Mother with Autistic Son has Peace of Mind
I visited with Tamara Wood and her husband, Jeremy, a few weeks ago.
We discussed what life was like having a son with Autism. They also wanted to share a tool that has been very helpful to them in keeping their son safe.
Alex is now a 13 year old middle school student. He was diagnosed at about 18 months or so with PDD, Pervasive Development Disorder. After a few more evaluations they diagnosed him with autism.
I asked Tamara what was Alex involved in. She said, “He still loves to watch videos like baby videos, alphabets, and colors and shapes – those are the things he is into. All the kids…you know….Blues Clues, stuff like that. He is still kinda into that. But I think going into middle school has been good for him. He is in Special Olympics now. He has been doing some bowling, and he got 3rd place.”
I wanted to know what were the greatest concerns that Tamara and Jeremy had concerning Alex. Tamara said, “Besides, obviously the danger that he could get into like running off and vehicles, knives, sharp objects, things that he will eat because it looks cool. Obviously, also as he gets older, we worry about how he’s going to adapt to the world around him when we are not around. Making sure he is taken care of once he is older and making sure his brother doesn’t have to have the burden of that on him. Let him have his own life. Those are some things that we have to start thinking about and as he turns 18, we have to think about guardianship and changing things of that nature since he is not going to be intellectually able to make his own decisions. So, you worry about people taking advantage, that is the overall fear.”
Alex has a limited vocabulary Tamara said, “He has some words, but overall not conversationally verbal. He knows his colors, his alphabet, so I mean he has some words but..”
Jeremy, interjected, “He can’t tell you about his day.” Tamara said, he can answer simple questions that we’ve taught him repeatedly like…Do you want a drink? And he will just say “drink”.”
I asked Tamara if there was anything she would like to say to the public concerning children with autism.
Tamara said, “They are hearing things… just because you don’t think they are listening, they most definitely are and they probably know what is going on. And to not limit them…push them a little..give them more room to grow because otherwise they stay stagnant and they are like everybody else, they need to grow. They determine how much they grow, but it is still growth, it could be small steps or big steps, but that’s it basically.”
I wanted to know how she kept a positive attitude and got through those tough days. She had a simple answer, “Well, God is a big part of our lives and each other. There’s a lot of tag teaming that goes on. Just like “If I’ve had a day, I can just go into the room and shut the door and be by myself”. There is quite a bit of that, that goes on.”
I asked Tamara What kind of support system they had?
Tamara said, “We have a lot of family in town, we have both of our parents that live here, so that is nice. They don’t get a lot of chances to keep him, but they definitely are willing and they love him to pieces. Up until recently his insurance covered us having an aide that would come and help us out with him during the week, but we lost that insurance so we don’t do that anymore, but it is mainly family.”
I asked the Woods if they had started making plans for Alex after he turns 18.
Tamara said, “He has been on a waiting list since he was 3 or 4 for services that ………. It’s a long waiting list, like thousands upon thousands….hopefully he will get it before he becomes an adult….that provide either in-home care or out-of-home care, so we are basically hoping for that until then I guess he’s just gonna have to live with us for as long as he can and we will just do our best and work as much as we can like we have been doing.”
I asked Tamara to tell me about the GPS tracking system that she is using.
Tamara said, “we have been using it for as long as I have been working for the company. He wears it every single day. I can show you on my phone if you want, but it tracks him everywhere he goes, it tells the speed of the vehicle he is in. You can call him, they have it to where some kids can, he doesn’t do it because he doesn’t understand it, but you can press a button to tell your parent to call you, like an SOS. It has so many features, it’ hard to go thru them all, then they have wearing accessories for those sensory issues we were talking about. It’s nice just to be able to see him every step of the way.”
I said “See him every step of the way”?
Tamara said, “Yes, on your phone, on an app, you can track where he is, so if he did run off you could figure out where he is quickly because he is not verbal he is not able to tell someone, “I live here, this is my name” and stuff like that. So, it is nice, because he runs away at school a lot, they have told me several times he’s run out of the classroom. Thankfully, we haven’t needed to search for him with the app. because they have gotten to him quickly. You know, if he were to get away from school and run off like all these kids that have been drowning and stuff, which is scary.”
I asked, “What is the name of this company that produces this product?”
Tamara said, “AngelSense. Like this is his day today, it shows how many steps he took, the speed of the bus, you can see the whole transit that he took to school. Each one you click on it and it will show you the speed it was going and while he is at school and you can makes it big or small or however you need to make it so that it will tell you and then I can get notifications if he didn’t get to school on time. It sends me a notification when he leaves school, when he gets home, there’s notifications when he gets to leave somewhere. Like I said, you can call it, you can make it update every 10 seconds, so if he had run off. It can show your own location to where he is so you can find him easier. You can alert the police, share the location, all kinds of stuff.”
I said, “So it’s in this particular case, you are using it to keep up with your son who has autism, but it seems that this would be useful for several other situations.”
Tamara said, “Oh, yeah. Autism, Downs Syndrome, Dementia, any of those. Or even group homes. AngelSense has a couple of group homes where the group home bought the product and put it on all of their residents.”
I asked her, “So having his device, what has it done for you?”
Tamara said, “Peace of mind….well, like we said, he can’t tell us about his day, so I mean that is not his day, but I mean it is a lot better than knowing nothing, so there’s that. I know exactly…like when he goes on field trips and stuff, so I know when he left, when he got back but then also just knowing where he is and that he is ok. I mean, I can’t follow him around all day…so having a way to look at my phone and check on him is nice.”
I told her, “I know that all parents have dreams or something that they want their children to do or to be and so I guess Alex, how would you measure success or what are your hopes down the road?”
Tamara said, “Honestly, as long he is happy, I don’t care what he does. I mean there are several things I can picture him doing, like he loves to bake, so I can definitely picture him with the right structure, at the right place, I think he could do some baking or something. As long as it makes him happy, then that’s what matters.”
I asked them, “Is there anything that you would want to say about Autism, about Alex in particular, just anything else out there that maybe you think the public ought to know?”
Jeremy said, “We freak out the neighbors, “if you ever see this kid running down the street, grab him”. (laughter) “It’s OK, you can put your hands on him. Stop him!” (laughter)
Tamara said, “Hum, I don’t know. I guess if you ever see us in public and he is screaming or having a meltdown, we understand that you want to stare or whatever, but I would say, cut him some slack. Or if you have any questions come ask, we don’t mind talking about it.”
I said, “In other words it’s probably not the time to say “if that was my kid…….”
Tamara said, “Exactly! Yes.”
Jeremy said, “We’ve heard that comment, ‘You all should spank him!’ That would just make things worse, you have no idea.”
Tamara said, “The sensory issue above everything else, yeah, that would just not help.”
I asked her, “Where could a person get one of these GPS systems?” Tamara said, “They have a site, www.angelsense.com and you can just go on there and it will give all kinds of information and all the features, I think there is a sale right now. You can just go on there and order one and it’s a month to month service.”