Most of the women I know don't like to be photographed. I'm guessing it's because when those photos are downloaded from the camera they don't look quite like the professionally photographed, airbrushed images seen in magazines. I know that's generally why I don't like to have my picture taken. Besides the fact that I am truly not a photogenic person, I am very self-conscious in front of the camera, and overall insecure about my body and how I look. For a long time, I have shied away from the camera, and as I get older, I am starting to regret it.

A couple of weeks ago a friend posted on Facebook that since having her two kids, she has never really felt the same, and that she feels " gross, frumpy and just yuck." She said she hasn't felt pretty or attractive in years. This initial status post began a conversation about photographic worthiness and how in general, it seems as if a lot of women (and probably men too) feel like they shouldn't bother being in photos if they aren't attractive enough. It made me sad to think that this friend, and so many other women I know, including myself, miss a lot of opportunities to record wonderful times simply because they don't like how they look, and therefore don't want it etched in stone, so to speak.

I have never really enjoyed being photographed because of my insecurities, but since having Oliver, I have tried to allow myself to be photographed more, so that he will have pictures to look at one day, and know what his childhood was like, and what his mom was like. It's not always easy. I'm heavier than I have ever been which makes me that much less confident, and I just feel awkward and unattractive. In response to my friend's post, this is what I said:

"You do look amazing, so no worries there. But even if you didn't, you'd still be worth photographing with your boys!! After all, I doubt you'd ever look at an unattractive woman and say, 'What was she thinking being in that picture with her kids?'. Just some perspective!"

And it's some perspective I really need too, and one I have continued to mull over. I tend to be very forgiving towards other people, but remain harshly critical of myself, and physical appearance is no exception. How other people look has never been of much importance to me. I pride myself on being an extremely accepting, non-judgemental person and I have a hard time living in a society that often bases worthiness on outer appearance. This isn't to say that I don't enjoy the frivolity of fashion and having or seeing nice things, it just means that I don't place a lot of importance on them in terms of another person's worth. The next step, it would seem, is to treat myself as I do everybody else, and feel some sense of self worth without placing importance on my own physical appearance.

For me, one way to work on this is to allow myself to be photographed, especially with my son. He turned two a little over a week ago, and while I do have a bunch of photos of us together, I wish I had so many more. Maybe these pictures will act as a reminder to all of us to get in front of the camera. We're worth it!

Retreat Farm Visit

Yesterday when I woke up, I decided it would be a great day to take a trip to Brattleboro, VT to visit Retreat Farm, an old farm that now has a great petting "zoo" for kids and adults alike. We hadn't been before but had heard such great reviews from friends that I've been wanting to go all summer.

The car ride wasn't too long, but Oliver disagreed and was slightly disgruntled, though he rallied when we reached our destination. Not sure what to expect, we put him right into the stroller and made our way to the barn. We soon discovered that Oliver prefers his farm animals to be in books, or in the form of plastic figures in his play barn at home. It was difficult to tell exactly how he felt about the animals. At times he seemed apprehensive or maybe scared. At other times he clearly wasn't afraid, he just didn't care about them. I find Oliver's behavior around animals to be kind of strange. We have a dog and 5 cats, yet he almost never even notices that they are there. Occasionally, when he is aware of them, he seems either fascinated or annoyed by them. He really likes to feed animals, and thinks it's funny to do so, but that seems to be about it. At the farm yesterday, he only touched the animals when I did hand-over-hand to help him pet them. He most enjoyed feeling the thick hairs of a pony's mane and feeding the giant ox.

In addition to the animals, Retreat Farm also has a great play area for kids wth ride-on tractor toys, a play farm stand with wooden play foods, many farm animal puzzles, blocks and other pretend toys, piles of clean hay and bedding with child-size rakes and shovels for them to play with, and an old silo with a big pile of dried corn kernals for kids to play in. Oliver liked the corn, but was more interested in going in and out of the silo than actually playing in the corn.

Oliver checked out the play area in about 30 seconds flat. He was sort of intrigued by the tools for a moment and he sat very briefly on one of the ride-on tractors, but that was it.

The play area was located along a fenced area of blacktop, so really, it didn't stand a chance of holding Oliver's attention. There is nothing this boy loves more than running free on pavement, waving his arms about. Sometimes he holds his arms a bit in front of him, thumbs to fingers as if he's holding something, and he moves his arms up and down as he runs. I've come to wonder if he could be pretending to steer something, though I have no idea how he would have any concept of that. Watching Oliver run on pavement is actually one of my favorite things to see him do. There aren't many areas where it is safe for him to do it, and we tend to discourage it since he can't differentiate between what is and is not safe, but when he is able, it's as if his spirit is soaring. I think he could just go and go and go for miles running like that, and he'd love every second of it.






