Who are we and what are we doing?
Lets be honest we ask ourselves that on a regular basis along with the questions, “where am I? Are we there yet? And how about now?” But let’s give it a go anyway…
HI!
We are a Disney loving, autistic, LGBTQ+ supporting proud family, who are looking for a kick in the butt to get out more and stop being scared of enjoying life, We are aiming to do this as who we truly are regardless of any judgement and lack of understanding from others, (honestly that took the best part of an hour to write, it’s hard being honest, even if that is just with ourselves).
After being lifelong recluses we are dragging ourselves out into the world (coronavirus permitting) and living it true. And if while we are out enjoying ourselves and giving the children some new experiences, we are able to hopefully take a few of you guys along for the ride, maybe we can raise a little awareness and stop some of these words, “disability, autism, LGBTQ+, mental health” to name a few, being ‘dirty’ words and have them spoken with pride and without shame, we will consider this a win.
So introductions, I’m Kelly aka Momma, a 30 something year old broken (I have several physical disabilities and a sense of humor I use to protect myself, sorry if I offend), Momma of two. Married to Richard aka Dadda, a fast approaching 40 year old easy going guy who is accepting of most things (lucky really). We are parents to 10 year old Samantha, who amongst many other things has been diagnosed with autism, very high anxiety, and ADHD. We are also parents to 7 year old Riley, who also has a diagnosis of autism and was highlighted as highly suspected to have ADHD. However, they did not have enough evidence at the time to diagnose and have recommended we follow this up (we are currently doing so). Then we have Michelle/Shelley/Shell, aka the Auntie, aka Lela. Lela is a 40 something year old third parent to the two babies and makes day trips and holidays possible.
Lela (this is the name she mostly goes by, given by Samantha when she was really young and it stuck) moved in temporarily after selling her house in January 2019, and then house prices went through the roof, then coronavirus struck and due to the uncertainty of the market she is staying with us for the foreseeable future. It works for us, we can always do with the extra help with the children and why fix what isn’t broken. Oh probably should have mentioned Lela is my sister, as you can probably tell since she is living with us, we are very close.
Our diagnosis …es …es …es
I figure it is probably worth getting them out of the way early on as let’s be honest people wonder, I know I do. If I’m reading/watching people’s lives I want to know, and we are trying to be honest. Also these things are likely to impact our days out and the content you read about, so I promise I’m not doing this for drama or sympathy, if it is of no interest skip past I promise I won’t be offended, we are just trying to be transparent where we can.
Ok here goes…
Me, Kelly, I have a joint disorder called hypermobility disorder (sometimes diagnosed as hypermobility EDS but I was diagnosed back in the 90’s), it causes a lot of problems like poor circulation and bad balance, but its main symptom is it causes loose ligaments and tendons which then causes sprains, joint pain and damage. As a result of this I also have fibromyalgia. Unfortunately both of these have left me reasonably physically disabled. I have good days and bad days, I always use a walking stick but I also have a wheelchair and mobility scooter. It does affect me mentally but I won’t go into that today. It has severely affected me the last few years, and if I have a day out with the children I have a payback cost for a few days after, in terms of how much I can do, and pain levels experienced. I also have asthma, hyperactivity disorder, IBS and panic attacks.
Lela has highly reactive asthma which she developed as late onset at the age of 40. Unfortunately due to the trauma of several bad attacks requiring paramedics Lela has developed fibromyalgia, so she can sometimes on her bad days be seen with a walking stick. Lela also has IBS and various allergies that trigger her asthma.
Samantha was diagnosed with autism (what would have been aspergers if still diagnosed rather than autism) and ADHD just short of her 9th birthday. She was a master masker which is why we got a diagnosis late (and it would have been even later if we didn’t make the decision to go private, but that’s a story for another time). As she is getting older she is finding it much harder to mask her behaviours, we are also teaching her this is who she is and she has no need to mask to fit in, to be her true self. Samantha is also asthmatic and suffers from extremely high anxiety and PDA (pathological demand avoidance).
Riley was diagnosed with autism 2 days before his 7th birthday, it is highly suspected he also has ADHD. Riley also has hypermobility syndrome, this really affects his knees and as a result he has a mobility buggy which also doubles as a safe space due to his sensory needs when we are out and about. Riley is also asthmatic and suffers with idiopathic urticaria. This effectively means he develops hives all over his body from stress, heat, exercise, excitement because it’s a Tuesday. He has been close to anaphylaxis several times so we need to keep antihistamines close by at all times on top of the several he takes daily to keep it under control (under the pediatrician, we don’t just medicate for funsies).
Rich is perfectly healthy, I mean well one of us has to be right.
I know we are a right mess, but we don’t dwell on it, after all life is what you make it. We are hoping to raise a little awareness, show how we cope, and we hope others can grab help from a tip or two, but we won’t let it own us.
Now I know you are asking yourself where does the LGBTQ+ come into it? Why the big supporters?
Well we have a family member who is transgender and gay, they came out to us a few year back and we were fully supportive from the beginning and as a result are hoping to take a more active role in the community, whilst raising awareness for the charity and the great work they do in supporting the community, helping those who maybe don’t have the support our family member did and does.
Why living it true?
I guess it comes down to what living it true means to us and it is a few basic things.
It means not lying to each other. We are not intentionally cruel or unkind but we also won’t lie to one another, this includes the children. However we do keep things age appropriate and have been known to use the phrase “That isn’t appropriate for you to know right now, we can discuss it when you are older”. We guess the hope is that if we are honest with them they will be honest with us, and will know that they can come to us with anything.
It means not lying to ourselves. If we are having a hard day, a bad pain day or a bad mental health day, being honest with yourself will hopefully enable you to be honest with others. So you can then have that time to recoup and assess what you need from yourself and those around you. This is important day to day, let alone as a special needs family. So you can have the support as an individual and a family unit.
It means embracing life no matter how hard it may be sometimes.
It means allowing the children to grow into their true selves not the people we expected them to be.
It means not hiding our true form, autistic, disabled, LGBTQ+, or whatever that maybe, in order to make others feel comfortable.
We are not claiming to be experts in any field far from it, we are still learning something new every day with autism, Disney, LGBTQ+ community and ourselves, we are just ‘normal’ people going through life hoping to share a few experiences with you and maybe a little learned knowledge along the way. We will be sharing blogs on our day trips, holidays and everyday life. We will get it wrong, please go easy on us when we do after all we are all only human.
Hoping you join us for the ride.
Living it true
