Monday, December 10, 2012

A little piece of typical

The plans were in place. The stars were aligned. My husband had the day off work. The babysitter was lined up. The company Christmas party was a GO! A Saturday night spent enjoying ourselves among adults, eating free food and winning prizes...I could hardly believe that it all came together.

Then the phone rang.

The babysitter was sick. But her younger sister graciously offered to take her place. Which was fine with me and my husband...but Boo was devastated! It was about 11am when I told him there was a change in plans. We were supposed to leave at 5pm. I was trying to balance his need for advance notice of a plan change with his tendency to obsess and fret over the change if given too much time to think about it. We were in the car running some errands. Tears streamed down his little face and my heart was breaking. I HATE that something so seemingly simple can be so difficult for him to cope with. He kept repeating that he didn't want A to come, he wanted N. He said that it wasn't fair, and that he doesn't like it when plans change. He says changing plans is like breaking a promise.

Over the next half hour or more, he would calm down, and then ramp up again in cycles. He asked if Daddy could stay home with him instead. I told him Daddy was going to the party. He asked if Grams could come. I told him it was too late for Grams to be out. He said "It's too late for Mammo too, right?" Yes dear, and the tears came again. Eventually he stopped worrying about it, and started watching the clock. He managed to get excited about A coming over. When she arrived, he took her to his room and they started playing with his hotwheels. By the time we left, he was too involved with the babysitter to even say goodbye.

I warned the sitter that bedtime could be difficult without me there, that he is very resistant to going to bed without his mom. He usually won't even go to bed for Mammo! I told her to try, but not to worry about it if he really fought against it. I was prepared to find a very tired little boy waiting for me at the end of the night. Daddy and I had a wonderful time at the party. I enjoyed being out with my sweetheart for the first time in a long while. We arrived back home at about 10:30 and found our sweet Boo sound asleep in his bed! I was astounded. I asked A if he had given her any trouble and she said that everything went great. She said he didn't want to go to bed at first, but she told him it would be very late before I got home. He finally agreed to lay down, telling her "I don't want you to lay in my bed with me because you're not my mom." She checked on him about 10 minutes later and he was sound asleep. And it was only about 45 minutes later than his normal bedtime.

Sunday morning at church, both of A's parents asked me about the evening, and I told them that they are not allowed to move away at least until Boo is grown. It feels pretty amazing after five and a half years to have an actual babysitter (two, even!) whom I can call on when we want to go out, and not feel like I have to depend solely on the generosity of family members. We've picked up one more little piece of "typical" on our road through Boo's life. Nothing else needs to show up under the tree to make this one of the best Christmases ever for me!

Tuesday, November 6, 2012

Say Hey!

Today is a big day, friends. Emotions and passions are running high on both sides of this year's vote. Sometimes when we feel so strongly about things that mean so much to us, it can cloud our vision of the overall big picture. I have seen so much political talk and posting, and so much complaining about political talk and posting...honestly, I'm just ready for it to be over with already! But I do have something to talk with you about that I feel is important.

I will not tell you how I am going to vote. (Though those of you who know me well can probably predict my vote with some degree of accuracy.) I don't want to know how you voted either. It doesn't matter to me. But here is what does matter to me: Please don't make assumptions about how someones vote reflects their personal opinions and values. It is unfair to make blanket conclusions about how I think and feel on certain issues based solely on which political candidate I support. For example, I have some dear friends who are devout believers in Christ and have a heart for His Church and His people, and who believe that the best reflection of how to love and care for others is through the democratic platform. I have other dear friends who are just as devout and have just as much heart for the same Christ, who believe the best reflection of how to love and care for others is through the platform of the republican party. It would be ridiculous for anyone to assume that a republican vote means that a person lacks love or compassion for homosexuals or victims of rape, for example. It would be equally unfair for one to assume that a democratic vote means that a person lacks faith or doesn't care about babies being aborted.

You can talk all you want about what your vote means to you, and what it reflects about you. But please have enough common sense and enough respect to realize that you do not know (unless someone specifically tells you) what another person's vote means to them, or what it reflects about their values and beliefs. Don't tell me what I think, tell me what YOU think. Don't assume that I must be deluded, misguided, or undereducated if I don't agree with your way of seeing things. Realize that people can desire the same end result yet have differing opinions about the best way to accomplish that result.

