When Aisling was two years old, she started going to speech therapy.

I wasn’t sure what to expect, at first. The only word she used appropriately with any consistency was the word “no.” She’d been evaluated, and she had severe speech delays for her age. Even though she would babble happily for hours, her babble was non-functional, and it was difficult to get her to pay attention to anything to help get her on track. This was all complicated by the fact that she never really seemed to really *want* anything — at least nothing that demanded direct one-on-one social interaction from everyone. In many respects, the other people in her life seemed to be props and tools to help her manipulate objects and obtain out-of-reach things. As soon as I realized she had a severe speech delay, I tried working with her day-in and day-out — and while there was the occasional “fluke” where she would seem to say an entire sentence accurately and correctly, language still wasn’t a functional medium for Aisling until she started the Speech Therapy program at East Tennessee State University.

Speech therapy took place in these small, brightly-colored rooms full of toys and see-through one-way mirrors where parents were supposed to go to observe the therapy in progress. For some reason, however, I spent very little time in these observation rooms. Usually, I was out in the therapy room with my daughter, assisting however I could, learning their tips and tricks to try out and reinforce in our own home. In hindsight, that must have been a very difficult thing for them to do, to allow a parent to be so involved in the therapy process of her own child. All the same, I learned valuable information each week by practicing hands-on in a clinical setting with my daughter, and I’m grateful I had the opportunity to do so.

One of the first thing the speech therapists did was to teach her simple sign language in order to demonstrate the functionality of language. In truth, we actually only had to teach her one sign — the sign for “more.” Using hand-over-hand guidance, we’d hold out an object she’d want, but we wouldn’t give it to her until she would bring her pinched fingers together in the “more” signal. It was easy for us to demonstrate by forcing her fingers together that she would get what she wanted if she would simply “ask” for it. It only took a few sessions before she’d completely mastered the more signal. Her therapist then added the word “more” into the mix and encouraged Aisling to actually speak the word. This took much longer, and Aisling would still frantically sign “more” while she spoke it for a long time after she mastered the word. Aisling’s therapist then applied the basic “more” principle to other, more specific words, and over the course of several, several months Aisling made incredible progress and developed her vocabulary an incredible degree.

One of the things Aisling enjoyed most about speech therapy was the Giant Tub of Dry Rice and Beans that she would often crawl completely into and basically cover herself up with. Her speech therapist explained the sensory issues Aisling was probably dealing with, and recognized that this tub was providing much-needed stimulation in this area. Initially, we used her attraction to the Dry Rice and Beans to our advantage — to get her to sign or say “more” to be allowed to climb into the tub, for example. Eventually, we had to wean her off the tub, because as she progressed, we had to get her to focus on other toys and aspects of play. Still, I’ve often wondered if part of the reason she made so much progress initially was simply because she had a sensory component to her therapy early-on.

Another valuable resource that I received from the Speech Therapy program at East Tennessee State University was their parent workshops. In particular, I participated in the Hanen Program’s It Takes Two to Talk. This particular workshop was such a valuable resource, because it focused so much on communication being more than just words. Aisling’s nonverbal communication skills were also rather underdeveloped, so not only did the program help me show Aisling other communication methods she might use, but it also helped develop some of those nonverbal forms of communication. The most important takeaway from the program, however, was this idea of loving and accepting your child as they were, and finding more nontraditional ways of developing and exploring social bonds with a child who never initiated them. This simple program did so much to help shape my perspective of my interactions with my daughter. Instead of struggling to meet an end goal or the next benchmark, working with Aisling became more of a consciously creative playtime, where the goal was simply Aisling and I making a connection and communicating on some level. I became much more concerned with process and the journey than the actual goal, and I was able to spend time simply *enjoying* Aisling while helping develop all different sorts of avenues towards communication.

I remember a very sobering moment I experienced in the middle of the Hanen workshop. One of the presenters at the workshop had very good suggestions and seemed to be a fountain of information. I went up to talk to her after one of our sessions, and in our discussion I found out that she had been unable to have children of her own. I was completely dumbfounded and humbled. It had been a hard road with Aisling, for sure, but I had never stopped to think about what it may have been like to have never been able to have her. I realized that no matter how hard things were, I was extremely fortunate, and I needed to count my blessings every day.

The speech therapy program at East Tennessee State University was simply amazing. Not only did the therapy sessions themselves seem to help Aisling tremendously, but they also equipped me with the tricks and tools I needed to continue working on her speech development at home. Within a year, Aisling was speaking in simple sentences, and using a good percentage of her language in a functional manner. I am forever grateful of the guidance we found there, and the tremendous effect it had on Aisling’s early development.

