Wednesday, February 29, 2012

Gifted? Yes!...and no

My son is gifted. And then he's not. In some areas he is off the charts smart, probably smarter than his mommy on her best day. Yet other things will probably always be a little more difficult for him.


At age three Jacob could sing the alphabet backwards without hesitation. Go ahead and try it, I'll give you a minute. Not easy is it? Also at age three he taught himself to count by 2's, 5's and 10's. On his own. Just one day he told them to me. At age three most kids are just learning to count to 5 or 10. Mine was counting well past that way before age three.

I remember when Jacob was four and we were up at our church nursery. One of the nursery teachers was going to share the story of Jonah and the Whale. The book referred to the whale as a big fish. I knew the second she said it, that it would not set well with Jacob. While the other kids quietly ate their goldfish crackers listening to the story, Jacob raised his hand to correct the teacher. "Actually a whale is not a big fish, but a mammal," he tells her. Yep, that's my boy!

Musically Jacob has many talents as well. At an early age he was able to clap out rythmes to songs. At the time I thought all kids could do that. He taught himself to play simple songs like "Row, row, row your boat" and "Twinkle, twinkle little star" on his keyboard by ear. But the coolest thing he does is similar to beat boxing. When Jacob sings, it's not just a simple song. He makes different noises with his mouth while clapping in a unique way to get different sounds. It's hard to describe. We are so used to him doing it we don't even notice any longer when we are out and he is singing. So many times we have had people make comments that they have never heard anything like it. It is pretty remarkable! Maybe all the years of playing American Idol at our house will pay off someday.

At age six Jacob does very well in school. Reading, math, and spelling come easy for my son. The one thing I have learned is that it is typical for kids with Aspergers to have a very slow work pace when it comes to school. So it may appear that he does not know the work or is struggling, when it has more to do with motor skills and processing information. Poor handwriting and organizational skills along with perfectionist tendencies make for a slower school work pace.

Ask my son about any animal and he can tell you fact after fact. Ask him about his favorite baseball team and he can share with you stats on each player. Every birthday card he makes for family and friends is loaded with math word problems for the birthday person to solve. He's always asking questions and wanting to learn. But what I wouldn't give to lay in bed and read a fiction story with my son sharing with him some of my favorite stories I got lost in as a child, yet each night is full of animal fact books, night after night after night.

Although academically Jacob does well, but there are many things he struggles with. Things that kids his age have been doing by themselves for years. Most of his struggles are with his fine motor skills. Scissors and writing are still a challenge. Dressing is a constant struggle for Jacob. Every morning he wants help with his socks because he can't get them "just right". He can't wear pants with buttons, snaps, or zips because he can't maneuver them while they are on his body. Finally this year he learned to zip his coat. I hated watching him at recess last year with his coat hanging wide open in the middle of winter. Shoelaces haven't even been addressed yet. Thankfully velcro and slip on shoes are much more stylish than in years past.

Legos, blocks, and complex puzzles are not even attempted. Just too hard for him. Every once in a while he will try, but then gets discouraged. I'm sure he sees his peers doing these things, and knows he should be able to as well. Jacob doesn't own a bike. Not for our lack of trying. He's had one before, but it was not easy. Now they no longer make bikes in his size with training wheels. Pouring drinks, cutting with a knife, or spreading with a knife are again impossible tasks for him. Juice box straws? Not without help. Candy wrappers? It doesn't matter how badly he wants it, he will struggle.

Another thing I have learned is that people with Aspergers have a hard time generalizing. If I tell Jacob it is not ok to hit a friend at schoool, he doesn't make the connection that it isn't ok to hit someone at the mall, or the playground, etc. Once I learned this about my son, it made perfect sense. All those times when I wondered why we had to keep going over the same rules regarding behavior is clear.  How many times did I tell him last year not to kiss girls at recess only to have him kiss one at lunch? He thought the "rule" only applied to recess.


It has been speculated that many famous highly intelligent people had Aspergers. There is really no way to know for sure, but this list includes, Albert Einstein, Beethoven, Thomas Jefferson, and Isaac Newton to name a few. It has also been said that Al Gore, Bill Gates, and Mark Zuckerberg creator of Facebook have it as well. If that is the case, Jacob is amongst some great company!

I know Jacob's future holds something big for him. Is he gifted? In more ways than I will probably ever know. But the biggest gift is Jacob himself.

Tuesday, February 28, 2012

How I Taught My Son to Be Mean



When Jacob was four, I bought a series of workbooks on virtues. At the time he was very interested in learning, so I thought why not go beyond ABCs and 123s. It was about that time that I realized other people's emotions were a hard concept for him. His first lesson was on kindness. He loved the animal based approach and we finished the entire book in one afternoon. What I hadn't banked on was that not only did the book show how to be kind, it also showed examples of being unkind. The idea was to have the child determine which was nice and which was not. "I like playing cars with you." Nice! "Your shoes are ugly!" Not so nice. "You are a good baseball player." Nice! You get the idea. And Jacob took his chunky orange crayon and circled the nice examples.

At age four Jacob really had no idea how to be mean intentionally. He still doesn't for the most part. Many times he will say hurtful things without even realizing it is not nice. Some of that is Aspergers, some is just the innocence of children. Lately when he doesn't get his way he tells me, "You are the meanest mommy ever!" At first it stung a little. Now the initial bite has worn off and he realizes it doesn't get much of a reaction any more. All it took was one time of me saying "I can show you mean mommy if you want," when he was upset because I wouldn't let him have a third fruit snack. "I just won't buy any fruit snacks anymore!" Nipped that in the bud!

So my goal has always been to teach Jacob kindness toward people and the world around him. A simple approach of, if you are nice, you will have friends type of mentality. With his social skills lacking, making and keeping friends would be a challenge, and the world is not always kind to those that are different. The best way to fight any impending bullying in the future was to build a strong foundation for my son. If his heart was full of kindness and love, it would make it much harder for the hurts, sadness, and anger of the world to break him down.


Pick up any Aspergers book and it is almost guaranteed you will find a section on bullying. It's no big shocker that kids with Aspergers get picked on. They're unique and quirky. They have obsessive interests that more than likely don't appeal to their peers. They have a need to control situations and others. They are not always aware of the teasing or bullying. Unfortunately all this makes them an easy target. In one report I read it said that 90% of kids with Aspergers are bullied on a daily basis. Ninety percent! Ninety percent! That is hard to stomach looking at my sweet innocent little boy. Is this really what he has to look forward to?

Jacob gives me little information about his day at school. I ask him trying not to push too hard, and he always responds with "I don't want to talk about it. End of discussion." When Jacob leaves school, he wants to leave it all behind and move on with his day and have fun. I know he has friends. I see him at recess playing soccer or basketball. And he does talk about some kids. He seems to cling to one at a time. Right now it is all about Amy. He gets giggly just talking about her. But of course I still worry. Would Jacob even be aware if someone was making fun of him? Would he notice if a classmate was teasing him? If it is happening, and even if Jacob doesn't notice, his classmates see what is going on, and then they could start thinking the same way. It's been 30 some years since I was in elementary school and I can still tell you the kids that were picked on and bullied. I knew it was wrong, but did I stand up for them. Sadly, no.

The silver lining in all this is that bullying is front and center these days. Everyone is talking about it. From parents and teachers to celebrities. Bullying is no longer accepted as a norm. It does have to stop. And I do feel that our country is moving in the right direction. But you still hear horror stories of bullying and the terrible consequences that can be associated when someone is pushed too far.

My mother always told me to "Kill them with Kindness." Honestly it is probably some of the best advice I ever received. If someone knows they are doing something or saying something and it bothers you, they will continue to do it. They've got your goat. Just like Jacob telling me I was the meanest mommy.   Once he realized it wasn't working, he stopped. I'm not saying this is the answer to all bullying. Some kids are just mean spirited and it doesn't matter, they will just be mean! And I also don't want Jacob to think he has to put up with someone picking on him. But if he learns that if his initial reaction is to simply not react, maybe it will not give the bully the power they are seeking. Hopefully by giving Jacob kindness and confidence the bullies of this world will stay far from my son.

So you are wondering how I taught my son to be mean when my goal is to teach him kindness. The day after the kindness workbook the two of us were snuggling on the sofa watching a show before his afternoon nap. The show ended and I announced it was nap time. Naturally Jacob being four protested. I turned off the TV to which Jacob said, "Your shoes are ugly!" I looked at my bare feet and just laughed.


Monday, February 27, 2012

Oh, What a Night...

The other night was one of the most highly anticipated nights for any elementary school age child, right up there with Christmas, Halloween, and Easter. The School Fun Fair!

Of course we were among the first to arrive. We've learned over the years that Jacob needs this. Walking into a room full of people can be overwhelming for anyone, for Jacob it is torture. He needs to get there early to get grounded and assume a sense of security. So I knew we would be there to get the party started, and would be closing the place down.

