hall. Amy was already so exhausted from a busy week of travel and socialising; I really wasn't sure how it would go. The first couple of hours went okay - Amy flitted around the hall, dragging a couple of helium balloons and helped herself to cheerios and chips. However things got pretty loud with over ten children in the hall so we decided to take a little time-out and went for a walk down to the local school. Amy had a wee play in the playground. When we came back to the hall she ran ahead of me only to get her finger stuck in the door. She screamed blue murder and had a good cry. It was definitely time to leave for us yet there were family photos to be taken so we stayed on a little bit.
Amy was past it yet we managed to stay three and a half hours all up at the lunch which wasn' t too bad.
Sunday family hosted an all-day lunch. This was at Amy's favourite cousin's place again. It worked quite well because there was a huge backyard with a trampoline and we were able to take Amy outside when she needed a break from the indoor play. Her older cousin got a bit annoyed with Amy's attempts at joining in some complicated play and I had to explain to Amy's cousin that Amy only wanted to join in and didn't understand the "rules". We stayed for about four hours and it worked okay because we were able to move Amy inside and outside when she needed a change of scene. She had some quiet-time in the car towards the end too which she seemed to be grateful for - that quiet space which is hers that isn't in danger of being invaded.
All in all it was probably a successful week away with Amy. I say probably because there were two days there with the meltdowns and all in which we were pretty much stuck in a motel for large parts of the day as Amy needed a break from all the socialising. She was pushed and although I questioned it at the time, I think she has grown socially this week. She has mixed with newborns all the way through to seven year olds. She is only four years old and is still getting to know our extended family. I'm sure these trips away will get easier over time!
Sunday, May 3, 2009
Travelling with an ASD child
This afternoon we're heading up North to catch up with my husband's side of the family for a week. Travel unnerves many a parent. But traveling with a child on The Spectrum is like playing with fire. It cannot be helped; all the hard work that is put into the week around routines is unraveled and as the routine unravels; so does the child. I am already on tender-hooks and we aren't boarding the plane for another three and a half hours!
We've traveled a bit with Amy as our family are spread throughout New Zealand and Australia. We can stay with friends or family for short bursts but it seems to be best for everyone if we have our own accomodation for the long-term. We've mixed things up a bit this trip. For the first three nights we're staying with friends and family - two situations in which there are two children under the age of three. Both families have been sent a link to this blog. Like a true Mum of a child on The Spectrum I have packed sticker charts, stamps, and social stories in the hope of keeping our routine going as much as possible in the midst of staying with other families. The next four nights we have our own motel which will be great. Amy has nine cousins all up so it will be good to break up our visits with them all.
I guess something I've been thinking about lately is how one almost needs to ASD-proof a home just like you would if there was a baby coming into your home. If there is something that is obviously a target for ASD confrontation then it can be removed or the children can be given house rules for play that will work for everyone.
We went to one of Amy's friends birthday parties in the weekend. As soon as I saw the Wendy House in the corner and did a head count of four kids my stomach churned. Wendy Houses seem to be an invitation for space invasion on my daughter's part. Every time she enters one of those be they at Chipmunks or someone elses home, there is often an "incident". This usually involves the other child - if there are two - coming out in tears. Quite simply Amy's air bubble has been punctured in these situations and so she pushes, hits or kicks to get the other child out of her space. So on Saturday when all four kids wanted to pile into the Wendy House I made some rules with all the kids: "You can only sit in here all at once if you all sit still, otherwise you're all coming out!" I find as a Mum of an ASD child that I invariably end up on crowd control. Where some Mums can just leave their kids to mix happily wherever and whenever; this ASD Mum is pretty much always in the same room (unless things seem to be very settled on the play front).
One of the kids at the party was a little older than Amy and started hitting her with a cushion - in a somewhat playful manner. Of course most of the parents present at the party didn't see this and turned around in time to see our blonde-headed girl in her princess party frock lashing into this boy. So play-fighting is another cringe factor for me as an ASD Mum. A few weeks ago an older boy was throwing balls on to other children's heads at a swimming pool (yes, really). Sure enough, twenty minutes later Amy was doing the same and of course got carried away. She doesn't understand play-fighting and if she witnesses it she will end up hurting other children. It's that simple.
Toileting will no doubt take a back seat on our trip away this week. We struggle to get Amy on the toilet at home so we cannot have high expectations around her using a toilet during what will be an unsettling time for her. When she is toileting "well" she goes to the loo when prompted by us three times a day. When she is anxious she has no interest in going on the toilet and will hold on for hours. This is all to do with wees - poos are done any time, any place in her undies. If we can preempt a poo a nappy will be put on but there have been many surprises the last few weeks. Amy simply doesn't seem to care about soiling her pants. Her peers are already commenting about her accidents/nappy use which breaks my heart. Older children ask: Why is she still in nappies? I reply she's still learning how to use the toilet. Amy is oblivious to the outside interest around her toileting - which is a good and a bad thing. After our trip we will be introducing yet some more social stories around pooing on the loo.
