hello and welcome to navigate autism with jane lynn i'm your host jane lynch britain today we're going to do something a little different i really wanted to give you kind of a behind the scenes look at what goes on in our life raising a child with autism some of you probably have had a glimpse the many of you haven't and there's a reason for that because we don't want you to know as a parent there's so much that we have to deal with and as a parent of a child with autism is a lot more that we deal with and the reason we don't want you to know is because we really just want you to think that we're strong because we are and we also have a hard time asking for help so we do a most of it by ourselves being the strong people that we are but i'm going to share something with you as well the real reason we don't tell you is we don't want your judgment and it's not that you're doing anything wrong it's just that you don't understand because you're not living our life and you don't understand you may not understand the the level of pain or fear that we're going through and if we were to tell you some of our experiences you may be shocked and what we want you to know is we love our children our children are amazing human beings full of love they bring blessings to our life and that's what we focus on and that is what gets us through the hard times but today i'm honored to have one of the strongest women's and moms that i know heidi rome joining me and she's agreed to share with you a little bit about her journey with her eleven year old son e and she's going to tell you in her words some of the things that ethan has done at times she's called him violent many of the fair piece that she's tried and some of the tough decisions that she's made as a mother tougher than that i think i could have made myself but through all of that there's a message of hope and you're going to hear what she's doing now from the lessons that she's learned and how she's using that to help other moms like herself so i'm really pleased to welcome heidi rome thank you for joining me today thank you jane lynn for having me it's an honor to be here and thank you and i know that many of you viewers may remember heidi from a few weeks ago we had she was kind enough to join us earlier when we had the bucks county medium dorothy welch and dorothy gave us some messages of love the support from the other side generally speaking for autism but this this officially for heidi because heidi has been struggling with some of these tough decisions and so we were so excited that you came and loved hearing your story we wanted to learn more so thank you for coming back  thank you for having me so i wanted to first if you don't mind to start off by looking at a picture of your family so that our viewers can kind of get a feel for who you are as we talk about your journey it why don't you tell us the names of your family sure well that's my husband steve there there i am and that's my older son eric and this is ethan ethan is in blue ethan is ethan is a wonderful brave resilient young man with autism one there is so how do you what has it been like for you raising ethan raising a child with autism and what kind of impact has that ha demand rather not to he was diagnosed with autism at eighteen months i saw a very early signs that things were not quite right for example he was silent he was a silent baby he would rarely language he had none of that very little contact so we saw that early on things were things were off and sure enough as he grew the first signs were really physical delays and we brought in early intervention because he wasn't sitting up at nine months and so we started out with physical therapy and then moved on to everything else through early intervention and  i said earlier we don't usually share this effort mation because yes it's hard to because we know it out that does not define our children right and we don't know that other people might have the things view but what are some of those difficult behaviors that you that you thought well early on the most obvious difficult one was head banging he would he started banging his head very young and i mean against wells against floors countertops and he would look for edges so he'd be in the kitchen a look an edge on the counter boom like as he was passing boom boom any angle door knobs so i'm one hand it was gary and upsetting and on the other you're thinking he's going to hurt himself he's really going to hurt himself and that continued you know to present day which i'll talk about but that particular behavior and out the door and where is he and has anyone seen ethan and you know out the front door into traffic down the block right now thank god the neighbor caught him that was when he was about six so there have always been these difficult behaviors and the the family the impact on the family has been you know pretty severe because as you say you know there's worry about judgment and certainly in the beginning there's panic fear bewilderment shame you know did i do this my responsible for this happening i'm the big one i'm a terrible mother i don't know what to do i have no idea how to handle this i can't control it so i think that's really you talk myself judgment and that's one of the reasons we don't want to share because we're judging ourselves so much already already and i think that other people are judging our lives and not really feeling the blessings for sure if we're going to talk about shortly to go absolutely and and you know and everyone has a story about something happening in public you know someone's reaction when he steals a french fry off someone's plate you know and they are like oh i'm so sorry i'll buy you know french fries and some people are wonderful about it and others not so nice it varies on the reaction when older woman ethan pushed her mug away i guess that he felt it was too close to her and she had a fit because you know he touched it and there's a very disturbed child sitting there and you know the people at the other table were very kind and came over to me don't worry me time i was a basket case so you know life is filled with these anecdotes of even doing something in public especially and you know my sense of helplessness in the face of it i was sure obviously it had a big effect