Best Friend.

Since Jacob's autism diagnosis, he has made amazing progress in several areas. However, when it comes to playing with others, Jacob still has a ways to go. He rarely interacts with other kids, including his brother and cousin, M, who is around quite often. He will play around them, and talk about them, but does not very often actually play with them. This is called solitary play, and is something that a lot of children with autism struggle with. Being his mom, this concerns me a great deal, because I obviously want him to have friends as he gets older and into grade school. Just the thought of him being lonely, or feeling like an outsider absolutely crushes me. We still have time before he will be in kindergarten, and I hope he will become better at engaging with other kids by that time.

We didn't plan on our first two children being 10 months apart, but obviously we weren't doing much to prevent it. Although in my defense, I didn't think my husband and I were going to be anywhere near each other. We were using that good old-fashioned birth control method known as the U.S. Navy.

I know that many people thought, and some probably still do think, that we're crazy for having kids so close together. I used to wonder sometimes, myself, at the timing of it all, and just figured that God has a purpose for Ryan and he was supposed to be born.

When everything happened with Jacob last year, I found myself feeling extra thankful for Ryan, and the fact that he is so close in age to Jacob. He is Jacob's built-in best friend. He absolutely adores his big brother. He constantly follows him around, and wants to be doing whatever Jacob is doing. His first question every morning is, "Where's Jacob?", and he asks me this several times during the three hours that Jacob is at preschool every day. In our car, Ryan sits in the middle seats, and Jacob is in the backseat. Ryan always turns his head around as far as he can to look behind him, and yell "Jacob! Oh, Jacob!" He loves to give Jacob hugs, and when Jacob tries to get away from him, he laughs and thinks it is a big game. I am grateful that Jacob has this built-in best friend, who will always be there, right behind him, and who will always love him. I also secretly hope that if anyone dares to be unkind to Jacob in school, that Ryan will be right there to defend his older brother. 

I don't feel uncomfortable anymore when people ask me how far apart they are in age. Regardless of what anyone thinks, I know that Ryan was destined to be born, he was part of God's plan. He knew that Jacob would need a buddy to stick by him, through the good and bad times. I still hope and pray that Jacob will improve at his social skills, and that as he gets older, he will have more friends than he can count.

But I feel comfort in knowing that Ryan will always be there for him.

Binker Turns 4!

Four years ago, I became a mommy. My beautiful, brown-eyed boy, with that head full of soft, dark hair, came into my life at 4:07am on Thursday, April 24, 2008. He was sweet, and cuddly, and perfect. I had absolutely no idea what I was doing as a mom, but we figured it out together. He has been such a fun boy, and has brought me so many joys and lots of laughter. 

His diagnosis of autism has brought some challenges, and a bit of heartache, but he is still my beautiful boy, with that twinkle in his eye. And I love that he is teaching me to see the world a little differently.

He had an awesome fourth birthday. He was so excited from the moment he woke up, and the day was filled with fun and celebration. He even got a birthday crown, sticker, treats, and was sung to at preschool. After school, we had a birthday lunch, birthday cake, presents, piñata, and then play time at Chuck E. Cheese. Here are some photos from the fun day.

My big four year old

Gluten free/dairy free birthday cake, amazing right?!

Piñata!

Bug, Binker, and Boo

Yummy, cake!

Opening his birthday present from cousin, MJ 

Mama with her sweet boy

Chuck E. Cheese!

For fun, I went back and looked through birthday photos from previous years of Binker. One interesting thing I noticed was that on his second and third birthday I really didn't have any photos of him smiling or even looking at the camera, this year I had a ton. It just reminded me of how much progress he has made. Love my big boy, and can't wait to see what this year brings for him!

This is how I'm feeling tonight.

When your child is born, you can't help but have all kinds of dreams and wishes for them. You wonder things like, will your child be into sports or music? What college will he go to? What will his wife be like?

After autism becomes a part of your life, those questions change drastically.

Forget college, will my child even be able to be in a mainstream classroom? Will he be able to make friends? Will he ever get married?

