KEEP CALM AND CARRY ON
SO, AFTER A DIAGNOSIS of autism, how do you pick up the pieces and carry on with your life? Can you carry on with your life as before? Unfortunately not. Becoming a parent alters your life enormously from the day your first child is born. If your child is then given a diagnosis of autism, your life and the lives of those around you are changed again.
Acceptance
One of the hardest aspects of dealing with your child being given a diagnosis of autism is acceptance, both of your child’s condition and perhaps of your child, also. You will have loved your child from birth, or from when they first came to you, and you will not have had any idea of what was to come. Although the diagnosis will probably be a huge shock to you, the hidden blessing will be that you already know and love your child for who he or she is. You will have already had precious time to bond and so you will be more prepared to take on whatever life throws at you and your child.
So, although autism is absolutely not what you were hoping and expecting for your child’s future, by the time you realize that your child has a disability, you will already love them unconditionally. Would it help if you knew their possible diagnosis pre-birth? Perhaps. And perhaps in the future it will be possible to predict those babies who may potentially go on to develop autism. There is already early research showing there may be some chemical changes during pregnancy to indicate possible autism, but as there is still no definitive medical test to diagnose actual autism, this is not currently of any real help. Being forewarned might mean that your child was given the earliest possible help and that you could start any treatment or therapy at a very early age. It is well known that the younger the age the child is when you start intervention, the better the outcome for that child. You might also not have to fight for everything your child needs if you had a diagnosis at birth.
A friend with a child born with Down’s syndrome said it was a huge shock when her daughter was born with Down’s syndrome as she had no warning at all. A little later on, though, she did say that, unlike autism, because her child had a known disability she was given help and support from birth. The authorities can’t argue with a proven condition.
Does autism exist from birth? Research is still at an early stage to try to define what autism actually is, and whether it is genetic and inevitable, or whether it is genetic but triggered by one of a number of factors. Or indeed, is it genetic at all? There are too many potential ideas about this to try to form an opinion at the moment. If autism is a medical condition, then are our children pre-disposed to developing autism or do they already have the condition before they are born? If they are pre-disposed to it, then is there anything we can do to prevent it from happening? Does that mean that autism is a time bomb waiting in the wings and, if so, what is the trigger? Are there many different triggers? Along with parents of children with many other medical conditions such as diabetes there are many unanswered questions. Although diabetes is a very different example, it also seems to suddenly develop in children with no other history and research is currently underway to try and find the cause or trigger in these children.
So, if you had the knowledge before your baby was even born that they might already have or develop autism in the future would that help or hinder your relationship with your baby? We know that a very high proportion of parents with babies diagnosed with Down’s syndrome in the first trimester choose to terminate their pregnancies as those parents feel they will be unable to cope with a disabled child. Would the parents of a potentially autistic child feel the same way? Or would society pressure them to feel this way? If there was more acceptance and support in society for children with disabilities, would this change the way that people feel about having a child with a disability? There is no measure or scoring system to predict the potential severity of autism in any child, so would a prenatal diagnosis help? It might give you time to come to terms with a possible diagnosis, but as the diagnosis would be so vague and uncertain this could potentially be more frightening than the reality turns out to be. There is no way of predicting how severe a child’s autism may turn out to be.
I was grateful not to have a diagnosis for my fourth son for the first two years of his life. I wanted to just enjoy him for who he was and stay in my bubble of hope that he would be fine. Although the risk of him also being autistic like his older three brothers was very high, I didn’t want to dwell on this and spend every moment thinking about it and watching for signs. I am sure other people did, the most hurtful being children at his older brothers’ primary school who met him at only a few days old and asked me if he was autistic, too. At the time of his birth, he wasn’t autistic to my knowledge and I was determined to keep that thought at bay for a while.
Moving Forwards Post-Diagnosis
Once you do have a diagnosis you need to try to get on with your life now knowing that you have a disabled child and all the responsibility this will entail for the rest of your life and theirs. All of your children will always be a defining part of your life. Children without disabilities grow up and lead independent lives of their own in which you may still play a large part but you usually no longer have responsibility for them. Children with disabilities will remain your responsibility forever, and this realization can feel overwhelming at the beginning.
