I think one of the hardest parts of raising a drug and alcohol damaged child is their ( or Hunters in this case) lack of sleep routine or inability TO sleep without medication.
Recently, over the past couple of weeks, he seems to have settled into putting himself to bed between 5 and 6 pm which for the purpose of my own education ( and sanity lol) I call 'Sleep research and the FASD child' I am DEFINITELY keen to allow/trial.
The key part of this sleep thing of his is that he wakes up every day at a time starting with the number 4 in it, MOST days of the week, unless the miracle fairy has called during the night and we get a rare wake time starting with a 5. Once but more like twice a week that number will start with a 2 or a 3.....and he doesnt go back to sleep. This is why we parent caregivers of FASD children are 'on the job' 24/7 7 days a week 365 days and nights a year...... forever (it seems).....
You might ask WHY I dont keep him up later at night? So he'll sleep in longer in the morning?
(HAS THAT EVER worked for any of you with your children?)
Believe me, we have tried that and all that means is he STILL wakes at the same times of the morning but has then not had the hours of sleep he's getting now with the earlier bedtime so then he cant cope with the day and gets tired and grumpy earlier in the afternoon so I go with the flow of this raging river and just let him decide when its the right time to go to bed.
Iv learned that its best to give him his morning pill at whatever time of morning he wakes, be it 3 am or 4 am, and give him a cup of COFFEE with soy or organic cows milk (the bottled processed milk is like naughty juice DO NOT GO THERE LOL ) then and whether he goes back to sleep or not, I try to, so then when I do get up at a number that starts with a 5 or a 6 in it (STRUTH) his pills have at least already calmed him and the morning is only half the nightmare it would be if he had to wait to have his pill then.
Dont freak about the coffee thing. Research this for yourselves. Coffee is a stimulant generally but depending on the person, it can have a calming effect, which in Hunters case, it does, so he has one cup over the first hour or so in the morning, I mix the brand 40-50% with Caro or decaf so he's really only getting half a tsp of caffeine per cup and depending how he's behaving he might get a second cup over the afternoon. Caffeine has made such a HUGE difference to his and my lives that I recommend everyone raising a child with fasd or adhd or any of the spectrum issue's PLEASE TRY IT. I use Stevia to take the bitter edge off the taste but only a 1/4 tsp. Make it milky and just above warm. (this morning I read in one of those scientific study pages that saccharin has a beneficial effect on some of these kids so Im going to get some this week and trial that.
Here (below) is an interesting and informative blurb about the FASD child that includes rare discussion about sleep disturbances and the FASD child. They mention caffeine here but to my mind, they haven't lived with a child with FASD so dont know what I know about how it works for MY child. Caffeine does not speed him up and he can have it at bedtime with better sleep inducing effect.
The article is otherwise, VERY GOOD.
The part I love in that article is their absolute understanding of what it is actually like for parent/caregivers. A worthy and simple educational read.
https://www.hindawi.com/journals/ijpedi/2010/639048/
It will be a long time coming and has been, for the Govt to become aware and set a support package for those of us raising Fasers.
Support in the form of MONEY.
For me, this would mean I could pay someone to come here to help me get some rest for my brain which is always on high alert. My Amygdala must be the size of a freakn Mountain by now.
Not a healthy state for anyones brain to constantly be in and a REAL struggle to maintain that peaceful state that my life craves,, to not react or over react and to deal with the constant barrage of challenges EVERY DAY.
I have always said I like a peaceful life and I want people to communicate well and get along so everyone has a great life.