I took Binker to a birthday party today for a little boy in his class. This boy has not been diagnosed with autism yet, but it seems a lot of the signs are there, and his parents are suspecting it. He and Binker seemed to have a lot of similar characteristics. I can't stop thinking about that little boy, or his family, or my Binker. I can't stop thinking about all of the children and families affected by autism.

When I was young I wasn't allowed to use the phrase "It's not fair". My parents taught me early on that life isn't fair, and I don't care for that saying even now as an adult. But tonight, that's the only thing that keeps going through my mind.

Life isn't fair. Autism isn't fair.

These beautiful children are born into this world, and they deserve every chance and opportunity as anyone else. Yet this disorder interrupts their lives; changes everything. Why? WHY? What is causing this epidemic? 

I feel like so many wonderful things are tainted for me now. Tonight as I sat at our kitchen table having a conversation with Bug, I was enjoying the things that he had to say, and thinking how fun it is that each day I am able to really talk with him more and more. And then this thought crept into my mind: How much would I be able to talk with Binker, if he weren't on the spectrum? What kinds of things would he want to talk about? What interests would he have, and what things would he have to say about the world?

And sometimes when I am playing with Boo, and enjoying his easy smile, I can't help but think back. Did Binker smile this much? Were there signs this early on that I missed? Why didn't I notice something before last year? I kick myself all the time for not getting him into services sooner; if only I'd known.

Earlier this week I was celebrating Binker's progress in speech therapy; it's true, he has come miles from where he was a year ago, and I hope and pray his speed of progress will continue. But tonight I am sad, and just trying so hard to understand why all of these sweet, wonderful children must struggle with ASD. It just isn't fair.

Something to Celebrate

Binker has been feverish and lethargic all week. He just wasn't getting any better, so last night my mom and I took him to the walk-in clinic in town. I can't even begin to tell you how much I hate taking Binker to the doctor's office; I try to avoid it at ALL costs. 

When you have a child with autism, you quickly learn the places and situations that can be upsetting for them, whether it causes anxiety, or, for some, can cause a sensory overload. Thankfully, Binker doesn't have a lot of sensory issues, and things such as trips to the grocery store, or loud, crowded, brightly-lit places are a non-issue for him. However, Binker has the most amazing memory, and when he has a bad experience someplace, he never forgets. This can pose a problem when we have to make repeat trips back to said place.

And, the doctor's office happens to be a place that causes major anxiety for him.

I blame his former pediatrician. Binker was never comfortable being poked and prodded, especially when sick, and I found the doctor to be impatient and irritated, he just didn't seem best suited as a pediatrician. Kids pick up on those kinds of things, too. They can tell when someone isn't being kind or patient with them. Worst of all, this doctor made Binker's ears bleed on two SEPARATE visits, while poking in his ears. Seriously? Maybe someone needs to go back to medical school. I just don't see how you repeatedly do this, and then still get mad when your patient (who is a toddler), starts screaming. So, after those visits, Binker, with good reason, was pretty much over the whole doctor thing.

The last straw for me was when this doctor first brought up the subject of autism with us, by holding up a questionnaire I had filled out about our son, and he had written a huge "FAIL" at the top in purple marker. I felt he showed no empathy or compassion. And I was done.

At the suggestion of a friend of mine, we changed to Dr. B, who is nearly an hour south of where we live. She has been an MD for about 25 years, but she took a decade off to study naturopathy. This makes her special, because she believes that dietary changes and supplements can have a positive effect on autism - which makes her incredibly rare among doctors today. Many doctors think parents who put their kids on the "autism diet" are literally crazy; our former pediatrician was of this thought process as well, (another reason I was happy to be rid of him). During Binker's first appointment with Dr. B she allotted us double the time of a normal appointment, without me even asking for it. She was incredibly kind and gentle with Binker. She was very understanding with me as a parent dealing with autism, and she answered all of my questions, and gave me suggestions of things we could do that had worked positively in some other children with autism. 

