While some mothers dread the day their children fly the nest and leave home, there are others who know that life for them, and their , will not be quite so straightforward. Similarly , where for most families, Christmas is a time for coming together, socialising, and breaking the daily routine, there are families where any change in routine can bring about problems.
Christmas and children with autism
Machita has twin sons, both with aspergers syndrome who are just turning 18. For their family, Christmas has always meant sticking to a normal daily routine, and avoiding surprises. No surprises from Santa under the tree when the boys were growing up, but gifts they had been shown and knew were wrapped and waiting with their names on under the tree. Family Christmases are still special, but managed in a different way to that of most other families. Other members of the extended family needed to be educated, so that they could understand why the needs of the children had to be met in a certain way. Machita has been lucky to have an extremely supportive husband- working together to create as calm and nurturing an environment as possible has been essential.
Coping as the children turn 18
But what does the future hold for Machita and her sons? At the moment they are living through a period of incredible uncertainty. At 17 the boys are supposed to go through a ‘transition’ plan. What Machita has quickly realised is that it is far more of a discharge plan! All the programmes and services she has fought so hard to gain for her children when classified as minors, now come to an end. Adult services appear to be non-existent. They still need support, but appear to fall through the cracks of the system. Although they will be under the care of their GP, their role is to manage and monitor- it will be Machita who will have to navigate social services.
Will they leave home. Will they find jobs? Machita appreciates that her sons life chances are reduced as a result of having Aspergers. They will need ongoing support, but are capable of becoming extremely loyal employees, if they are in the right job, and if they have an understanding employer. Machita appreciates that with youth unemployment reaching unprecedented heights, this will be even more difficult to achieve. Her one son, however, was just about to be interviewed for a building apprenticeship- something he wants to do .
For Machita being a parent has involved many sacrifices- with many more to come. Paid employment has been impossible due to the sheer volume of appointments she has had to attend with or on behalf of the boys. Her social life has been restricted. Setting up a youth club for the children with other parents of children with autism has meant that Machita and her husband are able to socialise with other parents while the children have a good time. Machita cannot envisage being able to travel with her husband ‘as a couple’ as they need to be on hand for their sons.
What advice would Machita offer other parents of children with autism?
Machita says to join a local support group- discussing and sharing information with other parents in similar situations is key. Gain as much information as possible. Be politely persistent with organisations and agencies involved in the care and support of your child. Believe in yourself and know what your child needs. Network with other parents- learn from them- understand what phrases and words have worked to gain attention and get the help you need- it all helps! Join the National Autistic Society for information and support.
Machita knows that her family will pull through- they always have- but they will face new challenges now her children are classed as ‘adults’.
Get together in festive season to and hold a Festivi Party to raise funds for the National Autistic Society
The National Autistic Society (NAS), the UK’s leading charity for people affected by autism, is asking friends, families and colleagues to get together during the festive season and raise money for charity by throwing a ‘FestiviTea Party’. Organising your very own bash couldn’t be easier and requires just three very simple ingredients: tea, cake and friends!
FestiviTea Parties are a chance to roll up your sleeves, don your aprons and bake up a storm with your nearest and dearest, whilst at the same time raising vital funds for the National Autistic Society. You can hold your party anywhere and at anytime. Whether it’s at home, work or out in the local community, you can make your FestiviTea Party as elaborate or as laid back as you like. How you choose to raise the money is also up to you – ask guests to buy tickets, make a donation, or pay for the cakes and biscuits you bake!
Christmas can be a stressful time for many families, but it can be extremely difficult for the half a million people affected by autism, who can often become confused and frightened by sudden changes of routine, unusual foods and new social activities. We need your help to continue to provide vital support and services for individuals and families affected by autism across the UK.