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.

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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.

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

imageI 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.

Why the passing of a T.V personailty and an inspiring little boy on the weekend has stirred my emotions

Last Saturday, a gorgeous and vibrant woman took her own life after a long battle with depression and on that same day in Western Sydney some 70km’s away, an inspiring little boy, who touched the hearts of so many also passed away.

fear

Two lives cut short on the same day, two lives that couldn’t be more opposite. One a T.V personality, outspoken, a model and a regular on Sydney’s social scene and the other a gorgeous little boy, brave, courageous, inspiring and severely disabled after a near fatal drowning six years ago.

So why are these two ‘tragedy’s so connected for me?

Fear!

Why? Well because I live a life that could be turned upside down by either one of these situations at anytime.

Overcoming my fear is something I have been working on for the past 10 years. My fears became so strong they may have controlled me. It all came about when my first child Billy was born with several abnormalities but no diagnosis or prognosis. Billy’s disabilities did not come under a syndrome but were individual issues that just happened. I knew we had almost lost Billy during his birth, and for those first five months of his life, I spent my time caring for Billy in the Newborn Intensive Care Unit at the Children’s Hospital, and cried all the time, fearful I would be planning his funeral in the near future.

Once I took Billy home, we settled in to daily life which consisted of doctors appointments, therapy, hospital stays and overwhelm

ing fear of the future. Thoughts of losing Billy started to fade and new fears crept in. Would he walk, talk, have friends, go to a mainstream school? It was totally consuming me and I was so sad.

Then in 2010, the year before Billy was due to start at a special school, the universe changed me forever. It was a Monday in May when Billy woke around 2am and started vomiting. As the day went on, Billy seemed to get worse and wouldn’t drink or eat. That night I took him to the Children’s Hospital on my gut instinct that something just wasn’t right. The hospital examined Billy and assured me the symptoms he was showing and the scans that were done cleared him of any cause for concern relating to the shunt in his brain to drain fluid. We were sent home, however two days later I was back as my baby boy was still very sick. We were admitted for dehydration, thank god because the next day as I held Billy in the ward, his heart stopped. The next five minutes were surreal. I stood in complete shock as doctors used a defibrillator and brought my boy back to life.

We soon found out Billy’s hydrocephalus could be fatal within approximately two hours and would not show any of the usual symp

toms. I felt powerless and oh so responsible to be able to see the invisible. I feared I would miss something. Billy’s shunt did block three more times that year and I picked up on it very quickly, but the fear still lingered.

It was a year or so after those events that my relationship with Billy’s dad broke down. So I found myself alone, worried and

I learnt some great strategies during that time.  Strategies to cope with life and all those unplanned life changing things that get thrown in. I learnt how our thoughts can send us spiralling into a dark lonely place and how to push away the negative and focus only on positive thoughts.  I wrote about some of these strategies in a previous post you can find here http://wp.me/p3Q0lb-47 responsible for everything. I started to feel low and eventually recognised I needed some help. I took myself to the doctors and he diagnosed depression. We talked about the treatment options and as I’m one of those worried people who will read every side effect of Panadol, I decided counseling was the best option.

Last weekend I had to revisit all those strategies again. When I heard the news, I felt the fear creeping in. I am living with what each of these beautiful souls eventually succumbed to, every day. This is why it is important to remind myself I am human, and I will have my moments.

However….. those moments may happen and in order to be happy it is best to fear them when they actually do happen!