One of these things just doesn't belong

When you first get an Autism Diagnosis, the specialist or neurologist you're working with will interview you. They ask questions about your child's development and grill you about tell tale signs. Fact: 99% of parents of children with Autism can look back and pin point developmental markers in infancy that could point to Autism and that the more they accept the diagnosis the more clear these things become. "Oh! That is why he cried so much!" "Oh right it makes sense now that he didn't want to be held" Fact: I look at the list of markers and I look back. I spend hours and hours combing through pictures of Asher's infancy and early toddlerhood, watching videos of him....and I still cannot pin point any of them.

Asher was a very social infant. He looked at people, connected with them, loved attention, flirted and cooed. He smiled constantly, he giggled a lot. He loved to be held, hugged, cuddled, he was easy to soothe. He only cried when he was sick or in pain. He was interested in things going on around him. He didn't adhere to a rigid schedule. Life didn't revolve around a routine that couldn't be altered without disaster. He was happy. Very happy. In fact we got constant comments, "I've never seen that baby cry!" "He always smiles" "It is weird how happy he is" Whenever we took him out to eat, he would play peekaboo with other customers, flirt with the waitresses....in fact all we ever heard was how social he was, how happy he was, how easy going he was.

I still find find myself looking through the thousands of pictures of my happy baby, looking for signs, things that would have clued us in. According to the neurologist at LADDERS, there had to be some signs. But honestly, just his allergies. Thats it. Yet last night, I found myself once again watching all 30 videos I have from when he was 18 months and younger. I watched them all from start to finish. And I sat there with this huge stupid grin on my face, because my baby...my baby was gorgeous, cute, funny, perfect. And he is still most of those things, but certainly not perfect. I think we all lose that as we get older.

Still I find it sad to watch the videos and look at the pictures. Because through that gorgeous, happy little chubby face, shines all my hope for his future. It is like playing "where's Waldo" except where playing "Where's the Autism?" Somewhere in a wide sea of smiles and giggles is the one picture/video, the one clue that we missed. The one piece of the puzzle that would have shown us what was coming.

Most days I don't think about it at all. I'm glad for Asher's happy infancy. I think having happy early days has programmed him to take a lot of the hard stuff he now has to face in stride. But then a day will come along where you can't help but stare it right in the face. And all you hear in your head is that jingle "one of these things just doesn't belong" and of course its always Asher Ben.

Kylee and Ethan had a birthday party a couple weeks ago. Birthday parties are always fun with Asher. They go one of two ways. The first way is the one we hope for, that Asher is able to stay calm and collected despite sensory issues. The second way, the one that happens more often, is that we have to leave with our kicking screaming child folded neatly under Phill's arms.

This party was different. There were maybe 8 children there. And all were in bright spirits and full of energy. He wanted to play with them, wanted to be part of the group and keep up. He was really trying, even though you could tell his sensory issues had him crawling out of his skin. At one point all the kids were dancing to the Brave Sound track. And there he was, eyes closed, hair disheveled, dancing with the kids and screaming and laughing right along with them. He fit right in, looked just like them apart from the silly cheese expression on his face. I watched from the doorway, loving each moment of it, soaking up the feeling of not worrying for a moment. And then I blinked and he was gone. Like literally gone from the room. I found him in the hallway, his fists bunched by his side, red face, not crying, but unable to speak. He tried to speak, but he couldn't get the words out. This is Asher over stimulated. So I brought him up to Kylee and Ethan's room and asked him if he wanted alone time. He was able to shake his head yes. So I left him in there for a little while by himself.

About 20 minutes later all the kids were screetching and laughing in the other room and I thought to myself "Damn Asher is missing a good time" and then my brother in law taps me on the shoulder and says "You should go see this" So I poke my head into the living room. I don't see him at first. At first I see the couch packed with all the kids sitting with their legs sticking out, they are watching Brave and are all kicking their legs and waving their arms...having a blast. And my eyes scan to the end of the couch and there is my little guy. Looking like everyone else, apart from the fact that he had no clothes on except his diaper. "one of these things just doesn't belong" So I turn to my husband and joke "I wonder which one of those kids has Autism" and we smile to ourselves and have a private giggle. Because as sad as it is to always have the odd one out, we both know that we have a smart child. He wanted to play with the kids, he wanted to dance and sing, and screetch and laugh. But something had to give for his sensory to allow him to participate, for Asher, it was his clothes. So we let him finish out the party in his diaper. It was nice to be able to do that, since we were at my sister's house. We know that it won't always be okay and that at other parties, we'd have to leave. But on this day, he figured out what he needed to do so he could belong. What a smart boy.

