A moment of beauty at build-a-bear

Kids are so full of surprises! Just weeks after Christmas and the usual delude of new toys and games and what was my daughter wanting to play with? A teddy bear she has had for years! Now reincarnated with a new name and involved in all sorts of fresh imaginary play; I knew what was coming next…

Mum, I can’t find Ellie’s clothes?

Imagine my confusion! Who or what is Ellie? Followed by the panic of realising I not only have no idea where the once-buried-under-the-bed-in-a-box toy appeared from but how did she even remember it had clothes? And she seriously expects me to just pull out this last seen in 2013 teddies coat and boots? What? Goodness, this mamma can barely remember the day of the week let alone anything else! We dug in the we-have-no-idea-where-else-to-put-this-stuff box to no avail and alas I began to wonder if these ‘suddenly in demand’ items she can not live without now could have ‘accidentally’ jumped into my car boot in the pre-Christmas clear out. Oh what an awful parent I am! I shall pre-book my daughter to that counsellor she is sure to need when older!

And sometimes, for our own sanity, we make a promise we know our bank account will live to regret!

Ok, this weekend we shall take Elizabeth, Ellie, ..whoever, to the bear shop and buy her an outfit. Ok?

And breathe!

Well until today when that eager eyed baby woke and ran into my bed to announce today was the day her bear was getting new clothes! That’s it, NOTHING is ever getting thrown out again, you hear me!

So we excitedly (well reluctantly on my part!) got prepared to go. And this is when it gets complicated! As well as my way too attentive daughter I also have the honour of being mum to my son who has complex needs. How in the name of whoever am I going to get this boy of mine into build-a-bear? It’s not like you can buy a bear and get a free burger now? And the last time I checked they had no lift or hand dryer? So that’ll be a ‘no chance mum’ as per!

Flip! Could Elizabeth, Emily, sorry Ellie not become a naturist for a while until you find some other old toy? That look…well if you are a parent you know what I am referring to…it said it all!

So let’s just get this over with!

You are kidding me? Really?

My son, aged seven, who has never in his life touched a teddy, who has yet to speak, who has no idea about imaginative play…is standing over a basket of teddy ‘skins’ and has ‘chosen’ one he wants! STOP!

He is in the shop. He is not screaming. He has not wrecked the entire place.

Now THAT was worth coming!

Now how do I explain this ‘teddy’ needs stuffed by a loud, spinning machine full of white ‘stuff’? He doesn’t know what a teddy is? Or maybe he does?

Well he waited, and he ‘chose’ an outfit, unsurprisingly one that closely resembled his own beloved school uniform (he doesn’t care it was a skirt) and a red bag to match. Meanwhile I dreaded to imagine what his sister had seen! Have you seen the prices of these clothes? I pay less for my own clothes and I can assure you they are a whole lot bigger!

She settled on…the exact same uniform, a pair of pyjamas…and the added ‘accessory’ of…a wheelchair! She announced in front of the entire shop that her bear just wanted to be like her brother. And how do you argue with that?

Ok, mr build a bear, your prices are crazy, your appeal far too great, your choice better than the average high street shop for ‘real’ people, and I never want to visit for a good while until my bank account recovers…

But I have to admit, you gave me a moment of beauty today. I even hasten to say a miracle. The boy who has no teddies now has one. And he hasn’t let it go since! And you ‘normalised’ using a wheelchair for a child who sometimes struggles at how different her brother is.

So cheers! I owe you one!

P.s, a coffee shop to give me a moment to recover may not be a bad thing! I’ll leave that with you 🙂

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Just imperfect parents raising imperfect children

I have a confession to make: I am not a perfect mum.image
I just needed to get that ‘out there’ without feeling a failure or weak. The truth is none of us are ‘perfect’ parents and none of our children are ‘perfect’ either. We are all muddling through as best we can. It’s just some of us are under more scrutiny than others.Most families get to raise their children with minimum involvement from others outside of their own family. I don’t have that luxury. And while I am grateful for everyone who supports us it also comes with huge pressure to ‘perform’ and ‘jump through hoops’ at times.
I left another multi-agency meeting this week in tears. While no-one actually came out with the line of ‘it’s the parent’s fault’, there is always a feeling of inadequacy that comes with having children who have ‘extra needs’. Sometimes it can feel like your best is just never enough.
So I just need to get this out:
I am not perfect and neither are my children.

