Don’t Judge Me! Why Special Needs Parents Need To Take Their Own Advice!

We have all seen the lovely quotes on social media, “Don’t judge anyone else f40b6aa069e0a4d93d7fa67356a51361eor everyone is fighting their own battles”, you’ve seen them right?

I have actually posted one of these quotes and have totally believed in it. I have been judged on the way I have dealt with situations, the way I have coped with what life has thrown at me or even the decisions I have made relating to Billy. None of these things affected anyone other than myself and Billy (mostly) however I was still judged which left me with a huge sense of self-doubt and guilt. Not very nice.

I will admit I have also judged in the past. When I was in the first couple of years of caring for Billy, I  overheard a conversation two special needs parents were having. They were talking about their own children and the little amount of therapy based activities they did at home. One mother said “I let my child watch TV whenever he wants, as his home is where he should feel happiest.” I immediately judged. It may have been, because it was the beginning of my journey and there was lots of therapy to teach Billy, new skills, I was right amongst it.

It wasn’t until a year or so later, I thought of those mothers again. I had been beating my head against a brick wall trying to get Billy to do craft activities or pretend play when all Billy wanted to do was sort the pegs in to colour coded groups. I realised Billy was an individual, he would learn his way not the way I wanted him to. We all learn easier if we are doing something we love.

A few days ago I witnessed another special needs judgement. I was reading a post on social media. It was on a “support group” for parents who have children with Autism. It made me sad as it was from a mother in the U.S who had just made the decision to have her child put into care. She signed it “devil women” and throughout the post expressed her guilt and almost begged for reassurance she had made the right decision. Her child was very violent and was reaching puberty which was also proving to be a problem as she had three other children who were girls. The care was not permanent rather a three-month trial and she even posted a letter she received from her child in which he told her how much he loved her and how she was a great mum. All the comments the post received were positive and encouraging, except for one.

One is all that is needed for a person who is already heartbroken and struggling with how guilty they feel. One is all that is needed for a person who is almost begging for someone to tell them it is going to be ok, to just give up. One is all that is needed to affect your mental health which could impact negatively on your life.

I have made a conscious effort not to judge others. I’m sure I have and will again, I think it’s human nature, although I will make a bigger effort to always keep my opinions  to myself when I don’t agree. If I am asked for an opinion, I will always make an effort to remember that we are all different, we have different challenges, we have different families, and we all have different levels at which we can cope.

I will continue to post quotes on judging others, not because I never judge but to remind all of us that a little bit of thought and compassion is always needed before we use our mouths to give our opinions.

Have you been judged before or have you judged others and later found yourself in the same position? Leave a comment and give your insights below.

This isn’t the life I had planned! What to do first when life throws you lemons!

Whatimg053 - Copy happened to my bliss? My plan was like everyone else’s. I followed the same path. Then I had a child with special needs. My plans were destroyed. I had to let go of what I dreamt of. I had to let go of the future I had instilled in me since childhood and I had to believe I could be happy in a future completely foreign to me.

Not to mention, children are one part of your life. We all have other dreams and goals. So what happens when you get hit in the head with another lemon? After meeting Billy for the first time, after crying what I thought was all the tears I had, I remember clearly saying to myself, “it’s going to be ok, life is still going to be perfect”.

I lived believing everything was “normal” for a long time. I was on auto-pilot, waking up each day and living like many other people, except I had a special needs child. Trouble is, eventually I needed to take control of where I was headed. It happened to coincide with Billy starting “big school”. Before that I was protected by my “normal circle” of family and friends. Then I started to feel very alone in my foreign world. The stress and pressure of having a child with special needs can put a lot of strain on a marriage. Feeling alone on top of all that was the icing on the cake and unfortunately my relationship broke down. There goes another dream.

I was totally devastated by the way my life had turned out. Everything I ever dreamt and wanted had been taken away from me. I felt scared, emotionally drained and mostly ripped off. I had nothing but a bleak picture of my future and I felt like giving up.

They say you need to see darkness before you can see the stars. Well, how true. I was at the bottom and the only way was up. So, as I went through the grieving process for the life I had planned, I decided to reflect and reconnect with the new me. What did I want? What was I capable of? What was I hoping to achieve in life? Like most people, I want happiness. I want to guide my children with good morals and beliefs. I want to empower them to become caring, strong people who will always survive and inspire. I knew I would only be able to achieve this if I believed it and practised it.

