The Promise.

“So what’s going on Fi? You’re nowhere to be found on social media lately and I KNOW what that means with you. How are you really doin? What’s the go”?

Crap. I knew she had my number and I wasn’t going to get away with my standard ‘everything’s going great guns’ answer because she would’ve seen straight through it. I took a long sip of my coffee and considered my answer carefully before replying.

“Well, it’s like this. I see that I have two options: I either run away and start a new life somewhere else, or I stay and continue fighting the system until my boy gets the help that he so desperately needs.”

She nodded in understanding but the scepticism was written all over her face. So I continued:

“There simply are no other choices here, and my son deserves much more than a mother who flees because it’s all too difficult. He deserves a mother who will knock down different doors and follow different leads until she finds the one that eventually leads us to success.”

She looked at me and smiled before replying gently:

“That’s all very well Fi, but what about you? How are you going to continue fighting when you’re this exhausted and this beaten down? Who is going to take care of you when you hit rock bottom and can no longer function. You can’t be everything to him when there’s nothing holding you together”.

I laughed resignedly and said:

“This is not about me. This has never been about me. “

She nodded again and waited for me to continue.

“Right now, I don’t have the brain space to think about anything or anyone except my next move when it comes to helping Harley. I’ve had to let friendships slide and social engagements pass. And lately, I’ve not had the ability to plan anything past the next ten minutes. And to be completely honest – I really honestly don’t even care what people think of me right now. None of that stuff matters when your sole focus is on helping your boy to survive in a world that seems determined to ruin him”.

I looked my friend square in the eyes and I challenged her:

You’re a mother too, you get this right? You get that this is consuming me and that I just can’t rest until I start to see some progress with the horrible and relentless demon that is his mental health? Surely you get that I can’t just walk away from this, I can’t give up on him because if I give up on him, he has no one. I just cannot and will not walk away”.

She nodded and sighed.

“This really sucks . Another wine?”

And then we both collapsed into a ridiculous fit of unrestrained laughter. I mean – what else could we do but laugh?

*************

I made this precious baby boy a promise that I fully intend to keep.

I made this precious baby boy a promise that I fully intend to keep.

This afternoon I had a flashback. I was transported back into a hospital bed when I was handed the most wonderful little package 10 years, 11 months and 19 days ago to be exact. I remembered looking down into my arms after spending six hours in the worst pain imaginable. I recalled the moment that I realised that the pain was but a distant memory because in that moment – nothing else mattered.

I knew that I was deeply in love. I remembered looking down into the vivid blue eyes of my newborn son as time seemingly stood still. I remember the hope and the excitement that filled me as the dreams that I held for my son overwhelmed me and filled me with a compassion that I couldn’t explain or contain.

I made a promise that day. I promised my little boy that I wouldn’t allow anything to hurt him and that I would be his number one supporter no matter what.

Ten years on – I’m being held to that promise and I mean it as much today as I did back then.

I will not give up on him.

I will fight this until the bitter end.

******

Today I managed to secure an appointment with a new doctor for next week. I am trying a completely different tactic and have decided to go private and pay whatever it takes for the best help that I can possibly afford. So fingers crossed that this route turns out to be more successful than the nightmarish waste-of-time health professionals that have let us down time and time again in the past.

I would also like to thank those of you who have reached out to me recently via text, messaging and phone calls, I sincerely appreciate the support while I weather yet another storm in this mental health/autism/anxiety roller coaster ride and I apologise to those whom I have let down or not given enough attention too.

Please forgive me and know that I am doing the best that I can.

Love you all muchly. x

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If you’re new here – read this first..

First of all, welcome.

Sincerely.

I’m glad you have dropped by my blog for whatever reason. 🙂

A little about the history of this blog: I have blogged previously at 2 other WordPress blogs and originally began blogging about my family back in April of 2010.

During that time I was Freshly Pressed and gained a sizeable number of email subscribers, blog followers and daily hits. But one day it occurred to me that none of this was important to me.

I realised that I really didn’t give a toss about those statistics, but what I found myself placing more importance on, was being true to myself, protecting my children’s rights and writing from my heart even if it wasn’t going to get noticed. I realised that I didn’t want to write about what everyone else seemed to be writing about and I wasn’t really interested in becoming a big-time blogger.  (Plus, I didn’t have the time to put into promoting my blog or blogging regularly anyway!)

