Day 4 Parenting Autism Real and Raw with Siobhan Wilcox

Hey, good morning, everybody. Siobhan Wilcox here, the founder of Autism Experts alliance and welcome to my Parenting, Autism Real and Raw video blog. You know, thank you so much for coming back and watching again and again. I'm just so excited that I'm getting such wonderful emails from everybody and comments from everybody about how this is helping them. And one of the things that surprised me most is that I'm getting comments from parents of children that are non special needs. So they're saying that it's also helping them become more aware and observant as a parent of their own processes and that it's not just because you have a special needs child that this is serving people. So I'm really, really. I didn't expect that at all and I'm so honoured. So, again, if you do want to comment, please do put comments below the video so other people can see it and be inspired. Please do email me, please, like the video. I'd be really, really honored. Thank you. I wanted to talk to you about yesterday, you know, yesterday again, My Lord, it just seems like every single day there's so many people I need to talk to. So yesterday and so many people I don't get. I mean, that's part of it. Not that I don't get them, it's is I don't get their calls. We're playing phone tag for a couple of days before we actually connect. You know, yesterday I left, I needed to get a physical therapy evaluation report from the hospital to give to the PT in the district. And you think that sounds easy, but that doesn't. That requires ringing the pt, ringing the medical department, them calling you back, them downloading forms, filling them in, mailing them in, waiting for that to come back. And we're. When I do eventually receive that, which should be in around a week, then I fax all that off to PT in the district. It's like really just go pick up a report and just hand it to a person. That's like one. What appears to be a simple task can create hours of paperwork. And I understand because, you know, there's procedures. They gotta make sure that I'm really the mom. They gotta make sure that I've signed and declared that I can share this information with other people. There's all these legal protocols that need to be put in place, but it's just challenging when those legal protocols take a huge amount of your time every day, you know? Okay, I'm just not making a video, sweetheart. I'm just making a video. Give me a minute. Love and then, you know, it's, it's, it's more the same when it comes to talking to service providers and trying to get help from the insurance companies. You know, you go on for an hour, you talk to three different departments, you give an information, you go away, you try and do that information and suddenly they say, no, no, that's not the right information. Somebody gave you the wrong information. You start all over again. Another hour on the phone and there's three or four departments. Everybody's not understanding the case, everybody's shifting you around all over the place. You know, it really takes away from the time that a parent can channel into their careers or creating income for their family. And you know, this has been a frustration for me because, you know, I'm in a foreign country from where my family live. And when I was in Ireland, I was able to create, I was able to have a lot of work with my career. You know, I did a lot of corporate training, stress management, personal development training, working with a lot of executives, a lot of administration staff, and also with a huge amount of wonderful charities that employed me to come in and work with their staff, with their people that were disabled or long term unemployed or recovering from mental health issues or had some chronic disease, whatever it was. And I would go in and I would work with these communities and I teach them self care skills, reintegration into society, assertiveness skills, whatever it was that was needed. Basically I was the whatever it was that was needed person in the soft skills stuff. And I worked constantly and I had this incredible resource of my family and they'd all, you know, watch my son for me when I worked and my husband traveled all the time during that. So basically I was, a lot of the time, you know, my husband would be away at least two weeks in every month. So a lot of the time I was doing the single mom thing, but it didn't feel like I was doing the single mom thing because I had my family there to help me. My mom, my sister, my next door neighbor was a special needs nurse. She would watch my son for me. So there was all these like, helpful backup I had that I didn't feel held back at all, I didn't feel restricted in my career. Of course, now as I'm here in a foreign country and I don't have that family, it's. And I hear this from so many other moms and dads out there, you know, and sometimes they're. What I'm hearing is that their families don't understand or are trying to understand, but just haven't got the knowledge, haven't got the skill set. Maybe they're older and the child is very, very overwhelmed a lot or it's aggressive and they just can't handle that child because it needs very specialized care. And of course, as a parent, we know the nuances of our children much more than somebody who isn't there every single moment of every single day. We have this intuitive connection frequently with our children. We can preempt a overwhelm because we are aware, oh, I hear that noise coming. That means grab the headphones fast, you