"An Unknown Journey"

Been reading forums and generally listening to families who, like us have a different journey and juggle complexities. 

I’ve read the support given from one parent to another. Similar themes and similar experiences. Completely feel your every frustration and memories of my own struggles echo. 

What makes me just wonder is where is the support for every family in need. Support they need not what a budget dictates or what services think they need. 

The voices are out there. The pleas are written in every forum. But still there are no gap fillers. 

It seems that people are left. They have to care, be problem solvers, find energy from every part of them, cry silent tears, extend their already thinning tolerance and become experts in law, in education and in disability. Experts in everything. Not through choice but through complete necessity. 

I’ve scrolled through the information written, the experiences and the advice support and reassurance. 

How hard is it for services to simply break free from medical models and empower?

Well, I decided the only way to change this stuff is to do it myself. Go out there and bring something together but beyond a support group. A forum to educate, inform and empower families. We are doing it all anyway, so may as well be qualified and educated in all these areas. 

Once a parent becomes empowered and confident and become qualified they are no longer simply parents. They are equal to the services therefore can ask and discuss things maybe as parents we felt intimidated to do so before. 

Information and knowledge and expectations. Don’t just settle. Fight but with intelligence. It works!!! And the advantage over everything is knowledge of our beautiful family member. 

A support group is valuable. A support group is empowering. But without structure and education maybe we won’t move forward enough. 

Sooooo interested? Give me a shout. 

Got some groups happening but will be available no matter where you live. Reaching out to be accessible to all. Ideas forming and technology being developed. 

To make a difference and offer support and reassurance the way we want it not how people think we want it. 

I’m not a victim. I’m a mum. Challenging and rewarding like any other mum. Just a lot more to navigate and a lot to consider. But not impossible and not at the mercy of what I’m told. I find out. I fight. I learn. I share and I believe every family can access what they need and feel empowered. 

I’ve got groups developed and developing. 

If you think it could help you tell me and let’s spread the word. 

As you know time is limited for us all to do things for ourselves. 

More so when there are difficulties in the household 

So those precious moments of time to do something for myself…

Let’s colour my hair I thought. So a drastic colour change was in order. Little did I know the colour was strong and would want to be spread across my bathroom as well as my head!!

Stupidly I decided I’d just get in shower to wash it off. Mmmmm now the bathroom is re designed. A splash of red on the bath panel, the grout now pink and not forgetting my body streaked as the dye run down within the water from the shower it proceeded to dye my body. Resembling a character from Charlie and the chocolate factory. How gorgeous!!!!! NOT

and so did I learn from my disaster? Of course not!!

So I tinted my eye lashes n eye brows. 

Eyelashes look better but the purple tint on my eyebrows haven’t given me the look I was going for!!!!

I currently resemble a rainbow of colours snda walking representative of disasters!!!

My next pamper session will be fake tan I thought. Am I just ridiculous!!!! The scenarios following this are endless. Will it put me off… no of course not. 

So…. the fake tan beautifully applied despite the lack of patience. All instructions followed. 

The next day!!!!! Streaky and uneven. Considering a bizarre hair colour, eyebrows coloured with a hint of purple I do represent disasters and really rocking the “have I really got time for myself” look. 

Soooo moral to that story???? 

Just lie in bed and do not move!!!!!!! 

Amazing contributions to children via the internet….. a huge world at their finger tips. 

Amazing access to places, information, study, people and everything you can think of. 

So without discussing the huge benefits that become part of our cyber world and then discussing the barriers and issues it can also cause, this post is about how are we managing it?

It’s out there and real and either we keep up or get lost or left behind. 

I think it’s obvious children know more than we do. They are the internet generation. But the cyber world has different rules and different things we need to make sure we know about to help them and keep them safe but also enjoy the world they are accessing. 

It’s become a diagnosed issue about gaming addiction, social media addiction and trying to live life through cyber world instead of the real world. But actually maybe cyber world is the new real world 

So How do we balance this with children who have social communication difficulties, cognitive difficulties and developmental problems? Suffer from sensory over load?

Im writing a paper on this. 

Researching, investigating and evaluating. 

If you want to help and share your story let me know. 