I wanted to go back to why I originally started blogging – to create a place where I would be able to gain the therapeutic benefits that writing brings me, and also so that I could share our story with other families who may be walking along similar paths.

I have learned a LOT since my very first blog post and I admit that when I started out, I was INCREDIBLY naive. I now realise that:

  • Not everyone on the internet is kind.
  • Having a child with a diagnosis is not always enough in common to cement friendships with other autism parents.
  • There will always be people out there who will disagree with you and they will not be backwards in coming forward with their views and opinions.
  • Some of them will get personal.
  • Being too honest will open you up to cyber-bullying and may get you accused of playing the “poor me” card too often.
  • You have to decide to either let them win or refuse to be bullied into defeat.
  • Some people on the internet hide behind their computers and write things that they would probably never say to your face.
  • Children don’t deserve to be ridiculed because of decisions and choices that their parents have made.
  • I am extremely emotional and make too many decisions with my heart and not enough with my head.
  • I am not like everyone else and I march to the beat of a very different drum. And that is completely and entirely ok.

So in saying that – welcome to “Wonderfully Wired version 2”.

This time I will be refraining from posting photographs of my children. (Yes I realise that the internet has things called caches and our digital footprint already exists) but I have no control over that. I do however, have control of what I post from now on.

To begin with, this blog will be mostly made up of a collection of my most favourite posts and the ones that I am most proud of. So those of you who followed the older blog (which is now deleted) will have a sense of de ja vu when reading some of these posts. I will be starting to add newer posts as I feel inspired sometime in the new year and when life has returned to ‘our version’ of normal.

Hopefully you’ll all join me to share in the trials and triumphs that 2014 will bring.

Fi x

Please note that the URL of this blog has changed to http://www.wonderfullywiredblog.wordpress.com so if you had the old URL (same but without the word ‘blog’ in it) you will need to change it in your bookmarks.
Also – if you had an email subscription or “followed” the old blog via WordPress – you will also need to re-follow or re-enter your email address in order to remain on the receiving list for new posts.

Thanks x

25 things to tell my children….

This is a list of 25 things that I really would like my children to learn about life and what I consider to be the most important things that I can teach them in my role as their mother.

I’ve written them all down in the form of a letter that I will print up and give to each of them when they turn 18 but for now, this list is laminated and stuck to the back of our toilet door!

I am amazed how much of this has sunk in over the past few years and regularly hear them quoting parts of is to each other.

Here goes:

My dear, precious, amazing children,

1. Please know that I love you all so incredibly much. And love is most definitely a verb.

2. There is nothing that any of you could ever do that would cause me to love you less. But this revelation is not permission to break the law, intentionally hurt someone or create havoc. There is also nothing that I wouldn’t do for any of you. But don’t deliberately push me just to find out my limit.

3. There are not enough hours in the day to show you how special you all are to me, and I want you to remember that even when it appears that I am pre-occupied and too busy for you – I’m only ever a hug away. I will drop anything if any of you ever need me. And don’t believe anything or anyone that disputes this because it’s simply not true.

4. I believe that you are all capable of achieving great things and I will support whatever life decision you make.  Even if what you choose to do is non-conventional and low paying. As long as it makes you happy and you do your best.

5. Having an asperger’s diagnosis gives you a reason for anger and resentment but not a right. There is a big difference. Some things will always seem more challenging and harder for you than for others but it’s not an excuse to give up. You are all blessed with many talents and skills and you WILL succeed despite being wired a little differently to your peers. Use this to your advantage instead. Choose to excel.

6. Respect those that are in leadership over you. You may not always agree with them but respect has nothing to do with this. If you learn this – you will go far in life.

7. Treat other people as you would like to be treated yourself and always go the extra mile.  Let people cut in front of you in lines, pay for friend’s meals and be the first one to say “I’m sorry” .

8. Don’t retaliate. It only exacerbates the problem and makes matters much worse. It doesn’t achieve anything but creates more drama and grief.

9. Always take the high road  – The view is much nicer from up there.

10. Don’t argue for argument’s sake and don’t desire to be right at all costs. It’s just not worth it in the end. Agreeing to disagree is a safer and much kinder route.