After sticking to a special diet and adding in supplements for four months, we went back for a check up with Dr. B. I was excited to tell her about how well Binker was doing, and all of the positive changes I had seen in him. She was thrilled for our family, and, best of all, Binker did awesome at the appointment. He sat patiently in his chair, let the doctor listen to his heart and lungs and look in his ears, and he even smiled for her a few times. It was clear that the doctor's office was no longer a frightening, anxiety-inducing place for him. In fact, for an entire week after that appointment, Binker kept saying, "I like Dr. B!" 

Nowadays, taking him to the doctor is nowhere near as overwhelming as it used to be. Binker even gets upset when I take Bug or Boo to the doctor and he doesn't get to go! 

So back to this week. I knew something was wrong when I couldn't get Binker's fever to subside, so we took him to the walk in clinic last night. I was a little nervous because he wasn't going to be seeing Dr. B, and, the walk in clinic we went to is where his old pediatrician works, so I was afraid, with his memory, that he might think he was going to see the old guy.

To my surprise, Binker waited patently in the waiting room, looking at the fish tank and just walking around checking things out. When it was our turn, he got a little anxious, but I gave him a musical toy to play with in the exam room, and that was a great distraction. When the on-call doctor came in, I almost prefaced the appointment by telling her he has autism, but I decided to keep my mouth shut, and just see how things went. I figured that if Binker wasn't cooperative with her then I could explain why. 

I didn't need to.

Binker let her listen to his chest, and look in his ears (and diagnose his ear infection), without much problem at all. Afterward she let him pick out a sticker, he chose a green dinosaur. I felt elated as we walked out of the doctor's office. This is a huge step for him, just one of many that he has made. He has come such a long way in overcoming his doctor anxiety, and I am so proud of him. 

It's Confirmed

On Tuesday of this week we returned to Seattle Children's Autism Center to meet with a neurologist. He went over the report that was done on Jacob last month, then asked me some more questions. After that, he spoke with Binker for maybe fifteen minutes, having him point to different parts of his body, and give him a high five. Then he tried to get Binker to complete phrases. For example, the neurologist would say, "If fire is hot, then ice is ___", and he would wait for Binker to answer. That was the only part of the interaction that our son really struggled with.

Then the doctor addressed me again. "So today's appointment is the confirmation of diagnosis, and that's what we're doing here. It's confirmed."

And there it was. Two simple words. 

13 months of worrying, and wondering, all led up to that moment. It was surprisingly anticlimactic.

Just as surprisingly, I took it well. Maybe because it was what we had been assuming for so long, so in a way, it was just nice to finally know, for sure. Now, we can truly move forward. The good news is that we're already on the right path, getting Binker the services and therapies he needs. The neurologist said he doesn't believe that Binker requires occupational therapy, but he said we may want to do it, just so that he has yet another opportunity to engage with another person, since his social skills are well below where they should be. The doctor wants to see Binker back in six to nine months, and I feel very motivated to work with him as much as we can, so that they will hopefully be impressed by his improvement at our next appointment.

At one point I asked the doctor is he could be more specific about where Binker is on the spectrum, but he said that since our son is still young, he prefers not to do that since many kids can move up on the spectrum, and some even outgrow their diagnosis altogether.

One last thing we're going to do is have genetic testing done on Binker. The doctor told us that autism can be the result of many things, such as a brain injury, a genetic syndrome, or simply being born with it, (and there are many theories as to what causes that). During the genetic testing, a sample of Binker's blood will be taken and compared to a bunch of known syndromes in the human genome (if this isn't totally correct, I apologize. There was a lot of doctor-speak going on, and I tried my best to keep up). One benefit of this test, is that if it turns out that Binker does have some genetic syndrome, then we would know for future family planning the odds of another child being born with it (oops, too late for that), but also, we would be able to save his doctors some steps, by telling them he has XYZ Syndrome, and then they would know what to expect of Binker. Then again, it may come back that he has no syndrome at all. I have my personal beliefs of what caused his autism, but that can be a controversial subject for some, so I will keep my opinion to myself for now. Regardless, I am interested to see what the genetic test results will say. 

