#emotions #elves #YouTube #digital #marketing #families #care #community #socialmedia
Hi everyone, Hope you are all doing ok, what a great photo by Alexas and fab Quote!!
Make this a great day, yep that is the way I wake up every morning before I even get up that first cat like stretch of the day where you get the night kinks out of your body and you feel your bones all crack into place that long deep sigh of satisfied sleep. Its a reach out try to find your glasses and phone and if your real lucky there isn’t a kid or maybe 2 right next to you. Goodness know’s how many Ninja chops i have had in the middle of the night from kids feet or arms over the years. I have found myself plenty of times on the floor with a miniscule corner of the cover while they lap it up in luxury of my big bed. That’s parenthood though nothing to grumble about you miss it when they are grown up.
My kids are snorers teeth grinders, and sleep talkers, sometimes sleep walking insomniacs too. Night terrors or nightmares swiftly followed by sleep paralysis those are the worse ones though the sleep paralysis they happen when they just don’t sleep, or are really anxious. yes we did give sleep meds and melatonin a try Jake even went for a sleep study once we had to keep him up all night when we arrived at the hospital and they gave him some meds to make him sleepy it had no affect but by then he was anxious about the ECG being done so that fight and flight was real high. We had to abandon the test, that day when we got back in the car after the first thing he did was go to sleep. You know they always remember what they see after these episodes its no wonder they don’t like going off to sleep. we have had the witch,the dancing lady, the dog like creature a boy with a wounded head, they tell me they are awake and try to call but nothing comes out and they can’t move. they have always had this it i think is a big part of their struggle sleep disorders. They fight going to sleep because this happens. Which is why you probably find me writing a lot at night long after I have said good night, other than propping my eyes open with match sticks mum or dad doesn’t sleep till they are settled, but mostly me though hubby kind of wakes up about 3am gets up for a bit and keeps his ear out for them. I have found him asleep a few times at the kitchen table.
Before I go on to do all the author bit and other stuff I will just let you know the main issues we live with as an autistic family,
- Sleep issues , Insomnia,
- Food issues selective eating ARFID
- Demand avoidance
- Executive functioning
- Emotion regulation
- Tourettes syndrome
- Restrictive and repetitive behavior
- Hyper mobility
- Stimms/ sometimes self harm
- social issues.
- Depression / thoughts of suicide
- self esteem -self confidence
- Sometimes dangerous behaviours- and vunerable to abuse especially online.
- selective speach despite extenstive vocabualry/ or non vebal
- Teenage years and the dreaded hormones and teen moods yes major part that I think affects all kids but kids with all these other issues intensifi that 10 times. and for girls who also have PCSO undiagnosed for most of them teen years.
- late diagnosis equals harder to get support.
So yes many comorbid things all rolled into one, You notice I didn’t put autistic or wether high functioning or low well that is not the point, the point is people jude people on many things oh it’s cause they are autistic or go home treat them like normal kids they are smart, I would love for the people that say that spend one day in these kids shoes experience it from thier perspective, Yet still they are put through more tests to prove thier disbilities and how it affects thier lives by a stystem that just doesnt want to support or beilive being verbal and having a good vocabulary will suddenly take away all of the above it doesn’t and won’t . Yes big tabboo subject but very true.
Many parents or indeviduals will tell you the same the fights the appeals that high stress levels of having to prove something someelse can’t see just by looking at you. What we don’t want is appologies because our kids are different how many times have you heard someone say I am sorry when you say your kids are Autistic, or any other disability. but also i will say many dont actually view beieng autistic as a disability it’self it’s the other issues that give struggles for the day to day management of life that can be disabling for some not all. It really depends on the indevidual and thier very own perspective of it.
But lets also look at things slightly differently too.
Very good at special interests, wont stop till they know everything about there favorite topic, a loyal friend sometimes intense but it comes from a place of care. Are direct not rude, which in turn means wether it comes across as rude or not they will tell you straight a lot of people find that a bad thing me I like directness hurt me with the truth not a lie. When they feel passionate about something they work hard. They are drawn to other people who are similar they see people who are struggling and want to help, Jake always gives motivational messages when his friends feel down. Niki is suportive friend although is often let down by others. but she is able to have more than one friendship now and has been in a loving relationship with tome for over 4 years now. Jake has been dating since the beginning of lockdown. They are so funny, smart, soaking up all information they can, I have a lot of trouble keeping up with their learning they just want to learn everything, in there heads is this vast amount of knowledge you never know what is going to come out their mouths and surprise you. Debating skills they debate everything and won’t ever change their mind once they make a choice on a subject you have to show them proof.
If you meet them you won’t forget them. They are my sunshine on a cloudy day.
Our Josh he is the best son and big brother too, smart, funny,independent strong, and oh so grown up now we are certainly going to miss him when he goes home Sunday but he has to go back for work, having him here has brought new life to us all we are rested parents and ready for the next few months a head and my return to work , and schools when it eventually happens.
We have loved playing board games together this Christmas and watching movies listening to music and spending time quietly, its been so different and sad without other family but at the same time the rushing to entertain and worrying wether it will be too much for the kids with lots of people smells and people in their space, has made it a restful one.
When your kids beat you at scrabble .
I did win Trivial Pursuit but don’t think it counts as it was the kid version,lol.
Now on to the book marketing and digital things my author page is growing on Facebook, Instagram is slowly getting there, Twitter is still a tough one and I am now working on my YouTube channel, some videos with Hayley already uploaded but much more to come from an awareness and community point of view and all things author, i Tried to have it in keeping with my style of writing only now venturing into verbally sharing as well. The link to my YouTube is below
You know I think it is a big positive that this next step to videos is really taking it’s own course, I am thinking more business like for my book marketing. But i also sent some copies to friends which should arrive with them soon so looking forward to their opinion on the book, so its landing in America and should be landing in Serbia in the next few days. It already has been in Australia Aswell.
Any way my blog is almost finished for today ,Today is the 31st of December It Has just changed to last day of the Year, wishing you a safe at home new years Eve and a fantastic new year a head.
Its a goodnight from us all and a sleep peaceful with a smile from Emo. Good bye 2020 the year that the world stood still.
Good night much love Faye xxx