That feeling of being overwhelmed will come and go and change as time goes on and your children grow up, but it will become something you live with. Even if you make a decision for your child at some stage to move into residential care, although you may no longer have the day-to-day responsibility for your child, you will still have overall responsibility as a parent and will need to make important decisions about your child’s future. Autism parents are often known as ‘warrior Mums or Dads’ who will fight the world for their child. Of course, most parents will fight for what they believe is right for their children, but parents of a child with autism will have to fight harder for a condition that is still not totally understood or, more importantly, fully supported by society.
Family Life and Siblings
How do you juggle your family life with other children you may have? How will your child with autism affect their lives? Again, some of this will depend on the severity of your child’s autism and how they develop as they grow up. How do you try to do the best you can for all your children? Any child with a disability will command much of your attention and time because of their issues and needs. You may find it is a full-time job caring for one child with autism, let alone having other siblings to look after at the same time.
Sometimes, as in the case of my family, you may have more than one child with autism to look after, and that will put an even bigger strain on your capacity to cope and do the best you can for each child.
It is unfair on another child to expect them unconditionally to take on any of the care for a sibling with a disability, but most of them do, without question or judgement. They will often love and care for their sibling in the way that you do. Perhaps a child who is without the preconceived ideas and prejudice about disability that most adults have is in a better position of acceptance than most adults are. Children are very accepting of others, which you will also find later on when your child starts nursery or school. It is usually their parents who instil fear or prejudice in them. The difficult part is being able to separate your individual children’s lives and endeavouring not to let a sibling’s disability impact in a negative way on the lives of your other children.
Growing up with a sibling with a disability can be enriching for a sibling. They will learn tolerance and acceptance of others from a very early age and the experience will probably help them to develop into caring and thoughtful individuals. But as children they too are entitled to as normal a life as possible and to achieve as much in their lives as they can. This will probably mean that you will need some extra help. Otherwise, your time and energy will be severely stretched trying to do your best for everyone.
Juggling Finances
How do you juggle finances to ensure that it is fair on all your children? Having a child with autism can be very expensive in terms of having to provide all the therapies that will enhance their development but which unfortunately may often need to be paid for by you because of a lack of funding in the health or education or social services departments. In an ideal world, any resources or therapy needed would be provided by the social and educational systems, but funds are limited and so parents often end up paying for vital services themselves. How do you manage to provide everything you wish your special needs child to have at the same time as providing everything you feel your other children should also have? This is where you need all the financial help that you can get for your child with autism in order to make sure that they get the most you can provide for them.
You do not want to cause resentment among your children by providing more time and more resources for your special needs child than for their siblings. In any family, it is hard to treat all your children fairly and equally, but what if you had a gifted child or one who excelled at sport? Families of future Olympians must have sacrificed and put one child’s needs above the others due to exceptional circumstances. Your child with autism is exceptional, too, and needs as much time and energy as you can provide. You may have to share some of the care of your children among relatives and friends and accept that you cannot do it all yourself.
Your own children may happily and willingly want to help care for their sibling with special needs. If they want to be involved, then that is wonderful for you and your family. If they do not, then it would be unfair to expect them.
Although there is a nine-year age gap between my oldest and my youngest son, there is a very special bond. My oldest is also autistic so perhaps he understands his little brother better because of this, but he has loved him unconditionally since the day he was born. He takes baths with him, plays with him and looks after him as best he can. My other sons accept their little brother as a slightly annoying little person who wrecks their Lego models, and I would not expect them to help look after him.
If you can, try to keep your other children from having to share a bedroom with a sibling with autism. A child with autism may have problems getting to sleep, staying asleep, gaining continence skills as well as other issues. Your other children need a proper night’s sleep, so if sleep is an issue you will need to keep them separate. Your ASD child may pull things out of cupboards and generally make a mess of their rooms. It is unfair on a sibling to have to cope with this and a sibling will probably need space of their own to retreat to for peace and quiet from time to time.
I have locks on the outsides of my other boys’ bedroom doors so that we can lock their rooms to prevent the littlest one getting in and trashing all their stuff while they are at school. If they come home and find their rooms and things in a mess or broken, how can I expect them to be pleased to see their little brother?