know, put them on. So I do a lot of that in my day. I found, you know, I go around with a kit and my kit is my noise cancelling headphones from. I just got these at Walmart and I think they stopped doing these particular ones. The ones they do now are much slicker. But these were like eight, nine bucks, they were so cheap. And then I carry around these rescue pastilles from Bach flower remedies. And I love these because they're hard little pastilles and the kids can suck on them. So it gives them input. But also it's got flower remedies and stuff in there that actually help to counterbalance stress. I've been using this kind of stuff in a liquid form for around 20 years. I know it works. And then I have a sensory brush, which I don't have right beside me now, but I have a sensory brush I carry around as well. So if I see something coming out, preempt by handing the brush to him. You know, I've got a lot of distraction techniques I use. So, you know, we know all this stuff as parents. We learn what works for our kids and other people unfortunately do not. And it can be challenging as a parent to first feel that you're isolated and you don't have those resources and then feel frustrated because maybe people are a bit nervous or scared or you feel they don't want to really step up. But it's only their own. Their own unknowingness that is quite often holding them back, you know, and we have to honor that too. But it can be very frustrating. So I know I'm going around in circles today, but it's. I just wanted to share that with you. You know that parents frequently go into this place. There's a couple of things we. We can feel very isolated in situations because we don't always feel we have those resources behind us to assist us, you know, and when we do that, we start to disconnect and pull away from others. I've seen myself do this myself and I've seen it affecting my friendships, unfortunately, because it's challenging when you can't at the drop of a hat, go somewhere, you know, you have, somebody calls, hey, let's just take the kids bowling, let's just take the kids to the beach. Well, that sounds like really exciting event. But if you have a child with high anxiety and a lot of overwhelm, a sudden shift of energy like that can create massive waves of repercussion. You know, sometimes to get my son to go to the ice cream store or the beach or wherever most kids really love to go, it can create an hour to an hour and a half of overwhelm. And so frequently I find it's not worth it, you know, so I have gluten free ice cream cones and I have his favorite ice cream in the fridge. And so we use a lot of at home ice cream Sundays or whatever for ourselves. That isn't always the best because I, you know, my other son really wants to go to the ice cream store. He wants to go and get the cherry, the little swirls and the sprinkles or whatever that mommy doesn't have. But I found that if I, if I, if I shift things. So what I normally do, if one son is overwhelmed so extremely that he doesn't want to go to the ice cream store and it's created upset for the other guy who really wanted to go to the ice cream store. So I do ice cream sundaes at home and then afterwards I'll say to my younger guys that mommy will bring you to the ice cream store straight from school for a treat. And so I'll pick him up early before my son is home and we'll go to the ice cream store or I'll do it when daddy is watching, you know, and his dad can watch him or something like that so that we get our little special time together. We sit and we play scrabble together. We'll have this special time that isn't being created because there's an overwhelm happening and I need to get him into a quiet place. So I'm trying to give him special intimate time with me or his dad. I say to his dad, sometimes to his dad, I said, hey Paul, just take Aaron out now for an hour. You guys go off together, maybe bring him to the ice cream store, maybe bring him for a walk. He loves to go to nature, he loves to catch lizards, he loves to go fishing. Then maybe just take him out of the pond, bring him to the library, something, you know, Anyway, so it's all about negotiation. It's all about being flexible, going with the flow and trying to figure out in your life where ways that you can do that that works and keeps integrity within yourself, but also keeps integrity and harmony within your family. So thanks everybody for listening this morning. I hope you have a wonderful day. We've got a big day tomorrow. We're going to whip Bar mitzvah. It's the first time we've ever gone to that. So again, I'm going to be packing my sensory kit with my headphones, my rescue remedy, my sensory brush, and doing a lot of planning with my son, front loading, as we call it, telling him, you know, what to expect, that there will be crowds and it may be a little noisy and I'll just go with an open mind. I've had to leave so many church ceremonies at this point in my lifetime with him that if I have to leave, I have to leave. It's just going to be the way it is. I don't attach an outcome to it at this point and I don't get try not to get stressed by it because it just may be the day and it may be a day that goes really well and flows. So I never know. But have a wonderful day. And if you do want to find out more information, go to autismexpertsalliance.com and you can email me at Siobhanautism Experts Alliance. Again, leave your comments like it. Pass it on to other parents that need support. And I thank you so much. Love you guys. Thanks for watching. Bye.