Since we weren't able to occupy a whole lot of time with the animals or play spaces we decided we would try taking a walk on the hiking trail that starts at the farm. Surely Oliver would enjoy this since he could have some freedom to walk and run as he pleased. Wrong. First we couldn't find the start of the trail and Oliver grew more and more impatient as we walked back and forth looking for it. When we finally found it, and set him down so he could go on his own, he sat down screaming, refusing to get up. He grabbed at his shoes, so I went to investigate and saw that his feet were being pinched a little by his new shoes so I changed to his preferred sandals and thought, "Okay, here we go. He'll be ready now." And for a split second he was. He got up excitedly and took off for the start of the trail. But suddenly, as if he had just run into a brick wall, he stopped, sat down in the dirt and started screaming again. I could find nothing else wrong wth his shoes, or any other article of clothing. We picked him up and walked a bit further, hoping to entice him into the fun of the walk. I spotted some Jewel Weed and was able to get some good laughs by having him touch the very full pods so they'd "Pop!" in his face. We set him down for one more attempt at a walk, but he clung on like a monkey and screamed some more. We called it quits and headed for the car. We had packed a lunch, which we ate at a picnic table with only minor struggling to keep Oliver at the table. We loaded back into the car, me sitting in the back with Oliver to try to keep him happy, and hopefully get him napping. He drank his cup of milk and I rested my head on the arm of his car seat. He had two of his blankets bundled in his lap and while initially excited by my head on his seat, he quickly settled in and began pulling and stroking strands of my hair. He did this until we both drifted off to sleep.

Our friends were right about Retreat Farm. It is a wonderful place. A wonderful place for Oliver? Not so much right now, but overall we did enjoy our visist, and are glad we went. My favorite part of the visit was going into the "chick room" where you are able to pick up and hold baby chicks.

I could have sat on the bench in that room all day just watching and snuggling the chicks. At first I picked one up, kissed it's beak and then Ken pointed to a sign. "No kissing the chicks." Oops. Oliver preferred to just sit on the bench, watching the chicks from afar, though he did at one point venture over to a nesting box to peek in.

Almost all of the baby chicks in the room were yellow, but standing out from all the rest was one lone black chick. We had tried to show Oliver chick after chick but he did not want to see them, and pushed our hands away. When I brought him this one little black chick, his reaction was completely different. He looked right at him, smiled, and reached out to gently pet his head. I like to think that Oliver realized this chick was different from all the others. It's as if he was saying, "Hey chickie, you and me are kindred spirits. We're different from the rest of our friends. Different, but still the same."

Mayhem Returns

So, I've been on a bit of a hiatus from the blog. I've taken off the end of July, all of August, and the first days of September. This means that I've taken off more time from the blog than I've been blogging in the first place. It's not that I haven't written anything...I have. Some of it will eventually be posted when complete, but others will be deleted because the writing isn't real.

There are a couple reasons why I haven't been posting anything, and I've only recently realized the bigger reasons. The not-so-big reasons are the more obvious ones of being busy, overwhelmed by life's tasks, and so on.

So, what are the bigger reasons? First of all, things have been going generally well for a while now, at least where Oliver is concerned. I tend to be somewhat of a negative person and while I have written about some positive emotions and experiences thus far, I've largely written about the difficulty of my current life and the struggles I face. It's much easier for me to write about the hardship. That's what I know and what I am comfortable with. I'm not good at being happy, or allowing myself to revel in the good times. I want very much to be happy, have fun, and find joy in life but something often holds me back. When I am in a good place of happiness and peace, something keeps me from wanting to share it with others. It's almost as if I have this reputation of being unhappy to uphold, and something terrible would happen if I were not miserable. In the past I've always used the brief and neutral responses of "ok" or "fine" when greeted with the common, "How are you guys doing?" Lately I find myself responding differently. It's the tone that's different more than the words. The words say we're "good," but the tone says, "actually, we're GREAT!" I'm kind of liking this. And what can I say? It feels good to feel good.


The other reason I haven't been posting has to do with truth. I started this blog as a place to record my experiences living the life I've been given and in my very first post, I said that I intended to paint a very honest picture of this life. There are some things I haven't been ready to share with the world, and by not sharing them, I felt like I wasn't being honest. I realize that I could have written about any number of other things and just entertained readers with cute photos, but in doing so, I would have been faking it. It would just have been filler material until I could write what was really on my mind and in my heart. I've come to a point where I am ready to share the parts of my life I couldn't before. Or at least some of them.

One thing you may not know about me is that I am a terrible procrastinator. And with that being said, I'll finish these thoughts tomorrow.

