The Best Present for Kids is not what you are thinking!

Do you remember what you were given for Birthday when you were nine, ten,  in your teens or twenties?  I don’t.  Do your children remember their Birthday gifts from last year or the year before?  The presents they just had to have! The Best Present that Everyone had.

If they don’t remember, if a few years later those gifts were insignificant, why do we rush to the shops and spend a fortune on presents that will be unwrapped, discarded and forgotten a month later.  This year before you do this, before you buy every toy on their Christmas or Birthday wish list, the video game, the merchandise from the latest movie, the cards from the current fad.  Consider that the best present for kids is one that will have meaning, consider a gift that may not cost much, will be fun and will last a lifetime.

What Do I give my Kids?

Over the last few years, instead of buying presents, I give my children a gift of time.  Time with me.  I give them a day of my life, a day of fun, by themselves to do whatever it is they are passionate about.  A gift of experience, time and memories. This is actually harder than buying a present from a shop yet much more rewarding.  This gift requires organisation and logistics.  It means friends or babysitters taking the siblings.  It requires putting myself out and perhaps doing something I don’t really want to.  It may mean driving a long way to fulfill their dream.  However, the joy and fun of that day stays with all of us forever.  My children still talk about their Christmas “day” present years later, because it is something special and meaningful for them.  It is something they choose, plan and look forward to.  It is time with their Mum doing whatever it is they really want to do.

What Really is the Best Present for Kids

These special days are the best in our year and often doing activities I otherwise would never have experienced.  I have had the priviledge of riding horses with my daughter, attending a Big Bash Cricket game with my son (believe me I dreaded it, yet ended up having a fantastic night.)  I have swung through trees,  slid down sand dunes, attended a musical, had a pink pajama sleepover – midnight feast and all.  I am sure this year will involve days of cricket, laser tag and horse riding. What they perceive as a gift for them, is actually also a gift for me.  It has enabled me to become closer to my children and to experience and share with them the things they are most passionate about.

My second gift to them at Christmas again doesn’t come from a shop, yet is their favourite present to unwrap.  It is a photo book of their year gone by (usually highlighted by their fun Christmas day present).  It is their individual memories.  It takes me time.  I collaborate all the pictures of their year, their special moments and experiences and have them bound into a book. Whilst again, this is harder than paying for a toy, the reward is also greater.  Throughout the year I find my children looking at them, showing their friends and talking about the adventures they have had, the highlights of their lives. Unlike toys, they won’t grow out of them, they will keep these books forever.

My children don’t have the latest Pokemon game, play station or Wii games, however they do have fun and memories.  Whilst your children may think the best present for them is the latest gift, perhaps it is because they don’t know what they could receive.  The thing that is most precious to them – a little bit of you.

Time is short.  Time is precious.  Instead of buying expensive birthday or Christmas gifts this year that will be discarded and forgotten, give your children the greatest gift of all, the very best present for kids – give them memories, give them time.  Give them you.

Recently, speaking at a function, I was introduced as “This is Sophie, she is a carer to  (and they said my oldest sons name). Well, that is odd, I thought, considering I have three children, two with diagnosed disability.

Does that mean I am mother to two and carer to one?

Or am I mother to one and carer to two (as one is very high functioning)?

Now I am confused by the introduction.

You see, I am not a carer.  I don’t want to be a carer.  I never wanted to be a carer and I don’t plan on starting now.  Yet, people often refer to me as a carer and I find it bizarre. 

I have three children and I consider myself to just be their Mum. 

 

I stood up and said actually, I am not a carer.  I am a mother to three children all with a variety of needs.  Actually, first and foremost I am me.  I am myself –  I am also a friend, daughter, sister, lover, blogger, taxi driver, cleaner, cook, wanna be surfer, motorbike rider, traveller, movie goer, beach lover and the list goes on.  No where would I define myself as a carer. 

It isn’t that I don’t care.  I do.  I care for my children, I care for my mother, I care for my cat, sometimes I even care for my pot plant (though I think it is dead, so perhaps that is not a good example.) Carer is not my title though. Caring is just who I am, part of my personality.

The term “carer” is very confusing.  The government refers to us as carers, if we receive a carers payment or carers allowance. Respite workers and council workers are often referred to as carers.  They are paid to care.  They come to your house or assist for a few hours and provide “care” work.  When they leave their responsibilities are finished. They no longer have to ‘care” until their next shift.  They have holidays, they have sick leave.  They can only perform certain duties due to work health and safety requirements.   It is a job they choose to do.  They can quit this job if they have had enough.  