I’ll keep you posted… 

What questions to ask….  

So… ask me “are you ok?”

What if I answer “no”

What happens next? Do you think that you could spare the time to find out why. Or understand the things I have in my life every day that make an endless list of why I may not be ok. 

So when you think of asking “are you ok?” Maybe consider there may be a chance of me answering no I’m not ok. 

If you think you couldn’t listen, or know what to say then don’t ask the question. 

“You know where I am”

Another statement that is bland n empty. Yes I know where you are. Usually a million miles away from me, from my circumstances and my life. So yea I know where you are. You also know where I am. Where we are. 

“Let’s get together and do something”

When? It never gets planned and lets face it you give up as I’m not flexible like I used to be, nor in any mood to party the night away. My time wen I hav any free is spent exhausted n so excited to have my bed. So if I have any time maybe just plan something do able. 

“Your child is just like all kids. It’s normal” I will agree that first and foremost my child is exactly that a child. Not sure when I denied that or thought any different really. But the way he lives and thinks is infact not the same as a child with no neurological development problems. Not sure how hard that is to understand. If a child couldn’t walk I’m sure no one would say that their legs work exactly like a child who can run n jump 

So…. the things I may mention are infact real and normal in our life. But if my child was like every other child would I be struggling with the issues we have every day. So just understand some things are different n it’s ok to acknowledge that. 

” I don’t know how you do it”

Do what? Be a mum? I do my best and juggle what I can. If you were faced with it I’m hoping u too wud do the same. Be the best you can be 

So… words can be powerful but they can be empty. Don’t say things you don’t mean or couldn’t follow through on. 

Be honest and just be you. I don’t need fixing nor does my situation. 

Well it’s been a while. Probably a million reasons to document but to be honest let’s just go with lack of time. 

Realised that the real world has changed  hugely than the one I remembered lol

Not really been out of my own bubble for some time. Led by routine and our own comfort zone that we created. Which, may I say is rather normal for us. I often imagine the real world being more fun or faster paced with a million things happening that I’m missing out on. 

Having peeped outside of my bubble recently it’s pretty obvious my bubble is beautiful and comfortable and full of honesty, and the most gorgeous examples of humanity I could imagine. The real world is infact quite ugly and dark and full of pushing and pulling of ego, unhealthy competitive  actions and lack of empathy and lack of the basics of simply caring. Seems people are led by their own need and not looking at what can be given… taking and servicing their own specific ideas and wants. Saddened me to see this and reminded me of how society changes into something unrecognisable often led by some under current we are not privy to. 

I quickly felt lucky again and privileged to actually be exposed to needs and challenges we have in our bubble that are turned into positives and watching something lovely evolve and grow. 

Scary world and what becomes obvious very quickly is the beautiful human being I’m nurturing may have to be exposed to reality of a different kind. So how do I equip him with what he needs?

Still developing my ideas on that one!! 

Hoping that circles in his bubble continue to reflect positivity and the harsh aspects of the world simply by pass any connection with him what so ever. Wrapping up in bubble wrap maybe? Me living forever? Eeeeek scares me to the core. 

Not felt so excited about a holiday in ages. Fingers crossed we have sunny bright days and nothing to worry about. 

Planned everything to the finest detail as I have to. Long gone are those days when I used to jump on a plane and not know where I was staying. 

Every detail covered and planned. 

Just time now. 

Never really understood what being ready for a holiday actually was. Exhaustion and exasperation now reaching the limit and goal ahead is that plane. 

Never take anything for granted. Omg holiday well earnt. 

Stress!!!! Feel stressed!!!! It’s so stressful!!

Words I probably used a lot. Along with many four letter words !!! 

Calm down

It will be ok

You will be fine

Many many words similar to this heard on a daily basis. 

Nope…. none accurate. 

I can’t just calm down and suddenly think yaaaay it’s all gonna be ok. In the midst of chaos and unpredictability I quickly learnt it was ok to just know there are no quick fixes. 

So I started to look at anxiety reduction. Studied and read about different approaches. But none were realistic and when on earth was I gonna sit and meditate, roll the yoga mat out and move and stretch around the room when I can’t get up from a chair without feeling fatigued, exercise…? Mmmmm started to realise this wasn’t gonna work for me. 

