Category Archives: Additional Needs

The 7am Meltdown

You probably know it, you’ve been there. The first wake up call was around 5am, the Pickle wandered in to announce his day had started, but this was one of the mornings he went back to his bedroom. Thank goodness I thought, I can sleep again. At 7am, the meltdown began.

I’m not too sure exactly how it started, I think he knocked over his marble run. And then we couldn’t get it right. Then nothing was right, and it felt like nothing would ever be right again as the screams of a crazed banshee ran out through our house whilst two bleary eyed, tired parents tried to fix the situation; knowing full well that we could never fix the situation. Continue reading

Advertisements

It’s time for the sun to shine!

Hello! Long time! To be honest, it’s been a real drag to sit down and write this post after the last few, but I think I’m ready now!

My last couple of posts came from such a sad, tired place. I’ve been struggling massively over the past six months, with the diagnosis, with family life and with pregnancy. And I’ve had such low energy levels that has made it difficult to move. I’ve been depressed. I’d stopped going out. I wasn’t seeing my friends. I didn’t want to go anywhere, do anything. I could barely crack a smile. I felt really lonely and isolated.

Things are a bit better now. I’ve been having some therapy for my anxiety problems which has helped me to evaluate a few things and get a better relationship with my husband, so I feel more supported; and towards the end of my pregnancy, I’ve also got a little bit more energy (amazingly!) which has made life more enjoyable. I’m feeling motivated. The puppy has stopped using the living room carpet to relieve herself, and has calmed down a lot. All of this stuff has helped massively.

And the Pickle… well he’s doing really well! He played his first game of ‘What’s the time Mr Wolf’ at nursery the other day! They showed me photos. He was standing confidently right in the middle of the photo holding hands with all the other children and smiling. He’s become really good at taking turns, and for the first time a couple of weeks ago, I said “I love you Pickle” and instead of repeating it back to me word for word, he said “I love you mummy”

The diagnosis was harder than I thought it would be. I felt it wouldn’t change anything as I had already figured out that he had autism and I thought having it written down on paper would just give him any extra support that he needed and would encourage others to take things more seriously when I explained his needs. But it has been like a giant rollercoaster. Good days, bad days, terrible days, selfish days, easy days, days that were good and then went bad at the last hour, days that felt they would never end. I never really knew what kind of day was coming. And it got on top of me. It really did. But I’m feeling stronger now.

So I took him out at the weekend, he really likes trains. So we took him on London Underground to a few places, and got the cable car from Emirates to the O2. Sounds like a normal thing to do with your child, tame almost. But it was a big deal for me as we’ve been hiding away for months and I get scared taking him out. But here we are! And here he is:

alfie 02 alfie 022

Something that has really not helped with my anxiety over the past few months, is there have been a couple of incidents where we have been out on playdates or at softplay centres, and other children have gotten frustrated with him and have hurt him. (one scratched his face, the other pushed him and tried to strangle him!) He didn’t seem to mind too much… but it really upsets me. And it makes me really scared and angry. Other mums know their children will run up to them and tell them when something’s happened, but if I hadn’t suddenly got up to check and caught that child doing that to my son, I would never have known. How many things do I miss? I can’t be with him all the time when he’s playing. And all the other mums are “chat chat chatting” and drinking their coffee, knowing that their children will come and tell them if there’s a problem, whilst I’m trying to chat and drink coffee and appear normal, but my anxiety levels are steaming, not knowing if the Pickle is ok, if he’s stimming too much and bumping into other children, if he’s getting himself into a situation that he has no idea is even happening, let alone be able to deal with. Then he can’t even come and tell me afterwards.

He’s not ill, there’s nothing wrong with him, he’s got a different processing system to the rest of us. And he has to live in our world. It’s overwhelming, and confusing. He is the one that needs all the love, help and support he can get. He’s so small. He can’t help having autism. And I’m his mummy.

I promised him last week that no matter what, from now on, we will stick together. I won’t be absent anymore. I will be the Pickle’s spokesperson whilst he can’t speak for himself. I will back him all the way and be his voice. I will educate people around him about his differences and show them how clever he is and how far he has come.

I will tell every day him how special he is and how much I love him. Even more so when he is tired, angry and confused and being difficult to understand. I will always be a firm (but hopefully fair) mum because that is who I am, but ultimately, I want him to think of me as somebody he can go too when he needs help, advice or is simply overwhelmed and wants a familiar face. He can’t see me falling apart anymore, he just can’t. This is his life. It’s too important to waste.

