hello and welcome to navigate autism with jane land i'm your host jane little britain and today i want to start by talking about flexibility and how important that is to you and your child and your family and of course you already know this and i do too but i've been reminded of it again very recently but my son has been going through some challenges at home in this school and the reason i think it was harder for me this time is because he's come a long way you remember that i homeschooled him and before i did that he was virtually in his own world he would sit in the corner of the bridge his eyes fogged over and i don't even know that he knew i was in the same room with him because i was with look at me or he'd run circles laughing as hands and then we started the homeschool process and i learned how to interact and connect with him and he became more and more social more in my world homer we experienced so much joy together and as all of that happened i transformed i became calmer more relaxed more flexible guess what so did he and we've been enjoying this really nice relationship we're both growing he's still got some challenges but for the most part he's been fairly calm very interactive and then all of a sudden this week things have changed i don't know why it could be the moon and parents of children thought system you know what i mean about that it could be anything maybe his tooth is hurting i don't really know because he's not very verbal but what i do know is how i was responding and i was more anxious more straus found myself doing what i hate which is what we all do which is judge autism and show it ourselves and when i'm in that place i'm just not flexible at all everything gets to me as a short temper and the end result is my whole family feels it and especially my son so it's not helping anybody what the good thing is is that i'm aware of it and i know that i had holes to get through it i don't always want to use them because sometimes i just need to be in that place of feeling those emotions but then when i'm ready i pull myself out and i say i need to be more flexible so for instance my son has some chores we ask him to do like take out the garbage and not a day that he's just not able to do it because he might have a quick temper and if i ask him to do something he might bang his hands on the table or rain his hands or try to scratch something so what i say is you know it doesn't matter you don't need to do the trash today what that tells me or what i tell myself is i'm not giving him something or giving in to anything i'm helping him take care of himself he's not losing a skill he's not losing his sense of responsibility i'm just giving him a break and don't we all need a break some time i certainly do so i find myself trying to be more more flexible for instance i am really good at creating time for myself but not this past week every time i would be eligible or planning to work or some time with my daughter or do something other than hang out with my son he would find come grab my hand and take me somewhere and i knew that's what he needed and so sometimes i would say no if i needed to but i really tried to be flexible to go with him and what happened is my flexibility and my d s helped him be more flexible and calm and get through his day and so i wanted to share that with you because it's very often that we get into our own routine and we're so excited about the progress that we see in our children and we want to maintain the progress we want to continue to inspire them to grow to take responsibility to be independent and when we see those moments when they just can't do it to say it's ok that it's not that they're regressing or that i'm doing anything wrong or they're doing anything wrong let's just be flexible and i'm going to show you a different way of being flexible a little bit later because i like to demonstrate some some games and activities as you know in the show you how i use flexibility in that way as well while i was going through this week i was really relying on the support of people that i could talk to to vent and seeking information and that made me think of the guests that i have here with me today because they have formed a facebook group that is very popular and parents are excited to join because they're getting that resource other parents to talk to  want to make sure i get that right because i want to to tell other parents if they could possibly join this amazing facebook group but i want to tell you that it's helped me and i see every day new people joining so i know that the word is getting out there and hopefully we can spread that word even more because it's been it is a great resource and i want to ask you first before we talk more about that let's get to know you a little bit more but what is your story  i didn't really have anybody to talk to at the time hospital kind of dying as your child pushes you out the door with no resources at all though i started going on my own and looking for things and the of looking at google you find everything so i started looking for support groups and i found them they were all over new jersey which was a wonderful thing and they helped me a lot but they were based all over new jersey so i knew i can talk to these people but they're all over the place i might not ever meet them so that kind of throw for us to the page like are a general area mercer wonderful and so you said you have a son now who's siblings too right that's definitely true because more stress now because they don't know which way to go you want to hold both of them yes right individually and together to have a family unit you know you all love each other and they're completely different so it's very hard and well you've already shown us you're strong out there and we're really glad that you're here with us so that you and stephanie so what's what's your story well i have a son his prodi and he's seven and he was diagnosed with autism when he was about two and a half and as soon as i learned about that i had to start advocating for him and figuring out what he needed you know what groups are out there what supports what would we have to do next and it becomes very overwhelming and you feel a little bit alone in that and i've learned how to not be alone in a big part of that is the group and