11. Stay close to one another. One day Dad and I will no longer be around and you will all need each other.  Even when you’ve all grown up and have gone your own ways – keep the sibling link alive and nurtured.

You will be pleased that you did.

12. Always do your best. You don’t have to always win, but as long as you gave it your best shot – that’s the most important thing.

13. Know what you want out of life and give it all you’ve got. Don’t worry if your dream is not the same as everyone else around you. We were all created differently for a reason. We don’t all have the same giftings.

14. There is no right or wrong choice when it comes to life plans.  The catch phrase I want you all to memorise and repeat as your life mantra is : Different is NOT wrong.

 15. Be who you are. Be who you were created to be. Don’t mimic other people because you envy their lives. Things are never really as they appear. Everyone has problems – some people are just better at hiding theirs than others.

16. Don’t sit back and expect everything to be handed to you. Work hard and work faithfully. God will see to it that you are rewarded accordingly.

17. Don’t believe everything that people tell you. If it doesn’t line up with the word of God and doesn’t sit right within you – don’t take it on board – it’s not for you. It’s ok to say no.

18. Don’t cheat and don’t be dishonest. You will ALWAYS be found out on both accounts and people will learn that you cannot be trusted.

Keep your integrity in everything.

19. Speak words of life and words of love. Don’t beat people down verbally and don’t always say everything that you are thinking. Once a sentence is out- it’s impossible to take it back again.

Think before you speak.

20. Choose you life partner wisely. Choose someone who you not only love, but someone who you respect. Make sure it’s someone that treats you how you deserve to be treated and treat them well in return.

21. Talk about everything before you decide to marry.

22. Ask the hard questions like:  Are we having children? When? How many? Where will we live?  What is our plan B if things start to go awry? & What is our ultimate escape plan as a family?  If you both know these things up front – most things can be worked out before they occur.

23. Aim high. Don’t settle for mediocre – you deserve the very best in life and don’t let anyone tell you otherwise.

24. Know your limits and learn balance. People pleasing is very taxing on your soul, your emotions, your family and ultimately your life. It’s impossible to serve two masters. Don’t let your work become more important than your family and don’t let anything become more important than your relationship with Christ.

Lastly and most importantly:

25.  Put your trust in God not man. Man will ultimately fail you because we are all only human but God will NEVER fail you or forsake you. He will never let you fall.

Love always Mum xxxxx

 

10 things Harley wishes you knew…

This is inspired by Ellen Nothbohm’s book “Ten things your child with autism wish you knew….

1. I have feelings and emotions just like everyone else. I don’t always know how to express them and they sometimes overwhelm me.   Talking about me or my behaviour while I am in the room is a very bad idea. I have autism- I am not deaf or stupid.

2. My parents did not make me this way by bad parenting. They are doing the best they can with what they know. I do not need to be medicated, punished or cured. I was born this way.

3. This is how God planned for me to be. It cannot be smacked out of me, nor will I grow out of it. If I am having a meltdown, don’t always assume that it’s because I didn’t get my own way. If my environment is crowded, noisy or action packed, my sensory system becomes overloaded.

4. I did not choose to be different. I just am. I am proud of who I am because I am unique. All autistic people are individuals and different to each other. Please do not pigeon hole or stereo-type me.

5.When you ask me a question….you need to wait for my answer. I need time to process it and may take more time than usual to answer. Please don’t hurry me, it will only cause me stress. I need to go at my own pace.

6. I need to complete my sentences in full. If you cut me off mid sentence or finish it for me, I will lose my momentum and get frustrated. This may cause me to meltdown.

7. If you are talking to me and you lean over and touch me- I may react badly. Please remember that you need to ask to touch me. I’m very sensitive to touch. What feels like a brush on the arm to you , feels like a razor blade to me. I  need to be pre-warned.

8. Just because I don’t look you in the eye doesn’t mean I’m not listening to you. I find it almost impossible to do both at the same time.

9. I see things as either black or white. There is no grey. There’s no point trying to make me see otherwise. I am only 9. I still need to learn the social art of diplomacy.

10. I am trying my best to fit into “your” world, so please learn more about autism so you can understand mine.