Today, there was a family get-together. The boys had been with my mother all day and she took them there. I came a bit later and as always, my boys gave me a warm welcome when they saw me. I had been looking forward to meeting everyone as I hadn’t met all of them since we moved back to Iceland. It was nice to see everyone, especially the kids who’ve grown so big since last time I was in Iceland. I think they were also glad to see us, particularly because most of them haven’t seen us in a very long time – most of them, not since we learned that the boys were autistic.
It was a get-together with my mother’s family which is pretty tight. I think that from a normal standard, we meet up a lot. What’s most important though is that we don’t just meet up for the sake of it – most of us actually like it. Everyone knows everyone, knows more or less what is going on with everyone else, we support each other and care for one another. But as mentioned earlier, most of them hadn’t seen me – and even fewer had seen the boys – for a very long time. Of course, they all knew about the autism diagnoses and the blog and had heard news from my parents about what’s been going on but I guess hearing about it isn’t the same as seeing it for yourself.
The boys had been behaving alright. Sure I had to jump in a few times to prevent a blow or scold them for some inappropriate behavior but mostly, they were just being kids, having fun, being loud, and playing. But suddenly, a glass broke in the loft where the kids were playing and we had to jump in there and sweep all the kids away so they wouldn’t cut themselves. That’s when the trouble started. My boys didn’t want to leave and when they were removed from the loft, they repeatedly tried to get back up there. No matter how I tried to explain to JA, who usually can be argued with, that it was dangerous and that he’d have to wait a bit while we cleaned up, he wouldn’t listen. My little V was not listening either. He couldn’t understand why he wasn’t allowed to get up there and began crying which soon turned into screaming. Every time I turned my attention to one of them, the other tried to sneak in. And every time they were taken away, they got more upset. It was awful. Of course, the others tried to help but when the boys are in that zone, fixated on something they want but can’t have, they’re not very easy to deal with. Eventually I just had to take V away from the situation altogether to calm him down.
Fortunately, I was at a place where everyone knows us and cares for us and I knew that neither me nor the boys would be judged. Yet, I felt awful that this was taking place and that everyone had to see it. Therefore, it struck me when my cousin, who’s also a good friend of mine and this very understanding type, took my hand and said in a sincere, sympathetic voice: “Wow Ragga, I know you’ve been saying that it can be hard sometimes but now I really understand what you mean“. I forced myself to smile in surrender but think it was more of a grimace as I was very close to tearing up. It wasn’t because I was angry or annoyed or anything like that. I actually felt a little relieved. It was actually nice that someone was just honest about it without judgment or pretense. She just said it in a way that was simultaneously sympathetic yet without making me feel like she felt sorry for me. I felt like she was neither trying to make me feel bad nor good. It was just the honest truth – an acknowledgement – nothing more, nothing less. And while it did make me feel better, it was also difficult not to break down in tears. I think it might be because you know it so well yourself but don’t want to burden everyone else by constantly complaining about it. And just hearing that someone is beginning to understand is both nice and difficult at the same time.
Now I See What You Mean
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How do you feel when people around you realize how it can be? Good? Bad? Both? And for those of you that have years of experience, does it get easier? By all means comment below – I want to hear from you. Thank you. xx Ragga
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I am always either crying or laughing after reading your blog Ragga.
I don’t really know if people around me get it, I often fell like they don’t. But what is more important I don’t always get it. When my son has a tantrum I often feel like I am failing, that I am not doing this right. When my son, who is usually very sweet, has his mind set on something it seems to be really difficult for him to accept that we are actually doing something else. At these moments he does not seem to understand anything I say. I am hoping this will become easier as he gets older, and hopefully will be able to better communicate his wishes.
Thank you for your comment :) …I hope that, despite sometimes making you cry, my blog makes you feel better either way – whether it is by seeing the funny side of things or by the mutual understanding of going through similar things. In a very selfish way, it does make me feel better when I hear about other people who’ve been through this path and survived. Let’s hope together that it will indeed become easier as they grow and mature, shall we? :)
Hugs, Ragga
My son is 15 now. I remember when he was about 4 walking home from the shops with a friend. Her 4 year old son and9 year old daughter and my baby daughter were there too. There was horse droppings on the path and my son walked through them before I could stop him and them decided he didn’t like the smell and feel of it on his shoes and wanted to take them off. We were about 20 minutes from home do I had to try using baby wipes and grass to clean his shoes. Not pleasant. My friend was trying to keep everyone else safe while I was doing this. Afterwards she said now I know what you mean. Validation was great. We never have incidents like that now because my son is verbal. Other issues take over but every day is easier and even though he is a teenager my son is a joy and a blessing on our lives and I wouldn’t change him. :-)
Thank you Clara for painting the future in brighter colors :)
Ég skil hvað þú meinar. Ég hef staðið mig að því að verða pínu ,,fegin” þegar mitt krútt sýnir þessar hliðar á sér þegar mitt fólk sér til. Og það er einmitt vegna þess sem þú lýsir, það er áhrifaríkara. Það er ekki gaman að reyna að lýsa hegðun barnanna sinna og ,,kvarta” undan þeim, og ég fæ meira að segja móral yfir því að skrifa þetta! En svona er þetta og er víst allt hluti af því að fást við þetta allt saman. Mitt krútt hegðar sér ekki alltaf eins og til er ætlast, t.d í veislum og það er erfitt að útskýra fyrir áhugasömum ættingjum sem er að reyna að spjalla við hann, afhverju hann svarar út í bláinn eða svarar bara alls ekki :-) Þá er oft stutt í tárin hjá mömmunni, hvað þá þegar tekin eru svona köst eins og þú lýsir. Þú ert hetja :-)
Elsku Edda Karen, þúsund þakkir fyrir þessi orð. Þetta er nákvæmlega það sem ég er að tala um og trúðu mér – það er oft stutt í tárin hjá mér líka :) …og eins og þú segir, maður vill ekki vera síkvartandi því þeir eru oftast yndislega ljúfir og góðir og eru jú, hvað sem tautar og raular, litlu hjartagullin manns.
