hello and welcome to navigate autism with jane lynch and i'm your host jane lim britain and today i'm really excited to introduce you to a special guest my father ashley britton she is going to talk with me about siblings because you know as a parent and or a caregiver of a child with autism the role of a sibling is so important because their role models they also inspire our children to play or try new things is also challenging for our children who don't have autism because they have needs and sometimes they are their own special needs so how do we balance both and i'm really excited that ashley accepted my invitation to join me today because we wanted to share with you some of the things that we've learned and i'm going to be honest with you this is not one of those shows that's all roses and sunshine and rainbows because we're not perfect and we don't want to make it appear that way though it's actually a little bit vulnerable for a little bit challenging but our commitment and i desire to share what we've learned is much stronger and so we're really excited to be here to talk about some of the things that we've done in the past some of the things i've done in the past that we would like to do differently or would have done differently as well as some things that we a some ideas or suggestions for how things could be done differently or for going forward so i'm really excited that you're here with us and ashley thank you for joining me well thank you for inviting me it's a pleasure to be here thank you so much you're such a big part of our life and have been such a part of this experience with william and first i'd like to just explain a little bit to our viewers a little bit about that experience so ashley is two years older than my son as she has been with living through autism for thirteen and a half years and starting off early on she and her brother had a really strong relationship they would run and play together william would run after her and start to try to imitate her really young he was potty training he was he was talking he was really doing everything ashley did and then autism came into his life and into our lives and things got a little bit more challenging but we were running to doctors and therapists and meetings and trying to navigate health to ations and then know what to do so we took auschwitz along in the car with this and all the appointments there were times we did hyperbaric oxygen treatments as me ashley and william got into that chamber there was a real family experience and as they grew their needs became different and we got a little bit more separated than i would have liked i we also homeschooled william or about eight years and the whole focus of the family became on william and how we could help him grow and thrive and in the same time we were doing the same thing for ashley but it was her needs were different she was in a different school with different friends and trying to support her and so we like i said earlier kind of drifted apart a little bit from a family unit but now we're starting to bring that back together and we have some  that we're going to share with you later on how we're doing that but now that i've kind of explained ashley and i say this because so i've said here when i you know earlier we're just to be honest with you and talk about our true feelings  observations and and let it go from there so i actually would i would love it if you in your words if you would explain what you were relationship is like now with your brother where you kind of already took a lot of what was thinking actually so like everything i was going to say you kind of already described it i guess now in comparison to how it was in the very beginning well actually in the very beginning i don't recollect and you know i remember even like as i've been growing up you would kind of tell me these memories were like oh you and william would sing together you would see he would sing you a song right before he would go to bed and for me that was kind of hard because i was so young and i cannot remember that so i feel like to think that we had that kind of relationship where it was something close to a typical sister brother relationship and i can remember that i was suffering very hard for me growing up especially with the fact that i had so many friends who had that brother and sister relationship and the fact that i couldn't have that typical one and it was just kind of that like really distinct reminder every single day like you don't have a normal relationship with your brother that was hard and like you said once you guys started homeschooling there was kind of like a separation with the schedules and what he needed what i needed and i feel like that was definitely hard and that did push strain and our relationship because there was so much that he needed to do that was on the schedule and then there is so if that i had to do like you said i mean time because i was going to a different school and as i grew up i benchley went off to boarding school so that owsa kind of took time away from me being at home where i would only maybe come home once a month and only be there for maybe two or three days and then during my when or in spring breaks i would have plans without playing with my friends so the out so kind of separated us apart so as of today i think we are still like we have a strong relationship i love him and i know that inside he loves me even though he can't communicate that to me but as far as like a strong like relationship as to how much time we spend with each other it isn't as strong as i wish it would be and hopefully as time goes on that can improve even though i am about to go off to college so that will definitely be a lot harder especially it will be a lot  similar to boarding school but i do think it could be a bit stronger and that is because of how things were