Monday, 17 July 2017

Holidays are coming...

I can't lie when I say that I am jealous of the parents who post on Facebook that they are desperately awaiting the summer holidays so they can start "making memories" with their kids.  Don't for a minute think I don't want to create said memories with my children however I know most of the memories from past experience.

Friday, 7 July 2017

Our Normal

People often tell me that they don't know how I "cope" with looking after Bella and all the support she requires, adding Logan and his anxiety in the mix and people tend to think I'm a veritable Mother Theresa.  Let me tell you now I AM NOT!

Bella was born and grew up and her quirks became more obvious, she has always been the same, she's just bigger now. Some days are harder than others and some days are harder still but it's just the way it is.  One day she will come and take your hand and say "chocolate milk" and your heart melts. You forget about the screaming and the flooding and the negatives and you move heaven and earth to get her the damn chocolate milk.

This is my normal.  For years it was just us three wrapped up in our little bubble of weirdness and I never cared, It didn't bother me if Bella lay down in a supermarket or screamed all the way down the street in her buggy (not in a neglectful way of course.) I immersed myself in the Special Needs community and still joke that I have no friends with "typical children."

Our normal is having a 7 year old in a buggy, is a 7 year old in nappies who has never eaten a vegetable or a piece of fruit. Its choosing a restaurant based on whether they have chips and nuggets and dismissing ones without. It's knowing that your 5 year old can't talk to people he's known for years and yet will randomly take to a new person like he's known them forever.  It's carrying sachets of Nutella around in your bag along with nappies and wipes as standard. It's not flinching when your daughter screams at the top of her voice to hear her own echo and learning to simply not see the staring public.


This is all well and good until you open your family up to an outsider. Introducing your children to a new partner is always a minefield, when they are the kids written about above it is really only going one of two ways.  Our normal is still our normal I just had to remember that I do sometimes need to explain that normal to other people.  Thankfully I now feel like I have someone else in my corner, someone who will run round to the corner shop at 8pm because Bella dug deep inside herself and requested chocolate milk, someone who is so happy to get a high five off her everyday and who I hear happily chatting away to her while she fully ignores him while watching her iPad.  We have been fully accepted and that is perfect.  Explaining the quirks of both my two took a little a bit more creative wording when explaining Bella particularly to his 5 year old...yes we have two 5 year old boys between us and no they would never be mistaken for anything other than Logan and his much younger friend/sibling.


We are finding another normal as a 5 which still involves nappies and Nutella, Lego and laughter, milkshake and meltdowns.  It's just life isn't it.

Sunday, 25 June 2017

A poorly kind of week

Bella has been poorly this weekend with a high temperature and possible sore throat. That's the worst thing about having a child with communication difficulties it's all a guessing game. When she's poorly she takes her self off to bed and stays there. She is quiet, she gets into no trouble. It's all a bit disconcerting.

The other difficulty is that she won't take medicine at all, and no I can't hide it in drinks or yogurts as she can sniff it out like a hound dog. For years I struggled to get her temperatures and illnesses under control and battled with medical professionals telling me to "use force."  Ha ok, this girl is a force of nature and no amount of being held down and having calpol squirted down her throat would result in anything other than her being sick.

Then one day when we were in hospital being patronised by a consultant  (after the nurses and on call doctors couldn't get close enough to Bella's mouth to examine her toncills) She asked why we don't use paracetamol suppositories....Well because at age six no doctor had ever mentioned such a thing and I am not exactly medically trained. Apparently as parents we're meant to be psychic enough to know what medications are available but not too psychic as to undermine the professionals themselves. It's a massive juggling act.

Aaaanyway suppositories have changed our life. When Bella is really poorly I can usually manage a swift suppository insert during a nappy change without too much resistance and getting proper pain killer in her is a game changer.

SO IF YOU DON'T KNOW ABOUT THEM ASK YOUR GP  😊

#autism

Tuesday, 20 June 2017

Hot and bothered

So Logan woke up this morning with a cough that sounded more like a bark and a wheeze when he breathes. After a long wait in the walk in centre we found out he has croup.

After we checked 4 chemists we finally got his steroid medication ordered in as well as an inhaler and spacer for if he needs it.

An hour after taking the medicine he then threw up all over his dinner. ..meaning he had to retake it. A bit concerned he'll wake up like the hulk after a double dose of steroid 😂

Hopefully he'll feel brighter in the morning, although he was originally meant to be born in Spain he was certainly not built for heat!

Monday, 5 June 2017

Lucky number 7!

