Hello everyone. My name is Tamara Wood. I am married to Jeremy Wood and we have two boys, Alex who is 6 and Hunter who is 2. I am going to tell you the story of our son Alex and our journey of finding out about his autism up to now. It may be a little long so bear with me, but a story isn’t just the beginning and the end and I really want to let you get a glimpse into our daily lives.
Jeremy and I found out that Alex would be gracing us with his presence in November of 2006 and we started making our mommy and daddy to be preparations, which of course includes reading “What to Expect When You’re Expecting”, getting all of the diapers and wipees, and all of those necessary huge items that fill up a tiny two bedroom apartment to the brim. And of course we prayed and asked God continually for a healthy baby. I would occasionally get scared that something would be wrong with Alex. That he would have heart problems, get the cord wrapped around his neck, be missing vital organs, etc…The normal fears of a mother to be. However, I actually had a very normal and easy pregnancy with no problems and Alex joined us on November 13, 2006 at 6 lbs. 4 oz. after a normal delivery. He was a healthy, perfect little baby boy. All five fingers, all five toes, everything was wonderful, except of course the difficulty with getting him to breastfeed and the even greater difficulty of getting him to sleep. He wanted to be in constant motion and when we would finally get him to be deep enough in sleep we would try to lay him down only to have him wake up and therefore we ended up having to sleep in whatever position we had gotten him to go to sleep in. But, this was our first child and I had heard other mothers talking of these difficulties as well so it must just be what some babies do.
Looking back now I can see things that we missed. Again, with Alex being our first child we didn’t see some of the red flags. He couldn’t latch on to breastfeed, he made very poor eye contact, he didn’t respond to our voices or touch, he lined up his toys, he was a very picky eater, his speech was delayed, he didn’t respond to his name, he didn’t seem to understand what we said, he had to have routines, he was a very poor sleeper, he didn’t want us to touch him, he needed constant motion, and he didn’t like going to places that were crowded and loud. I know…it should have been obvious right? For us it was just how Alex was. We weren’t connecting the dots. We just saw a little boy who liked to play by himself, knew what he wanted to do, and was very focused. If he had done all of this and totally, completely ignored us then we would have been more worried I think. But, he would tolerate us to a point and even admit to our presence when we had something he wanted or we were doing something he liked. However, we didn’t see that he wasn’t reacting to us; he was reacting to what he wanted. Now that we have Hunter I can see that there is a huge difference between interacting while playing and just using someone as a tool to get what you want.
I remember at his 1st birthday we invited all of the family over and even bought him his very own “make a mess cake”. Except that he didn’t want to come out of his bedroom with all of those people there and when sat in front of the cake and made to at least touch it, he screamed like he had been hurt! So of course we let him go play by himself. What alerted me wasn’t the fact that he had done this, as it was normal Alex behavior. What alerted me were the reactions of our family and friends of amusement, but also somewhat confused by the way he avoided them and wouldn’t react to their attempts at making him laugh. Again, now that we have Hunter I can see that you don’t actually have to work very hard to make a 2 year old laugh. I still get a kick out of just calling Hunter’s name (which is a joy to do in and of itself because he actually responds) just so that I can make a funny face at him and see how hard he laughs.
Alex’s first birthday party was when the first little seed of doubt crept into my mind. The next tip off was when my mom, who has been doing children’s education since before I was born, gently brought it up with me saying that Alex wasn’t meeting his milestones. I tried to ignore it for a while, but decided that maybe he just needed some social interaction with other children. After all, he was just at home with me all day while I worked. Since we couldn’t afford to pay for daycare and I didn’t know anyone with children, I decided to apply for a job at a nearby church to work in the childcare room for Alex’s age during church. This way Alex would get some social interaction and I would actually get a little money out of it…bonus! From the very first day I noticed what a HUGE gap there was between Alex and his peers. By this time Alex was about 1 year old, playing by himself in the corner holding a stuffed duck, lying on the ground next to it with one eye closed, watching while he moved the duck’s head up and down. Normal, cute Alex behavior. But, the rest of the kids were playing side by side. They were talking to each other!! I remember thinking that either every single one of these kids is a genius or something is going on with my little boy. The rest of the kids soon learned that you don’t need to bother to go and ask to play with Alex because he ignores you. And the other staff members with kids of their own were talking about what plans they had for the weekend or what their child had said or done. I felt like I had been punched in the gut. Every single thing that these little innocent kids were doing with so much ease and everything that these other parents were experiencing with their children…Alex didn’t do a single one of those things. After only about a month or so of working there, I quit. I just couldn’t take being surrounded by all of those talking, loving children who accepted me so easily, who came and jumped in my lap with a book to read to them over and over again, who cried when I left the room, who drew me pictures, and who told me they loved me. I couldn’t take it anymore. Not with my very own child not caring when I left him, not looking at me unless physically made to, not wanting to sit in my lap, not seeming to have the slightest idea who I actually was besides that person who fed him and clothed him. I had had no idea what I had been missing out on. Of course I still loved Alex with a mother’s passion, but all of his quirks and nuances were now blaringly exposing themselves to me as signs of something “off”.