Siblings of Special Needs Children
As your children get older, you may find that there are activities for siblings of children with special needs where they can meet other children in a similar position. There may be support groups and counselling available, if you think they need it. It may be helpful for children to meet other children who may also have assumed the role of a carer. If your child with autism is quite passive and does not greatly alter your normal family life, you may find that your other children accept their sibling’s differences with few problems. But it is more likely that your child will not be passive, and will create noise and chaos so your other children will need to learn how to handle this. They may become very protective of their sibling with special needs. It is usually adults who have issues around the acceptance of differences and not children. If your children grow up with a brother or sister with special needs, they are more likely to grow up without prejudice or any preconceived ideas of how life should be lived. Your other children will learn a life-enhancing lesson and will hopefully spread the message to others around them.
We have a fabulous part-time babysitter who has two younger brothers on the autistic spectrum. She has grown up with autism and now chooses to work with our boys because of this. She could work in any other field or babysit for children without special needs, but she really enjoys being with our boys. She is proof that living with autism can be so rewarding that you choose more of it.
You should not be defined by being the parent of a special needs child, although it is often the case. In the same way, your other children should not be defined by being part of a special needs family. Hopefully, your other children will benefit as much from your special needs child as he or she will benefit from having siblings who love and accept them for who they are. Other children make great role models (when their behaviour is good!), so you will have teachers on hand without them knowing it! An adult can get on the floor and pretend to play with trains, but it is so much better for a child to learn naturally from another child who is genuinely playing. Imitation is a key skill to acquire in order to learn other skills in the future and once a child has learned to imitate, you can teach them so much more. After all, speech is learned by listening and copying, so imitation is a fundamental skill.
There might be more difficult scenarios, though, if you have a child who has severe temper tantrums or can be aggressive towards other children. Sadly, because of their own problems, some children with autism can become very frustrated and may physically hurt other adults or children. Sometimes it may be their only real method of communication. You will need to ensure that your other children are not subjected to any violence. Rough play, even physical fighting is normal amongst siblings, but even then they generally do not cause much harm or any real injury. This may mean that you cannot leave your ASD child in a room with other children without a responsible adult being present.
I had a situation for the first two years of my youngest child’s life where he could not be left in the same room as one of my other older boys. He didn’t mean to harm anyone intentionally, but he had no idea that a baby was not a toy and could have seriously injured him if they were left together in the same room. This meant I had to take my youngest son with me wherever I went in the house to guarantee his safety.
Adapting Family Life
Trying to have a normal family life can be very trying indeed! If your child with autism needs to watch a film at a special needs screening, does that mean you expect your other children to attend the same screening? Will the noise and possible disruptions spoil their enjoyment of an outing? But do you have the time and energy and resources to take them to separate cinema screenings? Will your other children mature at different rates, meaning that a younger sibling may outgrow an activity before their older, affected brother or sister? It can be hard with age differences trying to accommodate everyone in a family, but if you add special needs and different ages of maturity to the equation, the task can become harder still to juggle.
Sometimes there are small advantages in having a brother or sister with special needs. For example, at a theme park like Legoland, children with autism are given special exit permits so they do not have to queue for each ride. You are allowed a small number of guests to accompany them each time, so your other children or friends can also skip the queues. When going on holiday, you should be allowed to jump queues at the check-in desk at airports and, hopefully, choose where you sit on the plane.
However, you may come across resentment from other parents who have been standing in a queue and who demand to know why they have to wait in a line and you don’t. I was saddened by one very irate family who were complaining about the entry fee they had paid and how unfair it was after having paid all that money that they still had to queue when we didn’t. I would happily have paid their entry fee a thousand times over to have a ‘normal’ family like they had. You may be able to sell the positives to your own children, but in reality we would love to be able to queue like everyone else if it meant our children were also like everyone else’s, i.e. without the addition of the negative parts of autism in their lives.