Mini Update

I have so far been quite surprised, and pleased, at how willing and cooperative Oliver has been for his ABA therapy sessions. At the same time, I have been hesitant to jump for joy that this therapy will go smoothly. I have learned that with Oliver, very little goes smoothly. Sure there are lots of bumps in the road with any typical toddler, but I feel like I am circling an elementary school parking lot with speed bumps every 10 feet and there is no exit.

Oliver has been somewhat unsettled this week. I'm really not sure why, though I suspect he may be having some cognitive developments that are stressing him. He seems to be very anxious at times, wants me by his side at every moment and almost always holding his hand when we are not at home (unless of course he is maniacally darting away from me towards the road) and even often when we are home. I really hate seeing Oliver in this state. He is not comfortable, he is not at peace with his surroundings or himself and he is not happy. He has had an increase in some repetitive and OCD behaviors which clearly reflects his distress.

I haven't been blogging as regularly as I'd like to. It's hard to type with Oliver clinging to me, and then when I finally have some space during nap and in the evening, I just need some serious ME time to unwind from all of own stress and anxiety. I do have a few things to report, such as how Oliver's appointment with his neurologist went, and what progress has been made in therapy. I also still need to redeem myself for the "Eat Your F**king Food" post. Soon, I promise.


For now, here is a photo of Oliver from last summer. How time flies...

Welcome to Holland

I really love how the path your life takes brings you knowledge that, had your life taken a different path, you may never have had. If my son did not have Autism, I would not have started Specialty Services with the May Institute, and would not have received their substantial "Welcome" packet. I may never have been fortunate enough to read a wonderful piece of writing that was included in that packet, "Welcome to Holland," by Emily Perl Kingsley.

I also really love uncanny coincidences. Anybody who knows Oliver knows that he has a slight obcession with Sesame Street. I didn't know who Emily Perl Kingsley was, so naturally I asked my good friends Google and Wikipedia. As it turns out, Kingsley happens to be an Emmy award-winning writer for Sesame Street. She joined the Sesame Street team in 1970, and in 1974 her son Jason was born with Down Syndrome. Through her writing and activism, she is responsible for changing many perceptions about Down Syndrome, and she is also responsible for adding people with disabilities into the Sesame Street cast.

In 1987, Kingsley wrote "Welcome to Holland," a piece that describes the experience of raising a child with special needs. I read this piece for the first time yesterday, and her description could not be more accurate. While I've never been, Holland will now always hold a special place in my heart and I suppose someday, I will have to take Oliver. Perhaps Emily Perl Kingsley should be receiving some commission from The Netherlands Board of Tourism.

Welcome to Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Finally Learning

It's been over 2 months since Oliver was diagnosed with Autism, and many more months since I suspected he had it. One would think that when your child is diagnosed with some awful malady, you would read every book you could get your hands on and search the web day and night for every bit of information you could find on the disease, its causes and it treatments. The first book I read after he was diagnosed? It was Ayelet Waldman's "Bad Mother: A Chronicle of Maternal Crimes, Minor Calamities, and Occasional Moments of Grace." It had nothing to do with Autism, and I read it simply because I heard the author speak at a local synagouge and I liked her. She told lots of great stories, she was funny, entertaining and as she talked about motherhood, she kept it real. Every woman, especially mothers, should read it.

Even before Oliver's diagnosis, I did buy a couple of books on Autism and I browsed them. I even bookmarked a few interesting websites. But for some reason, not until now, have I seriously hunkered down and wanted to learn. I really don't know what was stopping me before. Maybe I was just too lazy. Maybe I was subconciously in denial of the diagnosis, and the symptoms. Maybe I was scared of what I might learn, and what we might have to do. I'm a very observant person and just by having my eyes and ears open had already learned about some of the more common treatments for Autism, and also that there were kids that had so-called "recovered" from their Autism. I've been skeptical. I'm sure it has happened, and does happen to other people. But could it ever happen for me and for my son? I really didn't know.

Something in me has changed though, and I am now feverishly trying to learn and understand all that I can about Autism. It's all I want to do. How can I empty the dishwasher when I can be learning about a biomedical protocol for healing Oliver? How can I walk the dog when I can be studying about how a Gluten/Casein/Complex Sugar free diet might improve Oliver's eye contact, language and mood? How can I go to sleep at night when I could be searching for doctors who might actually want to help heal my son, instead of forgetting to return my calls. Naturally, since all I want to do is learn about Autism right now, it's also all I can talk about. I apologize if you are unfortunate enough to spend time with me right now, but, should you get an earful, I hope that you will be half as excited as I am that there may be hope and healing in the future for this very special boy:

More please!