Yet, this same term is used for a family member who cares for someone who has a disability or is aged.  The family member has none of the benefits of workers who are carers, they are not paid, they can not leave, there is no holidays, there is no sick leave.  They do everything they need to regardless of their own health or safety.  It is not a job, it is their life. They did not choose it and they can not quit it.  It is their loved one, often it is their child.  So there is a difference.  I am not a carer to any of my children, I just care for them. They all have different needs and I try my best to meet them, like any mother of children. The biggest difference is I do everything because I love them. 

One of the things that used to concern me, was my children would say in public, this is my carer (not about me but about their paid carers.). Or “my carer is picking me up”.  Using this terminology instantly made them different to other kids around them.  Other children at school didn’t have carers.  It identified our family as different.  So I decided to ask them to stop using the term and the difficulty rose about how should we refer to them.  Other families had babysitters.  This didn’t work for us as my very literal children thought it meant someone was coming to sit on our baby, which as you can imagine was particularly distressing for them!  (Got to love autism!). Whilst we were friends with our carers, we didn’t want to use the word friend as they were paid and sometimes they would leave us and we would not see them again.  This did not teach the lessons I wanted my children to learn about friendship.  So eventually, we worked it out.  We just use their name.  Simple.  So we cut the word carer from our vocabulary.  They were not carers, they were just people, there to help. They were just who they were. 

Just like people/society label our children, they also label us.  I don’t want to be a label.  I don’t want to be a carer.  I want to be Me.

So despite the government referring to me as a carer, despite society classifying me as a carer.  I know I am not a carer. I am a Mum …. who cares.  A Mum, just like I dreamed of, just like I planned, just like every other Mum.

Do you think of yourself as a carer or a Mum?

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Is your identity wrapped up in being a mother to a child with a disability?

Have you lost who you are?

If you are not sure, then maybe ask yourself a few questions:
When was your last conversation that did not include your children?
When was your last conversation that did not include disability?
When was the last time you went out without your children, or had a night away?
When was the last time you did something fun just for you?
When you introduce yourself, do you say your a Mom, or a Mom with a child with a disability?
Do you still have hobbies, interests, passions that does not involve your children or disability?
If you are on social media, when was the last post only about you, that does not include your children?
When you wake up in the morning are you ever excited about something unrelated to your children?
Before you go to sleep, what do you think about, worry about, get excited about? Is it ever about something that is just for you?

SCARY, isn’t it. What we wanted to be and what we have become.

Most Moms, say I love being a Mom, it is what I always dreamed of.  Well, no-one dreams of being a special needs Mom. No-one dreams of the therapies, the appointments, the behaviours, the tiredness, the relentlessness, the stress, the isolation, the loss of dreams, time and life. No-one dreams of the all consuming world of disability. Yet, we love our kids and we have no choice. We enter it, we embrace it, we take it on, we fight, we struggle, we cry, we celebrate the achievements, we push through and in all of that we lose ourselves.

We spend our lives advocating for society to see the child and not their disability. To accept them for who they are as a person. Yet, as the saying goes “behind every great man is a great woman”, well behind every child with a disability is a great parent. In order for our children to become great, to reach their full potential, to be accepted, included, access all they need, and to be loved we give everything. We have nothing left and we lose ourselves. We become a “special needs Mom.”

I know, I became one. I am one. I lost myself, forgot who I was and whilst I did everything for my children, I as a person, as a woman slowly died. I wanted the world, my friends, my family, my lover to see me as a woman, however, I didn’t know who that woman was anymore. The Mom existed, the woman was lost. I don’t even think I saw myself as a woman anymore.  My whole identity had become being a Mom, being a Special Needs Mom. After having 100% care for 13 years of 3 kids, 2 with special needs and 2 with medical conditions, of course that was who I was, who I am. Yet I am more than that and so are you. You deserve: your own life, your own passions, your own time, your own personality and your own identity. You deserve to be the woman you want to be. You deserve to have a life too, your life.

If you are ok, your children will be ok. If you are happy, your children will be happy. If you can find a world outside disability, your children will enter that world too. Take a moment, to remember who you wanted to be. Try to have just five minutes each day for you. You are worth it, your children are worth it. Whoever you are, whatever your situation, however high your children’s needs are. They deserve more than a special needs mom, they deserve the beautiful, wonderful person that is YOU.  Find the woman, find your happiness, find You!

