Bella never wants for much, it was a discussion we had recently as we think her limited range of ‘wants’ is hindering her communication. Basically she wants, ipad, orange juice, yogurt, toast, chocolate, chips and biscuits. See what I mean? She wants ipad and food! She will sometimes ask to go outside or upstairs (to nannys) or to Homehall House (where her other nanny lives) but part of me thinks she wants these because they generally have chocolate, chips and biscuits! She’s not very verbal but that doesn’t mean she’s not smart!
Lately Bella has shown interest in the bikes we see out and about and it’s been heartwrenching to watch her wanting to join in with other children but not managing a bike with stabilisers. Anyway to cut a long story short a friend has leant us a special needs trike to try for the summer and to say she’s elated would be an understatement!
Now I know she loves it I can start looking into a permanent one for her bus as with everything special needs it has an extra special price tag! When Bella wants something not related to technology we all jump through hoops to get it for her!
This video is brilliant, it’s funny, very funny. Bella couldn’t get more excited waiting for the discs to drop out of the Connect 4 set and Logan was loving creating the suspense. However look a little deeper and the video is brilliant because: a)
Bella is sitting at the table where she sat for her brunch. Ok it was legs and arms flailing all over the place and we got her out of her pushchair just before the food came but 6 months ago this would have been impossible. She has come on in so many tiny ways since starting school and sitting at the table is just one. Prior to this she needed a harness, but now, at home, she sits really well in short bursts (as long as she is interested in the food offered!)
b) She is interacting with Logan and waiting for him to make the discs drop. This is really the best thing. A year back she virtually lived alongside her brother without even seeing him. Don’t get me wrong these moments are rare and fleeting, but they happen! Just occasionally she finds him hilarious as opposed to when she usually finds him invisible.
c) Logan is loving making his sister laugh, he is a little comic and their interaction is probably 9:1. He still chats to her, tells her off and tries to interact but mostly its to no avail. On this occasion until she started laughing he wasn’t enjoying her taking over his game and had asked me to “putty back in da buggy!” Cheeky boy. However, when that giggle burst out of her he was hooked.
Like the title says, simple things. To most families these things are not even milestones…a five year old sitting/lying at a table (even if she was shrieking with her love of bacon and trying to pull the painting off the walls,) and siblings age 3 and 5 interacting for two minutes. To me it’s a big deal, I think autism and special needs make you more grateful, nothing is taken for granted.
Last weekend we had a trip down to Peppa Pig World at Paultons Park thanks to the Family Fund charity. We had an overnight stay which is always a fear of mine with two children on the spectrum. I usually won’t go anywhere for short periods as they’re too stressful (for me) and very unsettling for children (and me!) At home I use a stair gate to keep them in their bedroom and prevent ‘wandering’ but in a hotel room you don’t get that luxury! This however was a special case, B is in love with Peppa and her friends so we (including grandparents for extra hands) made the trip down from the midlands.
Here we go!
I have to admit that Paultons Park and PPW is fantastic! I was so impressed with how accessible it is, the exit passes so we didn’t have to queue (B can’t cope with queues,) the larger child/adult changing facilities and the flat wheelchair friendly site. We even took her on the mini train in her chair which she adored!
Princess Peppa Aboard
All in all the trip was a great success and I’m glad we bit the bullet and made the journey, we even stopped off at a very windy beach on the way down!
Wind and sand are two of B’s favourites!
L loved the windy beach can you tell ;-)
Thank you Family Fund, Travel by Inspire and of course Paultons Park!
This is NOT a sponsored post
While in the hotel weused our trusty tent for B which we use at home in lieu of a Safety Sleeper which were struggling to get funded. If anyone knows of a side opening one man tent then please let me know! Ours was only £20 but it’s a nightmare to change the sheets and get her in and out!
So for anyone outside of my Fb/Twitter world I thought I better update you on the fact that 21 months after we were refused the High Rate Mobility element of Disability Loving Allowance we finally won at our second tribunal!
We were appealing under the SMI (severe mental impairment) criteria and had to provide an excess of evidence when surely five minutes with her would have sufficed! So while DLA wasted time and resources (probably hoping I’d give up and go away) I just about managed to stay the course and the tribunal, the day before B’s 5th birthday went perfectly. Better than perfect in fact! They not only awarded the HRM and back pay, they also informed DLA that must pay it until 2018!! Wow, this saves me a whole other battle since from the next day they were due to start awarding the lower rate!
