It’s a Saturday morning and an excited Isla waits patiently for a black van to pull into our driveway.

She lets out an excited squeal and rushes to take her seat in the van next to her best friend Samantha.

They soon set off on their morning adventure with their carers Maddie and Ruby.

These outings have become common place each weekend and are a great way for the girls to get a little independence.

They are quickly progressing towards becoming teenagers so it’s nice for them to experience a little of what their neuro-typical peers might be doing at this stage.

Hanging out with their mates without their parents around.

Each week the girls discover somewhere new such as the museum, tenpin bowling and recently a trip to Devonport.

Their outings had to be reined in a little with the latest Covid outbreak here in New Zealand.

They avoided  trips on public transport for a while as the girls wouldn’t tolerate masks.

There have been lots of picnics and fish and chips on the beach but for our girls the trip in the van would have been just as exciting as the destination.

Samantha and Isla have been best friends since Isla joined the satellite class at the local primary school when she was 5.

They have a special connection and even though Samantha is non verbal, they have no problems communicating.

They share the same sense of humour and they just love being together which is helped by Sammy’s easy going nature.

Isla struggles a little with friendships and we tend to avoid playdates and having to deal with the inevitable conflict that arises due to Isla’s rigid ways.

Isla finds friendships a little easier with adults as the rules are more defined and there is more flexibility.

When asking Isla what she loves about her trips out she says “the treats of course”!!! but also adds the laughing.

She says that she loves Sammy because she knows her and she’s always by her side when she needs her.

We have been lucky to have had some lovely young ladies help us take care of Isla.

They all bring something different and teach Isla new skills. It also gives us some respite for a few hours per week

Sitting through a live rugby match I thought would be out of the question for Isla. But not only did she do it…she actually enjoyed it too!

We only had to come inside 10 minutes before the end as the rain had set in. Luckily, she was still keen to watch the end of the game inside.

If it wasn’t for my husband Gareth booking tickets without my knowledge I would never had agreed.  A rugby arena with lots of people, noise and stimulation is pretty hard to navigate when you have sensory processing issues. I must admit I have got into the habit of not challenging Isla (or myself) to experience new things and opt for easier options.

I knew this meant a lot for Gareth that we all could go to the rugby together. So I decided we needed to give it our best shot. I also had a backup plan that we could leave if it got too much as luckily our hotel was not far from the arena.

First thing we had to do was upgrade her earmuffs. Isla had preferred a softer variety but had come to her own conclusion that they weren’t too good at blocking out noise.

We were also fortunate that Isla had attended “holiday club” and had spent some time with her ex teacher who knows her well. Isla must have mentioned that she wasn’t looking forward to the rugby because it was boring. The teacher mentioned to me she had been trying to tell Isla that we do lots of things that she liked so maybe she needed to give it a try. This was a huge help in helping Isla adapt to the idea.

Finally there was some bribery in the form of hot chips!

To be honest I probably found it more stressful than Isla. Waiting for her to react to all the people, worrying when the rain started falling and when the cheering started. Isla did look a bit worried at first but then visibly relaxed and by the end was cheering with everyone else.

It has become so easy to take the safe option. This was a bit of a wake up call for me that we have to keep challenging Isla and get her to experience new things. I am sure some outings will not be as successful but it is always better to give it a go than not try at all.

At the age of 11 we have settled into our life with Isla and autism and all that it brings. Our days are full of love, laughter, compromise, cuddles mixed with a little frustration.

Love

Isla has so much love to give. She loves the people close to her with all her heart and she misses them when they are not around. I wouldn’t say she is empathetic but she is caring and she strives to be kind. She greets people on the street with a friendly hello even when it is not returned (this is often). When I’m stressed she tells me just to “breathe in and breathe out” and she will try and calm me with a shoulder rub.

Laughter

She cracks us up every day whether she is meaning to or not. Her unique observations of the world and the way she phrases things are hilarious. Sometimes we have to try and keep a straight face but she enjoys making us laugh and never gets offended. Isla is becoming very opinionated as she gets older and she is very clear about the way she wants things done. It’s not hard to appeal to Isla’s sense of humour. She has always been easy to make laugh and it still doesn’t take much. A good knock knock joke never goes amiss, and her speciality is telling jokes that don’t make sense. She will crack herself up laughing and you can’t help but laugh along.

Compromise

Or should I say bribery! This is an every day occurrence and one I’m glad is effective otherwise we would get nothing done. Get dressed and you can have the iPad. Have your breakfast and you can watch the TV. Go for a walk and you can have the Nintendo Switch. You see a common theme here? Yes Isla still loves anything with a screen. Highly motivating but also highly addictive. There is a fine line here.