Today was Oliver's third session with Kristen, his ABA therapist, and it was great. While shy at first, he smiled and was happy to see her. He gladly followed her into his bedroom where his sessions will be held. She had her two big bags full of toys and trinkets and she wasted no time pulling out some dolls to tempt Oliver with. He was immediately smitten. They played with the baby, then some playdough at his table, then some beads and a stretchy plastic tube that he could feed the beads into. She had a coffee can with a hole in the lid and a baggie filled with small miscellaneous items for him to put, one at a time, into the can. For today, this was only a play activity but next week, he'll have to start pointing at each item to indicate that he wants it. She will start out by demonstarting the pointing, and doing hand-over-hand to help him point, and eventually, requiring him to point on his own. After Oliver consistently points to demonstrate preference, signing 'all done' and 'help' will be the next things to teach him.

I used signs with Oliver when he was younger, probably starting around 9 months or so. I would frequently use the signs for more, all done, and eat. When he was 12 months, and still not really showing any interest in the signs, I started using them less consistently. Every couple of months I would start up again, using them intensively to try to get him communicating. Eventually it became apparent that he wasn't going to spontaneously immitate me and sign on his own. I then began focusing solely on the 'more' sign. For the past few months, Oliver has seen the 'more' sign demonstarted thousands of times. About 2 months ago he began putting his hands on mine and pushing them together to make the sign. He knew he would then be required to make the sign but since he couldn't do it on his own, after signing with my hands, he would hold his hands out to me so I could then sign with his. I am not always as consistent as I should be trying to teach Oliver these things. Some days I just don't have the energy to sign 'more' in between each bite at mealtime. Sometimes I just need him to eat so we can get out the door.

Yesterday and today we've been signing 'more' pretty intensively. There is a song Oliver loves that includes bouncing a fish around on a blanket. He loves it so much that it's highly motivating. We signed 'more' several dozen times as we sang the song over and over again last night. This afternoon, we did it again. After doing our routine of signing with each other's hands several times, Oliver began to stretch his hands out for me to sign with them, but he withdrew them. He looked intensely at his hands, pinched his fingertips tight and brought his hands together. After months and months of hand-over-hand, my baby signed 'more' ALL BY HIMSELF.

It will still take some time for him to perfect the use of the sign, and to be able to spontaneouly ask for 'more' of something without being prompted to say it, or having it demonstrated for him, but it is such a huge accomplishment for him to make the connection that he can be in control of his own hands, and make them ask for more without my help. I couldn't be more proud.

To be brutally honest...

As I write this, it is absolutely pouring rain outside and there are more than half a dozen people in the street in front of my house enjoying in it. Some are playing catch, others are riding bicycles, and some just splashing and shrieking in excitement. I sat down in our bay window to watch them. They are just out there, carefree, having fun, and living in this exact moment. I don't know who these people are. I don't know what struggles they face on a daily basis. And I don't know if they are truly happy. But just for right now, I wish I was them.

I'm not them though, and I can‘t be them. I have to be me. And if I were standing out there right now, I’d be sobbing, tears pouring from my eyes as quickly as the rain drops are pouring from the sky.

I am living a life that I don’t want to live. I am unhappy. I feel incredibly stuck, and I need help getting out of the place I am in, but I don't know where to turn for help. I really don't even know what would be helpful. I want to feel more freedom, less constraint. I want to be able to see the glass as half full, rather than always feeling like I am drowning in a half empty glass. I want to like the person I am, and accept myself for who that person is. I want to stop feeling like every hand I am dealt in this life is full of the losing cards.

Why am I writing all of this, and exposing the deep, dark secrets of my depression for the whole world to see? Because I am done pretending. I am done with the pleasantries. I am tired of putting on fake smiles so people think everything is ok. How could everything be ok? I know I should be grateful for all that I have, things could be worse, and yada yada yada…

I don’t care. This is my situation now. This is my life now. And to be brutally honest, it fucking hurts.

(un)Joint Attention

I'm willing to bet most parents don't know what the term "joint attention" refers to. If you are the parent of a child with Autism, you likely know what it means but, sadly, you probably don't experience it with your child very often, if at all.

The formal definition of joint attention is the process by which one alerts another to a stimulus via nonverbal means, such as gazing (and making eye contact) or pointing. When your baby sees a balloon and points, looking at you to make sure you are seeing this phenomenon too, that is joint attention. When your toddler finds a favorite toy and brings it to you in awe, that is joint attention. In typically developing babies, joint attention occurrs naturally. There is an innate desire to interact, communicate and exchange information with other people. The process of joint communication is often inconsistent or not present at all in autistic babies.

Oliver showed virtually no joint attention as a very young baby but at the time, I didn't know what the term meant, and I was too busy surviving the post partum period to notice if he was doing it anyway. When he was around 9 months or so, he did start pointing to a few things, particularly balloons in the grocery store. He would point and make a loud "Ooooooooh" but he never looked at me to share the excitement. After a couple of weeks, he stopped pointing altogether. I remember the first time Oliver showed a toy to another person. We were at a friend's house for a potluck and there were parents and babies everywhere. Out of the blue, Oliver took a ball and while looking right at him, handed it to one of the dads. He repeated this action with one other dad that night, and then he never did it again. I was so excited that night and promptly reported to Oliver's developmental specialist the next day that he had shown someone a ball! He had engaged in joint attention! I watched and waited for more sharing from him, but it didn't come. It seemed that just as fleetingly as the pointing, his "showing" of cool toys was gone as well.

