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.