Monthly Archives: January 2015

I’ve hit BURNOUT!

I’ve been meaning to blog for a while. I’ve had lots of ideas for posts, but I just haven’t found the energy.

Today I’m making myself sit down and write one. And the only thing I can think about is how exhausted I feel. So I’m going to write a bit about that. And tell you some things about me. If I can stay focused long enough!

I haven’t mentioned it up until now but the Pickle is about to become a big brother! I’m 8 months pregnant. It’s been a long and emotional road. It’s taken a lot of patience, frustration and 2 rounds of IVF to get here. I never saw that little curveball coming either! We’d never had any problems making Pickle. Last year I had to put my body through a lot. I learned to give myself twice daily injections, I had to inject drugs that made me feel a bit crazy (my long suffering husband got shouted at a lot), I had to go under anesthetic on a number of occasions and had to go through some fairly unpleasant procedures. But we got there. And we’re having a little girl. And we’re thrilled. I know more than anyone how hard it is when you can’t have what you desperately want, and so I am very blessed and thankful for the position that we’re in.

Also, we recently bought a puppy for the Pickle. She’s a labrador crossed with a Newfoundland. And they’re massive dogs! So we’ve basically got a huge puppy with beautiful eyes, webbed feet and a naughty temperament. She is beautiful. She’s been really good for the Pickle (although she thinks he’s a puppy too!!). The Pickle loves her too. He says her name randomly in the car when I pick him up from nursery so I know that he’s thinking about her and he looks forward to seeing her. They play games together. He throws things for her and she runs after them. She doesn’t bombard him with words and questions and she has unconditional love and interest for him. She’s really helping him.

We knew when we bought the puppy that the timing was terrible for us! I was 4 months pregnant and dogs are hard work! Both my husband and I both had dogs growing up and we understand the level of commitment and work that a canine family member requires; especially when they’re playful, naughty puppies. I have spent the last 4 months cleaning up more poo and wee than I ever thought possible. There are rough patches on my knees from all the time I’ve spend kneeling on the kitchen floor! I have had to put so much mental energy into knowing where the dog is at all times, and always knowing where Pickle is at the same time! It’s been like looking after two babies who are in bigger bodies. Theyr’e both quite physically strong, neither of them listen to a word I say, sometimes it’s one being difficult, sometimes it’s the other, most often it is both, at the same time. Argh!!

Are they both playing well together? (not always!!) Is the puppy destroying something? (Pickle made some very rare artwork when he was 2 years old that always sat proudly on our fridge.. not anymore. The puppy got it). I literally cannot leave the puppy alone in a room for more than a minute! She is big enough already to jump up and get things on surfaces (no food on my kitchen is safe) and she chews everything she sees which is difficult as Pickle leaves toys everywhere. The Pickle likes to take everything from the puppy and has developed a habit of putting her toys in his mouth! (yuck) It’s been hard work. But worth it to see the Pickle bond with her. And when the baby comes, everything will change. But the puppy will still be Pickle’s friend. She won’t change. And I hope that will be a comfort for him during what will be a really challenging time of change for all of us.

Lots of people when they meet me ask if the Pickle is excited about the new baby. I’m pretty sure he has no idea whatsoever!! We’ve read a lovely ‘lift the flap’ book about mummy having a baby in her tummy and another one about being a big brother with buttons and noise, and the Pickle has learned the response when asked, ‘What’s in mummy’s tummy?’ he dutifully answer: “Baby!” but I don’t believe he has any real concept of what’s going on. So it’s really difficult to know how he’ll react, and it does worry me. But he always has the capacity to surprise me and I’m mostly remaining positive about it all 🙂

Whilst all this has been going on, we’ve also been organising the Pickles EHC plan for when he starts primary school in September. (eek!) That’s been hard work too. The other night, I received all the recent reports on Pickle made by his nursery, the Pre-school Specialist, the Educational Psycologist and his Speech & Language therapist. They were all lumped together, one report after the other. That was hard reading. It was 24 pages of all the bad stuff. About how ‘special needs’ my child actually is, how much help and support he’s going to need to do the basic things that all other kids do automatically, and what development level he is at. (It’s not nice reading that your 3 & a half year old is in some areas, the level of an 8 month old baby!)