Oh, and apparently as part of the genetic testing, they are able to tell whether or not Husband and I are closely related. I nearly laughed out loud when the neurologist mentioned that part. I mean, how awkward would that be to find out your husband is, like, your fifth cousin? I'm not expecting any surprises like that though.

So, there it is. Binker officially has autism. And life - sometimes sorrowful, but oftentimes sweet - goes on.

Still Here

We're still here.

Life's been crazy as ever these past few weeks, and we've been dealing with a lot of changes, some awesome, some challenging, but we're here, and we're getting through it.

Next Tuesday we will go back to Children's Hospital, to hopefully get the diagnosis we've been seeking for Binker, and we can close that chapter, which I am very anxious to do. In other Binker news, he has been doing a lot more spontaneous speaking lately, which is more exciting than I can truly express. Having him say what's on his mind, and talk about things he sees, or what people are doing, or where things are - these are HUGE steps for him, and it really encourages me that he will continue to build upon this. 

Another thing I am excited about, is that I got a phone number for a hair stylist who works with special needs kids. Binker HATES haircuts. They give him major anxiety, and it is not a fun experience for anyone involved. Because of this, I stopped taking him to actual barber shops a long time ago, and have been giving him haircuts myself. To my great disappointment, I have no natural haircutting skills, and last night was probably my worst one ever. Binker has a bald spot on one part of his head. I sent him to preschool today wearing a hat, along with a note to his teacher asking if she knew anyone who might be able to help me, and to my great joy she did! Now we have a name and phone number, and I am so thrilled I will never be forced to butcher my son's hair again.

Today is an exciting day for our whole family, as Husband will be returning home after five weeks away at school for his new job in the Navy. We have missed him so much, and are beyond happy to have him return to us. I am so proud of all of his hard work, and all that he has accomplished. It has not been easy with him being gone. I am reminded, more than ever, that he is my rock, and my best friend. I am so ready to have him home again.

Bug is talking so much now. It is really fun to have "conversations" with him. I love knowing what's going on in that sweet little head of his. At the same time, it can be bittersweet, because I see how much Bug is talking, and can't help but wonder how much more Binker would be talking, since he is older. But I know there is no use in dwelling on that, so I try not to. I know that Binker is doing great, and he is so bright, and his brain just works differently, and that's okay.

Baby Boo is growing like crazy, and getting cuter every day. He rolled over from tummy to back a couple weeks ago, and he is thisclose to rolling from back to tummy. He keeps trying to sit up on his own, and in only a couple weeks we can begin giving him solid food! Time is just going way too fast with my sweet little babe.

All in all, we are doing great and are staying busy. Hopefully in the weeks to come I will find more time to sit down and write more detailed blogs, but this is it for now. Happy Friday!

Groundbreaking Moments

When we got Binker into speech therapy, he quickly picked up on requesting items. At first, it was very simple two-word phrases, such as "Milk please", or "More please". Those eventually extended into longer phrases, like, "I want milk please", etc. Around that time, Binker learned to express when he liked something. For example, on Easter, (which also happened to be his third birthday), he ate quite a bit of candy soon after waking up and finding his Easter basket, and he said, "I like Easter! I like birthday!" and this past fall, we took a family trip to Great Wolf Lodge, and after only a couple hours there, Binker was all, "I like swimming! I like slides! I like Great Wolf Lodge!"  

His speech somewhat plateaued at this point; excelling at requesting things and letting us know when he liked something, but not much more. Every once in awhile he would say something, simply as commentary, like when I would be feeding the baby, he might come over and say, "Baby is drinking a bottle!", and of course, the ever popular, "The light is on!"

In just the past couple of months though, I have seen some expansion in his speech skills. Where he used to positively melt down when he got frustrated or upset, now he consistently will say "Help me please!", and more and more often, he will even say what is wrong, or what it is he wants.

