My Epiphany!

Several years ago I participated in a challenge titled "52 Weeks of Handmade."

The idea of the challenge was that for every week of the year, you would attempt to make a handmade item - be it through crochet, hand sewing, machine sewing, knitting, cross stitching and so on.

The first year that I participated, I am very happy to say that I did in fact manage to create an item every week of that year. At the completion of the challenge I had completed over 52 items.

Last year, however, it was a completely different story. I bombed out very early on in the year but admittedly we did have quite a challenging year in 2017. By the completion of the challenge I still managed to complete a number of items but not as many as I would have like to have made.

The challenge is on again this year and as I was reading a post about the challenge on a social media site a few days ago, I had an epiphany!

We haven't yet been able to unpack my sewing machines, yes I have two, and I honestly really miss sitting at my machines creating items for O and L. I also desperately want to get back into the habit of sitting down in the evening and doing some hand sewing or crocheting. And I have been trying to figure out why I need to sew so badly on a regular basis.

It's certainly not because I or my children need the stuff that I make, although I do think that I am able to make nicer clothes for my children than I could afford to buy. Actually come to think of it, O does need a few more pairs of her favourite style of shorts - little miss has had some what of a growth spurt over the last four weeks!

I have noticed that if I go for more than a week without sewing, be it hand or by machine, I become quite anxious and I've been trying to understand why.

When I was reading the 2018 52 Week Handmade Challenge I realised what it is - I was hit with my epiphany!

When I sew my mind goes blank. Everything that is bothering me and stressing me, just falls to the side. Being creative is like therapy or meditation for me. I get the opportunity to have a complete mental break and am able to concentrate on what I am working on.

Sewing, being creative, is part of my self care routine! 

So wish me luck as I embark on the 2018 52 Week Handmade Challenge. I'm going to give the challenge my best shot!

The Autism that You DON'T see.........

"Oh, L is fine at school!"

"We don't see any of that, O is the model student!"

"Really, O/L is like that at home?"

These questions, these statements, can make interactions with teachers, educators and medical professionals quite uncomfortable. In a blink of an eye, questions and statements like these can turn a conversation from a pleasant one into, well ........... hackles become raised, voices become emotional ......... you get the picture.

Questions and statements like these can make the child's behaviour seem as though the parent is at fault and this in turn can cause us to question every little decision that we make and have made on our child's behalf.

Questions and statements like these cause a parent to shut down and not want to bring up issues with those who should be supporting them, instead of questioning them, for fear of the underlying judgement from others.

Questions and statements like these really highlight the autism that you don't see unless you are in the immediate family unit.

It really is a case of the autism that you DON'T see.

You see a child who is so rigid and seemingly unwilling to compromise on anything that their behaviour becomes annoying to you. The child who is acting like a spoilt brat.

I see a child who wants his world to stay the way that it is because then his world is predictable. I see a child who doesn't want to stray from her predictable world because the minute that her world becomes unpredictable, her anxiety is provoked into action and she becomes glued to one spot unwilling and unable to make any moves. I see child whose anxiety is like a tightly knotted rope and until that knot is loosened, she is physically unable to move or speak or participate in her much loved activities, including school work. A child who is not yet sure how to loosen the knot of anxiety. I see a child who is desperately trying their hardest NOT to enter into meltdown mode. 

I see a child who has strict and often very complicated routines and rituals for simple every day activities. And these routines and rituals have to be done the same way. Every. Single. Time. The tiniest deviation from these routines and rituals can result in an explosion of a huge magnitude.

You see a child is happy, who is chatty and gets along well with others but who can be very shy at times.

I see a child who knows that to stand out is a bad thing so she is compliant all day. I see a child who badly wants to fit in with others around her and yet she is unable to because she just does not understand the social interactions of others. I see a child who then struggles to keep it together all day that the minute she arrives home and walks through the front door, her pent up frustration and anger explodes. I see a child who knows that we are understanding and will remain calm so she feels safe to show this other side to us. I see a child who breaks down in tears because he knows that he is different and doesn't yet understand that different is good.

You see a child who is unable to focus on their work and is becoming disruptive as they move around the classroom or as they start to vibrate in their chair. You see a child is unwilling to do their school work unless they are removed from their classroom.

