In my last post I was still riding high after celebrating for the first time the World Autism Awareness Day (April 2) but that was just a short break from the not so cheerful days leading up to it and then taking over again. You see, my husband and I have both been sick for the past few weeks, nothing serious, just a persistent nasty little virus that has kept us feeling miserable for way too long. As you all know, when you are feeling sick, you are not exactly a burst of energy and as a parent, use up what little energy you have to make sure your children are okay. Well, when both parents are sick at the same time – especially during Easter vacation in the preschools – it is a recipe for disaster!
I am this type of person that needs to go outside and breathe in some fresh air if I am to feel okay. Thus, staying inside for an extended period of time, let alone when already feeling miserable, is not optimal for my usual positive state of mind. I become ill-tempered and honestly, not the most fun to hang around with. So, the past few weeks, I have been rather negative to put it mildly, and somehow, the illness was bringing up all the difficult feelings and worries regarding the boys’ autism.
JA has been doing very well but has craved unusually much attention lately, really draining us energy wise. When I say ‘craving attention’ I really mean craving constant attention. E.g. when you are making dinner or talking on the phone and he wants attention, it is impossible to just say “honey, I am busy right now but I will be there shortly. Just wait a bit.”. He will not stop until he has received the attention he wants. And although it can sometimes be quite adorable, like when he cannot stop hugging you, it can also be very tiring when it goes on and on and on and on…
V, who had started repeating more words, decided to take a little pause from that activity once again and has not really been showing a lot of improvement the last few weeks. He also recently started a new habit of closing his eyes and scream out of the blue, always in the same peculiar way. First come two short screams and then finally one long, each louder than the one before. It’s quite strange and we are not sure if he is stimming (repetitive body movement but can also come out through smell, taste and – like possibly in this case – auditory) or not. His problem with falling asleep, already discussed in my post Autism Sleeping Problems, has never been as bad and then it is the impending result meeting next week that we have with the team of experts that has been carrying out his diagnosis process.
Two nights back, I had been there in the dark with V for three hours already, trying to get him to relax and fall asleep, when all these heavy thoughts caught up on me. I lay there beside him and started crying in silence while he restlessly rolled around, completely oblivious of my emotional state. I could not stop thinking about the unfairness of it all, how hard it sometimes can be and how difficult it sometimes is stay strong and positive. But what I found most difficult at that moment was how badly I missed some quality time with my husband – something we have experienced little of the past few months due to the boys’ very different sleeping patterns.
Where I lay in the darkness and felt the dark thoughts completely consuming me, I started sobbing. Suddenly V noticed but instead of realizing that I was sad he thought it incredibly funny and started laughing loudly. His lack of understanding, although I should not really have expected anything more from a two year old, let alone one who is very likely autistic, completely broke me. I surrendered and left the room heartbroken and inconsolable. Fortunately, my husband immediately understood and without a word, took over the choir of getting V to sleep.
I am not telling this story to attract pity. I am just emphasizing the fact that although we (and I mean that collectively, referring to parents of children with special needs) try our best to be strong and are usually content with our lot in life – it can sometimes be difficult. Then, family and friends can play a huge part in helping us overcome whatever it is that is bringing us down. And as my friend reminded me when I told her about my turmoil: “This too shall pass”. She was right, of course. Our challenges did not just vanish into thin air but as morning broke, everything seemed easier, brighter and better. I even thought I might finally be starting to feel a little better physically as well. And in regards to our boys, I know we still have a fight ahead of us but eventually, we will overcome them. Then again, new challenges will follow. That is the nature of life, is it not?
In my last post I included a wonderful video that showed an honest yet rather positive image of autism. As that was fitting to the positive tone of that post I thought it fitting to put in another video to this post, one that demonstrates the affects it has on a family to have an autistic member.
In case you need it, here is the link for the video.
I have always found that darkness amplifies my fears. During daylight, there is so much to see that can distract me, but at night, my thoughts travel through the darkness with nothing to absorb them, hide them, or provide a contrast.
When my son was seven, his insomnia was at it’s worst and he started throwing up every night before bed. This went on for six weeks. Several other things were going wrong at the same time in my life and I felt just like you. Overwhelmed by my lot in life, I suppose.
And of course, it passed. On to better days and different problems.