I wanted to thank everyone for their encouraging comments and posts to my latest entry. It always helps to know that I'm not alone in this, and to hear some reassurance from others who have their own history of experience to pull from. I imagine all parents need validation at certain points in their life, and I'm grateful I have such a strong resource to pull from in the readers of this blog. I appreciate always your comments and feedback.

As difficult as last week was, this week has been a thousand times easier. While Aisling is still suffering from allergies (the most recently developed symptom being a violent, hacking cough) she seems to be feeling better overall, which I think has improved her mood. I've encouraged her to slightly alter her sleeping habits: she'd started wanting me to wake her up at 4:30 AM each morning so that she would have a long period of time to play on the computer before going to school, which meant she was going to bed at 7:30 PM each evening. This week, in order for us to spend more time together as a family, I've coached her into changing her bedtime to 8:30 PM each night with the understanding that I would be waking her up at 5:30 AM each morning. This way, she still has *some* time to play her favorite games and watch Pokemon cartoons on YouTube before heading to school, but she's not completely overdosing on passive forms of entertainment at the very beginning of each day. She's started attending a new day care center in the afternoons after school, and while the usual struggles and difficulties have already begun (kids making fun of her, Aisling being unable to make new friends, etc.) she seems to be much more comfortable with the place than with her previous after-school arrangement, which is good news. She's managed to get her homework done each day either at school or at the day care center, so we haven't had to struggle as much with that (we'll see if that holds true tonight, since she has a Social Studies test tomorrow that I don't think she's quite prepared for.) I also think that our work with the Feelings Book is helping her develop better coping mechanisms, in addition to giving me a clear vocabulary I can pull from to offer suggestions for her in times of stress and aggravation. Overall, she's been a much more pleasant child this week, with a much better and brighter attitude -- which, of course, comforts me a great deal.

One of the things she's started doing every night at bedtime that just warms my heart is demanding "cuddle time." Basically, "cuddle time" consists of Aisling, me, and Thomas all piling her bed in a big Hug Sandwich and just staying there, hugging and holding for a few minutes. Usually, our cat, Pantoufle, wants in on the action, and will climb over the top of us and nuzzle our faces. It's such a tangible, physical example of love, support, nurturing, and family, that I know my own heart just fills with warmth and love whenever it happens, and I hope that Aisling's does, too. I forget sometimes, because Aisling has made *so* much progress in verbal communication in her lifetime, how important physical communication has always been for her, especially ever since her experience with the Wilbarger Brushing Protocol helped make her more tolerant to touching and hugs. I still have a lot to share about this, actually -- about her first experiences with speech therapy, about the Hanen Program, about the amazing progress she made after sensory integration therapy with her occupational therapist. Aisling's future-step-grandmother mentioned to me this week how incredible it was that Aisling had made so much progress in her lifetime, that it was difficult to believe she was ever non-verbal and completely withdrawn. I definitely want to go back to those topics and explore them, soon -- again, partially because Aisling *is* such a success story when it comes to the intervention and services she received.

But, today, I just wanted to take a few moments to remind myself that, for every bad day, there's a good day; for every moment of pain and frustration, there's a moment of beauty and love. Yesterday, as we were driving home from the day care center, Aisling saw our house come into view. "There's our house!" she exclaimed. "Yes," I agreed, "there's our very, very tiny house." (Our home is only 900 square feet in size -- when I made the purchase, I pretty much assumed it would just be Aisling and I for the rest of our lives. Just goes to show I shouldn't assume!) "Yes," Aisling agreed that the house is small, "but at least we can fit inside!"

And it's those moments of delightful, simplistic wisdom that make every meltdown worth it. At least we can fit inside, indeed.

It’s often difficult to write about the bad days.