When I read that report the other night, it made me sad. But something kind of snapped inside. I’ve been feeling so tired. I’m heavily pregnant, dealing with a crazy household where everybody constantly wants things from me but nobody listens to what I want them to do, I have a to-do list that never seems to get any smaller, getting out of the door, into the car and into town for something… actually, just walking up the bloody stairs feels exhausting! And I’ve been feeling like things are spiralling out of control whilst I try desperately to appear normal. I can’t remember dates, times, where I’m supposed to be or what somebody said to me five minutes ago. Everytime I put something down, I lose it. I’ve become that person who is always late or rearranging to meet up. I’m scared things won’t be ready for the baby and there’s so little time left to sort it out. But I don’t have the energy to sort the things that need sorting. I don’t know how the baby is going to fit into this crazy existance that is already so full to the brim of people needing me. I’m just keeping going…. keeping going…. keeping going….. then I read the report. And I felt sad. Then I went and looked at the Pickle asleep in bed, my little boy, And suddenly, something just snapped and I was so exhausted.

So yesterday afternoon, after screaming at the dog and the Pickle for playing too roughly and physically seperating them (which again makes me exhausted), I put the dog in the crate, and just went upstairs and put myself to bed in the middle of the afternoon. It was like I couldn’t do anything anymore. I was supposed to write a shopping list and make a chicken pie, but I couldn’t face it. Time suddenly stopped and my thoughts were fuzzy.

The Pickle thought it was a great game! He came and got into bed with me, got his nightime turtle and put it on, closed the curtains, took his trousers off, then started laughing and smacking me round the head because I was lying down being funny! At least he was where I could keep an eye on him, so I just lay there, and thought how I couldn’t do this anyomore. I thought about selling the dog. I felt like such a faliure because I clearly couldn’t cope and more than anything, I felt really scared about the future, and cursing myself for taking on too much, soon to be a new baby as well! I felt like such an idiot. A product of my own decisions, lying in bed at 4pm being hit round the head by my autistic toddler with a crazy puppy barking non-stop downstairs and a baby arriving in weeks, and it’s all been my decisions, and I’m not coping.

So that was yesterday, I’m still exhausted, but I’m feeling a bit happier today. But I realised that yesterday I totally burned out. I couldn’t keep going. I kind of knew it was coming, but I didn’t realise how exhausted I really was. And the difficult thing is there’s no easy solutions to fix it! The Pickle will still be the Pickle, the puppy will still be the puppy, the baby is coming soon no matter what! And I do feel like a total and utter flake and a faliure at the moment. But I’m happy for everything I have. I’m blessed with an amazing, funny, intelligent little boy, and beautiful puppy who always gives me love, even when I’ve just shouted at her, a husband who although he despairs of me most of the time, but will always love me, be there for me and try to help when he can, and there’s a beautiful new little baby who’s about to change our lives again forever and who we fought so hard to bring into our lives. When I allow myself too, I feel her kick and I smile for the love that’s about to overwhelm me all over again. So I guess things can’t be all bad.

And on that note, I’ve recently had this made… it represents my little family. The ‘husband’ heart is for my other half (obviously!) The autism heart is for the Pickle, the pink flower is for my unborn daughter, and the ying yang is for me!

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So yeah… that’s why the blog posts have been a bit non-existant lately! And I know this one is a bit all over the place. But it’s something at least and perhaps you’ve learned a little more about me. I hope you’re all doing ok with your own crazy lives, thanks for reading my blog so far and I hope you keep reading! It’s really nice to get everyones comments and I always read your updates too. Even if I’ve been too tired to reply lately 😉

I’m off to make that chicken pie now… x

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5 things that made me realise my child was ‘different’

Here’s a list of 5 memories that really stand out as moments I felt “something’s definitely not right here” with the Pickle. Things that I couldn’t explain.

They’re from before I could get any friends, family or professionals to listen to me, and before the word autism had entered my vocabulary.

1) The day we bought a new toy box and Pickle spent over 2 hours opening & closing the lid repeatedly.

He would usually look at toys for a very short time before becoming restless, but this was like he was in a trance. It was weird. He still obsesses over doors, lids and anything that opens/closes and uses them for sensory feedback when he’s anxious.

2) When none of the Supernanny techniques worked.

I couldn’t get the Pickle to pay any attention to me when telling him ‘no’, ‘stop’, ‘wait’ etc so I bought ‘Supernanny – confident toddler care’ as I’ve always thought she had fail proof methods… and when I read it, not a single damn thing worked!! F**k you Supernanny! I always thought you would be able to help! 😉

3) when I took the Pickle to see ‘In the night garden live’ with another little girl the same age.

I got more attention and love from her sitting on my lap for 30 seconds than 45 minutes of trying to keep the Pickle in the same place and stopping him from running out. I kept thinking “why is going anywhere so difficult with him? Is it just me?”

4) The day I realised that discipline didn’t work. Ever.

It didn’t matter how much I encouraged, coaxed, pleaded or yelled at him, the Pickle just didn’t get it. One day I got so upset, frustrated and at the end of my tether that I screamed blue murder at him. He didn’t bat an eyelid.

