The child that Autism forgot

This is a video that we found of Mowgli while we were cleaning up some files from our old computer a few months ago. In 41 seconds, Mowgli shows evidence of joint attention, shared enjoyment, social perception, and social reciprocity - which are all traits that you generally don't see in autistic children. He no longer does these things and he hasn't for quite some time, though occasionally we will see glimpses or short bursts of it, which makes us think that the same little boy is still stuck inside somewhere.

Amy and I beat ourselves up all the time about not catching it earlier. Yet, once you see evidence of normal development in your child, it is hard to believe that they could not only stop doing new things, but would also struggle with the stuff that they are already good at.

It is hard to watch this video, but it is also super-cute, so I like to watch it and half laugh/half cry on a regular basis. This is the boy that Autism forgot:

The diagnosis part 3

Ah the grieving process! Autism experts say that parents of children with ASD grieve for the child they had hoped to be raising. Prior to his diagnosis, I had always prided myself on letting my son's interests and personality develop organically. I didn't want to push him into being someone that he wasn't. I had assumed when I had my son that his development would be "typical". I remember praying during my pregnancy and his infancy, and saying often "God, I'm not asking him to be a genius, or the president or anything like that. I just want him to be happy, healthy, and safe." Despite my prayers, my child was now facing a disorder that could challenge all three of those wishes...and so I grieved.

There are five stages of grief, the first stage being Shock and Denial. I would say that this stage was pretty much my reaction to Mowgli's issues even before the diagnosis, not to mention the more intense feelings that I had after the psychologist said that he had autism. Although I had witnessed the signs, I had always insisted that his difficulties were limited to a speech and language issue. In fact, in the first few months, any time I had to tell someone that my son had autism, it stuck in my throat.

Alongside my denial was anger. Anger is the second stage of grief. I had plenty of that! I was angry at my son for not "snapping out of it". I was angry at the doctor who didn't identify autism sooner. I was angry at the school system for their difficulties in accommodating my special needs child. I was angry that no one seemed to notice that my little family was struggling with the chaos that occurs with ASD. I was angry at any person who had ever showed even the slightest hint of disapproval over my son's behavior. I felt like he was being singled out by the world - picked on unfairly. In fact, I felt picked on. But more importantly, I was angry at myself.

As the denial subsided, I held onto my anger, and the third stage emerged - Guilt. Why didn't acknowledge his delays sooner and get him early intervention? Did I do something during my pregnancy to cause this? It's in my genes. I wracked my brain for a cause, and always came to the conclusion that it was my fault. My little boy was going to struggle in life, and it was because of me. What was worse, I couldn't fix it. Fred and I had always achieved anything we put our minds to, and autism was something we just couldn't get a handle on. We needed other people to help us with our child, because we couldn't do it on our own. We felt defeated.

Then came the fourth stage - Depression. It was almost two months before I took the time to really cry over my son's diagnosis. I had made an appointment with my cardiologist because I was feeling an increase in "flutters", associated with a benign heart condition, a mitral valve prolapse. I had to undergo a series of tests, and then the doctor and I had a meeting to discuss the results. He said, "Well Amy, besides the MVP, I don't see anything else going on with your heart. Your blood pressure is excellent, your heart is very healthy", and then after a pause he asked, "Are you sleeping well?” Yes. “Has there been anything stressful going on?" I couldn't answer him, but just nodded my head in the affirmative. We stared at each other for a few seconds, then he said, "Is this stressful event temporary?" I shook my head "no", and my body slumped, large tears started falling into my lap. I tried to speak through my sobs and was finally able to choke out, "my...my son...has autism". He asked if he could refer me to a therapist, and I accepted.

The first therapist I saw was nice, but admitted to having no experience counseling parents of children with special needs. I finally found a qualified therapist through the psychologist who had diagnosed my son with ASD. After a battery of psychological tests, I was diagnosed with Major depressive disorder (fancy words for clinical depression) and panic disorder (aka really bad anxiety attacks). She recommended immediate treatment for the depression, and therapy to address my anxiety and grief. I followed her treatment plan, and began to feel the darkness lift. I was finally able to help my family, because the overwhelming anger, guilt, loneliness, and hopelessness were dissolving. When I was able to think clearly, I began to experience the fifth stage of grief - Acceptance.

So here we are one year and eight months post-ASD diagnosis. Some days I still feel the anger, guilt, and sadness. The grieving process is definitely not linear. Most days though, I wake up feeling grateful, hopeful, and inspired. When I gave birth to my son, I immediately declared that he was my "soul mate". I still believe that. To be someone's soul mate is to feel what the other is feeling. I feel his struggles, his frustration, but I also feel something else, something deeper. He knows he has something to contribute to this world. His confidence is awesome. His curiosity and playfulness are infectious. He has the ability to make almost anyone fall in love with him. His hugs are legendary. My son has autism, but autism doesn't have him.