This past week has been one struggle after the other. Aisling has been honestly feeling extremely under-the-weather due in large part to sinus drainage and allergies, but I finally discovered on Wednesday morning that she had been using her illness as an excuse to get out of going to class and to avoid school. She had a full-fledged emotional meltdown on Wednesday morning, after which I felt completely drained, rather hopeless, and like I must be the worst mother in the world since my child was so completely and utterly unhappy. I also felt as if I had not helped her develop healthy coping mechanisms for dealing with her issues. The rest of the week has been peppered with intense power struggles and angry outbursts, Aisling huffing and puffing when she doesn’t get her way or when she misunderstands something I said, storming off into her room and slamming the door, practically growling at me when I come in to check on her. My darling fiance, Thomas, in an attempt to help me see the bright side of things, pointed out that I would have plenty of topics to write about and explore from this week. While this is true, these are hard things to discuss. It’s embarrassing for me to admit that I’m absolutely clueless when it comes to certain topics, that many days I feel like I’m stumbling through the dark when it comes to parenting. I’m ashamed to admit that, even after all this time, I can still be really very afraid when it comes to all of this.

Part of the issue is that I don’t have much in the way of a barometer for measuring how “normal” emotional outbursts and self-deprecating attitudes are for ten-year-old girls. I was a very odd kid, myself — well-behaved and even-tempered to an almost frightening degree, most of the time. I had a little brother,  but he didn’t begin his emotional outbursts until much later in puberty. Logically, I might deduce the combination of hormonal changes that I’m sure Aisling must be going through along with the complications of autism as related to self-awareness, emotional relationships, and social interactions are what lead to her outbursts. However, I don’t *know* this for a fact. I’m not around a lot of ten-year-old girls, typically-developing or otherwise. This is why I’m so terrified that Aisling’s reactions may be extremely out-of-the-ordinary and may signal that she has deep psychological issues that I need to address in addition to the autism. Mostly, however, I’m just at a loss at how exactly to help her through these bad spots, to help comfort her and reassure her that everything will be okay. There is probably nothing worse than watching your child suffer and simply not knowing what you might be able to do to help.

On Wednesday morning, Aisling was still complaining about feeling bad. I was encouraging her to go to school, anyway, since she was obviously just suffering from allergies and she wasn’t running a fever. In the process of our conversation, Aisling confessed that she was afraid the kids at school would make fun of her for being sick, and basically said that she just didn’t want to go to school. She cried, she yelled, she talked about how ugly she was, how stupid she felt — I think she even used the phrase “I’m a fatty,” which really concerned me. She has such a low self-image, and no matter how long I argue with her and assure her that she’s beautiful, intelligent, wonderful, and loved, she just doesn’t seem to believe me. We’re reading The Feelings Book: The Care & Keeping of Your Emotions right now, and I have even tried referring to what’s in the book — how she needs to replace her negative thoughts about herself with positive ones, for example. Nothing seems to work — she still remains convinced she is ugly, stupid, and unlovable. She won’t hear any alternate views on the matter.

I’d assumed from things she’d said about the kids at school and her general attitude about herself in general that she did not have a good relationship with her peers. According to her teacher, however, her peers actually care about her a great deal — almost too much at times. When Aisling starts having a “meltdown” in class, they flock around her to make sure she’s okay. They try to calm her down and help her out however they can. If you ask Aisling about her peers at school, however, she’ll tell you that they don’t like her and that they pick on her all the time. I’m assuming Aisling often misinterprets what her peers tell her — for example, if someone doesn’t share her specialized, narrow interests, she often assumes that they must not like *her* either. When she was still obsessed with black holes, for example, she would complain that her school didn’t teach anything about black holes, and then she would make the assumption that no one at school liked black holes, and therefore no one at school liked her, either. It’s very possible that the kids are doing their best to be nice to her, but she gets the impression that they don’t like her because they don’t want to talk about rattlesnakes all the time and don’t particularly care about Pokemon. At the heart of things, it’s a communication problem — and I worry that this problem is strongly hurting her self-esteem, and I feel at a loss on how to try to help her through it.

I am planning to take Aisling to see a psychologist for her emotional issues at the beginning of the year. I’m hoping I might be able to get some useful feedback and perhaps some answers at that point. In the meantime, I know I can only do the best with what I have, and I just have to keep trying to help Aisling see how wonderful she is and how much she is loved. Still, weeks like this are hard to get through. My own self-confidence falters, my patience is tested, and I often simply don’t know what to do. It’s easier, now, that I have so much help day-in and day-out from my fiance — a luxury I never really had before — and Thomas is often much more patient than me and much better at knowing the “right things” to say to help Aisling feel better or at least to help her understand whatever situation we’re trying to deal with. All the same, weeks like this are still difficult — for all of us.

Early Monday morning, Aisling’s school nurse called me to let me know she was complaining that her ears were hurting really badly. I tied up a few loose ends at work, made a doctor’s appointment for later in the day, and rushed to the school to pick her up. She was sleeping soundly on the cot in the clinic, which was my first clue that she actually was feeling just as bad as she claimed.