Annars væri rosa gaman að hittast yfir kaffibolla einn daginn – kannski eftir jólaannríkið? :) Endilega verum í bandi ;)
Ragga
Takk Ragga mín, það væri rosalega gaman að hittast yfir kaffibolla. Strax og jólabrjálæðið klárast! Hlakka til :-)
:-)
Having two boys at opposite ends of the autism spectrum, I understand what you are saying – I have a similar reaction when people acknowledge just how difficult the disorder can be. After 5 & a half years since initial diagnosis, l have been through a roller coaster of emotions yet l somehow manage to maintain some sort of sanity. Thank you for writing such a wonderful piece and for giving us an insight into your journey <3
Thank you for your kind words Roxanne. It’s good to hear from someone who has a similar experience. My boys are also very different in their autism and can sometimes trigger each other in a bad way. As an example, JA is rather sensitive to loud noises and when V has a meltdown and starts screaming, JA simply can’t stand it, puts his hands over his ears and starts screaming himself to block out his brother’s screams. Naturally, this works as oil on fire for V who screams back even louder. And it isn’t easy to deal with – especially if you happen to be alone with them. Who do you calm down first?!? :) It’s a vicious cycle. But as you say, somehow you manage.
…and let’s not forget that most of the time, they are well behaved and adorable :)
xx Ragga
There are the people like our kids’ piano teacher who asked one day, “How can you stand it?” Then you know that other people are seeing it, and feeling a little exasperated. But she still taught them for 8 years. Most of the time my defense mechanism of not feeling anything at the moment of impact was effective. I would ruminate about it later. Sometimes incidents like this would bring tears to my eyes, too.
And then there are the other people, like my sister, who came to babysit for the weekend when my kids were in their young teens, who really help and understand that autistic kids in their teens still need a babysitter. And my mother, who brags about our kids.
Wow Ann, you never cease to amaze me with your comments – in just few words you somehow always manage to say it all in exactly the right way. Your “defense mechanism of not feeling anything at the moment of impact” is exactly how I feel. When things happen, I just get into “how can I fix this” mode, without allowing myself to feel too emotional. And then, later, I stay up at night because I can’t stop thinking about it. Do you relate?
The second part of your comment almost brought tears to my eyes. It means so much to have people like that in your life. I’m glad you do. We do too. Thank you so much for this wonderful comment :)
/Ragga
Ragga,
I have had many sleepless nights as I chew on the events of the day. But the laser focus has to be on the kids in the situation. One of the things that got to me regarding our kids’ piano teacher was that she said it in front my kids as we were leaving her home. Did she think that my kids did not hear that or understand it? Did she think that autism affects their hearing and understanding?
Well, a good thing about that defense mechanism is that it kept me from answering her in anger. My answer was, “I just do it day by day.” (Or something to that effect, because that is how I did it. That is how we all do it.) Even though I suffered some anguish over this, I forgaveher. I kept in mind that we needed her. She was one of the pivotal people in our kids’ success.
By the way, both of these answers will be appearing in some form in my blog over the next few months. Your posts inspire me and help me remember what has happened in our kids’ lives. The goal of my blog is to help other parents who are in the midst of the struggle to see the light in the tunnel or the fog, and to thinking about planning for their kids’ independence day, whatever that may turn out to be.
Nice to hear that my blog helps and inspires ;)
Hi Ragga, although I hate it when my little girl has a meltdown I can’t help but feel relieved when she does it in front of someone for the first time. Mine and my husband friends have now all witnessed a true Maddie meltdown and i feel that they have now seen abother side to Autism and helps them understand when we say that something might upset her (no matter how small or insignificant it may seem to them or their children) xx
Yes, I know what you mean. Although it’s never pleasant – it makes people realize how it can be sometimes. And then again, most of the time, at least in our case, nothing happens and nobody notices anything unusual or different. Which is of course great but can also be deceiving if you haven’t witnessed a meltdown.
Well it’s going to be very good for you and your family. You are very lucky to be surrounded by such understanding and loving people. It’s often hard for families to act the way yours have. The not judging but helping is tough for some families. Few can do it. The families that do the best with Autism in the family are the ones that ban together, are supportive, don’t judge, and work well together. I love how your family watched you handle the moment and didn’t just jump in or jump on you. This shows a family that has respect for each other. Your going to be more than fine you and your family. You got a great support system. When parents and kids have a great support system they can never fail. Hugs to you and the family wishing you all the best over your holidays.
Nice hearing from you again honey ;) …thank you for that lovely comment – exactly the positivity I needed right now. Hugs and kisses, Ragga
I can remember what it felt like the first time I realized that other people, people who knew me well, didn’t know how bad it was… Good post, you make me think. :)
Thank you Mylinda :)
Strákurinn minn er 4 og hálfs árs og er greindur með dæmigerða einhverfu. Mikið rosalega finnst mér gott að lesa þetta af því ég upplifa þetta nákvæmlega sama. Gott að sjá að aðrir eru að hugsa það sama og ég ;)
Maggý, það gleður mig að heyra að þú samsamir þig við það sem ég er að upplifa. Ég held nefnilega að þetta sé oft raunin, þ.e. að hver er í sínu horni og finnur fyrir einhverjum ákveðnum tilfinningum yfir einhverju en vill ekki íþyngja öðrum með því að tala um það og þar með halda allir að þeir séu einir um að ganga í gegnum þessa hluti.
Takk fyrir að kommenta :)
Ragga
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