Whats Hope Got to do with it?

I often think back to the morning I first got Asher's diagnosis. I think about the way I reacted and wonder if I knew then what I know now, if I could have escaped the weeks and months of bouncing frantically between sadness, despair, and denial. I'm not sure. What I keep coming back to is hope. Hope is a very funny thing. When I first heard the diagnosis, it was like all my hope flew away with one small sentence. That everything I wanted for Asher flew out of our lives. A dark cloud on what had once been a sunny day. I felt guilty for a long time that my hope was fleeting. I felt like a failure as a mom that I wanted more for my child that maybe he could achieve. Why couldn't he just be good enough as he was? Tonight I wrote a 30 days of thankfulness post on Facebook about Happiness. If you're on my FB then you can read it there. If not, the gist was that we gave our son the name Asher because it meant "Happy and Blessed" that Happiness is what we most hoped our son would have. I thought about this a lot after his diagnosis. If it was true that I wanted happiness for him, wanted it more than anything else....then why is it my hope had vanished just by hearing the words Autism Spectrum Disorder? I struggled with this a lot. I tossed a lot of theories around in my head, it almost always came back to me blaming myself, that it was really my happiness I was worried about, that my pride was getting in the way, that it was my idea of what my life with Asher should have been that got smashed and I was confusing it with hope. But then one night I was reading a blog that was written by someone I actually don't like very much at all. Its funny how that works out sometimes. But anyway, this person is another special needs parent who is newer to the special need parenting thing than I am. Anyway, she talked a lot about the hope she had for her child, the things she hoped her child would be able to do, but that in the end it really came down to the fact that she hoped someday her little girl would get married. And it hit me, I had to stop reading, I had to cry. That was it. For me Happiness looks like a loving family, something you create with another person, a companion, someone you can laugh and cry with, have babies with, share your dreams with, grow old with. When I heard the word "Autism" I stopped being able to see that type of companionship for Asher. After all, not very many little girls wish they'll grow up and fall in love with an Autistic man, a man who will have social and emotional deficits, a man who may not be able to bring the emotional depth to a relationship that she needs him to have. And of course I looked in the mirror and I was disgusted. Holly Cole, be honest, you snob, you could not see yourself marrying an Autistic man. And I shook my head, I bowed it, I was ashamed. There was so much at that point that I did not understand about Autism, about Asher, about my husband, about my own self. So many answers that I knew I needed to uncover if I wanted to refind my hope for my son. I look at my little boy, with all the hell he goes through, all his struggles, but he giggles, he smiles, he hugs and loves, and is happy. His childhood is happy. And that has to be okay for now. I don't know if he'll be a happy man, I will do my best to teach him how to hold onto happiness. I don't know if he'll be successful, though I will try to teach him to be satisfied. I don't know if Asher will grow up and get married or have a best friend, but I will try to instill in him a drive to keep going after the things he wants in life. That way if he wants to love and connect to someone, that he'll give it every last bit of effort he has, and maybe some lucky girl, will be better than I am, able to see beauty and worth when it is right in front of her, maybe she'll grab him up. Maybe he'll make her a better person and she'll make him a better person. Maybe. Or maybe he won't need those things at all to be happy. Maybe he won't. And for right now my hope can hold hands with "Maybe" I think I can live with that. After all, hope is a funny thing. It has a way of creeping back into your heart, even when you're pretty sure it has gone away. Poof! There is is sneaking back up on you!

The most "portint" things in life.....