My children throw tantrums often for the craziest of reasons, they have more screen time than they should, sometimes we are still in pyjamas at lunch time at the weekend. I sometimes let them sit right in front of the TV even though I know they shouldn’t, I help them get dressed some mornings for school just because it is quicker and easier, and I have even thought about doing homework for them because I just can’t face another battle (I said thought as not quite mastered the art of writing and spelling like a six year old).
My children have off days.
And so do I.
Just because my children have special needs does not make my family any different to any other. In fact we are probably more exhausted, more chaotic and busier than many other families.
We live in a glass house at times where teachers, social workers and therapists feel they can tell us where we are going wrong and what we have to do to help our children. Sometimes it is helpful; sometimes it isn’t. I don’t have all the answers, but neither does anyone else.
But we are doing our best.
It is easy for others to judge and criticise and ‘guide’. And there are times when someone outside of the situation can see things we just can’t which is helpful and supportive. But on a daily basis we live this.
I know I get it wrong at times. And I know other times I get it just right. Sometimes my children master something new, sometimes they don’t.
Special needs parents are no different to other parents really. But because our children ‘struggle’ in areas it puts pressure on us to ‘fix’ them and support them when all we really are is imperfect parents raising imperfect children.
When we get it ‘wrong’, be kind. When we get it ‘right’, encourage. We are all raising unique, wonderful, individual children with different qualities and skills. And we are all doing it in the best way we can.
My children’s struggles may be obvious but everyone of us struggle, wether child or parent.
Be kind, be supportive, and don’t judge.
Every single one of us are just imperfect parents raising imperfect children at the end of the day.

Sometimes autism wins…

You can turn anything into a positive if you try hard enough. But however you look at it, somedays autism wins.

For example it was so easy to pack my sons clothes for a holiday as all he will wear is his red school jumpers. I can even joke that he is saving me money buying him holiday clothes. I laugh about the fact he is slowly turning those jumpers into pull overs as he eats his way up the sleeves. But that joking hides the sorrow in my heart that every time I see him in that school jumper I realise that once again autism has won. If you were scoring the days then before anyone has even had breakfast in my house it is clear that autism is on the winning side. I have to choose my battles. And right now this one is just beating me. So I turn it into a positive. Autism might win the battle, but one day I might win the war. And if I can get him to do more things, be a little more flexible during the day, or wait without screaming then autism can win the red jumper for another day.

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You get used to pushing a stroller around and you actually forget sometimes that the ‘baby’ is actually almost 6, until someone looks at you like you have horns in your head. Hey, I say to people, having a buggy makes carrying bags much easier as you can hook them over the handle bars. Pushing a buggy gives you something to lean on when you are tired, and stops you having to drag a child along kicking and screaming. I have to dwell on the positive. Because the fact that this week I took both children on a train ride into a city centre and had to put both my five year olds into buggies in order to achieve anything could really get me down. It is another sign that this week autism won. It was the only way my family could go anywhere safely. It was the only way the children could cope with the noises, crowds, walking distance and strange smells. It made boarding and alighting the trains very hard, it made getting over the bridge to the other side to get the car like a mountaineering expedition, and it filled the car boot before we even tried to get a bag in. But although autism won, it was actually a win for us as we managed a day trip out and we all had a good day.

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So we tried to go out again. This time we tried a farm. One child loved it. The other lasted a few minutes before having to be carried back to the car. Autism prevented me even getting pics of the child who was loving it.

We moved on to an indoor adventure centre. One loved the toy shop and wanted something from the cafe. The other was so preoccupied with the lift and automatic doors that one parent missed out yet again. Sometimes autism wins…

We’d packed a picnic so we found a lovely park by a castle to sit on a bench and eat. One was so excited. The other could see a macdonalds at the bottom of the hill and that was the end of that. Why would anyone eat cold sandwiches and fruit when there are hot fries and nuggets at the bottom of the hill? It seems at times like this we are fast losing the war. So many battles…which ones to fight, which ones do we just ride out?

Never judge a war based only on what you see at first glance. It might seem like autism is winning but in actual fact we are making progress.

This week the children have both thrown toys for granny’s dog. They have played with and interacted with something other than ipads and trains.

We have had fish and chips outside watching ducks at a pond.

We have been for walks and seen sheep and cows as a family.

We have even managed to eat out at a buffet restaurant.

One of the children ate chips for the very first time.

We are not allowing autism to keep us at home during the summer holidays.

Autism, you might think you are winning because the children are still in nappies. You might think you are winning because one still can’t talk. You might think you are winning when we abandon plans and try something else. You might think you have won the war because we let the boy wear a red jumper everyday.

But don’t be fooled autism…

Sometimes autism wins…

And sometimes we laugh and smile and have fun like it never even exists. It’s all about being in it for the long hall. The war isn’t over yet…and the summer holidays have only been going for a week!

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