When joint attention is not present, there is very little reward to the child when they play, and since children learn largely through play, delays in development occur. Characteristic of a child with Autism, Oliver lacks good play skills. Few toys interest him, and when one does, it is usually because he can engage in some sort of repetitive 'game' with it. He likes barns because he can put the animals in and out. He likes dollhouses because he can sit the people in the chairs over and over. A common activity for Oliver is emptying the contents of a toy bin. He will pull one item out at a time, briefly examine it, and chuck it onto the floor. Occasionally he picks things up and puts them back.

Engaging Oliver in an activity is very challening, and quite honestly, leads to a lot of disappointment. Not disappointment in him, but disappointment, and sadness, that I can't truly play with him. He prefers to play alone, when he does play, and when I try to join him in an activity, he leaves it. Try to imagine what it would be like if every time you tried to read your child a book, make animals sounds with them, stack blocks, or do a simple puzzle, they just walked away. It's not that Oliver doesn't want to play with me, or with anybody else for that matter, he just doesn't know how. He doesn't even know the possibility exists.

For me, the inability to play with Oliver is devastating. Sometimes when I am with a friend's child, I find myself playing with them instead of Oliver. This always leaves me feeling really guilty, because I enjoy playing with an engaging child so much more than playing with my own. I love Oliver more than any other child in this world, and I will never stop trying to play with him, but the hurt I feel right now because of what I'm missing out on is unreal. If I were granted three wishes, my number one wish would be for Oliver to join his attention with mine, and play with me.

Kristen

This morning, as 11:30am approached, the anxiety that I had been feeling since last night heightened. It became far less general and much more acute. I was almost panic-stricken. A woman, Kristen, was about to walk through my door and it felt like she held our future in her hands. This is not entirely, or even remotely accurate, but it's how it felt in the moment. The Specialty Services that Oliver is to receive from the May Institute are funded by the Department of Public Heath until a child is 3 years old. That means that with our Autism diagnosis in hand, we are golden until Oliver turns 3. When he turns 3, he is no longer eligible for Early Intervention services and responsibility for his education is transferred to the public school system. Also at that time, any services he may continue to receive from the May Institute will then be billed to health insurance. This ultimately means that we have 18 months to work with Kristen. Eighteen months for her to work miracles with Oliver. To get him to look at us, respond, and engage consistently. To teach him how to imitate so he can learn to point, gesture, sign, repeat sounds and words and participate in an infinite amount games and activities. So, you see, this woman is relatively important. I didn't realize until that panic-stricken moment that what I was most anxious about was her, and how she would mesh with us. I did not want to waste any precious time with somebody that wasn't 100% on our side and there to help.

When the moment arrived that she actually did walk through my door, most of my worries abated. She turned out to be everything I could hope for in a therapist for Oliver. She is kind, understanding, patient, energetic but not hyper. It was obvious that she thoroughly enjoyed playing with Oliver, even when her attempts to get his attention failed. I could see her observing him, making mental notes of his likes and dislikes, what his strengths and weaknesses were, thinking of what areas we might work on first. It was apparent to me that she genuinely wanted to be there. I have been disappointed before by support people who have worked with Oliver and I have learned that having the right person is key. One specialist Oliver saw even told me that she didn't really like kids.

Today's initial session was scheduled for 2 hours. I wasn't confidant that Oliver would last 15 minutes, nevermind the entire 2 hours, but he surprised us all by being relatively engaged for 1.5 hours before he took my hand to pull me out of the room as if to say, "I'm done now." At first, I sat down with Corinne, the lead therapist who will come periodically to monitor things, and did paperwork. Oliver was in his bedroom playing with Kristen. He's not fond of separating from me, so inevitably he came out to get me several times. We decided it might just be easier to do the paperwork in his room so I'd be within easy reach. We all sat on the floor with him and he became much more comfortable and playful. During that 1.5 hours, he looked at books, played with his farm animals, played playdough, climbed, rolled, got tickled, played with several of Kristen's toys (she came with 2 bags of toys!) and by the end, he was smiling, clapping and squeaking out a "Yay!" in response to Kristen and Corrine's claps and Yays. I really don't think I could have asked for a better first session, and I now look forward to Thursday's with much more excitement than trepidation.

A very big thumbs up for Kristen.