And so begins the story of The Adventures of Mowgli in Utica.

The diagnosis part 2

After about an hour of answering the psychologist's questions, we had made it through the first part of Mowgli's evaluation. Both my husband and I asked the doctor if there were any clues as to what he thought might be going on with our son. "Well, based on your answers, it doesn't sound like your son has autism. We'll have to look at the other data to know for sure."

My husband and I both smiled with relief. Two weeks earlier a speech pathologist had determined that Mowgli had a severe speech and language delay, but she also suggested an autism evaluation. When she told me her suggestions, I played it cool, I had known it was coming based on how she had tested Mowgli. She thanked me for being so understanding, and said that most parents get mad at her for suggesting that their child has autism. When we hung up I was shaking with anger. I knew what autism looked like, I'm an aunt to an autstic child, and in my mind my son did not have it. We would prove her wrong.

The psychologist sent us home with several tests for us and the speech pathologist to fill out, and an appointment for Mowgli to be observed by the doctor. Two weeks later, we had an appointment to discuss the doctor's findings. He started by explaining to us the results of the tests that the speech pathologist and I filled out. The good news, the S.P. and I answered the tests in very much the same way. That meant that there was probably no parental bias on my part. The bad news, Mowgli scored low for speech, social, and cognitive abilities. I willed myself to keep it together, and watched my husband's face closely, for any reaction. He seemed ok - so far so good. The psychologist explained that because his speech and language was so delayed, he could not get an accurate assessment of cognitive ability or IQ, which is why those scores were so low. He did not however believe that Mowgli had "MR" (mild retardation). The doctor's official diagnosis was Autism Spectrum Disorder, more specifically Autism.

The next hour consisted of my husband and I questioning the doctor's diagnosis. We played good cop/bad cop, we suggested getting a second opinion, and we repeatedly made him explain his process of coming to a diagnosis. At the end of it all, we walked out of his office resigned to the accuracy of his diagnosis. Despite the interrogation that we put the psychologist through, he would later become a friend, and the person to teach us how to advocate for our son.

The year following Mowgli's diagnosis was filled with appointments with therapists, teachers, and psychologists. We had our first ever IEP meeting, and my husband discovered his extrodinary ability to work along with the school system to get everything our son needed. My son started at a preschool for children with ASD in March of 2010. After meeting the staff at the program, all the first day of school fears washed away. I had finally met people who understood my son, the way that I did. I could tell they liked him instantly, and he liked them. The pressure of caring for him all day, every day, was being lifted. These were people who truly cared about kids like my Mowgli, and they didn't even flinch at his strange behaviors, or at our "helicopter parenting". They "got it".

While Mowgli was at school, I was finally able to spend one on one time with my daughter, and able to relish in her emerging personality. I was also able to finally examine my feelings about Mowgli's diagnosis, and begin the long grieving process.

Part 3 coming soon!

The diagnosis: This mom's point of view

Here is my attempt to catch you all up to where we are today with Mowgli's autism diagnosis. I feel like it's ncessary to give you a glimpse into Mowgli's past, so that you may be able to understand the process of how and when we got to the point of his diagnosis.

My pregnancy and delivery of Mowgli was unremarkable. He was born mostly healthy. He had a fever when he was first born, and thus spent a couple hours being monitored in the NICU. The fever subsided quickly and he was declared in perfect health. We were able to take him home 2 days after he was born. 4 days after he was born he had to be treated with a UV light blanket (Bili blanket), because he had jaundice. He only needed the treatment for 24 hrs. and then my milk came in, and the bilirubin level declined.

The next 24 months, we joyously marked all his milestones on a calendar and in his baby book. I knew all the early signs of autism (my 4 yr old (at the time) nephew had been diagnosed with it 2yrs earlier), and kept a watch for them. Was he smiling? Yep. Was he interacting with me? Check. Was he saying words? You bet.

His 2yr wellness check passed, and all was well. 6 months later things began to change. Although, Mowgli could name all the objects in his "First 100 Words" book, he still wasn't using sentences. He wasn't doing the seemingly constant "what's that?", that I had heard other children his age do. His energy level had always been high, but now he seemed to have no regard for his personal safety. I feared to take him outside alone, because he would bolt towards the road. I was pregnant at the time, and couldn't chase after him like before. Of course, we made excuses for his delays. "We are always anticipating his needs, that's why he doesn't speak much", "He's high energy like his mom", "We are always protecting him, that's why he doesn't fear for his safety". Out of ingnorance of the subtlties of child development, and pure denial, we made excuses. Then, our son started screaming for seemingly no reason. His once always happy demenour became increasingly agitated and brooding. I remember lying in bed crying, saying to my husband "What's happened to my little boy? Is this because I'm having another baby? I think he hates me now.". My husband reassured me that he didn't hate me (that was the hormones talking), and that he was just growing up.