A little backstory — Aisling is notorious for making mountains out of molehills when it comes to her illnesses in order to try to get sent home early and avoid being at school. There was a time about a year ago where it got so bad I simply had to stop coming to get her. Unless she was running a fever or throwing up, I had the nurses send her back to the classroom. In this particular instance, however, she’d been complaining about her ears off and on over the weekend, so I knew there must be some truth to it, and I figured she might have an ear infection.

When Aisling is honestly feeling bad, it’s always obvious, because she immediately loses her usual sassy bravado and adopts a very sweet, soft-spoken demeanor. “Thank you so much for coming to pick me up,” she told me as we walked out to the car. She also said that her ears were “bruised,” and tried to come up with broad generalizations about her illness to logically explain why she should be allowed to do certain things: “Just because my ears are bruised doesn’t mean I can’t read a book,” she’d say, for example, when she wanted to know if it was okay for her to read in bed after we got home. My favorite was, “Just because my ears are bruised doesn’t mean I have to be nice.” I responded, “Just because your ears are hurting doesn’t mean you have to be grouchy, you mean?” “Yeah,” she said, and continued to work on her homework.

As we sat in the waiting room of the doctor’s office, I realized that not only was she much more calm and subdued than usual, but also that her autistic traits were much more pronounced when she wasn’t feeling well. I had already noticed that she was staring off into space more often and had a much longer “lag time” in her responses, as if it was taking longer for her brain to process the information her senses were collecting. In the waiting room, she pushed one of those bead-and-wire toys around and around in a circle as she walked around the children’s table over and over again. I don’t generally see her spinning or walking in circles too often anymore, so I immediately took notice of this activity. That being said, she did a great job of explaining to the nurses and doctor that her ear was hurting, which one was hurting, how long it had been hurting, etc. “I got water in my ear In the bathtub, and now I have an ear infection,” she told the nurse. Both the nurse and the doctor attempted to make jokes with Aisling, gently picking on her because she was so convinced of her self-diagnosis, but Aisling would have none of it, screwing up her face and giving them an aggravated look which is what usually happens when Aisling suspects she’s being made fun of. I gently and quickly explained that she was autistic, that communication was an issue and that she didn’t really understand jokes. They looked in her ears, said that she didn’t have an ear infection but that she had a lot of fluid behind her ears, and that she must be suffering badly from allergies. They sent in her medication prescriptions and we went home to have lunch and wait for them to be filled.

Again, Aisling continued with her soft-spoken and super-sweet demeanor, asking gently for a snack of Goldfish crackers after lunch, being extremely patient in the store, with taking her medicine, and then with the large amount of homework she had to work on. She even kept a very positive attitude when working on her math homework — something that *never* happens — until I pointed out that she did half the problems wrong. As another aside, it breaks my heart how much she struggles with math. Sometimes, it seems as if she gets the basic concepts, but she has such a problem with the application of those concepts in a consistent manner. She doesn’t pay much attention to detail, and her answer is often wrong by one digit, or a decimal place, or a missing zero at the end. We work on math almost daily, and she’s getting special help through the resource department at her school, but math homework is probably the number one major cause of meltdowns in our household anymore. It’s especially difficult when Aisling tackles her homework with the positive attitude she had yesterday and still has trouble getting everything right.

Aisling also becomes much more cuddly and affectionate when she’s sick. As I sat on the couch, watching Gilmore Girls on DVD and drifting off to sleep, Aisling would curl up with me, give me hugs or kisses, and ask me if I needed anything. She wanted to snuggle, to be held and comforted. It’s almost as if illness makes her more emotionally available, helps break down some of the usual barriers of communication. It’s heartbreaking and sweet all at the same time.

I did let Aisling play a little computer and a few minutes of video games, but I also got her in bed early where she was promptly knocked out by her allergy medication. She still wasn’t 100% today — and, in fact, she complained so much about feeling terrible that the school sent her home early. All the same, she’s on the road to recovery, and in the meantime I can contemplate her actions, delight in her mannerisms, and try to determine whether or not she’s feeling well enough to shamble back to school tomorrow, or whether she’s just trying to get out of going to gym class.