My son takes an herbal supplement now called CALMS FORTE along with MELATONIN. It has really improved the quality of his sleep.
Thanks so much for your post — you write with honesty and generosity.
Jennifer, thank you for your kind words obviously written with such deep understanding. Yes, I’m sure this difficult period will pass, but how difficult it is to wait until it does! ;)
This waiting game will most definitely test my patience. Looking at the positive side, perhaps my patience will increase with time and it will be easier to wait every time a new challenge is upon me.
I hear you … this is such a familiar scene at my house !!
Melantonin has helped me little one a lot – also Epsom Salt baths before sleep and lavender oil massage… these three remedies together have help us a lot!
It is really hard – almost impossible I find to stay positive and “on your game” going on no sleep for a period of time,
Baráttukveðjur :)
Harpa
Thank you for your comment Harpa! We have been giving V chamomile tea and bathing him before bedtime but I’ve never thought of salt baths before nor lavender oil massage. Thanks for the tip. I will check it out.
We have talked about Melatonin with the specialists but first of they won’t do anything until he has a proper diagnosis and secondly, they’ve already said that first they want us to try everything else. But I somehow have the feeling that we’ll end up using Melatonin … maybe along with some other methods like you are doing. But I’ll definitely try some soothing bathing salts and moisturizers until then ;) Thanks!
Good luck with it all. Yes the Epsom salt has magnesium so it really sooths and calms.
Yes the melantonin was a bigger step for me … After reading so many stories from parents is helped as well as many articles from doctors on the good affect it has on autistic kids that do not not make enough melantonin themselves. They need there sleep to have energy for their long days of training :)
The Epsom salt sounds so great! Will go out to buy right after Easters ;) …and regarding Melatonin, I couldn’t have said it better myself! Thanks so much! :)))
I know how you feel.I offer to sit for my nephew but my niece has to put him to bed. The only one that can handle him are his parents. His sister gets away with bad behavior because they are consumed with taking care of him. We also think my niece is a savant. We are afraid to have her tested. My nephew is very strong for 7. I walk with a cane and I cannot bring it in the house because my nephew would hurt himself or us. I feel so bad for my niece, she can’t even be sick. It’s more than 24/7. It’s her entire life. My niece wouldn’t have it any other way either. It’s brutal, it’s overwhelming, it’s constant. But it’s her love.
Love this: “It’s brutal, it’s overwhelming, it’s constant. But it’s her love” !! Thank you for this. I’m sure most, if not all, parents of special needs kids have gone through these emotions at some point.
I had forgotten to say my nephew sleeps through the entire night, every night. My niece gives him warm milk while in bed. This makes him sleep. This is the quite time in the house. My niece’s life becomes her own when she puts her son to bed.
Yes, there are definitely times where you wonder if you can get through the night. I think especially when you are sick – everything is so much harder – and on top of the lack of sleep, you are at your weakest. I have had periods of waking through the night and just quietly crying and just feeling so incredibly sad. It sounds like the move back to Iceland can’t come too soon. Having your family and friends around to support you is so important. It can only get better.
Thank you, I’m sure you are right. And I hope it doesn’t come off in the wrong way but it is a little bit reassuring that I’m not the only one experiencing such low moments.
Hugs, Ragga
Ég dáist að hugrekkinu og dugnaðinum í þér elsku Ragga mín. ….. Hugsa til ykkar og sendi ykkur kærleiksstrauma. Vildi ég gæti skroppið út og gefið þér eitt stórt knús, kaffi og nokkra létta brandara :) Haltu áfram að skrifa, þú ert svo frábær fyrirmynd og það er unun að lesa allt sem þú skrifar og taka þannig þátt í ferðalaginu með ykkur. Knossar CG
Takk elsku Christina mín. Þú (og fleiri) eru með okkur í anda! ;)
Elsku Ragga
Mér finnst ótrúlega gott að lesa öll bloggin þín, þau fá mig og aðra til að skilja betur og sjá hvernig ykkur gengur. Mér finnst þið ótrúlega dugleg og JÁ og V eru heppnir að eiga svona duglega og sterka foreldra sem halda áfram sama hvað á dynur.
Knús til ykkar og það verður gaman að fá ykkur heim til Íslands :*
Æ þú elsku besta djásnið mitt! Knús á þig! ;)
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