First Days: Summer & ABA

Tomorrow Oliver and I will meet a woman named Kristin. She is an Applied Behavioral Analysis therapist with The May Institute and she is going to become a very important part of our lives. To begin with, she will only work with Oliver two days a week, for 2 hours each time, in our home. In a couple of weeks, a second therapist, Jamie, will join us. She will do six hours to start. Within the next month, Oliver will be up to 10 hours of Specialty Services a week. Once I know how he handles that, the pace at which we increase to 20-25 hours per week will be determined.

When a child is diagnosed with Autsim, they become eligible for "Specialty Services." Essentially, these specialty services are supplemental to the Early Intervention Program and provide intensive 1:1 therapy, typically at the child's home, focusing on the key characteristics of Autsim. The most popular therapy used is Applied Behavior Analysis, or ABA. Rather than try to define ABA for you, I have copied the following from the Autsim Speaks website. I think it gives a thorough picture of what ABA therapy involves, on the part of the therapist, the child and the parent.

Done correctly, ABA intervention for autism is not a "one size fits all" approach consisting of a "canned" set of programs or drills. On the contrary, every aspect of intervention is customized to each learner's skills, needs, interests, preferences, and family situation. For those reasons, an ABA program for one learner might look somewhat different than a program for another learner. But genuine, comprehensive ABA programs for learners with autism have certain things in common:

•Intervention designed and overseen directly by qualified, well-trained professional behavior analysts
•Detailed assessment of each learner's skills as well as learner and family preferences to determine initial treatment goals
•Selection of goals that are meaningful for the learner and the family
•Ongoing objective measurement of learner progress
•Frequent review of progress data by the behavior analyst so that goals and procedures can be "fine tuned" as needed
•Instruction on developmentally appropriate goals in skill areas (e.g. communication, social, self-care, play and leisure, motor, and academic skills)
•Skills broken down into small parts or steps that are manageable for the learner, and taught from simple (such as imitating single sounds) to complex (e.g. carrying on conversations)
•An emphasis on skills that will enable learners to be independent and successful in both the short and the long run
•Use of multiple behavior analytic procedures - both adult-directed and learner-initiated - to promote learning in a variety of ways
•Many opportunities - specifically planned and naturally occurring - for each learner to acquire and practice skills every day, in structured and unstructured situations
•Intervention provided consistently for many hours each week
•Abundant positive reinforcement for useful skills and socially appropriate behaviors
•An emphasis on positive social interactions, and on making learning fun!
•No reinforcement for behaviors that are harmful or prevent learning
•Use of techniques to help trained skills carry over to various places, people, and times, and to enable learners to acquire new skills in a variety of settings
•Parent training so family members can teach and support skills during typical family activities
•Regular meetings between family members and program staff to plan, review progress, and make adjustments

Despite all of the information I can read about what ABA therapy is supposed to be, I still have no idea what to expect. There are a lot of videos of ABA sessions on Youtube, but none really with a child as young as Oliver. I feel like I've been waiting an eternity for tomorrow, and now that it's nearly upon me, I am scared to death. The first two weeks of services will be used for the therapist to get to know Oliver, and to get Oliver to like and trust her. The third week is when my anxiety will really soar. That is when the actual therapy, and work will begin. And then, the pressure is on, and all of my what ifs will be answered.

What if Oliver cries because I'm not with him?
What if Oliver throws a tantrum because he doesn't want to do a task?
What if nothing is motivating enough to make Oliver perform a task?
What if they can never teach him to imitate?
What if he never talks?
What if he never says mama?
What if I can never potty train him?
What if he throws things on the floor forever?
What if he never wants friends?
What if he can't go to college, or have a job?
What if I lose my mind wondering "What if...?"

Ok. So the first two what ifs will probably get answered in that third week, but the others? Let's just pretend I didn't worry about those for now, ok?

Mealtime Part I: In which I sound like a mean, horrible mother

Here's a rundown of what Oliver was offered to eat today, and what Oliver actually ate today. This is representative of a typical day.

Breakfast in living room:
Offered: Blueberry cereal bar, rasberries, yogurt
Ate: Blueberry cereal bar
Threw on Floor: Rasberries

Snack in living room:
Offered: Pirate Booty brand crunchy corn sticks, 1/2 + 1/2 mix of coconut milk and oat milk
Ate: 1/2 of milk mix
Threw on Floor: corn sticks and sippy cup with remaining milks

Lunch in high chair:
Offered: Grapes, Cucumber, Hummus, Pita
Ate: Grapes, 1 cucumber round
Threw on floor: Cucumber, hummus, pita

Snack in car and at Sarah's house:
Offered: Snap Pea Crisps, dried cranberries, corn puffs
Ate: dried cranberries
Threw on floor (of car and Sarah's house): Snap Pea Crisps, Corn Puffs

Dinner in high chair:
Offered: Macaroni and Cheese, Broccoli with Coconut Oil, Applesauce with Mixed Berries
Ate: All of the above!
Threw on floor: Broccoli, spoon, sippy cup

He also drank two 8 oz. cups of cow's milk, one right before nap and one right before bed.