Thankfully my sister had volunteered to watch our baby, so the night was all about Jacob. He was thrilled! A gym full of inflatables, snacks, games, prizes, everything a little boy would want. It didn't take long for my arms to be overflowing with trinkets, lemon lime soda, and yummy desserts from the cake walk. The night was going perfectly!

That is until we found the balloon animal room. I knew the second we walked in that this was going to be a problem. There was a sign reading, "One Balloon Animal per Wrist Band." Ok...we have one child, and one wrist band. The sign next to it had a list of each of the balloons you could pick from: hearts, stars, swords, dogs, dinosaurs, and giraffes. Uh oh! I knew it wasn't going to be pretty. But Jacob has surprised me before, so I turned to him to see his reaction. Jacob apparently had read the sign as well, and looks at me and says, "But I want both." He didn't have to tell me which two he wanted. Last year his obsession had been with dinosaurs. And he has always had a thing for safari animals, so the giraffe was a given. "Jacob, it says just one." "No," he yells, "I want both!" I knew things were spiraling out of control quickly. I was alone to fight this battle as my husband had kindly volunteered himself and was working his magic in the pop toss room. At this point Jacob is sitting right in front of the doorway sobbing loudly. Looking around at the plethora of balloons I too am questioning the limit of one. I go over to Jacob and quietly try explaining the rules again desperate to help him make a decision and avoid a meltdown. We were deep in the building and carrying 70 pounds of screaming child out the front door was not going to happen. My friend happened to be near by, and told me to just talk to the lady and she would understand. I debated if it was best to let the meltdown continue or try to squash it before it got really out of control. "Just tell them," I think. "There are plenty of balloons. Tell them!" "Tell them! Tell them!" But it is not my mind saying "tell them" at this point, but Jacob. Jacob doesn't know he has Aspergers, so it is not that he is wanting me to share that info. He is wanting me to tell them that he likes both and can't decide. Is it worth the fight? Do I make my child the exception?

I've never wanted Jacob's Aspergers to be a crutch or excuse. I knew I had to make a quick decision and it had to happen now as people were beginning to look and I did not want his classmates seeing Jacob this way. I turn to the balloon lady, and I'm guessing my face said it all. She kindly said, "What is it that he wants?" And I told her he was having a hard time deciding between the two. I could have left it at that. I could have just let her think my unruly child is a little monster and always gets his way. But I couldn't. I looked at her and said, "My son has Aspergers. He isn't throwing a fit to be a brat. He just can't make a choice. Both dinosaurs and giraffes are special to him. Had one not been on the list, there wouldn't have been a problem at all." She worked swiftly to make the balloons for my son still slumped by the door, but who had stopped crying. As she handed me the balloons, I thanked her with tears in my eyes.

I found Jacob next door in the pop toss room with his dad. He had left because while the balloons were being made, one had popped and it was too loud for him. He was thrilled with his new balloon creations and couldn't wait to show daddy. Jacob hands them back to me, and gets in line for his own turn to win yet another bottle of lemon lime soda. With my over filled arms, I tuck the balloon animals into his Toy Story goodie bag and that's when I hear a "pop". Surely that isn't what I think? Please say I didn't just do that. Not after the nearly 20 minutes I spent with the balloon lady. But oh, yes, I had popped the giraffe. And of course, Jacob hadn't missed a beat. He stepped out of line and came over to examine the shrinking giraffe. Seriously? Is this really happening. Just when I think we could move on. There was no way I could go back and ask for a third animal, but I knew Jacob would not let it go. That's when my teenage neighbor girl who happened to be in the room, came to the rescue. Knowing Jacob his entire life, she too knew how important this was to him, and she headed out to find the balloon lady in hopes of a replacement giraffe for my son.

The end of the night had arrived and there was only 10 minutes left of the fun fair. Jacob was making his final rounds replaying all his favorite games, when all of a sudden a loud alarm fills the school building. The fire alarm! Every child with sensory processing disorder's nightmare.  It was loud and there were people everywhere trying to navigate to the exits in an unfamiliar building. Children were crying all around us frightened and trying to find their parents. The school staff was panicky trying to figure out if this was for real or a prank gone bad. But amongst all the chaos and confusion, there was my son. Something that years before would have sent him into utter panic running with wild abandonment, here he was now holding his hands over his ears and patiently walking toward the exit without hesitiation. He was fine with a surprising calmness about him, and I couldn't have been more proud.

On the way to pick up his baby sister, I am reflecting on the night. The lows of the balloon battle to the highs of the fire alarm. But the best part for me was seeing Jacob with his friends. From the little girl in his class who picked him to race to the top of the inflatable mountain, to the friend who practically broke his arm off from four tables away, wanting Jacob to sit by him in the lunch room while eating dinner. All in all it had been a good night. I ask Jacob what was the highlight of his night, and he says, "the balloon animals, of course." as he holds tightly to his creations. "Of course," I think with a smile on my face.

Friday, February 24, 2012

A Different World View

When you have a child with Aspergers you see the world in a totally different way. You are aware of all the little things in life that you are normally quick to dismiss. Every minute is captured. Every detail is noticed. Why? Because your child points them all out.

Jacob is an observer. He always has been. As an infant he was very content with sitting in his bouncy seat watching the world and taking it all in. Once he began talking, he pointed to everything wanting to know the names of every object, and with his incredible memory, he never forgot them. Around age 3, he was no longer satisfied with knowing the names, he now wanted to know how to spell them. I'm guessing that is how he learned to read at such a young age, because no one formally sat down and showed him how.

Not only is he an observer, he is a talker. Jacob comments on everything! Everything he sees, he either asks questions or makes a comment. Some days I just want a little silence. But most days it is refreshing to see how my son views the world.


Take the other day for example. Jacob was supposed to be getting dressed for school. I go into my bedroom to remind him for the fourth time that he should be getting dressed, only to find him standing there in his birthday suit staring at "The Cat in the Hat" on TV. I patiently remind him what it is he is supposed to be doing, and he says, "Oh yeah!" and starts getting dressed. Then he proceeds to tell me, "Mommy, did you know that I always get dressed the same way? First I put on my underwear, then my pants, then my socks, and last my shirt." So I tell him that I put my clothes on in a different order. He looks at me for the longest time and just stares, taking in what I have told him as if he had never realized there was another option. This morning I noticed he put his pants on last.

Many of his comments or questions I simply do not have the answer for. I certainly don't consider myself uneducated. It's just many of the things he asks I have never taken the time to actually think about. For instance, yesterday afternoon as we were riding in the car he asked me, "Mommy, does every bird have its own tweet, just like humans each have a different voice?" Ok...wasn't ready for that one. Jacob loves his animals, but not particularly birds, so I can't say I am well read on the subject. I started to reply and than thought better and just said, "You know, I really don't know. We'll have to find out."

Most of his questions and observations come during our quiet times together, typically in the car or walking home from school. The other day he asked me how the squirrels picked which trees they would put their nest in, and then wanted to know why the tree we were in front of had been skipped. Hmm...again, don't know much about the squirrel population other than they better stay out of my flowers this spring!

"A man's accomplishments in life are the cumulative effect of his attention to detail." ~John Foster Dulles

One of the most surprising things he commented on at the age of 5 was telling me which houses in our neighborhood had the same floor plans as ours. He said, "Look Mommy, that house is the same as ours but doesn't have as many front steps."  I have lived in this neighborhood 10 years, and had never noticed. About the same time he went over to a friend's house after school and when he came home I asked if he had fun. He proceeded to tell me in detail how our floor plans were the same and how our houses differed. I remember him saying, "Isn't it interesting that their bathroom is not in the same place!" Yes, my sweetheart, very interesting.

Last week while stopped at a stop light, he commented to my husband that it is ok to take your hands off the steering wheel when at a red light. He had obviously noticed my husband's typical response while waiting for the light to change. My husband decides to explain the proper driving technique and tells Jacob that when you are first learning to drive you put your hands on "10 and 2" just like a clock. Sure enough as we pull away and my husband casually puts his hand on the bottom of the steering wheel, Jacob points out that he is not doing it correctly.

Many times his questions revolve around God. God and heaven are very hard concepts for him to understand. They are for anyone, but someone visual who needs something concrete has a lot of questions. Those are the hardest ones, explaining something he can not see. He usually wants to know what heaven looks like and one time was concerned if there would be bathrooms.

What I have learned from reading countless books is that it is believed people with Aspergers have a weak Central Coherence, which basically means they see the parts but not the whole picture. They pick up on the smallest of details that others overlook, yet are unable to understand the whole situation. The Central Coherence is the ability the brain needs to process the world around us. Information is taken in and received in small pieces instead of viewing the big picture.

