A balancing act.

My two daughters are polar opposites, sometimes this is a blessing. Sometimes it makes an already hard job, even harder.

H is autistic, lives life to very rigid rules, is an introvent and avoids social situations whenever she can.

S is NT, spontaneous, full of fun, bubbling with positive energy, is an extrovert that loves being around people and being busy.

I quite like to live by schedules, I love to-do lists and I like having things planned in advance, I don’t like plans changing at the last minute. I like having H around to make that ok, actually very necessary. I’m not an overbearing mum, I’m  mum or an autistic child who needs structure.

I also like to socialise. I love being around people, it energises me and fills me with happiness and love. Having S gives me the perfect way to balance this out. We socialise together, have play dates, go out and see friends.

However sometimes it’s not all rosy. In the school holidays, S wants to be spontaneous and have fun filled days with friends and play with her sister. She gets an idea of a game and wants to play it NOW! H can’t cope if that’s not on her schedule. She hasn’t got the language and social skills to be able to say to her sister,that sounds like fun but could I please finish doing what I’m doing first as it’s hard for me to stop half way. She just refuses. Then realises she may have upset her sister but doesn’t know what to say to make it better. The I’ve got two upset girls and I can’t balance our my time to make it better to each of them.

S says sorry to me, I say, you don’t need to be sorry you were just excited and wanted to have fun. Just next time try remembering she can’t transition well and come and ask me when a good time would be to talk to her. Ok she replies and we hug. H doesn’t say sorry, in her world she hasn’t done anything wrong. But she does repair the damage by agreeing to play with her sister, later on, when she is ready.

I’m typing this listening to them having a wonderful time, playing the game S wanted to 5 hours ago. Balancing just takes time, a few wobbles and some determination. It’s a balancing act for all of us

Taking time for myself

I haven’t blogged for a while. I’ve been kinda busy. But in a good way. In April I jumped into an adventure for totally selfish reasons but I don’t regret it at all. It has nothing to do with SEN, with autism, with being a mum. I think that’s what I love about it! And although it began as an escape from all of the above, it has come round full circle and ended up helping with all of them.

Autism and SEN was starting to define me, I was becoming the victim of my daughter’s diagnosis. H isn’t a ‘victim’ so why was I? Every waking moment I had, I was researching, learning, immersing myself in autism. In a hope to be able to help our family and make life easier. But I think it was having the opposite effect. I wasn’t seeing other things, I was becoming obsessed. No obsessed is the wrong word… addicted is more fitting! I needed to go cold turkey.

I couldn’t just stop though. What else would I search Pinterest for? What blog posts could I read. What could I do with my free time? Yes I could just relax, spend time with friends and family. But the addiction took hold of the little snippets of time when I couldn’t do those things. Whilst watching the TV, while the dinner was cooking, while I was waiting in a queue.

A friend of mine in San Diego had been asking me to become an Independent Consultant for Arbonne International for ages. I liked the sound of it, but kept putting her off with ‘I don’t have the time’, ‘I’m not right for this business’, ‘I need to be around for H, I can’t commit to anything new’. Then I woke up one day and say yes. I didn’t tell anyone I was going to do it, I just took a leap of faith. I am so glad I did/ This has given me so much in the 6 months I have been doing it. I’ve found a new passion, and one that is far healthier than my previous addiction!

Arbonne is a network marketing business, with a difference. It isn’t about meeting sales targets or making as much money as you can in a short amount of time. It’s about building a succesful business through personal growth and making new connections. The training is all online, in documents, videos and voice recordings making it really easy to do in small pockets of time. It’s about learning how to be more confident, assertive, to take risks.  It’s about believing in yourself, and beleiving you can help others.

Can you see why it’s now coming full circle? I feel more confident and assertive. I am more grateful for what we have, positivity is exuding out of me. I am helping people and teaching people, making a difference in their lives. I feel like we are more in control of our family’s path, something we had lost along the way. And all of this from selling skincare and make up? Yes! But it is so, so much more. It’s about taking the time to do something for myself, to have something else to focus on. Something to excite me and make me passionate about in a positive way. I cannot recommend it highly enough.

Find your adventure, jump right in! Find your happy place and fill up on self care. It will be worth it, the sacrifice is worth it, you are worth it!

http://KimberleyEvans.arbonne.com/

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The A Word – jealousy

As a mum you want the best for your child. That is instinctive and comes whether your have a healthy, neurotypical child, one with special educational needs or medical needs. You want the best and above all you strive for them to be happy.