If you've never seen the movie The Help and plan on it, then you shouldn't read this post. You've been fairly warned. Asher was really playing well with his trains the other day, so I decided to indulge in some non child related TV. The Help just happened to be on and I was like "What the heck?" So if you've seen it, you know there are several parts in the movie where Millie, the "Help" leans down and tells the young girl she cares for, "You is special, you is smart, you is important" I thought this was really sweet. The third time it showed her doing this, Asher put his train down and said "Baby portint, right Mama?" Shocked. I know he didn't know what it meant. But he knew it was something good. And honestly, I tell him at least 500 times a day how much I love him, but I've never told him he was important. So I blabbered over myself saying "Asher of course you're important!" Anyway, I got to thinking about how important it is to build children up and how easy it would be to give them self esteem just by being conscious of the way we speak to them. So for the past three days since I saw the movie I've been telling Asher "You are special, you are important, you are smart, and I love you" And he loves hearing it! He has been coming up to me and saying "Mama, tell portint" so I'll repeat "You are special, you are important, you are smart, and I love you" Sure Sure, I stole it from a movie, but I'm not ashamed to admit it. It makes him happy. And someday he'll understand what it all means and maybe he'll remember me saying it over and over again and he'll believe it.

A Tale of Two Babies

I didn't meet my friend Michelle in the conventional way, we didn't go to school together, we weren't introduced by a mutual friend, we didn't play on a sports team together, none of those things. Michelle and I met on a pregnancy forum. There were thousands of girls on this forum, but Michelle, like a few others stood out. Why? Because Michelle and I were two of a small group of first time mothers to be, who were on bedrest with complicated pregnancies, this allowed us to stay up and chat about our fears until the early hours just before dawn. Michelle and I had a lot in common...including pregnancy complications, both were at risk for preterm birth, both had growth restricted babies, problems with blood pressure, on and off bedrest. I'm sure in the course of history people have bonded over odder things. But the similarities didn't end there. Despite having due dates weeks apart, we delivered our babies on the same day, within hours of each other. On April 16th, 2010 Olivia Greener and Asher Cole were born, small, perfect babies, who for the most part seemed healthy despite their beginnings in the womb. Within weeks of being born, it became clear that Asher was a very sick baby boy. By 11 weeks old he was hospitalized for his first major allergic emergency. This hospitalization lead to two very difficult diagnoses. I worried about him all the time, but despite having a sick baby girl of her own, Michelle would stay up late and talk me down. Within a couple months of being born, it became clear that Livy was also a very sick baby. She was tiny for her age, could barely eat anything without being sick, Michelle was forced to strip her own diet down to little more than rice and water to make sure that her baby could safely nurse. So we stayed up nights, chatting about medical food, allergies, projectile vomit, bloody diapers, rashes, breathing issues, babies in pain. Two babies born on the same day, with shockingly similar serious and rare medical problems, one with a diagnosis, one without. As time moved on and the babies traveled toward one years old, physically Asher thrived. Medical food allowed him to become healthy and strong. Meanwhile Livy Love was still a medical mystery. We would share pictures, ones of a giant boy, and ones of a tiny baby girl, who had a full head of hair and was walking. Livy had failure to thrive. As I rejoiced in our health care options and availability of medical food, Michelle and her husband fell into despair. Livy was so small she didn't even make the growth curve. At a year old, she barely fit in 6 month clothing. And still Michelle and I stayed up late at night, worrying about things like "How will we ever make them a birthday cake they can eat for their first birthdays?" One mom wondering if she was watching her baby die, and the other one worried that if she sent her precious boy to daycare, he'd die, it would only take a small mistake. But Asher continued to grow and Livy didn't. She became sicker and sicker. Michelle was worried, I was pretty worried too. How would anyone be able to pick up and move on if Livy didn't make it? I would look at Asher and think "its not right, they've always been the pair" I think of Livy and I think of Asher. Please God, take care of Livy. We what did we do? We shared medical food, calorie adders, recipes. Asher's doctors gave me extra formula and we split the orders, one half stayed in Massachusetts, the other half went almost to the other side of the country. Why? Because I'd had enough. This is what it came down to. One child very healthy despite having a rare and serious medical condition and the other child was dying before our eyes. Why? Because Asher was lucky enough to live in a state that mandated the insurance coverage of medical food for children and Livy was not. Whats the big deal? Couldn't they just buy it? Sure, if they wanted to be homeless, because medical food costs more a month than most people spend on their mortgage and other bills. So Livy did okay for a while, she didn't catch up, but she wasn't losing. It was okay, small steps, and boy that little girl was smart as a whip. Asher had his ups and downs. We would be told if his EE got worse or his weight dropped below a certain percentile he would get a feeding tube....we did not want it. We were readily given services to help Asher, had doctors who investigated further, fought for Asher and took his condition seriously. Michelle was lucky if she could find a doctor that even looked twice at her daughter. She traveled with her little girl, searching for a specialist that would help. And I watched from the other side of the computer and prayed for this little girl, born on the same day as Asher, to a very good friend. One very lucky toddler and one we were watching die. And then poof, one day a specialist listened, Livy was hospitalized immediately and scheduled for the placement of a Gtube, which would allow her to bypass impaired parts of her digestive track and get sorely needed nutrients. All this with no time to spare, because Livy was that sick. Thank you God for listening. Over the next few months, she gained weight, started to look like a toddler, not a talking, walking, smart as hell infant. And there was hope. Meanwhile Asher had his ups and downs and struggled in other ways. So we stayed up late and we chatted about how unfair life could be, how much crap could fall on some people and others lived with "first world problems" that would have been a blessing for either one of us. When things went wrong, we knew where to find each other. I'm still praying for Livy and I know Michelle is praying for Asher. He has his ups and downs, and Livy has hers, although her downs are deeper and scarier, two babies born on the same day, struggling to survive. Very recently Livy has started to fall behind again. She is in pain, unable to sleep well, not growing as well, and has started to have episodes that look like seizures. Looking at the symptoms, specialists have started questioning a disease that very few people know about called Mitocondria Disease. So we pray, because as much as it sucked to get Asher's diagnosis, we knew that if we were careful we could manage it. There are many types of Mito disease, and some of them are terminal. So we continue to pray for Livy, who should have been tested over 18 months ago when she was so sick we weren't sure she'd make it another week or two, like Asher was tested the first time he was hospitalized. We pray for a family who loves their little girl, for a friend, for a beautiful little girl, born on the same day as Asher, sharing the bond of childhood illness, knowing that while I trust that God loves us, I sometimes question the hand he has dealt us. But then I stop and think. Born on the same day, and I know God has brought us together for a reason <3