And please, please, PLEASE, for goodness sake, don't treat this election as if it is the greatest pivotal moment in all of history. Is it important? Yes. Does it matter? Yes. Should you vote? Yes. Will the win/loss of a particular candidate usher in the apocalypse? NO! Will the United States cease to exist if your candidate looses? NO! But do you know what? Even if it did...guess what? God still reins! Civilizations have risen and fallen throughout all of human history, and two things still remain: the human race, and it's Creator. We are going to be ok! God is in control, not Obama or Romney. Our immediate future is uncertain and I know that can be scary. But we should not allow our concerns to become our focus. Let's put our faith and trust in God, our ballots in our polling places, and our hands in one another's. Let's remember that we are all in this boat together no matter who takes the helm, and that the Lord rules over us all.

Most of all, please remember these words from one of my favorite songs by FFH:

However long our feet have walked on this world
We’ve all lived long enough to know
That sometimes life will go our way
And other times it won’t
But still I’ve got this joy inside of me
With each new dawn I do believe to

Say hey, it’s a good day
Even if things aren’t going my way
Jesus is Lord and I am saved
So, say hey, it’s a good day

Circumstance and situations change
You know life can turn on a dime
But there’s a constant hope and peace
That I have come to find
And it’s all because of who God is
And that He is alive and I am His, so

Say hey, it’s a good day
Even if things aren’t going my way
Jesus is Lord and I am saved
So, say hey, it’s a good day

We are all as happy as we make our minds up to be
I have just decided that nothing’s gonna take this joy from me

Say hey, it’s a good day
Even if things aren’t going my way
Jesus is Lord and I am saved
So, say hey, it’s a good day

Tuesday, September 4, 2012

Boo's Menu

As most of you already know, self-restricted diet is a huge issue for Boo, as well as many other spectrum kiddos. He can be very hungry and begging for food, but everything we suggest gets shot down. One day, out of pure exasperation with listing the options for the hundredth time, I wrote down all the items that Boo is typically willing to eat that we have in the house. I handed it to him and told him he could choose any item from the list. He took a quick glance and chose a food. Just like that. I was blown away. Boo is so much better with visual communication than verbal, I guess this was just easier for him to process. Since then, I keep this list handy at all times. He has even learned to ask for it. It cracks me up to watch him peruse the list of foods and choose an item, often by pointing to it, as if ordering from a restaurant menu.

Friday, August 31, 2012

Boo, Moses, and the Gospel

Last night at bedtime Boo and I were reading bible stories. We are reading out of two different bible story books right now. One is very simplistic and one is closer to the original language of the bible. From the first, more advanced one we read part of the story of creation. When we got the the part about the seventh day, and how God made it holy, I stopped to check for understanding. He did not know what the word holy means. I explained that it means set apart, made different than the others. Then I asked him what was different about the seventh day. I got the blank stare. Then I rephrased the question.
"What did God do on the first six days?"
"He made all the things in the world."
"And what did he do on the seventh day?"
"He took a rest."
"So what is different about the seventh day that makes it holy?"
"God rested."

We moved on to the other story book where we picked up from our previous reading about Moses. We read about Moses growing up in the palace, then running away, then seeing the burning bush. When God spoke to Moses he told him to remove his shoes because the ground was holy ground. I paused again to check for understanding. Again, we discussed the meaning of the word holy. I asked him what was different about that particular ground where Moses was that made it holy. He thought and studied the picture. His response was "It was made of sand instead of sidewalk." I bit my lip, stifled my giggle, and continued.
"Well, that's one thing that's different. But what special thing happened in that place?"
"God talked to Moses."
"That's right!"

We also talked about how we would feel if God showed up and talked to us. Then we went on with the story. When Moses approached Pharaoh (In this book described as "the mean king") and told him that God said to let the Israelites go, it really bothered Boo that the king said no. He couldn't understand why the king would be mean to the Israelites, why he wouldn't listen to God. His tender heart shone through as he pointed to the picture in the book and traced his finger down from the top of the page onto the face of the angry looking Egyptian king, and he spoke the simplest, most sincere gospel message I think I have ever heard. "He needs God's love."

Friday, August 24, 2012

Boo's First Day of Kindergarten!

The night before Boo's big day, I was a nervous wreck. Ok, the whole day. Ok. Week. FINE....MONTH! Sheesh! Thankfully, I was the only one showing signs of anxiety. I packed up his lunchbox with a large variety of items, not knowing what he would be willing to eat come lunch time. I sent peanut butter, sandwich crackers, graham crackers, fruity cheerios, a granola bar, fruit snacks, a blueberry muffin, yogurt, and a Capri Sun. I set it in the fridge and went to bed...and tossed and turned.

