Last night I cried. Hard.
Harry’s behaviours around toileting (going for a wee) are taking their toll on the family. He spent over four hours yesterday screaming, shouting, self harming, thrashing about and hitting out at anyone who tried to help. There were different opinions on what to do, different ideas on how to help. Nothing worked. Nothing helped.
Eventually, Harry threw himself into my bed with his iPad and rested there. The rest of us watched a family film together downstairs. Then bedtime came and another huge meltdown began. I was already dreading bedtime having been up three times on Thursday night trying to convince Harry to sleep. His hysterics were too much. Andrew and I shouted at each other. I screamed. That NEVER happens. And then I cried.
I cried for my boy who I can’t help.
I cried for the ever changing challenges that come through life. There is no ‘growing out of it’ with Autism. There’s only management.
I cried for the moments we belly laughed as a family at the movie while my boy lay on his own upstairs. For the Harry shaped hole in the room that only I could see.
I cried for the life I dreamed of for me and my sons that we will never know.
Most days I am great at finding the moments I appreciate but some days I’m reminded of the moments that test me and the happy family moments that we will never know. There isn’t a word in the dictionary to describe that sadness only that it makes your heart ache.
Andrew and I are brilliant and our unit is amazing but please don’t think we find this all easy because we don’t. We just take it a day at a time because that’s all any of us have. If you’re having a hard time please know that you’re not on your own, that yes it is shit at times and that it’s ok...no, necessary, to admit it, that the good moments outweigh the struggles but we must give ourselves permission to accept that we find it tough at times. It’s only through being honest that we find our peace. Although cheese and gin helps me too. Cx
How brain dead you have to be to use a phrase "we all are different" towards people with illnesses for life, chronic illness and disabilities? This phrase can be used when referring to religion, skin colour, race, nationality, style, other things like this. Not illnesses for life, chronic illness and disabilities, cause that way you are creating distance between healthy and unhealthy people, you are saying that you are better than those who have dusability or somekind illness. It is just another way to say that we are disease and not get punished for that. I have chronic rhinitis, over the yers my eye sight has worsened, but I want to be treated like any other healthy humen being. For years people with disabilities and other illnesses all over the world are fighting to be taken serious as capable to do the same things as other people, maybe slower, and in their own they. It doesn't matter werher it is job or life in general. Especially, if you are publicly know person, you should think before saying or creating charity with this phrase, just to get attention, afterwards posting photos looking like you would be better some place else. Because unconsciously you hurt that way, and create distance. The same goes for fans, who follow these people like zombies, and agree with everything without thinking.🐏♈🔥 #weallaredifferent#but#healtissues#disability#shouldnt#set#us#appart#and#create#distance#between#healthy#unhealthy#think#before#openyourmouth#to#get#attention
thank you for making my childhood memorable.
for being my idols. thank you for giving me a place to escape to, for being my way of coping. when my life was a mess, i found the strength i needed within your stories. thank you for keeping me going, for giving me hope when i was hopeless.
thank you for showing us how to be heroes, that everyone has flaws and insecurities even superheroes, but also that you're so much more than that. thank you for being more than just fictional characters. for teaching us that it's also okay to lose and through this also teaching us the value of winning. for teaching us about the value of friendship and thriving. for showing that no story is black and white, for letting us decide how we interpret the story.
for giving me hope and for teaching me important lessons about life i hold on to, for changing the way i look at the world. thank you for making me laugh, for making me wonder, for making me giggle and for making me cry and for leaving me sobbing.
thank you for everything. i love you 3000. "you came into our lives as stories but you'll leave as legends" @marvel@marvelstudios@therealstanlee (it'd mean the world to me if you could tag them)
Vedolizumab otherwise known as Entyvio is a biological drug used for the treatment of Crohn’s disease and ulcerative colitis.
Vedolizumab may be an option if you have tried other medications called anti-TNF drugs such as infliximab or adalimumab but they did not help your condition or you may have had a reaction to these drugs.