It certainly is an interesting concept, and makes complete sense, at least for what I see in Jacob.
Whether you look at it as a deficit or not, it is still remarkable. And if nothing else it makes me look at myself and think, "What else am I not noticing?" and take a little closer look at life.

Thursday, February 23, 2012

A mother's love

I knew when I started a blog that I was opening myself up to criticism and unwanted comments. It's no big surprise that there is a lot of controversial subjects that go along with Autism. Many are adamant about the cause of their child's Autism or Aspergers. Others believe that their course of therapy is the best. While others swear by certain dietary restrictions. But for me, I don't really have strong opinions on any of these subjects. My blog was intended for my thoughts and just tales of our life with Jacob and how his Aspergers affects it, both positively and negatively. My hopes were to connect to others since we were having little to no luck connecting in the "real world", and also just give a glimpse to our family and friends as to what our daily life entails.

And so I was surprised that my first very negative comment struck me so hard. I was even more surprised that this comment came from a young man with Aspergers. He had read my post "Holding my Breath" where I talked about my fears, worries, and the statistics of my baby girl developing an Autism Spectrum Disorder. He wanted to know what was so bad about having a child with Aspergers, and that I could not possibly love my son since I did not love his Aspergers.


I don't feel like I have to fully love Aspergers just as I don't love undesirable traits about anyone. The negatives of Aspergers are things we are helping Jacob work to improve on. No different than anyone working on self improvement. And the positives just need to be put in the right direction and I know that Jacob will do incredible things someday!

Every human being has traits and characteristics that are undesirable. No one is made perfect. I can tell you mine. I am not always patient. Sometimes I am quick to judge. I am definitely a worrier. Meeting new people makes me incredibly nervous and anxious. I know that I can be envious at times. I'm sure there are many other things I could add to this list. But does that mean that my own mother loves me less? No. Or my husband? No. That's what unconditional love is. I'm sure if you asked my husband if he detests that I am impatient at times he would say yes, but he still loves me. Does he have to love my impatience to love me fully? Both of my children have undesirable traits. And that is how I view the negatives of Aspergers, simply as traits of Jacob's that are not desirable and things we can work with him on to improve.

I love the way Jacob appreciates and notices all the little things in this world and opens my eyes to things I normally wouldn't have seen. I love his innocence and his naivety to the world. I love how caring and compassionate he can be at times.  I love his appreciation for and musical abilities. I love how incredibly smart he is and his ability to retain information and remember everything. I love his uniqueness and his interesting sense of humor. I love his creativity and appreciation for animals. But is this truly Aspergers or just who my son is? Couldn't he just be talented? I see all of Jacob's talents and gifts. But I give that credit to him, not to Aspergers.

But of course along with the good comes the bad. I don't love the meltdowns. I don't love his anxiety and fears that paralyze him from doing things that he wants to enjoy. I don't love the way his peers are beginning to notice and inquire about Jacob's quirkiness. I don't love his inability to go with the flow. I don't love his sensitivities to noises. I don't love his running response to fears.

I wouldn't change Jacob for anything in the world. ASPERGERS DOES NOT DEFINE JACOB. He is much more than that. I wish he didn't have to struggle. I wish it was easier for him.  One of the hardest things to witness as a mother is your child struggle or be in pain. The part of Aspergers I don't like is the part that makes my son's life difficult for him. I wish more than anything I could take that part away.

So why would I wish any of that on my baby girl? Jacob wouldn't wish that upon her.

If Jacob had cancer, would I be expected to embrace that, and love his cancer? Would it make sense for me to say, "Oh, I hope my unborn baby has cancer as well?" Of course not! This young man said, that Aspergers was not a disease. Ok...so let's say Jacob was born blind, which would pose many struggles and adaptations. Would anyone in their right mind say, "Oh, I so hope I have another baby that is blind!" Again, of course not! So why, would I WANT Aspergers or another Autism Spectrum Disorder for my baby girl? Obviously if she were on the Spectrum, we would love her to no end, just as we do now. Just as we love her brother. Aspergers is definitely a part of Jacob. My husband and I thoroughly accept that. But Aspergers is not entirely what Jacob is. He is so much more than his Aspergers.

How about looking at it from a logical perspective.

I love my husband.
I do not love golf.
My husband loves golf.
Therefore to love my husband, I must love golf.

Hmm.....that's not going to happen. I tried it once in junior high with my dad, and let's just say it's best I didn't try it again!

So now you are saying, "but golf is a choice. Aspergers is not a choice." Ok...I get that. Let's try this one.

I love my husband.
I do not love Myeloproliferative Blood Disorders.
My husband has a Myeloproliferative Blood Disorder.
Therefore to love my husband, I must love Myeloproliferative Blood Disorders.

Again, not going to happen. Not when it has made him very sick and at some point could end his life. No way can I love that! I could totally do without the countless hours my husband spends at doctor's appointments, lengthy hospital stays, and never ending medical bills!  But he was born with it, just like Aspergers. There was no choice. It affects his daily life, just like Aspergers.

So now the last one.

I love my son Jacob.
I do not love Aspergers.
Jacob has Aspergers.
Therefore to love my son Jacob, I must love Aspergers.

Sorry, just like the previous logic statements, it isn't working for me. They are separate to me. They do not have to go together. So that is my logical take on the arguement.

I never realized that this is such a controversial topic with Autism. I am probably setting myself up for even more criticism. Please just bare in mind that everyone is entitled to their opinion, both yours and mine.  Many agree with this young man that you must embrace Autism or Aspergers to fully love your child.  I'm sorry but I will never LOVE a meltdown my son is having while out in public. Still love my son, just not the meltdown. Which is no different than when my husband leaves his dirty clothes on the bathroom floor. Love my husband to no end, don't particularly care for this action. Or my baby girl launching her food at dinner completely bypassing the splat mat under her seat and staining my carpet. Love my baby girl, don't love the mess. And of course I get that Jacob's meltdowns are something that he can't control, and obviously my husband can learn where the laundry basket is located.  But in time Jacob will learn to control his meltdowns and his reactions to things. They will lessen. They will never completely go away, but will become manageable. He already has gotten better on many things that used to bother him.

I do not pretend to know what it is like to live with Aspergers. But I do know what it is like to live with a child with Aspergers. I don't have all the answers, nor do I want them. I am not out there actively searching like a mad woman for a quick "cure", but instead accept my son wholly and try to help him when he struggles.

What I do wish for my son is that he knows and learns what true UNCONDITIONAL love is, and that is exactly what his mother feels for him day in and day out. I celebrate his strengths and courage,  but wish the obstacles of Aspergers were not there each day for him.


Monday, February 20, 2012

Learning to say "I Love You, too"

It was about a month ago I realized that every night after kissing Jacob and tucking him in bed, I say the same thing, "Good night, Jacob. I love you." And at the door I always turn and say "Sweet dreams." Typically if Jacob responds it is in protest to going to bed, asking for one last drink of water, or some other stall tactic. Or sometimes he will quietly hum and start reading a book, appearing oblivious to my words. On this night I decide to teach Jacob to respond. I tell him how if someone says "Good night" a proper reply would be to say "Good night" in return. I then tell him that if someone says "I love you", he should reply with "I love you, too", if he indeed loves that person.

It's not that I haven't heard I love you from Jacob. He certainly says it and writes it in every card he ever makes for me. But when I say it to my son, sometimes it is hard to brush off his aloofness about it as if I am discussing the weather. In fact, I typically get a better response if I discuss the weather! I feel petty even writing this as I am so fortunate to hear those words from Jacob. Many parents of children on the Spectrum have never heard "I love you" from their child, let alone the sound of their voice. So I am thankful that Jacob is able to say those words. I cherish them every time I hear them.

It's a hard concept to grasp this love stuff. It is  difficult for Jacob to understand when it is appropriate and when it is not. I can not even tell you how many times I have gotten phone calls or notes home from school because Jacob has kissed little girls at school. When I ask them why, he'll tell me because they asked and he loves them. Hmm...valid point. But it's still not appropriate for school. Teaching those boundaries is a difficult task. He doesn't understand that just because he feels it doesn't mean he should act on it.

Another time as I was walking with Jacob to our car after a baseball game, he puts his arm around his buddy and says, "I love you!" To which the other 6 year old laughed and said, "No, you don't love me!" And Jacob said, "I do love you!" In the car I tried explaining to Jacob that yes, he loved his friend and cared for him, but instead of saying I love you, he could give him a high five, or bump knuckles, or just say, "Hey, I like hanging out with you" or "You're a good friend".

I've read that people with Aspergers are incapable of love. I don't believe that. It is true that emotional concepts are hard for people with Aspergers to understand. Those with Aspergers Syndrome lack the ability to understand and cope with other's feelings and thoughts. And even if there does become understanding, being able to communicate that understanding is difficult. We are still working on Jacob's understanding of love, when it is appropriate, and how to respond to others. He's getting there.