Several of the companies in Knoxville sponsor a Halloween-themed event each year called Boo at the Zoo, where kids can go trick-or-treating along a "treat trail" set up along the zoo's main routes. There are many other activities available as well, including dancing, party games, and various characters you can have your pictures made with. My former boss now runs one of the companies who was sponsoring the event, so I managed to get free tickets for my little family and we headed off early Saturday evening to wander about the Knoxville Zoo in search of delicious treats and fun times.

Aisling has decided to dress up like Princess Rosalina from the video game Super Mario Galaxy this Halloween. Rosalina is more than a simple princess, however -- she's in charge of taking care of the cosmos, and she's a very wise and thoughtful character. As far as the costume itself is concerned, we basically just found a regular princess costume at our local department store -- but in Aisling's imagination, she's obviously embodying an almost goddess-like creature. It was amusing to watch her "correct" people around us who asked if she was being a princess or if she was being Cinderella. "I'm Rosalina, protector of the Cosmos!" she'd say in a very sharp, almost annoyed manner, and the parents would smile politely while the kids that asked the question basically ignored her after this point -- I'm assuming because I doubt they knew who in the world she was talking about.

I should probably make an aside here and confess that I've not made it particularly easy for Aisling to adopt mainstream social interests that would help her better integrate with her own age group. For years, we only owned vintage video game consoles -- Nintendo, Super Nintendo, and a GameCube. As such, Aisling became very well-acquainted with extremely old and outdated video games (the original Mario series, old Final Fantasy games, etc.) which gave her tons of "geek cred" with my friends, who remembered playing these games when they were kids themselves, but this pretty much isolated her from peers her own age who were playing wii and xbox games. Now, partially thanks to my workplace and partially thanks to my fiance, Thomas, she's playing video games on modern game consoles -- but she still maintains a great affinity with those old games, and and she'll watch the walk-throughs on YouTube. In addition, most of the people in her age group that are as obsessed with video games as she is are boys, and most of them are of the age where they are becoming extremely interested in the "violent video games" that Aisling doesn't enjoy. Each year at Halloween, Aisling wants to dress up like an obscure video game character. This makes it very difficult for anyone to "get" what she's dressing up as when she goes trick-or-treating.

One of the things that amused me about Aisling's Rosalina costume was her facial expressions whenever we took a picture of her. She would always close her eyes and tilt her head upwards whenever she would pose for a photo, as if she were trying to be extremely regal. When I asked her about this after the fact, she told me that she was just trying to look "wise like Rosalina." She did not, however, explain to me why someone needed to close their eyes in order to be wise.

 
At Boo at the Zoo, Thomas and I ran into a couple we know on Twitter. They're a couple that really helped me understand how useful Twitter could be as a social networking tool about a year and a half ago. I'd started following them because they were parents of a high-functioning autistic / Asperger's Syndrome child who was a teenager preparing for college. Reading their blog and their tweets gave me a lot of hope for Aisling's future, and also helped me to feel a little less alone in my hometown of Knoxville, Tennessee. It was good to read about other parents dealing with similar struggles and celebrating similar victories who were working with the same school system and resources that I was. It was really great to finally meet this couple in person.

All in all, we had a really great time. Aisling, as usual, was really only interested in the trick-or-treat trail. She gets freaked out by loud noises, doesn't always understand humor and jokes, and also has a strong fear of many general Halloween items, such as ghosts and skeletons -- so she really didn't want to participate in any of the other games or activities. Still, I think she enjoyed dressing up in costume, looking at things, and really being Rosalina for a couple of hours out of the day. And Thomas and I, for our part, enjoyed spending time with Aisling, and getting her involved in something that didn't include playing video games, talking about rattlesnakes, or researching black holes for a change. :-)

When you’re raising an autistic child, even the simplest activities and milestones are severely complicated. Imagine, then, dealing with something as inherently complicated as puberty! I’ve spent several months trying to help Aisling understand that her body is preparing to go through some pretty intense changes, and I haven’t had much luck in “getting through” to my daughter. “I don’t want to grow up!” she’ll screech. “I don’t want to have kids!” And while I’ve tried to explain to her that she never has to have children if she doesn’t want them, she has remained completely opposed to the idea of ever growing, ever changing, ever being anything than the little girl she’s relatively comfortable being.

And believe me — I understand that this isn’t just an autistic trait. I remember being a young girl myself, completely resistant to the idea of ever growing up, playing pretend games much longer than other children, reading my fantasy novels and Arthurian legends. When the girls my age were interested in “talking about boys,” I was much more interested in talking about tesseracts from my favorite L’Engle books. I can’t imagine that going through these intense, life-changing events is easy for anyone.

