This weeks Special Saturday theme is toileting and our journey is still ongoing.
We started training Lucy when she was two years old, which I guess is about average in our part of the world. We tried a potty but she wouldn't sit on it, we tried a toddler toilet seat but she wouldn't use it. She hated not having a nappy on and despite trying every toilet training trick in the book we just couldn't get her to go.
We gave up and left it for six months before trying again. Again we were not successful. We tried several different types of potties, one lovely one looked just like a throne, she liked it, but wouldn't use it. We tried a Disney Princess toddler seat on the toilet with a special step. We even painted the littlest room in pretty pink so she would like it more in there. Every time we sat her down she would just scream the house down.
At three she started full time nursery. They suspended her a few weeks later and told us we could take her back when she was toilet trained. We'd tried to get away with it by using pull-ups but as Lucy was just not using the toilet at all she was soon found out.
So we just persevered and although it was a nightmare time we finally got her to pee on the toilet. She still screamed but at least she was peeing as well. After a while she got better and would stop the screaming and just go. We rarely had any accidents and pretty soon she was dry throughout the night too. Success.
But as we all know it's not all about the pees. The poops are still an ongoing problem. Lucy suffered terribly with constipation for many years, eventually we got it under control with diet and sugar water and once they were softer she would go more often and get less constipated. But where she goes is in her pants. The past year she has got better, but she still starts to poo in her pants and then goes to the toilet. At school she just never goes, she waits until she gets home. Unfortunately just the other day was the first time she pooped herself at school and because of her age I had to go and clean her up. It was just before home time so I took her straight home afterwards and hopefully her classmates do not know what had happened as children can be so cruel.
We have talked about this problem with her psychologist who has promised to get her investigated as she may have a problem where she does not actually feel the need to go until it's actually on it's way out. It does seem that way but Lucy doesn't understand. We have tried taking her to the toilet at the same time every day, about an hour after school, which is when the accidents tend to happen but even if we make her sit on the toilet she doesn't do anything. Then she will poop her pants afterwards.
Going out is awkward but we just take a pair of pants and some wipes and just hope that we can get her to the toilet as soon as possible when it happens. We don't know if this will problem will ever get any better, at the moment we don't have much hope.
Saturday, 26 May 2012
Wednesday, 23 May 2012
Walking Tall
When my daughter began her assessment for autism last year I never really knew what I would learn. It's all very different from twelve years ago when my eldest was diagnosed.
Lucy's assessment by the physiotherapist identified that she had a problem with walking and that it was likely to be causing the pain she gets in her knees at night. Yesterday I took her to a podiatrist who gave her a thorough examination and she came away with some inserts for her shoes. During the examination Lucy had to walk up and down the corridor several times. I knew she walked a little funny but didn't realise until I actually stood there with the Dr and observed just how unstable she actually is. The Dr commented on her weak core stability and her hypermobile joints, this is something picked up and commented on by everyone she sees so it must be pretty noticeable. I think it's possible that she can improve though, and she's getting plenty of help to do so.
I can't help thinking that her older brother has missed out a lot, I'm sure there is more that could have been done for him. Back then the focus was on language and communication, but both my kids have really good language skills so the problems are very complex with their communication.
It's good that the facets of the autistic spectrum are better understand these days and that more is being done to help those that have it. I hope that by continuing to raise awareness and further investigation that the future will be very bright.
Lucy's assessment by the physiotherapist identified that she had a problem with walking and that it was likely to be causing the pain she gets in her knees at night. Yesterday I took her to a podiatrist who gave her a thorough examination and she came away with some inserts for her shoes. During the examination Lucy had to walk up and down the corridor several times. I knew she walked a little funny but didn't realise until I actually stood there with the Dr and observed just how unstable she actually is. The Dr commented on her weak core stability and her hypermobile joints, this is something picked up and commented on by everyone she sees so it must be pretty noticeable. I think it's possible that she can improve though, and she's getting plenty of help to do so.
