Nancy Bernotaitis and Melissa Lemmon

00:03 Melissa lemon age 44 today's date May 12th 2010 in Dayton, Ohio, and I am a member of the Autism Society of America Dayton chapter along with Nancy.

00:18 I am Nancy Brenda Titus. I am 44 years old. Today's date is May 12th, 2010. We are in Dayton, Ohio and I am the President of the Autism Society Dayton chapter and friends with Melissa.

00:35 How was Stephen diagnosed Stephen was diagnosed actually when he was three was a little bit of a deceptive start. He had been ill starting about 18 months with just a lot of ear infection sinus infections, which isn't unusual but he didn't respond to antibiotics and after switching a couple of doctors. We finally got him into some surgeries and he had a series of them up until the age of 3 and ass he started regaining as hell. We noticed the the communication the talking was almost non-existent eye contact with non-existent. He had unusual hand movements and gestures would do unusual things with toys and I thought initially that was related while he

01:35 Hadn't heard normally and he and talk normally so that's just residual but he was at a daycare at a local University and they had some of the dean's from the education department come over and observe him and it was actually the first time someone mentioned autism and after going through the initial shock, you know, I started educating myself a lot and in it and was in denial for a while. I really felt in my heart that this is just residual but as he really became healthy and overcame a lot of things it wasn't clicking in knee and so that's how I discovered that did you feel like it was regressive like he had it feels and loss skills. He has skills and he lost gills again at the same time that he started getting sick. So I wasn't aware of any of the underlying sings in the doctors were were at that time. The surgeons were saying well,

02:35 She had so much diseased tissue heating you wouldn't expect him to but it was that transition into healthy wherever he had not been sick for a long time and his allergies were under control, but he wasn't the child. He was before and then again, I really wasn't aware of autism and it was a you know, the Educators that first brought that up and then we went to see many Doctor Who all had different opinions to but it was it was an odd.

03:13 Offers 5 years, you know and trying to realize what was what was going on. How about you? How was how was Sam? What's Sam was my third and he was born with his cord in the not so he was a blue baby and he wasn't picking up and him being my third. I knew something was wrong. So he was delayed all the way through he was slow to cross Lotus it up slow to walk. He didn't walk to him is 19 months old. He didn't Babble he didn't point. He didn't share attention. He didn't ask for things didn't mama dada any of that and but I explained it all the way, you know, like his sisters talked to his sister talking for him his brothers carrying them around, you know, and I had a whole list of things that he couldn't do and when the doctor would say, well we need to look at his development I would say but look at all the things he can do, you know, he can wave bye-bye and this and that but

04:13 No, I finally had to come to the realization that something was wrong. There was a delay and every time I would put something into the computer that he was doing it would always come back autism, you know, he was fascinated with fans and light switches and doors and he didn't play with toys. He played with household objects phone cord and things like that that were his toys. He didn't play with toys. That sounds so familiar with this toy. Stephen had he would crash Legos and try to stack cars he and he could make the most unusual objects spin, you know, and and you know, but he was playing like you said, we just called him quirky quirky kid. He's the cable guy. He loves chords rope cable help ya anything like that and he would wrap it around his arm and elbow, you know, like a professional he could real

05:13 Rapid quick. Absolutely. There's Talent there and you know Stephen was an only child in our case. So we had nothing to compare him to accept his Pierce except his peers and when he started he was at home with his grandmother, but we as we started exposing him into daycare centers and getting him exposed. It was so obvious and you know your gut tells you you know, initially, what did you do wrong that he's not, you know, it's something learning is its I've done something I missed something and not giving you enough attention. You know, when I first started reading, well. Isn't the only understanding I had and I think

06:07 Really most people is from the movie Rain Man rain yet and I'm like, no, she's not Dustin Hoffman, you know, he doesn't care about Walmart and or Kmart and he stack of cards. No, but you know when you understand when you start looking into it and knowing what spectrum mean and you look at some of the basic things you can start feeling that tendency and then you start saying okay with it. If this is what it is, what's the cure and that's where it's you know, no cure and no one definitive treatment or one definitive process and

06:57 You know suddenly, you know, you got a variety of doctors a variety of therapist.

