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.