Giving Up Work
You may have to adapt family life in many ways. In the early years, you may have to put a great deal of your life as you know it on hold. You may decide you have to give up work as you may find it almost impossible to work and to look after a special needs child. Your child may need watching and taking care of every minute of every day. Of course, all children need care and attention, but most children are able to entertain themselves for short periods of time, and certainly after a few years, children begin to understand rules about what they can and cannot do. Your child with autism may not be able to behave in an age-appropriate way or have any idea at all about safety or rules. You may find that they need someone with them constantly and you may not have time to do simple household tasks, let alone contemplate working in any official capacity. Even if you find a nanny or carer who is able to look after your child while you work, you may still find that you do not have the energy to work as your child may have disturbed sleep patterns, which means you in turn will have disturbed nights.
Additional Workload in Having a Child with Special Needs
You will also have extra administration, paperwork and appointments to take your child to, and these can take up a great deal of your time. You cannot expect a nanny or carer to take your child to important appointments and assessments where the professionals will expect at least one parent to be present. You may have a very understanding workplace or are self-employed, but the additional expectations on a special needs parent are great and you may end up being torn in two trying to meet everyone’s needs. You will also need to have 100 per cent reliable childcare, or you will end up taking days off work every time your carer takes a day off.
At this point, I should emphasize not being able to work means giving up ‘paid work’ as looking after a special needs child is more than a full-time job! Some mornings you may find yourself longing to go off to a paid job just to give yourself a break!
Loss of Finances
Another downside of not working for money may mean financially juggling with the loss of a salary. With that may also come a loss of financial independence for whichever parent decides to give up work. You also need to consider that not only are you potentially giving up one salary, but that you will spend more on bringing up your child than you would do on a child without a disability so it can be a double blow that you have to give up earning money at a time when you could actually do with more. So you may go from a partnership where both of you work to one where one partner works and the other is at home, essentially doing an extreme form of childcare. With pre-school-age children, it is normal to have to either pay for childcare or to look after your children yourself in an unpaid role as their mother or father. When your children are at school age and you are still in the position of needing full-time childcare, the financial implications can be huge.
My twins as teenagers still need looking after every hour of every day, which means carers or babysitters are needed for them if I am not free. One irony of them needing babysitters is that other teenagers of the same age are themselves starting to earn pocket money babysitting for younger children. So, not only have we missed out on a stage where we don’t need to pay babysitters anymore, but our children have also fallen behind yet another stage and remain fully dependent on us.
Maintaining Your Identity
Along with the financial loss of a salary or your previous way of life, you also need to consider your own identity and what you may be able to do to try to preserve it. In reality, this is very, very hard. People may wrongly presume that you are sitting around at home all day drinking coffee. When someone asks ‘What do you do?’ and you no longer have a job to be defined by, you will have to reply that you are at home as a full-time carer. Often, trying to explain what that actually entails to someone who does not have a special needs child is not always easy. More thoughtful people may think to enquire what you may have done in your ‘past life’, i.e. the one before you had children, and perhaps respect you for having made the decision to stay at home to care for your child. Again, having a special needs child is a great social leveller: we are all carers and cleaners once we no longer ‘work’. Sometimes, though, you may find yourself wanting to say that you are not just a carer and that you used to be someone with a totally different label. Perhaps retired people also suffer from the same loss of identity when they have to give their working situation as being ‘retired’ rather than using the working title by which they were probably known for years. Society seems to have diminished the role of stay-at-home Mums and Dads in an era where everyone is expected to have some form of career.
Considering Your Own Needs
As a mother or father, considering your own needs above your child’s is something that many find quite hard to do. It is instinctive to put our children first. Unfortunately, many, many parents of children with disabilities become burned out from the stress caused by the physical and mental caring for their child. So, if you feel guilty considering yourself, remember: if you crash, your child will have no one to care for them. So never feel guilty.
But how can you justify spending money or time on yourself when your money is often desperately needed for other things? How do you weigh up the cost of an hour of therapy for yourself when you could be spending that money on an hour of therapy for your child? The long-term effect of your child having as much therapy as you can afford may mean in the future that your life will be made easier. They may need less care ultimately because of all the therapy you have paid for. The short- and long-term effects of depriving yourself of any necessary therapy could, however, mean that you become stressed and ill and unable to care for your child, and this can become a vicious cycle. If no one else is kind enough to make sure you have time for yourself and your needs, then you will have to learn to be kind to yourself.