I can't help thinking that her older brother has missed out a lot, I'm sure there is more that could have been done for him. Back then the focus was on language and communication, but both my kids have really good language skills so the problems are very complex with their communication.
It's good that the facets of the autistic spectrum are better understand these days and that more is being done to help those that have it. I hope that by continuing to raise awareness and further investigation that the future will be very bright.
Friday, 18 May 2012
Bread and Fish
Sometimes it's like feeding the five thousand in my home. Not only do I have a big family but we have a small budget and an abundance of fussy eaters.
Big son (ASD) will eat most things, although he does eat one thing at a time on his plate, for example, he will eat all his carrots before starting on his potatoes or his meat. He is not keen on rice and he likes cheese in his mash, otherwise he's not that difficult to feed. Leila is not a fussy eater and will try anything, when smaller she liked to eat from my plate, the rest of the family complained but I think it's turned out well because now she will try anything, she's not afraid of new things. Lucy (ASD) on the other hand has the same food over and over because she doesn't like trying new things. I'm not too worried because she eats a lot of fruit and vegetables. The thing she lacks most is dairy but she does eat cheese so that's something. She only eats chicken and fish which limits her somewhat. Put something new in front of her and she's not even willing to try it. Joseph was a late weaner, he didn't like purees so I couldn't really give him much other than baby rusks until he was seven months old when he started to eat soft foods he could pick up himself. He loves his vegetables and will try most things I give him. I guess the weirdest thing about him is he doesn't like biscuits! All the little ones love bread with nothing on it.
Daddy is allergic to fish and mummy will eat anything!
Big daughter has always been the biggest problem eater in the house, as a child she went through a stage of refusing anything but beetroot. It didn't last long but that's how it's been, she'll fall in love with a food eat it until she's sick of it, then never touch it again. She complains about everything I cook, even if she really likes it (this is really lovely but it's not quite hot enough) She has had counselling over her eating habits, visited nutritionists, been given supplement milkshakes, but nothing makes any difference. She just has a weird relationship with food, I guess it will be with her forever.
I often find myself cooking at least three different meals at a time which can be quite stressful. The only thing we all eat is pizza, but we don't have it too often because it's not so healthy (and mummy doesn't enjoy it as much as everyone else)
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Big son (ASD) will eat most things, although he does eat one thing at a time on his plate, for example, he will eat all his carrots before starting on his potatoes or his meat. He is not keen on rice and he likes cheese in his mash, otherwise he's not that difficult to feed. Leila is not a fussy eater and will try anything, when smaller she liked to eat from my plate, the rest of the family complained but I think it's turned out well because now she will try anything, she's not afraid of new things. Lucy (ASD) on the other hand has the same food over and over because she doesn't like trying new things. I'm not too worried because she eats a lot of fruit and vegetables. The thing she lacks most is dairy but she does eat cheese so that's something. She only eats chicken and fish which limits her somewhat. Put something new in front of her and she's not even willing to try it. Joseph was a late weaner, he didn't like purees so I couldn't really give him much other than baby rusks until he was seven months old when he started to eat soft foods he could pick up himself. He loves his vegetables and will try most things I give him. I guess the weirdest thing about him is he doesn't like biscuits! All the little ones love bread with nothing on it.
Daddy is allergic to fish and mummy will eat anything!
Big daughter has always been the biggest problem eater in the house, as a child she went through a stage of refusing anything but beetroot. It didn't last long but that's how it's been, she'll fall in love with a food eat it until she's sick of it, then never touch it again. She complains about everything I cook, even if she really likes it (this is really lovely but it's not quite hot enough) She has had counselling over her eating habits, visited nutritionists, been given supplement milkshakes, but nothing makes any difference. She just has a weird relationship with food, I guess it will be with her forever.