Still, it’s a lot more difficult to explain the nuances involved in such events to an autistic child. There’s a severe communication barrier when your child takes everything literally and can’t comprehend that there are levels and degrees to any scenario. For Aisling, life is black or white, good or bad. It’s difficult for her to understand that uncomfortable and unpleasant things will happen to her body, and that it won’t be the end of the world. She automatically takes the scenarios to the extreme, assumes the worst, and immediately panics.

With these difficulties in mind, I recently purchased a series of American Girl books for Aisling — the first of which being The Care and Keeping of You: The Body Book for Girls. The book did an excellent job at breaking down extremely dense and hard-to-explain issues in simple and easy-to-understand steps, covering a wide range of topics including healthy diets, the importance of exercise, important hygiene tips, hormonal changes, and mood swings. I went through a couple of pages each night with Aisling. She was not always receptive and attentive to the book, but she took a great deal more interest in the subjects as presented in those pages than she ever has in spontaneous conversation. I think the fact that the book is brightly illustrated helped a great deal — Aisling has an affinity for picture-books, and even though she’s a very strong reader, she tends to loose interest in any book that doesn’t include quite a few illustrations. I was pleased that this book included illustrated examples and diagrams that helped set up a common vocabulary so that Aisling and I could discuss the changes she is going through in a very clear and intelligent manner.

And we did discuss these issues, which was what pleased me the most. Aisling was able to identify with the girls who were pictured in the book and could let me know if any of the issues we discussed had ever happened to her (for instance, there was a section on nightmares and being afraid of the dark, and Aisling talked about how she had gone through these steps, how we’d purchased her a night light, etc.) She finally felt comfortable in simply telling me that she was afraid of eventually getting her period, that it sounded disgusting and she was terrified she might bleed to death — things we’d never really discussed before. And I was able to provide comfort, to assure her that it was okay to be afraid, but that these changes were quite normal and that she would be fine, that I would be there for her. I finally feel confident that I’ve “got through” to Aisling about this, that I can rest easy knowing she’ll at least understand what is happening to her whenever it does happen to her, and I’m also fairly certain she feels comfortable enough to come to me for help when she needs it.

I can’t imagine these sorts of conversations are easy for any parent, but the communication problems caused by the autism had always further complicated these talks. In addition, many of the books geared towards parents with autism have always been slightly skewed due to the fact that a large majority of autistic kids are male. I recently picked up the book Girls Growing Up on the Autism Spectrum: What Parents and Professionals Should Know about the Pre-teen and Teenage Years, and I’m hoping it will provide even more helpful advice in dealing with the many issues that are sure to come up. In the meantime, I can take a small amount in a comfort in the fact that Aisling and I have walked through several basic issues in self-care, and that I have a book full of illustrations and facts that I can reference as further issues arise, as they inevitably will. I’m very, very grateful that I live in a day and age when so much information and so many tools are available.

One of the things I believe helped my daughter’s development more than anything else was how young she was when we discovered there were issues, and how early in her development we were able to get her treatment. I’ve had many conversations with parents over the years, and it always seems as if the younger the children were when they began receiving services, the stronger and more dramatic the benefits they received. Additionally, the state of Tennessee has a wonderful early intervention program that was really a godsend for my daughter and me.

Tennessee Early Intervention System, or TEIS for short, immediately contacted me once Aisling received her first diagnosis of Development Expressive-Receptive Language Disorder. Kathy Jeffries was assigned to be my Service Coordinator, and there were many times I was convinced she must be a Guardian Angel sent to assist me in dealing with these new and often overwhelming challenges of raising a Special Needs child. Kathy Jeffries first impressed me because she came to me. She called and got directions to my singlewide trailer in the extremely remote, rural area in Greene County where I lived next to my grandparents. Even though I was attending East Tennessee State University, working towards my Bachelor of Arts in English, and was making the 45 minute commute to Johnson City on a daily basis, she still insisted on observing and testing Aisling in her home environment where it was more comfortable and convenient for us.