meeting karen and her starting every things so but each day is a learning experience and once you think things are the same you know when they're going good something changes that you need to learn and the only way to really learn about all of that is through the support of other parents so in order to do that you know i go to the group and i let everything out that i need to let out and look for everything that i need at that moment to make it through my day i love you let it all out as i do that a lot and what that means is a very safe group right is a safe place where people can be vulnerable and love and support and the response is always i hear you i love you with you sometimes oh i have this right that's important because we don't always have that or feel like we have a safe space for people who get it right there's no judgment there's no judgment you can just let it all out because we've all been there at some point or at least somebody has and we can all feel that and you know that it's ok to have those feelings and to just let it out and that makes you a better person inspired you to form this group and this is not just a group that you put on facebook and you don't monitor your is there all the time and putting links and information and it's like a full time job is a full time job so what is behind you to do that well i'm a stay at home mom so i have the time with the catering school but check everything and had like you said we just wanted to support other people and we wanted to support ourselves it felt like me and her for the longest time and we were both at home bringing our case the school you don't meet many mothers that way because it takes on that or is there already in the classroom so we met up every day we started going to have coffee and drinking or you know having breakfast together and saying and then it just after a while or like is it just me and you because it doesn't feel like anybody over here has an unsuspecting child but us now you went  something similar that you had already done it was really happy that you'd already done that but there were must have been twenty families or more that came how have they found you what are you doing to help we have cars made me lay them around in the air and i put them in the doctor's offices and dentists restaurant everywhere she brings them to the library at the schools yes it's easier to get them out because they have special classes if i'm in a folder for the other children home it's all word of mouth and just getting it out there telling you know our members if you know somebody have them join have them have the support that we have you know tell tell people let them know when you know us become a larger groups who we have a huge support system all over mercer county and outside so we can get together so we can talk about a variety of things and we have a variety of age groups on the page so this way families have that support at whatever age their child that and you know some of the families that have older children can help with the younger children and what they need to go through and you see that often on the page a but we research first because we want to be a safe place for the parents right yes so we look to see if they're actually from the area and if they have an autistic child we asked them questions when they were going how did you hear about us if you have an autistic child do they attend school in mercer county then all kinds of questions that go with it and we wait for a response if we don't get one you know all right just leave it there till we do ok but let's it's good to have that kind of a process to go through but the news that you have  you know the great does this or a great speech therapist and i thought maybe we should invite them to the group but this really close to the parents so how would they be a speech therapist or someone who wanted to say hey i'm available if if you'd like to reach out to me how would they make that we have the parents and grandparents only keep it private so for venting reasons and you know we don't want to offend anybody that's not on the page but if they have any kind of wires or resources i ask them to send it privately to me and then i'll post it on the page as slaying the parents still feel comfortable they're not going to talk about a speech therapist that they didn't like if they're on the page that makes a lot of sense that it really gets the big hits privacy because everybody is so different and who they like and who they don't like and what works for their child and they want to have that safe space for them to be able to say this didn't work for me and i need something different but also to tell parents because maybe they should know maybe thought that person is not as wonderful as we think or might want to go to or not help some families ovoid that speed bump thanks we have lots to go over but i like to do that so that you post well i like you said the flyers and sometimes there's an event coming up or someone will say have i would like to invite your families to this or doing a sensory you know movie or something of that nature and your own they go up all the time i think you're on there literally many activities locally which is great that you have your like your finger on the pulse of what's going on in mercer county and you're sharing ask people know where they can go and as you know specifically for children with autism the menu we get all all the corners are looked at first to make sure it's a safe space for the families that it's you know a lot of times we like to have a private room it's much easier for the family so you know that your child is contained you're in a safe space for yourself there's no one else around a lot of families have a hard time and that was a big point of doing a family dinner night they feel very uncomfortable going out when people are not quite comfortable with the stairs and the things that they get it it's difficult no matter how much you let it roll off it's difficult so we want to put them in a place where they don't have to worry about that and they can be how they want to be in their child can just be themselves as well and then our children get to know one another and you can they can form bonds and it just gives them that place so that's one of the things that we do with