Many of us parents have learned this the hard way after years of not caring for or looking after ourselves. I wish I had had a mother who might have been there to look after me a little at times and prevent the damage I have inadvertently done to myself after so many years of full-time caring. It is not selfish to consider yourself and to give yourself a break, but it often feels self-indulgent and so we don’t do it often enough.
You may need some counselling or therapy to come to terms with your child’s diagnosis. Some people never actually get to a point of real acceptance. Perhaps that can be a positive as it means you will keep fighting to try to change and enhance your child’s life and future. However, if you cannot live with the fact that your child has a lifelong disorder and are continually distressed and depressed about it, your life will be so much harder than it could be. We do not need to be ‘Pollyanna’-like and joyful about autism, but we do need to get ourselves into a place where we can get through each day and appreciate the positives in our lives, including our much-loved children.
If one parent is more accepting than the other of their child’s disability, this can be very difficult for a relationship. Grandparents, too, may not be accepting and may come out with platitudes saying that your child ‘will grow out of it’. If they come from a previous generation where the word ‘autism’ was not widely used or known about, it can be hard for them to understand that it is a real condition that will not just go away. There is so much you can do once you are able to confront your child’s diagnosis, believe it, accept it as far as you are able, and then move on into loving and caring for your child. It is very hard to be positive for your child if you remain in a state of disbelief and so you should seek help at an early stage if you feel permanently down all the time. It is not weakness to accept that you need help, nor is it a rejection of your child if you feel overwhelmed by caring for them.
Coping with the Stress
If you are able to come to terms with the diagnosis, but feel stressed by the whole situation, you may want to try complementary forms of stress relief like massage or reflexology. Most of all you will need time off away from your child to be able to function alone as yourself and be seen not just as a special needs parent.
So what can you do for yourself to keep calm and be able to carry on? It is very important to remember that you as a parent are usually the anchor that keeps everything together. You will be responsible for many peoples’ lives as well as your own. Yes, this would be true of any parent, but is especially true of a parent in your situation. A parent of a child with special needs has such additional responsibility and a great deal more looking after to do in order to keep the family functioning (or, indeed, flourishing). Unfortunately, you will encounter many people who just do not see, or do not wish to see, the difference having a child with special needs makes to your life. Ignore those people observing and not understanding how much additional effort you are having to make. Your child may look to outward appearances exactly like other children with no issues. There may be no obvious physical features or differences so you may find little support from some people.
If people do not understand the strain you may be under and the physical demands that are being made upon you, then they will probably not consider the fact that you might need a break or support from them. After all, they too may have children and their attitude may be that childcare is tiring, but we all do it, so why do you need extra help? The luckiest families have supportive grandparents/parents/siblings or wider extended family willing and able to step in and offer support. For those to whom this applies, hopefully this unconditional support will be enough to sustain you. Having good family support can mean so much. It may come in the form of additional childcare for your child with autism, or childcare for your other children. Even more importantly, sometimes, it will mean emotional support for you. Having someone willing to listen, to understand, not to judge and to support you is priceless. You cannot buy or pay for love and support that is unconditional and available when you most need it. Some people will have families who offer both practical and emotional support and, hopefully, will not need to seek out support elsewhere. If you do not have a supportive family (sadly, all too common), then you will have to find the time and energy to seek out that help and support. Of course, the whole point is that you do not have the time and energy, so how are you going to get the support you need, both physically and emotionally?