This drug unlike others is not licensed for children (people under the age of 18) as not enough research has been done in whether it is suitable for the treatment of UC or CD in minors.
Indonesia tanah air beta..
Disini tempat lahit beta...
Kata mamah "walau kita sudah merdeka...
kita jangan sembarang berkata...
bukan berarti ga sepenuhnya merdeka...
tetapi sesungguhnya seluruh manusia itu dasarnya perasa..."
Ultimate wife fail - getting ready for bed last night hubby turned round and I spotted this little friend!
Then in bed chatting he starts squirming... I’d forgotten to remove it 😂😂 in my defence I was shattered and it was past 12 (I’m usually zonked at 11 latest!!) In other news I’m spending today attempting to clean this house with help from the whirlwind we call moo (toddler) 🧼
2 247 minutes ago
I hope they put this out on here
We actually do like boris Johnson, we dont just dislike anyone, it's like anything they have different policies and procedures,and we all agree or disagree with what anyone may say, this is just the reality of it,we just agree to kindness, me and mum xxx
Treat people with kindness
Please view comments for hashtags thankyou
Picking up the van to do our first load of moving today. It's bittersweet leaving Grandma's but overall we're excited. After 5 years of being consumed by illness and survival and recovery and day-to-day living, and all the to-ing and fro-ing we've done in that time, it almost feels like our real life is finally about to begin. So grateful for my health to have improved so much this year. Grateful for all the support along the way and the support we continue to receive. And grateful our new home has a little garden, where I can be still and restore amongst the nature and still feel close to Grandad. #newbeginnings#newchapter#newhome
Front cover of our new publication designed by the amazing @200590@dustcollective . Keep your eyes peeled all over Sheffield to pick up your own free copy including photographic work from Andy Brown @gemma_thorpe@origaminarwhal@ngibsonphoto and @karinalaxphoto -
Archive Sheffield exists to record stories of South Yorkshire. In a new commission for @healthwatchsheffield we have created a series of portraits documenting people in Sheffield who have made a significant contribution to improving health services and social care in the city. With a public exhibition running in the Winter Garden from 12th-25th August 2019, a new edition of our classic newspaper including this new work will be distributed for free to locations around the city.
2 41 hour ago
Day One & getting back to One Day, “someday somehow” 🤔🤔🤔 the first #AUDIOWORDS to say “zoo will explain all of this one day but first ‘work’ & then ‘play.’” WORK was get back face ✔️ body ✔️ name ✔️ identity ✔️✔️ & words 🌈✔️ IT JUST TAKES ONE TO (a) so their best (b) so their worst (c) be one part of a huge puzzle to @endPTSD#twitter & @stop.stigma.now since it was ONE DOCTOR, ONE COMMUNITY #LINCOLNPARK#CHICAGO ✔️✔️✔️💥✔️✔️✔️ fuck all y’all since I already knew what these parents wanted (free highschool & the easy A), the foundation skills being a nanny & listening & watching & why THEY CAN NEVER CONTACT ME AGAIN. Everyone goes buh bye because everyone is involved when dealing w topics of #INSANEGREED#truetreatment & this concept of “who works for who” because when my clients are kids w #specialneeds#disability , the world is the reminder THAT THEY WILL NEVER BE FULLY ACCOMMODATED except MAYBE NOW, they could be because the #emotion of disgust is still v strong. I can’t deny that & it’s present because of the (a) intensity (b) severity (c) duration (d) frequency & why IF #school#home#principal#anxiety#sobriety#UNION#CTU#alderman#ISBE#federalgovernment@senduckworth (thx for leading me back to #ROBINP . You showed me no one is in the office, instead on #vacation now reminds me of #corporatewaste & that #EVALUATION . That’s it. It was a decision made & now it’s over. This is #ptsDONE because it’s their #ptsDUH . It’s extremely stressful for “the next generation” & why I became a #teacher . I survived!!! Now, I’ll thrive & that’s growth or AYP meant for all kids (unless “so low” states by K-3) seen in #standardizedtesting & why IT’S ALL FAKE LIES. What is intelligence & survival in 2020? Honesty, to restore ability to self-police because if u don’t, ur life may be over & u don’t know it yet. This is INTRO ✔️💋
This is just like our CANp journey. The goals are necessary to inspire, motivate, make our children and adults move and take action to the right direction. Chasing goals and dreams is a never ending process for the so desired happiness. It doesn’t happen automatically. A meaningful journey requires constant attention - again, to the right direction. This is what we do and teach through Conductive Education. We teach to turn attention on what our participants had already achieved, what they can do now, what is possible to achieve and worth to work for. The results speak for themselves. When the attention is kept on the right things, have the continuity of action with enthusiasm and high motivation success comes in our way. It can come to anyone’s way. So please stop, look back, celebrate and enjoy the journey.
