How To Overcome Carer Burn-Out When It Equals Sh#%

We all have our days. Those days when you’ve dealt with a few meltdowns, struggled to have your child follow a simple direction, been bitten, had your hair pulled and cleaned several accidents. I had one two days ago. I’m thinking to myself, one more thing I’m going to lose it, then Billy comes over to me and hands me a long solid log! Umm yep exactly, a solid number two is being handed to me with a smile. Of course I will turn into a raving lunatic, I deserve to go off the deep end, RIGHT?

Well I say no. No to going of the deep end….umm too often anyway. Why, because when I go off the deep end, I am in the red zone on the stress indicator. That is not good for me, my family or my goals.

So because I am important, to me anyway, getting the most of out my day is what I need to maintain my oomph.  Here are three of the many tools in my tool bank that help me feel happy.

1. Be Silly – I’m a silly Mumma. If you are wondering what that means, it is simply, me acting like the Mum in the Vita Wheat adverts (the mum jumps in a muddy puddle while the child stands there watching…remember?) My home is chaotic most days, so to fit in I will find the time to be a child and play silly games with the kiddies. The games are fairly simple so Billy can join in, but 10 minutes of hide and seek can give you quality time with the kids, laughter and maybe even complete joy if your child does something unexpected in the right direction.
2. Keep a memory book – Really a memory book is nothing more than a photo/scrap-book/journal of moments. We have our phones pretty much attached to our ears these days, so keep remembering to take snap-shots of moments. Whether good, bad or boring, you will look back at the memory book and feel happy and grateful for your beautiful family.
3. Go to a support group or online forum – They say a problem shared is a problem halved, but I say, listen to what others are dealing with and I guarantee you will take the other half of your problem back. We all get stuck in our own bubble and feel as though we have the most difficult life at times. That’s ok, just don’t get stuck there because your problems are only as big as your thoughts make them. There are many people dealing with worse and some of them still have massive smiles.

Try these tips out as I’m sure you will feel grateful and see how far your child has come. I have felt proud looking back at the snaps of where we once were. Oh and if you get the chance, take a picture of your child holding a solid log, at least you can show your other half as proof it happened!

 

I would love to hear how you get the most happiness out of your day, please leave any tips by leaving a comment below!

 

 

 

 

How to boost your happiness when you are a full-time carer!

I miss the me before I became a carer!

Sound familiar? Wow full-time caring can be tough. Physically demanding, emotional demanding, isolating and always about two gorgeous little people I love…..but, Ok I’m going to say it, I love them but I need a break from them every now and then. There I said it.

A break to switch off from the demands and responsibilities that come with being a full-time carer, mum, therapist, doctor, teacher and even when I am appointed the little sister when my daughter and I are playing. Some time to catch up with friends, dance the night away, have a few wines and just be me.

Unfortunately most of us, me included, don’t have the time or babysitters to be able to have regular breaks from caring. I learnt some time ago, instead of feeling frustrated and angry with situations I can not control, look for alternatives. Which is exactly what I did. How do you reconnect with yourself again when you care for others 24 hours a day 7 days a week? When can it be all about me for five minutes?

Then I wondered how I felt when I was just me. I felt confident, relaxed, important, liked, healthy, intelligent, beautiful, and refreshed. So it goes it’s not just me anymore and it’s not about just me anymore, but, it should be about me sometimes. I a full-time carer but when did that mean losing all those nice feelings. Ok I know, it’s not like we can spare one night a week or even a month to take time off from our responsibilities. However, there must be something we can do to reconnect with ourselves, after all we have needs too!

So I thought about it and come up with some strategies and what do you know, they worked. I felt like me again, everyday. I should point out these tips didn’t magically allow me to time travel for a night to dance the night away as myself at 25 years old. I’m not that young anymore and my life has changed. Honestly I wouldn’t want to be 25 years old again, I was all over the shop at that age. I just wanted to take off my carer/mum hat occasionally. Here are a few things I did:

• Get dressed nice every day.

I don’t mean dress in a ball gown and stilettos to take your child to therapy, but just find 10 extra minutes each morning to do your hair, or apply some make-up. It is so easy to get stuck in the “stay at home carer/mum” mindset of I am not going anywhere, seeing anyone or doing anything so I will just hang around in my p.js all day. What about seeing you. It is amazing how confident you can feel by just doing this simple exercise.