The other day Jacob came home from school with a wrinkled up paper in his backpack. He had made it on a word document at school in computer class. On it were two bright red hearts and a yellow star and words about Love. I read it with tears in my eyes. It was beautiful and heartfelt how my six year old viewed love. After reading it, I asked him what the assignment had been. Were they required to write about love? No, Jacob said, they could write about anything they wanted. Anything? Yes, anything. Wow! My sweet boy had not chosen to write about animals and the zoo as he normally would. He didn't write a list of his favorite baseball players and their stats or positions. He wrote about love. True unconditional love from his heart.

Here it is.

Loves are good to your family
but not your friends.
You can make loves to your family.
I like your loves mommy and daddy.
Have a great day at home mommy and daddy.
I love you so much.
I want to play with you after school.
My mom makes good loves for me.
Have a great day mommy.


So maybe my son has a better understanding than I realize. He definitely feels it in his heart, and he's learning when it is appropriate. Hopefully twenty years from now when that special someone says those words to him, he will know to say "I love you, too" if he indeed feels it in his heart.

Saturday, February 18, 2012

Holding my Breath

Everyone says that you shouldn't compare your kids. They are each individuals and develop at their own rate. Each has their own personality, likes and dislikes, yada, yada,  I get it. But when you have a child on the spectrum, it is impossible not to compare your second child. At least for me. I don't compare in a "Oh, look at the baby sister, she is so much smarter than older brother was at that age." Or "Oh, look at the baby sister, she is no where near as bright as her big brother was at that age." My comparisons are out of wonder, fear, and the question of are we going down the same path as before.

The fact is that parents of a child on the Autism Spectrum, have a 1 in 5 chance that their next child will also develop the disorder. The risk is even higher if the second child is a boy. Researchers recommend closely watching younger siblings for signs of Autism, so early intervention could begin as soon as possible. This updated information came out late last summer, when my baby girl was just a little over a year. Just about the same age when it became quite evident that something was different about Jacob.

At the time my baby girl was just starting to walk. I remember reading the article and holding my breath as the wheels in my head turned. You see, Jacob had met all his milestones very early. He talked a ton, he walked early, rolled over early, all but crawling. He actually didn't crawl until he had been walking for 2 months. So naturally when his baby sister wasn't walking until 14 months, I was beginning to become concerned. But before you knew it she was running, and I exhaled and could breathe a little easier.

It was a few months later that I saw her walk on her tip toes for the first time. Again I held my breath. "NO!" I remember thinking. "Please, God, No." So again I naturally compared it to our journey with our son. Were we headed down the same path? Jacob had started walking on his toes at about the same age. But he never stopped. He still toe walks a majority of the time. Thankfully his baby sister does it every once in a while. Again, I could breathe.

There have been many more times I have held my breath over the past year. The first time my baby girl put her hands over her ears and said, "Loud!" in reaction to a sudden noise. Was this her own sensory issues, or was she modeling behavior she had witnessed from her brother? Or maybe it was just loud. Either way, I held my breath and still gasp a little when I see her do this. When she tells me "Owie, foot" and she has a crumb or small piece of paper stuck to the bottom of her foot. Is that touch sensory issues? Or maybe it just legitimately bothers her at the time? Are her wails of "Cars! Coming!" from the backseat of the van motion sensory issues? Or is she just noticing things for the first time now that she is no longer facing backwards? Is it a true fear or anxiety? Or is it possible she has just witnessed her brother get upset about things and has taken on that same tone?

But then I notice the differences. My baby girl plays. Jacob never played. I've watched her play with her little people princess doll pretending to have her fall off the balcony of the castle. I've seen her prepare me a meal and ask me what I want off her pretend menu while playing in her kitchen. And I've caught her snuggling her baby dolls, and pretending to put them to bed. There was no pretend play with Jacob.

And the fact that she already can buckle her own booster seat at the dinner table. I swear I could still to this day put Jacob in there and he would not have any clue as to get out. So her fine motor skills are developing. I see how she holds her crayons, already the correct way and with a firm grasp, where Jacob still has such a light approach to writing and coloring and many times needs reminders to flip his hand to hold his pencil correctly. That's why he always prefers markers.

And everything is "My do it!" Already she is asserting her independence. Jacob was never that way. He still isn't. He still asks for assistance on many things, things that his baby sister is already trying to do on her own. There are many mornings when he asks me to help him with his socks because he can't get them "just right".

But one of the biggest differences is the way she will run up and throw her arms around me. Or in the mornings when I get her out of her crib, she lays her head on my shoulder and just wants to be close to me. Jacob is affectionate, but on his own terms. And even when he is, it is a light touch with me reminding him to hug me tight or to put his arms around me.


Yesterday morning as we were walking back home after dropping Jacob off at school, the garbage truck happened to be right in front of our house. My typical response was to hold my breath, a learned response from years of anticipating meltdowns and waiting for reactions from Jacob. But there wasn't a reaction. My baby girl watched in amazement. There were no hands over the ears. There were no tears. And as the garbage truck pulled away, my sweet baby girl looked at me and said, "Garbage truck. Go?"

And I could breathe again.



Friday, February 17, 2012

Playing Hookie

So I kept my son home from school yesterday. No, he wasn't ill or running late. Nor was he in a foul mood. In fact it was one of the more pleasant mornings in a long time at our house. Jacob woke right on time at 6:30 like he does every morning. He snuggled with me for a while, and couldn't wait to wake his baby sister. He woke her with a sweet song, we ate a hearty breakfast, and then played animal game after animal game. As we were playing our third game of Zoo Panic, Jacob looks at me and says, "Isn't this such a beautiful morning?" Yes, my sweet Jacob, it is.

You see Jacob had a field trip at school this morning. While most kids love this change from the norm, for Jacob it is terrifying. It started weeks ago when he brought home the permission slip. "Oh, Jacob look. You have a field trip coming up!" trying to sound excited, so hopeful that he would be, too. "I'm not going." I decided to drop it from there and continued to read about how the students would take the bus downtown, and there was no room for parents. Hmmmm.....not a good start already.

It is hit or miss with Jacob on field trips. His very first field trip was a disaster. It was in preschool and to the pumpkin patch. All parents could go and of course I was there. I could tell Jacob was nervous about his first bus ride, but I had hoped he would get over his fear once he saw his peers getting on the bus with no hesitation. Right when it was Jacob's turn to get on the bus, he lays himself flat out on the concrete right by the bus door. "I'm not getting on the bus!" he yelled. At a loss as to what to do, and with no diagnosis yet to explain his actions, I scooped him up and carried him onto the bus. The entire time at the pumpkin patch he could not enjoy himself because he was so fixated and worried about the bus ride home.

Oh, there have been plenty of field trips since. The zoo was another panicky bus ride. I believe it was that time that he yelled at the bus driver because he was worried he would honk the horn. The trip to the farm where he freaked out about the hayride and refused to go in the dairy barn even though at the time his love was for cows and he had been in that same barn many, many times. The grocery store field trip where we walked and he was so worried about the on coming traffic running us over, even though we were on the sidewalk. And I heard he had a very hard time at the fire station. Imagine that! So glad I missed that one.

With the impending field trip in a few days, my husband and I discussed it. We had never let Jacob just stay home from school for no reason, and I certainly didn't want him knowing that was an option. But once I found out the play was about a witch, the deal was done. No, field trip. The last thing we needed was a new fear to add to Jacob's already long list of things he worries about.

The thing that is different about Jacob than other kids is that he can overanalyze and worry about something for days, weeks, even months for hours at a time. His focus becomes so fixated on the fear, that there is no reasoning with him. My husband and I struggle with is it worse to tell him about it ahead of time in hopes of preparing him, only to get the hours upon hours of fear and panic with us trying effortlessly to explain? Or is it better to throw him into a situation that makes him uncomfortable with little to no warning, with no idea how he will react? I tend to lean more towards the first in prepping him and helping him try to work through his anxiety. It is an exhausting approach, but I feel it builds trust with our son.

So I didn't talk about yesterday's field trip until a few days before. I asked him if he wanted to go, and he immediately started in panic mode. "Jacob, it's fine," I tell him. "You will stay home with me." "But I can't do that," he yells, "the police man will come and take you away if I don't go to school! I have to go to the field trip!" Oh, my own words coming back to haunt me. At the beginning of the year when Jacob was throwing a fit each morning about going to school, I had told him it was the law to go to school, and that Mommy and Daddy could get in big trouble if he didn't go. I didn't realize that this was the image he had played out in his head! I explained to him that I would let his teacher know and everything would be fine.


And it was fine. More than fine. A perfectly calm, relaxing morning with my son. How different things could have been had we chosen to force him to go. Was it worth the battle? No.

