Lloyd’s story
It’s always good to hear directly of the experiences of other parents and of their children’s progress. We are all faced with similar issues in having an autistic child, and have much we can learn from each other, from every fight, despair, victory and struggle. I thought it was time to update you on our personal circumstances, because a number of important developments have taken place, ones which might be helpful for you to know about for the future.
Our children are growing up and becoming adults, even if we can’t quite believe it. In our eyes they remain so vulnerable and child-like. Even those considered to be high functioning, who have been diagnosed as having Asperger’s Syndrome, are potentially at risk of having insufficient support, inadequate emotional protection and restricted opportunities. And there are many potentially significant risks for those who don’t receive adequate support. The stories abound. So, how can we best help our children manage this transition to adulthood?
As parents, we are advised that every transition for children is difficult. We heard this for the first time when our children left nursery to begin primary school. Can you remember how scary that was? And then, when they started secondary school, wasn’t it even scarier still, as the complexity of their social world and their need for independence, better judgment and self-help skills increased? The transition I have recently faced, as my son reached 16, was for him to be legally categorised as an adult. There are, of course, still further major transitions to come, with the one we all fear the most being the one that we will not be able to witness. I don’t intend to make this piece depressing: I would like it to be constructive, because, in fact, we can change our children’s lives for the better. I think we are lucky to live in the UK, where there are some support mechanisms available, even if it can require considerable effort to access them.
Lloyd’s transition to adulthood was initiated by our school head teacher and I am most grateful to her for pointing us in the right direction. We were referred to the social service transition team which provided an assessment of our needs, both my son’s and our family’s. This assessment resulted in some funding being made available. I could have used this funding to request a placement for Lloyd somewhere, but I didn’t consider this to be a suitable option, at least for the moment, mainly because he is too unwell physically. Lloyd has Lyme Disease, which was only diagnosed recently and has therefore only started to be addressed with the support of the ATT. The consequences of him having untreated Lyme Disease, almost certainly contracted at a very early age, have been devastating. We have witnessed a worsening of his epilepsy, chronic fatigue, motor, social and communication skills, without being able to significantly halt the regression until treatment began. I will update you on this at some stage in a separate communication, but for those who are interested, you can follow our story here.
The funding package provided by the social work department covers 30 hours a week of 1:1 support from a team of carers employed by Autism Initiatives. This is a UK-wide charity with an excellent track record for the provision of support services to the over 16s. The staff are knowledgeable about autism and epilepsy, and are dynamic, enthusiastic and young. They are open to learning, to differences in individuals, and are non- judgemental. Just what we need. The funding also covers an extra 20 hours a week of support (coming from respite care and care at home funding pockets). We have put this towards employing our own ABA tutors with the help of an organisation called the Lothian Centre for Inclusive Living (LCiL). This organisation provides assistance with payroll with me effectively being an employer. Our tutors are therefore classified as staff who pay income tax, (which they can reclaim, depending on their financial situation.) There is cover for holidays and sick leave, which I think in general is better for them. This package is available for 48 weeks of the year. LCiL also provides guidance in drawing up a work contract which covers insurance, time sheets and other employment aspects, for every staff member. The funding is made available by Direct Payment. I have a bank account into which the money is paid in instalments throughout the year. I also have a card for this account which I can use to pay all agreed providers and staff on a monthly basis.
On a separate issue, I also sought legal support to become my son’s welfare and financial guardian. This was granted by the courts when he turned 16. I received some support from Legal Aid for this process, which was conducted by a firm of solicitors who routinely deal with such applications.
The great advantage of these new developments is that we now have the flexibility to provide what Lloyd needs. We are able to cover all relevant areas: health, education (academic), self-help, independence, communication, leisure, physical etc, each at an appropriate level. Our entire programme continues to be supervised by 2 ABA consultants, one local lead therapist who shadows and trains staff as required and one who supervises the programme every 2 months, and who has an excellent knowledge of anything we might encounter or need. In total we have 10 staff in our team.
The majority of our curriculum is iPad-based. We use it to record data, activities, progress, any problems, and to communicate with the entire team (e-mails of notes, performance, a log of activities, a diary, videos etc). The iPad also contains all the information required for various teaching procedures, care plans, epilepsy management, information about my son, emergency contacts, safety procedures. As far as Lloyd is concerned, he can use it for entertainment (music, videos, internet, fun activities), to assist him in planning activities (photos, schedule of activities, prompts, visual cues, social stories), and for learning. The iPad is suitable for any type of learning. I should say that using an iPad doesn’t mean that we have become impersonal, using it as a substitute for interaction with people. However, it is so effective in teaching the pre-requisite skills for socialising, so visual and motivating, and it requires only minimal motor skills. I therefore really believe that this tool is essential to our programme, and will become increasingly used by others with disabilities, especially autism. I have to remember to back up the iPad regularly though!
On the financial side, we have of course received additional support from the government, through the disability living allowance (DLA). Through the motability scheme, we have access to a car which every staff member is insured to use. This allows Lloyd to go to the gym, to climb, to swim, to use a sauna, as well as to attend other social groups. The reality is that he isn’t stuck at home. If he’s unwell, of course, he can stay at home to sleep and recover. This is a new luxury. I use the word ‘luxury’, but really this is nothing more than every family like us deserves to have. If we’d had this support earlier, I believe we would have been less affected by Lloyd’s developmental issues than we currently are.
I am often asked, what next? My answer to this is that right now I can only deal with the present. For the first time, we have the opportunity to give Lloyd a fully supported, flexible, stimulating and effective structure, for 50 hours a week. This will allow us the opportunity to address his health issues which we have the means and knowledge to do. Where this will lead him in five years’ time, I don’t know. But I do hope it will be a place where he won’t be prone to seizures, where he will be safe and supported in his choices and his emotional needs, and included in a supportive community. Access to all life-long learning is a right we should all request for our children.
Perhaps things will get easier as we continue to progress. It looks that way at the moment. So, fingers crossed!
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