As you could probably tell by my last blog I was in a bit of a funk and feeling alone. I have kind of been on auto- pilot ever since but trying to get back on track! Everything depends on it…my income does, my kids do, my plan to help my oldest son over the summer does…
So…thought I’d share Sean’s crowning achievement from one of the last times he was here. It’s a “keyblade” off of the game Kingdom Hearts…that he made out of K’nex using only one photo he found online. This picture reminds me that despite the homework battles, and meltdowns, and other challenges of having an Aspie+teenage boy all in 1…that I should not forget that along with that comes so many AMAZING things! I couldn’t even make this if I had step by step instructions…and even if I had the architectural mind to do so I’d definitely lack the patience! I want to spend the summer working with him on weaknesses, celebrating strengths, and developing coping strategies so he can be the best Sean possible! Any suggestions welcome!
Very discouraged and upset today…
Over the last few mos I have gotten in touch with so many adult autistics on both ends of the spectrum just as my boys are…
I post and repost the ppl i think say it best…
No one listens…
I dont post every little thing that comes along esp on FB I post those eloquent people, Ariane, Ido, and more…that say how it is in better words than I can…
No one listens…
If the people in my childrens life the most won’t listen, what hope is there that anyone else will?
I feel like I’m in this alone…I am an island… why does no one care…my kids deserve more from their family…at least an attempt to understand. Why watch every video and read every link that comes your way except these? I expect it from the doctors…that’s what they’re conditioned to do…but not those ppl who love them, who know they can do more…that know them.
This is a repost from my business FB page about WHY I am a WAHM. I have been in It Works for about a year and a half now and did little with it until recently…thus the first few lines of the post…
I’m sure people wonder WHY have I stuck with It Works for so long when I seemed to be failing at it for a long time, and WHY I joined in the first place since I’m somewhat shy and not a very good salesperson. HERE’S WHY…See those two faces below? I’m about to get REAL with ya’ll especially those who don’t already know me well.
Those two beautiful faces are the faces of Autism…two totally different types but Autistic nonetheless. I myself have struggled with moderate to severe depression for as long as I can remember…it has made it almost impossible to keep a traditional job for more than a few mos at a time. I joined It Works because for the first time I saw an opportunity to be successful…work on my good days and kinda muddle through the bad ones. How far I could go only depended on me…not on my attendence records or job history. It has been a longer road for me than a lot of people in my company just because I DO have a lot more obstacles than some…but that is my WHY for doing it. We say on our team “If your WHY doesnt make you cry its not big enough” It has taken me quite a while and some soul searching to figure out just what that big WHY was…it was there but it wasn’t concrete…I couldn’t quite figure out what it was.
Those two boys are my reason to keep going…to start over and pick myself up as many times as needed, to NOT GIVE UP! I’ve noticed my 14 yr old tries to use his disability as an excuse a lot…I would tell him NO that just means you have to work that much HARDER but I wasn’t exactly setting an example of that. I want my boys to be proud of me and to be able to provide for them and give them the things they need (and want), but MORE THAN THAT…I want to show them that no matter what obstacles you face, no matter what people say or think about you, no matter if you cant do things that “normal” people can, that if you work hard and follow your dreams you can do ANYTHING…AND BE SUCCESSFUL!!! …who the heck wants to be normal anyway???? Normal is going to work every day for 30 years and not having much to show for it, normal is having a boss that tells you what to do, playing the corporate games…It Works is my ticket out of normal and into the world where the impossible becomes possible! Where a young family on public assistance can be making 5 figures a MONTH within two years, where 30 yr olds can retire FOR LIFE, where a single mom can more than support her children and spend all the time she wants with them! THAT’S my WHY and what I want my kids to learn from me!
For those who don’t know, after a breakup I moved back in with my parents and my dad has Alzheimer’s/Dementia. I realized a while back that my two sons, though opposites had both in their own way prepared me to deal with my dad as he slowly declines.
E has given me 3 yrs of experience in guessing what someone wants with little or nothing to go on besides context or direction of gaze. Since dad’s short term memory is currently the most affected then I often only have “I need….” or “I’m looking for….” and nothing else to go on. I find that I am usually able to figure out what it is he’s trying to say about 8/10 times, and when his words are all mixed up, able to translate what he means.