I often find myself cooking at least three different meals at a time which can be quite stressful. The only thing we all eat is pizza, but we don't have it too often because it's not so healthy (and mummy doesn't enjoy it as much as everyone else)
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This post is for Special Saturday, an online ‘global’ campaign that aims to raise awareness of children and adults living with special needs.
Please join the cause by joining the facebook page -https://www.facebook.com/SpecialSaturdayhttps://www.facebook.com/SpecialSaturday
Follow on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Read and follow the Special Saturday Blog -http://specialsaturday.org/home
Wednesday, 16 May 2012
School Worries
Our girl's school is being forced into an academy. They are going by Ofsted reports from 2005 to 2009 when the school was doing really badly. There has been a new head teacher there since 2008 and he has turned the school around. In 2010 the school was scored as a Good school, with the nursery as Outstanding.
An outstanding school is allowed to become an academy in it's own right, still run by it's current governing board. If it is forced into an academy then then an outside source is brought in to run the school.
It's difficult to get out of academy status because the Education Secretary Michael Grove is wanting all schools, primary and secondary to become academies. Some are trying to fight it, many are losing.
Our school is a good school and the staff are amazing, it's better now than it has ever been (and I know having used the school for the last 19 years) Losing it's current status and being taken over by an outsider probably will have a real detrimental effect on the school.
I could go on about all the bad things about academies but I won't, not here. I just wanted to express my worries about what this means for Lucy.
At nursery it was picked up that Lucy was different from the other children and her teacher gave her extra help to fit in, this continued through to reception class. Then in year one Lucy's teacher called me in for a meeting and suggested that Lucy might be autistic. I already knew, but although I wasn't trying to bury my head in the sand, or deny it I just wanted it to be picked up by someone else so I could be sure. This was the start of Lucy's assessment and during the next six months she received a diagnosis of high functioning autism.
Her teacher has been fantastic and so has the school SENCO. Lucy's problems are different to other kids with special needs, it is so hard to understand what she actually needs but working together she now has a great plan in force at the school which has improved her happiness both there and at home. She also gets extra help in school from outside sources, for example physiotherapy and occupational therapy.
An academy school can still provide all these resources if they wish. They will be readily available for them that want to pay for them. Of course, who knows if they will pay for them? If an outsider does come in are they going to be concerned about Lucy's needs? Perhaps they will think she will be better off in a special school? (This is what happened to my eldest son when his school couldn't implement the correct help for him)
At the moment my worries are heavy on my heart. I do not want the school to change, it's great just as it is.
I will be praying that the outcome is a good one.
An outstanding school is allowed to become an academy in it's own right, still run by it's current governing board. If it is forced into an academy then then an outside source is brought in to run the school.
It's difficult to get out of academy status because the Education Secretary Michael Grove is wanting all schools, primary and secondary to become academies. Some are trying to fight it, many are losing.
Our school is a good school and the staff are amazing, it's better now than it has ever been (and I know having used the school for the last 19 years) Losing it's current status and being taken over by an outsider probably will have a real detrimental effect on the school.
I could go on about all the bad things about academies but I won't, not here. I just wanted to express my worries about what this means for Lucy.
At nursery it was picked up that Lucy was different from the other children and her teacher gave her extra help to fit in, this continued through to reception class. Then in year one Lucy's teacher called me in for a meeting and suggested that Lucy might be autistic. I already knew, but although I wasn't trying to bury my head in the sand, or deny it I just wanted it to be picked up by someone else so I could be sure. This was the start of Lucy's assessment and during the next six months she received a diagnosis of high functioning autism.
Her teacher has been fantastic and so has the school SENCO. Lucy's problems are different to other kids with special needs, it is so hard to understand what she actually needs but working together she now has a great plan in force at the school which has improved her happiness both there and at home. She also gets extra help in school from outside sources, for example physiotherapy and occupational therapy.