So although I am looking forward to seeing friends and family up North I know it is going to be hard work to keep things rolling in the background so that Amy does do well and gets her needs met. I have told all those up North to not be offended if we have to leave social gatherings early - as there is going to be a bit of socialising within the week.
Every trip we go on I learn a little more about traveling with an ASD child. Our last trip in January to Auckland (to see my side of the family) was a real stretch for Amy. A week was way to long for her to share accomodation with two children under six. She was desperately fighting for her own space a lot of the time. It was hard, hard work. Yet I didn't prepare my family in any way. I am hoping by offering some insight into Amy's ASD via this blog that family and friends this trip will have some understanding. That's all I can hope for.
We've traveled a bit with Amy as our family are spread throughout New Zealand and Australia. We can stay with friends or family for short bursts but it seems to be best for everyone if we have our own accomodation for the long-term. We've mixed things up a bit this trip. For the first three nights we're staying with friends and family - two situations in which there are two children under the age of three. Both families have been sent a link to this blog. Like a true Mum of a child on The Spectrum I have packed sticker charts, stamps, and social stories in the hope of keeping our routine going as much as possible in the midst of staying with other families. The next four nights we have our own motel which will be great. Amy has nine cousins all up so it will be good to break up our visits with them all.
I guess something I've been thinking about lately is how one almost needs to ASD-proof a home just like you would if there was a baby coming into your home. If there is something that is obviously a target for ASD confrontation then it can be removed or the children can be given house rules for play that will work for everyone.
We went to one of Amy's friends birthday parties in the weekend. As soon as I saw the Wendy House in the corner and did a head count of four kids my stomach churned. Wendy Houses seem to be an invitation for space invasion on my daughter's part. Every time she enters one of those be they at Chipmunks or someone elses home, there is often an "incident". This usually involves the other child - if there are two - coming out in tears. Quite simply Amy's air bubble has been punctured in these situations and so she pushes, hits or kicks to get the other child out of her space. So on Saturday when all four kids wanted to pile into the Wendy House I made some rules with all the kids: "You can only sit in here all at once if you all sit still, otherwise you're all coming out!" I find as a Mum of an ASD child that I invariably end up on crowd control. Where some Mums can just leave their kids to mix happily wherever and whenever; this ASD Mum is pretty much always in the same room (unless things seem to be very settled on the play front).
One of the kids at the party was a little older than Amy and started hitting her with a cushion - in a somewhat playful manner. Of course most of the parents present at the party didn't see this and turned around in time to see our blonde-headed girl in her princess party frock lashing into this boy. So play-fighting is another cringe factor for me as an ASD Mum. A few weeks ago an older boy was throwing balls on to other children's heads at a swimming pool (yes, really). Sure enough, twenty minutes later Amy was doing the same and of course got carried away. She doesn't understand play-fighting and if she witnesses it she will end up hurting other children. It's that simple.
Toileting will no doubt take a back seat on our trip away this week. We struggle to get Amy on the toilet at home so we cannot have high expectations around her using a toilet during what will be an unsettling time for her. When she is toileting "well" she goes to the loo when prompted by us three times a day. When she is anxious she has no interest in going on the toilet and will hold on for hours. This is all to do with wees - poos are done any time, any place in her undies. If we can preempt a poo a nappy will be put on but there have been many surprises the last few weeks. Amy simply doesn't seem to care about soiling her pants. Her peers are already commenting about her accidents/nappy use which breaks my heart. Older children ask: Why is she still in nappies? I reply she's still learning how to use the toilet. Amy is oblivious to the outside interest around her toileting - which is a good and a bad thing. After our trip we will be introducing yet some more social stories around pooing on the loo.
So although I am looking forward to seeing friends and family up North I know it is going to be hard work to keep things rolling in the background so that Amy does do well and gets her needs met. I have told all those up North to not be offended if we have to leave social gatherings early - as there is going to be a bit of socialising within the week.
Every trip we go on I learn a little more about traveling with an ASD child. Our last trip in January to Auckland (to see my side of the family) was a real stretch for Amy. A week was way to long for her to share accomodation with two children under six. She was desperately fighting for her own space a lot of the time. It was hard, hard work. Yet I didn't prepare my family in any way. I am hoping by offering some insight into Amy's ASD via this blog that family and friends this trip will have some understanding. That's all I can hope for.
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