Thursday, February 16, 2012

Laugh a Little Each Day

There is so much more to my sweet boy than Aspergers. Everyday he is a joy and makes me laugh. Some of the funny things Jacob says are his Aspergers coming through and the literal way he interprets language. Others are the sweet innocent things kids say. I started writing down all the cute little things he said years ago. Here are a few of my favorites. Hope they make you smile.
One morning, Jacob is laying in bed between my husband and me snuggling. He starts rubbing my husband's face and my husband tells Jacob, "Those are my whiskers." Jacob is silent for a minute and is processing this new information. Then Jacob says, "Daddy, are you a cat?" (Age 3)

The day before Jacob's Halloween party at school, his teacher told all the students to not tell her their costumes so she would be surprised and that it was a secret. The day of the party Jacob's teacher greets him at the door and says, "Jacob I love your costume! Are you a golfer?" Jacob tells her, "I can't tell you. It's a secret, remember?" (Age 4)

Another lazy morning snuggling in bed when I was big and pregnant, I asked Jacob if he wanted to feel the baby kick. He put his hand on my stomach and said, "Mommy, is the baby playing in there?" To which I said, "kind of." Then he asked "Is she playing baby dolls?" I laughed and said, "No, more like she is swimming." He sits up in bed and says, "You mean there's a lake in there, too!!" (Age 4)

My sister and I were having a garage sale at our house. Just in case there was any confusion, Jacob made signs that read, "Garage NOT for sale!" (Age 5)

It was my husband and my anniversary and I was explaining to Jacob what and anniversary was. He says to me, "But mommy I want to marry you!" I told him I was already married so he would marry someone else once he was old enough. He looks at me and says, "But Mommy, I can't marry a STRANGER!" (Age 5)

We are running errands, and I ask Jacob if he would mind if we stop at one more place. He says, "No Mommy, it may just put me over the edge." (Age 5)

Trying to get information out of my son about school is almost impossible. After the third day of 1st grade, I ask him to tell me something fun he did at school that day. He replies in a not convincing tone, "Everything was fun." Wanting details I push for more and say, "No, tell me ONE thing that was fun." Jacob looks at me seriously and in a concerned way says, "Mommy, do you not know the meaning of the word everything?" (Age 6)

We are all riding in the van, and in front of us is one of those cube cars. My husband says, "Jacob, look at that square car!" To which Jacob replies, "Actually Daddy, that is a rectangular prism." (Age 6)

Wednesday, February 15, 2012

It's a lonely, lonely world

I can count on one hand the number of actual true playdates Jacob has had. Sure our neighbor kids come over to play plenty with Jacob, but as far as kids from school, it doesn't happen. That's really hard for a mom to write. It hurts my heart to think about it, and makes me wonder what does Jacob's day look like at school. Is it lonely for him? Does he notice? Or is he too preoccupied with his own thoughts of elephants and baseball to care? When I ask him who his friends are at school he usually tells me "everyone". But I know that isn't true. He's told me about the boy in his class who yelled in his ear because he knew Jacob didn't like loud noises. And I've seen how some kids dismiss Jacob while I am up at school functions.

If you have read articles or books on Aspergers, many would say that children with Aspergers tend to be loners. I don't believe that. At least not in Jacob. Jacob definitely has an interest in his peers. He does not WANT to be alone. He wants friends. He just doesn't always know how to act appropriately. He doesn't understand that his peers don't want to talk about animals, or play animals, or learn about every homerun on his favorite baseball team. He is unaware that they are not interested and keeps on pushing it. And he doesn't get why they wouldn't want to learn about these things. They are fascinating to him! He can't comprehend why his friends wouldn't want to learn about elephants for the 100 time. How  frustrating and sad it must be for my son who has a desire for interaction and togetherness with his peers, yet struggles to make it happen.

It is typical for children with Aspergers to be very naive and childish in their interests. This makes it even harder for Jacob to form friendships. How can he relate to his peers when they are talking about the latest episode of iCarly or Spongebob, and Jacob is content with watching Bubble Guppies or Mickey Mouse with his baby sister. It's not that we haven't tried to get him interested in programs more for his age. He doesn't care. Or the humor is lost on him. Jacob also wouldn't think twice about playing with his sister's little people farm or a puzzle made for an 18 month old, as long as it had an elephant. I used to not let him. Now I talk to him about it and let him know that it is not for someone his age, and maybe just to not tell his friends at school.

Most parents probably don't give much thought to their kids' friendships. Sure they want them hanging out with nice respectful children and not trouble makers. But for us, Jacob's socialization is always an issue and a worry.  Since Jacob's school playground is right in our backyard, I admit my husband and I both watch him at recess. I've done it for two years now. I know someday a police officer is going to come knocking on my door after a report of a suspicious person staring at the playground. Hopefully they will understand that I am just a concerned mom who needs the reassurance her child is ok. It gives me a good idea of who Jacob is playing with and at least then I know he isn't just walking around the playground alone. But more than anything it gives me hope that at some point true deep friendships will be formed.

So friendship must be taught to Jacob. It is and never will be a natural thing for him. Playing with a friend, making a friend, and being with a friend are overwhelming social skills for an Aspergers child. If you think about yourself, no one taught you how to be friends. Sure someone may have told you about sharing, being nice, but at an early age you learned social skills on your own. So now imagine that everytime you tried to connect you failed. If trying to make friends causes you so much anxiety, stress, and rejection, at some point being alone would be easier. To help Jacob with this he attends a social skills class twice a month with other kid his age.

Jacob usually gravitates towards girls as his friends. Maybe girls are safer and more accepting. I think it is easier for him around girls. He knows to giggle, smile, and give them attention. Someday he will make an incredible husband! Not that he is in to girlie things. He loves his sports, and princess stuff makes him say "ewwww!".

But if Jacob had his choice, he would pick an adult, especially a "new" adult. Someone new is a captive audience for Jacob. They are ususally amazed by his amount of knowledge on various subjects. Countless times someone will stop by the house for my husband or me, and Jacob sucks them into his world. And then the next day he will ask if that person can come over again to "play" with him. Trying to have adult friends over is almost impossible because Jacob is relentless vying for their attention.


Not only can Aspergers be lonely for Jacob, it can be lonely for us as his parents as well.  I guess I always envisioned that once Jacob became school aged, he would have tons of friends, and their parents would enturn become our friends. But that just hasn't happened. Since Jacob hasn't truly connected with anyone from school, we haven't had those opportunities to meet more parents.  It's not like his classmates' parents are calling us up saying that their child can't wait to get together to play with Jacob. It just doesn't happen. But I don't blame them. Would I be calling up someone from Jacob's class who he didn't care for or hadn't connected with and invite him or her over? No, but that doesn't make it any easier. It feels like rejection on so many levels. And it hurts. How many times when Jacob was little would I have loved to have someone invite us for a playdate so the kids could play and the moms could chat. But it didn't happen. Sure you could turn it and say, but you didn't make those calls either. But you have to realize when you know something is different about your child, the last thing you are going to do is put them out there to see that rejection first hand. I casually tried. I made it a point to tell the moms of the kids that Jacob talked about how much he liked them. Apparently their children weren't talking the same at their house.

And I wonder if  over the years some of our friendships have been dissolved because of our son? Please don't misinterpret this. We have lots of friends, and in no way would I blame Jacob for any friendships that have fizzled out. But some friends we just don't see as often as we used to. Would those friendships have continued to grow had our children connected? We have several incredible friends who are also our neighbors that we get together with regularly. They have known Jacob since the beginning. They understand what sets him off and they don't react or care. They know that at times our plans can change at the drop of a hat, or sometimes we have to leave early. There have been plenty of times when we have had to pick up Jacob and drag him home kicking and screaming because he is having a meltdown. We have many other friends that we don't see very often that are very accepting of Jacob. I'm referring to meeting and making new friends, and friendships that were never formed because they never had a chance to start.

I'm not intending for this to come across as a pity party. And it is certainly not that our friends don't care. We have an amazing support system of friends old and new, with kids and without. Our extended family is wonderful and love Jacob and embrace his quirkiness and oddities.  But no matter how much they all care, they simply can not relate. They see glimpses of our life here and there. Aspergers is 24/7. Aspergers is exhausting.

To use one of  my sister's favorite quotes, "It is what it is". And somedays it is hard. And somedays it is lonely.

Tuesday, February 14, 2012

You Hit me Why?



"You hit me why?"

"I didn't like the shape of my baby sister's poop!"

Seriously folks, I can't make this stuff up. I should have known how my night was going to end up, just by how the day had started off. Ah, it was a snow day, or let's get it right, it SHOULD have been a snow day. Jacob and I anxiously watched the TV while laying in bed waiting to see his school on the screen. No such luck. "Let's watch one more time, mommy, just to be sure." But it wasn't there, and we were now starting our day off already behind because of the minutes wasted to our longing for a snow day.

