Until I became a mom I never realized the strong bond that we have with our children. One of the first things I noticed as a new mom was how easy it was to pick up on Jake's body signals and unspoken cues.

From the time Jake could sit up my internal gut feeling told me that something was a little different about him. Jake was a very alert and happy baby but wow did he love to rock. By the time he was able to sit up unattended he was rocking so hard that his head was bouncing off of his knees and as he flipped back his head would bounce off the back of the couch.

Rocking was a non stop thing in our house, whether he was on the floor, couch, bouncy seat or car seat! My mom and I use to laugh and say, "Jake looks like he is going to take off into outer space". This was just Jake. Now that is a term she and I had used a lot and as the years went on, we found that many things that were "just Jake" were also things that began to stand out as maybe something more than an active toddler. Little did we know these were small pieces of a much larger puzzle.

Jake made goofy "vrrr vrrr" noises and flapped his hands much of the time. I would watch him throughout the day while he did this to different objects and toys around the house. Each time it ended the same way, with him staring at an object with such intensity that you would think he was gazing upon the face of God himself, while flapping hard enough I thought he was going to have lift off! More puzzle pieces.

April 2003

Once Jake began talking there was no stopping him. He now could verbalize to us everything that was going on in that head of his and he was quite impressive. By age 2 he was reading words. He loved to read the signs along the highway. At first I thought it was a fluke, then I realized he truly was reading. It was cute to hear him read a word like "Fireworks" while driving 65 mph down an interstate!

I give my mom credit for that. She was his daycare provider while Jake's dad and I were at work. She played a huge part in not only caring for him but in taking the time each day to teach and foster the many talents this little guy had. In my opinion, she was the single most important element in his early development. Not to take anything away from his dad and I, but she spent the majority of the day with him and saw something amazing in him, something different that needed to be recognized. She also realized rather early on that Jake learned new material very rapidly and had a photographic memory - he put me to shame most days.

At his 2 year check up I mentioned to the doctor some of the concerns I had about Jake. I told him about the rocking, noises, hand flapping and the trance like state he went into at times. I made it clear how this was part of his normal daily routine. The doctor told me Jake was a normal 2 year old who had exceptional intelligence.

April 2004

At age 3 he was reading full books and his appetite for reading could not be satisfied. It was amazing to listen to him read and listen to him explain things in detail, the way an adult would. I was living with a 3 year old who spoke and thought like an adult, yet he had some monstrous meltdowns. More puzzle pieces I would later find out.

This was the time when his obsession with Thomas the Tank Engine began. Jake's rocking really took off when he was watching Thomas on TV. Then one day I noticed that he was lying on the floor lining up the trains. The thing is, he was not just putting them in order, he was visually measuring the distance between the trains, with one eye closed and with the most intense concentration. I just sat and watched him a while. Soon the trains were lined up, perfectly spaced from one end of the house to the other.

Within a few weeks everything in the house was lined up, anything he could get his hands on. This constant lining up of objects continued as the hand/arm flapping became more frequent. He would flap and make the "vrrr vrrr" noises more often and with more intensity now. I kept notes to bring up at his next doctor visit. The puzzle pieces just kept piling up.

About this time I took advantage of an amazing program called, "Parents as Teachers". The teachers would come into the home and evaluate how the parents were with the child. Our Teacher was Kathy M. and she immediately saw everything I had been seeing for the past few years. She pointed out to me the rocking, flapping, intensity etc and someone else besides my mom independently noticed this. I was so happy, but now the reality of this was starting to sink in. There was something going on with Jake. Kathy spent almost a year with Jake. Her initial feelings were that he had some form of Autism. She was convinced he was on the spectrum and it should be monitored. HUGE pices of this puzzle.