Having a child with special needs means that happiness is harder to find, so imagine how hard it is when they find happiness in others but not you.

I’ve watched Alison in The A Word try and try and still fail to communicate with her son. And then watched as someone else breezes in and does it with such ease, the dad, the older sister, the therapist, and last night Maya.

“Just another of her many talents … a fast track to my son.”

My heart went out to her, I’ve been there so many times.

Friends and family mean well, they don’t know how much it hurts. They think its nice to hear how well Holly has coped with a situation, how much she has enjoyed an activity with them, how happy she was with them. And it is nice, remember I only want for her to be happy.

But it cuts like a knife too.

“She is not like that with us.”, “She smiled the whole day.”, “She seems to happy at school.”, “She has been so well behaved today.”, “She always eats all her dinner here.”, “She is always so polite.”, “She never has any problems when she is with us.”, “I’ve never seen her do those things.”

They are said with love, not with scorn, but they still hurt. Why can’t I have the happy times? Why can’t I get her to do those activities? What is wrong with me? All those things make for a very jealous mum.

Why do other people have the fast track to my daughter and not me? I’m the one who goes to endless meetings with consultant, therapists, SENCo’s. It’s me that spends hours in the evening reading Pinterest for ideas to ease her sensory issues, to find that magic wand to help her. It’s me that spends hours planning our family’s time to make it easier for H to function, to make sure there are no surprises. And it’s other people that reap the rewards.

It’s pure jealous, I am the green eyed monster and it is not a very nice side of me. I am happy that she is happy, that is there, but deep down, wouldn’t it be so much nicer if it were me?

I can totally and wholeheartedly relate to the character of Alison. I can identify with the love for her child, the jealousy, and the negative effect that has on the rest of her life. Jealousy is a horrible way to live, it eats you up inside, it makes you doubt other areas of your life, it zaps your self esteem. The green starts to take over your life. jealousy

I’m not saying I don’t want to know when H is happy, I really do, I want to enjoy her good times, even if they are not with me. I guess I’m just saying don’t judge me when I’m not over the moon about it all the time!

The A Word – The mum.

I’ve really enjoyed watching The A Word on BBC1, it is a heartwarming, accurate drama about life with autism. It shows brilliantly how it affects the whole family. There has been a lot of negative press about the mum of the family, Alison, played by Morven Christie and I couldn’t understand why. People were saying it was inaccurate, that she was a bully, a bitch and over controlling. That they were disappointed that the programme showed her ‘neglecting’ her elder daughter, for not wanting to believe her son has autism. People have been flooding the internet about how inaccurate this is. But is it? Really?

I’ll be the one to step out and admit, this is pretty normal. Or is it just me? I don’t think it is. As a mum of a child with autism you go through an awful lot of emotion. It’s blinking hard. I have been a bully, a bitch and over controlling. Partly because you have to be in this life, to stand up for your child, to fight for their needs. Partly because this journey sends you that way, it messes with your head. I am like a bear with a sore head who has woken up on the wrong side of the bed a lot of the time. I am exhausted from keeping it together in front of my kids and on edge waiting for the next thing to go wrong and I take that out on my husband.

I think the negative comments are coming from mums who do not believe or cannot admit that the mum is actually pretty accurate portrayal of an ‘autie mum’. They feel guilty after seeing it on a prime time drama for the world to see, they have been outed in all their negative glory. They are ashamed and lash out at the programme makers for not portraying her in a more loving, sane way. But that is not accurate.

We love our children, we would do anything for them. We beat ourselves up about how rubbish a job we are doing. We feel bad that we didn’t push harder for SALT (maybe we should have stalked a therapist like in episode 3). We feel awful that so much of our time is taken up with autism that our NT kids sometimes get left behind, that they sometimes get second best. We hate ourselves for being ultra controlling but when everything is spiraling out of the control that is the only way we can deal with it. We cry ourselves to sleep worrying about the effect the stress is having on our marriage and wish we could take away the nasty words we said earlier in the day.

Or it is just me?

Feel free to tell me I’m wrong. But if you want this programme to change people’s views on autism, to work towards not just awareness but autism acceptance then stop trashing this amazing story. Be as brave as our children are and admit that that is real. That Alison is real. We are that dark place of autism.

Because we take that darkness so our children can have the light.

 

www.tired.com

I am tired, exhausted, worn out, drained. Yes I have two kids, two part time jobs and a house to run. But not that kind of tired. I get 8 hours sleep a night and I know people very close to me who have had a baby recently and they will be very jealous of that! You can’t say you are tired if you get that much sleep! It’s not a ‘been up till 3am partying’ type of tired either (although I’d be quite happy if it was!)