Ps. The credit for this picture is @heybobguy. #conductiveeducation#conductivelife#goals#dreams#aspirations#longterm#disability#specialeducation#cerebralpalsy#action#disabilitycoach#achieve#teamwork#partnership#happiness#celebrate#reflection#reflect
0 41 hour ago
This week Charlie has had some slightly more positive appointments with the Orthotics, OT and physio. .
They hope that with a different type of splint we may be able to train he heels back down from tippy toe position. .
They have also ordered us a standing frame so we can do some physio at home to teach him to try to stand again. .
He was luckily casted right away so the splints should arrive before he goes back to school so they can hit the ground running with intensive physio sessions (no pun intended!)
The deterioration in his brain is irreversible but we can only but try to help and re-teach his legs what to do so he may be able to regain the ability to stand again at least 😁
Also more positive news, he has been referred to the top Professor, master of Mito, in England so 🤞 he gets an appointment to lead his care!
Thank you to everyone for all your love, support and well wishes 💚
Session 2 of the week! Occupational sensory integration therapy. William managed to concentrate on different elements of play for 48 minutes today before he got totally distracted. Made over the magic number of 5 for continuation of an element which we learned today is the magic number for ‘hardwiring’ a neuro pathway. Well done William. You impressed us all today 😍😍😍 #neonangel#epilepsy#fighter#disability#angelmansyndrome#keto#neverisnotaword#bemorewilliam
Dzisiaj prezentujemy Wam Zosię @nasza_zosia - naszą nową, trzyletnią modelkę. Ta cudna dziewczynka jest ciekawskim, wesoło psocącym maluchem. Bardzo łatwo nawiązuje kontakt, a swoim uśmiechem potrafi rozmiękczyć każdego. Uwielbia psy, co można było zauważyć na sesji zdjęciowej. Zosia lubi eksplorować różne zakamarki i wymyślać bardzo kreatywne zabawy. Witamy Ciebie Zosiu w gronie modeli ZEBRAblue!
New wheels, who dis? 😉
I'm so grateful to the lady who lent me this chair. Twice this week, I've been able to go out of the house and do things without the pain, exhaustion and autonomic breakdown. Once for scripts, and today because I was depressed then realised that I can now just get out of the house and treat myself with a coffee.
It is so nice to just move freely outside. I didn't even realise that for the last few years, I couldn't notice the lovely breeze, the colour of leaves, the clouds in the sky, all because standing and walking took so much out of me - all I could focus on was don't put that out of place, don't step wrong, keep breathing, don't let yourself get too dizzy, push through the pain. These two days, I've got to actually look at the environment and be present in it, and that in itself is so freeing.
But it's not all rainbows. Outside is hardly accessible, especially the parts that able-bodied people created for inclusivity. Footpaths are so bumpy that they bounce the battery out of place and my chair stops. Those ramps in sidewalks for wheelchairs? Literally more than half of them are too steep to get up. I've gotten stuck and injured already, and learnt that driveways are easier, but obviously riskier. I also got stuck on the traintracks when a train was approaching which was terrifying. It was going slow, so I got off fast enough, but learnt to never try go over non-accessible tracks again.
