Monthly Archives: December 2014

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

Advertisements

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

Pinecone

Well isn’t it the way, when you’re feeling sad, that all of a sudden, your child surprises you and makes you feel so damn proud!

Firstly, this morning when driving the Pickle to preschool, George Ezra – Budapest was playing on the radio as I reversed out of the driveway, and I’m singing along going: “You… ooooooh! You ooooooh!” and the Pickle is looking really cute in his woolly bobble hat, and as the car is reversing, he’s looking at me straight in the eye with a big smile and he starts to laugh! We spend the whole ten minute journey to nursery both giggling and singing “You… oooooooh! You oooooooh! I’d leave it all”. Even when the song was over. It was a lovely little moment. I got to connect with my son.

Then when I’m dropping him off, I’m chatting to his key worker, and suddenly I hear “Oh! Look at Pickle…” so I look over where he’s sat himself down at the table with the other children ready for breakfast, and he’s stood up and started handing out breakfast bowls to all the children (with a very serious look on his face!) Then he takes the spoons and puts one in each childs bowl! Proud mummy moment.

Then when I went to pick him up after lunch, I’m normally told that he’s been a bit over excited and keeps running out of the doors, or they’ve tried such and such method to keep him still, and it hasn’t worked… but today, his key worker tells me that he’s had a brilliant morning!! (!!!)
He hasn’t been opening and closing the door. He really enjoyed Zumba (so much so that he took part in 2 sessions) and was full of smiles and dancing. Then… at lunchtime, he ate most of his roast dinner, including his carrots!! I haven’t told you about the Pickles food issues yet, that’s a whole other post. But believe me, this is a HUGE deal!!

That would have been more than enough for me, but it goes on! I took him to his playgroup which is for kids with additional needs. Whilst he’s there, he sits on the mat with the Duplo, and builds a big tower! The Pickle never builds creatively with lego unless he has an adult telling him which brick to place, piece by piece. He never puts together train tracks or jigsaw puzzles either, so again, this is a huge deal!! He’s just sitting there on his own creating a duplo tower! I’m in shock. Here’s a picture of it. I know his arm is covering most of it, but take it from me, it was nice and tall! (And perfectly formed. No bits sticking out anywhere… very Pickle!)

IMG_3699

Another child comes along and starts to put her own bricks on his tower (and they are not perfectly formed). The Pickle not only allows her to enter his game but with a little guidance from myself, he accepts her ‘help’ and even takes turns with her!!! Amazing.

Then… for the grand finale, he sits down at the arts and crafts table, for more than 30 seconds, and with a little guidance, he makes a beautiful, glittery pine cone that we can hang on the Christmas tree this year!

IMG_3698

Isn’t it fab! And when I say help, the pine cone was handed to him with glue on it, and the Pickle was handed the stuff and shown on another pine cone what to do, but there was no ‘hand over hand’ or help at all! He followed instruction! And he made something beautiful, and individual, and creative, and his own.

It’s been a wonderful reminder of just how clever my little boy can be when he finds it in himself to engage with those around him and focus on what he’s doing. It gives me hope for the future. If we can find a way to support him and help him to sit still, to listen and engage with people, imagine what he could achieve! It’s all in there and he has so much potential, we just have to help him to bring it out into the world.

That pinecone is now sitting in the kitchen waiting to be hung on the Christmas tree. It is a symbol of everything that is possible. Although the glitter will eventually fall off and the stalks will break, the message is here to stay.

Thank you for my beautiful pinecone, my lovely Picklehead Wigglebum! I love you so much x

IMG_3704

I have a secret. I’m a bad autism mum.

Can I tell you a secret?… It’s a really big one. I’m not proud of it.

The thing is, I’ve been breaking some rules lately. In fact I’ve been breaking all the rules. If there was a judge and a jury for the rules, I would be put away for a very long time. I’ve been a terrible autism mum.

There are a few unspoken no-no’s about having a child with ASD. The first and most important rule, is that you never EVER wish your child was different. Because your child is special, regardless of any additional needs they may have. No matter what, you never wish your child was different. In fact, they need even more love and understanding than most, and if they can’t get that from their parents, then what hope is there? What kind of parent does that.

Well, me. I’ve broken this rule. I’ve looked at the Pickle this week, and I’ve cried tears of selfish and miserable sadness, like the world has fallen apart and can never be fixed. I looked at him, and I wished that he was different. That he was ‘normal’. I’ve wished that I could just have a conversation with him. That he would turn around when I called his name, react like he cared when I scold him, come to me for a cuddle, tell me what he likes, what he doesn’t like, tell me that he loves me. I’ve wished that he wouldn’t make those weird noises and dribble all over his hands and face because he’s stimming. I’ve wished he would stop opening and shutting doors over and over until he breaks them. I’ve wished he didn’t have that rash all over his face from stimming, or still wear nappies at 3 and a half years old. I’ve wished that when I spoke to him, he would look me in the eye and give me a coherent answer. I’ve wished that I could send him to school next year without being terrified what will happen to him. That I could take him out for the day without suffering huge anxiety because I’m so scared of what would happen if he ever got lost. I sometimes have panic attacks in crowded places with him, and we have to go home.

It gets worse… I’ve also broken another massive rule…

I’ve become jealous of other people and their lives. I’ve wanted their life, more than I’ve wanted my own. I’ve felt cheated. I’ve felt angry with other parents when they tell me their worries about their own children. I’ve felt isolated in a room full of people, because they hear me, but they don’t understand. I’ve looked at their children, and I’ve silently grieved for what they are, for what my Pickle will never be. For the mother that I thought I would be and the life I assumed I’d have. I’ve distanced and isolated myself from good friends, because being around them and their lives, just makes me feel sad about my own.

And now I’ve broken a third, very important rule. I’ve admitted it. For goodness sake autism mums! If you feel this way, don’t ever admit it! Act like you’re strong, even when you’re not. Well now I’ve gone and done the opposite of everything I am supposed to do, and I will be judged for it. I know I’m letting my son and my family down, and I’m genuinely sorry to everyone who’s relying on me, for being so weak, most of all, my beautiful, unique little boy. But I am wise enough also, to know that this sadness won’t last. I will again, reach a point where things will start to look up, when I can feel the joy of the small of the small and wonderful steps and progress that the Pickle makes. When I can feel empowered and start feeling strong about life again. Like I felt when I told everyone about his diagnosis and I said I would never ever change him. But for now, I’m a terrible autism mum.

1534312_634929613282425_1806297993236032834_n