A new development in his language recently has been in his ability to ask questions and answer them. He never used to answer questions, I mean, it just didn't happen. And then, ever so slowly, he started. I'd still say that the majority of the time, you won't get an answer, but the fact that he can and occasionally does answer, is HUGE. A few nights ago I posted on Facebook an interaction I had with him. Binker came into the room holding a toy train, and I asked, "What did you find", (totally not expecting an answer), and he responded, "I found a train!"

Parents of typically-developed children will probably read over that interaction without a second thought, but for us - for Binker - it was an enormous accomplishment for several reasons. First of all, he was aware of me, and that I was talking to him. Then there is the fact that he answered me, and by turning my question into an response clearly shows that he understood what I was asking him. Also, he used "I" instead of saying his first name, which is something we have been really working on with him, trying to get him to consistently say I or me, versus his name. And lastly, he used a past tense verb when he said "found". I don't think I have ever heard him use past tense before that evening. For months I have been trying to get him to be able to tell me about past events, such as what he does at preschool. Seeing him use past tense, shows me that, through baby steps, he can master the past tense, and one day he will be able to talk to me about things he has done.

Just as exciting as answering questions, is the fact that Binker has started purposefully asking questions too. The other day, Binker was playing with a small basket. At one point I took it away from him, but I didn't know he had put some orange slices in it. He began crying, "Oranges! Oranges!" I had no idea what he was talking about, and then he said, "What happened to the oranges?" He literally stopped me in my tracks. His question was so clear, and purposeful, it took me a few seconds to respond to him, it truly caught me off guard - in a good way!

Also, Binker has really been into playing with these remote-control toys he got for Christmas from my in-laws, one is a school bus and one is a train, they are adorable toys, and he has so much fun with them. He is really good at misplacing his things though, and he usually can't remember where the remote controls for the toys are.  One morning he was looking for them, and he said, "Where is button?" At first I didn't know what he was talking about, but once I figured it out, I told him they were called remotes. The next day, he lost one of them again, and he came to me and said, "Where did remote go?"

So awesome.

This morning, out of the blue, Binker began doing something else, that, to anyone else probably wouldn't even register on their radar: he started addressing me by "Mommy". He has pointed to me before, and said "Mommy", acknowledging that he knows who I am, and he has used the word mommy when talking about me, but he never says, "Hi mommy", or uses mommy when talking to me. 

I cannot tell you how many times I have physically ached, wishing he would call me mommy.

And then, it happened. I had put him in the bathroom to go potty, and went to check on the baby, when I heard, "Mommy! Mommy, where are you?" For a second I was totally caught off guard. 

When you go nearly four years with your child never addressing you as mommy, it is a real shock when it just suddenly happens. And then it happened again. And again! I kept trying to go into the bathroom to do my hair, but each time, Binker would call for me, "Mommy! Mommy!" And then he would come in, grab me by the hand and take me out to the family room with him. One time he even said, "Sit in chair"(!). He was watching The Wiggles, and I think he was wanting me to watch it with him. So sweet!

Lately I feel like it's been a bit of a tug of war game. He will have moments where he gets very frustrated, and won't communicate well, and then I get frustrated and just want to go eat a box of Oreos. 

But, he has also been having these awesome, awesome moments - asking questions, answering questions, and then, calling me mommy. I'm still swooning over that fact. I hope that as the weeks go on, we will have more of these groundbreaking moments for him, and less of the emotional eating-inducing ones. 

It's much better for my waistline.

Making it Official, Part II

I've been trying to figure out how I feel about our appointment last week. Honestly, it was a little harder for me than I expected, even though I went in knowing that it wouldn't be very enjoyable. It was sort of like reopening a wound; I felt as though we were back where we were a year ago, having to explain Binker's symptoms and behaviors to a medical specialist. And it didn't help that the guy was going off the paperwork Binker's doctor sent to him....nine months ago. 

Obviously much has changed in the interim, and I had to spend a lot of time catching the guy up, and trying to explain the progress our son has made. I'm not entirely sure he totally grasped what I was telling him though, because at the end of the appointment he actually suggested we try teaching Binker alternative forms of communication such as Sign Language and having him use pictures to tell us what he wants. I bit my tongue, but I wanted to tell him that our son is way beyond that.