when we were kids kind of like how you were saying like where he had to go to therapy and all of these different activities and i had other outside activities like i had soccer school events and that just like you can't really do anything about that right and you know i know it was hard growing up because all of your friends who are girls just happen to have brothers the same age as william exactly like looking in the mirror they're like this is what i could have had and i you know when you were a baby or you know a toddler you really wanted to sibling like so badly you want them to play with you in to kind of grow with you and be there for you and and you felt well how did you feel when william we found that diagnose and you felt like the brother that you kind of thought you were having really wasn't at all will again when i when he was first diagnosed i was four so i really don't remember that much i really the earliest memory i can really think of is i when i started to actually have memories i can think of i just remember having a brother with autism i don't really have a lot of memory of before the diagnosis so i kind of was thrown into this with oh you have a brother with autism and i was kind of my new normal and then when i went out into public and saw that they were brothers and sisters who could actually like talk to each other and communicate with each other do all these like amazing things that was kind of like that was like a curveball for me in a way and i like i even remember like i would have i would see like my friends with they're so billings and they would always be like saying things like ah like my brother is so annoying and he's doing all of this like you know that's the typical brother sister relationship so if i remember as a kid that kind of hurt me in a way because at the end of the day they have a sibling who they can talk to and relate to even though they might not be like happy with each other that moment like they should be lucky and just grateful that they have that person there were as i didn't really have that opportunity and yeah growing up it was just kind of that's what it was and so i kind of had to adjust to that but then also while i was growing up there was this feeling that i kind of actually felt from you and dad where there was you know that feeling of embarrassment or awkwardness so whenever we would go to public i would kind of have that feeling in me and it would i feel it fell so kind of  strange and our relationship and what it could have been and that if we as a family could have gone out into public without feeling this embarrassment or without feeling this shame of having a family member who has a disability i feel like i would have been better with making it feel awkward and i would've helped like strengthen our relationship in a way and that was actually one of my deepest regrets and something that i have learned over these years to kind of embrace a you know what really is no normal family there really is nothing that's normal and i wish that i could have accepted that and just continued on and focusing on my brother instead of will what is normal to society you know you raise a good point and you know that it would be the law we were doing the best we could we always do the best we can at every moment but what i realize now more than ever is the effect of our beliefs on our children because i didn't come out and tell you i was embarrassed to have a child with autism where it's hard going out in public or what someone going to say we're going to interrupt their outing and what's the judgement and and but i was feeling it and  are you felt it was very obvious and only did you feel it but you embrace it in a way or or to get in in such a way that it affected your relationship with your brother and so that's you know something that i i've learned and had i known i would have tried to do something differently i mean i think the beautiful thing about the homeschool program and spending more time with him is help me accept it more and change those beliefs lot later in life though than i wish it had come for you but i appreciate you want to tell you though i i really appreciate your honesty and it's always helped me even when i didn't want to hear it it help me find my way in the true north because sometimes we try to ignore it based on our feelings and our own judgments but i did want to ask you kind of talked a little bit about this but i think it's interesting and you have such great perception and in looking back so when you do look back what is or is there anything that you would change either that you did or that we did as a family that we would do differently if we had that opportunity well actually i was recently thinking about this because we you and i we went down to ocean isle beach north carolina to visit some family members and actually we were visiting family members i don't think i've ever met before but i while we were there i kind of got this like feeling as we were just talking and meeting everyone for the first time in that like there was just this feeling of love and acceptance and there off the entire church i probably like could just by the end of the tremendously know by heart what you were going to say to every single question because everyone kept asking about your business and all of the things that you were talking about recommending that all of your products and like i said by the end of the trip i probably knew it by heart he was just talking about so much and with everything that you were saying everyone was just giving you such positive feedback and even with when they would ask about william or anything that was related to william or autism everyone was just showing you that kindness not acceptance and there was no judgment there was no feeling about awkwardness and i realized you know that when we were younger we had kind of