And in a matter of days, he’ll suddenly have a new little sister in his life and everything will be thrown into a new type of chaos. But you know what, I think we’ll all be ok. Because we all going to stick together.

B25dFhACIAAneJ8

Autistic? Or Naughty?

The Pickle is growing up. He’s a very handsome young man! I look at him sometimes and wonder how I managed to half create such a good looking little guy.

The older he gets however, it’s becoming MUCH harder…. it’s hard to control what’s going on and what he’s getting away with everyday. He’s getting so big now. (he’ll be 4 in July). It’s like having a little person with a very young mind, in an older child’s body. And I’m quite fat and pregnant at the moment.

On a bad day, he screams at me and hits me in the face when he’s frustrated. He fights me on the stairs (one day we will both fall down them for sure and how will anyone get in to save us? The house is locked up to stop the Pickle getting out!), he jumps on me (and my baby bump) with no idea that he can cause any harm, and the hardest one of all…. he does not listen to a word I say.

He doesn’t stop, wait, listen or eat when I tell him too. I can’t get him to sit at the table for more than 10 seconds. I have to bribe him with chocolate, biscuits and ipads and all the things you’re not supposed to give to your child when you want them to do something for you! Most days, I fell totally and utterly powerless in my own home. I’m redundant as a mother. Nothing I do makes any difference to what he’s doing. Add to that, a crazy puppy (who also doesn’t listen) and 8 month pregnancy exhaustion, I have been known to just burst into tears randomly and in front of the Pickle. Another terrible thing to do with he’s the child and I’m the adult. And perhaps it’s a good thing, but the Pickle can’t actually comprehend that either. Because he doesn’t understand that other people have feelings and emotions. He just looks at my snotty, red face in curiosity and will sometimes laugh or copy me.

Yesterday somebody said an innocent comment to me that I secretly took quite hard. We met for some lunch and she asked me if the Pickle was a good eater. I started to explain that he only eats dry food, usually bland colours, and that sometimes there were exceptions to the rules, but he hadn’t let a vegetable pass his lips in over a year and I was trying to fix that but it’s difficult to keep offering foods when you know it will be rejected and you’re just throwing money into the bin. She said with a smile ‘wow he’s really got one over on you hasn’t he?’ I laughed and said ‘yeah’.

But it totally hit a nerve, because I feel like he really HAS got one over on me. A 3 year old child that has total control over his 32 year old mother. A 3 year old that laughs in my face when I tell him off or try to stop him from destroying something. A 3 year old that never, ever, ever, EVER listens to me.

I find that really hard.

And I keep telling myself, it’s just his autism. It’s just his autism. He doesn’t understand. But I do wonder sometimes, his behaviour is getting worse. At what point, is it autism, and when is it naughty? How do I tell the difference? Are the two mixed in together sometimes? And shouldn’t I know as his mum when it’s down to social communication issues, or when he’s just being a 3 year old who doesn’t want to be told what to do?

He also seems to save up all the really challenging behaviours just for me. When I take him out, I can’t get him to sit anywhere for long (coffee meet ups are becoming a thing of the past) but he is generally very well behaved when he’s in public. I think he’s shy when he’s out. He barely speaks, he just holds my hand and walks to wherever I’m going, and when we get there, he’ll go find a door to open and close or a car to run back and forth for an hour until it’s time to go again. Then we’ll get home and he’ll become loud, stimmy, thumpy and door slammy. Or he’ll shout at me and I won’t be able to understand what he’s saying and it frustrates him even more and makes me sad.

At the weekend when my husband is around, I’ve been known to actually hide! I’ll lock myself in the bathroom or slip quietly off to the bedroom just to sit with my eyes closed for a while. I’ve been dealing with the Pickle’s challenging behaviour all week, and I take the occasional opportunity to run away from it sometimes. I probably shouldn’t…. but my husband does deal with him very well and he’s not as worn down as me. He gets to sit in an adult environment for 40+ hours a week dealing with a whole other type of high pressure. (again this doesn’t make hiding right, but it does mean I know his tolerance is higher than mine when I just need a break!).

And the humbling thing is that, I know that I’m lucky with the Pickle. Compared to some of the things I’ve read about, or seen for myself, he really isn’t that bad. He is a sweet natured little boy who doesn’t meltdown every day, or have any major behavioural issues with other children. If you can get past the door opening/closing obsession, the slamming, the fixations and the routines, he is very easy to get on with and to love. So if I’m finding his older preschool personality so difficult to cope with in the afternoons, how on earth do other parents cope with some of the things I hear about?! I take my hat off to all of you. You are all bloody amazing!