An academy school can still provide all these resources if they wish. They will be readily available for them that want to pay for them. Of course, who knows if they will pay for them? If an outsider does come in are they going to be concerned about Lucy's needs? Perhaps they will think she will be better off in a special school? (This is what happened to my eldest son when his school couldn't implement the correct help for him)
At the moment my worries are heavy on my heart. I do not want the school to change, it's great just as it is.
I will be praying that the outcome is a good one.
Saturday, 12 May 2012
Special Friendships, A Special Saturday Post
When I was expecting my first born child I became friends with another woman expecting her first child too. Our children became good friends and grew up together. They went to different schools and had different friends but always had time for each other.
When my son's differences started becoming more apparent and most of his small friends just didn't understand him or want anything to do with him, this one friend always stuck by him. He still called around to play, stayed over, had my son stay over at his and they enjoyed each others company.
My son gradually got worse and the other lad became more grown up, but he still took time out to check up on his friend.
When he was sixteen my son's friend joined the army, and he's still there seven years later. He's not around much these days but he still takes the time to pop by and visit my son, his friend. I truly appreciate this young man's friendship with my son, and I'm sure my son appreciates it too.
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This post is for Special Saturday, an online ‘global’ campaign that aims to raise awareness of children and adults living with special needs.
Please join the cause by joining the facebook page -https://www.facebook.com/SpecialSaturdayhttps://www.facebook.com/SpecialSaturday
Follow on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Read and follow the Special Saturday Blog -http://specialsaturday.org/home
Thursday, 10 May 2012
No longer a Baby!
Baby number 5 is growing so fast, I can't really call him a baby anymore. Such a sad time when they reach that stage, especially when you know there will be no more babies. It doesn't matter, I've been here five times now and still it feels like I'm losing something precious. But, it doesn't last, all I have to do is remember what is to come. So much more growing and learning, so many firsts to achieve, so much to look forward to as my little man transforms in front of my very eyes into a, well, not so little man.
I still look at my girls now four and six and it's hard to believe how quick they are growing, but we still have so far to go.
Even when I look at my grown-up children I can see that there is still so much they have to experience, still more growing, it never ends, the changes, the things to look forward to (grandchildren???)
So baby number five now has a bed instead of a cot, he can walk and 'nearly' talk. He is becoming more independent every day......but he still gives the bestest cuddles and kisses ever.
Yes, the baby days are gone (forever) but there is still so much more to come.
I still look at my girls now four and six and it's hard to believe how quick they are growing, but we still have so far to go.
Even when I look at my grown-up children I can see that there is still so much they have to experience, still more growing, it never ends, the changes, the things to look forward to (grandchildren???)
So baby number five now has a bed instead of a cot, he can walk and 'nearly' talk. He is becoming more independent every day......but he still gives the bestest cuddles and kisses ever.
Yes, the baby days are gone (forever) but there is still so much more to come.
Saturday, 5 May 2012
No Time For Grief
I never really knew what grief felt like until I lost my mum and little brother within a week of each other and both quite suddenly. I don't deal very well with grief, I don't think many people do, it's one of those awful things we all have endure sometimes, and it hurts.
I do not feel grief over my children's disabilities. I refuse to feel that sad over two beautiful and amazing children. I understand that their lives are going to be very different, that they will miss out on much of what is called 'normal' but they are here and they are mine and I will give them the very best they deserve.
I guess that's easy for me to say because my children are not severely disabled, they can walk and talk and mostly their disabilities are invisible. With the right help they could even live normal lives, school, relationships, jobs, they are all achievable.
Would I feel different if they were severely disabled, if their lives were more of a shell of what we consider a normal life? If they could not communicate, if they could not return my hard work with love and smiles? If each day was a struggle of survival?
I hope I would not feel differently, I hope I could still give them all I possibly could, make them comfortable and as happy as possible, and love them unconditionally no matter what. I hope I could leave the grief for when they would no longer be here rather than grieving for the lives they should have.