Cuddles

Isla will come into our bed in the morning, put her legs in between mine, suck her finger and often go back to sleep. She is very affectionate and there is no sign of this wearing off just yet. Even though she is getting a lot bigger she is still very much my baby girl.

Frustration

This is caused by the destructive nature of Isla when not preoccupied with something constructive. She has real trouble staying on task and gets very easily distracted. Pens, sunglasses, earphones and light fittings are not safe when Isla is around and will end up broken and discarded. She is hardly aware of when she is fiddling and breaking things. Self-care is still also a painfully slow process. It is so easy to underestimate how difficult it is to practice the most basic self-care tasks. Let’s just say this still can be a rather messy affair. Isla also has some other undesirable habits such as burping that we cannot seem to change no matter what course of action we take.

Adaption

Isla’s behaviour is manageable most of the time. If we push things too far or go out without the appropriate toolkit then it can be a recipe for disaster. We know her limitations and we know ours. There is always something we haven’t allowed for but these days it is pretty easy to diffuse the situation using the coping strategies she has learnt, as long as she’s not overstimulated. There are a few sacrifices we have had to make in our daily lives. Gone are the days of being totally spontaneous but it is a small price to pay.

Isla and I were walking to school. There was a student who stopped to walk with us down the hill to school. Isla felt uncomfortable with this so increased her pace with her assistance dog and started walking ahead.

I struck up a conversation with this young lady and started making small talk asking her about school. “What year are you in?” I asked, “What are your plans for Secondary School?”. Presuming she had an interest in Isla and her dog I asked, “So do you know much about Room 29 at school” (aka as the satellite class)? At first she was puzzled and then said “Oh yes that’s the class with the weird kids”.

My heart sank.

“They aren’t weird they are were just born a bit different” I replied. I was scrambling to provide a teachable moment. “It could be your brother or sister”. “All the kiddies have different qualities” I went on. “They can be funny and have the kindest hearts”. “Isla is so sweet”, she replied. “I can see that and I always feel bad when the other kids make fun of them” she said.

My heart sank further.

We were then at the school gate and I was happy to get away as I really didn’t want to hear anything more. I was also left with so much I wanted to say. I wondered if I had said the right things to defend our kids. Did I change this student’s view of the “weird” kids at school?

Should I have insisted she stand up and question those fellow students when they said nasty comments about Isla and her classmates?  Should I have given her some different word options other than “weird”! “And if so, what?”.

This truly came from the mouth of babes. Of course I am naive to think this doesn’t happen to some degree at school. I often see it from the look on kids’ faces without them having to say anything at all. I am just grateful it all goes over Isla’s head. My sweet girl who thinks she’s unique and special and not weird at all.

Isla is in the second to last year at her school. She attends a satellite class within a local primary school.

We started off with mainstream schooling while we fought for funding to get her into the environment that suited her best. Once there she has flourished and although I would have liked to see some more inclusion at times, her years at school so far have been happy. Knowing she is in a class that meets all her needs really takes the pressure off as a parent.

We are now looking at options and need to make decisions about how the next 5 years of her schooling will look at Secondary School. I always thought once we were at this stage, she would be ready for more and it would be a good idea to push her to new limits to prepare her for the real world and be part of the Community.

However, the closer we get to this time of transition the more the I realise the real world does not apply for her and probably never will. I don’t see the point in exposing her to a life of anxiety and overwhelm.

The romantic idea of her fellow students embracing her for who she is and her fitting in in her own way has worn off over the years. Teenagers are not as accepting and nurturing as 5-year olds and there is also the fear of being bullied, ridiculed and not understood.

It is not realistic and is not actually what Isla wants anyway.

Her Community are her friends in her class that she has had since she started school. Along with family, this is all that matters to her.

Fortunately for us there is a new Satellite Class being built at a Secondary School next door to us. She can easily walk to school via our back gate.

There has been a real shortage of options for teens and this project has taken years to get off the ground. With everything going to plan this will be ready for Isla when she is ready to make her move.

Hopefully Isla will get the best of both worlds here.  I am really hoping she will gain opportunities to integrate a little into a mainstream setting and gain social awareness. In return I hope students and families in the broader school community will benefit by becoming aware of and accepting towards difference and diversity in their society.

 

I dislike puberty.

It is changing our sweet girl’s body into a woman’s but her mind is still a young child.

It is preparing her for periods and adulthood when she still prefers to play with Peppa Pig.

I dislike puberty.

It is explaining becoming a woman means she can have children but not having the heart to explain that she never will.

It means she is growing up and her behaviour will be judged and less accepted.