Found that words were powerful for me, changing my mindset, working on developing me was something that was gonna help me. 

So….. started to jot down things that were happening around me. What made me feel tired, exasperated and engulfed me with the feeling I couldn’t carry on the way I was. 

It was hard to pick it out. It was hard to see what was happening. 

I studied the psychology of what was going on. Realised my brain and thoughts and emotions were driving me more than my body or anything physical. My brain and how I could then understand me was gonna be my strength. 

It was!!

If I believed I couldn’t do something I just flipped it and thought well I’d better find something to make me believe I can…

I did!!

Barriers were in me, I set my own limits and tolerances and learnt how to rethink. 

Fight using ur head. 

Many stories in the news raising awareness of mental health and people recently commiting suicide. 

https://www.theguardian.com/society/2015/oct/31/social-media-campaign-male-suicide
Mental health can touch us all in a lifetime. Some more than once. 

It can be temporary, it can be permanent. It can be controlled or it can take over. 

Every experience unique and triggered by so many factors. But for every person suffering or living with it… Mental health issues are real. 

Learn about it, ignorance is often the biggest issue with prejudice. 

Talk to people. Acknowledge they are struggling. Listen and hear what they say. 

It’s not attention seeking. It’s real. 

If you are worried about someone you may actually be instrumental in saving their lives. Mental health will contribute to those at risk of suicide. 

Seek help for them, talk, reach out to them, sign post for the right people to be involved. Don’t just switch it off and consider it no longer your problem. You may be the only one that can see it so help!!

Men find it even harder to talk about emotions and feelings. They are at risk of self harm and suicide for that reason of fear to know how to get help. 

Let’s raise awareness. Let’s do the right thing. Let’s find a way 

After finding out the norm wouldn’t suit my lifestyle and was throwing barriers preventing me being the mum I wanted to be I worked self employed. 

Difficult but juggled in ways I didn’t know I could. 

Now co own a company and realised it has been a huge learning curve and loooong learning journey but worth it. 

Can we say we are successful?! Errrm yea!!

Does it make it easier running our own business? 

In some ways yea. The needs at home extensive but actually time is mine. It’s ok to be late into work to make sure the morning routine has gone ok and equally ok to be home before the hard routine starts in the evening. 

To make up for any lost time at work….Emailing at ridiculous times, developing new ideas on my phone into the early hours. But one thing is for sure every bit of it for us and every bit an investment in so many ways. And I can be the mum I wanted to be… Well kind of. Don’t think I’d ever get to where I want to be. Wen I do that’s gonna b scary….. Always something to learn and work towards. Head never stops 

I’d say in any normal job i would be scrutinised and predujise inflicted. Appointments for my son are pretty much ongoing at different times of the day and the meltdowns can happen at any time for my son. So being unpredictable wouldn’t be acceptable in the norm… Being employed … Would soon be unemployment. Not many places understanding nor accepting. 

So I made my life the centre and found a way to fit around us. 

No one would really know what it’s like unless they lived it 24/7 , but prejudice still exists out there. Lack of empathy, understanding and same old record apparently being played. However it is our reality and ongoing and very very real!!

Somehow the passion for my work is keeping me on track to earn, to develop and grow and my home makes me happy to strive forward. Make new memories and be the many many different people / masks I must wear. 

Imagine having a late night, your child doesn’t sleep. You awake to start the routine ready for school. The clothes he wears are not comfy. The textures hurting his skin. His refusal to co operate. Then it’s downstairs n the routine continues. But the transport comes for him n off he goes. 

Trying to get ready. Desperately trying to get to work. Important meeting. Aware I need to look my best but that’s gonna take a miracle in the best of situations. 

Entering work no matter what has gone on walk through with a smile, a different mask and different role. Professional, firm but fair, creative and in control of my day. Potential phone calls throughout the day of situations. But hoping today is ok. 

Running a business is no different than running my household. Patience, focus, tolerance, goal setting, creative, innovative, resourceful and communicative. Nothing different!!!

If you can’t find the balance or support where you are…make money from what you know, what you do best and don’t fit into the world… Make a world that fits around you!!