This is what we wrote at the end of April 1997

1) Paul's Birth and Early Years

Paul's birth was normal but his mother had high levels of red cell antibodies during pregnancy. He was of above average weight and size when he was born but gained weight very slowly. He started off in the 90th centile and declined over his first eighteen months until he was in the 3rd centile. We were worried about this and consulted the clinic. He also grew very slowly and there was a similar decline in his height relative to the average. He developed a squint which he had not had when he was born. He had an operation on his eyes when he was three and this seemed to improve his squint.

2) Difficulties first noticed

From about 18 months we became increasingly worried about his general development as he did not seem to be progressing at the rate his older brother and three sisters had.

3) As a result

We voiced our concerns to the clinic, and his GP. We had an interview with a consultant when Paul had just turned three.

4) Any help or advice?

We had advice from an educational psychologist and help and advice from a speech therapist

5) (a) General Health

In general Paul is very healthy although he still gets the bouts of diarrhoea which he has had since birth. He has a squint which was operated on in October 1995 and was seen regularly by an orthoptist for a time, who checked his eyesight.

 (b) Physical ability

Paul is good at climbing and can now walk and run with no problems. When he was younger he used to fall over frequently particularly when he tried to run. He always seemed to bang his forehead. Paul can scribble with a pencil.

 (c) Independence

Paul seems to have developed very little independence except for a limited ability to forage for food, tries to put on the computer, television, etc and to put in video tapes. He does not seem to learn when he is shown how to do something.

 Virtually everything has to be done for Paul. He can feed himself but will often not bother to eat much without being fed some of the time. He generally co-operates with being dressed and undressed. Washing his hands is difficult and also brushing his teeth. However in the last six months or so he has got better and will now open his mouth for a second or two.

 Paul has toileting problems. He has some control over his bladder but has never shown any inclination to use a potty or the toilet on his own. He will urinate in a toilet or potty if placed on it by an adult. If not placed on the toilet or potty he will wet himself. He seems to have little control over his bowel movements and invariably dirties himself even if he has been placed on a potty or toilet a short while previously. He does not seem to realise that this is not what he should do. This is reflected in a general lack of awareness of what to do in a social situations.

 (d) Communication Skills

Paul can ask for what he wants by name using a single word e.g. drink, book, computer, cheese. However he prefers to grab an adults hand to pull them to what he wants.

 He knows a vast number of phrases and sentences which he has learnt from videos and audio cassettes. Most of his speech involves reciting these (echolalia) . He will occasionally use some of these phrases at appropriate times. e.g. when we were in a train he said "We are now arriving at Pencaster Station" and "Thank you for travelling with British Rail. Please make sure you leave nothing behind on the train". In the bath he might say "Jess hated having a bath. He hated soap. He hated shampoo" (All these phrases are from Postman Pat).

 Sometimes he substitutes names and puts his own name or the name of someone else in the family instead in one of these phrases. He also sometimes substitutes a different noun for one of the nouns in the phrase.

 Paul does not give a lot of eye contact. However on occasions he does. For instance when his mother does singing with him, he laughs and looks at her for almost the whole song. He also does not give any spontaneous greetings or even acknowledge that somebody he knows has arrived. His father tries to get him say "Hello Daddy" when he comes home. Paul used to say it with encouragement but seemed more and more reluctant to say anything. He certainly doesn't want to stop any activity he is engaged in. However recently his mother has shown him the written words Hello Daddy, and he will now say the words. However we don't think he understands the meaning of what he has said or the meaning of the situation.

 (e) Interests and activities at home

Paul likes ( seems to be addicted to!) videos and audio cassettes of stories and songs.. he gets fixed on one of these e.g. Postman Pat and likes to hear it over and over again. He uses the computer for children's programmes e.g. DK Children's Dictionary, Winnie the Pooh and World of nature. He also likes to look at books in a repetitive way and will repeatedly bang these with his hand. He often tries to act out parts of videos, audio-cassettes or stories he knows.

 From a very young age, Paul showed an ability to recognise words. When he was about two years old, we noticed that he could tell which video was which even though they looked exactly the same apart from the name. He can now match many words to objects or pictures.

 (f) Relationships at home

Paul knows all his family and their names. He enjoys rough and tumble with Frank , his older brother. He is very loving and enjoys cuddles ( although he is sometimes a bit rough). He will readily give kisses when asked.

 (g) Interests and activities outside the home

Paul loves going swimming. He is taken to the shops or to the park but does not want to walk and much prefers to be carried. Sometimes in the park he will start running and just keep going until he is out of sight. He doesn't seem to be distressed about losing sight of his parents. He enjoys going on slides, etc in the park. He likes climbing but seems to have little sense of danger in many situations.

 (h) Behaviour at home

Paul does not understand a lot of what is going on in the household and takes no interest or part in family times. He can be made to sit at the table when we have a family meal but does not take any notice of anyone else. He chatters away to himself in his own world all the time and will try to get away as soon as he can.

 In many ways Paul seems to have retreated more into his own world recently. For instance, when he was younger he would try to kick a ball in the park and join in to some extent with this family activity. When we try this now he takes no interest and remains in his own world i.e. running around on his own and talking to himself. He also used to copy words more readily. For example he would say hello or thank you when asked to say them. Now he seems to look blankly and not understand what he is meant to do. We say Grace before family meals and Paul used to try and join in and looked at other people. Now he just ignores what is going on and won't join in at all.

 i) Progress at school

Paul enjoyed his Nursery School (A Special School) and made some progress.

 6) Comparison with children of the same age.

Overall Paul is considerably behind children of his own age and in many areas is probably at the level of a much younger child. His language, communication and social skills are very poorly developed. He cannot answer or ask questions, and he cannot say what is wrong when he is upset. He does seem either to be able to say what has happened to him or to be able to relate to things that have happened to him. He seems to understand very little of what is said to him.

 7) Our concerns

We are naturally worried about Paul's development and in particular the fact that his prospects look less bright than just a year ago. He has progressed very slowly in many areas and in some areas hardly at all. In some areas he seems to have regressed. We are also concerned about the effect that all this situation might have on the rest of the family.

 8) Paul needs to be taught by professionals who are knowledgeable and experienced with children with his type of difficulty. He will need individual attention and teaching in a small group. He will need considerable help from teachers , speech and language therapists and any other professionals who may be appropriate. We are interested in the Lovaas Method of Therapy and we think it might be helpful for Paul. We would like him to have some of this therapy.