• Make a list of activities you enjoyed pre-babies

My list consisted of things like, catching up with friends, working, exercising, making plans to look forward to. Then I looked at my options. I don’t have easy access to a babysitter so I decided to think about what time I to myself and did one activity per month, during that time. Both my children are at school so I scheduled the time in and organised to meet up with friends for coffee. I didn’t think or talk about disabilities once.

• Find a hobby or find part-time work

Regardless of what it is, if you live and breathe the same thing day in and day that’s what you will be focussed on. Finding a hobby you really enjoy or a job that gives you some extra cash will give you something else to think about. You will have something else to talk about as well as something that is important and is all about you. You never know, you may become so good at whatever you’re doing, people start to see you as a leader/expert.

So there you have just some of the things I did to reconnect with me. The person underneath the mum/carer/teacher/doctor roles I play everyday. Don’t get me wrong, I love being all those things. I love being a mum to my two beautiful children most of all, but I am still a person with my own needs and I am important too.  I found these things helped me and I hope they can help you too.

Do you have any tips on how you stay connected with yourself? If so please let us know by commenting.

5 great websites for special needs parents!

When I began my new journey as a special needs Mum, I had no idea where to go to get support!

I clearly remember the feeling of isolation and confusion when my first child, Billy was born.  I was hearing medical terms I had never heard before, and wondered where to next.  Billy was born with several abnormalities.  I was looking forward to meeting my baby, but instead I met a number of Doctors who introduced me to medical terms.

Billy was almost five months old when I was able to take him home.  I felt nervous and alone.  It was impossible to know what the future held for Billy, in terms of development. As Billy grew, it was easy to see he was lagging behind other children his age.  I knew I needed support but it was difficult to know where to get it.

I found it extremely frustrating trying to find information and of the little I did find, most were unable to help as Billy did not fit their criteria.

Billy is almost ten years old now and I have spent many of those years researching and learning to not only help Billy but also help myself. The emotional impact of having a child with disabilities is huge!  You may experience grief, anger, guilt, resentment, isolation. You may lose friends, you may have relationship issues and the support that you do have may try to tell you they understand, but you know, it is impossible for anyone to understand unless they live with it themselves.  I’m sure there are many parents that suddenly find themselves in the world of special needs, who feel overwhelmed and confused. To make life a little easier I have put together this list of some great websites to help you find the right type of support.

• Parent to Parent

This is a fantastic site. It has lots of great information from other parents that have special needs children so the issues are real and the advice is relevant. Some of the content is targeted to families in Melbourne but that is no big deal as there are lots of great tips and resources that apply to anyone and it’s free to access!

 http://www.deakin.edu.au/dhs/parent_to_parent/

• Friendship Circe Blog

This site is run out of the US however the information is relevant globally.  They have loads of informative posts on the issues we aren’t told about, such as “Helping our children cope with haircuts” or “The 10 best special needs apps”. Lots of tips and reviews on all things special needs.

http://www.friendshipcircle.org/blog/

• Disability Online

Disability Online is Australia’s disability hub. It has so much great information on almost everything to do with services, events,recreational activities, news, and carers support.  Lots of great links to other disability organisations.

http://disabilityonline.org.au/

•  Sue Larkey

Sue Larkey is unashamedly passionate about her mission – to inspire parents and educators and teach them how to Make it a Success.  Sue Larkey is uniquely positioned within the education system having taught both as a primary school teacher and a special education teacher.  She has lots of fact sheets on autism and Aspergers along with workshop information, products, books, tip sheets and other resources.

http://www.suelarkey.com/

• e-Bility

Offers easy access to a wide range of information, resources, services and products of interest to people with disability, their families and carers, health professionals and service providers in the disability sector. Really easy to use with loads of information!

http://www.e-bility.com/

So there you have them, my top five websites for parents of children with special needs.  Hopefully this list will make things a little easier when you may well be on the back-end of meltdowns by your child or if you’re like me, meltdowns from yourself!

Do you know of any other great websites for special needs parents? If you do please share them with others by commenting on this post.

How to survive the special needs journey…and be happy!

When life gives you lemons, make lemonade!

What about when life gives you a special needs child? Not to mention all the other lemons that continue to come your way, because life goes on. Marriages break down, budgets may be tight, friendships still need nurturing and families, well they still remain crazy!