Com'on Mama, Follow Me......

"com'on Mama, fowwow me..." Of course Asher, I'll follow you.... "Mama, a roar, a yion, a baby Asha, now" Of course I'll pretend to be a lion with my baby Asher, we'll crawl on the floor and roar, right now, I'll stop typing on the laptop and I'll join you. "mama, a yion, a baby a mama, a yion, a roar" Yes Asher, I'm the baby lion's mama, okay I'll roar with you. "mama?" Yes baby? "Mama a yov a baby, a asha, a yion, right mama?" Yes, baby, Mama loves her baby Asher, her baby Asher Lion, thats right...always. So we crawl all over the apartment, I'm sure the people downstairs hate us, but we crawl and we roar and we pretend to purr while rubbing our cheeks together and doing nose kisses. He is smart, he knows Lions purr, Lions do face kisses, Mama Lions love their cubs. We crawl we crawl, for over an hour, my knees really hurt, but we don't stop crawling, honestly, when will he chat this much again?...it could be days, and I want to watch him be a normal kid for a while even if some of it gets lost in translation. We crawl. Eventually we crawl into his room, he stops at his closet and says "oh no! Mama Stop!" Whats the matter sweetness? "a baby a asha, geared" Why is baby Asher scared? "oh no, a monstah, a get" Baby there is no monster coming to get you! "monstah inna inna dark" Baby there is no monster in the dark closet. (Tears) Okay baby lets scare that monster, come on baby lion, follow me, roar, lets scare that monster. So we look at the closet, we roar. The mama Lion's roar is fierce, the baby lion roars with tears on his face. We roar until he laughs and says "Okay mama, fowwow me" he brings me to the tv and says "Haf a duder show a rocket?" Yes baby you can watch Super Why or Little Einstines. Later that night Phill and I are in bed. It took hours to get Asher to sleep. He doesn't sleep well ever. And we hear him cry. We try not to react right away, we pray he puts himself back to sleep, and we wait, barely breathing. Fingers and toes crossed. And then, we hear it, a tiny roar, then a louder roar, then a fierce roar. And then nothing. A few minutes later, I check on him...fast asleep with a sweet smile on his face. Go away scary Monster or Baby Asher Lion will scare you away! And he did!

