Just a few years ago the attitude in the UK, and in many countries we visited, was that if your child was over five years of age that there was no point in providing him or her with intervention and that 'support to cope' was all that was available. Here at NETwork we have never believed this to be the case. We have been privileged to work with parents, grandparents and siblings who haven't given up and have striven for more for their loved one. We have witnessed some incredible accomplishments, and I would love to take this opportunity to share a few with you.
Some of our families have never received a diagnosis for their loved one. Many mums and dads ask me whether or not they should pursue a diagnosis. What I recommend depends entirely on the individual and the family, but I would always look to these questions:
- will a diagnosis help you or your child to gain funding or services which you actually want for him or her and will actually help him or her to make gains
- will a label help your family to better support your child, or will it decrease their expectations for your child?
- does a diagnosis help your child to have doors opened to him or her, or will it place barriers and obstacles in their way?
- does a diagnosis better help you to identify your child's exact areas of struggle so as he or she can be taught skills to overcome them?
- will the journey to a diagnosis spend the time and finance you have available which could be better spent intervening?
These are just a few questions which have helped our own family and other families along in their journey.
Now for a few examples of success for our older learners!
We met a mum in Australia who had an 8 year old boy with significant impairments arising from a diagnosis of autism. He could not talk, had three PECS, was not allowed to go to mainstream school and had been in four private schools already. The young boy had constant self stimulatory behaviour and ran away from home at least twice a week. His family were advised to put him in to a residential unit, which they did not want to do. Within a few weeks we were able to teach this little boy many words. We have been working with him for four years now, initially pretty intensively and now once a month through a skype call and once a year for a three day consultation. He can answer many many questions, asks many questions, can ask for all of his motivations, never runs away, has been in his mainstream independent school for three years now, is a very keen surfer and drummer and has two very firm friends. These are just a few of his achievements!
In October 2010 a sister requested I go to see her brother just to see if anything could be done to help him. He was 47 at the time, had no words, signs or PECS and didn't communicate. He had small outbursts but, most of the time simply sat in his room rocking and playing with string. During our first consultation he was taught the word for 'drink', 'biscuit' mad 'toilet'. Within six months he had ten games he liked to play and 50 words. We may not have been able to support him to become fully conversational, but this man and his sister were able to achieve so very much.
At the beginning of this year a mum called us as a last resort as she felt she could not carry on with her son and didn't know what to do. He had been asked to leave three schools, three psychologists and peadeatricians could not give him a diagnosis of anything and he was now being home educated but not learning anything. Life for his parents was extremely tough and life for this little boy was very sad. Just three months later the little boy attends four extra curricular groups, has play dates at least twice a week and is learning avidly with his mum. He has not received an official diagnosis, but with the assessment of the VB MAPP as a framework we were able to help his parents clearly identify learning struggles and overcome many. There are lots of skills to overcome, but he will certainly overcome most if not all of them in time. The little boy most likely has non verbal learning disorder, but his parents have decided that a label is not the best course of action for their family at this moment in time.
Lots of different stories with lots of different results, but the same message: it is never too late to learn!