Everything from my bathroom is now in the bin or the washing machine….and the gate is back for the foreseeable!
My bathroom gets flooded at least twice a week, in fact that’s a very modest estimate. Bella is obsessed with running taps and pouring water, she loves filling unusual things with water and balancing them on the edge of the sink before giving them a shove off watching them fall.
Her favourite at the moment to fill are wellies which in the rainy snowy climate we have currently is ever so slightly inconvenient. Why she does this I don’t know, what stimulation she gets I also don’t know. I’ve previously had stair gates on the bathroom door but with a toilet trained (just) four year old also in the house I really can’t put any actual barriers up as he has done brilliantly with his toilet training. He never questioned why he had to do it when his sister still wears nappies he just got on with it. Sure it wasn’t all plain sailing but in the last five months or so accidents have just been that, real accidents sometimes stemming from his insecurities of going to the bathroom alone. A gate on the door, even though he can open them now would really slow things down but maybe it’s something I’ll have to reconsider. Our flat, being ground floor, suffers from damp as it is so having a constantly wet bathroom is really less than ideal!This is just one of the charming quirks in our autism house, this is one of the reasons Bella can’t be left unattended and
leads onto a bigger worry involving water. She is obviously favinated by water and that includes
rivers, puddles, swimming pools etc. Her facination in the house is flipping annoying but
the outer world it is downright dangerous!
Last Sunday after months and months (years?) of planning we finally launched Square Peg Sensory a mobile sensory unit! It was particularly stressful when both the electric and the tailgate decided not to work properly! Thankfully just in the nick of time it all came together ready for Anna Kennedy OBE and Alan Gardner (The Autistic Gardner) to cut the ribbon and officially open the room! Our whole family turned out to help,how great is that!
Logan was more than a little overwhelmed swinging from silent to all out chaos, running and rolling around. He had fun and was really well behaved thankfully he had his two aunties there as well as two grandads to take it in turns feeding/entertaining him, to be honest I know how he felt! I honestly felt like I was just watching the whole think happen in front of me. At least 100 people turned out to see and support us and it really is very overwhelming.
Bella took to her buggy in the afternoon and covered herself in coats and scarves (I don’t blame her it was freezing!) Funnily enough she stood with Logan and I while the mini speeches and ribbon cutting happened. She was golden even if she did start singing loudly half way through, she really coped brilliantly but backed off when people closed in to queue.
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I don’t often think of Bella as being disabled, ok I know she is but day to day she is just Bella. Her differences and challenges are just aspects of our life, it’s been our life for five and half years so I don’t know any other way.
Lately her language has been coming on a little easier than this time last year. She can now make a request with lots of prompting and coercion. She will still try to drag me by the hand rather than go to the ‘effort’ of talking but I am past giving in to that. Now it’s pretty much the case that if she doesn’t ask she doesn’t get! Often I feel awful as she’ll give up before getting her request out or sometimes I think it just takes so long for her to ask that she goes off the idea.
Some of our typical conversations:
Bella: chocolate chip brioche
Bella: want….piano (orange juice, chips chicken, crisps, Mulan.)
This is brilliant for me, it can (when it works) make our lives massively easier. That is until illness hits. There is a bit of joke that when the Bakers get ill they take to their bed and Bella definitely takes after her Nanny on this one. She also stops requesting, singing and usually eating and drinking too.
She just goes silent.
Normally although still pretty much classed as non verbal she is very noisy, always singing, repeating or the classic whining!
I’m really thankful that chickenpox only knocked her down for a few days. I cannot imagine how poorly she feels when she goes into these shutdown periods. As you can see she looks very sad and at these times it’s even harder than usual to reach her.
Temperatures are fun as the only way to get medicine into her would be by tying her down and forcing it down her throat. (Ps force feeding her anything does NOT work unless you want it running down your face!) I dread the day any illness more severe hits as I genuinely don’t know how I’d cope medicating her. For now I’ll just keep her healthy on her diet of pizza, nuggets and crisps ;-)
She’s feeling brighter can you tell?
Ok so I’m being a tad dramatic! Logan had chicken pox all over his birthday and Christmas, thankfully they didn’t affect him too badly and he fantastic time! Also I scored MAJOR mum points by getting his birthday card shown on Milkshake! Woohoo I was super stressed about that one!
