Autism

As long it it’s healthy?

21/06/2015 by MrsSavageAngel Leave a Comment

Hands up any of you who, when pregnant were asked “what are you hoping for, boy or girl?”. It’s a pretty regular question and one I know I was asked myself. I mean it’s also a pretty rubbish question. If anyone asked Ben while I was pregnant, what he was hoping for, he’d always say ‘errr.. a baby’. But in reality, no matter how daft, it’s probably a question we’ve asked expectant mothers ourselves.

So, hands up who answered “I don’t care”? And keep your hand up if you added the caveat, “as long as it’s healthy”? Quite a few of you I see.

I didn’t. Well not quite. I knew, knew, knew I wanted a boy. I was actually quite petrified at the thought of having a girl. Girls are so, well, difficult. Boys, much simpler. And I wasn’t shy about telling the truth. When I found out, quite late on, we were indeed having a boy, I couldn’t have been any happier. But for all my honesty, I know I also used the caveat “as long as they’re healthy”.

What a stupid thing to say.

Was I really saying I wouldn’t love my child if they weren’t healthy? And what did I mean by healthy anyway? It’s such an broad sweeping and vague term. Did I in fact mean, “as long as they’re normal”. I’m horrified to think back to the ignorant me and wonder whether this is the case, but I think it is. I want to scream at her and say don’t be so bloody arrogant and oh by the way, you should know this right now THERE IS NO NORMAL.

So yeah, I got what I asked for. I wanted a boy. I got a boy. And boys are not simple. They are just as complex and difficult and hard work as girls. And I wanted him to be ‘healthy’ and physically he is. I mean he really is. He’s never had antibiotics in his life, not because I don’t agree with them, just he’s never needed them. He gets the occasional cold and has had D&V maybe two or three times in his life. Physically my little dude is an ox. But ‘normal’?

Oscar’s autism is classed as a disability. I have a disabled son. This is not what I hoped for. This is not what I wanted all those years ago when I was flippantly remarking on the life of a child yet to be born. No, I think it’s fair to say, I am not in a place yet where I can see his autism as a gift or a positive in our lives. I also think it’s safe to say if I was asked if I wanted to give his autism back, I would. It’s hard. Some days too hard to explain. But if someone could have told me, when he was born, that this is who he is, would I have done anything differently? Would I have loved him any less, despite him not being the paragon of “normal child” I had held in my head for the previous nine months (and, let’s be honest, beyond)?

I didn’t want this for my son. I didn’t want autism to ever be a part of my life. But it is. And I love him no more or less than I would have done with or without it. To say you don’t care what you have as long as it’s healthy implies you will only love a child if it meets your expectations. I’m pretty sure that that’s bull shit. I’m pretty sure you’d love you child regardless. Maybe I’m wrong. Maybe that’s just me. But maybe we need to stop using such thoughtless phrases, from some kind of maternity script. Maybe we could just change the lines a little.

Q: What are you hoping to have, boy or girl?

A: My baby

Maybe

10/06/2015 by MrsSavageAngel Leave a Comment

Sorry it’s been quiet of late. Truth is life’s fair taking it out of me. The harder things get the harder it is to see the light, the positive, the things that keep you going. The temptation is there to focus on the difficult things, the stuff that makes you sad or, in my case, to feel yourself coming to something of a grinding standstill. Not happy, not sad, just suspended.

We do our stuff every day. Sometimes that means a heart wrenching nursery drop off, sometimes a fraught trip into town, other times it’ll mean staying home because today it’s just easier that way. I don’t know if it’s his unpredictability that ruins me the most. The energy he takes from me he can have. He always has.

So I sit down and think, I know, I’ll blog about this, get it out there, read it through. So I write some stuff and then I stop. Partly cos I’m not sure how to say it, partly because I don’t know what to say and partly because I don’t want people to read it. It sounds so utterly boring that I cant imagine anyone would want to read it. Or it sounds so very self indulgent, so ‘woe is me’ that I can’t stand myself. So I leave the few lines I’ve written in drafts, then worry because I haven’t written anything for a while.

I wonder if it’s his DLA form that’s causing such a blockage? It sits there on my desktop, half done. Every time I do a bit more I feel like I’m betraying him, talking only about the bad stuff. There’s no question that says “And what did the child do today that made you insanely happy?” or “How often does he ask you to jump on the trampoline with him?” It drains your soul. Is that what I have to give, in return for an allowance that enables him to live a life parallel to his peers?