on you and your husband and congratulations you're still together because god yes the divorce rate is through the roof but what kind of impact on your son so your older son and his name is eric eric right so what kind of impact has a had on eric because he's seeing his brother still a french fry from someone or running out into the street or banging his had and and of course your attention rightfully so  run to make sure everything's ok and even took a right to what have you seen happen with eric eric it was a severe impact on eric eric on one hand is the most loving amazing big brother adores  is very kind and loving and playful with him but part of the flip of that is that when ethan would not respond would not play would play and then in a nanosecond turn and hit  erik would be very upset by this and basically why can't i have a regular brother i can play with erik began to isolate very young and never invited a friend over to the house because ethan might stick them or act up and even if i said i'll take ethan you know into another room or whatever it's a small house so what there wasn't a lot we could write to but he just didn't want to risk it and he had an incident happen eric when he was in kindergarten a little boy came over to play and something happened with the kids and eric said something to him you know that's not very nice and i don't think i want to be friends with you anymore and the other kid said to eric oh you better be my friend if if you're not my friend i'm going to tell everybody about your weird brother so using that as a threat right  so that's through eric into a tizzy and really no one came to the house for years after that and that is such a struggle far the siblings and i actually did a show on that recently because it is something that a lot of that they have to carry forward lot of emotional yes baggage they're strong and they get through it but it helps us appreciate them more hearing those stories so let's go back a minute you talked about you tried a lot of interventions you know ethan is doing the things like banging his head against corners and things and loping what are some of the interventions that you actually tried well actually i wouldn't sound because there were so many i thought i'm going to forget them and indeed as i you know to the last minute oh yeah we did this so i'll the absolute opposite effect that they were supposed to have one was supposed to reduce the headbanging it tripled the headbanging so we quickly learned this is not the way to go for him supplements such as n a c we did yoga for the special gut i've been to faith healers master john douglas john of god who was at omega from brazil prayer circles channels mediums intuitive healers other energy workers of course always my own prayers multiple times a day and night for ethan's healing and we at this moment you know we held off on certain approaches that we have considered the sunrise program for example which i know you're very familiar with which is the hyperbaric chambers going abroad for stem cell transplantation even though we do have even stem was something that someone had suggested in the face of very severe behaviors and i wasn't going to say but in the spirit of full disclosure of what how difficult life has been and the tough decisions someone had actually suggested that when ethan was in attack mode and lunging and gal jing and in a full fledged meltdown to consider using a cattle prod and with what they knew correct correct the thing time for us if i can now not something that you would want to maybe you did consider just to have the understanding of what it might do but you you know that you love your child you're going to it's going to help well you know i  did consider it because i was so desperate and i i had to say ok never mind the knee jerk or is this something that would benefit him would it stop the head banging would it stop the violence to give a shock that you know all the literature was saying is not too terrible and of course i would touch it first to make sure of that but the person who said to me well you know you teach you know kids with autism the way you would train a dog and you might want to train a dog using a device like this and maybe it would stop the behavior that you need so desperately to stop  chose not to do this and that was because i was my gut and heart said no talk about that but i've learned to trust that and also to think through i didn't want to teach e that it was ok for anyone to teach to treat him that way and at the original strict a b a program that he had been at there was an episode where they did do  done because we talked about that yeah right and this is behind the scenes what are some of the more severe things he's done in terms of his behavior well if you were to look at his room the walls are shattered because the from the head banging so this is not a to just make sure that he was ok we had a situation at school where ethan was in the midst of a meltdown and the teacher said to me afterward the young woman assistant said i shouldn't have gone near him i should have known better she got too close when he was in the midst of this and he ended up somehow thrusting her into a wall that she had to go to urgent care to check did she have a concussion  said there's a there are some severe things and you're things and it drove you to actually making a really tough decision which was sending him to a boarding school in boston obviously you tried everything else and it wasn't an easy decision to make and you checked it out and you felt this is the right thing to do and i know you've told me that the struggle you went through but i was there's one moment in that conversation we had that struck me as the main thing which is before he left he communicated to you a message and would you mind reading that right now so this was before he was leaving and we his prior school had many wonderful that they would try and they had facilitated communication at the school ok which is a sister typing so this is the conversation that we had through that it was so in the room were the teacher lisa me so i mean i hear this line i was so not expecting anything like this so my reaction did he tell you that god tell you that when i lived in heaven he told me that do you remember that