So that’s that. After almost two years of banging my head against a wall I can…relax? Not sure how to do that exactly but at least j can turn my attentions back to Square Peg :-)
Ps, back pay is already in!! 💰💰💰
You’ve been evicted now and have finally left the flat downstairs. I hope to never cross your path again and I’m sure you feel the same. I moved into the flat above you only seven months ago yet it feels like years. I have two small children and really had to consider whether moving into an upstairs flat would be manageable as they can be quite ‘stampy’ at times. In this area there is little available for someone on benefits like myself. I am a single parent and both my children are autistic, one far more visibly than the other. I came to believe this upstairs flat could be doable as it is a duplex and my older more severely disabled daughter would be upstairs away from you downstairs most of the time. She gets collected to go to her special school at 8.15am and comes home some time after 3.30pm. My son only does mornings at nursery but as we had such problems we go out most afternoons too. Both children go up to bed around 7pm so the amount of time they could annoy you I thought was minimal.
I was obviously wrong. Rather than approach me to say my children were disturbing you, you let it fester and grow until you became irrationally angry. You systematically threatened me in my own home, you would wait until the children were sleeping and then hammer on your ceiling and shout at us. You even had the audacity to call me a scrounger and tell me to get a job to my face. Apparently because my children don’t ‘look’ disabled it doesn’t count. I tried to explain to our agent to whom you complained about us about their autism and the fact that I can explain to my oldest until I’m blue in the face that running, jumping and banging are not acceptable. She does not understand! I lived on edge, shouting at the children for moving any heavier than a tiptoe. I bought rugs and reordered all my rooms to try and appease you but it didn’t work.
You both lost your jobs and believe you stopped paying your rent…anyway you were given notice. You blamed me. You waited until 10.30 that night before the shouting threats and banging started…then you pulled your ace card…the fact that my electric meter (because we live in a house conversion) is in your house meant you could play God and turn my electric off as you wanted and that night you wanted to. Off and on it went in the middle of winter you took my lights and heating and threatened to keep it off all night. What a lovely couple you are.
I was forced to call the police and you had to sign a harassment order. You blamed us completely for your actions. The official eviction didn’t happen for another four months and I lived upstairs from you paralysed by the fact that letting agents round here don’t generally rent to people on benefits and because of the bedroom tax were pretty much priced out of most accessible properties.
Before you left you shouted that my kids are “retards” and in a very poor impression of myself “oh I’m just a single mom with my mong kids.” I guess I’m lucky that until now I’ve never experienced such unbridled ignorance, I mean come on you even used a vile, derogatory word that isn’t even the correct insult for their disability. As someone pointed out, at least now they admit they recognise the autism. At the very least.
I’m sure you’ll never read this. I don’t think a blog about a single mum with two autistic children is really your bag. Anyway, at the end of the month we’re leaving and this building will stand empty. My daughter’s mobility needs are becoming more challenging and carrying her up and down the the stairs when she can’t (sensory difficulties, issues with change as well as Hypermobility and an unsteady gait) is getting too much for me. This last week since you’ve left has been a relief although I catch myself still jumping to tell my son to stop running about having fun. That’s another reason we’re going, this flat is tarnished with your ignorance and unkindness. You made me feel uneasy and often thoroughly upset and trapped. I am ‘lucky’ in the fact that neither of my children have enough awareness to know what was going on and at almost five and three they won’t remember you, or this house or the car you parked on our drive for months not allowing access.
Anyway, I feel a bit better getting it all off my chest and hopefully it’ll reach someone who needs to read it. Try and understand your neighbours and what they’re going through. It can make life so much happier.
Hello May, bye bye Autism Awareness Month (unless you live with autism like us and then it’s a 365 days a year thing!)
So we went on an Autism Awareness Walk last weekend. It was 3 miles and our SEN buggy was ready to be tested out. Poor L (3) had to walk and soon started moaning, luckily he got a little respite when B (almost 5) had a bit of a walk/run with grandad. She managed about half a mile (it was a slowwwww half mile!) and only bolted twice and lay down three times hahaha. Here is a little video of Grandad running with B, this is really the only way you can get her to “walk” anywhere otherwise she gets to distracted or overwhelmed! She’s so clumsy hehe, Hypermobility at its best!
Seems appropriate that for L’s third birthday today I have in fact made three birthday cakes. The first got seconded by Bs school disco and the second was sent in for his nursery birthday two days ago and finally number three for the big day. Nothing fancy but he’s happy with it (and I made it at 7am after being up past one building a train table so I think it’s pretty miraculous!)
For anyone who doesn’t know my other love (after my children) is Square Peg Clothing which I stared with my family after being basically annoyed with T-shirts declaring children with Autism to be “Autistic not Naughty.” etc. My daughter is definitely both!!
Well now we have 11 designs including a whole range of disabilities and are always looking for more. You can purchase them here. We have also set up the Square Peg Foundation as we are a not for profit organisation. Our aim is to open the Square Peg Sensory Bus and tour primarily Birmingham but also further afield. If you would like to show your support you can follow our Facebook page, we are just starting to fund raise and are looking for prizes for our Christmas raffle so if you sell/make/have something we could use please get in contact!