Jacob was running in slow motion yesterday morning, and no matter how many reminders I gave him I couldn't get his bottom moving. Finally we were out the door and buckled in the car. "Jacob, do you have your backpack?" "Yes". "Your lunch box?" "NO! It's not here." I trudged through the snow back inside the house, searching for his missing baseball lunchbox, the ONLY lunchbox he will use. Not inside. How does a lunchbox go missing from our door to the driveway? We were running late and Jacob's aide who meets him at the school door would have probably already walked in. After tearing the car apart, I ask Jacob to get out of his booster seat and check. Sure enough he was sitting on it. Really? How can you not feel that?

I came home full of mommy guilt from being on Jacob all morning. I hate when our mornings go like that. I hate leaving him like that. And so I vow to have an incredible afternoon and evening with my son!


At 3:30 I head on up to take my place in the pick-up line at school. Normally we are walkers because we live so close to the school. I detest school pick-up. It always seems so pressure filled. And if you don't know the school pick-up rules, you will soon find out! Teachers waving their arms keeping traffic going, parents trying to nudge their minivan ahead of others, and if one car is holding up the line, you can feel the tension in the air. This is why I try to walk most everyday to avoid pick-up at all costs. When you have a child on the spectrum, their fine motor skills tend to be lacking, plus things just take a little longer. The other boy I take home has high functioning Autism, so I would be needing to assist both boys. One of the "rules" of pick-up is that the parents are not to get out of their cars. Impossible when your child has a hard time maneuvering the doors, getting their backpack in, and buckling up. But I had a plan. Jacob was to help his friend buckle his seat belt and then get his own. It's almost impossible for me to reach clear to the back of our minivan. While Jacob is trying to help his friend, I am performing a pick-up sin by standing outside the van door trying to verbally give assistance. No such luck. Jacob had pulled the seat belt all the way out and the only way for it to work would be to put it all the way back in and start over. So that's how I ended up standing in the back of my van door with my bottom side showing to everyone waiting in the pick-up line while I finally get his friend buckled in properly. Oh, yes, I could feel the daggers coming at my back end as I held up the line!


"But I don't want to play in the snow, Mommy," Jacob said as I told him the plan to head outside and go sledding. Jacob doesn't like anything that makes him uncomfortable and playing in the snow involves getting wet, cold and big bulky clothes. Although it takes a lot of persuading, he always has fun. So I helped him pull and tug and after much assistance he had on his boots, snowpants, and gloves. I am so thankful he has learned to zip his coat this year! We head outside and over to the small hill at the school. Jacob has never before wanted to go sledding down the hill, but he went right on up without hesitation. I was proud and surprised. Maybe he has gotten over that fear, I think. He's at the top and heads on down screaming the entire way, but not a "yee haaaa, this is a blast scream", but instead a "this is awful and I am about to get mad scream." At the bottom he is livid, and storms off pulling his sled behind.  He stands on the outskirts fuming as he watches his friends going down the not so very big hill. But to Jacob it is a mountain. How frustrating it must be to watch your friends do something that logically you know you can and should do, but out of fear and anxiety you are unable to enjoy. Finally I convince him to join his friends at the top of the hill, and he has a blast giving them a send off push down the hill. I am thankful he is oblivious to the hurtful comments made by his friends. I'm sure they can't understand either why Jacob is so worked up about something so minor.


At home, I can still sense that Jacob is tense and on the edge ready to lose it at a moment's notice. Just get through dinner, homework, and bed, and tomorrow is a new day I remember thinking. Dinner goes fairly smooth aside from Jacob's normal nightly declaration that he is not eating what is put before him. Seriously? He loves spaghetti. But not tonight. He is delicate tonight and could break at any point.   After dinner the baby sister uses the potty, a big event in our house that draws all of us into the bathroom together. Normally Jacob gets so excited when his baby sister uses her potty chair cheering her on in a quiet voice. We have learned from years of Jacob getting upset, to cheer in a loud whisper so it isn't too overwhelming for him.  While my husband and I are praising our baby girl, Jacob looks at me and says, "That does not count!" and stomps out of the bathroom. I should have let him go. Knowing he was on the verge of a meltdown, I shouldn't have followed him, but I hate to see my son upset, so I did and asked him why he was upset.

And that's when he hit me. Full on, hard core hit to the stomach. Why? Yes, you read it at the beginning. He didn't like the shape of his sister's poop. Was that the real reason. I highly doubt it. I'm guessing it was just at that moment he chose to really let out all his frustration from the day. He was sent to his room for the remainder of the night. Not the strictest of punishments many would say, but for Jacob it is torture to not be near us. Surprisingly he didn't come out, and I could hear him praying to God.

"Dear God, I am really mad right now. Please don't EVER let my sister poop again."

I'm thinking that prayer might just go unanswered.




Monday, February 13, 2012

I never thought I would be that mom

I never thought I would be that mom. You know the one I'm talking about. The one who makes her child a different meal than the rest of the family and doesn't insist on them eating what was prepared. When Jacob was an infant, I remember listening to other moms say how the only food their child would eat is chicken nuggets, or pizza,  and I would roll my eyes thinking, "Wow, that will NEVER happen at our house!" The most important parent lesson I have learned is to never say never.

My husband and I used to insist that Jacob eat whatever was placed in front of him. It was a battle. We would fight him and fight him, with many times Jacob ending up in tears. Many times he would pick up his little dinosaur plate and march it into the other room screaming in protest that he was not going to eat it. We tried everything. Bribes of yummy desserts. Acting on our threats of saving his dinner for the next morning's breakfast. Everything short of force feeding the kid.

And then one night at dinner after a particularly hard fight, my husband simply asked me, "Why do you put it on his plate? If you know it is going to make him upset, why put it on there?" He was right. Why was I doing this to myself and to Jacob? Just because I didn't want to be "that mom"? Who cares? The thing is, Jacob likes a lot of foods, he is just particular about how they are prepared. For instance a casserole would send him into a huge meltdown. A taco would send him into a tailspin. Anything resembling a veggie or meat on his pizza would be cause for a major fit. So why was I fighting him on this? As long as he was getting an adequate diet, why did it matter if he preferred canned green beans over fresh? And one of his favorite foods is avocados. You can't say that about many kids. So who really cares if on some nights I make him safari animal chicken nuggets instead of the casserole I spent hours making?

Food aversions are a common characteristic of children with Aspergers. Usually they are brought on by sensory issues where the child prefers different textures over others. I never used to think that Jacob had any sensory issues with food. He definitely has sensory issues with sound, touch, and motion, but I'm starting to think that he could have some oral issues as well. Lately at school Jacob has been humming a lot and it is starting to annoy some of his classmates. It is actually not so much of a hum, but a long drawn out "eeeeeeee" sound. Jacob usually does this when he is really concentrating hard and deep in thought. His doctor had told us not to try to stop him as he is filling a sensory need. When I ask Jacob about it, he says he likes the way it feels on his tongue. "Eeeeeeeeeee..." hmm, it does feel kind of nice. For whatever reason, his E sound calms him. We used to try to stop the E sound, but have come to embrace it. I think it actually calms me as well, because I know that Jacob is calm while doing this. But I can see how it could be so distracting at school. So his teacher recommended sending in hard candy or gum. Today's the first day on that, so we'll see how it goes.

For Jacob it is not only the taste and texture of the food, but also the presentation. Maybe that's how my design degree comes into great use now that I am a stay at home mom! Spacing of the food is VERY important for Jacob. Nothing can touch. And if it does? Wow! A very upset boy who is paralyzed by the sight of his food touching. He will shriek until the situation is made right. Each meal he uses the same little trays each with four spots. He likes four foods, and none of them can be over flowing into the others.

So every night when Jacob comes into the dining room for dinner he asks what we are having. I tell him to which he replies, "is it my favorite carrots?" or "is it my favorite chicken?" I've learned what that means. Nothing fancy mom! I've learned he likes his food fairly plain. He doesn't like things mixed together.  He wants four non-touching foods on his plate.

And most importantly, I've learned it is ok to be "that mom".