The A word

I've avoided updating this blog for a while. Partially because life has been so crazy, but mostly because I didn't want to admit that there is something big that we should share. It is hard to say out loud still, though it has gotten a lot easier, I find sometimes it is even more difficult to see it in writing. So here goes. Asher started talking like a normal baby, in some ways he talked more. He was happy smiley easy going from day one. People often commented on how happy he was and that they never saw him cry, how social he was, how lucky we were to have a happy baby. And then around 16 months that started to change. He would cry a lot more, he stopped talking altogether and was pretty much silent. He lost all his language. He stopped flirting with people, became impossible to take out to dinner, or in public at all. I recognized the signs of sensory processing disorder, so I called Early Intervention. They came out and assessed him and decided that he qualified for services under a receptive language delay caused by sensory processing disorder. And therapy started. Asher started speech therapy twice a week, OT once a week, and developmental specialty once a week. But in the meantime, kids his age were passing him in milestones, kids younger than he was, passing him. Even though he was making progress, it wasn't enough. We spent months doing therapy, he made progress, but it became clear that we were looking at a referral to the public school system for testing and intergrated preschool. So I contacted a developmental pedi to help me with that process. In March (2012) I brought him to the developmental pedi. She was nice, she played with him, but he didn't want anything to do with her. He was having a bad day. A bad week actually, he'd had an allergic reaction and an ear infection. I told her this....she brushed it aside. At the end of the meeting, she said "Lets have a quick chat when he isn't here, next week, you can come before you go to work" I asked if I needed my husband with me and she told me "no it will be quick" So a week later I went to see her 45 minutes before I had to be at work. I sat down and without saying anything to me, she slipped a paper across to me. It was a diagnostic letter. I looked at her waiting for her to explain what it said and she told me "Just read it" So I did. And here is what is said in a nutshell "Asher Cole is a child you meets the diagnostic criteria for Pervasive Developmetnal Disorder-Not Otherwise Specified, Autism Spectrum Disorder" Wait.....what? I'll give you a second, it took my brain a few seconds to catch up as well. I finished the letter and calmly put it down. Show time. "Dr. Please explain to me the diagnostic criteria you used to determine that my child is Autistic" Instead of answering me, she handed me a pamphlet on stages of grief. "Dr. ________, I really need you to respect the fact that I come to this discussion with a very specific set of skills. I would very much like to hear your reasoning behind this diagnosis." She recommends I see a grief counselor. This was the quick appt I didn't need my husband for. The quick appt that it was okay to schedule before work. The no big deal appt that would change my life, Asher's life, and Phill's life forever. So what did I do? I went to work. I holed myself up in my classroom, shut the door and cried for hours. I canceled services for the day and sat at my desk and cried, like an idiot. Days passed and aside from my sister, we told no one. Maybe this post should have been entitled "The D Word" because denial hit hard. How could it be that I did not recognize Autism when I work with Autistic children? How could that be? How could this doctor not understand that I'm not biased, I'm not in denial....I called EI, I called her, I knew something was wrong, and I've known for a while....but wasn't it something different that was wrong? Wasn't it? How could the world's happiest, social baby be Autistic? How? So I did what only a rational mother convinced she was correct would do, I talked myself out of it, I scheduled a second opinion with the world's best Autism Research Clinic (LADDERS) and told myself, "You'll prove her wrong, because she is wrong" Who the heck cares if it costs every single cent we had saved for our home? Who cared when we needed to know? And in the meantime, we made the developmental pedi take the diagnosis out of his medical record. Though she tried to assure me that people would not read PDD-NOS and think Autism. Personally I think she must think I am stupid, because people would most definately see or hear PDD-NOS and immediately think Autism. But I digress. We waited what felt like forever for the LADDERS appt. We brought him in, he was tested, we had the follow up. We went in thinking, this is it, we'll get the confirmation that we were right and we can move beyond this. But silly parents, haven't you yet learned that nothing in the life of your medically fragile child is that simple or that easy? Silly Silly Prideful Parents. We didn't get