At Jake's 3rd year check up, armed with the new findings from Kathy and Jake's increased odd behavior I was ready. I brought up Autism and explained to him that a teacher had noticed this behavior and was concerned. Once again I was met with huge resistance. The doctor told me, in no uncertain terms that he was not Autistic. His exact words were, "Jake is too social, he is a very active 3 year old. He is the Little Professor mixed with Robin Williams" So that was that. I tucked it away in the back of my brain and continued to observe him, very closely.

Around this time the temper tantrums began to get worse. One day in particular really concerned my mom and I. We had taken him to a local resale shop. They would put out their gently used items in the parking lot and it was like a kid's wonderland. So we stopped in and let Jake look around and see if he liked any of the outside toys. After about half an hour we were done and had not found anything. So upon telling him we were leaving, he began to throw a huge tantrum.

I was shocked because I had never seen anything like this with Jake. He was thrashing about while kicking and screaming at the top of his lungs. Finally mom and I were able to get him strapped in the car seat and we were both standing by the door of the mini van trying to calm him down. He kept screaming and suddenly he started violently hitting his head on the back of the car seat as hard as he could. At this point I was sure an Alien force had taken over my child because this was something I had never in my life experienced. My mom was equally in shock. When the tantrum was finally over, he was physically and emotionally exhausted and mom and I were in total shock. That was not normal and we did not know how to process what just happened.

A month or so later my mom took Jake to the local library to get some books and videos. He was a complete angel until they got out in the parking lot and once again the demon ears sprung out. He did the exact same thing to her, only this time she was alone while struggling to almost drag this this child to the car, all the while with him kicking and screaming. So from that point on, mom did not take him out alone.

January 2005

Jake was age 3 & had just started pre-preschool. He really loved going. Nothing significant was observed during school other than that he was very social, curious and intelligent. He became very interested in Dinosaurs and continued his obsession with trains.

April 2005

Jake turned 4 and continued with the pre - preschool until June of 2005. He began playing soccer. (although I don't know if you could actually call it soccer they were playing! He had fun so that's all that mattered!)

August 2005

Doctor visit again and once again the topic of Autism was brought up by me and once again I was shot down. I believe this time his exact words were "Jake is a little hyper and high strung and he may be a little ADHD but lets no do anything until it becomes a problem in school" That was the first time his doctor mentioned ADHD, so it made me more curious. Again puzzle pieces.

Fall 2005

This was a very structured time for him and he was like every other kindergartener trying to figure his way through things. We heard praises about how intelligent he was. This was the first time a teacher had said that Jake's I.Q. was "off the charts". I can still see the way her hand flew up in the air while she said it, as if to drive home just how high off the charts she felt it was. It was something we always felt, but this was confirmation and it felt good. Jake was becoming more socially out there. He was so excited to meet new people and to talk to them. The only problem is that he would go on and on and on about the same topics. Again, nothing alarming but another piece of the puzzle. These were topics that he held an interest in, such as dinosaurs, thomas the tank engine.

Jake played well with others however he preferred to play alone. I thought it was due to him being an only child and I thought in time it would work itself out. All of his oddities continued, but now they were just such a part of him that I honestly did not even notice them as much as I once had.

Jake was still in soccer and really was not cut out for sports. He really had no coordination and it was almost painful to watch him try to participate. Add another puzzle piece.

Jake finally found his calling, he loved performing. He stole the show in the 2005 Christmas musical and we heard many voices from the audience saying he was the next Jim Carrey and things of that sort. He was not bashful and was quite confident in front of a large crowd.

Age 5 2006

Jake turned 5 in April of 2006 and shortly after his dad and I separated. Jake spent the majority of that summer with my mom and I. Jake was his normal self for the most part and all of the things that I told the Doctor year after year, were brought up once again at his yearly visit. As usual the answer was the same. It was my duty as a parent to report these things, so I made it my yearly duty to do so.