We scheduled a check-up with his doctor. She told us that if he still wasn’t talking in a few months to bring him back. So a few months later, at 18 months old, we took him back to his doctor and after only a few minutes with him she gave us the number to ECI (Early Childhood Intervention) and the stepping stool diagnosis of PDD-NOS (Pervasive development disorder-Not Otherwise Specified). Oh ok…so he’s just delayed? He will catch up? We were actually relieved to have an actual diagnosis to go with our sudden escalation in worry even though we had no idea what it was. And unfortunately, this isn’t something that his doctor really explained to us and thus began my relationship with the internet and research. Even after researching what PDD was and getting a little more educated we still had no idea what a long road lay ahead of us. We started Alex in ECI with his therapies and our education. Once he was 3 he was immediately accepted into Early Head Start just days after his 3rd birthday. We decided that he would ride the bus to school every day so that he would have a set routine in the morning of riding on the bus. He loves riding around and we thought maybe this would help him to adjust. While he did love riding the bus, he did not love going to school. We were those parents that actually followed the bus to school on his first day to see how he did. We parked far away and zoomed in the camera to see him as they led him off of the comfort of the bus…and he was not happy. Every day when I went to pick him up I asked how his day was and every day he had trouble. It took him several months to get used to the rhythm of school and learn that there are certain things you can and cannot do. Once he got used to the routine and knew the exact boundaries we saw a significant change. Alex now loved school! All of those months of torture at seeing him cry and harm himself were paying off. He was transferred to Locust Head Start the following year and that is where we met the woman that would be his teacher until he was 5. That classroom really helped Alex to bloom. His teacher and his aides were all so wonderful and sensitive to his needs that he flourished even more. He had his very own daily schedule and followed it to a “T”. Also, several of the other kids in his classroom kind of adopted him. I would go and visit often to see him having so much fun at school. It was a balm to my nerves to see how well he was doing in such a great environment. And almost every time I went I was told by several of the little girls that Alex was their boyfriend. They would hold his hand and make him artwork. And even the boys befriended him. They looked out for him and offered to help the aide hold his hand during transitions to make sure that he wouldn’t try to run off. It melted my heart. And not only that, but Alex began to respond to them! First of all, he would actually allow them to hold his hand, he would allow the girls to pat his back and even hug him, and he even began to lean over and put his head in their laps during movie or circle time!
Of course he still had his off days, but somewhere along the way Jeremy and I had unknowingly been rejoicing in the progress and just trudging through the setbacks with God keeping his promise of never giving us more than we could handle…even if it didn’t feel like it at the time. Even though we knew there was a very high chance that some of the things he did would never happen again, he HAD done it and he COULD do it. And that was all that mattered. I don’t remember ever actually getting frustrated with his lack of progress or maybe I should say with his one step forward, two steps back progress. He would finally say words only to not ever say them again. He has progressed greatly since that time, but by Alex standards, not “normal” standards. It was only with our lack of communication with him and figuring out how to connect that I had the most frustration.
The constant guessing game and trial and error of trying to figure out if he was crying and upset because he was hungry, thirsty, tired, sick, in pain, having sensory overload, etc… was wearing on us.
Back when Alex was with ECI they had suggested making pictures for Alex to try to help him communicate. So I started by making Alex his own little menu of pictures for at the house that were attached to Velcro so that he could “pick” what he wanted to eat. He picked it up fairly quickly when I physically held his hand to pick a picture and then immediately would hand him that food. But, we had to do it for every single picture. He didn’t generalize well and still doesn’t to a point, but now when he sees pictures he can connect that they probably are linked to some item that he can “ask” for. Once he mastered that, I got a little photo album and put pictures of his favorite restaurants and put Velcro on the front so I could put out three choices for him. I would show it to him once we were in the car and would again physically hold his hand and have him pick a restaurant. This took a little longer for him to catch onto as he didn’t get the food right away; I think it was a couple of months. He had to wait until we got there and ordered. But, I just would take the picture with us inside and every few minutes I would show it to him and say the name of the restaurant several times. But, finally it clicked with him and we used that method until we got his communication device in June 2011 and I actually still have it as a back up just in case. His communication device is called a Vantage Lite and it has really been a God send, along with his teacher who helped us to get it. He started out with only five words on it and now has all of his foods and restaurants, drinks, toys, therapists, teachers, family, animals, shapes, body parts, and some emotions. Most of these are there to help to teach him what or who they are. He really only uses the food and drinks consistently, but every day he amazes me at his brilliance of having mastered this once unthinkable act of “asking” for what he wants.