I also asked other people at this point how they got their child to listen to them, I remember one person telling me “make sure he looks you in the eye when you’re talking to him…”

“Erm… I can’t!!!! It doesn’t work! It’s impossible!!! I can’t control his eyeballs! I can’t control ANYTHING with him!! Why doesn’t this happen to anyone else? I must such a bad parent that I can’t even get my child to listen or look at me!”

5) When all of the other children were making play doh and I couldn’t stop the Pickle eating it. He was 2 and a half years old. And the younger ones weren’t eating it…

It shocks me even to this day when I tell off our Labrador puppy, or I say no to someone’s child, and they actually get upset! I reached a point where it felt nobody took any notice of me and I was pretty redundant as a parent figure so it’s always a shock when I actually get a reaction 😉

Thanks for reading!

This is Autism, the hidden disability

If you want to see what living with autism can be like on a daily basis, with no sugar coating, this blog post is a very sobering, well written and honest account of what some families deal with every single day of their lives.

About a boy, a family and Autism

I started this blog as I wanted to create a positive space to show how far we have come, don’t get me wrong my magical wee man has moved mountains to get to where we are today, in this post I am going to be 100% honest with the world about the complete living hell, living with Autism is not just for Lachlan but for his brother and sister and us his parents. This post has been bubbling and building in me for months, I am at breaking point now, exhausted, broken and deeply hurt, this is the result of the constant battle against ignorant people, a system that doesn’t work and an uncaring world.

Every thoughtless coment, wounds.

I now fully understand what other parents meant when they referred to Autism as the hidden disability.

Do you have any idea how much my little boy suffers?

Do you have…

View original post 2,427 more words

Don’t listen to them…

There are a few things in life that bug the hell out of me. One of those things is a judgemental attitude (the bitchy kind) and the other one is when people talk a load of bullshit (bitchy or well intended).

I try to stay well away from anyone who makes me feel bad about myself or inadequate, I also keep a polite distance from those who are generally unhelpful. This is for both our benefit. When I was growing up and easily impressionable, I tolerated a lot of bullshit from a variety of different people who were either friends by default (in the group I was in) or were quite damaged individuals. I didn’t like being at home growing up so I would always tolerate the things that were said and done to me because that seemed as good as life was going to get at the time. Now I am an adult, I have a strong philosophy that if somebody is not good for me, I cut them out of my life. And I would expect exactly the same from other people. Life’s too short.

I realise that sounds harsh, and I am actually a very nice to know, loyal friend to have, but when you’ve had the experiences I have, and met some of the slightly unhinged people I’ve come across, you have to make certain changes to make sure that negativity stays out of your life! I’m talking about people who suck away your time and your energy. Emotional vampires. The people who do all the taking, and no giving. The ones who listen but don’t hear you. The ones who cannot see past their own agenda.

When the Pickle received his first diagnosis earlier this year of ‘Global Developmental Delay’ (GDD), it also fell at a time where he was getting past the point of fitting in with other mainstream children and activities we were expected to do at clubs and playgroups (everything was becoming about teamwork, instruction and taking turns) so after trying to power through with him doing normal things, and finding it harder and harder, I decided one day to put an SOS message out on my local mums Facebook page to see if anyone else was going through what I was with their child. I was sad and lonely. Nobody understood what was happening to the Pickle and me. Everyone just kept saying that the Pickle was fine and he would catch up and that their children did this too (usually followed by an example about their child that held little relevance to what I had just opened up about).

So anyway… I sent out an SOS. I was a bit terrified as it was the first time I had publicly declared to the world that my son had additional needs, but I was so miserable and judging by the NHS waiting list for the Pickles CDAC assessment (for autism) there MUST be others living locally out there too! Perhaps even feeling as miserable and isolated as I was. So where were they all?!

Two things happened from that post… Firstly, I slowly started to meet other mums including one that’s become a very good friend to me in a very short space of time. I found ladies who understood the frustration, the confusion, the sadness, the acceptance/denial, the frustrations with the NHS and the fears of sending their child to mainstream school in the same way I did. This really opened up a door for me and led to more connections with people, access to an additional needs playgroup and I finally felt validated and listened too when I spoke about the Pickle and understood by others. After a very long eighteen months, I slowly began to heal, smile, laugh and enjoy taking my son out again.

Secondly after writing that scary Facebook post, I gained the confidence to start looking for online support groups. There’s five that I have joined on Facebook, two for GDD (Global Developmental Delay) and three for ASD (autism spectrum disorder).