seclude ourselves from the rest of our family and that kind of put also put a strain on my relationship with my cousins and my other family on that side and i realized this week when we were talking with your brother my uncle and we were just talking about our lives like just day things and he was saying something and i was thinking to myself like well i've never known this and i've probably seen maybe ten times in my entire life and even that just kind of says like you know wow they got some a lot because even though they've we are kind of far distance wise new jersey in north carolina there weren't that many opportunities because there were times when you it does fell as if we had brought the whole family together there would be that feeling of awkwardness or that feeling of judgment because we would be bringing william along we bring along all of those different things that he needed which would you felt kind of would put a strain to other people but i when we went down to north carolina this week i realized that that's not the case that all of our family is really here to support us they're here to help us through this journey and they're having our backs through it know what like no matter one hundred percent and in the end if your family is not doing that than i think that's when you should question like well are they the family members that i should go to for help or for guidance and because if they're going to be judging you at the end of the day for someone in your family or something that deep personal for you then why should i like expose myself but really i was actually surprised and amazed i mean not really surprised because i know that everyone in our family are like amazing people and not everyone has amazing and lucky opportunity to say that but it was truly amazing just to see like how accepting they were of everything that we've been through and how in a heartbeat they would be willing to help us with anything and i feel like had we known that years ago that that could have been something that we could change and that's something that definitely parents now can understand and like help with their kids i think that's a really good point because that is something that when i talk to other parents of children with autism we all seem to have similar fears and concerns and we feel that distance with other family members because often they just don't understand and then our challenge is how do we help them understand and i think for myself i just closed myself now is that those are excuses and thankfully as you know for the past ten years i've really learned that it's worth the effort and to stop assuming what people are thinking that because usually actually i more often than not people want to help they just don't know what to say because they're afraid to say the wrong thing exactly and that's why with your explanations and when they ask you those questions that's what helps them feel more comfortable and that's what wants them to like go out there and help which really i find amazing is that people now or how they've wanting to learn more and help is like ten years ago when it was more of a new topic and people are kind of like what is that so yeah well that's actually i  thanking you for that observation because i didn't even make that connection this weekend or this past week but it makes sense is that when you talk talk openly and honestly and with confidence about something people want to listen but that confidence and openness comes from being ok exactly i'm ok talking about it i accept it but that's interesting thank you for sharing that we think so i know that you and you've shared a lot about the past and some of your feelings and what we could have done differently and definitely not letting our judgments get in a way hold us back from doing things as a family number one and bringing you into that full wood with william  what have you done i know what you've done i want our viewers what you've done to kind of bridge that gap and to make those stronger connections with your brother well actually i have a few examples i there's a new one in particular i just want to throw one short one out there for that when you and dad started the homeschooling program you guys actually offered me a kind of this like side job to kind of be like a creative i guess just assistant and cope with games activities to help that boy him you thought would like and as like a nun in ten nine or ten year old and just wanting to help and being like there i helped through guy created activities and put together just games that i personally thought he would like and i would offer that to the team members at the time and kind of show them how to do it and i think a few of them actually did and they said it worked pretty well and enough for a little bit until i went to middle school and i became busier with things but the one that i think you were hitting on age and similar thing i put together these games and activities that i thought would be fit for a camp as well as something that would be and would like and i put together a schedule of all of these different activities as well as like times for lunch time for a snack and kind of like a break and when i was putting the schedule together i kind of expected to have like you know a distinct schedule like a very strict schedule like ok this hammer to do this at this time we're going to do this i wasn't really expecting william to come just not anyone so kind of like follow that schedule but i think being able to have that patience and allow that continued continuity of the schedule and just l flow as it is that kind of really helps as well as showing that to the other counselors who i worked with some of the psychic so uses well some of my friends who helped out like we just kind of all but everything flowed together we were helping the kids you know kind of say