Maybe once it’s finished and sent off I can stop feeling like I’ve forgotten to do something. Like I feel like I can’t move forward, stuck in this treacle of bureaucracy. But that’s asking a lot of one little form (it’s not little, it’s bloody huge!) Maybe it’s not that.

Maybe I’ll feel the weight lift when I work out how to get his hair cut. So he can watch TV without having to tilt his head back, his fringe is so thick.

Maybe it’ll be when I start losing weight again and stop feeling awful every time I look in the mirror.

Maybe it’ll be when I start getting some proper time to myself (two hours twice a week really isn’t cutting the mustard) and maybe it’ll be when his nursery sorts out his plan for next year.

Maybe it’ll be when he starts his speech therapy and maybe it’ll be when he calls me mama.

Something’s pulling me down.

I’ve got a feeling it’s called life.

6 weeks on – our ASD journey

27/04/2015 by MrsSavageAngel Leave a Comment

So, it’s been 6 weeks since we had the meeting where it was agreed my gorgeous, floppy haired baby was just a little different from the other children. 6 weeks since I wept on my husband in a hospital corridor. 6 weeks since we felt one weight lifted and another replace it. 6 weeks since Oscar was diagnosed as “autistic”.

We’re getting on pretty well I think. Oscar’s speech gets better every week. Every day brings new words, new phrases, something else to amaze and baffle me. Three weeks ago, out of the blue, he started to say “Thank You” whenever you give him something or do something for him. Sometimes it’s even “Thank you mom mom”. He’ll even point it out if you don’t say ‘thank you’ when someone gives something to you! He can’t speak but suddenly he’s the politeness police? What the heck? And I say ‘heck’ because that’s another things he’s started doing, repeating the words you really don’t want him too! Like “Oh My God!”. And “Balls!” And the “f” word you never want them to say in front of their preschool teacher! It’s not that I swear all the time, but the fact that I didn’t have to worry about him repeating back what I said, meant I didn’t think to moderate my language ages ago. Like my friends did. Ahh well! At least it means he’s taking it in I guess? Sigh!

His behaviour is getting better and better too. His eye contact has gone from shaky to amazing in just four small months. He approaches other children now, be it friends in the garden, those at nursery or strangers in the park. He’s learnt a simple “Hello” opens all sorts of doors, particularly games of chase. There’s still nothing Oscar loves more than running around, but he’s now allowing other children to get in on the act. Even more amazingly he’s started to play games initiated by other children. Slowly slowly catchy monkey as they say, but last week he was approached at preschool, by a little girl, asked to play a game and he did. I think his TA was as shocked as I was when she told me.

Don’t get me wrong he still gets upset about things. Frustration is clear on his beautiful little face when he can’t get what he wants or do what he wants. But now he looks at me while he cries. And his bottom lip wobbles. He rarely hits himself and the anger goes as quickly as it came. These are tantrums of a toddler. We rarely see the blind panic of a melt down that can take over a hour to calm any more. But when we do, we’re coping with them better. Staying calmer, giving him that safe place he needs. We’re also a lot better at avoiding situations that could push him to that place beyond. We try not to make a big deal about it and that’s helping I think. For example, some birthday parties work for us, others (the sit down and watch kind) don’t. Yet. Give him time.

Yeah all in all, he’s progressing brilliantly. And yet as he gets easier, the stress of him is replaced by the stress of what his diagnosis brings with it. A hundred forms to fill in, a thousand things to read, new people every week, a new language (mainly made up of acronyms), advice, process, meetings. Getting everything set up to support my little guy, comes at a human cost. Me. I tell you what, it’s lucky I was an Account Manager for five years. Little else could have prepared me so well to deal with so many agencies all at once. Plate spinner extrodinaire that’s me. Only this time I’m not getting paid for it. But on the plus side neither do I have to work in Hoxton Square with all the hipsters, so you know, swings and roundabouts 😉 .

I’m not trying to brag here, but I feel like I need to keep some kind of record of the journey, of his milestones that would mean so little to anyone else. Heck ( 😉 ) who am I kidding, yes I am bragging. I’m so ridiculously proud of my baby and how he’s coming on that it’s worth all the forms and all the meetings and all the stress.

Last week someone told me what a polite little boy I had, after he said Hello, Please, Thank You and Goodbye, all perfectly and all in the right place. I didn’t cry, because seeing me sad upsets him, but I was crying inside.