That worked fairly well raising my own children, Their brains understood that life is better when you THINK with your mind and make the right choice. I had a saying with my own, that one child could ruin it for all children so they were all very peer controlled in that if one child started acting up, the others would say Dont you dare make us miss out on going to ....whatever was on the plan that week. With a Faser child, they just say I DONT CARE (LOL FML ) and they truely DONT CARE. They dont care of we go to where ever or not, So asking for thoughtful good behavior is not even realistic because they are unable to regulate so cant stop and think 'crikey I better not do that or we might not go to...where ever' because frankly they would rather stay at home anyway....
and Im so god dambed tired all of the time Id rather stay at home too but its not conducive for good mental health to always stay at home, unless, surprisingly, you are forced to stay at home like during Lockdown recently. HAVING to stay at home and not go anywhere was very good for us. Our relationship improved. We sat and watched the chickens every day with our morning coffee, out in the neighbors paddock on our deck chairs. We were able to relax. So we didnt go to swimming lessons and we didnt go to town, we visited no one and it was really restful. I think the lack of traffic noise was also a big thing. Both our brains were able to have a noise holiday. But thats not the real world unfortunately and once things opened up again, back to swimming lessons we went and we've started HipHop dance lessons this term which he does not want to go to but Im insisting he learn some set patterns of dance ( if possible) After two lessons Im acutely aware his brain cant do the turns, he cant keep up with the dance steps, there are too many people and the sets are way to fast paced for children with slower reacting brain wiring so Iv already requested one on one lessons which will no doubt come with a more hefty price tag for which Im going to have to fund-raise to cover. AND I am bound by the feeling I have to provide these things for him and we all know they are great experiences for our kids and some, like the swimming lessons are life saving, but its an every day battle, even if some days the battle is compliant and happily comes along, its still there, waiting for that trigger to turn it all to custard and we have to walk out and come home.
He isnt interested in team sport and I dont encourage it for the mere fact that any rough and tumble pay can be misconstrued as a physical attack and could end up in a punch up. I avoid exposing him to anything that will or could trigger any reactionary behavior that will reflect negatively on him. He cant be 'blamed' for reacting in a way that fits his brain wiring so prevention and distraction are always the better paths to take.
If there is a child in the midst of your extended picture (we have one in our immediate family) who is antagonistic, the battle is to keep THAT child in eyesight. Antagonistic children KNOW that they can provoke a child with FASD to react, and the antagonist never gets seen, only the reactor gets seen lashing out, so the Faser child is seen as the bad guy when in reality, if they are not provoked in the school room or play ground, they can be pretty placid beings.
You just have to avoid and prevent any provocation.
Example: last weekend whilst outside with the Grandsons (3) I called Hunter to stand his bike with the other bikes and not leave it on the ground, and as I walked away from them, I heard him raise his voice and say to his cousin DONT SMILE AT ME ****. To which **** said in a butter sweet voice, I wasnt smiling and before that battle could escalate and without turning around to face either of them, I said ****! We ALL KNOW, that the minute I turn my back, You ARE smiling at whatever child has been growled at and you are provoking Hunter unnecessarily and that is NOT fair, so dont pretend that you have not just smiled at him because we allknow you did - and I kept walking to the next wee job I was aiming for.
You know how sometimes a seemingly small thing happens that changes everything? Well, In that ONE act of my NOT turning around to face either of them, and having said that one sentence, something big happened.
The whole dynamic changed behavior wise and I have my fingers crossed for our next weekend together, because for the rest of the weekend, we didnt have that constant antagonism going on behind my back Hahahaha I wonder if he thinks I have eyes in the back of my head now? The rest of the weekend was a beautiful experience. My Antagonist gave it a rest and all of us benefited from that.
Our Fasers get blamed ALL OF THE TIME, and you Teachers who might be reading this, need to skill up based on that bit of knowledge quick smart. You will ALL have a sneaky if not blatant antagonist standing somewhere behind your back whose mission in life is to make a Fasers life Hell ( More Hell ...at school ...than school already is for them) They get detentions and stood down, and they lash out in anger because they have been unjustly accused and blamed for something they didnt start and they have no words to defend themselves so they retreat into themselves into what appears to be an angry place but really, they are crying on the inside because they dont understand and they dont know how to fix it.