So, you can see that a fair amount of food was either thrown away or eaten by the dog
today, as is the case most days. Yesterday I spent nearly $300 on groceries. For the most part, I only buy organic foods for Oliver, especially those on the 'dirty dozen' list. When he repeatedly throws those pricey foods on the floor, it aggrivates me to no end.

Many of you have probably seen the book Go the F**k to Sleep by Adam Mansbach circulating around facebook. I am proposing that a series be created. The next book: Eat Your F**king Food!




Stay tuned for Mealtimes Part II: In which I redeem myself, I hope.

Nicknames & Blog Titles

Tonight's post is on a lighter note...

First, I want to clarify something. Those of you who know me know that I am married to Ken, Oliver's father. Because this blog is about my own experiences, for the most part, Ken will not be included. This is not to exclude him, but to avoid speaking for him about his own relationship with and feelings towards Oliver. Occasionally, however, I will refer to "we" or "us" and I am referring to both Ken and I...such as in this post.

At not quite 2 years old, Oliver has had a lot of nicknames. I mostly refer to him as Oliver, occasionally Ollie, but rarely any of his nicknames, though they all have special meaning to us. Here are just a few of the more special ones...

The first nickname we gave him was "Crappy Baby." It's not as bad as it sounds. Really. If you read the last post, you know that Oliver was an impossibly difficult infant, crying and fussing most of his waking hours. Needless to say, this left us frustrated, feeling helpless, and not really enjoying our early parenthood experience. Oliver had a pair of brown fleece polka-dotted footie pajamas with a monkey face on the butt and the embroidered words "Happy Baby" on the front. One evening as I was dressing him for bed, I saw the words and said to myself, "Yea, more like Crappy Baby." From then on it became a joke between Ken and I that we would take the 'H' off and re-embroider a 'CR.' It was always said lovingly, and I still have the pj's to prove we never did alter them.

The second nickname Oliver was given was also the title of an old children's book I happened to see at a tag sale. It's about a little bunny who doesn't like anything or anybody and is always fussing, so nobody likes him. His name: Fussbunny. In the book, Fussbunny eventually learns to enjoy things, and makes friends. I hope that someday my little fussbunny learns that things are ok too.

Oliver was very fortunate to spend his first year living with two of his cousins in the apartment above us. They were so excited to welcome Oliver and it has warmed my heart to see how much they love him. My niece Sophia, the ultimate picky eater, adored Oliver so much that if he ate something, she would it eat without question. If he forgot a toy upstairs in their apartment, she was frantic to get it back to him. And some days, my sister-in-law would knock on my door apologetically because Sophia just wanted to see Oliver, and wouldn't calm down until she could. I never minded and always loved how much he meant to her. My nephew Aiden was quite smitten with Oliver too. Aiden is an incredibly kind, sweet and loving boy. He was always gentle with Oliver, and very patient when I had to interrupt Candy Land to tend to Oliver. Giving nicknames comes naturally to Aiden. When he was very young, under two I think, he decided to start abbreviating names. Memere became 'Mem' and "Trittle" became 'Trit.' At one point, Aiden had a soft spot for robots and Oliver happened to have a pair of pants with robots on them. The nickname "Ollie Ba-bot" was born when Aiden announced that Oliver was a baby robot, or ba-bot. Now that he's more of a toddler, we call him Ollie Tod-bot. Aiden gave various other nicknames, such as "Cutie Cowboy" based on whatever outfit Oliver might have on. Despite now living 5 hours away, Oliver's cousins still talk about him and love to see his pictures on Facebook. I think that first year was enough to make them love him forever, and as Oliver gets older, it is my hope that he will enjoy visits and grow to love Aiden and Sophia just as much as they love him.

The final and most fitting nickname, and hence the title of this blog came about one night while watching TV. We saw a commercial for Allstate Insurance featuring Dean Winters as 'Mayhem.' At the time, Oliver's favorite activity was clearning every surface, emptying every drawer and tossing every toy into the kitchen. The disaster he could make in under a minute was unreal. Come to think of it, it still is. We decided that when Oliver entered our lives, so did mayhem. If you haven't seen any of the commercials, look them up on Youtube. They are great. And remember, Mayhem is everywhere. Protect yourself.

"He seems normal to me..."

One of the most common things I hear when I tell somebody that Oliver has been diagnosed with Autism is, "What? He seems like a regular kid to me. Why do they think he is autistic?"