time when i lived with god i wasn't named ethan yet what was your name i was not to remember it i had many before do you remember anything from the time at that point ethan said verbal e a script no thank you but he typed we should talk about it when nobody is here should this young man leave gave his name yes for even to say the word yes is full of intention his whole body has to work to speak right so the the aid left so we think continued to type his response to the question of what did he remember from the time that he lived with god i remember a life with no body when you go to heaven there are no bodies just spectacular energy did you choose to come here as ethan rome yes i picked to be me i have many challenges did you pick us as your family we were family another time we didn't live here we lived in a small group got hurt by warriors why did you choose to come back with challenges i will be greatly rewarded in eternity is there anything we should do to help you i have to complete my journey as prescribed by god does it feel longer than you thought it would be yes the journey is unfathomably longer than i expected what should we do to help you on your journey you just have to love me and that is your job the rest is my job to do i'm sorry for you don yes that is amazing and thank you for many ways because he wrote this to you before he knew he was going to this new school and you had shared with me that you and your husband were still struggling is a right thing to do so now he communicates all of this information to you much more than you ever thought he knew or believed or lived and is as a message i'm having chills right now but this is a message saying i'm doing my journey and i meant to go hear your mom thanks for loving me right and yes yes and this is the piece that one of the pieces that i think is so important that we share with our viewers because this is what you don't see and don't understand it only the families do and so we know our life is challenging but there are so many beautiful gems and blessed things that come with each day that help a forget that strength so i thought it be fun to look at some of the pictures sure of now i think these are pictures of you with your son a the school in boston so we could go out yes this is his bed in his room that he shares with four other kids three other kids the other four kids in the room yeah so that's his chest of drawers there is bed his bedding and you'll see behind him or the photo montage is that we develop to have up there for him as a reminder of all men all the people who love him this is during a visit i love and let's see what we have next now this the reason i chose this one you sent me many which the author beautiful is you talked about how your son and his his fifth and things he couldn't control ended you're saying abide him or getting close to the time where he's leaving or maybe you're just welcoming him and you can tell us what you're what you're doing but that's ok i'm going to narrate because you've done so much talking and this is very emotional stuff no it's ok you know actually  wasn't going to send you this one could certainly they're not but most flattering one of me but i wanted to for you just see there's the yummy snuggle bunny yes i there he is right there for me hug me and  e still you know this is the kid who had already typed what you just heard and is aspect is of a little child you know the sweetness the innocence the pure love and pleasure of you know roughhousing with mom and mom hug and wanting to be held tight i love it yeah i love it larry is that we have a few more than look at it and if it was at the school the grounds of the school  know about the puppy would even feel that he had been at least right by a dog a cute dog but i felt i want to be authentic with ethan i don't want to hide anything like this sure  going to leave be a good boy we love you and you know there's the autism because you know how many times has this happened where even i'm trying to engage with him and you use that in ways to not only help yourself and your family but now you're using it to help other moms the police take just a minute and tell us what what you're doing what is your new business and how are you helping these mothers well that my new business is mom spectrum oasis and i decided to become the person who i had wished i had had when i entered this journey this autism journey i wanted to be the every every overwhelm mom with us will be assigned a clarity companion to be that one on one guide on the journey keep you grounded remove you from isolation and be a sounding board and be able to really partner with you to say we got this we're going to figure it out you have to take the long term perspective i know right now you think you have to do it all today and figure it all out and make a decision now and to just keep someone calm and clear and give them the support they need to sort through lots of information lots of decisions and put a game plan together well it sounds like you really hold their hand yes through the process and you obviously have a lot of experience and are a wonderful person to hold their hand and to give them hope and from talking to you know you do a lot of coaching with them which which is invaluable to these parents so how can they reach you if another effect so they can find out all that information about you guys you know the name on there yes her well heidi thank you i wish we had more time there's so much more i want to ask you but it's been just wonderful having you here and thank you for sharing and for allowing yourself to be vulnerable in front of all of our viewers and hopefully helping other parents as well as other people who aren't connected with autism just learn a little bit more about what it is what we go through and how wonderful our children are  thank you thank you so much and anyone who contacts me i'd be happy to send them tips for overwhelm mom kids have been recently diagnosed with autism but from my perspective right i know this message of hope mixed with the practicality for that i thank you so much and thank you for watching i hope you are able to take something away and really understand a little bit more about autism today thank you so much i look forward to seeing you next time on navigate