My first impressions of Charlie were two-fold. "My God, he's LONG," (58cm in comparison with my previous baby who was 48cm!) and "Where's his chin?!" Everyone was delighted with our latest edition, and he was declared perfect by the Paediatrician, although we had to stay in hospital for a couple of extra days as he seemed to be suffering an allergic reaction to the touch of the cot sheets on his skin! My only concern was that he seemed to be having difficulty breast-feeding, but I figured he would soon get the hang of it once home.

Once home he was an unusual baby. He simply slept; in fact he had to be woken to feed, and despite extensive help from the breast-feeding councillor, Charlie was unable to latch on properly...and seemed unable to co-ordinate his swallowing and sucking. Sadly I had to express milk and feed him with a bottle and even then he had great difficulty as he didn't seem to know what to do!

Charlie's sleepiness continued and his few wakeful periods were filled with inconsolable crying. At five weeks old our Health Visitor expressed concern over how floppy Charlie was. We had noticed that his arms dangled when we fed him, but we were too busy, and too exhausted to really think it odd. 

At ten weeks Charlie was seen by an important neurologist. She wrote on his notes, "I think it highly likely that Charlie has an intracranial abnormality," Oh. Told us a lot that did (NOT)! 

We began Physiotherapy at four months of age and have had the pleasure of working with a wonderful lady called Nerys ever since. Nerys has encouraged; and sometimes bullied, Charlie into rolling (he used to hate it and howled dismally as he was rolled around the room!), sitting and standing. At around the 'standing' level, Charlie decided that he quite enjoyed Physio after all and became willing to work with Nerys. He sat steadily at 10months, crawled at 14months and took his first steps.....to great applause ..... at 21m. Pretty good really!

As Charlie has developed, so more problems have become apparent. He did not babble, and when his hearing was thoroughly tested at 9 months of age, he was found to have some loss. To date he has undergone surgery twice to insert grommets, and he has been plagued with ear infections. At twenty-two months Charlie began speech therapy, and at twenty-six six months of age I heard the most special word in the world for the first time, when he said, "Mama." Now he is acquiring words daily, and to our delight is trying to put a couple together. His articulation is very poor due to his hypotonia, and he drools badly, but his pride when he makes himself understood, is as obvious as his frustration (BIG tantrums!) when he doesn't! To maximise his communication skills Charlie also uses Makaton sign language, and the whole family have enjoyed learning this!

Now, Charlie's visual delays seem to have righted themselves and he is a very sociable, smiley little man indeed. He does appear to have some difficulties judging depth, but he has just had his glasses updated after the latest eye test, and he was found to need much stronger lenses, so hopefully these will solve the problem! Charlie is very good about wearing his glasses and obviously gains some benefit from wearing them, as he will 'ask' to put them on.

Charlie has also experienced a degree of developmental delay, probably directly as a result of his Hypotonia. At his first developmental assessment at 10 months of age, he was seen to have global developmental delays and was referred for Early Intervention, known as Portage here in the UK.

Charlie does not as yet have a firm diagnosis for his problems although he does have a 'label' which was given to him in January of this year, by a geneticist. Charlie's major problems seem to stem from him having Hypotonia and Hyperflexible joints, which make it more difficult to control his muscles well, and also affect his speech. For this reason Charlie is described as having Hypermobility Syndrome, possibly a variant of Ehlers-Danlos Syndrome, known by some as Ehlers Danlos Hypermobility type, or type III. Hypermobility Syndrome/Ehlers-Danlos type III is a connective tissue disorder. However as there is no genetic testing for this type of the disorder, the diagnosis is given based on clinical findings alone. One of the signs of connective tissue disorder, is a stretch skin, and you should see what Charlie can do with his ears!!!!!!!

That is why Charlie has his own web-page (http://pages.hot-toast.com/theboss/) dedicated to him. In the three short years he has been part of the Radford family, he has brought such joy ; to us, his parents; and to his brother and sisters who adore him and do not care in the slightest that he is a bit 'slow' to walk and talk. They think that all toddlers have speech therapy in order to learn to talk!! Charlie has special needs..... and that means he is SPECIAL!!!!