Simply having a wonderful Christmas time!

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Happiness is wearing a bobble hat – apparently!

We’re a long way down this path now, BD (before diagnosis) seems a lifetime ago, when we were floundering around, not knowing how to cope, what to do for the best.

Now, we are a much happier family. A unit again.

It didn’t come over night, but know we know them the answer seems simple.

Put us first.

At Christmas though that is hard. There are so many other people around, friends and family, work colleagues, school friends, neighbours. But when you realise that if you put your family first it does all click into place.

Our extended family has grown and changed since BD. We have small nephews to consider and an elderly Great Nanna to take into account, a sister who is getting hormonal herself and struggling to remember why we function the way we do and even though they don’t like to admit it, my mum and dad are getting older and need different things.

My friend Sarah has been helped tremendously, she has been teaching me all about the ‘zero fox given’ type of lifestyle which can help you let go of unnecessary obligations. This Christmas was most definitely more of that about.

I didn’t worry about what the kids ate, what they wore or even where they were over Christmas. And my relaxed attitude to all of this really helped everyone to relax and a have a good time.

In fact it went further than that, because I wasn’t forcing anyone to do anything, they actually chose to anyway and we ended up spending more time together than usual.

So how do you get around that with all of those other people to consider?

Be up front with them, share your needs with your family and friends and work out a plan. Explain to them that your child isn’t being rude, they just need their own space. That they will come back and eat when they are ready. Share your plan for the day, you don’t have to justify what and why you are doing, but it really helps. It makes people feel included.

Then let go of all the preconceived ideas of how we SHOULD spend Christmas. If you are religious it doesn’t state in the bible that everyone has to be dressed to celebrate, I know they 3 Kings wore fancy clothes but the shepherds rocked up in their dirty, smelly work gear! If you are not religious Santa is not going to put you on the naughty list for not giving everyone a kiss goodbye.

If you want to stay in your pjs all day, do it. It you want to eat junk food instead of turkey roast, definitely do that! If your kids need time upstairs to recharge, let them. If you need to leave early because it is all too much, do so. Chances are other people want to do that as well and are just waiting for someone else to suggest it.

H has worn a bobble hat pretty much constantly for the last 5 days. If that’s what works, maybe we should all try it?

Have you got any extra tips that worked for you this year? Please share them in the comments.

 

Dear Morvern …

There has been a few defining dates in my adult life, usual stuff like getting married, having kids, moving house.

Then there are the not so normal ones. The day we got a diagnosis. The day we found help. And for me, the day the A Word aired.

From the moment we realised that there was something seriously different with H (I think in Sept 2012) to the date that program aired was a whirlwind of emotions, an awful lot of hard work. Lots of tears, of joy, of sadness and of anger. I gave it my all and it nearly broke me.

Then I saw myself on TV. I haven’t helped with any research with the A Word but it was like they had taken my diaries and written them into a script. No, I don’t have boy, we don’t live in the Lakes, I discovered H’s autism a lot later on in her life. But that mum, played by Morvern Christie, was me. The bitchiness, the bullying, the control freak. And seeing someone portray that side of things was extremely tough to watch .

Seeing it made me realise that I needed to do something. We were in a much better place with H, so I didn’t need to be letting it rule my life anymore. I didn’t need to spend hours every night scouring Pinterest, I didn’t need to be on parents’ forums anymore, because it was consuming me and I didn’t like what I saw on the screen.

So that’s when I decided to break free and do something for myself. I needed a project that wasn’t autism to focus on, so I started my business. I am in full on control of that, I am my own boss. It gives me things to focus my mind on after a bad day. It has helped with my self esteem after it took a severe battering in those dark days. It validates me, as a person. Not an autie mum (which I will always be), but as Kimberley, making her own way in the world again. My friend Louise and I coined the phrase #autiemumbitchandproud. That still stands and will forever be that person when my daughter needs me to be. But now I am more.