I dislike puberty.

It is teaching her modesty when she has no concept of sexuality.

It is protecting her from predators and trying to keep her safe.

I dislike puberty.

It is wondering how WE go about shaving body hair.

It is preparing for the seemingly impossible process of applying braces.

I dislike puberty.

It is finding a bra she will have the motor skills to put on on her own.

It is getting her used to dealing with the feel of sanitary items when she cannot tolerate wearing a plaster.

I dislike puberty.

It may mean more drugs and wondering if she will use a sippy cup with formula forever.

It is preparing for possible increased seizures.

It is teaching independence but keeping her safe at the same time.

It is confronting and uncomfortable.

But like every other obstacle we have to overcome we will get through this too.

But I still dislike puberty.

Our 11-year-old daughter Isla doesn’t have much stamina. She has to work much harder than most to coordinate those easy movements we do subconsciously. My husband and I are keen walkers and ideally would love Isla to be able to join us. However, we are not able to cover any distance as she tires easily.

When Isla was a little younger and smaller, we were able to take her for a ride with a tow-along bike. This gave us all much needed freedom and our ride along the paths of Wanaka in New Zealand’s South Island is one of my favourite holiday memories.

This year while on holiday in Wanaka for a second time, we realised that Isla was now too big for a tow-along bike. So, we decided our goal for this year would be for Isla to learn to ride a bike independently.

We had tried various things in the past. When younger she had trainer wheels and a handle on her bike. She didn’t have the motor skills to pedal and it wasn’t long before the handle broke off due to the pressure placed on it through pushing and steering. Then there was some success with a trike in the back garden and Isla being able to master turning the pedals. Over the years she also had the opportunity to practice this skill on 3-wheeler bikes at the Special School she attends.

There is a company here in New Zealand that makes custom bikes for kids with special needs. This was definitely a consideration for us but they are really expensive and also hard to transport from place to place.

We then discovered you could actually purchase larger trainer wheels online. We had a bike that used to belong to one of Isla’s sisters. We purchased and attached them and our mission ‘To Ride a Bike’ begun.

With Isla having poor spatial awareness, no fear of danger mixed with high anxiety and weak muscle tone, there were a few things to take into consideration when starting out.

We started on a nice, flat wide path in the park surrounded by grass. She took to it straight away and zoomed off which was great to see but also a little unnerving. She got so far ahead of us and I didn’t know if she would remember to apply the brake!

We have since figured out that I need to talk her through each step. I need to tell her when to apply her brakes, tell her not to stop when going around a curved hill and to tell her to move over when someone is approaching. All of these things have to be practiced over and over until she masters it. I see little children riding their bikes so naturally, just as my older girls did when they were young, and it just makes you realise how much harder she has to work in all areas of her life.

The only thing with bikes having larger trainer wheels are they are prone to tipping easily. With the wheels being wider than the bike at the back, it is easy to have one wheel off the path making it unstable. After a couple of close encounters one of the first things we did was to train Isla to put her feet down if the bike was tipping to help steady it.

With the Covid-19 social restrictions being put into place here in New Zealand, we are only allowed to leave our homes for exercise in our local area. This has become a great opportunity to get out on the bike every day. Getting Isla out the house to do any physical activity is difficult unless she is highly motivated.  Luckily, she is always keen to go for a bike ride.

Having autism Isla enjoys speaking her mind and doesn’t care what people think of her. She has taken the 2-metre distancing rule very seriously. She rides along ringing her bell yelling 2 metres away!!!! Are you 2 metres away? Although this is often embarrassing, it is highly effective for getting people to move away from us!

We practice on the same route every day, so she learns how to control her bike with various gradients. She is definitely improving each time we head out. I am hoping she will get to the point where we can remove the trainer wheels and she will have total control over her bike and her body. Like everything in Isla’s world patience and repetition is key.

Being Autism Awareness Month and also being amongst a Covid-19 Worldwide Crisis I can’t help think of some similarities between the situation we find ourselves in with the lockdown and social distancing.  Its what most autism and special needs families are faced with every day.

I am not downplaying the seriousness of the reality of this situation and realise I am one of the privileged and lucky ones with a lovely house, financial security and healthy children.

My heart goes out to those who have lost their lives, their livelihoods and health. I understand there are many essential workers putting themselves at risk to support us and I am in fact grateful I can be in isolation to keep myself and my family safe.

With all of that aside we are not finding the restrictions placed on us as disruptive as others and it’s not all doom and gloom. Autism has already restricted us and many other families in many ways and will long after this crisis has passed.