From S I have learned how to deal with the irritation and to have patience. I have learned that to push them only makes them more confused and agitated. I have learned to ease into transitions from one activity to the next and to sometimes have to repeat a request several times.
Its interesting to me he even seems to be taking on the autistic’s sense of balance and not liking things to be out of place…he just came to me and asked if I thought the couch cushions needed to be moved…I hadn’t noticed but there are large stripe bands in a few areas and one of the cushions lined up with the band on the couch and two didn’t and it bugged him…he was so happy after he fiddled with them and got them lined up. And once again its something that to me is “normal” because I’ve been dealing with that somewhat OCD type behavior for years.
My boys have taught me, made me a different person…and by doing so have helped me be a better helper both to them and their grandpa.
Its the middle of the night (currently rnd 3 or 4 for us, lost count) and you hear your child crying. They are normally a pretty solid sleeper unless something is wrong, so you go in to attempt to figure it out. In my case, I know E’s SPD means that he has a much higher pain threshold, so if its bad enough to wake him up then he’s miserable.
Sometimes you get a clue..fever, tummy gurgling, vomit, diarrhea, stinky diaper, pulling at ears…but tonight you get none of these. Every parent knows that feeling of helplessness of knowing something is wrong but you can’t fix it because they cant tell you what it is for the first year of their child’s life but for us, it’s indefinite. Is it a headache? earache? sore throat? nausea? something else? Add in the autism, and sometimes even older children can’t point to the offending area, open their mouth enough to check the throat, or shake their head yes or no.
So you begin the cycle…try to soothe for a bit (sometimes he calms when I rub his arms or legs or massage his belly…sometimes all I can do is lie close and let him know I’m there) and hope they fall back asleep-but even then you’re not sure if they like what you’re doing or if they hate it and just can’t say so, then you give in and give them pain reliever just in case, more soothing, more looking for clues. Sometimes whatever it is the pain reliever helps so eventually its back to sleep. Other nights like tonight you repeat the same process every hr or so. Wishing you could read their mind so you could take their pain and discomfort away…or at least attempt to.
Right now E is somewhat calmed down, and has his iPad in the bedroom…yeah its almost 3 am but he’s calm finally so mommy is taking a few minutes to restore some sanity…and to give you a glimpse of our life. I think this is the single hardest thing about both his lack of words and his autism 😦
I started mentioning this in a comment but felt I needed to devote a post to it bc it really pisses me off (pardon the language)…had to hunt down things I’ve seen. Trigger warning…I use labels in this post only bc the post I’m responding to does…if I say something seemingly offensive and its not in quotes that’s because I cant find the original so just a paraphrase.
I read a blog the other day about the divisions in the autistic world (can’t find that either) that basically said that sure, “high functioning” autistic ppl could speak for themselves but what about the troublesome low functioning types that parents are institutionalizing and abandoning because they cant handle them anymore. The cant speak for themselves right? We need someone to be their voices whether the “high functioning” bloggers and activists want to admit it or not. My response to that is this…and this…and this…many, if not all, the supposedly “low functioning” autistics DO have a voice…if they are presumed competent and intelligent and are given the tools to HAVE one.
I’m not saying that it is necessarily bad parenting that makes the “bad” autistics…they’re just doing what they have been told to do everywhere they look but consider this post by a so called “low functioning” autistic (who of course is an anomaly bc *gasp* he can speak for himself I dare you to keep on reading the rest of the blog too). This is WHY more autistics, and more people who know and love them need to speak out. This is why parents need to stop trying to CURE their children and start actually HELPING them. I know you think you are but I challenge you to dive into the autistic world and let the future version of your child tell you what they REALLY need! We need to change the mindset and challenge what parents are told upon diagnosis (see here). The only people who even categorize a low and high or moderate functioning are doctors who are just guessing about autism…how about we put my son up against other 3 yr olds on an iPad or maybe just read this for a more eloquent version of that statement if it didn’t sink in when I said it. Why is it when my son can’t wave bye bye hes mentally incompetent but when he knows how do to things kids his age cant well then thats just some crazy once in a lifetime byproduct of his autism…either he’s competent or not…make up your mind!
As I’ve heard of echoed by many adult autistics…We need to listen to them, and make a better world for them…because one day soon our autistic children will BE adult autistics! And frankly I’m scared for my children…not because they’re autistic, but because of the global mindset about them that currently exists!