Unfortunately, between being in a new environment, and all of the distractions, Binker wasn't at his best. Kids never perform when you want them to. But I know what my son is capable of, more than anyone. While his communication skills can be hit or miss in new environments, when he is at home, he consistently uses words to communicate with me. Whether he wants something, he hurt himself, he is frustrated, or he is just sharing something with me, he uses his words. So the fact that this nurse suggested we use Sign Language made me feel like he hadn't even been listening to a thing I had said; it was like he was stuck on where Binker was a year ago.

So after two hours of him asking me a million questions, and trying to play with Binker for about 10 minutes, he told me that in his opinion he thinks Binker is on the spectrum, however, he wants to leave the official "Yes" diagnosis to an actual MD. So that will be another six to nine weeks, (he guessed), before we get in for that appointment. I can't imagine what else they will do at that appointment that hasn't already been done. I'm a little irritated that we will have to drive over an hour to have a doctor say he is for sure on the spectrum. At this point, it seems like it's just a formality to me, and kind of makes me want to roll my eyes. But we'll do it, and hopefully soon enough we will be done with these appointments.

If I sound a little down, it's because I am. I guess I just felt kind of discouraged after the appointment. I didn't learn anything new from it, or take much away from it that was positive. One thing I have found is that overwhelmingly, the medical professionals we have encountered on this journey are not very positive on the subject of Autism. Maybe they just want to keep parents' expectations realistic, or maybe they just become numb after seeing so many cases, (the Autism Speaks website states that 1 in 110 children will be diagnosed on the spectrum, and as many as 1 in 70 boys). Either way, it can sometimes be hard to remain positive and encouraged. The evening after Binker's appointment last week, I was in a very bummed out mood.

At one point, I found myself wondering what it would be like if Binker wasn't on the spectrum. I couldn't help but wonder what it would be like to have him come home from preschool, run up to me, give me a big hug and say "I love you mommy!", and tell me all about his day. Yes, I was feeling sorry for myself.

And then, as I sat there on the couch, lost in my own pity party, Binker came over to me with a smile on his face. He leaned his head on me, and cuddled up against me for a moment before saying, "Mommy loves me".

Mommy loves me.

My reality may not be what I always imagined it would be, but it is wonderful in so many ways. And I couldn't help but feel that that moment was God's way of showing me that I am still so blessed, and to, well, snap out of it. 

We'll finish this part of our journey, we'll go through the doctors' process, even though I may not fully understand it. And regardless of what they think my son's abilities and limitations are, I will keep believing in him. And, of course, loving him.

Making it Official

Over the course of this past year, we have been operating under the assumption that Binker has autism. All of the signs and symptoms are there, and it seems to be the general consensus of two pediatricians, his speech therapist, the school's child psychologist, as well as Binker's preschool teachers. The reason we don't have an official diagnosis yet is because the process of getting one is a little more involved than just one appointment with your child's regular practitioner, it usually requires multiple appointments with specialists in the topic.

Last April, Binker's pediatrician referred us to the Autism Center at Seattle Children's Hospital. We were told it would be about a six month wait before we could expect to get an appointment. September rolled around, and then October. No phone call. November and December passed, and I honestly assumed the hospital had forgotten about us. 

I really wasn't concerned. In fact, I really didn't care. From what I'd been told, getting a diagnosis with them would be just that - a diagnosis. A label. They probably wouldn't offer us any new services, they would simply tell us what we already knew, and send us on our way.

And then, last week, they called me.

Nine months after I initially contacted them, we finally have an appointment for this Wednesday.

I decided to go ahead with it for a few reasons. I know that at some point down the line we will probably need proof of his condition to continue receiving his private services through our health insurance. Also, it will be important to show the military, so that we can ensure our family will never be transferred out of the country, so that Binker always has access to the best therapies and schools. I didn't feel like turning down this appointment, only to have to wait another nine months later on down the road.