I see a child who is in sensory overload by their surroundings and is physically and mentally unable to focus until they have had a sensory break. I see a child who needs regular sensory breaks to assist them to focus. I see a child who is beginning to understand they need to have a sensory break but is not yet able to find the words to communicate his needs. I see a child who views being removed from their classroom as a punishment not as an opportunity to complete their school work.

You see a child who is rude or ignorant because they are refusing to speak or interact with those around them.

I see a child who is in sensory overload by all that is going on around them and the only way for them to cope is to shutdown and to retreat into their inner self.

You see a child who is a fussy eater and who you believe should be made to eat the food that is put in front of them.

I see a child with sensory processing difficulties. A child who has to wear the same clothes day in day out. Not for style, purely for comfort. I see a child whose skin feels as though it is literally crawling when particular textures are felt or eaten. A child who needs a lot of time and effort put in my others to try to increase the foods on their list of acceptable foods. I see a child who knows when we change a brand of food, they don't have to see the change in food label, they just know.

You see a child who is obsessed with a particular toy or subject and who you believe is spoilt as they seem to always have the latest toy, gadget or clothing item or costume.

I see a child who is in his comfort zone. A child who while wearing a superhero outfit is willing to venture out from his shell to interact with others. A child who is trying desperately to establish some common ground with others. A child who is willing to verbally communicate as he joins in on a conversation about his obsession.

You see a child having a tantrum.

I see a child who is in meltdown mode. A child who entered into sensory overload as a result of their surroundings. A child whose anxiety has become so crippling that the only way that they know how to cope is to let loose with screaming and yelling and throwing random objects. A child who desperately wants to escape their surroundings but they physically cannot find the words to voice their needs. I see a child who needs space and a parent who is calm with a seemingly unending patience level. I see a child who at that point in time is only able to communicate their needs through an angry outburst. I see a child who is not aware of their actions or words while they are in meltdown mode and yet is remorseful in the aftermath even though they have no recollection of the event.

What you are seeing is a mask, a front. 

Remember looks can be deceiving, not everything is as it seems to be.

The mask is the autism that you DON'T see.

Schedules, Consistency and Routine - the fun things in life!

I was asked about a week ago “how do you manage to get everything organized in the morning? How do you organize your time? I need some tips!”

Every family, every household, differs in some way in the same sense that every child diagnosed with Autism differs. No two are alike so the things that we do, may or may not work for your household. There are however certain aspects of Autism that are similar from individual to individual and some of the strategies that we use will benefit others.

There are some days when I am honestly not sure how we manage. These are the days when we are just winging it and hoping for the best. But there are strategies that we use subconsciously every day that help to make our days run smoother.

Most of the time, our days are structured to minimize the stress on our family but also to maximize our time to fit everything in. And there is a lot to do each week – not only is there our paid work commitments to consider but there are specialist appointments, therapy sessions, swimming lessons, day care and school and anything else that may crop up through the week.

I’m not saying that every day in superhero headquarters is regimented down to the last minute, but there is a little bit of structure throughout each day.

If there is one thing that we learnt very rapidly on this journey it was the importance of schedules, consistency and routine in the day to day happenings in our household. Both my little superheroes thrive on routine and consistency and they rapidly descend into meltdown mode if either of these is suddenly changed or is non-existent.

Both O and L need consistency and routine as they are what makes them feel safe. They may have had a rough day at school or day care but when they get home, they both know exactly how and why things are done. This helps to ground them. Routines and consistency brings back a sense of normality that they are familiar with. Chaos for anyone generally doesn’t have a calming effect, throw in Autism and chaos adds a whole new dimension of stress.

All I can suggest is that if you are after strategies, you might consider and modify some of our ideas so that they will work for you.

What do you mean by consistency?

Consistency could mean anything from the discipline methods used in your household to where you eat dinner every evening to how things are done around the house.  If things are not kept consistent, then your child may become confused. Their expectations of how things happen are suddenly changed and they may struggle to keep it all together.

L and O know that their school bags are kept in a corner in the dining room. L generally takes his green blanket to day care and school every day - god help us if anything ever happens to said green blanket as I wouldn’t have a clue where to get a replacement from – and once we have arrived home he will go looking for it when he needs to relax. If we constantly moved his school bag around, this would add to his stress. A simple act like having all the school bags in the same place, every day, reduces the stress. It also makes it easier in the mornings when we ask O and L to help get their school bags ready for the day.