07:03 Education getting involved before kindergarten and really no one saying here's our guide book right. Now. How many doctors did you have to see before? You got a diagnosis a real diagnosis? One, two, three, four fifth. It was the fifth doctor at they originally said add and put him on Ritalin and he had a really really bad situation reaction with that, you know, and I learned over time that you know, you can find doctors if you're not satisfied and that he's looking you can ask you can keep looking in that not all doctors Percy the process of working with parents and working with the other professions the same way, you know, I had to look to find a doctor who would take more than 10

08:03 Because Stephen wasn't a 10 minute decision child, you know, will Sam looks perfectly normal and he can really perform when he wants to and you know to get him into a situation where she has to stack cups and blocks and things he can perform when he needs to and trying to explain that. There's there's quirks here. There's something a Miss Stephanie was the opposite he when he knows when someone's observing or testing him and taking him through that it's we were at the University of Chicago many many years ago with a professional was doing the typical evaluations on abilities and Stephen was just fidgeting around and I remember the gentleman with the lab coat in the tides and after a few questions Stephen as fast as you can imagine went picked up that paper clumped it up and ran to another part of the room with her the cat.

09:03 And threw it behind and turned around and said something like carb itch more track and his father Stephen father never liked. You know, he knew you said that he just did not want to participate at that time. And you know, it's like I just remember the evaluator car looked and like what do we do with that? We never have had that house out of a box for that. No, no. Yes, and when it comes to out of the box that's been more than or more then then then not now when did Sam get his official diagnosis took a long time. He was officially diagnosed with creatine transporter deficiency when he was three two-and-a-half 3 years old and this was a doctor in Cincinnati who was doing a study on that and when he got to the point that Sam fit the criteria that three stop looking so we went a whole year.

10:03 With this diagnosis the strange odd thing. How do you treat this? And so we got no interventions, you know, nothing for that year cuz we didn't know what we were dealing with right until I just kept looking and kept looking and he finally got a diagnosis we could work with he's had several diagnosis. I mean everything from cerebral palsy to creatine transporter deficiency to in add and mental retardation. Finally got the diagnosis that I think he is is autistic and okay. I stopped I can work with this. Let's go with this one. We had the add we had obsessive-compulsive.

10:50 They were very strong in thinking that it was fragile X, but they ruled that out. I have a family history of epilepsy. So they thought is there some kind of pre epileptic something going on.

11:07 And it again for me, you know as a teacher now to it wasn't educator. It wasn't initially a doctor, but an educator who threw some, you know, lengthy of that observations that post that and that really made me think and again because no doctor really had

11:35 Brought it up, but it was taking the time and I think that yeah because the doctor sees your kid for maybe 3 minutes 5 minutes and they're not really even looking at my kids are looking at me and saying, okay. What is he here for? What's his symptoms? What do I need to write a prescription for and they just want to get you in and out as quick as I can and I see kids now I can identify. There's something a mess with this one. You know, there's there's something needs to be looked at their I see it. Right. I've been in situations now with with the teaching where there are kids that are older that aren't defined there on an IEP.

12:16 But something holds me that there is an underlying and because autism is a spectrum it's not

12:24 That they have to have every specific type of symptomatic sign but there are you know certain tendencies in certain areas and that can't have effective treatments. But you know, once we got into the medical end of it, we have the official diagnosis pervasive developmental that has no or not. Otherwise specified. Yeah, which is a living? And you know, it makes it all so very difficult when you're dealing with treatment options with insurance companies, which is a whole nother ball of wax. There. Are you have to really say we're treating gastrointestinal disorder here, not autism. We're treating sensory, you know immigration processing disorders hear words, and we're treating the actual problem not autism exactly we and that's how it is covered it because again these

13:24 Children have multiple issues and there is kind of a great relationship that you have to develop not just with the doctor but really his staff and his nurse and case managers to help kind of go through that because of the global misunderstanding about that and really when you get down to it who who are the true Experts of all of these are a really comes down to the parents. We we are case managers and

13:58 It in the whole family kind of centers around that too. I mean stefansson only child, but you you have three bright children how how are the other kids worked you over the years starting with Sam was little how have those sibling relationships evolved. They're very protective of their brother. My daughter has gotten into several fights over hearing someone on the bus say something about you know, that that special kid or not, even her brother, but she's very defensive of all special-needs individuals and staff is very protective. But he's more of a dude, you know, and he treats Sam like, you know, just another dude and fist-bumping, you know, all that kind of stuff and they don't go easy on him by any means, I mean they pick at him and they tease him and they he teases back there their siblings first and foremost, but they do

14:58 Take special, you know care of their brother protective and I think it's made them more sensitive to other people, you know, you had mentioned about being able to observe and just kind of have a sense of people having autism or something that could be on the Spectrum. I think the more that younger kids and in the schools are aware and become sensitive. It makes things easier when I was 5 years old. I had a problem with my feet and legs and I was put in braces similar to Forrest Gump, right? I caught my Forrest Gump days and the way my kindergarten class. My first grade class responded to me was very difficult. You know, I can still recall back there. But when I look at my son's experiences

