Making the holidays successful for children with Autism (and the family too!)

December 28, 2017 / / No Comments

With the festive season and end-of-year celebrations almost behind us, the prospect of surviving the next 4 weeks of holidays with the kids can be daunting, especially for parents of children with Autism.

Days spent at home, visits with friends and family, day trips and special activities are a potential minefield for children on the spectrum, many of whom rely on the day to day routine of school or kinder to bring some order and predictability to their lives.

So how can we support our kids with Autism to get the most out of their holidays, as well as accommodating the wishes of siblings and staying sane ourselves? Here are a few tips that may help.

Keep a routine

Creating some structure in an otherwise unstructured day can go a long way to minimizing the anxiety that holidays can elicit in children with Autism. While some children manage well with the changes that holidays bring, for other children it can be extremely unsettling. If your child needs the security of routines, keeping the morning routine the same each day (e.g. get up, have breakfast, brush teeth, get dressed) can be a great way to start. This doesn’t have to happen in a rush, like it might do during the school term, but the familiarity of following a routine and knowing what needs to happen next can be a great source of comfort. Alternatively, you may want to try introducing some new holiday routines like staying in your pajamas until lunch time, and this can be a lot of fun. The key here is to let your child with Autism know what is happening and what to expect, so they are not anxious about the unexpected.

 Use visuals

Regardless of a child’s level of language, visuals can be a powerful way of supporting a child with Autism to understand what is happening in their day and what to expect. Whether it is using a picture schedule to communicate the activities of the day, creating a social story to illustrate what a visit to the zoo will look like, planning out the week on a calendar, or writing a list of important dates and events coming up, visuals are a fantastic tool that can be used to reduce a child’s anxiety about changes in routine and activities that are new or unfamiliar.

Provide activity ideas

For many children with Autism, coming up with ideas of what to do to keep themselves occupied (besides the iPad or computer) can be challenging, resulting in a chorus of “I’m bored” that can drive any parent crazy. Surprisingly, this isn’t necessarily about a child being difficult, but more often a sign that their skills in generating ideas and imagining possibilities are delayed and that they need a bit of support. Spend some time brainstorming possible activities that your child can do at home either unsupervised or with your supervision (and get them involved in the process if you can), then create a visual board or list of all the possibilities that your child can refer to when they cannot think of what to do. You can add or remove activities depending on your availability and the day’s events, and to keep things interesting. For example, you may have ‘cooking with Mum’ on the list one day, but take it off and replace it with ‘water play outside’ on a day when cooking is not convenient. Making sure the equipment or toys needed for each activity are readily available will also make it easier for your child to be independent in their choices and play.

Schedule in ‘down-time’

Even for children and adults that love to socialize, and many children with Autism definitely do, being with other people and in different environments can be emotionally and physically exhausting. It takes a lot of energy to pay attention to everything that is going on around you, process sensory information, make sure you are behaving appropriately, predict what other people might do or say and engage in the activities being offered or conversations that are occurring. When you consider all these factors, it is little wonder that children with Autism are often ‘burned out’ after social interactions or may go into meltdown afterwards as a result. To support your child to manage the demands of these events, deliberately scheduling in some down-time at home can make a big difference. For example, spending the day at home after a big outing watching DVDs, building Lego or playing with water, whatever is calming for your child, will give them the time they need to recharge ready for the next adventure, and hopefully give you some time to recharge your batteries too.

Have realistic expectations

As parents, the holidays are often the time when we want to make opportunities for special outings and creating family memories, and we can become disappointed when our child with Autism ‘ruins’ our plans. I have found that this is usually more a reflection of us having unrealistic expectations of our child’s behavior than it is about the child themselves. While an event may be special to us, that doesn’t mean that a child is suddenly going to be able to manage their anxiety, behaviour and emotions any better than they would on a typical day. Consider what you can do to support your child to manage the best they can by preparing them for where you are going and what will happen while they are there, and be open to your child experiencing the event differently to you. While you may want him or her to enjoy the atmosphere and join in, it might be enough to expect that they are there with you but sitting quietly on their iPad with their headphones in because that is all they can manage right now. That does not mean that your child will never be able to participate more in the future – it just means that your expectations need to match your child’s abilities right now.

Set them up for success

In keeping with the idea of having realistic expectations, sometimes we inadvertently set our children up to fail by not recognizing their limits and pushing them too far. I am not saying that we shouldn’t help our children step outside their comfort zones – I think that is extremely important. What I am saying is that sometimes we do it too hard or too fast, and then get upset when our children don’t manage. For example, if you know that your child can only manage 30 minutes at a shopping centre before becoming distressed, planning a 3 hour clothes shopping marathon with them is going to end in disaster. Knowing your child’s limits and planning around them means that you might only attend an event or activity for a short amount of time, but have a successful and happy experience being there, instead of trying to make them be part of something they can’t manage, and everyone ending up upset because it didn’t turn out the way you wanted. Planning in this way can be particularly difficult when you feel like siblings are missing out because you have to cater to your child with Autism’s needs, but this can often be accommodated by having a parent or carer leave with your child with ASD, while the other parent or carer stays with the sibling, or enlisting the help of friends and extended family. While this may not always be ideal, the more positive experiences your child with Autism has in different environments, the more likely it is that they will develop the skills they need to participate more and for longer in the future.