Emotional Support
If you are older parents, your own parents may be unable to help. Indeed, inevitably they will be older, and they may even be at a stage of needing your help and support. Not only will you not get any support from them, but you may also be expected to be there to support them. Your own family members such as your siblings may be too busy getting on with their own lives to support you in theirs. People are sometimes supportive in the early acute stages of a life-changing situation, such as a sudden illness, bereavement or change in circumstances. After a while, though, you may find that the support drops off and your problems become commonplace and part of the fabric of life to other people, but obviously not to you. So you may find a rush of support and help when your child is first diagnosed, but then this support and help fading away in time. Of course, with time your energy is increasingly depleted and while emotionally you may be dealing better with your child’s diagnosis, as time goes on, your physical energy will also decrease. You may also find the mental stress of looking after your child increasingly tiring as you continually fight for what your child needs and deserves. So just when people start to think that you are no longer need their support, you may actually be needing it more …
Long-Term Tiredness
A mother with a newborn baby may complain of tiredness and of being woken during the night, but eventually this situation will improve and there will come a time when her baby begins to sleep through the night, and once more she will have enough sleep. This is a temporary circumstance, which is, of course, quite normal and your hormones and happiness at having a new baby will hopefully see most people through this stage. A parent with a child with autism who has a sleep disorder may never get consistent sleep for years on end. Sleep deprivation on a long-term permanent basis can have a profound effect on the parent looking after that child. These are the hidden effects that others do not observe because they do not live your life. It is well known that sleep deprivation can affect your health, your ability to make sound judgements and, of course, your mental state. If you have a child who regularly wakes during the night, then you need practical support in the form of a night off from time to time, or respite care in the form perhaps of an overnight carer to stay with your child so that you can get a proper night’s sleep. Even with some respite, the long-term strain of never having enough sleep can have serious consequences on health.
Even if you are at home full time and not working in any official category, you will still need some help with childcare in order to be able to make all the phone calls, write reports, attend appointments and all the other things that take up so much of your time. Managing all the paperwork and filling in forms can be very time-consuming on top of looking after a child you cannot leave alone on their own for a minute.
I have a filing cabinet full of paperwork, ordered in categorized sections for medical reports, biomedical results and reports, speech and language and other therapies, all the paperwork leading to statements of SEN, including all the legal documentation, annual reviews, social services and direct payments – and then all the ABA paperwork and files. In my case, I have this administration to the power of four as all four of my boys have autism. This is just the extra paperwork because of their autism and is on top of all the other paperwork usually needed for any child as regards to schooling, after-school clubs and hobbies. Some mothers have been known to carry paperwork around in a wheelie suitcase to meetings instead of a briefcase!
Family Holidays
Having a family holiday may be a wonderful idea in theory, but holidaying with a child with autism can be less of a holiday than staying at home might be. But everyone needs a break and you need to feel as much like a normal family as you can, so this means having holidays like everyone else. Whoever coined the phrase ‘A change is as good as a rest’ was certainly not a parent with a special needs child, as a change of routine may be good for many of us, but for a child with autism, change can be one of the hardest things to deal with.
A very few fortunate families will have sufficient income to be able to deal more easily with the problems of a family holiday entailing other children or, indeed, enabling the parents to have a break, too. If finances allow, you might be able to take along some additional one-to-one support specifically to look after your child with autism. The downside to this will mean having to budget for an additional wage, an extra bedroom or hotel room, probably an extra flight or train seat. Also, it will also mean that your family holiday will not just involve you and your children, but also a non-family member who will be with you for a lot of the time.
To avoid this, perhaps a grandparent or other supportive member of your extended family could accompany you, instead? This would at least mean that your family holiday is as close to being a ‘family’ holiday as you can manage. Many families go on holiday anyway with grandparents or cousins, so if you have supportive ones you are in the lucky minority and should be able to enjoy a proper family holiday, and even get a bit of a break yourself.
Another alternative is to book an organized family holiday with activities where some one-to-one childcare can be arranged at your destination. There are some family holiday companies that offer childcare clubs or specifically one-to-one childcare for special needs children at their ski or beach resorts. It is always worth approaching a company directly and enquiring if it can accommodate and look after your child. Of course, this means that your child will need to be able to adapt to a new environment and a carer unfamiliar to them while remaining happy and safe. If you do not think that your child can be looked after by someone they do not know, then you will have to take your own childcare with you. You may find that booking a private house or villa is a better option than a resort if your child has behaviours that are quite hard to manage and they might find the presence of too many strangers overwhelming. Safety can be an important consideration while on holiday. You may be able to leave your child in another room for short periods of time at home, for example, if they are playing happily or watching a film while you are cooking, but on holiday in an unknown and potentially dangerous environment, you may need to have someone with them for twenty-four hours a day. Your home may be childproof, but a holiday home or hotel room is probably not.