15:56 And how the teachers and how the other students kind of integrate with him. His experiences were very different and I'm so pleased that it's come through that way now schools differ in districts and states and that type of thing but I think that pure relationship and pure understand can be so important. You know for the end says they my daughter can recognize her autism or Asperger's Syndrome said there's a boy that likes her at school, but she said Mom I think he's asked me is very fixated on certain things and and very sweet but she said I think he's I think he has Asperger's Syndrome undiagnosed. You know, he's just that cookie kid, but she says I really think that's what it is. She's very protective of him as well. I think we're going to have some unbelievable professionals when

16:56 They grow up go to school because they've had experiences then that will lend them into being experienced professionals make a lot of the the teacher today and and the doctors are therapists lot of them grow up and go into these areas, but without a lot of cans on hands on personal exactly and I know you can't learn this from a book when I went back to grad school to become a special ed teacher after so many years. I am very honest and my my best Professor is my son. There is nothing in any of the books that really gave me that practical understanding it makes sense. But when you really get into the one-on-one situations with the kids or you're going through the IEP process has or you're sitting down with a dog

17:56 Person therapist

17:59 You know your checklist really kind of fly out your mind. I know how did it. How did you come to accept the diagnosis? How did that?

18:13 The first thing that I did was fall to my knees and in the bedroom shut the door and I cried and I

18:23 Just felt the world ended.

18:27 There wasn't you know anything and being told about autism first thing as what can we do. How do we fix it? How do we hear it? And you you get fewer answers than you have questions and nothing definite. It was really through a. Of researching and a lot of difficult time where we found things that we could to understanding that the results of it still had a? But it could be progress and really it was living day-to-day in the activities in the actions in doing something and kind of not focusing so much on 5 years 10 years 20 years down the road because suddenly my dreams of what could my son could be as an adult and even from the moment they're born you have those dreams those dreams.

19:27 Went away and it took time to go through that grieving process that acceptance process to realize there could be other goals that maybe you know what I'm finding having typical kids and Sam is that my dreams for the typical cells don't always play out, you know, and there's that grieving process as well is that they're they're not going the direction that I put them in they've got their own ideas and their own choices to make and we celebrate the little triumphs was Sam as we go along, you know, something as simple as putting on his own shoes is a cause for great celebration and ice cream all around and you don't get that with your typical kids necessarily, but you do appreciate the small moments, you know, I look back now my son 17

20:25 And I realize that through him I've experienced an extended childhood and you know, I'm still riding roller coasters and I can still get excited over videogames the plane trails in the sky, you know, something like that. He just gets so excited. Look look, you know, it's the little things that you know,

20:51 Regard regardless of a disability, you know, my son is such a happy person and it's not but he does experience Stress and Anxiety and her but the thing is I so admire his ability.

21:11 To protect himself his mind or whatever when he is on overload. When his anxiety that he can shut it down. He now has an ability to come back out of it better than he did when he was younger. But you know, I kind of see things especially in the classrooms where I purchased from it and admiration that they know when they've hit a point that they they just can't take more. So what can we do to change things help and come back out and work with us a little bit but

21:49 I see such happiness in these kids and you know at times it makes me question.

21:59 Who's who's really handicapped here? Zactly? Yeah, I mean it makes you slow down and appreciate the puddles in the the flowers in the bugs and that you know, all the stuff that you get too busy to notice on a day-to-day basis. He mentioned bugs and any most people that know me know that I'm a Nut about ladybugs. I even have a ladybug tattoo on my ankle, but when after my son recover from his illnesses, but he was still shortly after the diagnosis of autism. I came home from work and my mother was was caring for my son and they were in the backyard on their hands and knees both of them.

22:39 Kind of an odd position to see him up the grandmother and and I said, what are you doing and my mom looked up and she goes to work we're looking for ladybugs.

22:51 And my son was down and just flipping the tops of the of the the grass blades and he looked up at me and said Lady by just kind of repeating and I remember that moment and it was kind of my my feeling inside that there's progress being you know, no one gave me a check. Lessa said the moment they say ladybug, but to me it gave hope I realized that progress is being made and maybe it's not the same progress on the level that you get from the schools for Fort Carson that type of thing that really matters anymore. We're on our own timetable it exactly and I talked to a mom the other day with a young son that's going through that, you know if he can get all of them.