Know your child’s signs of stress

As a parent, you know your child better than anyone else, and sometimes even better than they know themselves. For many children with Autism, understanding and regulating emotions can be extremely challenging and the cause of a lot of confusion. Although a child may have difficulty identifying when they are becoming stressed or overwhelmed, they often demonstrate behaviours that tell us how they are feeling, and if we pay attention we may be able to intervene before they get to boiling point. If you notice signs that your child is getting stressed, taking action immediately will be most effective. This may mean taking the child to a quiet area away from others, going for a short walk, or having a big cuddle. It can also be useful to have a ‘bag of tricks’ with you that includes some snacks, a favourite toy, some sensory objects, and maybe a phone or iPad, anything you know will help your child calm down and regulate their emotions and behavior better. Hopefully, if you get in early, your child will be able to calm and then get on with whatever it is they were doing. In helping them reset and calm down, you are teaching them a valuable lesson in recognizing their emotions and that taking action can help them feel better.

Have a contingency plan (just in case!)

While I would love to tell you that following all these tips will mean the holidays will go without a hitch, that is not the reality. Even the best laid plans can fall apart, and when you have a child with Autism, you never really know if or when the wheels will fall off. If, after all your careful planning and preparation, you child struggles to manage their behaviour or goes into meltdown, it is important to know what you are going to do. Planning how you will respond beforehand gives you the time and energy to consider all your options, decide on the best response, and be prepared to jump into action with confidence if the need arises. The more calm and in control you are, the better your child will respond, and the sooner you can resolve the situation. Depending on where you are and what you are doing, your plan might be to take you child to a quiet room to calm, or you might have no option but to pack up and go home as quickly as you can. Whatever your plan, don’t be afraid to stick to it regardless of the opinions of others. In a calm moment later on you can reflect on what worked and what didn’t, and change your plan for next time if you need to.

Although the holidays can be a challenging time for children with Autism, they can also be a wonderful opportunity to rest and recharge, have new experiences and make new memories. Whatever your plans for the holidays are, I hope you have a safe and happy time with your families.

Is Play Therapy the missing link in supporting children with PDA?

December 14, 2017 / / No Comments

I recently had a ‘light bulb’ moment while attending a Play Therapy Workshop at Deakin University. It was the kind of moment where something makes so much sense that you can’t understand how you didn’t see it sooner and why someone else isn’t already talking about it.

I was listening to two fantastic speakers talk about the importance of play for development and how children who may have missed going through developmental stages, perhaps due to trauma or disability, are likely to have ongoing social-emotional problems. The good news was that these children can often be taught the play skills they have missed to assist them to make progress in their social-emotional skills.

Then they introduced the idea of Non-Directive Play Therapy, a type of play therapy in which the child is given the opportunity to be fully autonomous in the session and choose whatever they want to do, while the therapist supports and engages them on the child’s terms – no questions, no demands, no direction. This type of play therapy allows the child to explore their innermost thoughts and feelings through play in a safe, secure environment with a trusted adult, and can lead to significant improvements in emotional regulation, social skills and relationships outside the therapy room.

Then the penny dropped – I know a number of children who have uneven development, have social-emotional difficulties and don’t cope with demands! They are my clients with Pathological Demand Avoidance.

Then I wondered – Could Non-Directive Play Therapy be the next step in supporting my clients with PDA?

It seems logical that a therapy that allows a child to be fully in control and free of demands would be perfect for children who are hardwired to avoid demands at all cost.

One of the most notable things I have found when working with these beautiful children is that they can become really good at understanding anxiety and emotional regulation, and knowing what they should do to appropriately manage their behavior, but they are so dysregulated and heightened that they just can’t access that information to manage their anxiety when they need to. It really makes sense to me that supporting children with PDA to process their emotions and experiences in an indirect way and in a non-threatening environment could be an effective way to assist these children to bring their social-emotional development to a level where they can consolidate it with their knowledge and make positive changes.

Obviously all children are different, and one therapy is not likely to work with all children, but learning about Non-Directive Play Therapy has given me hope that this is another tool we can used to reach a group of children that are notoriously difficult to engage.

I have decided to embark on my own adventure to further my knowledge and expertise in Play Therapy, and have enrolled in the Master of Child Play Therapy at Deakin University. My hope is to conduct my research project on “Non-Directive Play Therapy and PDA”, and to be able to share my findings with families and professionals to increase understanding and supports for the PDA community.

In the meantime, I am happy to be able to support my clients with PDA and their families, and to continue to learn from them as the real experts in the field.

If you or anyone you know has experience with Play therapy and PDA, I would love to hear from you. You can contact me at raelene@okeydokey.com.au.