It seems a bit indescribable. People look at me and I don’t look tired, I don’t have bags under my eyes. I guess it’s my brain that is tired, my patience, my ideas, my resilience.

Lots of you have tweens. Lots of you have two tweens. Girl tweens. Hormones, attitude, sassiness, mixed in with the need for love, security and understanding. It’s a tough road to be on. Now how about you add a toddler into that mix? Don’t be daft you’d all say. What  a teenage girl, about 15-year-old. As well as the above. That’s insane you’d say, how are you going to cope with that!

Well that’s what H is all in one person. She is 11. So a fully fledged tween with all the joys that go with it. She has new hobbies that I can relate to and join in with, like hair, make up and blogging. She has body hang ups, she is moody and hormonal. However she is so high functioning that she has the intelligence of a 15-year-old. A 15-year-old with the emotional intelligence of someone half that age. Imagine how hard that can be for her. She has always been young for her age, beautifully naive and protected from the world. She is more 8 in that respect than 11. When she is having an anxiety attack or sensory meltdown she is like a toddler. A whiney, whiney toddler who can’t use their words. Remember that? Remember how the only way you got through it was by realising that it isn’t forever, they’ll grow out of it soon. Every day comes with a new word that makes communication easier. But what happens if it doesn’t? She wants to use her words, she has a head full of them, she got a level 6 in English for goodness sake! But she just can’t get them out, the anxiety and frustration take over and she reverts to a toddler that needs dressing, that can’t make a choice even when only given two options.

That’s why I’m tired. When she comes in a room, or I go into hers, I don’t know what I will be faced with. Will it be the 2-year-old, the 8-year-old, the 11-year-old or the 15-year-old? Will I be having a funny conversation about soft toys, discussing the benefits of a particular foundation, intelligent discussion about grammar school homework, or trying to coax her out of a ball on the floor and get her dressed?

That is tiring. It’s tiring when it’s all part of your kids growing up and you know that tomorrow will be better. It’s tiring when it’s one element per child. Imagine how tiring it is when actually each day is getting worse, when all of those things apply to one child, all within the space of half an hour. And I don’t feel like I should be complaining, if I’m tired, then how must H be feeling? The poor girl must be so confused and exhausted.

Sometimes I’m too exhausted to think about being tired, the dinner still needs to be made, books need to be marked, S needs a mummy who is there for her. Other times I can’t seem to speak for tiredness. My brain shuts down. It’s those times when I don’t need advice, my brain can’t take it on board, all I really need is a hug. Not words like, ‘it will get better’ because I know it probably won’t, not in the near future anyway. What I actually need is ‘I know, I know how hard it is’; just a bit of understanding.I just need to lay down (metaphorically and probably physically) and take 5 mins to recover.

Just to give me time to replenish the stock of patience, resilience, love and understanding. Then I can carry on. because I have to.

Inside out

inside out

H had been looking forward to this film for absolutely ages; a new Disney Pixar movie and one that explain how your emotions work, I could understand why!

The film is incredibly clever, it personifies our emotions, making them into likeable characters and shows how the different emotions interact with each other and how that differs in every one of us.

In the film the character Joy rules supreme, she is in charge of keeping Reilly happy and she does a great job, in fact they only reason Reilly gets unhappy is because Joy gets lost in Reilly’s subconscious with Sadness leaving Fear, Distaste and Anger in control of her emotions.

In our everyday like H’s emotions work very differently, Joy is certainly there, but she is not the ruling emotion, in fact I’d go so far as to say in they all play a part in her day to day life and we have to work really hard to ensure Joy stays in the forefront. Our lives need order, stability and planning. If we don’t have that, then Anger, Fear, Sadness and Disgust all vie for the controlling emotion. It’s hard work, but necessary and certainly worth the extra effort.

inside out fear

We have a little joke with H that she would make a wonderful Health and Safety officer, she has a wonderful knack of seeing the worst possible outcome in a situation. ‘Don’t do that, you’ll fall!’ … ‘but it might break!’  … ‘but what if?’ are regular utterances. Anxiety Girl to the rescue!!!6ab29dec030bebbc9428990f245d7514

She also has social fears, these stop her trying new things, from calling for friends (‘what if they say no?’), from asking for help, from saying things incase she gets it wrong.