23:51 These abilities by the age of so and so then he can catch up to this and I said, you know, I understand and it is so hard to let that go but really they're in charge of when their abilities kind of open that next door to the next level of progress and you had to keep on that progress as best you can but don't don't

24:18 Avoid enjoying where they are right now. Actually, that's the important part is to celebrate who they are and what they can do instead of what they mean a focusing on what they can't do. Yeah, I mean that list is very long how it is, but I mean, you know

24:39 Getting up and getting their own teddy bear. Do you know it when Sam was able to do two steps go get your blanket and bring it to me. That was Major. You know, he did two things checking out everybody. Look it. It just amazes the first time Stephen made the mix for a cake, you know and trying to step in through reading the ingredients. Do you know and you know before he would try to lick the batter out of the bowl, you know, what got to put that, you know, watching him and and during the process and he was older but when he was see me come he's no

25:21 Mom I'm doing it myself, you know where he wanted that you know, okay. He was 16 at the time. No, he's not driving a car, you know. No he didn't go to prom.. I've got a whole nother idea about that. But you know my cash though, he's cooking. He's making something on his out and he wants to do it on his own. He's a he's got that awareness that's progress now. Yeah, a lot of kids do that 10 years earlier for 7 years earlier doesn't matter, you know and in my house, that's great. Because now the next step is he's making his own head exactly. I run into a lot of parents with younger kids who feel like they're racing Against Time and the window is closing and I know they've been told there's a window of opportunity and I keep saying it never closes. No, it doesn't

26:21 I know that from the science of it where they talk about, you know, we know early intervention is the key it is the key but it's not the only your 38 you're still learning exactly. Right? I mean when you look at people who just you know, without any disabilities learning new skills and changing jobs and that type of thing. Why do we think that our kids are excluded from that? They still grow they still learn new skills and you know that that Panic that parents feel and I understand it because you too, you know, it still creeps happening at time but that Panic can cause anxiety that anxiety can cause pressure in children with autism are extremely sensitive, you know, they've got feelers out there that we don't even recognize and they know that anxiety and things I

27:21 I need for these kids. Is it a good thing in terms of helping them to feel comfortable to going on and

27:32 The thing is it's it's the comparing two to their peers and that desire but you know.

27:42 I have had doctors who have been honest and said I don't know why he's progressing the way he is whatever you're doing is working, you know and parents units building that confidence in themselves to know that my child will progress at the pace that my child's ready to progress and that the the brain is an absolutely unbelievable tool and there have been grabbing teenagers who have been in traumatic accident that lost part of their brain but recovered their abilities, so, you know kind of let let go of that pressure a little bit on yourself and it's so much easier to say than to do our kids are a little older and we know they're still learning. They're still growing. They're still there going to make it, you know, no matter what their final outcome is.

28:42 You know we continue to learn and so will they absolutely I mean I

28:49 I remind Stefan of that everyday, I mean when he went through his. Of not wanting to do work at home, you know, he would do work at school into at home. I would sit beside him with my books and I said, I'm your mom. I'm older but I have my work that I have to do at home and he started you no understanding that. It's not a punishment to kind of do that work and how can we make it fun? And to be honest? A lot of the things we do with our kids are things that to be honest. We should use with everybody right? You know, you know, I have to say that Sam probably is better at doing laundry than his two older teenagers siblings, you know, because I just assumed they would figure it out on their own but I've taught Sam step by step how to do it the same way with a lot of things around the house that we've taken the time to show Sam how to do it step-by-step and I haven't done that with the older kids. They're going to have to ask ask

29:49 And for some help there, I think and his name is Art, you know, my son is very detail-oriented, you know you when you have three steps you follow the three steps if you skip a step you start over again. I mean, it's part of his on his Quirk but on activities on board games on things where you do have to have Step 1 Step 2 Step 3. He keeps me honest. He he is my living GPS it absolutely amazes me Mom. This is not the this isn't the library worry about that burger or where we need to go there remember everything and you know, so I'm you know, I'm quick always on top of telling him. I'm proud of him, you know, and sometimes will turn it has been proud of you too much like I come across parents that feel like they want to know exactly what therapy to do.

30:49 What intervention is going to work for their kid? What what to do, you know just like we wanted a step-by-step Fix-It program. So today and I tell them well, what are your kids deficiencies? What's prioritized? You know, what's number one?

31:06 Tackle that first and then go to the next thing what's your next priority? So it don't try to do it all at once. I've heard that big but if we do it all at once then maybe this can happen fast, but you don't know then we'll work some what does it because and not every process works for every student in the child in the same order but it is ass looking at because of her a lot of these kids there at there's some medical issues that might be going on. There's behavioral issues that are going on. You know, what what seems sensory Sanskrit what seems to be the things that right now really are there barriers exactly and you can't the other thing is you can't go out alone, you know, you do need support support and whether it's family friends volunteers and it is hard to open up and ask for help.