So because of those issues, I've been fairly tense in the chair. I feel like I have to - otherwise I'll get injured going over pavement bumps, get flung out of the chair trying to go up impossible sidewalk ramps or get hit by a train. I know when I get a custom chair, it should be able to handle the rocky parts easier, but that's a year or more off at this point. All I can say, which has been said time and time again, is: PUT DISABLED PEOPLE IN CHARGE OF ACCESSIBILITY. Planning, development and testing. No able-bodied person should be doing those jobs, because they don't understand the needs.
But all up, I feel good. I have the chance to actually leave my house, and it makes me feel more human.
Go Louisa!! On Monday, my daughter Louisa is walking 4 miles / 6.4km along the Malvern Hills in Worcestershire, England raising money for @acornshospice
She is doing her fundraising walk in memory of her twin sister Milla, who passed away in December 2016.
Louisa is blind in one eye and partially sighted in her other and the walk will not be easy, over uneven paths. My wife and I will be walking with her.
Louisa has already raised almost £900 for Acorns who cared for Milla. Last year she raised £1,300 by running 2 miles around Worcester racecourse.
+++ «I PAPÀ AMANO IN SILENZIO E NELL'OMBRA» +++ I primi segnali, la diagnosi, le lacrime. E, poi, la voglia di riallacciarsi le scarpe e ripartire. Insieme, ma con priorità diverse. «Le famiglie che accolgono bambini con disabilità importanti sono spesso monoreddito. E sono obbligate ad esserlo». Lo dice senza mezzi termini, Chicco, che, a casa, prima di partire per il lavoro, ogni mattina lascia un pensiero importante. «Sono meno presente di Beatrice, perché la nostra vita deve continuare, nonostante l'autismo». Ma il suo cuore per Lilou non batte meno. «I papà spesso vengono dimenticati, non vengono raccontati. Ma amano. In silenzio e nell'ombra». Amano con consapevolezza. Quella che alla società di oggi ancora manca. «Prima che stravolgesse la mia vita, per me l'autismo era quello dei film: geniale, fantastico, eroico». Perché questo è quello che ci vogliono far credere. «Poi, nel tempo, mi sono trovato a cambiare pannolini a mia figlia adolescente, a parlarle con disegni, a dedicarle la vita». Tutta la vita.« L'autismo non è una fortuna. Se potessi prendere sulle mie spalle lo zainetto contenente la disabilità di mia figlia, lo farei subito. Ma non posso, quindi non mi resta che reagire, ogni giorno. Pensare, ogni giorno. Nel breve, perché l'autismo pesa, ma non ha il diritto di soffocare ogni istante di felicità. Non posso passare la vita a pensare al "dopo di noi". Voglio godermela, con Lilou». Insieme, per mano, oltre l'autismo. #Autismo#MaiStatiSullaLuna#Dad#love#autism#disability#sociale#family#life#live#fathrer#daughter
This post is inspired by Holly. On @lifeofablindgirl she blogs about the life as a blind girl, the title pretty much says it all. After reading her posts about social media, technology and sight I realized I never before considered what she said. Because I didn’t have to. An aspect of privilege I discussed in earlier posts of mine: As an able-bodied person I don’t have to think about accessibility. Holly wrote about how she personally uses technology, but also about how we all can make our social media feeds more accessible. Go to her blog and read the full list, it’s six different points. I only want to talk about one of them right now: Image descriptions.
You might have noticed that some people started putting image descriptions at the end of their posts. I am trying to build that habit, but I am not as consistent with it as I would like to be. Blind and visually impaired people do use the internet – I know, big news. There are programmes which help them doing so by reading out loud the website’s content. On Instagram this works only to a certain extent, because most of Instagram consists of images. Sure, programmes do get better and by now a programme can tell you on its own whether you photographed a tree or a human. Which human or tree specifically though, that remains a secret. Unless we start using image descriptions. All of us. Because we all are content creators and with that comes a responsibility. Instagram is an important social media and community platform. By not using image descriptions under our posts we hold up barriers. We actively exclude blind and visually impaired people from participating fully. And I really don’t want to continue doing so.