He had a little party with other chicken pox survivors….Bella was still spot free.
So by New Year’s Eve we were out of the woods….or so we thought. On New Years Day there was a spot, just one, then two on Bellas neck.
So it looks like school won’t be happening on Tursday (two days time!) She is now officially covered, much worse than her brother. She is itchy and uncomfortable, her temperature is up and down and I’m basically letting her lie in my bed with an iPad all day. I’m hoping it gets a little easier on her but I doubt we’re out of the woods yet.
So it’s Boxing Day and after a good (decent) nights sleep I feel in the best position to report that our Christmas 2015 was pretty fantastic! No major meltdowns (by children or adults,) super chilled and best turkey ever (thanks to Gordon Ramsey for convincing me to shove my arm under the turkey skin up to my elbow!)
We’ve all had some great gifts and in the spirit of the season I’m feeling pretty grateful.
Bella had her swing chair (HUGE success,) bubble tube, sensory bits, bus with figures as she loves buses (then proceeded to sing wheels on the bus on repeat haha) and most importantly her box of 3D geometric shapes! Most people followed the no-wrapping rule which meant no waste and that she could browse her gifts in her own time.
Logan was like a present opening maniac and we had to use many, many distraction tactics to slow him down (counting other people’s presents and even stopping for a biscuit break.)
Logan had another superhero-fest just four days after his 4th birthday
Christmas Lunch was relaxed, Bella had 5 chicken goujons, crisps and some cocktail sausages and although Logan had a whole plate of dinner he actually ate mashed potato, gravy, jam (cranberry sauce) and a few pieces of sweet corn. Good for him, good for both of them. For a good five minutes we had both children sitting at the table while we ate!
I’m very excited for turkey-sandwich and chocolate day more commonly known as Boxing Day.
Hope your day went well…if not I hope today is better :-)
Every year I try and plan a Christmas ‘experience.’ I’ve done the paying £10 to pop in and out of a grotto in town but neither kids have gotten anything from it with them both needing a little longer to acclimatise than most.
This year we went to Hatton Country World where we have enjoyed many a summer day. It was lovely, very blowy but thankfully not too cold and the rain held. With free carers and discounted disabled child rates it was really affordable costing around £38 for 3 adults and two children.
They had shows on throughout the day which were light entertainment and an excuse to go inside for a warm up. Father Christmas Trips were booked in slots and we chose a later time hoping (rightly) that it would look more magical in the dark.
The Father Christmas was lovely and dealt with my two (not particularly forthcoming) children really well. They were both given a key to the secret toy shop where they could chose their own toy (great idea!)
The only downside is their lack of changing facilities for older children and adults. We were offer to use the floor of the first aid room….errr no! Eventually a manager put a table in the disabled loo for us but this time next year that table will be too small. I have directed them to the Changing Places website and hopefully they’ll take my comments to heart.
Overall we had a fantastic trip and would definitely recommend it!
Christmas time in an autism house is always interesting, maybe the autistic person hates change so decorations are a no-no. Maybe Christmas build up at home and school causes violent meltdowns? Whatever the triggers I find that expectations need to be managed first before anything else…the expectations of us, parents and caregivers.
In my house for instance B (5 and a half with severe non verbal autism) takes no notice of Christmas at all and I’m really not exaggerating. On Christmas morning she will walk into the lounge, straight through piles of presents and climb onto the sofa with her ipad and not notice anything unusual. It’s almost as though wrapping paper acts as an invisibility cloak masking the festivities from her. B really struggles with new toys, games, apps etc. so I always pray people don’t buy her many toys as it can take her months to notice them let alone touch them. Some people might feel upset that their child doesn’t take part in Christmas, however, for me I’d think it a Christmas miracle if she opened a present or ate any element of a Christmas dinner…but she doesn’t and that’s fine. She is happy. It’s ok for her not follow the path we expect her to walk.