My cousin was born just a year after me to my mum's brother. She was born with Downs Syndrome. I grew up with her and treated her just like my other cousins even though she was a little rougher and didn't know when to stop. I don't see her often now but I've been in touch most of her life. I saw her a couple of weeks ago, she's now 45 years old. She looks well, she looks beautiful. She is happy, she has had a good life. She has had an education, many holidays, lots of friends, she has a much better social life than me. She has not had a lover, she has not had children, she has not had a 'real' job, she still lives at home and depends very much on her family. I think her family are amazing, they've done a wonderful job in giving this lady the best life she possibly could, they have always been positive, even when times were tough.
There is no time to grieve for the way things could have been. I will leave grief for after life has ended. It's hard enough to deal with then.
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I do not feel grief over my children's disabilities. I refuse to feel that sad over two beautiful and amazing children. I understand that their lives are going to be very different, that they will miss out on much of what is called 'normal' but they are here and they are mine and I will give them the very best they deserve.
I guess that's easy for me to say because my children are not severely disabled, they can walk and talk and mostly their disabilities are invisible. With the right help they could even live normal lives, school, relationships, jobs, they are all achievable.
Would I feel different if they were severely disabled, if their lives were more of a shell of what we consider a normal life? If they could not communicate, if they could not return my hard work with love and smiles? If each day was a struggle of survival?
I hope I would not feel differently, I hope I could still give them all I possibly could, make them comfortable and as happy as possible, and love them unconditionally no matter what. I hope I could leave the grief for when they would no longer be here rather than grieving for the lives they should have.
My cousin was born just a year after me to my mum's brother. She was born with Downs Syndrome. I grew up with her and treated her just like my other cousins even though she was a little rougher and didn't know when to stop. I don't see her often now but I've been in touch most of her life. I saw her a couple of weeks ago, she's now 45 years old. She looks well, she looks beautiful. She is happy, she has had a good life. She has had an education, many holidays, lots of friends, she has a much better social life than me. She has not had a lover, she has not had children, she has not had a 'real' job, she still lives at home and depends very much on her family. I think her family are amazing, they've done a wonderful job in giving this lady the best life she possibly could, they have always been positive, even when times were tough.
There is no time to grieve for the way things could have been. I will leave grief for after life has ended. It's hard enough to deal with then.
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This post is for Special Saturday, an online ‘global’ campaign that aims to raise awareness of children and adults living with special needs.
Please join the cause by joining the facebook page -https://www.facebook.com/SpecialSaturdayhttps://www.facebook.com/SpecialSaturday
Follow on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Read and follow the Special Saturday Blog -http://specialsaturday.org/home
Thursday, 3 May 2012
A Kissin and a Huggin!
Last night as I was taking Lucy to bed she turned and kissed me, then gave me a lovely hug. Nothing unusual you might think, but I was really taken aback. I can't remember the last time she did that. It's not that we don't kiss and cuddle, but I have to ask, and she has to accept, and even then it's like hugging an ironing board. For her to initiate the process is a real bonus.
Tomorrow Lucy will have her first occupational therapy session at school, I will get feedback on how she gets on. She is already getting physiotherapy at school and has now asked to join gym club, this is great progress seeing as just a few months ago I had difficulty getting her to go into school on days with p.e. She is gaining confidence in her own body.
In a couple of weeks we have an appointment with the podiatrician for her inserts. This is a long time in coming as I accidently turned up on the wrong day last time which was last October. So maybe if we can get her physically corrected then maybe other things will improve too. I live in hope.
Tomorrow Lucy will have her first occupational therapy session at school, I will get feedback on how she gets on. She is already getting physiotherapy at school and has now asked to join gym club, this is great progress seeing as just a few months ago I had difficulty getting her to go into school on days with p.e. She is gaining confidence in her own body.
In a couple of weeks we have an appointment with the podiatrician for her inserts. This is a long time in coming as I accidently turned up on the wrong day last time which was last October. So maybe if we can get her physically corrected then maybe other things will improve too. I live in hope.
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