Sunday, February 12, 2012

The "Rules"


Almost every car ride starts the same way at our house. As we are pulling out of the driveway, I always ask, "Now Jacob what are the rules for...?" He's got them down pat. Target? The rules are stay by your mom and dad, and no running. Church? The rules are no running, stand when we stand, and be quiet. A restaurant? The rules are listen to your mom and dad, and no laying on the floor. Yes, you read that right. Our son likes to lay on the floor at restaurants. Gross, I know. We have went over it and over it, and he clearly knows the rules since he can tell them to me, yet every time with out fail as soon as he has finished eating, he slowly starts his descent from the booth to the floor below our table. Talk about stares! When you have this rather tall 6 year old laying on the floor of a restaurant, it does draw some attention. When he was little he would simply lay in the booth, but that no longer provides his long legs room to spread out. We've finally figured out that it happens when his tummy is full and he wants to get comfy. He's such a fast eater that usually we are not even finished with our salads when Jacob starts trying to head to the floor. He's gotten a little better. At least now he doesn't finish each of his meals with "I'm going to throw up!"and one of us rushing to find the restaurant's restroom. That was the trend for a while. It's when we realized the servers were bringing him countless glasses of milk, that we put the kibosh to that. Only water or Sprite for our kid now when eating out!

Most kids with Aspergers like rules, and for the most part Jacob does like them. It gives him some boundaries. And he is sure quick to point out when someone else is breaking the rules! Sure Jacob likes his structure and routine, but when it comes to rules he is all about logic. Once he understand the "why" behind the rule, he is more likely to follow it. There is a lot of explaining at our house. Not that it always makes an impact. He still climbs on the outside banister of our stairs, even though I have explained how unsafe I feel it is. I guess his own reasoning wins out on that one. But when I posted a sign above my bed that said, "No jumping on bed!" after his sister took a tumble, all jumping ceased.

One of my favorite responses from Jacob was when we were getting ready to go to our neighbor's Super Bowl party last year. I said, "Now Jacob, what are the rules for P & T's house?" I was thinking he would respond with something like "play nice" or "no getting upset when it is time to leave." How shocked was I when he said, "No putting boogers on the walls." What!! You do that? Oh the hygiene habits of a then 5 year old!

So he likes his rules, but in his analytical mind only if they make sense to him. Take for instance a few weeks back, we were dropping our son off in our church nursery while my husband and I were to attend a meeting. I work in there, so it was my coworkers watching Jacob. I had talked about the "rules" before we dropped Jacob off, and told him the one very important rule in the nursery is no running. Too many babies, and too many kids, and too many chances for kids to get trampled. Plus one running kid gets everyone fired up. I know that from six years of experience working there. As we were picking him and his sister up after our meeting, I noticed two plastic yellow Little Tyke shopping carts sitting outside the door to the nursery. I knew that meant someone had been running with the carts, and I knew it was Jacob. I walked in the door and asked my coworkers if Jacob had been running with the carts, and sure enough he had. He had made a new friend, and was having a blast! I was told that yes Jacob had been running, and she had to set him in time out. I was mortified and we headed for home. I knew punishing him again was not an option. He had already served his time in the nursery. But when I asked him about the time out later, he held up two fingers and told me "twice". Two times in time out! I was more than mortified!

If you have a child with Aspergers, you already know that consequences and punishments do not work for them. There is no connection for them between the offense and the punishment. They are two complete separate incidents that they view unconnected. Not only that, but a simple 5 minute punishment turns into hours and hours of agony. Trust me. Been there, done that many times. Is it really worth it? We've learned that Jacob responds much better to rewards and positive reinforcement. Sticker charts can do wonders for my child, especially if they happen to have an elephant. We certainly don't let him get away with everything, and there are definitely punishments. I think both my husband and I have lightened up on them somewhat. There were times before where I just couldn't comprehend why he didn't understand what he had done wrong. It drove me crazy! But when your child lacks empathy and can not grasp the concept of cause and effect, it makes sense to me now why Jacob would respond the way he did to punishments. I remember one particular time Jacob had done something naughty and I had had enough. In my not proudest mommy moment, I told him I was taking away his animals, the Wii, and the computer. Thinking I had made a HUGE impact, Jacob looked at me and said, "What about the TV? Did I lose that, too?" hmmm....so much for that punishment being effective.

Punishments and discipline will probably always be a huge obstacle for my husband and me concerning Jacob. Maybe someday we will get it all figured out, and until then we will keep continuing going over "The Rules" each time before we venture out.

Oh...and I'm happy to report my neighbor's walls were booger free.



Friday, February 10, 2012

"Mommy, I did it!"

Spring Training has begun at our house. Actually I'm not sure it ever stopped. Baseball has been played in our house everyday for years. I know I mentioned Jacob's obsession with animals, but he also has one with baseball. I'm guessing it started when I would drag Jacob to all of his cousin's baseball games when he was a toddler. Here this little boy all of two would sit and watch the entire game, while other kids his age were running around or carelessly climbing the bleachers. Jacob just watched. He's always been an observer. And at an early age he knew the rules of the game and would pretend to be the "strike" (what he called the umpire).

We started playing baseball in our living room when Jacob was two with a large beach ball and a big over sized plastic bat. That didn't last long unless we wanted to continue getting smacked in the face with a beach ball. So we switched to a foam bat and ball that is only sold at one particular store, and only in the summer, and only at his grandparent's house 6 hours away. Needless to say we stock up over the summer and purchase about 6 bats enough to get us through the winter. Almost every night Jacob asks one of us to pitch to him and we take our position on the couch, while Jacob tries to hit a homerun through the opening into our kitchen a floor above.

Unfortunately not only does Jacob play baseball at home, he plays it at school, and not at recess. Every day Jacob brings home a behavior sheet from school, and every day it says, "playing baseball". A pencil makes a nice bat apparently. If not his pencil, he will use his arms as a bat. Everything becomes a bat. And when he is in his baseball zone it is hard for him to stop. I'm sure it is so frustrating for his teacher.

Although our local major league team is not the greatest, Jacob loves them!  He loves watching the games on tv, and also will rewatch old clips online of his favorite players. Over and over he will watch the same clip. The cool thing is he can copy each player perfectly. He knows their swing, stance, and even their facial expressions! He also does a pretty good slow motion replay in case you missed it the first time. It's amazing to watch! I have tried on more than one occasion to video tape him, but he wants nothing to do with that. When he is up to bat for his own baseball team I have to remind him to be "Jacob" and not any of his favorite players.

But his fears keep him from going to watch his favorite team. He is so worried about loud fireworks at the game, or the announcer being loud, or just overwhelmed by the sheer size of the stadium. My husband tried and tried to convince Jacob to go last season with no success. So finally on the last game of the year, we put him in the van, and drove to the stadium. We knew what could happen, but we also knew how much Jacob loves baseball. We were prepared. Headphones, check. Earplugs, check. Hoodie, check. We were just short of wrapping his head in saran wrap to keep out any sound. The entire way there Jacob kicked and screamed from the back seat. And of course I kept telling my husband we were doing the wrong thing. It's a fine line for us, trying to decide when to push a little and when to hold back. I admit the mama bear in me would just keep him safe at home forever if I could, while my husband would expose him to the entire world. It took a while to get him in the stadium, but he did it. Once in our seats we knew it would be too loud for Jacob as we were right under the speaker. Jacob was covering his ears and crying and I was telling my husband again that we should have just watched the game from home. But my husband was not going to give up on the night. He went and exchanged our seats for front row on the third base side. One of Jacob's favorite players was right in front of us! Jacob turned and looked at me and said, "Mommy, I did it! I'm at the stadium!" with the biggest proudest smile on his face. I can still picture his little face beaming while under the stadium lights and the fans cheering around us. I knew then that we had done the right thing. That night is one of my favorite nights ever with my son as a family.


But more than anything when it comes to baseball, I am thrilled that he is on a team and wants to play. My husband is the team coach, which helps. There are some games where Jacob sits on the bench more innings than not. Not because he is in trouble, but because that is what he wants, and my husband doesn't  force it. There are games where Jacob has had meltdowns and I have had to carry all 65 pounds of him to our van while both of us are crying big tears. And there are times were he surprises us beyond measure, like the time he got hit in the face by a ball his dad threw giving him a bloody nose, and he handled it like a trooper. I remind my husband that the most important thing for Jacob is that he is part of the "team". That he learns how to win as a team, and lose as a team. That he realizes the joys of making friends and working together. But I know at some point the kids on his team will start noticing that Jacob is different. But I hope when that time comes, it comes with understanding and acceptance.


Thursday, February 9, 2012

Lions, and Tigers, and Elephants, OH MY!

I'm guessing most of you couldn't tell me the difference between an African Elephant and an Asian Elephant. That is unless you have met my son. He's always had an obsession with animals, but for the past few years it has been all about elephants at our house. Not one single day goes by that we don't talk about elephants. Actually I'm not even sure we go a waking hour without talking about elephants. I have no idea how his obsession started. Maybe that day I did a particularly good elephant sound while playing. Or maybe we were reading a book and something caught his attention. Who knows. For us it seems that elephants have been a part of Jacob and our lives forever.

Maybe Jacob unknowingly chose elephants because they are so similar to himself. It is only fitting while Jacob has an over sensitivity to loud noises, that elephants can hear things that you and I can't hear. Their hearing ability is the best amongst all land animals.