So how do we get through each day, and still remain happy?

Some of us may need more time. Time to be on auto pilot. I was on auto pilot for years. Just living each day doing what had to be done, feeling many different emotions but never really dealing with any of them. Almost giving in to “my life is going to be hard”.

Then one day, as I cried to myself because Billy and I had to leave yet another family gathering (Billy doesn’t do too well with crowds), I realised we hadn’t been singled out by the universe. We hadn’t done anything we were getting paid back. We had simply been given something that none of my family or friends had. However there were many people out there that had. I had actually been given a gift. A beautiful little boy who has so much to give back to me. How could I be unhappy with that?

Life isn’t meant to be easy, for anyone

Everyone person breathing has their fair share of life’s ups and downs. People die, hearts are broken, employment ends. We are all fighting our own battles. I knew it was time to completely accept that this was our life, and I could either love it or loathe it, but regardless I was going to have to live it. So I choose to live it happily.

So how do we build killer resilience?

•  Sometimes we have to let go of the life that we have planned in order to live the life that is waiting for us.

The first step is acceptance. Accepting isn’t easy. It can feel like you have been defeated. Like you are giving up on everything you had dreamt for. Instead of thinking about the dreams we are giving up, focus on creating new dreams. Remember that your dreams don’t always have to be about your child. You are still YOU as well as a special needs parent. How far you go depends on you!

•  It’s OK not to be OK. There are ups and downs, happiness and sorrows and that is life. 

Give yourself room to not be ok. I mean we are not rocks, we are human beings and we feel, think and love. It’s ok to have bad days. It’s ok to lose it every now and then. The key is to understand that’s what they are, they are just bad days not a bad life. We may have many bad days, which can make it hard to believe our live’s aren’t hard, but there are worse things that could happen, harder things to deal with. It’s all in the way you see it.

•  Once in a while, you have to close your eyes, breathe & remember that you have been though pain before. “What doesn’t kill you makes you stronger”

Be proud of yourself, you have been through some difficult times. You survived, you still laugh and love. Reflect each evening before you go to bed. Think about your day and what you got through, but don’t spend too much time reflecting on the difficult before you recognise the lessons. The lessons are what makes us who we are and that is something to be very proud of.

• Sometimes a break from your routine is the very thing you need

It is amazing the difference a break from your routine can make. Even if you only take a short time to have a coffee with a friend, or if you are like me a trip to the supermarket, alone, can be just as good (yep). For a long time, I made the mistake of still thinking and talking about “special needs” when I took a break. It is really important to remind yourself that are more than a carer or parent. That can be tough, as we have been going through some tough times and may be stuck, especially since we have been referred to as “so & so’s Mum” for so long…. I go to the hospital, specialists appointments etc and I am always Billy’s Mum. Does that happen to you? Think about YOU, what were you like before your child? What did you enjoy doing? If possible, get involved in an activity you enjoyed before your children. Doing this will reconnect you with interests that made you happy and were just for you!

• Set Goals

When I say set goals, I mean anything goes. Your goals can be about your career, family life or they can be as simple and fun as setting yourself a goal to visit a place with your children, with friends or even alone. It should be something that is important to you or exciting. Something you need to stay focused on to get, because it is so easy to get caught up in caring and cleaning, appointments etc and forget about our own needs. Goals are our road maps that show you what is possible for our life.

These are just a few tips to help you build resilience and building a great life. Accepting what we have, making the most out of every day and learning are what eventually makes us who we are. Throw in positive thoughts, goal setting and motivation and we will become exactly who we want to be!

11 things I do daily that remind me I am a special needs mum!

Parenting a child with special needs can feel like living in a bubble at times.

It’s actually really easy to forget your child is different to anyone else. That may sound unbelievable but it is true. You have developed a routine, not always by choice but what do you do, shit happens. Then you go along your merry way, living your merry way.

Recently I had a friend visit. This friend is not a close friend, and hasn’t really witnessed the way we live… It was that day, I realised there are many differences in parenting a special needs child. It must have been the way my friend ducked for cover as I leapt past her to investigate the brown smudge on the fit ball. Extra vigilance is required, along with extra time, extra interruptions and loads more to consider.

I sat down and thought about all those little things I do or need to consider because my child is Billy.

