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Catherine - Interview 16

Age at interview: 54
Brief Outline: Catherine and her husband have two teenaged daughters, both of whom have been diagnosed with autism. Catherine has homeschooled her daughters using an ABA programme for several years.
Background: N/A

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Catherine and her husband have two daughters, both with autism on the severe end of the spectrum.  Catherine’s older daughter was slow to reach all milestones and had difficulties from age one.  She still has no speech but is learning to communicate using British Sign Language. Her sister’s early development appeared more normal but by 12-15 months it was clear that social and language milestones were very delayed.  She had frequent tantrums.  She started to have seizures at age 11.  With intensive one to one teaching (see below) she has developed some speech. 

Nine years ago, at ages 8 and 5, the girls started to be educated mainly at home, in programmes designed to teach language and related skills using an Applied Behavioural Analysis (ABA) approach.  This involves breaking down tasks into very small steps and generalising learned skills in different environments with different people. The girls have 25 hours of schooling each and are taught by a team of teachers with Catherine’s support.

For Catherine, one of the strengths of ABA is that success is measurable and sustainable.  She stresses the importance of using trained, competent teachers capable of creating a positive learning environment where the child is happy to co-operate.  The girls have remained involved with the local school and attend for brief periods each week at a level that is appropriate for them.

Catherine feels strongly that health professionals should offer parents constructive advice for helping their children’s development and not present a bleak future for children with autistic spectrum disorders. 

Catherine’s older daughter enjoys listening to music and going for long walks.  Her younger sister likes shopping and videos.  Both girls love physical play and car trips.

 

Catherine has run an ABA programme for several years to help develop her daughters' language skills.

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Catherine has run an ABA programme for several years to help develop her daughters' language skills.

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We startedtheir ABA programs quite late. Ideally you would want to start as soon as the child is diagnosable and these days that can be very young. My children probably could have been diagnosed around 12 to 15 months, and although it seems extreme to start one to one teaching of language and play skills at that age, in fact the best results come from the children who started very young.
 
The teaching is labour intensive, and their progress is the accumulation of many tiny steps. There is no pivotal skill that, once you teach it, everything else falls in place. We have to teach everything, with multiple examples, in multiple environments, with multiple people. It is very slow learning with my girls, but progress is steady. Once you know they can learn, you can’t stop teaching, even if the learning is very slow. Every little bit of language gives them a bit more of a life. You can’t have a life without language.
 
We started this teaching when my elder daughter was eight and my younger daughter had just turned 5. We had previously tried many different things, unsuccessfully, before we found the teaching approach we now use, Applied Behaviour Analysis, ABA for short.It is a curriculum and a teaching methodology that was developed by many researchers over decades and it’s been adapted to teach language and related skills to children and adults with all levels of autism.
 
The teaching ideally goes on seven days a week, every day of the year. Obviously we can’t manage that. We have teachers who come in for about 25 hours a week per child. We have receivedsome financial help from our local education authority to pay for this. Obtaining this funding was not easy. I try to do some teaching during the times that the teachers are not here. We have been doing the ABA programs for more than 10 years and we, as teachers, have learned a lot during that time. Most importantly, we’ve learned that you can’t teachwithout the child’s cooperation, without the child being happy to work with you, and learn from you. We work very hard to identify how to break down tasks into tiny steps, so the child can be successful on her own, without help, and then we gradually increase what she learns. The ABA programs have been the biggest help in my life with these girls, who are severely disabled and who will always be disabled. It makes all the difference to know that they can learn, albeit slowly, and that the language they learn gives them a bit better quality of life, and reduces the amount of care they will need in the future.
 
Before we started the ABA programs, we got advice from various professionals on how to teach our developmentally delayed children. Even the easiest tasks that they suggested were too difficult. We got check lists of things my daughter needed to learn to do, but no useful advice on how to teach her.  When I asked, for example, how to teach colouring with a crayon, I would be told “Oh, you put the crayon in her hand and hold her hand, and you make her scribble.” If only it was so easy! My children strenuously resisted any attempts to involve them with early learning activities. We failed with a lot of things, and by the time we started ABA my children didn’t want to have anything to do with teaching or learning. With the ABA programmes, we started a long process of getting the girls comfortable with the tutors. Gradually they came to associate the tutors with enjoyable experiences and w
 

Catherine's daughters understand spoken language better when it's combined with signs.

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Catherine's daughters understand spoken language better when it's combined with signs.

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I have two teenage daughters, and they both have severe autism, with IQ’s that were estimated to be less than 50. They are not yet able to learn language and related skills from their environment. Everything has to be taught in tiny steps with lots of repetition. Every word they know to say or sign or understand has been painstakingly taught in very labour intensive one to one teaching.
 
As they learn more, I hope that they can start to pick up some of their learning from the normal environment. My older daughter doesn’t talk at all, but is learning to use British Sign Language. She now has over 300 signs. She also learns to read the word card, and match it to a picture, for each new word. So she is able to make requests using a sign or word card or picture, though she strongly prefers signing. My younger daughter has some spoken language, and has learned a comparable number of words, but her pronunciation is sometimes poor. Both girls have a better understanding of spoken language when it is combined with signs or other visual information.
 

Catherine explains why she decided to home-school her daughters.