the family dinner nights and we've been trying to create something to do different mom's night that not made out we did one party that we made some jewelry and we did that so we're trying to work on those things and and you know just get families together and you know get the parents out for the evening just so we can relax and you know have a place for the kids to relax and have fun  for me it's been that there are a lot of families that i can reach out to for so much more than i even imagined so there's always a resource the matter what i post somebody comes back with something or some type of guidance or you know you think you have been the only one that this has ever happened to and someone will come right back and say nope just happened this happen to me five minutes ago so you just don't feel so alone and that has been made a huge impact on my life not support and you use funny like you would think something but just knowing you have a tribe or people who get it it's really worth it and now when i see the karen and i seem to recall you talk a little bit about some advocacy either interest or you had some experience where you were sharing well i had an advocate for my son and charge me a lot of money and they didn't pull hair when i made it there and then i seen other parents talking how does this person course i tell them i mean we don't really mention names if we don't  but then i had a wonderful advocate help me and she called him so i just got him out of this tract actually it was a long hard fight he brought me all the way up to me and i love her for it but i met her through special needs networking and  school and is one of our wonderful people on the page so i'm very my son's eyes are a lot during the last school year he had a really rough year he's actually very stressed right now in his new school and i'm very passionate about helping him i mean he's my baby right you know definitely the reason i mention that is that i just what i think of you i do think really advocating both of you but that was a little bit more specific in the school system which is not something i do they think now to get autism your help me navigate the schools and a piece of things and that's not the my bills are expertise but it feels i feel like it's more of yours which it's more you are passionate about it using your free comfortable space that we're going to get out of it you see a parent s starting to have all these emotions and what do i do and you've already been here that i want to help them out because i know at times i didn't have anybody i'm like that is you feel alone you don't know where it's here and i know i've been through this let me help you and just that small small bit of information that you get from one another can lead you down such such a path to get the things that you need for your child and the best resources a parent that's what i found so far in just posting so i have this and this is going on with school and they're telling me i can't do this that and another parent will come on and say no you can't and this is how you do it there's your resource right there because no one else is going to tell you  gain all right so i like to create social situations to teach my son taking turns a how to how to do things that kids his age would do but i also do it in the flexible way one of the things is a board game and i would eventually then surely like to sit down with the board and say this is what your friends are doing let's play it like this but just to jump in so that might not be might not be ready so i've created these board games that are fun and go with his motivations and are flexible and creative so i'm going to let you stephanie start with we're going to create the board but the board is different it's these pieces of paper that we're going to put on the floor however you want to do it i love when my son is available and able to to get him to help me because it shows he's taking a role but he's showing me his interest of where to put it right and it can change over time and the ones you put down  as an example i have this wave hello because my son isn't always talking so i would say how can you participate and maybe there was a time we were teaching gestures there was a wave wave hello can do that and on math skills count to three break it in two plus two is four whatever you want to do but this brings a little bit different higher element and you can make it age appropriate if that's what you're working on and just one more example we can come up with many different ones but there was a time when my son what i realized what it would open and which is good for your your hands right so i made a game with something like this where there was my son was interested in and i think that this insightful might take too long but that's ok thank you all right so now that we have the board the next thing you normally do is get a pawn or something that you move around and i like to just grab things around the house it doesn't so again being flexible it and it's fun to grab a spatula you can grab but we actually had an extra door knob so i got the door knob sometimes i use myself and this is really fun because then you get your child to move and i really we were there was a time william as you heard me say would sit in the corner and i was trying to get up listen to something together so rolling dice and then  and we would do it like really big and we were throw it really high let it roll and then take the steps and move ourselves around the game there's something you think that you could do so i engage my son and i think he'd love to throw it up in the air and just you'd love it said just getting engaged in any way is up is a lot of fun but i think sometimes a thanks for saying yes we do plan that like i have a lot of fun and i think it just shows you know taking your mind outside of the traditional board game being creative like civil and however it goes minute took just like a week to get this made because he didn't really want to do it but we just kept being persistent and having fun with it and then as we built to it we actually got to play the game and i know that they will is a great resource for you both are very proactive and dynamic and have created such an amazing space for parents just to be to get support and you know thank you