Fast forward a few months later. I gave birth to my daughter, and 2 weeks later went to Mowgli's 3yr wellness check. As he ran in a circle around the examining room (and hit his head on the counter), the NP asked about his development. I remember saying "his vocab is excellent, but I'm concerned he's not conversing with us ", after a pause I quickly said "but I think I'm noticing him attempting it more often." We left the office with an appointment to come in 6 months later for a vision and hearing screening. We entered the elevator, nervously laughing at the absurd suggestion that he could be potty trained soon, and my vow that if his language didn't improve by the screening, I was going to ask for a speech evaluation. The following 6 months I compared him to every child I saw, I made excuses. A month before his screening, I sat staring at him, as he spinned and moaned. I had only ever heard that kind of moaning in mentally challenged people, I could no longer deny that something was going on.

The screening time came, he couldn't perform the tests. I mentioned to the nurse (doctor wasn't in) my concerns. She assured me that boys are slower to develop language, and scheduled another screening in a month. That screening was also unsucessful, and that's when I asked for a speech evaluation. The nurse seemed suprised, but got the script from the doctor. On our way out, the doctor stopped us and began to ask Mowgli repeatedly "what's your name?", my son didn't even look at him.

The diagnosis part 2 coming soon!

Ten things to know about autism and our family:

1. Just because my son has autism, doesn't mean he doesn't have his own personality. Not all people with autism are alike because, not all people are alike.

2. Raising a child with autism is harder than raising a "neurotypical" child. It just is. If I tell you my son/I'm having a bad day, I'm not being melodramatic, trying to seek attention, or make you feel bad. I'm just telling you about my life, with all of its ups and downs.

3. It's hard for my family to attend gatherings or events. For reasons unexpressed, sometimes my son just doesn't want to go. Other times, we don't want to go because we are so tired. My son is very active, and walking, hiking, swimming, etc. for 2-3 hours at a time is exhausting. My husband or I have walked away from events, realizing we barely said "Hi" to anyone, because my son has been continuously on the move.

4. Just because I wish my son didn't have autism, doesn't mean I wish I never had my son. Honestly, if I could do it over again, I wouldn't change a thing. He is a gift from God, and I feel truly blessed to be his parent.

5. We might not always say it, but we appreciate the understanding, supportive, caring people in our lives. We appreciate the invites, calls, emails, and positive comments from family and friends. Our son's autism has introduced us to some amazing people, and it has brought the best of certain people that we've known our whole lives!

6. Our son's autism has made our marriage stronger. We work as a team, to help our son, his sister, and each other in life. Having a child with autism doesn't guarantee a divorce.

7. My son doesn't always show it, but he hears the conversations around him. He might not fully comprehend, but what you say around him will affect how he interacts with you.

8. My son doesn't understand the subtleties of body language, facial expression, or tone of voice. He does not yet know how to manipulate or be passive-aggressive. This allows him to express himself in a very pure way. This causes epic tantrums, but also very beautiful moments of affection. To be hugged by him is to feel love.

9. My son works predominantly on instinct. Therefore, he does what feels good and avoids what feels bad (hence the title of this blog). Sometimes this creates uncomfortable circumstances for others. Though autistic, and only 5 ½ years old, he nevertheless needs to be told (politely) that he is making you uncomfortable. Not mentioning it now will not benefit him in the future.

10. Don’t be uncomfortable asking us questions (preferably not in front of him – see # 7). Every autistic child is different (see #1), and therefore you can’t assume you know what’s going on. In fact, we don’t always know what’s going on, and he’s our kid. Teachers and specialists trained to the highest level don’t always have the answers. Autism is, as of today, an unsolvable riddle. Remember - to assume makes an ass of you and me.

A New Blog

For those of you that were following my old blog - thanks! I realized after a number of months off, that the original reason that I started the first blog was as a creative outlet, a way to get away from it all and speak/write about things that I didn't have to think too deeply about. That said, with each post, I also realized that what I was really doing was trying to avoid having to write about the thing that consumes my thoughts for the better part of most days - my son's autism. I say it that way because in my mind at least, my son and his condition are two separate entities, each with its own personality and identity, and each with its own place in this world. So for that, and many other reasons, Amy and I decided that we would start a blog about being parents of a child with autism, with the hope that perhaps we could help people better understand our lives, and that we might be able to help another couple out there who is just like us - just waking up everyday trying to make it work. I hope that all of you find this blog useful and that it brings us all closer together.

As for the name, Amy and I often joke that our son is like Mowgli from the Jungle Book, born into the wrong culture - where pants and underwear are required, where people don't generally introduce themselves with a personal space-violating hug, and where popsicles and chex mix aren't considered a balanced diet.

We hope you enjoy this. And here we go....