August 2006

In the fall of 2006 Jake and I moved to San Diego and he started Kindergarten. He was attending all day classes and loved it. At the parent teacher conference she mentioned some of his rocking and how at times it seemed like he was not paying attention. She thought he was bored because he was a few years a head of most of the other students in terms of what he knew. His grades were all A's and so she knew he was learning, although he was zoned out. One more piece of the puzzle. That year he won an academic award and became very involved in Karate. He really did well in Karate and overall had an amazing experience at Hillcreek Elementary.

April 2007

We returned to Indiana and Jake continued in Kindergarten, at a new school. He made friends easily and no complaints or issues at school were noted.

August 2007

Jake was now 6 years old and in first grade. He has suffered the loss of his Nana Annette and although it did not seem to directly impact him, I'm sure there was a lot of confusion going on under the surface. In school Jake was reading at a second grade level and he achieved a national percentile rank of 94 which meant that Jake scored greater than 94% of the students nationally in the same grade. Jake's grades were exemplary all around. Boo-yah as Jake would say!

Jake's teacher did not want him to become bored so his reading materials would be according to his level vs what the class was working on. In the latter part of 2007 my mom's health began to take a turn for the worse. She had been dx with Cancer for over a year and although Jake knew this, she had not physically begun to show it, aside from the loss of her hair. Up until her physical appearance began to change I believe Jake convinced himself she was OK, because she looked OK. His teacher indicated he was doing well in school and no complaints or issues at school were noted.

April 2008

Jake turned 7 years old. Mom missed Jake's Birthday party because she was in the hospital - it was the first birthday she had missed ever. He was doing amazing in school and had this unbelievable personality that just drew everyone in. Jake joined theater camp that summer and he just came alive! He had the male lead role and it was originally going to go to an older child, however his personality and reading skills won it for him. He not only remembered every line but he ad-libbed some things that just made the entire show even more enjoyable. Now we knew for sure what his true calling was.

One of the Camp teachers told me that "Jake is constantly in motion, he never sits still" and I thought about it and realized I'm so use to it that I dont really see it as clearly as someone outside my immediate family would. I then began watching him closer at home and the rocking was getting worse. The minute he sat down he began rocking and I would have to remind him to calm down because between the rocking, flapping and noises it was maddening at times. More puzzle pieces.

August 2008

Back to school visit. The doctor reaffirmed that Jake was probably a little ADHD and left it at that.

Jake started 2nd grade. He also continued playing Soccer, which would his final season. His attention span in soccer was getting worse and it seemed like his dad spent more time yelling at him during practices and games that it was not worth it any longer for him to play. He toughed out the season and once it was over he was done for good. At the time we thought he was just being lazy or a poor sport but in actuality I think we were witnessing the beginning of the Asperger's materializing. Huge puzzle pieces.

My mom's health was getting worse and Jake could now see the physical impacts it had upon her. For the first time ever she was not able to attend Grandparent's Day at his school, although my step father was there, her presence was missed. He would not talk much about it and I know he was internalizing a lot at this point. Stress is not good for any disease or condition and so this was having a far bigger impact upon him that he was letting on.

September 24, 2008

A month into school and his teacher asked to talk with me after class. I had that feeling of doom in my stomach. Mrs. Walters got right to the point and said "Jake is brilliant but he is always rocking, flapping his hands and zoning out. He seems so lost and I know its only a matter of time until the other kids start making fun of him"

Now most parents upon hearing that would go into defense mode or denial. I actually hugged her. FINALLY someone saw all the things I have been seeing since this child could sit up. I didn't know whether to laugh or cry but It felt like I had just won the lottery.

Mrs. Walters continued telling me that he seemed to be in his own world a lot of the time and when he zoned out he looked as if he was in a trance. More puzzle pieces. The part that she found interesting was that he retained everything she had taught during those zoned out moments. Since this was something she had noticed in the past few weeks. I was thinking it might be a reaction to my mom's worsening condition, or it might very well be the break I have been waiting for, a Teacher noticed. Only this time she noticed it all, not just an occasional oddity, but the whole kit and caboodle.

I called the Doctor's office as soon as we got home and we had an appointment scheduled the next day after school.