I have actually felt that something was "wrong" with Oliver since he was very young. As an infant he had many feeding difficulties including delayed sucking and swallowing, he cried often and for long periods, he was near impossible to soothe and he didn't seem to react a lot to different stimuli around him. Between 3-6 months is when I really started to suspect something. He never really cooed or made any noises, besides crying. He only smiled if we worked really hard for it. He almost never laughed. While he didn't respond much to the typical things a baby enjoys, he would smile or laugh for unusual reasons. He especially liked being dressed. He would laugh as his arms were pulled through sleeves. He also loved a lot of rough play. Swinging, tossing, rolling and other very active things could elicit some laughs, but they had to be faster and harder than typical baby play. We now know that Oliver has Sensory Processing Disorder, which commonly occurs with Autism.

Family, friends and even the pediatrician continued to reassure me that everything was fine. As Oliver neared 12 months I waited, quite impatiently, for some indication that he would talk. It just never came. He still wasn't babbling and continued to be a very quiet baby. People often commented on what a serious little man he was. One of the classic red flags for Autsim is the loss of any language. At around 6 months, Oliver began imitating the hand motions for itsy bitsy spider. After a week, he stopped and never did it again. At 12 months, he pointed. After a couple of weeks of naming objects for him, he stopped pointing altogether. His clap would come and go. Now at 21 months, Oliver doesn't mimic gestures or sounds.

So many of his behaviors that concerned me were subtle. I noticed, but most people didn't. Because Oliver is my first and only child, people just thought I had typical first-time mom worries. I definitely did, but I was also very in tune with the quirky baby in my arms.

Today, people still question the diagnosis, because he does appear to be a normal todder. He's willful, loves to climb and slide, tests the rules, throws tantrums and is obcessed with Elmo. What people don't always see is the lack of consistent eye contact, not responding to his name or being spoken to in general, his preference to be alone, rather than joining a group of playing children, his excessive fussiness, repetitive "games" he creates for himself, odd sensory-seeking behaviors like licking every rough surface he can find, and much, much more.

Many people are unaware that Autism is a spectrum disorder. It can affect people very differently, ranging from mild to severe. Some, like Oliver, are very high functioning and for the most part, can blend in. Others, who are lower on the spectrum, may present in a much more classic way - hand flapping, non-communicative, strange behaviors.

So, ultimately, while I am thankful that Oliver appears normal to you, I know that he is really a very special boy who has very special needs.

A is for Autism

I have wanted to start this blog for some time now to document the journey I have begun. Forty-five days ago, my son was diagnosed with Autism. He was only 19 months old when he received the diagnosis, he's 21 months now. He is relatively high functioning, and while I struggle to remain optimistic about his future, it's not my nature to look on the bright side. I worry. A lot. It is my hope that through this blog I can share our experiences as we navigate the world of Autism, vent my sadness and frustrations, and share our successes and joys. I have always been a big thinker, but never more so than now. Some posts may not directly relate to Autsim, or even Oliver, but will be about my own thoughts in general. I intend to paint a very honest picture of what it's like to be both the mother of a young boy diagnosed with Autism, and a woman who suffers from depression. It's not always pretty, but occasionally, it's breathtaking.

Because I like lists, and word games, I sometimes choose a topic and then make a list of words for each letter of the alphabet. Here's my alphabetical list of how I feel right now about my son's diagnosis.

A - Autism. Dear Autism, I hate you.
B - Beautiful. What my son is.
C - Communicate. Something I worry I'll never be able to fully do with my son.
D - Devastated. How I've been feeling for a long, long time.
E - Energy. So much is required. More than I have, yet somehow I keep going.
F - Frustration. It's never-ending. His, and mine.
G - Guilt. I know it's not my fault, but maybe it is?
H - Happiness. Will he ever know what true happiness is? Will I?
I - Irrelevant. What I feel all of my hopes and dreams have become.
J - Joke. You're kidding, right? This isn't really happening to us.
K - Kindergarten. Will he go? Will he need extra help? Will he repeat it?
L - Love. No matter how trying, I still love him more than seems possible.
M - Missing out. On so many of the joys of motherhood.
N - Not Normal. I know, I know...what's "normal" anyhow?
O - Oliver. Sweet, loving, curious little soul who steals my heart every day.
P - Patience. Something I need so much more of.
Q - Quit. Motherhood is a job, right?
R - Rewind. Sometimes, I really wish I could go back in time.
S - Sadness. What I feel every day.
T - Tears. Something we both shed on a daily basis.
U - Unreal. You're still joking, right? This can't be my life!
V - Vulnerable. What he will be when his peers realize he is different.
W - Why? It's just so unfair.
X - Xenogenic. Derived from, originating in, or being a member of another species.
Y - Young. He's not even 2. We have time, we can help him. It will be ok.
Z - Zest. For life. I hope someday he'll have it.