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Catherine explains why she decided to home-school her daughters.

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We have also met some excellent teachers, as well as some who could not cope. One of the best pieces of advice I received early on was to look for schools and teachers that see your child as an interesting challenge and something they really want to try. You may think that you will never find such a school, but they really do exist.
 
However we’ve always been careful not to expect the school to manage things with our daughters that the girls are not ready to do. There has to be a close connection between what is happening at home and at school. I would never want my child to be put into a situation at school that would cause her to fail. Mainstream teachers can sometimes be very keen to have your child conform to all routines; they need to understand that, for example, being able to sit through 10 minutes of circle time may take many months of approaching that goal through tiny steps.
 
We had some good experiences with mainstream schools but we quickly realised that our girls were not going to learn from being immersed in normal life. They really do need this intensive one to one teaching as well as some opportunity to be around typically developing children. The school involvement in recent years has been as little as one hour a week in the classroom or library, where my daughters work with their tutor at activities appropriate for their level. For them, it is a big thing to work alongside other children, quietly and without inappropriate behaviour.
 
I want to emphasize that my daughters are at the most severe end of the autism spectrum. All autistic children are different, and many of those who seem very disabled at two or three will go on to learn language and related skills much more quickly and easily than my daughters have done. But even children who end up being as severely affected as mine can learn, and this learning can continue well into adulthood.
 

Catherine wants her daughters to be out and about in public and explains to people that they can...

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Catherine wants her daughters to be out and about in public and explains to people that they can...

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I am grateful for all the publicity that autism gets these days because at least people have heard of it. I am always happy to have people meet my daughters, and feel strongly about getting them out in the community each day. We go to shops, to parks, on buses; we visit friends. I want my daughters to be out and about, to be part of life.  We work hard to teach the girls how to behave appropriately in public, and avoid putting them into situations they cannot handle.
 
What I tell people about my children is that they have severe language and learning problems, and that they can find it difficult to interact with others. It is generally easier if they let my daughters come to them, since even normal social interactions seem to be overwhelming. I explain a bit about what language my daughter does understand, and that gestures can help convey information. It helps to use only essential words, and to make sure they have my daughter’s attention. I ask people to remember to smile; they often frown because they are so worried about doing something wrong. Happy, confident people do tend to have an easier time with my daughters.
 
I also explain that my younger daughter can be physically aggressive if she is very angry or frustrated, that she might pinchor bite. I ask them to look for warning signs and make sure to remove themselves from striking range. At first it was very painful to say that, but you have to warn people. I find they take the advice and accept it.
 

Catherine describes how a comment made by a neurologist made a big difference to her. It was...

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Catherine describes how a comment made by a neurologist made a big difference to her. It was...

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We had some fortunate interactions with medical professionals around the time each girl was diagnosed. We were put into contact with a number of sensitive, honest, and very helpful doctors who understood that we wanted an answer and provided it. What I didn’t want at that time, and still don’t want, is somebody telling me what my child’s future is going to be. I will be eternally grateful to one senior, very experienced neurologist, who wrote in his report something to the effect of yes, my child had very severe developmental delays but he couldn’t predict the future; sometimes these children could surprise you. That one small comment made a big difference to me.
 
Not all of the people we came into contact with were so open minded. We met professionals who wanted to make sure that we “accepted” our child’s disability; for them that seemed to mean accepting their view of our child’s future. That is unnecessary and extremely unhelpful. Nobody can predict a child’s future. Even children with severe autism are educable. As a parent, that’s what you need to concentrate on.
 
When we were given the diagnosis, it was so important to hear about treatment options. Simply giving a diagnosis is not adequate; we needed to hear “and this is what we are going to do about it”.
 

Catherine talks about how her daily life has changed and how 'it is painful to give up everything...

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Catherine talks about how her daily life has changed and how 'it is painful to give up everything...

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I try not to think about the life we might have had, if they were typical children. What helps me is to focus on the work we do with them each day, trying to find more effective ways to teach.
 
Our lives have of course been changed unbelievably. No one expects to have one, never mind two disabled children. It is very painful to give up everything that you anticipated for your child. There are also so many worries, that parents of typical children never have. Every parent of a disabled child feels afraid to die, afraid of what will happen after they can no longer care for their child. I think about that every day. 
 
Our daily life has changed in that all the little things you might take for granted, can be much more difficult. I can never leave the girls alone in the house. Childcare for disabled teenagers can be hard to find and very expensive, so that you think twice before going out in the evening. Planning a holiday is like organising a military expedition. Both girls have sleeping problems and sleep deprivation can become a way of life.
 
We have had to change our house to make it more childsafe, with childproof locks on doors and windows; and easier to keep clean, e.g. wood floors, washable paint on the walls, machine washable rugs, and covers on our furniture. 
 
Going out with the girls can be stressful. They may wander off, or make sudden loud noises. We work very hard to get them to act appropriately in public. Right now we are trying to increase their tolerance for waiting in queues; if the wait is longer than about 3-4 minutes we leave the shop rather than risk a tantrum.  It can be very wearing to be stared at when my daughters act inappropriately, but I guess that people are just curious. Mostly, I’ve been impressed with peoples’ kindness, once they understand that my children have autism.
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