L on the other hand (almost 4 with high functioning Autism) has been asking me on and off since August is it Christmas? This is more challenging to manage as it’s just tiring saying no all the time, especially as his birthday is 4 days before Christmas. It’s really difficult for me and everyone else not to over compensate with him as he knows the whole deal when it comes to getting presents. After all we’re so used to presents being ignored that now it’s hard not to go crazy with the super Christmas loving child. However, give this boy something he doesn’t like or hasn’t asked for and he will tell you. I think it’s funny, others can be less impressed. In my mind if you know L and his absolutely literal world he lives in then you won’t be surprised it is exactly to be expected.
So in short, do what your kids love. Remember that your pre-designed ideas of Christmas can change, especially if it saved your family an awful of drama on what should be the best of days. Here are the letters my children would write, I’m sure, if they had the chance.
Please don’t bring me too many presents, I don’t really like new things. If you insist on the gifts then please don’t wrap them, I don’t like to rip the paper and…well I just won’t open them. Please don’t buy me ‘age appropriate’ toys, or dolls, or anything else ‘most five year old girls’ like. Maybe talk to Mama about the specifics (she knows the specifics.) Please let my family know that I want chicken dippers and Micro-chips for my Christmas dinner, anything else will upset me and leave me hungry. Can you also let my family know that I plan to play with my iPad all day until the battery runs out, I’m not being anti-social or rude I’m having my best kind of Christmas.
Thank you B
Dear Father Christmas,
I have been very good and would like an Octonauts toy and a Fire Flynn train from Thomas and friends. If you give me a present I didn’t ask for and I don’t like it, please don’t be upset if I tell you so or just discard it…I made a list, going off plan is risky. Please tell my family that I may or may not want to eat a Christmas dinner depending on my mood. I eat roast dinners all the time at school but sometimes struggle to eat the same foods at home. I’d also quite like a speedy Spencer train. I think I’d like it better if you just magic my presents in the house as I think the idea of you coming in the house is a bit scary.
Thank you very much, please L
Originally posted on the Family Fund website.
Lauren is a single Mum to two very different children on the autism spectrum age 5 and 3. She also runs the Square Peg Foundation supporting and empowering children with disabilities. The family were helped by Family Fund last year with a fantastic break to Peppa Pig World. Head over to Women With Baby to read more about Lauren and her family.
So I’m doing the rounds looking for mainstream schools for Logan, I have my list ready and last week I got to peak inside my first primary school. When Bella was this age I viewed 3 special schools as mainstream was never an option for her. I was nervous as I always am in unfamiliar territory but I knew the questions I had to ask and was ready to ask them.
The head teacher made her speech about how basically none of us had a chance of getting our kids in as it’s so exclusive and over subscribed…good start! She did mention that children with an EHCP in place to priority so I saw a tiny glimmer of hope. Two year 6 girls, who as I pointed out are more confident than I am now, showed us around and gave us the student eye view. I was stunned, the classes were enormous, vast, bigger than most of my rooms at secondary school. I imagine most people think ‘wow look at all this space’, I think, ‘how the hell is a teacher going to spot my sons needs across this room.’ Let’s face it we all have our own ideas of what makes a perfect setting and I wasn’t convinced from the outset that this was it.
After the tour the head teacher was taking questions and I strolled up bolstered by my rehearsal in my head, “Can I ask what your SEN policy is?” She looked as if I had asked for Pi to 100 decimal places. She stuttered slightly and then told me that their SEN offer is on the website, which of course I know, it’s a legal obligation not exactly an offer. I then went on to tell her about Logan and how his main issues are with transitioning and adapting to new environments…she asked if he has a diagnosis. Of course he has a flipping diagnosis!! Is what I wanted to say but of course I just assured her he did as well as that his EHCP was going through (which she hadn’t asked about.)
There were a few brief words but her over riding comments which stuck with me,as she said them both twice and were her very first and last comments on the subject were;
We’re not a special school and We will try our best.
So I left, in shock. I am going to give her some slack and allow for the fact that she was under pressure having lots of parents asking any question they think up. I’m also going to admit that she couldn’t have given me an actual real solution to Logan’s need there on the spot however even a suggestion I speak to the SENSO, or her at a later date when it’s quiet would have been better. What parent of any child will ever be happy with We’ll try our best?
It certainly isn’t good enough for my children anyway, no matter how popular the school is! Onwards and upwards I hope.