Crying with happiness.

...handsome boy. — …handsome little boy.

Birthday trip to Thames Valley Adventure Playground

05/04/2015 by MrsSavageAngel Leave a Comment

So as you know, last week was Oscar’s third birthday. I don’t know where the time has gone either! Anywho, we planned a party for him and all his chums for the Saturday after his birthday, but wanted to do something actually on the day, just the three of us. It’s something we’ve always done. For his first birthday we went to Marwell Zoo, which worked out well, as he was still happy to be carried around in the baby rucksack thing. Last year we went to The Aquarium at Southsea. Whilst a great idea in theory, it really didn’t work in reality. It wasn’t busy, but it just wasn’t him and we left not long after we arrived. So this year we wanted to do something he would enjoy, and be able to cope with. Unfortunately his birthday fell in the first week of the Easter holidays, meaning the possibility of ‘attractions’ being busy was high. This might not have been an issue (you never can tell), but we wanted to find somewhere that would give him a sporting chance of having a good time.

Then I read a blog post from AutismMumma about Thames Valley Adventure Playground in Taplow. It’s an enormous indoor and outdoor play facility for children (and adults on a Friday) with all types of Special Needs. You can read more about them on their website. The numbers accepted each day is limited and booking necessary, meaning the place could never get too busy. It also offers a myriad of things which I knew Oscar would love, from space to run, swings, climbing equipment, soft play and an understanding environment for both of us. It looked ideal, so we decided it would be worth the hours drive to Taplow to give it a go.

It’s a really big site and houses all sorts of clever and fun play spaces. The first thing Oscar saw when we arrived through the locked gate was a huge Thomas the Tank Engine, so he was happy straight away. We played for ages in the fully secure, gated and locked outdoor space. All the areas were clearly defined but flowed into one another. He found the giant sand pit straight away and discovered a love of the bucket on the pulley.

We followed his lead where possible and let him go from place to place in his own time. He chose when to go indoors and seemed happy to discover the soft play. One thing I noticed was although the outdoors was practically empty the inside space was quite busy. I wondered if this would be a problem, but it didn’t seem to faze him in the slightest, and he happily found some toy trains to play with and a buggy to push around.

Seems he'll find toy trains to play with wherever we go — Seems he’ll find toy trains to play with wherever we go

Funky breakfast cereal tables and toast chairs

So much dressing up - of no interest to the boy but I loved it! — So much dressing up – of no interest to the boy but I loved it!

It was the first time for all of us at an SEN, well, anything really. It can be daunting taking a step into this new world and don’t get me wrong I wasn’t sure how I’d feel. But as it turned out I felt no different than I do when visiting any other play place for the first time. Quick to scope out the safety and aware of where he might get into difficulty. The children all seemed to be having a rare old time and my only concern for Oscar was that he seemed to be the youngest there. It made me see just how small he still is, rather than the big ‘man child’ I see most other days! And the only place this became a real issue was in the bike park. The (fenced and security minded ) playground full of trikes and bikes and things to run with. He would have loved it, but it was full of children much older than himself, whizzing around and so we left that for another time. As for safety, I was really interest to see thoughtful touches here and there that clearly catered for not only the children but also the carers, such as cubby holes for bags, high off the ground, toilets that were easily accessible from the outside, should a child become trapped and a carers/staff toilet with a door handle way out of reach of any child.

A handle out of the reach of any curious hands

Oscar had a wonderful time and there was so much choice of things to do, he was able to move from one thing and back again as comfortably as he liked. I loved the fort and the slide and I particularly liked the wooden rockets and play houses. So much thought and effort had gone into them, some of which were clearly handcrafted. I also really loved the sensory garden, although Oscar wasn’t that bothered. I could have stayed in there all day playing on the chimes and the drums! My favourite piece though, was one I thought was unfinished, until I looked more closely.

A spinning wheel full of beads. A sensory treat for anyone!

What is it? Look closely. You decide. Love it!

The only problem we had was leaving. We’re working on transitioning more smoothly and sometimes it works and sometimes it doesn’t. He was having a great time, but was also getting really tired. So when it came time to leave he had a bit of a melt down. Not that anyone else blinked an eye and we actually left at the same time as another child doing exactly the same thing! The look of understanding was appreciated. Anyway he wailed for about five minutes, then passed out. The sign of a good time had, I think.