Keeping all the shoes in the same place means that when L is asked to get his shoes, he knows where they are and can go and get them. It gives his self confidence a boost as he knows exactly where he needs to go.

It did take quite some time of me feeling like I was constantly banging my head against a wall, but eventually both my little superheroes understood where the school bags, lunch boxes, drink bottles, hats and other items went.

Most children can be taught how to organize, it may not be easy and might not happen at a fast pace, but if you persevere they will get there. If children can be taught good organizing habits, then it makes sense that calm should follow and that they’ll take these skills into adulthood.

I have heard of some families putting visual cues up around their house so that their children know where everything belongs. This could be a picture of a hat or a school bag or shoes. This will not only assist your child to learn where everything belongs but they are great therapy tools – remember, everything can be turned into a therapy game!!

The way that I look at it, if I can make a household chore into a therapy game, the sooner L will achieve his therapy goals. L loves to help with wiping the dishes. If I put the wet cup on the opposite side of the table to his free hand then he has to cross his midline to get the cup! If you put a picture of a hat where the hats belong, this will help with your child’s language skills.

If you struggle with consistency in your household, it is a good idea to sit down with all the adult members of the house and explain the benefits of consistency for your child. If you are all on the same page and the other adults understand the reasons behind the consistency, life is going to be much calmer for everyone.

Visual schedules

One of the things that L loves about going to Tara’s school, apart from seeing Tara, is his visual timetable. After he’s arrived at Tara’s school and has settled in, L will go to his visual schedule to find out what he is doing that afternoon. Daddy superhero thought that it was brilliant and set about to make our own visual schedule for home.

In the past we have tried printing off very simple visual schedules but they were never well received by L or O. So Daddy superhero got all the supplies that he needed, sat down with L and O, explained what he wanted to make and then started being creative. And wouldn’t you know it, both little superheroes wanted to help, they were their schedules after all. For their schedules we just used a piece of thick card, sticky backed Velcro dots and small wooden shapes.

Both O and L have a morning and an afternoon schedule that they can refer to at any point. Their schedules remind them of the steps that they have to do every day. The schedule reminds them of what they need to get ready for the day. I will always go along after to make sure they have remembered everything, but with the schedules, they can take some ownership and gain confidence in their own ability.

We have visual schedules of the items that L needs to have for rugby training and games. We have a visual schedule for L of the steps involved in putting on sunscreen. We used to have a visual schedule of the steps involved in going to the toilet. All of these are little reminders to L on how to do things so that he can learn for himself. They give him the confidence to be able to do things himself.

Visual schedules can be as simple or as complicated as you like, and there are plenty of free sites where you can obtain the visuals from to make your own schedules.

At the beginning of the last school year last, I typed up both O and L’s schedules for the week of what was happening each day at school, therapy or day care. This helped me to remember what was on each day and what each child needed to take with them each day. This was my reminder and it spent the whole year on the fridge for everyone to see.

It also meant that when I was booking in specialist, therapy, funding appointments that I could refer to my schedule to make sure that I wasn’t double booking ourselves.

Routines, routines, routines…..

If routines are kept the same, then they are the predictable calm part of your child’s day. O and L know that, generally, we are awake at the same time every week day morning – still trying to convince O that she really doesn’t need to be up at 6am on a weekend morning!

After they wake up, it is breakfast time, then they get dressed for the day and then they can play. Both little superheroes know that before they can go off and play, they need to do all their steps on their morning schedule.

L knows that Tuesday is my day off – not that it really is a day off – from work. Mummy’s day off to L means that it is shopping day and Tara’s School.

O has a set bed time routine that she developed herself – I know that if we deviate from that routine, bed time is a lot noisier and very drawn out. Even our drive to and from school is set, it is the quickest and easiest route to get there and hooley dooley look out if I go a different way, I can guarantee that there will be a little voice from the back seat saying “this the wrong way!”

I can’t encourage routines enough, it really is best to keep life as stable and routine as possible for a child or an adult with Autism. Even if it means that you need to write down a routine for yourself and put it on the fridge, set reminders and alarms on your phone, emails etc.