A Note about Pathological Demand Avoidance:

For those of you that haven’t heard about PDA, it is considered to be a subtype of Autism Spectrum Disorder characterised by extreme levels of anxiety which result in resistance and avoidance of demands. You can read more about PDA here: https://www.pdasociety.org.uk

 

Removing the word ‘should’ from our vocabulary when it comes to our kids.

December 10, 2017 / / No Comments

He should be able to pack his bag on his own.

She should know not to jump on the couch.

I shouldn’t have to tell him to get dressed in the morning.

We change over readers every day, she should just do it when she comes into class.

He should know better than to throw things when he is angry.

 

Do these comments sound familiar?

I think parents and teachers everywhere can relate to the frustration of having a child that just won’t do what we think they are capable of doing. But why aren’t they consistent with what they can do? And why does it bother us so much?

While it is important to have expectations of our kids, to challenge them and teach them to be responsible and independent as they get older, we seem to be in a hurry for children to grow up and do things for themselves. Then we become upset or disappointed when they don’t meet our expectations.

Don’t get me wrong. There are certainly some skills where we seem to be more open to accepting mistakes and setbacks. Toilet training is one of these skills. When a child is learning to use the toilet, we expect that there are going to be accidents while they learn to recognise the signs that they need to go, and get to the toilet on time, as well as mastering associated skills such as being able to pull their pants up and down and using the tap to wash their hands. We even expect that after they are reliably trained, there might still be the occasional accident, and that’s alright.

Why, then, do we not expect children to make mistakes and have setbacks with their other skills and behavior? And why do we often view those setbacks as deliberate actions rather than unintentional errors? Just because a child has shown us they can do something, doesn’t mean that they can do it successfully all the time.

When we get caught up in what a child should be doing, we lose sight of what they are telling us they need. Instead of becoming frustrated, we can be curious about what we can do to help a child succeed. We can still encourage a child to do things for themselves, and ask them to complete tasks independently, but not keep expecting them to do something because we think they should be able to do it, especially when they consistently struggle.

Being more flexible with our expectations of what our children can do on any given day, and focusing on how to help them rather than on what they should be doing, doesn’t just help our children, it gives us permission to do what we need to do to make things easier for everyone instead of feeling the need to teach a lesson or prove a point.  For example, if you are encouraging your child to be independent in getting dressed for school and you know they have the skills to do it, but they are always getting distracted in the mornings and making everyone late for school, you could put aside a few minutes to be with them and help them get dressed quickly instead of getting frustrated with them every day for taking too long. This will help your child succeed in completing the task and relieve your frustration in them not getting it done quickly, making for a much calmer morning for everyone.

Here are my tips for letting go of the ‘shoulds’ and helping our children do the best they can:

Meet them where they are.

We know all children are different, but it is difficult not to compare when siblings and classmates are doing things that your child is not. Unfortunately, when we compare a child with others, we may develop expectations that are out of reach for an individual child. It is important to consider what skills your child has and what they can do right now, and use that as a starting point for further development. Supporting your child’s independence within their current capabilities helps build confidence, then you can support them to develop the skills necessary to continue to achieve.

Identify barriers to learning.

There are many factors that can impact on a child’s ability to acquire skills and be more independent as they grow. For children with diagnosed disabilities such as Autism and ADHD, common areas of difficulty are widely known and understood, and are more likely to be considered when forming expectations of behavior. However, typically developing children can have similar difficulties that may not be identified or acknowledged, leading to our expectations of behavior being unreasonable. Problems with executive functioning, emotional regulation, memory and sensory processing can all affect a child’s ability to complete tasks and manage their behavior appropriately. If we are aware of these difficulties, we can support children to overcome or accommodate them effectively.

Consider what is required for success.

How much help is too much? As adults we sometimes need help with tasks that we can usually complete on our own, and children are no different. When children show us they can do something on their own, like getting dressed, we are often then reluctant to give help because they should be able to continue doing it on their own. But there are many things that may impact a child’s ability to do things on any given day including tiredness, disinterest, illness, and distraction. Being aware of what assistance your child may need and putting these things in place, whether it be visual schedules, lists, rewards charts or physical assistance, and being willing to give more help when required, will support your child to develop their skills and be successful in their efforts.

Remember that children usually want to do the right thing.

It is my experience that children overwhelmingly have good hearts, and really do want to do the right thing, but they are not always good at making the right choices or controlling their behavior when they need to. For parents, this poor decision making or lack or impulse control can be easily interpreted as a child deliberately ignoring instructions or trying to upset you. However, children are more often concerned with their own needs instead and may not be able to consider their actions until it is too late. When we take a child’s behavior personally, we are bound to be disappointed and frustrated when they do not meet our expectations, and our children in turn may feel that they can never do anything right.

Accepting that our children will have setbacks and make mistakes, being there to support them when they do, and helping them find ways to do things better, does not mean that we don’t encourage them to develop independence and responsibility. It means that we adjust our expectations and acknowledge they are human and wonderfully imperfect just like us.