05-13-2006, 01:07 PM
Living with an autistic person can put a huge strain on family life as members struggle to cope with the demands and frustrations the disorder raises. Support for families remains low with many mums, dads and siblings finding themselves having to cope largely on their own. Here Michelle Mould, from Long Stratton, reveals what life is like living with her 11-year-old autistic daughter Rosie.
The day starts well because Rosie wakes in a good mood. She is happy to say good morning to us all, unlike other mornings where she will screech “no morning”.
It is probably safe to say that this first interaction is a good indication as to how the whole day will progress. Breakfast is the usual, Marmite with no butter on toast. This ritualistic behaviour pervades all food encounters for Rosie.
At 7.30am I enter the playroom with Rosie to begin the day's sessions in home education that are her schooling at present and have been for the last five years. Rosie skips in happily with her two Teletubby dolls.
Today, she is Laa Laa and I am Po. She will refuse to answer if called anything else.
Before I know it I have to give the five-minute warning that we need to get in the car to collect Joshua (aged 12) from high school. As I dash up the stairs I realise that I have been duped into a false sense of security. My angel has in fact had a toilet accident and has found that the shower gel makes a lovely pattern on her pillows, clothes and everything in sight.
By 2.45pm we are out of the door. The next few hours become a dividing nightmare between two very different children.
We stop at the local supermarket on the way home. Rosie will only walk backwards. We get many funny looks. I am not bothered. If walking backwards means we get the job done then so be it.
Daddy comes home and goes out again for his adult education evening (he's learning French).
Putting Rosie to bed I see the beginnings of a teenager. How scary is that?
But I know now that I have the skills to cope and that she has the skills to move forward. Goodnight sweetheart.
Wednesday, May 3
Oh dear, not such a good start. Rosie makes moaning sounds when we greet her this morning.
She is able to work in her playroom, but is agitated by the slightest thing. For instance she wants the Laa Laa doll, which is still in her bedroom, and refuses to work until it is fetched. Joshua is unable to speak in the car home from school as every attempt is thwarted by Rosie squealing, “no talking”.
I notice that she keeps pressing a finger on a tooth. Is this a baby tooth that is being pushed out by the adult tooth? If so, then this physical event will overshadow all else in her life for the next however many days.
Most typical children will have learnt to deal with this by the age of 11.
My child still reverts to the infant state of crying to show discomfort. So a child who can read at year four level and who is capable of speech now reverts to the baby-like stage due to sensory perceptual differences.
The next few days could be hard. Finally at bedtime she shows Joshua her wobbly tooth. I know that this means she will be taken over by the sensory experience and that all communication and interaction and academic work will be harder due to lack of concentration and preoccupation with this tooth.
How can something so small have such an effect? I suppose you only have to think back to the teething stage of your own child and this will give some idea of what is to come for us all in this family.
Thursday, May 4
My head is pounding. The tooth and the soiled Huggies have interrupted the night's sleep. Yet again Rosie ends up sleeping with me and poor Dad ends up in her single bed.
Surprisingly Rosie copes in the playroom and gets stuck into some addition, spellings, reading, rhyming words and other activities.
I notice that she is getting spotty on her forehead - the dreaded hormones of early adolescence. I try to wipe her face with some face wipes for teenage skin. This is greeted with much protest. Just as she hates face washing she also hates brushing her teeth, brushing or washing her hair and all due to sensory issues.
Friday, May 5
The day goes along as usual for us. In the playroom for a couple of hours from 8am to 10am, and then while Rosie works with other helpers from 10am to 2pm I have a chance to try to co-ordinate some transition documents written by various professionals and parents of the ASD Steering Group. It is hoped this will help all children and young people with ASD when they have to make moves from one setting to another or within the school day.
In a flash it is time to collect Joshua from high school and as I tidy up the playroom Rosie decides to strip off in the garden down to her waist. Granted it is a nice warm day, but at 11 years old this is no longer appropriate. I dash to get her a top before the neighbours see. As I descend the stairs I notice the discarded knickers (soiled again) and realise this is a clean-up job not just a get-dressed-again job.
Saturday, May 6
Reading back my diary a sadness sets in. This is not an application for Disability Living Allowance. Where are the good points? Well this morning I have to say proudly that Rosie and I got up before the other two lazy members of our household.
She could see that I was getting ready to go to Tesco and was insistent she would come with me. Because she was motivated she allowed me to both wash her face and brush her hair with minimal fuss.
Rosie likes Tesco although she hates the tannoy. She was an angel all the way round the store (didn't walk backwards which has been the norm) for a large weekly shop. Joshua has been joining in her games all day. This is no easy thing when you are a 12-year-old boy and your sister likes chase-me games and games that mimic her DVDs. What a star he is. What a star she is.
Sunday, May 7
What a quiet day. Rosie is left to do her own thing and Josh is out playing with friends. I get on with my presentation for the Early Support Programme, which helps parents of children from birth to five years. At the same time I plan my essay for my degree course and look at what's to go into the home programme for Rosie for the next week.
Monday, May 8
Rosie is learning to talk on the telephone today. It is lovely to hear her voice and the words said so beautifully.
“What are you doing today mummy?” she asks me. I reply, “I am doing the washing up.”
I can hear the sound of Velcro and her helper saying, “Can you find the words washing up?” This may seem very limited to some people, but Rosie is learning that just because you can't see someone they are still around and that they are doing things that she cannot see.