Would we go back? Definitely. I wish it was a bit closer, but he’s a good traveller and he had a ball, making it totally worth the trip. The whole time we were there I just kept thinking “oh his friends would LOVE this” and TVAP do run integrated play days every Saturday for children with and without Special Needs. Hmmm, maybe I’ll have to arrange an outing one day.

Happy Birthday Oscar and thank you Thames Valley Adventure Playground.

Its all in the planning

24/03/2015 by MrsSavageAngel Leave a Comment

I can’t believe the end of March is fast rolling round. I’m finally starting to get everything in place for Oscar’s birthday, which is lucky, as its on 2nd April. It might not have been, had the induction worked when it started three days earlier, and I still swear he hung on in there for fear of being born an April Fool, but there you go.

His actual birthday is on the Thursday and Ben has taken the day off work. We like to do something just the three of us on his birthday, only I was struggling to think what to do this year. His birthday falls in the first week of the Easter hols and I knew everywhere, even those places he would enjoy and could probably cope with, would be heaving. So we’re taking a leap and going on our first outing to a SEN play facility, the Thames Valley Adventure Playground. I read about it on someone else’s blog and even though it’s an hour away, I knew immediately that I wanted to take him. I’ll write more about our visit when we’ve been, but I’m super excited for him and it’s an adventure for us as a newly diagnosed SEN family. Fingers crossed!

We booked his party for the following Saturday a while ago now and while he doesn’t really understand what’s going to happen yet, we are so excited that we have the exclusive use of our local soft play cafe The Hen House in Haslemere. My plan is to move as many tables and chairs to the side as possible, giving the children as much floor space to charge around in as I can. Other than that, the wonderful team at The Hen House have the entertainment, the food and the drink covered. Which has kind of left me to enjoy planning the little details. Such as what he’s going to wear. As it’s a soft play party there’s little point him getting dressed up too smartly on the day. However I have bought him this Boden t-shirt, a nod to the farm animal theme. I love it.

Other than that, the guests have been invited and most but not all can make it. But then that’s what happens when you book a party both on Easter weekend AND on the day of another boy’s birthday! I completely forgot about it being Rudy’s birthday until the moment I went to tell his mum about the party. Honestly, how could I forget? We were in beds opposite each other in the hospital! Ahh well it was going to happen sooner or later I guess and hopefully we’ll get to celebrate with them another day.

The invites themselves were something of a mission. Once I decided on a farm theme, I saw some beautiful barn invites on Pinterest and was convinced, for weeks, that I was going to make some just like it. Make. Including cutting stuff out and sticking stuff on. It was a lovely thought and all that but seriously? I barely have the time to blow my nose most days! So not wanting to be defeated entirely, I ordered some personalised printables from Etsy (several invitees told me how much they loved them and I think I could have passed them off as my own creation, but I just cant lie that well!) I also bought card to print them out on, wanting ever so much to have physical printed invites. What a palaver! The card wouldn’t go through the printer and when it did the colour wasn’t as I’d hoped. In the end I emailed the invite round and do you know what? I have no idea why I didn’t just do that in the first place. Physical invites are great for a child to take into school and hand out, but really, when it’s going straight the parent, email invites are the way ahead.

As the party’s taking place in the highly decorated Hen House, decorations weren’t really the necessity they might be if I’d been hosting at home. However, in keeping with the theme, and because I have yet to find a child who doesn’t adore them, I have ordered helium filled balloons, in a black and white cow print. My plan is to have them float around the place with strings long enough to reach up and grab. At the end of the party there’ll be a balloon for every child, and hopefully a few for Oscar to take home too!

Then there’s the party bags. I’ve had a bit of a downer on party bags in the past, primarily because they always seem to be filled with sugar and plastic. Now I’m not saying the boy doesn’t love sugar and plastic, but I wanted to see if I couldn’t pull together a favour bag that carried on the theme, but also had fun and interest for the children. I think I’m getting there, having managed to source plain brown paper lunch style bags from pipii.co.uk. Everything going in it has a nod to the farming and farm theme. There is some sugar, but also some fun and I hope some interest. I just need to figure out if I’m going to decorate the bags somehow. I want to. I really want to! But chances are I won’t and I’ll call it minimalist instead. Ahh well!

Which just about covers everything a three year old could want for their birthday.

What?

A present?

Ahh jeez!