Autism is something that is close to my heart, my little boy was diagnosed last year. There are so many stereotypes surrounding Autism, even amongst medical professionals who are involved in assessing and diagnosing ASD. I hope that this blog post goes some way to helping spread awareness and understanding to help make his life (& ours!) a little easier.
I recently came across this fantastic visual which perfectly explains what the Autistic Spectrum actually is!
http://themighty.com/2016/05/rebecca-burgess-comic-redesigns-the-autism-spectrum/
This visual should definitely be shared - if only everyone had this understanding; I'm sure there would be a greater acceptance of Autism amongst adults and children.
When my son received his diagnosis of Autism Spectrum Disorder we asked the Paediatrician where she would place him on the Spectrum. Naively, we assumed she would say he was "high-functioning" towards the top end of the linear spectrum - but she didn't, we were told he has "Moderate Autism" due to his significant social communication and sensory processing difficulties and that she would place him somewhere in the middle of the stereotypical linear Spectrum. Almost a year later, we now have a better understanding of the Spectrum and realise that it isn't linear at all! We can clearly see that our sons numerous strengths and significant difficulties do indeed place him at various points on THIS Spectrum ... and his strengths/difficulties can move around within this almost constantly.
I would love for people to accept and understand that my childs' needs vary depending on the environment and other contributing factors. Just because he can cope in a restaurant one day, really doesn't mean he will cope in the same restaurant a few days later. He could have had a difficult day at school learning something new or following a different routine, his anxiety levels could be very high about something totally unrelated to going in the restaurant; or the restaurant could be particularly busy or noisy - all these factors (& many more!) contribute to how my child copes with a situation.
Autism is an ever-changing thing. My son can go several days, even a couple of weeks where his Autism isn't particularly obvious. Whilst we were going through the period of assessment, prior to his diagnosis I would find myself doubting whether there was in fact anything "wrong" - perhaps it was all in my head?! Then something would happen, we would have a family day out and he would struggle to cope in the noise / crowds, our routine might change at home unexpectedly, at school he may change topic and learn something new or he may struggle in a social situation and then BANG! There it is, high anxiety levels, sensory overload, erratic and seemingly irrational behaviour and extreme reactions to things ... once again his Autism is completely obvious once more, no, I definitely wasn't imagining it!
Autism is always present, it cannot be cured, it is a life-long neurological condition. But careful planning, early intervention and on-going support really does help to "manage" the condition. We know now that with plenty of preparation, some social stories or visual aids our son can have a go at most things and do fantastically! We aren't being over protective, over anxious parents as some people seem to think we are - trust us, we aren't doing all this just for the fun of it, if he didn't need it we wouldn't do it! We know the types of situations that are usually "flash-points" and every day is a balancing act of preparation and routine ... whilst also gently teaching him that things do change, the world isn't always black and white, and that "different" can be ok.
As a family we have learnt so much in the past 5+ years as we've discovered our sons' needs, and there is still so much to learn as he grows up. It is constant, extremely challenging and an emotional rollercoaster at times but the rewards we get are massive and the pride we feel when we see him achieve something that has been tricky for him is immense.
Thanks for reading!
x
I've just found this brilliant letter "To someone who doesn't have Ehlers Danlos Syndrome". I didn't write it and I think it has been shared widely online already, but it really sums up how I feel ... and how many others with the condition feel. I think just reading this will help to spread awareness and understanding - please read it and share ...
Thanks for reading!
x
Having Ehlers Danlos Syndrome means that many things change. Just because you can't see the changes doesn't mean they aren't real.
Most people don't understand much about this disability/disease and its effects, and of those that think they know many are actually misinformed. In the spirit of informing those who wish to understand...
... These are the things that I would like you to understand about me before you judge me...
I am scared. I don't know what the future holds for me. Will I end up in a wheelchair or will I be one of the lucky ones. If you find me being quiet and reflective, please don't think I am upset with you. I am trying to sort out my fears.
I am angry. EDS has taken so much away from me. I can no longer do many of things I enjoy doing. I sometimes have difficulty just completing simple tasks. If I appear angry please understand it is EDS I am angry with, not you.
Please understand that having EDS doesn't mean I'm not still a human being. I have to spend most of my day being very careful about what I do, and if you visit I might not seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, work and my family and friends etc, and most of the time I'd still like to hear you talk about yours too.