In the meantime, Pickle is going to preschool 4 mornings a week, and I can have some quiet time then to get on with things. Oh my goodness, I love my quiet time. Then it’s off to pick up the Pickle and start the afternoon hometime fun all over again! But is it autism? Or is it sometimes naughty?

And will I learn to tell the difference and be able to parent my son properly before it’s too late?

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!

IMG_4595

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

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.

/home/wpcom/public_html/wp-content/blogs.dir/28b/79668851/files/2015/01/img_4250.jpg

/home/wpcom/public_html/wp-content/blogs.dir/28b/79668851/files/2015/01/img_4251.jpg

A Pickle Christmas tale

Excuse me everyone! Never ever prejudge the Pickle!

Well I have to admit I was a little apprehensive, but the Pickle did good this Christmas! When I look back to the weeks leading up to the big day, the anxiety I was feeling after last year’s disaster was huge. It made me a little crazy throughout December, but yet again, the Pickle has shown me not to make assumptions about what he can’t or won’t do.

On Christmas eve, we went down to the Village Green with our puppy and the Pickle to sing carols. We had both toddler and puppy on a lead! Probably the puppy was the easier to hold on to, but Pickle loved it. He became a bit over excited at ‘Rudolph the Red nosed Reindeer’ and after that the stimming, spinning and trying to lie on the muddy grass became a little too difficult for us to handle, but instead of feeling frustrated and wishing things were different, I just felt pleased he had enjoyed 4 carols and he obviously really likes that particular one. My husband and I realised, and accepted that it was probably a good time to head back!

Before the Pickle went to bed, we showed him his empty stocking and hung it up on the fireplace. Then we took it down, and showed him again. Then we encouraged him to do it. When it went up for the third time, we clapped and cheered. On Christmas morning, when we showed the Pickle his stocking filled with chocolate and toys, he was delighted! We all sat in bed together whilst he had a look through. He ate chocolate for breakfast and really liked a squidgy stress ball that was inside.

I bought the Pickle an elf costume again this year. If you read my other post about Christmas you’ll see I did this for his first one when I was full of ‘new mum’ hope and I had no idea that he was ASD. I thought hey, lets do it again. And he was very pleased! Especially with the button on the front that played Jingle Bells over and over and over. Still, any parent of an ASD child is totally immune to repetitive, annoying noise! 😉

We opened some presents as a family, and the Pickle opened three! Granted, they weren’t all HIS presents, he stole some of daddies, but he opened one for him with a backpack from us. Here he is sporting his new backpack in his elf costume:

Pickle is very pleased with his new backpack. He put Daddy's new socks in to it and carried them around.

Pickle is very pleased with his new backpack. He put Daddy’s new socks in to it and carried them around.

He did lose interest, and there’s still a little pile for him under the Christmas tree, but that’s ok. He can open them when he’s ready. Maybe they can be New Years Eve presents!

When we visited family, it was the usual hustle, bustle and busyness. Last year, I had been so desperate to keep everyone happy by forcing the Pickle to open their many presents and look happy at what he’d received, I needed him to stay focused, and eat his Christmas dinner and perform like a child should. This year was different. I wanted to make sure that the Pickle was happy and ok, and if that meant he wanted time out, or he needed the iPad rather than presents, or if he didn’t want to be with everyone, then so be it. The phrase ‘short bursts’ kept going around in my head. It’s so overwhelming for a child with ASD to have your routine changed, be surrounded by lots people doing lots of different things, have lots of different noises, and more than one person talking at the same time. And there were a few times that he switched off from everyone, and I sat him down with the iPad, and just let him be. I also asked others to leave him alone as well if I felt it was necessary.

He was so tired by the end of the day, I know this because he sat down and watched the Snowman from beginning to end, without trying to rewind the opening credits over and over!! And that in itself was lovely because I got to cuddle him and watch it with him.

It was a really, really lovely day. And I am so proud of the Pickle and how far he has come since last Christmas. He coped so well and he will never ever stop amazing me and showing me that he is always capable of learning and progressing and coping with this crazy world around him!