Travelling
You will most likely have to adapt where you go depending on your child’s needs. The practicalities of travel are the first things to consider. A child who gets up and runs off is not a good candidate for a train journey. There are no safety belts in trains, so you might find it impossible to keep your child in their seat. A long flight for some children with ASD will not be possible if they suffer from anxiety or are unable to sit still for any length of time.
We have never flown for more than a few hours with all our boys as keeping them all occupied and sitting down and as quiet as is possible is almost impossible!
Your child may need a harness to keep them safely in their car seat, but most children will become used to car travel if they travel in a car on a regular basis. So you may be restricted to holidays that entail a car as transportation. You may also be limited by how long a journey you and they can manage. On the more positive side, you are usually in control of the environment and can bring whatever you need to keep your child occupied during the journey. Modern technology can be quite useful while travelling if your child is motivated and interested in electronic gaming devices or tablet computers.
For a plane journey, I stock up on lots of small toys or little Lego kits, which are guaranteed to keep my boys occupied for a short while.
Portable DVD players can also be very useful, not only for the journey, but also for when you arrive at your destination and do not need internet coverage to work (unlike some devices). Again, stock up on fresh (second-hand) DVDs and a few firm favourites, all of which you will probably be heartily sick of by the end of the holiday! If your child will wear head or earphones, this is a good idea as not only will it shield outside noise from your child, but it will also mean than other people do not have to listen to the film/music. You can also buy a double headset adaptor to enable two children to watch the same film or listen to the same music. A DVD player with two mini-screens can be attached to the back of car seats for viewing.
Queuing for a plane or train may be impossible. Most travel companies will accommodate the fact that your child is unable to queue if you speak to a representative ahead of your journey and pre-arrange details. You may be offered the choice of your family getting on the transport before anyone else or even waiting until last. If you have an anxious child you may want to get on first, even if this does mean a longer time sitting and waiting to go. Your child may become anxious watching everyone else getting on and think that they are going to miss their holiday. Travel delays are not uncommon and can add additional stress and anxiety to your journey. Children with ASD tend to like to know exactly what is going to happen and at what time, so if you have outlined a timetable to them and then the timetable changes, you may have a child with meltdown to deal with.
We did not attempt to fly anywhere with our boys until they were nine years old and more able to cope with different situations. Every holiday had to be accessible by car until then. You can control your own itinerary to a certain extent by car, although unfortunately you cannot control traffic jams.
Accommodation
Your choice of accommodation needs to be considered carefully. At home, your child may sleep in their own room. While away, you will not be able to leave your child alone in a hotel bedroom. You may need to find a family room where you can all sleep together, or if you are in a hotel, as parents you may need to separate so that one of you can sleep in the same room as your child. An easier alternative may be to rent a house or cottage where you can lock the front door and know that your child is safely inside the house at night. You may need to check ahead with any holiday accommodation to see how secure it is in terms of windows and locks, and whether any outside areas are fenced or not.
If you return to the same holiday setting, then each subsequent holiday will be easier. Your child will be less anxious as they will be used to the different surroundings and know what to anticipate. If you are someone who enjoys a new experience every holiday and wishes to travel to new destinations and be adventurous, you may find it very restrictive to have to repeat the same holiday. However, if new environments are too hard to manage, then you will not enjoy your experience anyway.
We have learned that the familiar means we all get some sort of a break even if it’s a case of a change more than a rest! Our boys are excited to return to somewhere they know and love rather than being anxious about somewhere they don’t know. We as parents still hanker after the exotic, though, and hope that sometime in the future we will be able to be a bit more adventurous with our holidays.
Family Outings Involving Food
Some children may be on a specific diet such as a gluten-free one. They may also be very particular about what food they will eat. You may have to adapt your food cupboards and your meals to accommodate your child’s diet. If your child is gluten-free, does that mean that everyone has to be gluten-free? It may be easier to cook family meals that can be adapted so that everyone eats the same thing. You may have to carry special items of food around when you go out with your family. Even if your child is not on a specific diet, they may have a self-imposed one by being very food restricted. They may only eat certain brands or makes of food or limit themselves to only a few items.
