Christmas must have!

Logan wants a lot for Christmas, not surprising as his birthday is 4 days before so his wish-lists always tent to combine into one.  Transformers, a Lego train and a Paw Patrol teddy (pillow pal) are on his list.  This morning he added a "Bubble Bee from Transformers dressing up costume" as his best friend George has one.  I do wonder how much he will play with said toys as he tends to only ever want to play on the iPad or watch TV to my utter frustration.  Sporadically I will walk in and see him playing with a toy, fully engrossed, making up a little story and my heart sings.  It's not very often however.  Most of the time I have a chorus of "what can I watch" on repeat as I try and hold off on the screen time for as long as I can.

What a weekend!

On Saturday 3rd December we ran Square Peg Foundation's first Sensory Santa session. I was nervous. I'm always nervous, I always see 101 things that could go wrong...and I'm a perfectionist, if everything isn't just right...well I strop. My mission was magic and nothing short of that would do! Fairy lights were strewn around the building we were using (then I panic about health and safety,) Santa's beard was changed three times to ensure a "realistic" look and the contents of our goody bags were constantly added to so that nobody was disappointed.

Christmas at Wyevale - Review

We were lucky enough to receive free tickets to visit Wyevale Garden Centre in Shenstone and have Breakfast with Father Christmas.

I've never done this before with my two Bella 6 and Logan almost 5. Both have autism and rarely react to situations as you might expect.  Logan was very excited to get up and out early for breakfast on Saturday morning.  The website said it started at 8.30am but when we arrived it was still closed.  Logan didn't mind, he inspected the vegetables outside and told me that there was fruit inside the hut (he visits the soft play inside with his dad sometimes.)

Christmas is coming

There's no hiding now it's December tomorrow, the trees are already popping up in windows on our road, the shops look like the elves have gone to town and the "good food" is in the shops.

 For some though Christmas can be really stressful. Logan's teacher noted in his recent parents evening that he was showing his first signs (since settling in to main-stream reception) of discomfort with all the routine changes that Christmas brings. Rehearsals for school performances when you should be doing phonics can cause real confusion, especially for a child.

12 Days of SEN Christmas

Just a bit of nearly Christmas fun!

The 12 Days of a SEN Christmas

Controversial or Cute

Controversial or Cute?

The clothing arm of Square Peg Foundation has now been running for well over 3 years and has in the main has been received  very well. Every event we have attended (which in the early days were many) we would watch as people read our design slogans and smile as they "got it."

There have however been people along the way who haven't liked us, they don't like putting labels on they children...they don't like some of our more "controversial" slogans (More Special Than Needy being a particular trigger)

Siblings

Ahhh, just look at them. Sharing space, sharing an activity (ok yes they’re watching tv!) Being together is something that they don’t often do, they spend all their time together but in reality they are apart. 

Naughty Auty

Nothing is sacred in this house! Not even the hidden jar of Nutella! Honestly I leave the room for one minute, thank goodness for that little snitch and avid rule follower sitting at the table.

The Return of the Diva

You know when a day goes wrong I’m epic proportions? Well that was today. Bella went back to school after 8 weeks off and boy oh boy did she let me know her feelings about it. 

After being deceptively compliant putting on her uniform, having breakfast and doing teeth and hair, we were ready at 7.30am. We had no idea what time to expect the car, or what car to expect, or who her guide was. Let’s just say that preparation could have been better.

The Bin

Bella is messy, wildly messy, she leaves carnage in her wake and to make it worse she loves tiny toys which she collects up and then releases dramatically into the wildness of our flat. I can for the most part cope with the toys, the big issue I have is with food.As soon as she reaches a food she doesn't want (crusts, a funny looking chip) or reaches the end of a packet of crisps for instance. She drops it on the floor. Not on her plate, or the table, not even passing it to me...it goes straight on the floor. This happens in our house, at school, in restaurants and it's just not cool. 

As a single parent I'm not prepared to sit with her while she eats catching everything before it reaches the ground, I have stuff to do, and sometimes I'm eating at the same time so, y'know, priorities.

Every now and again I realise that I am truly and utterly stupid and I have these realisations which hit me like lightening bolts. Our kitchen has a stairgate on it to stop her from getting in and causing havoc. So, even if she knew to put her rubbish in the bin...how could she? It's in the kitchen. This week I found an old toy bucket and put it in the living room and after she'd finished one of packets of crisps I (picked up the discarded crisp packet and put it in her hand) picked up the bin and said 'in the bin.' She obliged quite quickly, I was impressed and also happy that she didn't freak out.

15 minutes later (don't judge) she finished her second packet of crisps and LO AND BEHOLD she walked over and put the packet in the bin. Amazed wasn't anywhere near what I was feeling. This summer her willingness to try and learn new skills has been fantastic. Her (usually titanium strong) will has been more flexible than I've ever known it.