I have mixed feelings about the appointment this week. On one hand, I am anxious. I would love to go there, and have them say Binker is developing typically and that they have no concerns whatsoever that he is on the spectrum. I know that won't happen. 

So, I am preparing myself to be told the obvious. And in that way, I am looking forward to what they have to say. I know it may be several appointments before they are able to tell us anything substantive, but when they do, I am looking at it as being more information we will have about our son, and how we can work with him and help him. Hopefully they will tell us we are on the right path, and perhaps they will have suggestions of additional things we can do.

Either way, it should be interesting to see how this all plays out, and exactly what the evaluation and diagnosing process involves. I'm sure this will be an interesting part of our journey, stay tuned.

See Ya Later Alligator

A cute video I shot of Binker today. Sorry it's so dark, the boys don't have a light in their room right now.

Figuring it Out

I pulled into the parking spot, and that's when I saw her. A woman standing behind a table with the words Autism Awareness on a large sign. She was collecting donations for the cause.

I could feel my heart beating faster. In the past, I would have had no problem giving a quick, polite smile and hurrying into the store, or simply avoiding eye contact like I do with the Girl Scouts every year when it's cookie season time. But something inside me said I couldn't ignore her, as all of the other patrons appeared to be doing. I knew I had to go talk to her.

I approached her table, and she started softly rattling off her memorized lines that she had probably said to a dozen people that evening, without any response. 

When she finished, I smiled and said, "My son has autism". I could hear my voice shaking as the words came out. I forced myself to take a deep breath, to steady myself.

I have literally said those words a handful of times. And definitely never to a stranger. I think those words every day; I live them. Still, they sounded foreign coming out of my mouth, stopping me in my tracks.

The woman's eyes brightened a bit. She handed me a pamphlet on autism, and asked if I had read it. I told her no, and took it, although I knew what it would say. I've read dozens of pamphlets and internet articles on autism; I would be surprised to learn something new at this point. I spotted a donation box filled with some dollar bills, and I told her I would see if I could get some cash while in the store.

Even though I finally opened up about Binker's diagnosis on my blog here, I know that I still keep a lot of it internalized. I don't walk around with a sign on me that reads, "I have a child with autism". To most, I smile and say everything is great, and, honestly, as I wrote about, things are very good. The progress he made this past year is amazing, and I know he will continue to do so, but there are difficult days - when he is overly tired, when he gets frustrated at a toy, or scared in the night but is unable to explain why - and then everything just melts down. During those times, I feel like I am walking on egg shells around my child. Trying so hard to stay one step ahead of him - trying to anticipate what he will want - so that he doesn't get even more upset. 

I feel uncomfortable when we're out in public and strangers will try to talk to him. They ask him questions, like how old he is, how many siblings he has, is he excited about the new baby, what's his name. They always look a bit perplexed when Binker doesn't answer, or he repeats the question they just asked, or he answers by saying something like, "The light is on!" While looking at the ceiling lights. I always try to answer for him, or make some excuse about him being shy.  

On one hand, it would be so easy to just tell everyone we come in contact with up front that Binker has autism, but on the other hand, I don't want that to be the first thing people know about him.

We left Binker's first pediatrician, who initially got us on this path, because I did not appreciate his bed side manner with Jacob, or the way in which he handled the situation as a whole, but there was one thing he told us that I have tried to keep as my mantra this past year. When we were in his office, and we knew we would have to wait to get in to see the speech therapist, and any specialists, I felt so helpless. There is nothing worse than wanting to help your child, and not being able to take immediate action. I asked the doctor what we should do in the meantime. His answer: Treat him like a typical kid, just as you would if he didn't have autism. 

I have done my best to treat him the same as I treat his brothers. Obviously there are times when I cut him some slack, when I don't think he fully understands what it is we're telling him, or asking of him, but for the most part, he is treated just like any typical three year old boy. That's how I see him, too. To me, he is my sweet, funny, bright, lovable firstborn son. Who just happens to have autism.