I believe that another very important change this year, came from myself. This year was different to previous years. We have a diagnosis and I am better educated about ASD, sensory issues and the difficulties that our ASD children face. It’s incredible how easy things actually became when I changed my expectations, thought process and my attitude. When I stopped wanting the Pickle to conform to what I wanted, to what others expected, when I stopped wishing things were different and letting go of the set ideals I had in my mind about how Christmas should be. I tried really hard this year to see the world through his eyes, and kept repeating the mantra that “It is what it is”. We are all very blessed to have each other.

Well done Pickle! Keep showing us what life is all about! You will always be my life teacher and I forever your student 😀

in the middle

Leaps & Bounds & Ups & Downs

The Pickle’s development has always been a major factor of his autism. It was the first sign to me that something was different.

For example, when the Pickle was born, and up until he was a year old, he hit his developmental milestones without any issues. He smiled, he sat up, he learned to use his hands, started to crawl, even babbled! Then when he turned 1, it changed. He wasn’t developing properly any more. He was barely learning to speak. And I kept waiting and waiting, but the progress was slow. Painfully slow. And it was odd. He could say mummy, but he didn’t say it to me. It didn’t seem to have any relevance in our relationship. He never called out to me in the morning when he woke in his cot. Mummy was just a word with no meaning.

The Pickle can go for a very long time without making any noticeable developments at all. Then all of a sudden, he starts to do new things! Usually three or four new things! It’s always nothing for ages, then suddenly an unexpected leap with something! And everyone is so amazed and impressed and says how things are changing and looking up. I get to experience a million proud mummy moments all at once and I feel high! Delirious. I’m walking on clouds. I exhuberate happiness and confidence in everything I do. I am so proud and in awe of my son that I could burst. I have energy, I do more. I am more.

Then over time, things go back to “normal”. The new skills become normal. And the gaps start to show again. There is a long stretch of time where nothing really happens. Of course there’s speech & language therapy, constant daily repetitive teaching, intensive interaction, but it’s all a bit…. slow.

I had a really bad couple of weeks recently. You can read about it here. I’m coming out the other side and I’ve decided to do some soul-searching and reflection. What I’ve noticed is that my mood seems to reflect the Pickle’s developmental stages.

After a month or so of feeling like we’ve achieved very little, my mood starts to drop. I begin to gradually lose my energy and focus. Things upset me more easily. I feel that nobody understands. I become anxious, irritable, sad, impatient. After a few months, my emotions start to overwhelm me. I cry. I think I’m depressed. I think I’m a bad mum. I wonder if I should get some help. Things feel like they’ll never get better. It creeps up on me and then bang! I’m there. I’m everything I don’t want to be.

Then suddenly we have a Pinecone moment!

And I’m walking on clouds again.

Some further reflection now…. I don’t think this pattern of behaviour is acceptable, healthy or right for me and my son. I’ve always been very up and down with my moods, I’ve been depressed in the past. However that doesn’t make it ok. Making the decision to become a mother meant it stopped being all about me, and I need to find the strength to take control. I’m going to try so hard to break this pattern and I think the first step is recognising and understanding it. The Pickle needs me to be positive and strong for him, not a fair-weather mummy who is only happy when he is doing well. I love him SO much. He is my life. He needs to know that I will always be there for him to lean on, no matter what stage he is at or what he is doing. I am the person he solely relies on to help him make sense of the world. I have a huge responsibility to him that goes way beyond my hormones and personal feelings.

So I’m going to start working on this. Today. Now. Because just by being my son, the Pickle has taught me so much about life. About patience, expectations and endless possibilites. About finding joy and love in the strangest of places. About being a human being. And I am a much better person for knowing him. He has bad days and bad moods, but they are based on a frustration that comes from not being able to understand or cope with the world he lives in. He never judges the progress I’m making as his mother, so why am I judging him? He’s just a child. I am an adult.

By the way… my dream of two years ago that felt so unachievable, came true. The Pickle now knows that I am his Mummy. He comes to his bedroom door in the morning and calls out to me. “Hey-yo Mummy. Hey-yo Mummy”. He says my name repeatedly to get my attention, or if I’m not there and he’s missing me. It’s not just a word anymore, it’s become true. And it’s time for me to start giving it the justification it deserves and step up to the job I’ve been given. Throughout all the leaps & bounds and ups & downs. I will take each day at a time, and I will get there. I owe it to him.

Dedicated to Pickle, love from your Mummy. x

10868015_10152715675679425_4754607571744246623_n 4ab498b271f9e9064a8ee6afad68cc7c