Kathy Jeffries was a real advocate for my child, and was an amazing source of information and tools. She performed many of the basic preliminary development tests on Aisling in the home, and then helped me set up speech therapy through the university I was currently attending. She gave me literature, worksheets, workbooks, ideas for activities and exercises that were designed to help Aisling with her developmental delays. Kathy also helped Aisling get on the waiting list for one of the regional leading experts of autism in child psychology, so that eventually we were able to get a diagnosis of both autism as well as sensory integration dysfunction. She referred me to the Tennessee Infant Parent Services program, or TIPS, who would come out to my house on a regular basis and offer further ideas and literature on ways I could assist in the development of my daughter. Understanding that I was a single mother attending college full-time without any financial assistance from the other parent, Kathy also referred me to the Social Security office to apply for Supplemental Security Income benefits. Additionally, she encouraged me to apply for fuel reimbursement each month, since Aisling’s programs and therapies were all a rather long drive from home. I had absolutely no idea what I was doing, where I needed to go for help, who I needed to contact, or what services my daughter really needed, but Kathy Jeffries and the Tennessee Early Intervention System were able to answer all these questions and guide me towards establishing a strong and healthy foundation to assist my daughter with her pervasive developmental delays.

When people see Aisling today, they are often shocked to learn that she’s autistic because she’s so incredibly high-functioning. When I tell the story of where she was at the very beginning of her treatment – how she never made eye contact, how she avoided hugs and touching, how she spent all her time stacking her toys and lining them up in rows, how she spun around in circles and could only say the word, “no,” they can’t even believe it. I remember picking Aisling up from child care at East Tennessee State University during her first week at the center. She was sitting in the sandbox, pouring sand through her fingers in a highly repetitive fashion. She was staring off into space, and she didn’t acknowledge me when I was standing there, when I talked to her. I had to get down on my knees beside her and gently shake her in order to get her to respond to me. Even though we wouldn’t get a clear diagnosis for another six months, I think that may have been the moment when I accepted that she was probably autistic.

All of the services she received in those early years helped jumpstart her progress such an incredible degree. She had an amazing team of speech therapists through East Tennessee State University, an amazing group of child development specialists working at the child care center who took an active role in implementing the various treatments as she interacted with other kids, she had an excellent child psychologist who was incredibly knowledgeable about autism and was able to provide me with excellent ideas and methods I could use to assist her, and she had a wonderful occupational therapist who found incredible and creative ways to combine work on motor skills with sensory integration therapy. Over the next few weeks, I want to spend some time in this blog focusing on each of these areas, and how all of these early intervention services helped Aisling make incredible and unbelievable progress in all aspects of her life, and how these services have helped shaped the person she is today.

Rationally, I know this. But as the parent of an autistic child, logic and rational thinking are often obscured by a much more powerful force: guilt.

I was only nineteen years old when I discovered I was pregnant. Even though I was an Honors Student midway through my second year of college, I confess that I barely knew what I was doing. While I had carefully considered all of the options available to young, unmarried women burdened with unexpected pregnancies, as soon as I saw the ultrasound image of the tiny speck of cells that was my unborn six-week-old baby, all I knew was that I wanted to bring that little speck of cells into the world, and all logical arguments were obscured by another powerful force: love.

As a young unmarried mother-to-be, I had a rather emotionally tumultuous pregnancy. While I had the love and support of my family, the father of my child was extremely inconsistent in his affections and intentions. I was still taking a full course load of college classes, working my way through the Honors Program, and the stress along with the pregnancy took its toll on my body. To make matters worse, my dorm building was deemed unsafe and was condemned while I was pregnant (fortunately, I was able to rely on the kindness of friends to house me for the remainder of the semester). I suffered from morning sickness, exhaustion, low iron, and depression. In hindsight, I have often wondered how all of these factors may have affected Aisling's prenatal development.

My labor with Aisling was also very long, intense, and problematic. I'd chosen to have Aisling at a Birthing Center with Nurse Practitioner midwives in attendance, because I'd wanted to have a completely natural, completely drug-free experience. Unfortunately, I was a 4'11'' tall young woman trying to give birth to an 8 lb 4.6 oz child. After twelve hours of intense and painful contractions with little progress, I was rushed to the local hospital where, after a few hours of rest, an epidural, and a few more unsuccessful tries, my daughter was finally born via emergency c-section. She had no post-natal complications, and there were no signs of fetal distress. She was extremely healthy, and after I had a couple of nights to recover from my surgery, they sent us both home.

In hindsight, Aisling's autistic traits were immediately apparent, even though I didn't realize it at the time. It was very difficult to get her to breastfeed, and even when she did she wouldn't make eye contact with me. She disliked being held, and she refused to sleep in the same bed with me -- she preferred being alone in her crib, without blankets, pillows, or stuffed animals. She would only wear soft pajamas -- any other type of clothing made her irritable and often led to tantrums. She was happiest when she was sitting by herself in her bouncy chair or her baby swing, and she took little interest in the people around her.