1. I vacuum and mop my floors every single night. Actually there are many days I do this throughout the day as well! If you have a child with Autism you may also have a child that is equal to a tornado. Billy is so very messy and if I fail to vacuum and mop, I will need to catch mice instead… Not an option, I don’t do mice!

2. I have about 3 secs to get Billy a drink. If I happen to be preoccupied, like using the bathroom, the jug of cordial is on the kitchen floor.

3. My house is equivalent to Fort Knox. Children with Autism wander, so when you visit please take note of the fire escape plan on my fridge as my doors are always key locked.

4. I am a master hider. Billy is completely obsessed with any device that begins with i, so hiding my iPhone and iPad is a must! If I don’t, it will cost me in data usage or repairs.

5. Always put your clothes away immediately after folding. Yep, I have learnt after spending hours folding the basket of clothes that has almost become another piece of furniture, to put them away or find them thrown across the room.

6. When invited somewhere, always have your own entertainment. It can be pretty boring in the room Billy has retreated to because he is uncomfortable with the environment, so I always have something to keep me entertained.

7. If you need your glasses to read something, hide! Billy has this obsession with glasses. If you get spotted wearing them, they are ripped from your face and thrown at least 5 metres.

8. If it’s brown, smell it. If you visit and you are mid conversation, please excuse me if I happen to leap through mid-air to investigate the brown smudges on my tiles, close to where Billy is, umm sitting.

9. Expect the unexpected. I have become an expert in investigating nudity. I apologise now to my daughters lovely friends who may have been taken back on the few occasions Billy was naked before I could intervene.

10. I have T.V time. I’m talking about myself here. Regardless of whether Billy is watching T.V or not, I am not allowed to touch the foxtel remote until he is in bed, ASLEEP!

11. Always look on the ground.We don’t have a 3 second rule. If it’s on the ground, and resembles anything editable, it’s in Billy’s sights. I need to be on top of this one, as I have discovered how much a Christmas Beetle looks like a chocolate chip.

Above all these things and more, there is one thing that I do which makes all the extra effort worth it. I feel like we have won a gold medal every time Billy does something new such as, making a different sound, letting me brush his hair or following a new instruction.

So yes I need to consider some things that may be different from a family without a special needs child, but I also get rewarded like a champion for it. How can that not be worth it?

Can you relate to any of these? Tell us what you do differently.

What parents of special needs children need to stop doing now!

Yes having a child with special needs has taught me a lot. Yes I appreciate the small things, blah blah blah

We have all said it. We have all felt it. I’m sure we have all thought the blah blah blah too.

Having a child with special needs is hard, not always, but at times the challenges are intense. I experienced that intensity today. It was “one of those days”.

My son, Billy has severe Autism. He doesn’t like crowds, noise or unfamiliar environments. He likes his own home, preferably with just the three of us, myself, my daughter and him. He likes to have control of all the technology, computers, foxtel and any device that starts with i.

The life he likes can be very lonely for my daughter and I. It can also be trying when we need to go to the supermarket or to drop my daughter off at dancing or a friend’s house and the list goes on. So on a day like this day, I have dealt with many meltdowns, just because we are living.

My frustration levels are high, my patience is wearing thin and to be totally honest…. I don’t really feel like putting on my happy, calm face anymore.

I let Billy watch T.V and play on his iPad, the way he wants to (YouTube), all afternoon. I will put him to bed tonight and sigh, as I say to myself, “finally it’s over for tonight”!

Then, once I sit down after I’ve made lunches, ironed uniforms, checked school notes, I beat myself up and feel completely guilty for everything negative I felt!

How bad of me to let him sit in front of the T.V, how bad of me to let him watch YouTube for 2 hours, and how bad of me to want bedtime to hurry up so I don’t have to deal with autism again tonight.

STOP! Stop feeling guilty!

I remember, I am a human being. I have needs, wants and interests. All of which hardly ever get met.

It pays to remind yourself that you are human. You spend your time caring for others and providing support to another person every day. You deserve nourishment and care. You also deserve to have your needs, your wants and your desires all met. You are not super carer and you are not selfish for feeling like you’ve had enough some days. YOU ARE ONLY HUMAN.

Tomorrow you will wake up and be calm, stable and ready to do it all over again. Some days will be easier than others. That’s ok and you are doing the very best you can for the child who you love with your whole heart.