September 25, 2008

I was so excited to share this information with his doctor because it validated everything I have seen and told him about for all of these years. Not that I wanted anything ever to be wrong with my son, but as a mom I KNEW something was different, I not only knew it, I felt it and no one could convince me otherwise.

The Doctor listened as I told him the laundry list of things Jake had been doing in school;

-Zoning out

-Intense rocking all the time

-Hand flapping

-Unable to complete tasks

-Unable to focus

-Could not sit still

-Appears to be in a daze and seemingly unaware of his actions

Jake's Doctor asked me what I noticed aside from what the teacher said. I told him he seemed to be a bit more fidgety than normal. He was becoming noisier and was more distracted than ever. My adorable child was suddenly becoming defiant and losing his temper more often. This could be his age however given all the other issues, the Doctor wanted us to try a medication called Concerta. This was used to help improve concentration. It was a low dose and he wanted to see him in a month to see how he was doing. Jake's teacher was informed about the medication and she became my eyes and ears while Jake was at school. The official Diagnosis was ADHD, not quite what I was thinking but it was a start.

October 24, 2008

My mother passed away on this day and thus began a downward spiral for Jake. During his 7 years he had the closest bond with her that was possible. At times I questioned whether he was closer to her than to myself. (and if anyone knows how close the bond Jake and I share is - it's just hard to imagine there was a greater one.) I do believe that her death was the event that brought out the remainder of the Aspergers.

November 2008 Jake's behavior was worse than ever and his emotions were out of control. In addition to all the other issues at school, he was now retreating into his own world and crying at random times during the day. His teacher was quite concerned about the impacts this was having upon him in class. Jake saw the doctor and was put on another medication called Risperdal. This scared the heck out of me because it was an anti psychotic drug, however it was used for children with ADHD to help control emotional outbursts.

January 20, 2009

Jake had a doctor appointment. Jake was having good and bad days at school but for the most part things seemed to be the same, thankfully not getting worse. We were still being told it was ADHD, however in my heart I knew it was more.

March 16, 2009

Jake had an appointment with the doctor. Things at school had become a bit worse. I clearly remember this day like it just happened yesterday. His dad, Jake and myself were taken into the far back room and after a while the doctor came in. He spoke with Jake for a few moments, asked me some questions and then left. He came back in and handed me a piece of paper and said "look this up, research it" I opened up the paper and it said "Asperger's Syndrome". I showed it to his dad and then immediately my eyes filled with tears. You know those hot burning tears you just cant stop. I honestly think I was in a state of shock. He changed the dose of Jake's medications and wanted to see him in 3 months.

I remember walking out to the parking lot and his dad got him settled in my van. Then once alone with John, I just burst into tears. I did not want Jake to see me crying and John said to me "Don't stress out it's probably nothing" Then he got into his car and left. I stood there thinking this was the most significant thing our child had gone through and he was so casual about it.

Fast forward 20 minutes later, I'm sitting in the drive thru at Walgreens and my cell phone rings. It's Jake's dad. He googled Asperger's and was giving me more information than my brain could handle. Then I remembered that is how he always dealt with such life altering news, by distancing himself and worrying about it when he had to. He seemed a little worried now.

August 12, 2009

Back to school check up with the doctor. Medication remained the same and seemingly all was going well with him. Same behavior at home all summer long, but no worsening symptoms. I had a meeting with his new teacher and explained everything to her so she would be aware of what to expect with Jake. She was completely on board with working together and keeping the lines of communication open.

September 28, 2009

Jake had been having some rough days in school. A lot of random crying and trouble staying on task. He saw the doctor today and the Risperdal was increased. I will be honest, this really bothered me. This was a strong drug with nasty side effects, but I was willing to try and see if we noticed any changes.