Fear comes from her aspergers, yet it is often counter balanced and cancelled out but her ADHD, but in split seconds. It becomes a revolving door, I want to, I don’t want to, I want to, I need to, I don’t  want to … etc and you never know which one she is going to jump into.

inside out disgust

I quite like Disgust, bizarre I know, but Disgust is normal! When Disgust comes out to play I say thanks for a normal moment. because H is nearly 11, pre teen with all the hormones that go with it. We have plenty of normal moments, eyes rolling, sassy back chat, and stomping up the stairs. We don’t allow it, there are always sanctions, but it’s nice to deal with something more normal and easier to understand.

inside out anger

Anger can go hand in hand with Disgust, sometimes he can feature on his own. When he’s with Disgust again it is normal stuff, anger at being told off for doing something she shouldn’t or rather, being caught out at it! Or getting angry with her sister over terribly normal sibling stuff.  But other times she is angry with the world, with her world. She gets angry when she doesn’t understand why. Why and how she has upset someone, why we don’t understand her actions, why she is different. We’ve been through some horrible, dark times when she really couldn’t deal with her anger, she was hurting herself as a defense mechanism and Anger was becoming the dominant personality. Luckily we are through that now and it is now a rare occurrence rather than the norm.

inside out sadness

We don’t see Sadness too much, she is there a lot of the time with Anger, but Anger is the more dominant character and we get displays of Anger far more than tears of Sadness. Because things are more black and white for H, her emotions play out differently to others. When she recently left primary school there were no tears at all, her class mates were in floods of tears (as was I), yet it was not an emotion she knew how to relate to. Anger came instead, she dealt with the mixed emotions and draining experiences that week by having anger meltdowns, with nasty words, slamming of doors, shutting herself in her room and not wanting to speak to people. We see Sadness in other times, more out of frustration and lack of understanding the world around her. When things are simply getting too much to deal with.

It’s hard not having Sadness around much, in the film Joy realised that the memories that Sadness had created weren’t bad memories, Riley needed Sadness to show other people she needed help. When someone is sad you know they need cheering up or help. The absence of that emotion in H makes it harder to help her. We’ve had to learn that when Anger comes out to play, that is when H needs help. It’s taken a long while to understand that, but now we do, life is a lot easier to deal with and we can get back to being happy again a lot quicker.

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Finally Joy. As I mentioned before, Joy was absent for a while. H struggled to be happy for a long while, but with help from family, friends and school, we managed to rescue Joy from the Memory Dump. Just like in the film, Joy had fallen into the Dump, where memories that have been forgotten about fall. But as I said earlier, once we had realised that it wasn’t Sadness that signals help for H, but Anger, we managed to rescue Joy and life has been a lot sunnier and happier since.

Joy is now the prevailing emotion and I am so happy to be able to say that. We see it in many ways, from singing and dancing at 6.45 am on a school day, from talking about her Blobbles, being proud of a new achievement, having fun with her friends, laughing at funny jokes on the TV, sharing moments with the family, to all the quirky, funny things that H does.

As I said earlier, it takes a lot of hard work to make sure Joy is the controlling emotion. We have timetables, charts and lists every where for every part of H’s day and life. It takes a lot of extra work and spontaneity is not something that works well! But it works so it is definitely worth the extra effort. In fact putting that effort in makes it easier in the long run, having to deal with meltdowns is far, far more stressful than what we do on a daily basis.

Welcome back Joy, long may you reign supreme!

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Blobbles

Welcome to the world of H.
When you are tired and grumpy on a work day morning, rushing round getting all the things done that a mummy has to do before 8.30am, H can say something that as stressed and grumpy as I am cannot fail to put a smile on my face. It may test my patience but I still have a little smile.

She’ll call out – “Careful of your Blobble! It’s going to fall off your head!”

What on earth is a Blobble? A blobble is a small fluffy thing that lives on top on everyone’s head. Did you not know you had a blobble? Ah well, then you have not been in H’s wonderful world then!!
Everyone has a blobble, according to H they are different colours, your one is your favourite colour, so mine is green.
They don’t have a purpose (I don’t think) they just run around on the top of your head (they about the size of your fist) and you have to be very careful that they don’t fall off.

So when I am running around like a loon in the morning making breakfasts, packing lunches, doing last minuet marking or lesson preparation, I have to be very careful not to put my head down for too long or my blobble may fall off! It’s these little flashes of inspiration, of wonderful fun, of naive brilliance that make me thankful for H’s conditions. They bring us so much joy!

Maybe it has a subtext, maybe deep down a blobble is teaching you to keep your head held high at all times, or maybe it’s just a fun little quirk in H’s world. Whichever it certainly brightens up my day!

What colour is your blobble?