Forgive yourself often, it’s the key to survival.

STOP THE GUILT! 

Do you also have “beat yourself up” moments? Let us know by leaving a comment.

3 Things you can do today to create the life you dream of!

Have you ever had one of those moments when you look at your life and wonder what happened? Is this it?

I have but lets just say they were not moments, they were more like hours, EVERYDAY.

Before I become a Mummy, I was a high-flying corporate executive with big plans for my future. I was earning great money, had travelled the world, invested in property and was a social butterfly.  Loving life.  Even more so when I met the man who was to become my children’s father and sooner than expected fell pregnant with our first child, our son Billy.

Billy was born with disabilities, a life threatening medical condition and years later was diagnosed with Autism.  Those first few years were tough.  Here’s us, a young couple, at the beginning of their lives together and dealing with medical terms we struggled to spell, let alone understand.

We also had a beautiful daughter, Sienna who came along when Billy was 20 months old.  Sienna was a breath of fresh air and brought some normality back into our lives.  We were coping, not always well, but coping.  I was extremely busy with therapy, hospital stays, doctor appointments as well as juggling the demands of a mum, wife and friend.

Raising a child with special needs is tough. There isn’t a lot of time or energy left for each other. That is common to any parents however there are extra challenges when you have a special needs child. When Billy was 6 years old, unfortunately our relationship broke down.

Gee and I thought things were tough before!

I knew I needed a bit of help to get through it all. Nervously I took myself off to the doc’s and started some counselling sessions.

The strategies I learnt work!

It takes time and more importantly, it takes commitment and determination to get better. It also takes memory, which isn’t my strongest point haha, so I choose 3 easy yet very effective exercises that WILL help, to share with you.

• Retrain your Brain! Our brains contain neutral pathways. Basically we can train our brains to change our thought patterns. I will explain. I am very busy, but I still had way to much time to think. This is because I am busy alone. So I had to learn to recognise my thoughts, be aware of the negative ones and change them. I did this by focusing on the task I was doing. If I was washing the dishes and I recognised a negative thought, I turned my attention to the water temperature, the bubbles, anything that related to the washing up. It took time, lots actually and I still do this exercise today, but it gets easier and suddenly you realise how positive you feel.

• You Time! You are very important. You have needs, wants and desires. It is important you take the time to invest in yourself, doing something you want to do. Set aside at least half an hour per day for you. The length of time can be whatever you decide you can manage in your caring role.  During that time, do an activity you love.  It can simply be reading or taking a bubble bath, going for a walk or visiting friends.  Don’t forget to train your brain during your time.

• Snapshot your life! It is important to reflect on what we have been through and be proud of ourselves. It’s amazing how much more of an impact it will have when it’s shown visually. Carers are strong, we have been though a lot. All you need to do is take a piece of cardboard, cut-out pics from magazines, or online and paste them on to the cardboard to represent significant events.  Also think about where you dream to be in 10yrs and do the same pasting pics on your cardboard. Keep this piece of cardboard somewhere you can see it everyday. It serves as a reminder of your strength and dreams.

These exercises take time and some days you will do them all day, other days not so often. Go at your own pace.  I still do them! But it was up to me to make a choice. Did I want to be happy or did I want to be sad and angry? I chose happiness and doing these exercises has given me a steps towards self-worth, determination and hope to reach my dreams.

I hope it does for you too!

Do you have any others to add? let us know by commenting!

What every special needs parent wishes you knew!

How many times have you heard a special needs parent say the next line?

“My family & friends just don’t understand.”

I have said it, plenty of times. Have you? I also question it over and over again.  I ask myself “well how could they understand completely?”

Did you understand like you do now you are living it?

How often do special needs parents pour their hearts out to their family and friends? Maybe we find it easier to assume they know, or maybe we want them to think we always have it together. We may cope nicely every day, but that doesn’t mean our children no longer have special needs, so there are some feelings that will stick with us forever.

• The pain we felt when we were told the diagnosis, will never go away. We have accepted the diagnosis. We love our children, we accept their differences and we celebrate them. However, we will always grieve for the hopes and dreams we had for our children. For some of us, our children may never experience the many wonderful things in life, such as marriage, children of their own, and a great career. We  “But I thought you were in a good place now”, remember life does go on but scars remain forever.