Please don't assume you know what is best for me. EDS has affected my joints and such, not my mind. I am capable of making my own decisions. If I make the wrong decision, it is I who has to deal with the consequences. I still want to be part of the "gang." Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me. Maybe I can't skate with everyone else but I can bring the hot chocolate and watch.
Please don't tell me you know how I feel. You don't. Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu (tired, achy and sore). Please keep that in mind.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years (EDS is genetic, this means I have had it since birth (even if I was only diagnosed recently, I have been suffering from this since I was born)). I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker that ever. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
Please don't tell me how “Auntie Mary” cured her joint problems by drinking vinegar or any other supposed remedy. If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought; and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. There is NO cure for EDS (and until they find the exact genes causing it and technology and medicine get to a point where something can be done about this, there will be no cure), only some of my symptoms and pain can be treated. If there was something that helped, then myself and other suffers would know about it (this is part of the reason I am a member of the online communities I am a member of). This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, and if something worked we would know about it. If after reading this, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don't expect me to rush out and try it. I might not even reply. If I haven't had it or something like it suggested before, and it sounds reasonable, I'll probably take what you said and discuss it with my doctor.
I want you to know that the pain and instability etc from EDS moves around. Please don't attack me when I'm worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I'll tell you. Just because I climbed the stairs yesterday (or an hour ago) doesn't mean I can do it today (or in another hour). Yesterday (or earlier) my shoulder was throbbing; today (now) it is my knee, who knows what it will be tomorrow (or later). Also understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing those five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to EVERYTHING that I do.Similarly, EDS and the symptoms of it may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
Please understand that "getting out and doing things" does not make me feel better, and can often make me worse. EDS may cause a secondary/reactive depression (wouldn't you get depressed occasionally if you had a body that could change suddenly for no reason, caused you pain 24/7 and could spontaneously rearrange itself through no fault of you own) but they are not caused by depression. Telling me that I need some fresh air and exercise is not correct and probably not appreciated - if I could possibly do it then, I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something else more exciting. EDS does not forgive its victims easily.
Please understand that I can't spend all of my energy trying to get well from EDS; it is incurable (and genetic, so unless I can change my gene’s I cannot change my disease/disorder). With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability like EDS is coming to the realization that you have to spend energy on having a life while you're sick/disabled. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with EDS or any chronic illness/disability.
As you can see EDS really sucks...
Finally, please remember that I am the same person I was before I was diagnosed with (started getting symptoms of) this; EDS doesn't change the heart and soul. I still laugh, I still cry. I still love and I still hate. I am me, I am not my disease. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you.
But most importantly, I need you to understand me.
Written by Michael (aka Deaderpool)"
My name is Claire, I'm a 37 year old, married, mum of two. After years of numerous referrals, appointments and tests; doctors have always been a bit baffled by me. Now, after many years struggling, but not knowing why, I now have a piece of paper with a diagnosis written on it - Ehlers Danlos Syndrome. So there it is in black and white, but what happens next?
After my diagnosis I had loads of questions buzzing around in my head - I spent literally days online, researching EDS, trying find out more. I strongly believe there are many, many people worldwide that are suffering with EDS symptoms that remain undiagnosed. Sadly it seems pot luck whether people are lucky enough to see Medical Professionals who actually understand EDS and correctly diagnose it.
Since my diagnosis (and recent, rapid, deterioration physically), I decided that I need to embrace this condition - it isn't going to go away, I'm not going to get better, I can't be cured, I have this for life!
So in a bid to be more positive about the future, and focus on what I can do, instead of everything I can no longer do, I set up Zebra Stitches! I have started making a variety of homemade bunting and home decor accessories to sell online (you can visit my store and see what I've been making here at www.etsy.com/uk/shop/zebrastitchescrafts).
I've decided to embrace EDS, to learn to manage the condition the best I can and to try and build a positive future for myself (and my family) despite the challenges I face now and will face in the months and years ahead. So join me as I develop my sewing and crafting skills, as well as raising awareness of EDS and also Autism and ADHD which are in my family too.
You can also find me on ...
Facebook https://facebook.com/zebrastitches
Instagram https://www.instagram.com/zebrastitchescrafts
Twitter https://twitter.com/zebrastitches00
Thanks for reading!
x
