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The Early Years
Basically Lewys was born with numerous medical problems. Initially our concerns were that he recovered from a number of congenital heart defects and this is still ongoing. His first 3 months of his life was spent in hospital and in his first two weeks he had 3 major heart operations. At first it was a case of him having a narrowing of the aorta, then a massive hole in his heart needed filling. It then took 3 months to wean him off his ventilator, by using a negative pressure box. A problem now exists, whereby he has an abnormal mitral valve. We have been told to expect this to be replaced some stage in his early life. Whilst recovering from his ops he had a few fits, but we have never been certain if this has been the cause of his later problems. Lewys as a Baby We never had much time to get to know him as a baby. Although after getting him home, our biggest concern was susceptibility to common illnesses. This was expected by his doctors, however it was quite a strain as every winter it meant he needed a fair amount of nursing. Later, we also worried that he couldn't sit up by himself and that he didn't learn to walk until he was about 2 years old. You could say that it was during the toddler stage we felt things were definitely not right. We always raised these concerns, however doctors at the time were a little lost and asked us to wait. First Reaction to His Physical Problems Well we said at the time that his main problems were physical, but I will point out that we now believe that those problems such as walking, sitting up and his general co-ordination, were just as much mental as physical. We were recommended to send him to a Nursery Unit, which specialised in handling young children with special needs. We were very pleased with the attention he had, although we were later disappointed not to continue his education there, because we were outside the area. Physical Skills
Lewys generally has very poor co-ordination and one would find that after 5 minutes walking he would need to be carried, otherwise he will lose direction and go very, very slow. When he tires he loses all ability to concentrate mentally. It has recently been noted by a geneticist that he has Poland's Syndrome. This generally means he is lacking certain pectoral muscles.He does not enjoy any ball games, as he can not compete. He knows his limitations and as soon as he sees others playing, he knows he would not fit in. He usually only enjoys his own company, although he will have a go at jigsaws and craft activities such as gluing and painting.
Lewys will not talk to you unless he wants to. As common with autistic children, he will talk at you rather than to you. Much of his talk will be to himself, in what we affectionately term as "babble". Unfortunately most children now notice this and this excludes him from participation. He generally feels vulnerable anyway when surrounded by children playing and this causes him to retreat within himself even more. At home, with people he is familiar with he gets on well; he is always very good, well behaved and loves playing with his computer games and cuddly toys. |
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