Social distancing

A lot of people are having to adjust to staying at home and change how they live their lives. This happened a long time ago for us with having a daughter with autism.

We have limits on what we can do as a family. We avoid large gatherings and events where she will become overly anxious due to the noise and number of people. Or we tend to stay away from situations where big and inappropriate reactions and noisy stimming are often not welcomed.

Visiting friends is sometimes difficult. Like taking an inquisitive toddler to a house without any child proofing making it difficult to relax and socialise.

Isla prefers to stay at home the majority of the time as this is her safe haven. This is often easier for us and has become our new norm. As a result this has actually made us closer as a family and we prioritise outings and supporting our other children with the help of carers for Isla.

Isla excels at social distancing. Although she misses school and activities she thinks all her Christmases have come at once!

Being adaptive

Having a child with autism means we are always looking for different ways of living life. We tend to focus on life skills rather than academics. Celebrating the small wins and letting go of the comparisons. Concentrating on what works for us even if outside the social norm.

During these times families are having to be really creative to find out what works best for their families. They may find with life slowing down they have more opportunities to teach life skills such as folding their clothes, cleaning or baking. They may realise these skills are equally as important as the academic ones.

Having a more holistic approach is certainly the case for us. We are extremely fortunate to be within the special education model where this is provided for us every day at school. Also through extra-curricular school activities and holiday programmes.

Other families end up with no choice but to home school their children. They do not fit within the school system set up for neurotypical students or within special education as they do not meet the criteria. They are unable to return to work or have any time to themselves at all. This requires a huge amount of adaption, resilience and is very isolating…all of the time.

Future unknown

For most average people in lockdown the factor driving anxiety is uncertainty and lack of control.

For anyone that has a life changing event in their lives can appreciate this all too well. This includes parents who have had a child diagnosed with a life altering disability. We have had to learn to take one day at a time and not look too far ahead as is too stressful and brings anxiety.

Focusing on the worst case scenario is not a healthy thing to do as I have found out. For me being well informed and putting a plan in place is something constructive I can do to alleviate my anxiety.  Also finding things you can control such as helping a friend in need rather than concentrating on your own problems can make you both feel better.

Our daughter Isla has autism. Although she loves structure and routine I struggle sticking with the simplest of schedules. Here are some ideas that have helped us plan our days and hopefully may help others.

Give yourself a break

The best thing we can do to support our children emotionally is by keeping calm and having some sort of structure. That doesn’t mean we need to place more stress on ourselves trying to do that. Every hour doesn’t need to be accounted and it’s okay to have some down time.

Schedule your day

Not just for them but also for you. Start by adding what you want to achieve in your day to your schedule. Use those times as device/screen/TV time. Then schedule in activities around that. Use a visual schedule and use a timer for each activity that counts down, so your child knows how long they have got left.

Activities

This is the perfect time to focus on life skills rather than academics. Choose one life skill you are trying to get them to master and work on that for a week until they have mastered it. Try not to bring in too many at one time as repetition is needed to cement that skill.

For learning opportunities pick a topic of interest to your child and base any work around that. For example, our daughter with autism enjoys nature and birds in our garden. We are identifying the birds and finding out what they eat. We have created a project in the literacy programme Clicker. We made a bird feeder and are hoping to attract some birds so we can take some photos.

Create a visual choice board of available free time activities. This will give them options to choose from. Help your child get out all that is required for the task and help them get started. Praise them for staying on task and be prepared to keep it short if necessary.

Include Sensory Play. Although sometimes messy will help regulate your child.

Bribery & Rewards

Plan your schedule so rewards follow tasks your child may find more challenging. Or create a sticker/star chart where a chosen reward is given for good behaviour and sticking to the routine. If your child doesn’t respond to reward charts have instant rewards during the activity to reaffirm the desired behaviour. If you are choosing device/screen time as your reward, be prepared for having to withhold those if you do not get the desired behaviour. As this is sometimes the only option to allow you to get things done you may have to choose a different reward!

Makes Some Rules

Just like school write up the rules for the household.

Self-care

Don’t forget to take some time for YOU during this time. Schedule in some exercise and get outside as much as you can even if it’s in your own garden.

Movement

Exercise isn’t important just for us but also for our children. Find whatever motivates them and get them moving. Isla enjoys her bike, so we go out for a ride each day. We are able to do this at the moment here in New Zealand, but it could be an obstacle course or dancing for example.

Connect with others

Zoom or Facetime calling gives them an opportunity to connect with their friends and extended family. We have a call each day with a couple of Isla’s friends and all work on an activity together. This is highly motivating for Isla.

At the end of the day we are all trying to do the best we can and remember you cannot pour from an empty vessel.