The next day I carelessly handed her a packet of crisps in the kitchen and I watched her quickly vanish into her bedroom with them. Parent fail right there, but damn she is fast...and I was tired. Later I (having forgotten about the rogue packet of Worcester Sauce Walkers) wondered into the living room to find the empty packet in the bin. A day later. Unprompted. No reminders. Who is this child and what have they done with Bella, actually scratch that I'm happy with this one!

Who knew a bin could bring such joy!

Questions to an Autism Mama

I thought I would do a series on answering some of the questions that people might want to ask but maybe not know how to ask an Autism parent like myself.  My responses are simply that my responses! I don’t speak for anyone else and know first hand that many other parents of children on the spectrum feel very differently and some think the same, so here we go

.

Q. What is Autism?

A. Autism is a very complex, very personal diagnosis which affects every person differently.  There are traits which show up regularly, poor social interaction, lack of eye contact, delayed speech, obsessive behaviour but these are traits and not criteria for diagnosis. Every diagnosis is different, my daughter for instance struggles to interact and communicate with the outside world, she lives in her own little bubble and on the whole is pretty content (until it all goes spectacularly wrong!).  Other children don’t sleep, at all. Others self harm, some appear to have nothing 'wrong' and only when they collapse into a public meltdown to people see what is going on inside (my son.). To put it bluntly people with autism are wired differently, not necessarily wrongly just differently and as long as you work out the glitches you can live with it just fine.

Some use the "It's like being a Mac in a PC world" analogy which is good for us as I don't understand Macs at all!

Q. What causes Autism?

A. We don’t know is the short answer. There are theories, hundreds of theories from the MMR to low birth weight probably all the way down to women eating jam during pregnancy.  You get the gist, most theories involve pointing fingers at parents. I personally think like many people that it's genetic, both of my children have degrees of autism and they have cousins on both side who have it. They also have a dad with Bi-Polar and that is connected quite closely to the spectrum.

Q. Would you want a cure?

A. This is a tough one for me, my children and their Autism are so delicately intertwined that I have no idea where one starts and the other stops.  It is not like a tumour which you cut away and leave the original child in tact (not that I'm comparing ASD to a deadly illness!).  I would have no idea who they would be without their quirks, both good and bad. I think a cure sounds quite scary in all honesty as it kinds of hints at Hitler's ethnic cleansing, getting rid of anyone who doesn't conform. Autistic minds have been moving the world forward for years creatively and technically. The world would be a worse place without them...however...people with autism have been found to die younger due to associated health problems and more scarily high rates of suicide! The extreme end of autism includes co-morbid mental health diagnosis such as Bipolar, Psychosis, Eating Disorders and more. These can lead to violence towards themselves and others and I can imagine the people struggling with all this and their parents wish for a cure everyday.

It's a tricky one, everyone is so different.

Photo credit www.amy-rose.co.uk

Q. Do some people use the “Autism” label to detract from bad parenting?

A. Probably, I can’t speak for anyone personally but I am sure there are people who would rather have their child diagnosed the Autism or ADHD than face up to their shortcomings as a parent.  I should probably mention that getting a diagnosis for many people seems near impossible so anyone who actually starts on this route for the wrong reasons need a ‘check up’ themselves.
On the flip-side having a special needs child’s doesn’t mean you can slip into bad parenting techniques and it doesn’t mean that they can’t be naughty. Both of mine regularly do things they know they shouldn't but the way I deal with them differs to suit their understanding. Autism is a diagnosis not an excuse.

Q. Do Autistic people have a "special gift?"

A. Generally no, being a savant is extremely rare. Autism can often present with a variety of learning disabilities as well as communication difficulties so asking a parent of these children "Ooh are they good at Maths?" may not generate a particularly positive reaction. I personally have two children one who has severe communication difficulties and is considered at the severe end of the spectrum...she learnt to read at age two by rote and learnt her times tables the same way (clever yes, savant...probably not.) I also have a child at the polar opposite end of the spectrum who can talk, interact and on the whole doesn't appear "typically" autistic, he is struggling with the basics of phonics (which isn't unusual for his age but it's clearly not savant!)

Q. Will your child grow out of it?

A. No. Hopefully she will grow with it, as will I as a parent and her advocate.
If your child grows out of their autism I would argue as to whether they had it to start with.

Q. Would you be offended if I asked you these questions to your face?

A. No, I’d be offended if you whispered about me and my family to other people. I’ll also be less than appreciative if you start telling me about autism because your ‘sisters, husbands, ex-wife knew someone with ASD.’ Unless you live with my children day in day out you know nothing about their autism.