I feel very proud of my clever daughter. I know that with the right care and input she can achieve so much. I am sure she will be learning for many years to come, but then so will I.
From norwich evening news.
The day starts well because Rosie wakes in a good mood. She is happy to say good morning to us all, unlike other mornings where she will screech “no morning”.
It is probably safe to say that this first interaction is a good indication as to how the whole day will progress. Breakfast is the usual, Marmite with no butter on toast. This ritualistic behaviour pervades all food encounters for Rosie.
At 7.30am I enter the playroom with Rosie to begin the day's sessions in home education that are her schooling at present and have been for the last five years. Rosie skips in happily with her two Teletubby dolls.
Today, she is Laa Laa and I am Po. She will refuse to answer if called anything else.
Before I know it I have to give the five-minute warning that we need to get in the car to collect Joshua (aged 12) from high school. As I dash up the stairs I realise that I have been duped into a false sense of security. My angel has in fact had a toilet accident and has found that the shower gel makes a lovely pattern on her pillows, clothes and everything in sight.
By 2.45pm we are out of the door. The next few hours become a dividing nightmare between two very different children.
We stop at the local supermarket on the way home. Rosie will only walk backwards. We get many funny looks. I am not bothered. If walking backwards means we get the job done then so be it.
Daddy comes home and goes out again for his adult education evening (he's learning French).
Putting Rosie to bed I see the beginnings of a teenager. How scary is that?
But I know now that I have the skills to cope and that she has the skills to move forward. Goodnight sweetheart.
Wednesday, May 3
Oh dear, not such a good start. Rosie makes moaning sounds when we greet her this morning.
She is able to work in her playroom, but is agitated by the slightest thing. For instance she wants the Laa Laa doll, which is still in her bedroom, and refuses to work until it is fetched. Joshua is unable to speak in the car home from school as every attempt is thwarted by Rosie squealing, “no talking”.
I notice that she keeps pressing a finger on a tooth. Is this a baby tooth that is being pushed out by the adult tooth? If so, then this physical event will overshadow all else in her life for the next however many days.
Most typical children will have learnt to deal with this by the age of 11.
My child still reverts to the infant state of crying to show discomfort. So a child who can read at year four level and who is capable of speech now reverts to the baby-like stage due to sensory perceptual differences.
The next few days could be hard. Finally at bedtime she shows Joshua her wobbly tooth. I know that this means she will be taken over by the sensory experience and that all communication and interaction and academic work will be harder due to lack of concentration and preoccupation with this tooth.
How can something so small have such an effect? I suppose you only have to think back to the teething stage of your own child and this will give some idea of what is to come for us all in this family.
Thursday, May 4
My head is pounding. The tooth and the soiled Huggies have interrupted the night's sleep. Yet again Rosie ends up sleeping with me and poor Dad ends up in her single bed.
Surprisingly Rosie copes in the playroom and gets stuck into some addition, spellings, reading, rhyming words and other activities.
I notice that she is getting spotty on her forehead - the dreaded hormones of early adolescence. I try to wipe her face with some face wipes for teenage skin. This is greeted with much protest. Just as she hates face washing she also hates brushing her teeth, brushing or washing her hair and all due to sensory issues.
Friday, May 5
The day goes along as usual for us. In the playroom for a couple of hours from 8am to 10am, and then while Rosie works with other helpers from 10am to 2pm I have a chance to try to co-ordinate some transition documents written by various professionals and parents of the ASD Steering Group. It is hoped this will help all children and young people with ASD when they have to make moves from one setting to another or within the school day.
In a flash it is time to collect Joshua from high school and as I tidy up the playroom Rosie decides to strip off in the garden down to her waist. Granted it is a nice warm day, but at 11 years old this is no longer appropriate. I dash to get her a top before the neighbours see. As I descend the stairs I notice the discarded knickers (soiled again) and realise this is a clean-up job not just a get-dressed-again job.
Saturday, May 6
Reading back my diary a sadness sets in. This is not an application for Disability Living Allowance. Where are the good points? Well this morning I have to say proudly that Rosie and I got up before the other two lazy members of our household.
She could see that I was getting ready to go to Tesco and was insistent she would come with me. Because she was motivated she allowed me to both wash her face and brush her hair with minimal fuss.
Rosie likes Tesco although she hates the tannoy. She was an angel all the way round the store (didn't walk backwards which has been the norm) for a large weekly shop. Joshua has been joining in her games all day. This is no easy thing when you are a 12-year-old boy and your sister likes chase-me games and games that mimic her DVDs. What a star he is. What a star she is.
Sunday, May 7
What a quiet day. Rosie is left to do her own thing and Josh is out playing with friends. I get on with my presentation for the Early Support Programme, which helps parents of children from birth to five years. At the same time I plan my essay for my degree course and look at what's to go into the home programme for Rosie for the next week.
Monday, May 8
Rosie is learning to talk on the telephone today. It is lovely to hear her voice and the words said so beautifully.
“What are you doing today mummy?” she asks me. I reply, “I am doing the washing up.”
I can hear the sound of Velcro and her helper saying, “Can you find the words washing up?” This may seem very limited to some people, but Rosie is learning that just because you can't see someone they are still around and that they are doing things that she cannot see.
I feel very proud of my clever daughter. I know that with the right care and input she can achieve so much. I am sure she will be learning for many years to come, but then so will I.
From norwich evening news.