Saying that,there are going to be times when routines are going to have to be changed and children with Autism need to learn that life is not always going to happen in a certain way. Changing up routines every now and then is a good thing. You could make little subtle changes and then work your way up to large spontaneous changes. These will help your child to adapt to changes at school when they have no notice of a relief teacher for the day. Being comfortable with change will reduce the stress on them, internally they will know that even though they’ll feel anxious that they can get through it.

If I know that one of our routines is going to change, I do forewarn my little superheroes so that they are prepared. We learnt to do this the hard way! I also talk to both little superheroes on a regular basis about what we need to do or what is going to happen that day.

Appointments

Let’s face it, an integral part of being a special needs parent is the what seems to be the never ending specialist appointments. It honestly feels like we spend more time sitting in specialist offices than we do enjoying the company of our friends.

I’m very lucky in that I only work four days a week. As I mentioned earlier, Tuesday is my day off. This means that Tuesday is generally appointment day. I try to organize any appointments that we need to go to for a Tuesday morning. I do all my phone calls to funding bodies, case managers etc on a Tuesday afternoon when L is at therapy and before I pick up O from school.

Setting aide time to make phone calls means that I am not rushing around like a head less chook. I know that this time is generally free from distractions (namely O and L) and I can get everything organised.

If I’m unable to make appointments for a Tuesday, then I will always try to make the little superheroes appointments either early in the morning before school or after school. Morning appointments mean that the little superheroes are fresh from sleep and as such the appointments generally go well. Both O and L like going to school and really don’t like being pulled out of school early. O panics about school work that she might be missing so after school appointments reduce the stress on her.

When I’m making appointments I also try, where possible, to book follow up appointments, if they are needed, months in advance. At one point, I had four months worth of psychologist appointments booked for O. One of the great things about all our specialists is that they phone a week out from the appointment to remind us. I also write all our appointments on our calendar and put them in my phone. Can never have too many reminders!

Depending on which specialist we are going to, I try to prepare the little superheroes beforehand. I’ll talk to them about why we have to go and where we are going. L identifies specialist offices by their play areas and water dispensers – so I’ll remind him which one he’ll be going to.

When we go to appointments, we always take our bag of tricks – it has toys, games, books, colouring in books, paper, pencils, food, drink bottles and wipes in it as well as some sensory toys. We must look like were going for a week-long trip. All of these items assist my little superheroes to feel comfortable, they all assist to keep them calm. The office may be busy, but my little superheroes can retreat to their belongings that they know.

Meals

This is a big one is our house and it is usually the one that takes up the most time each day. At the start of the week I will ask O and L what they want for lunches each day at school. We are quite lucky in that both little superheroes have their standard fair that they eat at school each day. Wednesday is always tuck shop day at school for O, so that brings it down to four lunches.

Prior to doing the shopping I am one of these crazy people who do up a weekly menu. The menu has certainly saved us not only money but also time. Between the menu and knowing what the little superheroes want for lunch, I know exactly what I need to buy. If Daddy superhero is on dinner duty, he has a list of preplanned ideas to cook. This has definitely been a saving grace for us. It saves a lot of time when you know what is in the fridge or freezer.

One of the best and most used kitchen appliances that I have ever brought has been our slow cooker, in fact we have two of them. You can cook almost anything in a slow cooker – roasts, soups, curries, pasta, you name it there is probably a slow cooker recipe for it. It is great, I can put the slow cooker on in the morning and then when I get home, dinner is done. If we’re at appointments all day, the slow cooker means I don’t have to worry about dinner. If we’ve had a rough day with the little superheroes being in sensory overload, having dinner looked after is a huge relief.

I honestly use our slow cooker more often than I use the stove and oven!

Depending on what is on the menu, I always cook more than we need. The leftovers go into the deep freezer for those nights when we are just too tired to cook.

Always Be Prepared. Channel your inner Scout!

During the school week if I’m able to, I will get the little superheroes clothes for the next day ready the night before. The clothes are laid out where O and L can see them. This eliminates them having to decide what they want to wear the next day. With L, he likes to be in control, so I will always have a few choices for him to chose from. This makes him feel like he is in control but I get the outcome that I am after – L getting dressed. It also means that he can visibly see what he has to put on and he will rarely get “lost” while getting dressed.