So it was time for me to take a good hard look at myself. I needed to reconnect with me, as confronting as that may be. I started with a simple plan which was simply being “in the moment”, well every moment. Some of the things I became aware of were:

  • My reaction (thoughts) to good/bad stories
  • My defence. Living in the moment untapped a hidden pattern, poor me, the world owe’s me.
  • My thoughts. It seemed although I was busy I had way too much time on my hands to think negative stuff!
  • My drive to try. Looking back I hardly remember me as a person who would rather do nothing than try, due to my fears.

I kept track of all this by using a simple journal app. You can do it however you like however I recommend it’s always accessible as you may find yourself becoming so aware you are jotting things down every 15 minutes or so (I did).

This exercise was the foundation I needed to get back on track. I knew how I wanted to live my life and my ultimate goal was to be happy. This helped me understand that my happiness wasn’t dependant on, having what I wanted but rather what I did with what I have. It is important for all of us to understand who we are, what we want and what we could be doing to get where we need to be. That means the buck stops with each of us first. After that we can start to plan and practise. Even if nothing changes for a while, you will feel happier!

Have you ever felt like giving up? Let me know by leaving a comment.

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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 o10153018_868593926500666_9200869889764543477_nften 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!

 

 

 

 

Special Needs Parenting Can Be A Lonely Life

There is nothing like a special occasion such as Easter to remind you how lonely special needs parenting can be.

Easter this year was no different to other speimagecial occasions. My extended family gathered together at one chosen family member’s home, and we spent the day having lunch and enjoying each other’s company. That’s what these occasions are all about, family. What about when you have a special needs child? What about when this child is uncomfortable with crowds and noise and retreats to a room or wants to go home to get back to the safe zone?

This is how I spend these occasions. Every single one of them. I’m not mad, I don’t feel sorry for myself and I am not concerned with what I am missing out on. However, I didn’t always feel that way and I still don’t always feel that way.

Once upon a time, I did feel sorry for me.  I felt angry because I was the one that always had to miss out. I felt lonely because I knew it was impossible for my family to understand how I felt in that room. I wondered why I was there. I wondered if anyone was asking about me. I wondered if anyone felt interested in talking to me. I felt totally ripped off and totally alone.

Then as Billy started to get older, I realised that I hadn’t been ripped off at all. I had experienced all those things and still do. Mostly I realised it was Billy who should have the self-pity. It was Billy that should have held the anger. Billy has never had a conversation with another child. He has never played a ball game with another child. He has never had another child as a friend that looks for him to come and play. Yet Billy was happy to just be there with me.

Billy and I sat in a room together over Easter, and his constant smile and laughter reminded me that I am not alone on these days. I have my Billyboy. He makes me smile, laugh, and mostly he shows me I am loved and completely needed. He also helps me to see the beauty in the small things and how at the end of your life, these are the times that will be cherished. If I am included in these moments with Billy, what more could I ask for?

How do you cope with these occasions? Let me know by leaving a comment.

Why Special Needs Parents Need To Be Selfish Occasionally

427599_10150619503723514_1620110218_nMy kiddies spent the night at their dad’s place. Isn’t it funny how you long for a break, then when you get one, you feel completely lost and unable to stop wondering about what they are doing. I decided last night to catch up with friends for a couple of hours. It was so good. I felt happy and dare I say it, I felt free. Not completely free but free from responsibility, special needs and all the chaos of just having kids to look after.  I didn’t discuss special needs, kids or the chaos with any of my friends, we just talked about us. It felt great!

After I got home, I thought I would take the opportunity to tidy up, watch some T.V and have an early night. As I was cleaning, I realised I was thinking about all my responsibility and everything that needed to be done. So I stopped and put on some music and danced alone in my living room with the biggest smile on my face. If you are thinking “hmm she may be a little coo coo”, you are right. I may just be, but in our home that behaviour is tame.

So eventually I made my way to bed, and fell asleep. I woke up at 2pm today! Yep 2pm. That is something I haven’t done since before kids, and when I had a big night out as an excuse. When I woke up the first thing I did was mentally beat myself up. “what about the rest of the cleaning”? Then I stopped myself and thought “what about me”?

Yesterday was one of those days. Billy absolutely drove me insane. From the moment he woke up he whined. I made so many attempts to find out what he needed, but it just so happened he was also completely in his own world and I couldn’t reach him. Billy is non verbal, but he does make different sounds. Some are beautiful to the ears and some, like the one he constantly did yesterday, are extremely annoying. I couldn’t do anything to fix it or help him, so I endured hours and hours of a whining howling sound. I became so frustrated that at one point I walked over to him and grabbed his arm, with full intention of pinching him. Yep I wanted to pinch him. Instead as I loosely held his arm, I gritted my teeth and tensed up, and ended up hurting myself, like the big mean mummy I am.