If that series hadn’t aired I dread to think where I’d be now. I would probably have isolated my friends, my marriage may have suffered, my relationship with my children most definitely would have.

So, Morvern, thank you. Thank you for bringing my demons to life, for showing the world what it is like to live this like and thank you for forcing me to change. I owe my new venture to you, I owe my sanity to you. I am forever grateful.

Love Kimberley

 

What’s the problem?

What is the problem? Is there a problem? What is a problem?

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Interesting question that. Is autism a problem? Is ADHD a problem? I don’t think they are. They have far more positives than negatives for H.

Sensory processing? Now that’s a different story all together. That’s a problem, a big problem. But why? Think about when your senses come into play and how they affect your day. I bet you get irritated by a certain sounds, screeching kids, people eating next to you, music that isn’t to your taste stuck on in the background. I bet you there are tastes that you don’t like, burnt toast, mushrooms, garlic? Do you get annoyed by certain textures, do you steer clear on wool or satin because you don’t like the feel of it on your skin. Do you cut labels out of your clothes? How about what you see? Do you wince at bright, artificial lights? or struggling to see in dim light gives you headaches? Do yucky smells make you feel sick? or put you off your food sometimes?

Now imagine all of those things are happening all at once. In fact I like to liken SPD to having the worst PMT on top of a banging hangover, multiplied by 10, every day, all day. Would that be a problem for you? I bet it would!!!

Sensory processing disorder is so undervalued as a barrier to learning and succeeding. It’s often just pigeon holed as something that can be alleviated by a quick 5 min OT session, or by giving someone a fiddle toy. But it’s not as easy as that. Below is a typical day for H, lets see how her SPD can be a problem.

6-6.30am Wake up, get dressed, have breakfast.It’s quiet at that time in the morning, only H and her dad so noise isn’t an issue. But she has to brush her hair (torture) and put on a scratchy uniform. She HAS to eat breakfast, even though food at that time in the morning makes her feel sick.

6.30- 7am Cuddle time with me. She likes this bit, sensory seeking H snuggles in bed with me with soft toys, until she thinks my is too hot and she does’t want to touch me any more.

7-7.30am S wakes up, this can go either way. If H is in a sensory seeking mood it gets a bit bonkers with loud, fun shouting and games, if she is sensory averse that day she hides in her room and we have to be careful what we do and say. You don’t get any warning about which it will be.

7.30 – 8.15 Going to school on the bus. Pushing, shoving, jeerky bus that can break down at any moment. A bus full of smelly teenagers talking loudly. Not the best start to the day!

8.15-3.15 School. Sweaty classrooms, noisy corridors full of pushing and shoving, carrying heavy bags. Classrooms that smell of different people and things, bright artificial lights, food in the canteen that she doesn’t like, Teachers that talk too loud, too quiet, too fast, too slow, a different language.

3.15 – 4pm Bus ride home. Ditto to above.

4pm -6pm Home, quiet time if possible. Recover from the day.

6-7pm  Dinner time. Sometimes she won’t eat her dinner because she doesn’t like the smell, or it looks funny. These are genuince concerns, not her behaving like a spoily brat. She likes watching the TV at dinner, but if you talk at the same time that can really irritate her as it is too much noise. If you clear the table while she is in the room she doesn’t like the sound of the cutlery and plates banging and scraping so that can put her off her food. That’s why it sometimes takes an hour to eat!

7-10pm Quiet time. Attempting to regulate everything from the day so she is calm enough to sleep!

 

The majority of the issues H has to deal with on a day to day problem is SPS (sensory processing disorder) not her autism or ADHD. Don’t get me wrong, they do present problems of their own, taking things literally, being rigid in her thinking, struggling to concentrate to name the major ones. But all of these could be dealt with a lot easier if SPD was not there. It can have a serious effect on her happiness, security, self esteem and her learning. Please take some time to understand this condition and learn how you can help the people around you that may have it.

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.