Kaj is slowly learning to do things, he recognises his toys and he spends a lot of time interacting with all the rescue pets we have, especially our African Grey Parrot, Oliver.
The bird will make a noise, whistle and Kaj will try to imitate, and vice versa, so I figure the first one to learn a word will teach the other. In March 2001, Kaj was very sick and I took him to see the doctor, they gave him antibiotics and sent us home, within a few days he was having difficulties breathing, so I took him straight back to the doctor, who took one look at him and called the ambulance. He was rushed to the childrens ward, where they helped him breathe and made him more comfortable, it was very frightening, but knowing that Kaj picks up on our mood, we had to try to think rationally. He was eventually allowed to go home again late that night and all seemed to be better, and his fever broke
Sadly for the whole family we had a telephone call to say that my fiances father had passed away in the night.
Kaj is now still getting physiotherapy once a month, from the professionals, and I put him through his paces each day. He has been accepted for a program called Portage, which means that a team of special therapists will come to our house and try to teach Kaj some basic skills using toys and play. I will update as soon as the program starts



8th February 2002

Well its a long time since the last update, but things are kind of at a stand still when it comes to progress. Kaj is now just over 2 years old and can sit up by himself. He can not crawl, walk or even speak right now, but we are working each day to help him master these things. We get a visit from the portage team once a week, and during this time they try to teach him skills, with toys to help him. He learns very quickly how to operate the toys, but can find the communication side a problem.

Kaj still gets Physio daily from us and once a month from the physiotherapist, but once he turns 3 he will be attending a special nursery. He will then receive all these things in the nursery which will revert my role from carer to mom for the first time in 3 years.

Kaj has to be the happiest baby I have ever seen, and his easy going nature makes him a great favourite with visitors. The specialists and doctors still can not tell me if he will ever walk or talk, but we continue to work with him to improve his mobility. We are also learning basic sign language so that Kaj may be able to communicate in a different way until he can voice his own words.

12th August 2003
Kaj is walking, though not very much and though he needs supports and splints, he is now able to walk for short distances. HE does fall down and hurts himself easily but he is very stubborn and does not want you to help him. He is also mimicing what he hears but is still not able to ask for food & drink nor talk to you. He is still a very happy chappy though and is the love and sunshine of my life.

June 21st 2005

Apologies for the lack of updates, ok here goes.  Kaj has suffered greatly from a bowel problem which was inadvertantly caused by the community nurses.  Because of this, Kaj virtually stopped eating, had to go into hospital and have an op on his bowles to assist him and has resulted in him loosing his appetite completely and having to be on medication on a constant basis.  At 5 years old and 8 months, (if you are counting) Kaj is still in nappies, he is unable to control himself because of the medication and despite constant trials to get Kaj to be "self sufficient" when it comes to toileting, this has not worked until now.  I cant pretend that life is easy, I live in a very rural place, and dont get a huge chance to see "Normal" children very often.  So for the most part Kaj is Kaj and thats it.  We do things at Kaj's pace, and encourage him to learn and develop but when on the few occasions we see children that are his age thats when it hits me to how "abnormal" a life we lead.  Kaj has developed remarkably, he is walking,  though balance and danger awareness are definately something that needs extra work. He is able to get about.  Kaj has also been given a wheel-chair, the thing that I dreaded and fought against for so long, yet after some time struggeling I realised that my pride was standing in the way of making Kajs life a lot easier.  The wheel-chair is not used a great deal, but mainly where there will be a lot of walking or where the ground is too uneven for Kaj to be able to manage.  He is attending a special school and I have to say although it is very daunting to me, even now after Kaj having attended since he was just over 2 years old, it is a magical and special place.  They have a hydrotherapy pool as well as a multi sensory room..  Speach and language therapists, physiotherapists, Nurses and a specialist all at hand.  Each child is catered for individually and this is helping Kaj develop his social skills.  There are children at the school who are less disabled that Kaj and there are others that are far more disabled too.  It makes for a very humbling experience to sit in on sessions with children who smile, laugh, or run around, eyes shining with a bright light of genuine love, curiosity and a genuine interest in helping themselves.  Each time I walk through the doors, I try to convinve myself that this time I wont feel the tugging at my heart, for the disabilities of these children, but it tugs.  I have learned to understand myself through this, and I dont feel any pity for these children, I feel pride, for each and every one of these kids, they are doing it and for themselves (with a little bit of help from an amazing team of dedicated and loving staff)

Kaj loves to sing, and is a total whizz on the computer, in fact, he has shown me a few new things recently, and this amazes a lot of people, he does not communicate very well with you, but tends to communicate at you.  He can see an advert on TV and will repeat it to you word for word, with web address and telephone number, but will not say or indicate when he is dirty etc.  Kaj is truly amazing and each day that passes I watch in awe as he develops a bit more, smiles a bit wider, enjoys life even more,  he truly is special and I most definately have been blessed.

Kaj's father and I have had some ups and downs in the last couple of years, and we have now parted.  Kaj and his situation has not caused the split but as with any pressures etc that ricochet around anyones life it forms part of several reasons as to why relationships fail.  Kaj is not able to understand as yet what has been happening but he faces each day with his usual cheecky smile and that makes everything ok. We remained living together and started to build the gaps and bridges, when suddenly on the 5th October Norman collapsed at work and died instatly from a massive heart attack.

December 2011/January 2012

 Its very difficult to look at life and remain positive in all aspects, but safe to say I am very proud of Kaj and his achievements. His comparison against a "normal" 12 year old is immeasurable.  He has some quite complex communications issues, he remains doubly incontinent, he is generally quite weak physically and life can be extremely hard, but that said you would be extremely hard pushed to find a more polite and pleasant child.  Kaj is liked by so many people and in his own way he manages to communicate.  Life as a single parent can be tough, but I am aware of what he is mising out on, the things I cant do for him, the finances I can not provide, or indeed the future security, but I truly believe Kaj is not able to understand the loss of his father to the same extent, although he misses him.  It is very difficult for people without specail needs children to fully understand the miracle that happens every day.

Kaj and I would like to wish you all a very Happy New Year