On a family picnic, I have to make six individual different sandwiches, one for each member due to each child eating only certain sandwich fillings. We unload our picnic and allocate the food. Observing this nearby, another parent opening her box of sandwiches was very surprised as she had made the same filling for everyone in her group. Basically, use whatever system best works for you.
While you may be able to accommodate your child’s eating habits at home, feeding them away from the house can be problematic. Encouraging a child who is resistant to trying new foods can be stressful enough for all concerned while in the comfort of your own four walls, but attempting to encourage them eat something new in a different environment may cause a severe behavioural reaction. Always go out of the house prepared. Trying to find something suitable to eat at airports and shopping centres, in particular, can be almost impossible unless you have a small child willing to eat a very varied diet.
At one stage, I always took pizzas with me when on the rare occasions we were invited to someone’s house for a meal. Firstly, the boys would be sure to eat them, and so we would avoid meltdown due to hunger or low sugar levels. Secondly, pizzas make very little mess for the host or hostess and no additional ‘cooking’ is required.
A packed lunch is another option. If you explain to your friends that it is not a rejection of their hospitality but that, in fact, it means you can visit them with less fuss, most people will try to understand.
All children need regular mealtimes and you may find this particularly necessary for your child with autism. If you feed your children at regular times, even if they cannot yet tell the time, their body clocks will be set to a certain time, and if food is not produced you may find your child in meltdown mode. This can be difficult to manage when travelling, being out for the day or visiting the house of a friend who does not understand the importance of your children eating on time. Always keep emergency snacks and drinks in the car or in your bag, if possible, to avoid a hungry, angry child.
Our car is always stocked with drinks and biscuits and, in fact, our youngest child treats it now as a café so as soon as we begin a journey, he asks for a juice.
What is a ‘normal’ family life?
Living a normal family life is not always possible. What is ‘normal’ anyway? The perception of family life in today’s society is much changed; the old stereotype of mother, father and 2.2 children hardly exists anymore. It has been replaced by single-parent families, same-sex partnerships and unmarried parents of children. The average age at which a mother gives birth to her first child has also increased in the last generation. In the UK, with contraception readily available, people are choosing to have fewer children and sometimes choosing not to have those with known disabilities born at all. In past centuries where abortion and contraception were not readily available, people did not have the choice of whether or not to have a child, as without medical scans and tests they would have been unaware of the possibility of a child having a disability. Medical care was much less skilled, so many children would have been born without the aid of caesarean deliveries and other technical medical advances, so there were probably more disabled children born as a result. Disability may have been more common, but was it better accepted than it is now?
Only a few generations ago, special needs children were expected to be cared for in some form of institution. They were not seen out in the community and rarely lived at home with their natural parents. Children with disabilities were sent to special schools and not expected to attain much in life. There was not much therapy on offer; certainly not for children who probably had autism but were in past generations labelled as having learning disabilities and having little potential to succeed in anything. At least we have moved on from ‘refrigerator mothers’ and autism is now a commonly accepted diagnosis, albeit one that is often misunderstood.
So, at least now, it is ‘normal’ to keep your child with special needs at home with you and your family and to care for them yourself. Nobody will ask you why your child lives with you or find it strange that you look after them. There are some residential schools which, in some circumstances, may be the best option for older children who may require very specialized care and education, but young children are usually cared for in their own family settings. Unlike other disabilities that may be present at birth, autism will not become apparent for a few years at least, by which time the child is already accepted as part of his or her own family. Some parents do decide to have a baby born with a disability fostered or adopted from birth, but no parent of a child with autism would be in a position to do this as autism is not diagnosable at birth.
So, at some stage in your child’s life, probably at a young age, they may be given a lifelong diagnosis of autism. How you react to this is very individual, but what you do from that time onwards will be vital for your child’s future. You as a parent are the most important person in your child’s life and you can make such a huge difference to how your child progresses. You will need to take on many more roles than most parents and become carer, teacher, therapist, advocate and many others. You may be required to fight battles on your child’s behalf and find huge quantities of inner strength and outer energy.
Being the parent of a child with special needs can be one of the most exhausting roles you have ever had, but also one of the most rewarding as you watch your child develop skills you thought they might never acquire.
So keep going! Never give up hope! There is always light at the end of the tunnel.