Some of this might sound harsh or bleak but it’s not its intention, knowledge is power and to have real Autism Acceptance we need to be able to have honest conversations. Feel free to comment with any thoughts or questions of your own

The day she said my name

Bella is 6 next week and last week the best thing ever happened...she said Mummy!She was stood at the stair-gate on her bedroom door and her little voice called out "Mom-my." I was sitting on the sofa taking a moment before the kids got up however, have you ever been to the dog races and watched how fast they moved when the gates open? Well that was me, I almost hurdled the table and came face to face with her looking at me innocently, "Did you say Mummy?" I asked tentatively (there was still the possibility that I had dropped off and woken with a start like I often do when I think someone is knocking the front door, anxious much?!) She held my stare then started flapping her arms excitedly, "Mummy, Mummy, Lindam.) Yes she could say Lindam, the make of stair gate before Mummy but lets move past that. She said it! Finally, two weeks before her 6th birthday I got the best present ever.

A week on and she still says it almost every morning to get me to open the gate, it's safe to say she knows she's onto a good thing as I cannot lie in bed and pretend I can't hear that little voice for another 5 minutes like I could when she just used to read the stair-gate label out loud.

I bought myself a present (no one else will!) to celebrate the moment. Hopefully she'll start saying my name in other situations and not solely associate me opening the stair-gate in the morning but for now, I will take what I can get!

The day I was accused of hurting my children

I knew a woman once, we met as extras on a film set years ago in what now feels like another life. We only ever met for one day but we really got on so did the usual and added each other on Facebook. Our lives took totally different paths but we politely stayed in contact commenting on photos and wishing happy birthdays but other than that we were strangers and had no impact on each other.

I drifted around until I had my children and moved back to the UK, I made no secret of my daughter's autism diagnosis and then when my son went through the same diagnostic process I was equally transparent about it. Everybody was so supportive we were so lucky but in some ways I think it shielded us from the ignorance of many.

My (Facebook) friend is now an alternative health blogger who has a propensity for some of the more... erm...controversial conspiracy theories in health. I generally didn't read her work but one piece on the old MMR caught my eye, I made the mistake of commenting saying that I immunised both of my children and would do it all again. I like to have faith in our medical system and although sometimes mistakes can be made with the information that I have been given I will always protect my children from serious diseases.

That's when this happened.

A tirade of vitriol and spite, people I don't know mocked me for protecting my children. The long posts stating that I'm in denial, that it's doubtful they were born with autism and that my child will get "worse and worse"

People are entitled to their own opinions and I am one of those people. I don't get involved in discussions regarding the MMR now, I know what I believe and I know others differ. I don't really care. When I look back now my children, particularly my daughter showed distinct signs from very tiny. She was hard to engage, it was difficult to make her laugh yet she would cry for hours for no real reason. Her sleep was always a source of concern (and is still one at almost 6 years old.) Maybe I am wrong and the the combination of immunisations had an effect, maybe the fact that I worked in a rock bar while I was pregnant (might explain those heavy metals!) played a part, maybe I drank too much milk or got too much sunlight (I lived in Spain!) Does it matter? We all get through our days just fine without thinking "Why her?" "Why him?" Why do other people care?

Messy Play Pressure

Bella is nearly 6 and is still massively self directed, not in a "she knows her mind" kind of way but in more of a one track mind, she'll punch you if you try and direct her kind of way. Getting her to do her homework can be a struggle which is infuriating as when she settles down to it it takes her seconds to complete the task. She rarely wants to draw or paint and to be honest I have to hide everything to stop her drawing on the walls, carpets and more often than not her own face.

Creative tasks happen when I have the time to oversee it like you would with a 3 foot high 18 month old. She is so smart academically but has no idea that painting the walls or her brother is anything but funny. Over the holidays we had a few creative/sensory times but honestly they always last about three minutes before the brown coloured paint hits the fan and I have to rapidly wrap it all up!

Logan (at 4) is more interested in sensory play and painting/playdoh/sand etc but we have to work it around when Bella is preoccupied so as you can guess it happens few and far between!

We managed giant water beads which both loved however Bella's first instinct was to overarm it at the wall which resulted in a shower of what looked like nappy filling! Logan was distraught and we had to put it away until we could play safer in the bath which was fun as in water they're almost transparent. We'll definitely be doing that again. We also did mirror painting which both enjoyed and is a good exercise in getting some through mirror eye-contact if your little one struggles with it. Inevitably it didn't last long before Bella started eating paint but she had a go for a while.

I know I should be trying harder...actually scrap that I'm doing more than I normally do and more than I want to do. I like crafts in the bath, contained mess is the best kind if there has to be any and I'm bowing to societal pressure. I don't remember doing "crafts" as a kid, I played with toys, was self-directed. Now I know Bella's direction is a bit further afield than mine was but that doesn't mean it's a bad direction. So this is me putting my metaphorical foot down against the Pinterest army who make all us Mum's that don't craft and buy in birthday cakes feel bad.

We are good enough!

There you go, don't feel bad if you're not crafting/messy/sensory play everyday because you don't have time (and really who does)or because your kids eat too much papier mache to be healthy. It's ok... they do plenty at school surely?