I didn’t stop, he kept going, apparently until he got to his dad’s place. Why do things like that always happen. The kids can be naughty all day but the minute they are with others they are like angels.

Anyway I remembered my day yesterday, when I woke up at 2pm and realised I should be very thankful to myself for allowing me to catch up on some sleep, feel refreshed and excited to see the kiddies in a couple of hours. After all if I didn’t feel so good, I may just have no teeth left by tomorrow!

Parenting let alone special needs parenting can be hard. To be your best for your kiddies, it is important to look after yourself. The occasional sleep in til 2pm, or going for a walk, spending an hour away from the home or even just having a friend visit, are things you can do to let go of the bad days, frustration or worry and get back to feeling fresh and being the best you can for you are your family.

 

Have you ever felt guilty about doing something just for you? If so, share your story with me in the comments section below.

 

 

Is there a great divide happening amongst special needs parents?

I have a special needs child and I wouldn’t change it for the world

or

i have a special needs child and it’s hard work, If I could I would change it! 

I’ve been looking around on social media lately at blogs, interesting tweeters and pretty much anything that has to do with special needs, I have to say… I’m pretty shocked. I don’t know about you but I’ve noticed there seems to be a divide amongst us.

I mean a real, “I’m going to give you my opinion” divide! If the first statement above rings true to you, be aware of the carers in the second statement. They have a point to prove and it’s basically going to prove you are full of crap. How could you say you wouldn’t change your child’s special needs, if you actually had the power to? If you are the second statement type of person, don’t worry you’re not safe, the happy police are on their way!

In preparation for a potential comment war next time I posted on Facebook or Twitter, I decided to think about which statement rings true for me and why. There I was with my pen, and a piece of blank paper…..which is still blank today. I will tell you why

I thought of 5 years ago. It was the year before Billy was to start school and I was on a mission to find the right school for Billy, the one that would skyrocket him into “mainstream”. Billy had just been diagnosed with Autism and although I welcomed the diagnosis as it gave me something to go off, I also struggled with some of the behaviours that came with it. Then early morning on a Monday in May, Billy became ill. So ill I took him to the Children’s Hospital to have him examined. He was showing gastro like symptoms but because he has hydrocephalus and a shunt I thought I should take him. We had never had an issue with his shunt so I wasn’t sure what to expect, however I was reassured by the Doctor after the scans were clear. Two days later I was back at the hospital. Thank goodness I made the decision to go back, because it was that day Billy’s heart stopped. As the Doctors shocked Billy back to life, everything I had been feeling about autism left me and I felt totally blessed.

Although I still feel lucky to have Billy with me, would I call it blessed? I mean we now know Billy will not show the regular symptoms of a blocked shunt. It won’t be detected from a CT scan, only by inserting a needle into his brain to measure the amount of fluid. I also have to keep in mind, a blocked shunt for Billy will be fatal if he is not receiving medical attention within approximately ninety minutes. Blessed pfft, it is torture!

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So my blank piece of paper represents how I feel about having a child with special needs and complex medical issues. Here is my message to the divided parents, the parents struggling with the why me’s and the new parents who may feel totally overwhelmed.

Shit happens. This is life. No human being goes through life without feeling heartbroken, grief, fearful or angry, the list goes on. Yeah sure some of us may be handed a bit more shit than others (literally) but if you happen to be the one wiping the poo that is smeared all over the floor, remember you have a choice. You can be bitter and miserable or you can focus on the great things and be happy and loving.

My life isn’t easy. It is demanding, never about me, scary at times and very restricting. I close the fridge door on average, every 6 minutes (I’ve counted). I clean poo every 2 days from somewhere it shouldn’t be. I wake up at least twice a week at 3am and don’t go back to sleep until the following night. But seeing it is mine, I choose to be happy and enjoy all the great little things that happen in my family many times a day. It is truly amazing how much you will laugh when you start to look for the good instead of the bad. Since my beautiful boy does have these medical issues, I am so blessed to have my eyes wide open because I am enjoying him and that is the BIGGEST BLESSING of all

How do you feel about parenting your special needs child, blessed or wishing for a different life? Let us know in the comments.

5 great websites for special needs parents!

ImageWhen 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.

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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!

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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.