Bella is seven, how this happened I don't know. Having a child with an additional need means that age doesn't often run in the same linear pattern that it does for regular kids. On the surface, physically Bella is every inch the 7 year old. She is tall and lithe and would make a fantastic dancer.
Emotionally she falls way down on the scale, probably below the age of a toddler. She doesn't recognize (or appear to recognize) emotions in people although she can differentiate between them in books. Somebody crying has no affect on her, if you have fallen down and broken your leg but she wants you to open a packet of crisps...let's just say you'll have opened the crisps before calling for an ambulance.  Intelligence is very hard to gauge, she remembers information she has seen or read and can regurgitate at her own will (note that's her will not anyone elses!) Is this intelligence or more a party trick? She knows a quadrilateral from a rhombus and can go onto a laptop internet browser and find exactly the precise Youtube video she wants in seconds...I think that's pretty smart.

So yes, now she is seven and growing up fast. She is taking teeny tiny baby steps every day and gaining independence with it. I'm trying to help too by letting her spread her wings a little, but it's scary. Having a flight risk who runs like Usain Bolt is more than scary it's bloody terrifying.

We'll get there, she'll get there. Here she is on the big day:

Wednesday, 10 May 2017

Dear Commuter

Dear morning commuter,

I understand that you are in a hurry and you can't be late, I also understand that when you see a mini bus parked in the middle of the road at peak time it can be frustrating, I get that beeping your horn might seem an appropriate response and that trying to squeeze your car between the bus and parked cars may seem reasonable.... but please take a minute....Every morning millions of parents pack their children off on these buses to go to school. These children have disabilities both visible and invisible. We have to hand over out children's safety to virtual strangers and hope for the best, not because we want to but because often schools are far away or don't have before school clubs etc.
I get that you need to be somewhere, but I NEED my child to be safe. I need them to not be scared when you beep and swear and drive off in a rage.
This is Bella waiting to get into the minibus that meant you have to wait for 1 minute. Be kind.


Saturday, 15 April 2017

The art of communication

At 19 months Bella wasn’t talking, she wasn’t even attempting to talk. She was my first so I just took it that she was a late starter and never looked much further (once I’d scoured the forums of mumsnet etc. that is!)

She is now almost 7 and is classed as non-verbal or non communicative or something similar (this does not mean she is quiet! !) She can physically speak and she does, all the time. She has a random little dialogue which includes snippets of TV shows films, songs and words which she has an affinity with. This is officially called Echolalia and it means i have to watch what i say as it can pop up in her monologue a week later!
When it comes to communicating, you know chatting, conversation…that’s a whole different story. She has learnt, with a lot of help over the past two years to verbally request items such as food, drinks and occasionally buggy or car. 
We ran a fundraiser to buy private speech therapy over the summer before she started school as in our area an Autism diagnosis goes hand in hand with getting chucked off the list for NHS speech therapy. 
I know, craziness! If they can’t cure you (and there is no communication cure in autism) then you have to go private to at least learn some skills. We are a single parent family on benefits so you can imagine the prospect wasn’t great. Thankfully friends and family came together and we got her an intensive course where she learned to use basic PECs (picture exchange communication.) These come before speech and some children (and adults) use them to communicate all kinds of needs and wants.
IMG_0081
PEC’s image courtesy of  tailormadefortalking.blogspot.com

Before this the only way she could communicate was by taking my hand and leading me to the item she wanted, this invariably ended in a lot of frustration on both parts as I was really having to guess and just show her everything in the vague area. PEC’s were a turning point and now that she uses them every day at school and she is quite the expert, the early days were tough as she had to be manipulated to touch the cards which she hated.
At home now we don’t use PEC’s as they just weren’t right for us, she can now 80-90% of the time express herself with a simple
“I want crisps”
“I want orange juice.”
The list of things she can ask for is huge thanks to the fact that her reading, bizarrely is very advanced. She tends to always phrase things as she has read them on the packet so will ask for
“I want chocolate chip brioche rolls” very regularly which is a joy to hear. Sometimes she gets muddled up like today when she asked for doughnuts but meant Doritos.
There is still no chat, I never know what she has done at school, what she is thinking, I can’t ask her what she wants for her birthday or much else. 
It doesn’t usually bother me at all as Bella is Bella and it’s never been any other way but now writing it down I start to wonder will it come
I’ve always been insanely positive and said it will, but what if it doesn’t? I’m not really sure how I feel about her being an adult who is really not verbal in the way the world expects. 
One thing that doesn’t concern me is that she is smart, she gets what she wants and although  she needs help with the most basic of personal tasks she has some in built intelligence. She knows how to distract someone long enough so that she can nick their phone out of the other hand...and she has done…to strangers! Yes it’s called theft but we gave it back and she is very cute

Tuesday, 4 April 2017

Time to end the schools stigma.