Image description: Digital portrait illustration of Holly. She is wearing a yellow cardigan and glasses. Around her are doodles of plants. Underneath the handwritten text: “Start using image descriptions on Instagram.”
Cjs reaction😧to seeing his bus🚌 again on the first day of school. .
Cj is always so animated, I love it!😂💕 Lastnight when we told him he was going back to school and riding the bus again, he literally stopped😟, eyes got wide😳, smiled slowly😏 and then SCREAMED, “yaaaaaaaa”, jumped and ran🏃🏿♂️around the house.
When I tell you this (not so little anymore😩🙌🏽) boy LOVES school😍🏣 that’s an understatement. I am so happy to know the novelty of school is still so alive and well in his heart💚 and he continues to find excitement😆 about going. I know many kids Cjs age and even younger than him dread😖 the idea of back to school. .
As much fun and joy that summer☀️ brought with all the endless activities⛹🏾♂️🥏🥎 and fun we had, im even happier☺️ to know Cj is equally as excited about transitioning back into the school year. .
Cj is going into 5th grade this year...when does first day of school stop becoming so emotional?😩😭
UGLY DUCKLING • Growing up I believed 1000% that I was an “ugly duckling”. Partly because those words were told to me repeatedly [pre-being adopted], but the more I heard those words, the more I started to believe them. I kept these beliefs straight through high school.
Then comes along college. It was my freshman year and I remember taking the bus to go downtown to this young, hipster-like town to get myself some coffee. I was wearing healed boots, a cute hipster outfit, and just a touch of makeup. I was complimented on my beauty and got my coffee for free that day. It was a rare gesture that’s stayed with me to this day.
I was never the type of person to get very much romantic attention, and honesty this introverted gal was quite alright with that most of the time. However learning to accept + appreciate the way I look had a domino effect in my life. At the same time I was being told I was ugly, I was also being told I wasn’t capable of anything. I think this is why I had such a difficult time deciding what to do with life during the pivotal senior year of high school. Then college comes and I’m starting to learn that I am a reasonably intelligent, quirky being with something to offer this world. But it was too late. My parents advised me to remain in my undesired major and I ended up having to drop out during my last year due to burnout and my health.
I’ve spent my twenties desperately trying to make up for lost time: discovering my interests, skills, passions. But mostly, I’ve had to work. I need a roof over my head, insurance, food on the plate. College was the time to discover and unfortunately I missed that opportunity. In recent years, I’ve been learning a shift in my life is needed. A shift towards not just working/crashing my days away, but allotting time for that which brings joy to my soul.
This was definitely a bit more rambling type of post, seemingly with no direction haha. Sometimes I just open my app and write away🤷🏻♀️.
Here’s some takeaways:
When scheduling out our chronic illness energy allotments, we need to make one for our passions + joys.
🌿 You are beautiful.
🌿 You are capable.
🌿 You deserve joy.
Keep fighting! 🥊
A year ago, I switched my stance to southpaw. Since then, I’ve been training super hard to land a strong cross with my weak arm. I’m glad to see the progress finally showing -slowly but surely! Boxing looks so effortless to those who aren’t effected by a physical disability, that’s why, despite taking so much longer to achieve, it feels so good when you see your hard training coming through. Always keep striving #boxing
81 1,33417 hours ago
Me: We're bandage brace twins!!
Me: Did you know you're a disabled icon?!
Bo: *What? No way! Blush!*
Me: Yeah! I'm just like you!! Sometimes my bones pop out of their sockets and then people FREAK out...
Bo: *Oh my gosh! Yes! I know, right?!*
Me: Yeah! But then we just pop it back in and bandage it up!!
A bandage brace queen!! A connective tissue disorder symbol!! A disabled icon!! Bo Peep!! 🐑🎀🦓
[Image Description: 1. Bo Peep and Annie pose showing their bandaged arms 2. Bo bashfully turns away as Annie smiles and gestures toward her 3. Bo raises her arms in excitement as Annie gestures to her bandaged arms]
37 1,24813 hours ago
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