our answers. What we got was "We're unsure, he is very complicated, We've never evaluated a child like Asher before, we can't say for sure." And then she said it "I'm uncomfortable taking the diagnosis away at, the moment" Do you know what it feels to have your hope crushed? I do. I felt it in that moment. To my credit, I didn't cry, neither did Phill. We just sat and listened. Here is what we learned. At two years old Asher's overall cognitive scores fell in the age 5.5 year range....smarty pants. At age two he could recognize all upper and lower case letters, provide sounds for them, and string some of those sounds together...hyperlexia. At age two he could read a few sight words...every mom's dream right? He could count past 50, do some simple addition, solve complex puzzles, create complex patterns....we should be proud right? But all those things are no good when you have the receptive language of an 8 month old and the expressive language of a 12 month old. Sure he can spit out memorized words, he has no idea what they mean. What good is it to read if you don't understand what you read? His phonemic skills are great, his rote memory is great....yay early literacy....only again it holds no meaning, no way to be applied to anything useful. And then she did it, she gave us hope. She told us "I have never met a child like Asher, he has the brightest social spark I've ever seen in a child that might be on the spectrum, he has the best play skills, he has the most social interest. I want to see Asher every three months, I can't promise anything, but I can tell you a time might come that this diagnosis goes away" We learned something else that day. Asher Cole is one of the most sensory disabled child they had ever seen in that office. So here is the question of the day, What is the difference between severe sensory impairment coupled with language delays and Autism? No one has a clue yet, at least not for Asher. Is it possible to have sensory impairment and language delays and not be Autistic?....absolutely! Is it also possible to have both those things be indicators of Autism? Absolutely! So what do we do? ABA! Hours and hours and hours of therapy. More speech, more OT, Preschool readiness. Therapy Therapy Therapy. And we were lucky because we had amazing therapists. OT, Developmental Specialty, and Preschool readiness through Early Intervention, ABA through Beacon ABA, and Speech (very expensive private speech) Worth every single cent. But there goes any hope of home ownership for now. And slowly I began telling people, first my best friend, my close online friends who are like sisters to me, a few family members, but no one else. No mention on FB...well until now. We didn't tell people, because honestly we were scared they would judge him, judge us, treat him differently, not have high expectations for him, brush him off....and to a certain extent we let our pride get in the way. I'm no longer prideful, I'm ready to say it out loud. My precious little boy is special in many ways and certainly special in ways I didn't see coming. Some good news...Asher has responded well to therapy. His language has really exploded...thanks to the talents of "Emmy" who is Asher's first love and the best SLP in the world, and thanks to "Tessa" Asher's ABA therapist who is his best friend. All we hear about all day is Tessa and Emmy...sometimes he mistakes people in public for them and is so dissapointed when they turn around and they are not Tessa or Emmy. Poor guy. Since March we've spent close to 25 hours a week in intensive therapies. I've had to stop working. But we're making the most of the time Asher has left before preschool. But what a difference! Asher's expressive Language is now getting pretty close to on age level, and his receptive is at the two year old mark. If I ask him to stop, go get something, sit down, look at me....he understands what I am saying. He can answer simple questions like "How old are you?" "What is your name?" "Do you want this snack or that?" People used to say to me "When he starts talking, there will be times you'll wish he'd shut up" I can safely say that I will never get tired of hearing his little voice. Never. So life has been crazy. So many things that aren't certain, except that we love our little boy and will do whatever we can for him. All this craziness that gets coupled with moments of joy. The joy of taking your child to the play ground, watching him approach another child, look that child right in the face and hearing "My mane Asha, what nor mane?" You can't measure the hope and joy those moments bring. And that hope has to last a long time before another moment like it presents itself, but I'll take it, hold onto it, and let it guide me until next time. I'll leave things there. I've said the A word, Autism... and I've finally admitted to the world that my son may have Autism. And just a promise to Asher that I will not change the way he sees the world, but I will change the way the world sees him, the way the world sees my beloved little boy.