32:06 It's costly in many cases. But the thing is it's one of those things where it does take a village because parents burnout, you know, and they're working. We can't there's too much to this. We can't figure it all out on her own but that's where friends come in. You know that have either been there or they've tried that. You know, how did hippotherapy work for you and your kid? You know, how did you find that doctor? How was that speech therapist and you can't do it on your own you have to have a support system and absolutely do and again, you know, our kids will progress a different time and different resources. I mean, my son is 17 and I still have my moments where I go back and I think

32:54 If I if I cut out or what or should I could things be different? But you know I have to I stopped myself because when I look at my son today, you know the way he is is the way he is and he is wonderful, but he continues to grow but it is putting priorities together, you know ahead of the staff. You have to prioritize what you're going to address an address it and then go to the next thing and the next thing until you know, you feel like okay. I see some progress and keep track of the progress that's very important to because you were so close. You can't see it. But other people come up to me to take, you know, he's just doing so much better and I'm like really I don't see that he's talking so much more and he's a settle for us because we live it every day and then to another program

33:54 My something different cuz they just they're like everyone weird after while things get kind of bored and there's not one-size-fits-all. Oh no. No, I mean it's not just a ba or the highway. I mean, there's so much more out there. Where is RDI? There's floor time. There's there's so many different things to try that there is you know, and when when one Program help someone they become such proponents that you know, some people try to say don't do anything else to only this guy but we can't do that because again every child has differences what's available to the family where they live all the medical it's different for each person here. We almost went bankrupt doing a ba and he wasn't even responding to it. Exactly. We went through our program.

34:54 We used the son-rise program the Option Institute and back then we paid $7,000 for one week of intensive therapy and built the room in her house. Now that worked for us, but we also had family and friends and people who could volunteer but still we we didn't do anything else. We had two incomes two insurances. Not everybody can do that end is 13 years later. The laws are different. Everything is so different. But you you know that I always try to find something and each program that seems to work but just as your family is unique your approach to it can be unique. Yeah, but talking to people finding out what worked for them and investigating it for your child is important, you know talking to not just the doctor's but everyone that that child comes in contact with

35:54 And there's something to pull out from from that and don't feel like you're a failure if this approach didn't work move on try something different your child as a unique individual with unique needs and you know, it's not going to be one-size-fits-all the cafeteria plan works for us, you know it exactly does and you know, it has it as a parent, you know, they're getting back also to the Greek situation. There is there are app and times in my life went when I did feel like a failure when in my situation the impact of my marriage and divorce and doing what was best for my son and you know, what's not what's best for me and trying to figure that out getting through that.

36:47 That feeling of guilt and regret I had to do that. I had to have work on myself to realize that my son is so much more than this and that and that so many people are involved in his life and in his progress and I had to get rid of that load of guilt and regret to keep moving forward cuz you know, you can't keep climbing that that hill with all that baggage on you and you know, we're all going to have moments like that. But when you really stop and you look at those pictures from 10 years ago all that's the best thing to do is look at those pass picture and remember how things were and then remember the progress that they've made don't you feel as I do that after all the sudden done. This has been a great gift.

37:45 I

37:46 I absolutely do that. He has he has shown me how to be the person. I was meant to be to changing my career and everything. I

38:01 I really feel sorry for people at times when I see them yelling at their kids or I see them pushing their kids to eat to perform to a level that maybe they're not ready yet because I have a relationship with my son. That is so close and so deep and he's autistic, but

38:20 I am absolutely saying that's my biggest treasure in life. It's been such a gift. You know, I had to typical kids and I thought okay. This is it. This is perfect life is perfect. And then I was throwing a curveball and I had to change what my values were who I was as a person and I've met the most incredible people out on this journey. I have my car bought out of the gate but I always wanted to have four kids. I always thought I'd have four kids and you did kind of My Life by the mini sizes stop. Yeah, but biologically, I've only had one but now through what stuff is taught me. I have a classroom. I'll have classrooms of my kids.

39:07 And the pride that I feel with them and the ability to see their potential more than what they don't. Do, you know is something that okay. That's what I want. I want this for all of the kids and if they're not biologically my own they're my kids in my classroom or or however it will be but yeah, it's it's I would do it again with no question whatsoever while the same hadn't had autism. I never would have met you at exactly and I'll tell you I'm happier. Now then I think I've ever been in terms of what I do and what my what my priorities are finding joy in the little things out even in the ladybug.