It was nice to be able to open up to that woman at the store, almost cathartic in a way. But at the end of the day, I want the world to see Binker the way I see him. Just wonderful and awesome, the way God made him. 

I guess I'm still figuring this all out as we go.

Living on the Spectrum

Sitting in the pediatrician's office that evening I felt sick. My stomach was in knots, my throat dry. I knew that tears were not far away, but I did my best to appear strong and composed, as though I had it together. I wanted to make sure I asked questions, and listened - really listened - to the doctor's answers. 

I couldn't stop staring at the piece of paper he held in front of us as he explained the situation we were facing. He said there were several red flags, based on the questionnaire I had filled out about our eldest son.

Loss of speech.

Poor eye contact.

Toe walking.

Jumping. Hand flapping.

No imaginary play. Solitary play.

The doctor refused to make a diagnosis then and there, but in his opinion, Jacob appeared to be exhibiting signs of autism.

Autism.

It was like the world came out from under me. Driving home that night, Husband and I didn't say much. We had so many thoughts and emotions we were trying to process. This had all happened so suddenly. Only a month before, we thought we had a typically-developing two year old, who was picking up new words every day. Then in mid-January we noticed he wasn't talking anymore. At all. In fact, our middle son, 10 months younger than Jacob, was talking more than he was. We knew something wasn't right.

It's been a busy and involved road since that night in the pediatrician's office almost a year ago: Speech therapy, occupational therapy, restrictive diet, dietary supplements, special ed preschool that focuses on speech delays. Lots of prayer.

It's taken me this long to feel ready to talk about it. Until now, I've only shared this part of our lives with a select few. My biggest concern has been that people will treat Jacob differently, or label him. I have said from the beginning, no matter what, autism may be something he has, but it will not be who he is. 

Now though, now that I have some perspective, I am excited to write about our journey. I won't lie. In the beginning, before the therapies started, before I really educated myself about the autism spectrum, I had a lot of fears. There were many days when I literally collapsed onto the floor crying, completely unsure of what my son's future looked like, now that autism was most likely a part of it.

We believe Jacob has what is known as regressive autism, meaning that for approximately the first 2 years, 8 months of his life, he was developing typically, there was no reason for us to be concerned. And then, without warning, he began regressing: losing language, not making eye contact with us, or responding to us; disappearing into his own "world". He began jumping a lot and flapping his hands, also known as "stimming". He would carry out repetitive actions.

This past year though, Jacob has made amazing progress. He went from not using any words, to regularly speaking in four-word sentences. He is beginning to ask "W" questions. He uses imaginary play on a daily basis. He can make choices when given options. His eye contact is stellar, and he often engages with other people. He is awesome at following directions. He knows the entire alphabet - recognizes each letter, knows the sound each letter makes, and can tell you a word that starts with each letter. He can count to 30, and I have lost track of the number of songs he knows by heart.

To someone else, these may all seem very simple, but watching my son learn and master these skills has been amazing for our family. I have watched him struggle so many times; frustrated when he doesn't have the words to express what he is feeling or thinking. So with each new step and task learned, I consider it one more crack in the process of breaking into his world. 

Our focus will remain what it has been this year. Keep pushing Jacob, keep supporting him, keep getting him the services and assistance he needs to continue building on the skills he has learned, and continue expanding his speech. Our ultimate goal at this time, is to have him in a regular classroom by the time he starts kindergarten. I believe he can do it, and we are committed to making it happen.

From now on, I will occasionally be sharing parts of our journey and experiences we have while going through this. I can't wait to see where Jacob will be 6-, 12-, 18-months down the line. I know he will only get better and better.

That January night, sitting across from the pediatrician, the last word that would have come to my mind was Joy. And even though we definitely have struggles and hard days, I have to say that seeing my son learn so much has brought me immense joy. Every little accomplishment is a reason to celebrate. I have also learned that some of my favorite parts of Jacob's personality are probably related to his autism; he wouldn't be the same boy he is without. And I wouldn't change him for anything.