October 19, 2009

I received this email from Jake's teacher today;. "Dawn, I wanted to give you an update on Jake. He had a really rough day on Friday. I was going to get in touch, but I ran out of time. He was really moving around more than I had ever seen before--not just back and forth but sort of shaking. Today he was better, but when I think about it, I think he has been slowly getting worse since the beginning of the year. It is far more difficult to focus him than it was, and he is having trouble keeping up more often than ever before. If I'm not constantly redirecting him, he seems to be not getting his work done. I know this isn't what you wanted to hear, but I figured I should keep you as informed as possible. Jake is just the most wonderful little guy, and I want him to be as successful as you do. I am really enjoying him!"

My heart sank. I called the doctor and reported this. I also expressed concerns about the dose of the Risperdal. I told them Jake's behavior seemed to have become worse since the dose was increased. The doctor's office called back and told me that they would not reduce the dose and that Jake needed to see a Psychiatrist. So at that point I was losing it. I called the Doctor they wanted Jake to see and this particular Doctor did not have one Asperger's patient, nor had they ever seen one. So I told them thank you but no thanks and I called a local Psychologist that did have much experience with Asperger's. This particular office was not in Jake's insurance network so it was going to cost me much more to take him there, but at that point I would have gone bankrupt to make sure Jake was taken care of.

At that point Jake's dad and I made a decision together that we were reducing the dose of Jake's Risperdal. I did much research on it and felt that we knew our own son better than anyone and this was the right thing to do.

November 12, 2009

Jake had his first visit with Dr. Parks, a Psychologist. It went very well and afterwards I knew this was the right choice. Jake would be able to talk about his feelings and thoughts - and he would also be taught learning tools to help him understand and handle the impacts the Asperger's has upon him.

December 15, 2009

Teacher email to me; "Dawn - I've seen some improvement in his ability to focus. He tends to have good days and not-so-good days, but compared to the day when I e-mailed concern to you, he is vastly improved."

January 15, 2010

Teacher email to me; "Dawn - Jake has had a rough week...really disorganized and unfocused. Yesterday was particularly bad. I talked to him this morning. Today has been much better all around. He has hardly rocked today at all, but yesterday and some previous days he was almost out of his seat. He was having trouble following all directions and completing tasks. Today has been much much better!"

February 4, 2010

Teacher email to me; "Dawn- He has had a rough week, he has been very unfocused with a lot of rocking."

Jake's teacher has been reading the numerous books on Asperger's that I have purchased for Jake. She asked me how I felt about him sharing his story with the class and I thought it was an excellent idea. Jake was very excited to be able to talk about this as well.

February 22, 2010 Teacher email to me; "Dawn - I read the beginning of the yellow book, and Jake and I talked to the kids about his Asperger's. The talk went really well, and Jake was really quite cute. This definitely might be something to talk to each year's teacher about doing at the beginning of the year each year. I read all of the books myself and found them very helpful. Thanks! They are on their way home today. One wonderful moment was when someone asked "What does it feel like to have Asperger's?" He said it feels like lots of different [cars (I think that was the noun)] buzzing around in my head and it is hard to focus outside of that. I thought it was amazing how you have given him the gift of words to explain what he is experiencing. Great job, Mom!"

It is now April of 2010 and for the most part things have evened out. Jake is struggling with the bullies at school and in this case it seems to be his sometimes eccentric behavior that triggers the bullying. Jake tries to take the high road but always must get in that last "lecture" and then the bullies just walk away or tell him he is not cool. That breaks my heart but if he can learn to control some of his behaviors over time then Im hopful things will eventually work themselves out. If not mamma bear is not opposed to a sit down meeting with the bullies and the principal.

I'm starting to realize that no matter how hard we try, it is impossible to not feel the pain our children experience during times like these and nothing hurts as bad as when your child is hurting.

I know this page turned out rather long but I wanted to give parents an idea of what the past 9 years have been like and hopefully someone makes a connection to this this story. If this helps one parent then it was well worth it.

Please feel free to email me anytime if you have questions, suggestions or would like for your child to meet Jake - whether in person or online.