It sounds rather silly but I also get my clothes for the next day ready the night before. It just makes the mornings run so much smoother. It is one less thing to organize.

If I’m starting early at work I will get school lunches ready so that in the morning I can just pack lunch boxes.

All of these strategies give us a few extra minutes in the morning to play with.

Make some friends.

Being on this Autism journey has made me feel much more comfortable talking to strangers. When you’re sitting in a waiting room watching your child wreck havoc, I mean play, talk to those around you. We have a group of friends that we met through our therapy appointments. Being on this Autism journey can be lonely at times and finding people who understand exactly what you are going through is important for your own sanity.

Reach out to other people who are on a similar journey, exchange stories, compare notes, have a circle of friends that when you are in a dark place, will understand and be a listening ear.

There are some great Facebook groups which are filled with supportive members. One group that I am part of is Autism Living Life onThe Spectrum. I can sound ideas off other members, ask for advice, have virtual coffee chats, share lows and most importantly share wins.

Tag, you’re it!

In superhero headquarters it really is a tag-team effort between myself and Daddy superhero. With L’s sleeping patterns, or lack thereof, we will take it turns to stay awake with L. Or we will tag out during the night if we need to sleep. Cooking is a tag-team effort. If one person did it all, they wouldn’t have any energy left. I really don’t know how single parents survive.

If you don’t have any support at home, perhaps you could rope in a trusted friend to help occasionally. It doesn't have to be every night, maybe once a week to help out, just to give you a night off. It could even be asking a friend to cook a meal for you once a week. I don’t like asking for help but I have swallowed my pride in the past and asked. I injured my neck and back a few years ago when Daddy superhero was away for work. Wanting to stretch my back, I laid on the tiled floor and then could not for the life of me get back up. O retrieved my phone and I phoned a friend, thanks Bec, who not only brought Maccas for dinner but also bathed the little superheroes, got them dressed and got them to bed.

If you need to ask for help it does not mean that you are weak, it means that you are strong as you have recognized that you can’t do it all.

So tag, you’re it!

Our Autism Bible

The next piece of advice that I am going to give, and this is one that if you don’t already have this system in place, it should be the only piece of advice that you take from this post.

At the beginning of our Autism journey, we were given we what we call our Autism Bible through the Autism Association. This is a three ring binder that is sectioned off with various headings. In this binder is everything and anything to do with L and his Autism diagnosis. The binder has L’s diagnosis notes, letters from specialists, his NDIS funding information, L’s medical information, copies of his IEP, basically anything that we might need to refer to when speaking to medical and therapy professionals. In the back of the folder are pages and pages of therapy information and other sheets to give to teachers and relatives. There is space to work out therapy expenses, card holders for all those business cards that you may acquire.

When we have appointments, this bible goes with us. I no longer have folders everywhere, I have one folder. All the information is kept in one easy place to find.

It makes perfect sense to keep all information in one place but it is not something that we thought of when going through the medical round-a-bout leading up to L’s diagnosis.

I’ve since added information that we received from his therapists at the early intervention centre and hospital records from when L had emergency dental surgery last year (that’s another story!) L’s immunization records are in the file.

It is definitely something that all families should have.

Lastly, have some me time!

At the end of each day, make sure that YOU sit down and relax even if it is only 5 or 10 minutes. Catch your breath, make a coffee if you need it, read a chapter in a book, watch some television. It is vital that you take the time to have some time for you.

What’s really important, a clean spotless house or keeping your sanity?

I’d love to have a spotless clean house but then I wouldn’t have time for me. Time for me to reclaim my identity. Time for me to do something that I like doing. Time for me to recharge.

I find that when I do get the chance to sit down and do nothing, I am a lot calmer afterwards. Calm is good remember!! Calm is what we all need to aim for. When we are calm, our children are calmer!

Self-care is super important and it doesn’t have to be completed. A day at the spa would be great, but realistically I know that isn’t going to happen every week. Self-care could be as simple as having a cup of coffee, reading a book, going for a walk with the family, spending some time out in the garden, watching a show on TV, something that helps you to relax.

You need to look after yourself before you can look after your family. If you are run down, you are not going to be of any use to your family.

So sit down, have a cuppa and breathe!