• A part of us feels excluded from our closest family and friends. Please don’t assume that is because of something they are doing. It’s not our families or our actions that are causing this. It is simply because our live’s have changed and are completely different to the people we want to be around. As our friends children grow up, their opinion of a good outing becomes very different to ours. A friend’s twelve-year-old son will not be willing to spend the day at the play-centre because our child still loves it. Slowly get together’s become few and far between.

• We know what is best for our children and that doesn’t mean we are alienating ourselves from the world.  Many special needs parent’s will hear this from a close friend or sibling. Our best friends have said “we invite you and you don’t attend”, yes,  because we know our children and we have more than likely already been through the meltdown that will occur. It would be better if our friends could visit us at home, where our children are most comfortable and we will actually be able to sit down and enjoy each others company.

• The hole in our heart will never close. We will always have sadness and worries that our friends and even family will never understand. Don’t take that the wrong way, we don’t feel sorry for ourselves or blame anyone for that. The only thing we expect is support from our circle’s. If we are worried about dying, we need our friends to listen rather than question why we are thinking negative thoughts, if we feel sad because our children have never been invited to a birthday party we need empathy rather than our friends listing all the family members that have invited us, if we need to leave early or arrive late, we need patience rather than resentment. and if we need to spend a day crying around the house, we need you to know that it does not mean we are not coping but simply that we may have dealt with several meltdowns, negative comments from strangers and potentially many other situations that day.

As much as our family and friends try to understand the special needs parent, it is impossible, as to truly understand something means having an experience in it . We special needs parents, don’t expect that understanding and do not hold any resentment because of it. However if friends can try to support our decisions and listen to us when we talk about how we are feeling, we would have all the understanding we need.

 

Do you have any points to add? Let us know what you would like from your family & closest friends.

4 Little known tips about taking your special needs child to a play centre

What’s noisy, confronting and sometimes… umm… not fun at all?

The dreaded play centre! There I said it.

If you have a child with special needs, no doubt you’ll know what I mean. But guess what?  I’ve discovered something that every parent with a special needs child, needs to know about preparing for a trip to the play centre.

The last time I decided to put on my “I have it all together face”, I decided to show it off at a play centre. Needless to say, I left feeling a bit sad and stressed.

It wasn’t because I asked for a cappuccino and got a flat white. No it was because of a number of, “out of my comfort zone” situations, that comes with being the mother of special needs five-year old boy.

The comfort I’m talking about is the zone where Mum sits down and chats with other mums over a flat white, cappuccino, tea or whatever, while the kiddies are off having a ball (or throwing the balls!)

What I have learnt, is that it CAN be enjoyable. Using tips from other carers and knowing what to expect, and most importantly, which play centres are most appropriate for my special needs child, can make the difference.

For example, only a couple of “oh my” *palm to forehead* moments – like knowing the whole play centre is watching “that adult” climbing the slide with their daggy undies completely exposed!

Oh and the one where you are running around after your child as he/she is cleaning the other tables, by swiping others chips. Maybe your child also sits right in the walkway at the entrance, stimming and making unusual noises so every child that comes in stops to stare and every parent asks, “is he ok??”

If it’s not that then maybe it’s the full-blown meltdown, either your child with special needs has, or your other child because you find yourself having to leave five minutes after arriving. Please tell me I’m not the only one?!

A play centre that accommodates, understands and treats me and my kiddies like everyone else despite my bent antennas, big red ballroom gown with purple daggys over the top, and one eyeball (yes I feel like an alien at times), can be a positive experience. It would probably be better to call first, and ask questions such as:

• What is their quietest day?

• Do they have a policy that will refund your money if you are only there for 5 minutes?

• Do they have an understanding for your child’s lack of cooperation for leaving socks on?

• Do they have an unused room on the day you plan to visit, which may help you to calm your child rather than leave and have your other child miss out?

Asking these simple questions can mean the difference between a visit to a play centre being a disaster or completely amazing!

And it’s totally worth it because it just may be the place where you witness one of those small steps for child, huge steps for our child kind. In other words one little thing that fills your heart with love and total bliss, the first independent ride down the slide, the first attempt to climb the fort, or something I have witnessed – the absolute joy on Billy’s face because for once he is part of the fun.

For that smile, I would be a daggy undie wearing alien everyday of my life.