My friend is joining a club. It is a very exclusive club. To be a member of this club is something people aspire to. It takes years to join. You apply. A member has to sponsor your application verifying you are of the right social background, that you are the right kind of person, that you know the right people and that you will behave in the right way. Once you are sponsored, you “court” some of the members showing off your impressive social skills. You must abide by a strict dress code, a grooming code (yes, even down to the way you wear your hair) and a code of behaviour at all times. Then you wait until a membership becomes available, often years. You pay huge annual membership fees to be a member of the club. However, once you are in, you are, I guess the pinnacle of society, you mix with the wealthy, mingle with the great and have access to amazing facilities, golf courses, tennis clubs, bars, restaurants, and probably more. There are weekend events. You will be invited to charity balls and will appear in the social pages. You may invite friends to “play” with you in the club, or lunch or dine as long as they too enter that world whole heartedly adhering to the rules and codes. You and your family will be welcomed and accepted and you will get to know most club members. You may stay in the club as long as you choose, if you continue to follow their rules, pay their fees and don’t do anything scandalous. You may exit the club with notice if your situation changes.

When I was listening to her talk about the club, I realised I was already a member of a club. A very exclusive club. A club that no-one aspires to. A club that I didn’t choose to belong to.

The membership rules are a little different. There is no application process and certainly no-one verifies whether you will be the right person, (despite the fact people not in the club, tell you constantly that you must be a very “special” person to belong to this club.). This club is in-descriminate of age, race, religion and social standing and you will find once you join, those things no longer matter. Some people enter the club immediately on the birth of a child, others fight for a diagnosis, and some join through accident, injury or medical condition later in life. Once you join though, you will be welcomed.

There is no set membership fees, however the costs are exorbitant and life long. The club will take up every minute of your day. It is a 24 hour, 7 day a week club, with no holidays. There is no exiting this club. Just like my friends club there are incredible facilities and equipment. There is medical equipment, life saving equipment, mobility equipment, communication equipment, modified vehicles and the list goes on.

There is a dress code for many, you will notice the practical shoes, often minimal jewellery and usually older clothes as members time and money is focused on other things. Whilst they may have done the best with their hair they will always have tired eyes. The behaviour code for this club, is certainly a little different, where behaviours won’t be judged. You won’t be thrown out of the club because of behaviour, in fact you might be welcomed in. You won’t be invited to charity balls unless you or your family are the charity. You won’t invite friends to play with you in this club, in fact most of your friends and even some family will leave you when you join.

This club does offer some amazing benefits, though not quite the same as the socialite club. Once you join, you will cry like you have never cried before. You will feel pain that you did not know was possible. You will love beyond your wildest imagination. You will find qualities in yourself that you will be immensely proud, especially strength and courage. You will learn patience and resilience. You will live one day at a time. You will see the world and those around you in a completely different way and many things that once seemed important will now appear trivial. Your perception will change. You may find it hard to relate to those not in the club, as your world is different now.

As a member of the club, you will meet the most incredible people, not necessarily the rich or the famous but people who will love and accept you and your children for who they are. You will be touched by kindness and generosity you have never before experienced.

You will never know all the members of the club but you will come across them on your journey, your eyes will flash with recognition and there will be a shared understanding, a shared knowledge and a shared empathy. You will find people in the club who become your closest friends, they will guide you, they will support you, they will understand you and they will stand by you. They will not judge you.

So whilst it is not a club that others aspire to, whilst it is not a club I chose to belong to, it is a club I am in. It is a club I am proud of. If you are new to this club. Welcome to the club of being a mother to a child with a disability.

Welcome to the Special Needs Mums Club!

(If you would like to be a member of our Sprinkles of Life Club, follow on Facebook and sign up on my blog page for newsletters, information, offers and gifts exclusive to this club.)

“I CAN’T WAIT!” my child yells repetitively, making siren noises and bashing his head with his hands. “I CAN’T WAIT, I CAN’T WAIT, I CAN’T WAIT. “ Now, apparently he has an issue with waiting! Therapists say this is due to “autism”, which of course could be true, or perhaps he inherited his lack of patience from me. (Watching him, as I sit waiting I feel like doing the same thing, screaming I CAN’T WAIT!) Whatever the reason, waiting for any child is tricky, waiting for a child with autism is almost an unbearable torture. The irony is for many children with autism their life is full of appointments, endless therapies, assessments and medical appointments and before each of these they have to wait! This causes meltdowns for the child but even worse: the anxiety, build up, dread and exhaustion of having to deal with this, often daily, is even worse for the Mum. So having had 3 children, 2 with special needs and 2 with medical conditions, here are my top tips for waiting for an appointment.