These groups are amazing as you can access support from a community of parents who have all been there. Questions no matter how big or small that you can’t find the answer too on your own can be posted and suddenly you have a wealth of experience from the people who experienced it a hundred times over and bought the t-shirt. I remember when the Pickle started having massive, major meltdowns and I found it very hard to cope with them. Anyone else would cheerfully tell me how their child would throw tantrums too and the Pickle was no different and not to worry (followed by a story), but any parent of an SN child knows it’s not the same. And I found the support and the help I needed to learn to cope with them through these groups. They’re great. I wouldn’t be without them…

BUT… The more groups I’ve joined, the more stories that come up on my newsfeed, and the more experience I’ve had, and the rose tinted glasses have come off and I’ve started to notice that even SN parents fall into two groups.

You get the supportive parents. The ones who don’t judge you for the things you tell them. The ones who will help you to find ways to cope when you admit that you’re not in a good place. The ones who will go out of their way to find you links, resources or put you in contact with people that will make your life easier. The ones who will gently talk you through something when perhaps you’re not seeing things as clearly as you should and you need a little guidance.

Then here comes the judgemental brigade! They bulldoze their way into your posts and they seem to be growing in number! These are the parents who when you say you wish that things were different, they jump on your post to say how they never feel that way, your child is a gift from God, you’re never given more than you can cope with, and that they NEVER feel the way that you do and nor should you. Because they all love their lives and their children. These unhelpful comments are always made on the most desperate posts by poor mums who really need a shoulder to cry on and a little understanding. Not judgement and imposed feelings of inadequacy by others because they’re not able to muster up these feelings of effortless strength. It’s self serving, self prophesied bullshit and it makes me angry seeing people pushing their own agendas to make themselves feel big, strong and important whilst making the mum who posted feel inadequate when they’re already at rock bottom. I’ve been there. It’s not a nice feeling.

We don’t ask to have children with additional needs, I don’t think any parent would choose this. Would you swap your child for one with autism? Of COURSE we love our children, we’re immensely proud of the steps and progress they make, we fight for them to the ends of the earth and we love them to the moon and back; but we all have very difficult days/weeks/months, especially in the early days when we’re still coming to terms with diagnosis’s and realisation of the lives that we did not ask for or expect. And when we’re feeling that depressed, the last thing that’s needed is a ‘know it all’ perfect parent who wants to tell you how amazing they are and how they never feel how you do. Perhaps this attitude is their way of coping and that works for them, and that’s fine! But don’t bring others down with it. It’s a horrible thing to do.

Also these judgemental parents will pick up on things you write in your posts and jump on you to tell you that your parenting your child incorrectly. This can include parenting methods (time outs, smacking, diet, TV watching etc, types of therapy you use for your child. You get the idea.) And these posts can get quite nasty. And you end up with two camps all liking their spokespersons comments and then admin have to step in and ask everyone to stop arguing and start being a supportive group whilst some poor mother who dared to post something looking for advice feels attacked, vilified and the subject of a witch hunt. It’s very uncomfortable to watch.

A few days ago, I saw a post that said “I have always treated my children the same, and my GDD child is doing really well, unlike my friend who also has a GDD child and she treats them differently to her other kids, and they’re years behind! Anyone else found this? ”

What a stupid woman. Right there, she has put down any other mother who is coping with a GDD child, who has to make adjustments or changes because of their delays and adjusted age. She has implied that if you treat your child differently to another child with a normal developmental age, your child will not thrive (unlike hers of course!) and she’s also not much of a friend to the other lady mentioned in the post if she’s saying mean and hurtful things about her children like that in such a flippant way. I wonder if people actually realise the damage that they can do.

So my point is that everywhere you go in life, even when you find places and people who can give you the help and support that you need, and you can help others, you will always ALWAYS get the ones who have their own agendas. The judgemental brigade. The dangerous ones. I feel so very very sad for the parents who can’t spot them a mile off and think there’s merit in the one sided ‘advice’ that they dish out on a poison spoon and feel bad about themselves as a result.

We are ALL brilliant parents. We are dealing with a huge curveball that life threw rudely at us and we never saw it coming. I am not afraid to say it. Sometimes it’s hard to be strong. Sometimes we feel depressed and sad and lonely and we wish things were different with our kids. Sometimes life sucks. There are many amazing moments, but there are also very sad ones too. And NOBODY has the right to tell you that your feelings are wrong or invalid. NOBODY is doing a better job than you are with their child. We are all on our own personal journey and in different places with it. If we could all just stick together and join ‘team supportive’ perhaps we could all achieve a lot more together, not just for our beautiful children, but for us as individuals, as mums, as carers, dieticians, therapists and spokespeople for our children. We are human and WE need support too.

Don’t ever settle for anybody giving you anything less.

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