and help what like we're kind of trying to make this for william and just help him through everything so if there's a moment where he need we need things to be quiet we would kind of quiet them down to just help william ease through it but really taking the time out of a few weeks of the summer and putting together this camp really allowed william to connect with other kids his age as well as be a part of a camp kind of environment which is something that's very common for kids his age and because this this experience taught me a lot actually was the topic of my college essay which i submitted to all the schools and really why out why i was even writing  it like that even taught me more about my own like self and what i learned from not how even though you might be making this and it might nuff flow the way you want things to go it was giving him that kind of tough experience a he never had because i could tell from his feedback and how he was smiling actually interacting with all the kids and he was having so much fun laughing like yeah we get might have not have followed like my original schedule but it still worked and he loved it so that was what i wanted in yeah you know actually just to give a few more details you you had three friends from school that you knew you were the leader and this is the first year this is the first hard it is great and you did have a schedule so i mean there was a lot of organization behind it which gave you the foundation to allow you to be flexible which was great because you had a lot of planning you bought a lot of things or use things from around the house to create water activities or target practice or jumping activities or some like a field day you have a camp experience and water so it would be really interesting i think really helpful to for viewers if you could tell to some of the activities that you did in case they wanted to do their own summer camp i mean you kind of touch base and let me just take my word out of my mouth oh my gosh we really are  twins yeah like target practice we did a water balloon taught us we did oh i remember the second year we did a slip inside which was a huge hit because all you really is just a water so even you can use a tarp and so then the kids will love it because it's anything like that it's just fun for a kid around that age for let's see what else we did one game i remember where we took this kind of like parachute and we had a rubber chicken and  it was literally we just threw in the middle we were just like be flopping and the kids were just they thought it was the funniest thing of the rubber chicken flying in the air and like of course like me my friends were just like ok you know what is ok this is going to cost it's just a rubber chicken flowing in the air but for the kids it was something so funny and honestly you can be so creative like just find something around the house that is obviously safe for these kids to play with and you could just be creative and come up with your own thing like just  hula hoop and tack it to a tree and maybe get like a ball being kind of bad bowler something you just throw into the who make it like a target practice and it's something as simple as that as long as it's like the feeling i guess some kind of time out of your day that you think the kids will enjoy it even if your child with autism doesn't necessarily like find as fun maybe have another activity back like in the like in the back of your head like just lined up like maybe suggest the siblings that are watching what is that that you would just to them were one thing that i personally would suggest is to be patient as hard as it is because i remember i'm first of all not patient person so it was very hard but just know that with what your parents are doing it is a very hard task and know that they are chyme their hardest to kind of make everyone happy and just to have that patients and know that even though your needs might not be met one hundred percent at that time that they somehow will be for something else in the end that your parents still love you and you are loved and you are just as important and also i guess just like kind of how we were touching up in the end like be hopeful be interactive and kind of come up with your own ways to like just help out like how i helped out with the program you did for williams homeschooling and as well as the summer camp and then also a side advice for the parents i guess is to kind of i know i kind of have to throw it out there but  find that time of the week where you can kind of take time out of your weekly schedule and just go out with the family and have time for everyone so everyone feels included and there really is no separation schedules because i think that time the other really solidifies the relationship and the strength within the and just the love and support and everything like that and to really like to do that does take a lot of courage and i know that it is hard  but to go to go public and everything but at the end of the day you know it really does not matter someone else's opinion of you outside of the house and just like just really in that moment family is what matters and that we will really show t sibling like especially to include them into that like family bonding moment so i think that is important once i could this said it better myself thank you wonderful feedback and thank you so much for sharing and coming from  r i really appreciate you for having me you're welcome and i'm really excited because next time we're going to talk with actually meet william's best friend and we're going to talk about how to create friendships and some of the things that we've done to help william perry who actually has more best friends some the activities we've done and you're may even got a chance to meet william stay tuned and until then be well and look forward to seeing you