I didn't realize this at the time, of course. I was young, and this was my first child. She seemed to be hitting all the proper development benchmarks at the right times (sitting up, grasping, babbling, crawling, walking, making specific series of sounds) -- she was just missing a subtle social nuance that I simply did not recognize. She would babble, but not to try to interact with people. She would use repetitive sounds, but she wouldn't use them in a purposeful manner. I often joked that she really only saw me as a "walking milk factory," that she only loved me because I fed her but beyond that she had no use for me. In truth, and despite my best efforts, I never felt as if she wanted to "bond" with me in those early years. Looking back now, it's obvious why.

Still, there's the Guilt. I should have prepared better, I should have better insulated myself against emotional breakdowns during pregnancy, I should have gone to a mainstream doctor in a regular hospital, I should have noticed the precursors of my daughter's lack of interest in social interaction. In the books that I read, I am assured that this is a normal reaction, that many parents of autistic children feel as if somehow they are to blame for their children's condition. These books also assure me that such thoughts are irrational -- that while there seems as if there might be a correlation between ASD and difficult pregnancies/births, studies are still inconclusive in proving a cause-and-effect relationship.

The simple truth is that the cause of Autism is a mystery. As parents, we do the best we can with the resources we have to bring our children into this world, to keep them healthy, and to protect, guide, and love them along the way. As parents of children with autism, guilt is just one of the negative emotions we struggle with on a daily basis -- frustration, disappointment, and grief are also part of the package when dealing with a special needs kid. However, we are also blessed with the gifts of immense pride when our child progresses, absolute joy at the smallest accomplishments, constant amazement at the development milestones, and incredible delight at the unique quirks. Eight years ago, when I first heard the term "autism," I never dreamed my child would able to hold conversations, engage in imaginative play, or find boys cute. Every day with Aisling is an adventure -- one that is well-worth all of the tears, doubt, and guilt that come with the territory of being the parent of an autistic child.

I was a twenty-two-year-old single mother when my beautiful two-year-old daughter was diagnosed with autism. I'd brought Aisling in to the doctor because she was 20 months old and the only word she would use with any consistency or clarity was "no." The doctor noticed that she didn't respond to her name or to loud sounds, and was fairly convinced that she had a hearing disorder and referred us to an audiologist. The audiologist informed me that Aisling's hearing was perfectly fine, and referred me to yet another audiologist for confirmation. We were then referred to a speech pathologist, who diagnosed her with Development Expressive-Receptive Language Disorder. We began receiving services from the Tennessee Early Intervention System, where I found many people who became active advocates for services to assist my daughter. I was attending East Tennessee State University at the time, and I found a wonderful resource in their Speech Pathology department as well as their Child Development Services. At 30 months, we received an official diagnosis of Autism Spectrum Disorder and a referral for Occupational Services, which were to include Sensory Integration Therapy. Ever since all of these programs were put into place, Aisling has made amazing and steady progress.

Upon first meeting Aisling, most people don't realize that she is autistic, or that she has any developmental issues at all. She's extremely bright and rather articulate, even if she has rather odd ways of phrasing things and takes everything extremely literally (when I say "keep your eyes peeled" to Aisling, she screams and covers her eyes with hands.) She's a walking encyclopedia of video game history, and whenever we go to bookstore she wants to go to physics section where she patiently scours every book on astronomy for a single mention (and hopefully a picture) of a black hole. At recess, she prefers to swing and sing to herself rather than play with her classmates, and she has difficulty concentrating and staying on task when completing her homework. She quotes video games and random Internet skits, and she's extremely sensitive to various smells and textures. Still, she's come a long way from the tantrum-throwing, non-verbal, constantly "stemming" child who carried a single red drumstick around as a security blanket and refused to hug or cuddle even the closest members of her own family.  

In this blog, I hope to outline and describe many of my experiences as the mother of an autistic child. I want to talk about the diagnostic process, the benefits of early intervention programs, and the various treatments and therapies we've tried. I also want to share personal stories to help better illustrate what daily life with an autistic child is like. Aisling is, in many respects, a textbook case of autism, and in that same vein she's also an incredible success story. I feel as if I've been extremely blessed to have the privilege of being her mother, and I have been extremely grateful for all of the help, support, and encouragement we've received over the years. I look forward to sharing all that joy and hope - as well as the pain and disappointment - with my readers here.