Of course, even with this awesome new tool our days are still mainly composed of guessing what Alex wants or needs. Some days he is just content to sit in his room and lounge around with his mountain of blankets and watching TV and other days he is literally bouncing off of the walls, getting in the sink, climbing on the furniture, climbing on top of shelves and jumping off, trying to eat the “popcorn” off of the ceiling, harming himself and/or us, and screaming at the top of his lungs. And most of the time we have no idea what has changed or what set him off. He still doesn’t understand enough to tell us if he is in pain, angry, sad, mad, sick, etc… So sometimes my husband and I feel like we are walking on eggshells trying not to do anything that may set him off and yet at the same time push his limits so that he doesn’t get stuck in his little world. Since the introduction of Hunter there have been a lot more rough days since Hunter doesn’t remotely care about those eggshells…lol. And I guess he wants some payback after he wasn’t even 24 hours old and Alex gave him his first slap…as you can see in the picture below the grandmas faces were priceless. Alex was meeting Hunter for the first time and the first time Hunter let out a noise he didn’t like he started pinching himself and well…you can see. Lol I had just got the camera out and took a picture of his first time meeting Hunter and didn’t realize he was about to do that…just a coincidence that I caught it.
And of course Alex is somewhat OCD. He notices EVERY SINGLE DETAIL. For example, he notices if a food isn’t the same brand or doesn’t actually come from one of “his restaurants” even if it has been put into their bag. And not only do they have to come from a particular place, they also have to “look” right. For example, if we get McDonald’s french fries he will only eat the ones that are crunchy, short, and pointed on both ends. And he will only eat the top bun of the burger and there better not be any sauce on it…and you have to give it to him in sections. And this is just one example. He even has a specific route that he walks to go to the kitchen and if he is wanting you to get something and you go the shorter route he melts down.
Alex is now 6 years old and is still basically non-verbal, is considered what is called a wanderer (sprinter is more accurate) and doesn’t understand potential dangers. Along with the diagnosis of Classic Autism he has sensory processing disorder, two small chromosome deletions, and pica (eating non-edible items/objects such as wood, dirt, sheetrock, paper, etc…)
Non-verbal: He does make his babbling noises and he does say some words, but they are hard to understand and they aren’t communicative. He just says words that he has heard or seen repeatedly like the alphabet, numbers, colors, shapes, etc… He is like a little sponge soaking up all of this information. We know that he knows what all of these things are and will point at them and name them, but not if you ask him what they are. As far as we can tell, when we talk to Alex it’s like our words are all jumbled to him and he only grasps those words that he knows, but has no context to put them in with what we want.
Wandering: We have to have all of the doors leading outside in our home chained at all times and an alarm on the doors to alert us if they are opened just in case he pushes the chair over and undoes the lock. If he were to get out of the house he wouldn’t understand all of the possible dangers like vehicles, the elements, and strangers. When out and about we have to keep a hand on him at all times because he tries to run off.
SPD: His sensory processing disorder causes his body to “search” for stimulation and also to be over stimulated. He moves constantly all day and jumps and spins and flaps his hands because his body tells him that he needs to. He gets upset with very loud noises and won’t eat certain foods because it can literally be painful.
Pica: His pica has been interesting to say the least. Along with the alarms on the doors we also have an alarm on the cabinet containing all of our cleaning products along with a child safety lock and child safety locks for cabinets with breakables and sharp objects. And also child doorknob covers on any rooms he isn’t allowed in without supervision which is basically every room but his own.
I was asked a while back how having Alex had changed all of my perceptions of parenthood and I honestly had to answer that he hadn’t. I wasn’t one of those girls who fantasized about getting married and having kids. I mean I wanted to someday, but I was more of a “don’t make plans until you have prospects type of girls”…lol. My perception of parenthood has actually changed with having Hunter around. It’s like with Alex I went through parent boot camp with a whole different set of rules and have studied and studied on how to care for him and now with Hunter the study guide has changed! We are having to learn how to be parents all over again with Hunter and constantly asking family and friends “is that normal?” But, hey what is normal anyway? ;-) He is the complete opposite of Alex in his social interactions and the way that he behaves. But, they both have that fiery spirit and “can do” attitude that we love even if sometimes we wish they weren’t quite so “can do”. ;-) We love both of our boys very much and wouldn’t trade either one of them. I can’t imagine our lives any other way even with all of the stress, worry, and downright burnout that comes with it. Alex has come a very long way has really started coming out of his little world. He makes much more eye contact, occasionally responds to his name, is getting better with his talker, and enjoys playtime with the family.
In a study I came across, Marsha Mailick Seltzer, Ph.D. at the University of Wisconsin-Madison found mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers. (*see site below) So, I take that to mean that we are soldiers in a war that will last our children’s entire lives and we need to help our fellow soldiers out as much as possible. The parents and children affected by autism are not casualties of this war; they are just the chosen few who were drafted. So stick with us and let us all lean on each other and help out.
He will not let you be tested beyond what you can bear." 1 Corinthians 10:13.
I am currently on the board for Reach for a Difference trying to get all of the information on resources available here in Abilene, Tx so that families can have a place to go to find out what all is available in our area. Please feel free to share any and all resources that you come across.