Hello ??, many jelibeans are summonsed to so many appointments that we forget to ask WHO YOU ARE? So instead of asking politely, many of us remain quiet - if we do ask, we forget as quickly! Most jelibeans feel overwhelmed and intimidated when we have to consult professionals, please take that into consideration as well. This is not a comfortable situation for us.
Many parents consulting Jelibean have no clue of who they have seen or why they have seen that person. And even if we know your name and position we are not sure of what you do, how long you have trained or what your specialist area of expertise is. Many of us are not sure what to expect when we meet you. Will you be performing tests? Many jelibeans don't like surprises - the sight of a needle will send us into meltdown. Maybe you will be talking to us for an hour? But we don't know that.
Please can you take time to explain in a kind gentle way, then we can prepare ourselves and our children. We don't do change well either so please give plenty of notice if you need to change our appointment at short notice.
Some professionals regularly do home visits. Social workers, Health Visitors, Outreach workers and others. For jelibean families this can be quite stressful. Many jelibean families/children do not respond well to authority and they are not sure how to behave in situations like this. Please remember that it takes a jelibean to make a jelibaby. The likelihood is that although undiagnosed the adult you are talking to could be on the autism spectrum. Some parents find communicating with professionals similar to tying your tongue up in knots and spraying it with chilli sauce - nothing we say seems right, we stumble getting our words out, fall over trying to get you a cup of tea. In our panic we come over as 'inappropriate'. What a surprise! Many of us are close to meltdown by the time you knock at the door from pure worry.
Living with a child on or suspected of being on the Autism Spectrum is challenging often in itself! But hey what do we as parents know? Sometimes (actually quite often) parents complain that they are simply not being listened to. Worse still they feel 'blamed'. One of our jelimums here in Cornwall says she has enough 'parenting certificates' to redecorate her living room! And has it made any difference? No was the answer I got.
So why are the parents often 'blamed' or accused of 'flagging up unecessary issues'?
As a parent of a jelibean and a jelibean myself, I would like to inform you all, in a kindly manner, that my memory is not all that it could be! As well as not being able to remember what you have said during a consultation, sometimes I forget I have even seen you! Often the whirr of appointments mean I am not even sure who you are or what you do. Could you please explain to us why we are sitting in front of you and what you can do to help?
I and many others have difficulty processing information and editing for meaning. This could mean that we walk out of your appointment with a completely different perception from the one you think we have.
Note taking for us is tricky. You see..... we cannot listen to you AND understand what you are telling us AND remember to write it down correctly AND in order all at once. There are a lot of AND'S there and we can't do those! We can either listen or take notes but not both. Please be kind enough to send us a letter or a report of our meeting together. It helps for us to have it on paper. Please keep copies as some of our filing systems are a little rusty. For some of us even writing one sentence is a challenge so we really would appreciate it if you could arrange for someone to do this for us.
Many of us would like further clarification on what you are saying. Some of the terms used may as well be a foreign language. What does it all mean? Could you write to us in simple English please?
From a frustrated jelibean :)
And more appointments – that is the trouble for most jelibean families. We call it ‘wicker basket syndrome’. Passed around and around until we are dizzy, fed up, frustrated and confused.
For most families who suspect a member of their family, child or perhaps themselves as being on the autism spectrum, the first appointment is just the start of a seemingly never ending chain of people to see, places to go and the same old story recounted over and over again….it’s tedious and very stressful. Just remembering when all the appointments are and arriving on the right day with the right child is a mission. Congratulate us when we arrive on time, don’t please keep us waiting!