And we have all heard the saying "A memory like an elephant", well that is certainly Jacob. A perfect example of this is a few months ago while Jacob and I were hanging out watching tv while laying on my bed, Jacob said to me, "Mommy, do you remember when you had that ceiling fan above your bed?" To which I said, "Jacob, you remember that?" And he replied, "yes, I used to love to lay in the big, big bed and watch it go round and round." hmmm....Yes he did like to watch it go round and round. The thing is we had a fire in our home when Jacob was 9 months old, and replaced that ceiling fan afterwards. So Jacob was having a memory from when he was an infant! I'm sure it did seem like a big, big bed in his memory!

Not only do elephants have an incredible memory, they are also regarded as one of the world's smartest animals with well developed problem solving abilities. I've mentioned before how bright Jacob is. Sure, everyone thinks their child is smart. But there are times where I have to pick up the phone and call my sister or mom because I am truly floored by something Jacob has told me. Take last year for instance. Jacob had just started kindergarten. He had formed a new found love for drawing and was going thru paper at a rate of about 50 sheets a day. I was tired of my printer paper always being out, so I started rationing it out to him with 5 sheets at a time. Thinking I am going to "teach" my son something I tell him "well, we could cut each of these papers in half and then we would have 10 papers!" To which he replied without hesitation, "Or we could divide them into 18 pieces and have 90 pieces!" "yes, yes, you are absolutely correct," I say as I am trying to do the mental math in my head with little results. This is when I love Aspergers. :)

And one last final comparison between Jacob and elephants would be their size. Elephants are the largest land animal. (Jacob tells me this fact daily) Not that my son is huge by any means, but he is quite tall for a 6 year old. He is one of the youngest in his class and towers over most of his peers. Most people would guess him to be around 10, which makes it even harder when he is having an Asperger's moment while out in public.



When your child has an obsession, it unconsciously becomes your obsession as well. It doesn't matter what I am doing, if I see an elephant, I instantly think of Jacob. A commercial with an elephant, and I am scrambling for the remote to hopefully DVR it to show Jacob later. A book with an elephant is quickly purchased and put away for the next major holiday or birthday. Never would I dream of buying a package of animal crackers without thoroughly inspecting them to make sure they contained an elephant. And then while packing his lunch for school I am careful to make sure there are more elephants in his ziploc baggie than any other animal.

Oh, for a while we tried fighting it. We limited the amount of time he could focus on elephants or other animals. We refused to play animal games. We tried forcing other interests on him. But lately my husband and I have just been embracing it. I've tried viewing it as a passion which has a positive connotation, versus an obsession. I've learned that Jacob's personality is so very connected with his passion. If I reject his passion for elephants, is he perceiving that as a rejection of him?

For now it is elephants at our house. Day in and day out. So if you come to visit, be prepared for a lengthy lesson. If I know Jacob, I'm sure there will be a quiz.

Wednesday, February 8, 2012

Just an Ordinary Night

I admit last night I was tired. After two hours of talking about safari animals with Jacob, I was done. Love my son, but sometimes it is almost impossible to fake excitement about elephants. One of Jacob's favorite things to do is to act out and make up his own video games about animals. He gets out his bucket of plastic animals, asks me countless questions, so I can "win" the animals to put in my make believe zoo. And he definitely knows when I am not paying attention and is quick to point out if I do not have enough points to win certain animals.

I was over it. I knew the night would continue the same if we didn't come up with a plan, so I suggested going out for ice cream. A change of venue would surely help Jacob forget about animals for a little while. So we headed out for frozen yogurt at one of the new trendy yogurt shops where you pick your own yogurt and toppings and pay by weight. We had never been here before, and I should have known better.

Usually when going somewhere new, we prep Jacob and explain what we will be doing, what it will look like, what his role will be, that type of thing. Well, we have been out for ice cream hundreds of times, so I didn't give it any thought that this time would be different.

We walked in and checked out all the options. Ooooooooo........so many choices and Jacob was thrilled because they had his favorites, cookies and cream and brownie batter!! Plus brownies to put on top along with so many other favorite treats. What I should have realized was Jacob was viewing this as an ice cream buffet! He didn't understand that he would be getting one cup and it wouldn't be completely full. If you've ever been there, the cups are huge! I'm guessing they want you to overfill since it is a pay by weight place. Jacob decided on 3 flavors, and my husband helped him with the first. I'm getting my own yogurt, when I recognize there is a problem. Jacob is mad because he wants his cup filled. My husband is doing his best to explain, but I knew by the look on Jacob's face he wasn't even hearing him. So what does Jacob do? He runs. Out the door carrying his bowl of frozen yogurt.

Yes, my son is a runner.

When Jacob gets mad, frustrated, or scared, he runs. Sometimes he runs with wild abandonment with no turning back. It terrifies me. When he is fleeing, there is no rational thinking on his part. There have been times when he has ran straight out into traffic. His only thought at the time is to get out of whatever situation is making him uncomfortable. I remember at the age of two we had taken him to the local farmer's market. Suddenly we could hear the train coming. At the time we were just starting to be in tune with Jacob's quirks and fears, so we were caught off guard when he took off running. Except he wasn't running away from the train, but right for it! He was two and had no idea where that noise was coming from, he just knew he had to get away. So we have learned from experience to be ready to bolt at a second's notice. Last year at the beginning of baseball season, I think I was chasing him almost every time he got up to bat. If the crowd cheered too loud, or if he got out, or if he didn't get as big of a hit as he wanted, or if my husband didn't throw him a good pitch, Jacob would run to first base and keep on going. There I was chasing after him, yelling for him to stop, and praying he would stop before getting to the main road or I ran out of breath. Thankfully by Fall Baseball Jacob had outgrown most of that. I'm thinking I may need to start training for this upcoming baseball season just in case he decides to start running again.

These are the moments I hate Asperger's. What should have been a fun night, had turned into anything but. As everyone in the yogurt shop is watching my husband and son outside the window, I am trying to clarify to the server that Jacob was upset and would be back in just a moment. I consider telling him about Jacob, but am lacking the energy at the moment to explain my son. I can tell by his face that he is as unsure of the situation as the other people in the shop. No, we are not frozen yogurt thieves. We don't hit a new ice cream joint each night and run out without paying. My son has Asperger's. And ordinary things are far from ordinary in our life. Next time maybe we will just stick with the DQ.

Tuesday, February 7, 2012

Finding Strength

It's funny how conversations come back to you that at the time really held little to no significance. While in college, I vividly remember having a conversation with my high school best friend and then college roommate. We were both elementary education majors at the time, and we were discussing special education. I remember my friend telling me that she thought she would like to teach special education. I on the other hand adamantly said there was no way I would have the patience for it. Our professors were encouraging us all to consider special ed because at the time there was a great need. I refused. I had little to no patience.

Fast forward a few years. College is over and I no longer see my best friend each day. She had started a family and was pregnant with her second child. While pregnant she is in a horrible car accident that almost takes the life of her precious baby. Her little girl is born very early with cerebral palsy.

That was probably 15 years ago. Since then I have admired my best friend's strength to overcome all adversity. I have been envious of her no looking-back positive attitude. Her daughter has had countless hospital stays and surgeries, all which my friend takes in stride. Her daughter is in a wheelchair and has very limited speech. My friend's life has been far from easy, but never ever have I heard her complain, or take a why me approach to life, or why my daughter. Never has there been a pity party. Instead she has looked at each day as a gift from God. So many times I have thought back to that conversation we had so many years ago and thought, " God knew that she could handle this situation. He knew that she was strong and courageous. He knew what he had planned for my friend way before that fateful accident.

It's just recently that I have started to look at that conversation from my perspective. God didn't give me a son with Asperger's to teach me a lesson. God doesn't work that way. He gave me Jacob to show me MY STRENGTHS. I think God said, "Yes, you are patient enough for this beautiful child, and he needs a mama just like you!"

So I leave you with a quote. This is one of my favorites that has hung on the side of my fridge for over 13 years since my husband and I were first married. It has moved with us from apartment, to college married housing, to more apartments, to our first home. So many times I have read this for clarity when I feel that life is too much. When I start to get that "why me God?" feeling. When I forget to look at each day as a gift.


Answer to Prayers

We ask for strength and God gives us
difficulties which make us strong.
We pray for wisdom and God sends us problems,
the solution of which develops wisdom.
We plead for prosperity and God gives us
brain and brawn to work.
We plead for courage and God gives us
dangers to overcome.
We ask for favors and God gives us
opportunities.
This is the answer. 

--Author Unknown


My friend probably does not even remember that conversation we had so many years ago. I've never mentioned it until now. Nor does she know how over the years I have drawn my own strength from watching her's. I haven't ever told her, and I should. She's an incredible person, and I love her dearly.