Top Tips for Waiting for an Appointment with Children with Autism

1. Where possible DON’T wait. It can be very challenging for children with ADHD, Autism or other behavioural challenges to have to wait (or in fact any child), so if you can avoid it, do. e.g. I usually try and make our medical appointments first thing in the morning, so no-one is before us, meaning “waiting rooms” are empty and the professionals aren’t running late yet. If that is not possible, I have a relationship with our “medical team”, and I will keep my kids outside or in the car and they SMS me when they are ready, so we can walk straight in.

2. Don’t call it waiting!! If I say we have to wait for the Dr, we will get the response mentioned above…..”I CAN’T WAIT”. If I say, its play time until the Dr….wow… we don’t even realise we are waiting. We do not call it the “waiting room”, because that will seriously not go down well, we call it the play area, toy room, fun room etc. I mean a whole room, just for waiting… in my kids world that is a room of torture.

3. Make it Fun!!! Remember, if you are feeling anxious, getting stressed, pacing up and down, playing on your phone, your child or children will pick up on that and feed off your stress. If you (even pretend), to be relaxed, be engaged with them, have fun, they won’t even notice the time go by.

4. Snacks, snacks, snacks and more snacks! It is amazing how a little picnic of snacks (especially a special treat) can pass the time, alleviate anxiety and make the “waiting” a little brighter.

5. Games/Activities. As many of our children will not be amused by games, books or activities provided in waiting rooms. Bring your own. We have a special pack full of games, stickers, colouring that is ONLY used at these times. This makes it fun and exciting. For one of my kids he has a DS and he is only allowed to play it when we are waiting for an appointment, (or on a travel trip.) He loves his DS and so this makes him really excited to go to an appointment because he finally has his DS to play on. He often wants to leave home early so he has extra time to play on it. Great Incentive – imagine your child wanting to go to an appointment!

6. Bring everything and the kitchen sink!! Remember you do not know how your day will go, how long your wait will be, if plans will change. I know when we go to the hospital for a check up, often it can turn into blood tests, or seeing different departments and suddenly what should have been an hours appointment is a day visit. So if you need continence products for your kids, special food or drinks, medicine at certain times… make sure you have it all and more. This will relieve your stress while you wait. As the scouts say BE PREPARED.

So, they are my top tips for waiting for an appointment. Now how about waiting in a queue e.g. at the supermarket, post office, bank. My advice, take your child, tell them they have to wait and let them scream the house down…. usually mine clears the room within seconds.  Lets face it  a screaming child is not good for business or customers, so we get right to the front of the queue…ok I know this is not politically correct or perhaps sound advice for the child, however surely we get some benefits even if it is just skipping a queue. Good Luck with Waiting.

Sprinkles

Are You in Your Schedule?

As the year begins and routine sets in, every Mum I know makes a schedule. A weekly spreadsheet of all the activities the children participate in. This helps us and them know what each day will look like, the clothes or equipment needed and the logistics we need to overcome. Every family I visit has a schedule on the wall (whether they have children with special needs or not.) There is time allocated for them to participate in their passions, to be part of a team, or to achieve a goal. A slot of time is allocated weekly for sport, music, dance, drama, therapy sessions, appointments etc. It is hectic and we as Mums, spend our lives, organising, co-ordinating, driving, waiting, watching, cheering them on and making it all possible. This is what we do. This is part of our role.

At the end of each day we are exhausted. We have spent all our energy being a Mum, with no time and no energy to do something for ourselves, until we have nothing left to give, until we have lost who we are, until we become ill, until we find we have lost our relationships.

We say we have no time, yet we manage to find the time for our children to do everything they need or want. So how, when we have a child with special needs, do we find time to still be who we are, to have the very important self care, to maintain friendships, to keep fit and healthy, to see a movie or go on date night. These things unfortunately are not going to happen, they just like in our children lives have to be planned and organised (and I know the logistics can be a nightmare.)