My daughter Bella (age almost 7) goes to a special school *insert shocked/pity face* Sometimes I call it that and often get the faces I described above, but more often I call it an Autism specific school because that’s what it is. I’m not sure if this is a real term or one I made up for myself but I like it.

Thursday, 16 March 2017

Mothers Day

Mother's Day is fast approaching, that blissful day where us Mums are showered with praise, given a much needed lie in followed by breakfast in bed and gifts...that is if you're not a SEN parent...or even a single SEN parent!

My last seven Mother's Days have consisted of me being up very early, changing nappies, feeding the kids before myself and then visiting my Mum and Nan.  It's not a complaint it's just life. This year the children will actually be at their Dad's overnight on the Saturday so I will indeed get my lie-in (hoorah I hear you cry,) but not the breakfast in bed, gifts or the adoration of my children but let's not quibble over the details.

Thursday, 9 March 2017

Bedtime Stories

Logan, as all siblings has grown up in the shadow of his older sister.  Everything she does leaves an imprint on him greater than my words.  For years they shared a bedroom out of necessity but also I suspect out of a secret longing of his to have a closeness to Bella.  This feeling isn't reciprocated and is one of the reasons we needed to move to a larger house splitting them up.  He still asks me why he can't share with Bella anymore and it makes my heart sad as I feel I'm physically and emotionally putting up yet another wall between them. He doesn't remember how she would wake him in the night singing or banging the walls, he doesn't remember all the nights she climbed onto him as if he were nothing more than the duvet on top of him so she could pillage his toys as he slept.  He doesn't remember crying when she got in his bed and kicked him out or that she'd turn the light on at 4am making his eyes sting.  For now I'm happy for him not to remember but the imprint both positive and negative are made and sometimes they are very clear to see.

Monday, 20 February 2017

A letter about "mild autism"

Dear people who know my son,

Sometime for families like mine disabled is the norm. With Bella her difficulties are clear, it's obvious to everyone around that she has some very severe needs. Logan on the other hand for the most part appears very "neuro" typical, other than the fact he is head and shoulders taller than his peers. He is doing well and loving reception and educationally and socially is coming on leaps and bounds.

He is doing well.

Tuesday, 7 February 2017

The Empire Strikes Back (at the disabled)

One of our favourite things to do as  family is go to the cinema. Logan loves the films (and the snacks) and Bella...well she just likes the popcorn.  She struggles with new films, she'll usually watch the first 5 or so minutes and then drifts off back into her iPad and headphones. I take her for a couple of reasons; new experiences are good even for the children for whom new is a bad word, it is nice to do things as a family and although Bella doesn't watch the films Logan loves her being there, I can't always have someone there on tap to watch Bella as we are a single parent household and finally why shouldn't she go? She has Autism not the plague.


Monday, 23 January 2017

Wheelchair vs Pushchair

I've been very wary about wading into the debate that was recently addressed in the Supreme Court regarding who should take priority on public transport: wheelchairs or pushchairs.
"The case was triggered when Mr Paulley, from Wetherby, West Yorkshire, attempted to board a bus operated by FirstGroup which had a sign saying: "Please give up this space if needed for a wheelchair user." 
Mr Paulley was left at the stop because a woman with a sleeping baby in a pushchair refused to move out of the designated area when asked by the bus driver. She said the buggy would not fold.
He had argued FirstGroup's "requesting, not requiring" policy was discriminatory.
"  BBC News website

Now in an ideal world there would be room for all and this wouldn't even be an issue...but it is.

Thursday, 12 January 2017

Just keep swimming

Just in case any of you missed the news on my many, many social media outlets...I thought I'd shout a little about it here too. Bella swam on her own! She has been having 1:1 which is actually more like 2:1 for her swimming lessons for months. Water is a hazard for all children but for children like Bella who are unusually fascinated with it, it is a very real danger. Drowning is the biggest cause of death in children with Autism....but enough with the really happy talk *eye roll* 

Wednesday, 11 January 2017

January 10th 2018

Ok so the title of this blog is a little misleading as it is mainly about 2016 and 2017 (that still doesn't look right when I type it) but bear with me.  On January 10th 2016 Square Peg Foundation took a wild step into the unknown and launched our mobile sensory room.  Until then we had been Square Peg Clothing (which still exists don't worry) selling T-shirts and Hoodies with a need to do good. That is where the sensory room came in.

Wednesday, 4 January 2017

Christmas Passed

So Christmas happened! All in all it was a roaring success in the Square Peg household. Considering I've been at our Sensory Santa sessions for three Saturdays in December, our Christmas party on the 20th and had Logan's birthday on the 21st it came together quite quickly.

The Christmas party was great fun and doubled up as Logan's birthday party (cheap Mummy!) His actual 5th birthday went off fantastically too.