Top Tip for Finding Time For Yourself

So my top tip for finding time for yourself is put yourself in the family schedule! Sounds, strange I know, but I have NEVER been to a families home and seen Mum or Dad in that weekly schedule. It is always only the kids therapies and activities. In order for routine to happen, in order for us to maintain some sense of control we follow those schedules and yet we are not even in them. So today, I encourage you add another line to your schedule – the you line and for each day of the week mark off time that is just for you. What are your goals, dreams or passions? For example imagine if you put in 1 hour each day just for you. Monday might be a fitness class, swim, walk, yoga etc. Tuesday might be seeing a friend, Wednesday might be sleeping/reading and so it goes on. When you put your children’s activities in to the schedule, you make it happen no matter what. You are at that therapy session, or appointment, you organise everything around it. So, use the same skills and do it for yourself! You deserve it, you need it. It will make you a happier person and therefore a better Mum. It will strengthen your relationships and it will give you the resilience you need to carry on through the years. This is your life too!!

I know many of you will be saying/thinking, I have no idea, there is no way I can fit an hour a day for me into my life, then start small, make it half an hour. JUST PUT IT IN THE SCHEDULE, then plan respite, babysitters, or supports around it. You can do this, just like your child with special needs may need therapies, you need YOU time. You make it happen for your children so make it happen for you.

Let me know what you are putting in your schedule.

 

Of course, I have bags under my eyes from years with no sleep, I have wrinkles from age and deep worry lines. Yet here I am nearing 50 and I look in the mirror and my skin looks young, smooth, silky and shiny. I’ve never had a “skin routine” or facial (lets be realistic raising three on your own, two with special needs and medical conditions, I certainly didn’t have the time, patience or money.) So, why is my child with special needs responsible for the welfare of my skin? How do you have beautiful skin when you have no time, its the lowest priority on your list and you have children with special needs?

The answer.
When my son was young every time he would have a melt down, every time I felt I couldn’t cope, every time I needed to cry my heart out, every time I was overwhelmed by what my life had become. I would go into my bathroom, look in the mirror, take out my little pot of moisturiser and start to rub it into my skin. Slowly I would massage away the pain. First across the forehead, then under the eyes, stroking the cascading tears from my cheeks. I would breath and soothe my heart. Eventually, when all the moisturiser was absorbed, when I was calm, with my skin shining, I would force myself to smile in the mirror. Speaking to my reflection I would say “you can do this” and return to the mayhem awaiting me.

Some weeks I would go through pots and pots of moisturiser and my skin would almost break out like a teenager, yes, they were the difficult times. Other nights, I would lie in bed and my skin would be dry and that was how I knew it had been a great day.

The years have passed and I see my friends having botox and plastic surgery to fix their sagging, wrinkly skin, I smile to myself and think well aren’t I lucky to have a child with special needs who made me moisturise so much that now my skin shines.

In that Moment

An ordinary day. I was sitting at the airport, waiting for my sons flight to depart, listening to a couple fighting about who was to blame for leaving their sons lunchbox in the hotel room when my phone rang. My partner had gone to hospital with severe chest pain.

In that moment the world around me went silent
In that moment the air was sucked right out of me
In that moment darkness filled my mind
In that moment my knees collapsed beneath me
In that moment my future dreams were shattered
In that moment nothing else mattered
In that moment I knew what love was.

Then came the words, “I’m ok.”

In that moment air gushed into my lungs,
In that moment the sounds around me erupted
In that moment my mind cleared
In that moment my strength returned
In that moment I said the words
I love you

I CAN

As we start the New Year, we make resolutions, promises to ourselves of how we will be better people. Resolutions of improvements. I won’t drink, I won’t smoke, I won’t eat chocolate, or promises of what we will do… I will lose weight, I will get fit, I will work harder, earn more, keep the house cleaner. So we try, and the first couple of weeks we are obsessed. We can’t stop focusing on the fact we aren’t drinking… eating no chocolate at night. We do our sit ups and clean the house. Soon, we become complacent, it won’t hurt to have one chocolate biscuit… just a couple of beers as a friend is here…. life becomes busy and routine steps back in. Resolutions are broken and soon forgotten. We failed. It is almost as if each year we set ourselves up for failure. Then we feel bad about ourselves which in turn increases  the negative habits. e.g. Eating even more chocolate to comfort ourselves.
Most of us can’t even remember our resolutions from previous years. So instead of a Resolution, this year I have decided to put two words in front of my sentences… two words in front of my goals…. I CAN.
I can. I can choose to drink less. I can lose weight. I can get fit. I can keep the house cleaner. I can make more time for me. I can write a blog. I can surf. I can ride a motorbike, take a holiday, rediscover myself. I may not do all of these things all the time but I can do them.
I can speak the truth. I can say what I believe. I can be myself. I can do all the things people said I can’t. I can…