The next morning, when it was time to wake him, he did not want to get out of bed. He informed me that he did not need school, and he would just sleep all day. This is the same kid who woke me up at 5:30 am just the day before! I tried everything I could think of to motivate him...finally I stumbled upon just the right thing. I reminded him that his backpack was filled with his supplies for school, and I told him that one of the pencils I had put in his pencil box had SPIDERMAN on it! I invited him to come with me and check out the pencil, and that was all it took. We looked at all his pencils, repacked his backpack, and put on his favorite Spiderman outfit. After that, it was all I could do to keep him in the house long enough to get my shoes on and grab my keys. He was on his way!
It was a thirty minute drive to his school. My stomach was churning. About halfway there, he suddenly announced "I don't want you there." I assured him that I wasn't planning to stay, just to walk him to his classroom and get him settled. He rebuffed me. "I know where my classroom is, Mom." So I just told him that I needed to talk with Mrs. W and he was satisfied. We arrived at the school and Boo marched right in the front door without even checking to see if I was with him.

Just inside the door sat a lovely lady, Mrs. M, whose sole responsibility at school is to greet each child as they enter, give them a hug and greet them with the heart-felt words "God loves you and so do I, have a great day." She has been doing this as a loving volunteer for many years. She is 90 years old, and the kindest soul. Boo seemed a little distrustful of her eagerness and turned down the offer of a hug. But when she told me that she offers them to parents also, I gladly accepted. I told her I really needed one that day. And I did!
Each year Mrs. W chooses a different theme for her classroom for the year. This year's theme is Whales: We Have a Loving, Everlasting Savior. There are whales everywhere! Beginning here, outside the classroom, and all over the place inside. It looks totally awesome. We entered the room and Boo began to wander around happily. He was checking everything out, just doing his own thing. When he saw the reading area with the big pile of pillows, he could not resist diving right in.
He gazed longingly out at the playground.
He and Mrs. W investigated how dark it is inside the bathroom if you close the door without turning on the light. (She was trying to tell him the importance of remembering to turn on the light switch outside the bathroom before entering, and he assured her that he could see in the dark because of his great eyesight. LOL)

I finally got him focused on the job at hand. Together, we found the desk with his name on it, and filled it with the school supplies from his backpack. When he first opened the top of the desk, his eyes widened and he exclaimed "This is my secret lab! This is where I keep all my things that control my robots!"
Once this was accomplished, there was no putting it off. It was time for me to go. I had to leave my baby in his kindergarten classroom for an entire day. I took a deep breath, gave him a kiss, and said goodbye. I walked to the door, looked back across the class, and choked back tears. There sat my Boo in his big kid chair at his big kid desk in his big kid school. I was SO NOT READY for this! But he was. It was clear he was ready. He barely took notice that I was leaving. I walked out into the hallway and found some other mothers and staff out there who chatted with me. I wanted to run out the door and let out the sobs that were pushing at my throat. Another mother of a child in Boo's class joined the conversation, and she asked me if I was still in the room when Boo made his announcement. Mental head slap...oh boy. I said I hadn't been, and asked what he said. She told me he had stood and informed the class that whales are actually called orcas, and that they are really a type of dolphin. Yep, not even five minutes into the first day and he was trying to lead the class. That is the Boo that I know and love!

Soon it was time for chapel. The students begin the day with chapel every Wednesday, and the parents were invited to join. I waited in the lunch room so that Boo could go with his class and not be distracted by seeing me. I came into the sanctuary and he was seated so still and quietly with his class that I had to do a double take.
I sat in the back and swallowed back tears as they began the morning by singing these songs:

At the end of the chapel service, the children were asked to meet out front for class pictures. Oh boy. I did not expect this on the very first day. I had not prepared Boo. He hates having his picture taken. He almost always refuses to cooperate. I hung back and watched him go out with his class, hoping that going with the crowd would work in our favor. Sure enough, by the time I got outside, he was posing pleasantly with the other kids. His combined kindergarten/1st grade class is composed of eight girls and two boys. They are all totally adorable. After the class pictures I hugged him one more time and wished him a good day. Then I told him to go back to class with his friends. He walked down the sidewalk hand in hand with Mrs. W, never so much as glancing back toward me. I sighed. Then I thought again of this sign hanging just inside the front door:
And I knew that my Boo was in exactly the right place.






Tuesday, August 14, 2012

Say What, Now?

So, I had a doctor appointment this morning. Because it was a new doctor for me, they asked me a lot of different questions about my medical history and that of my family. None of it was surprising to me. That is, until they asked if anyone in my family had any birth defects. I thought about it for a moment and said I couldn't think of any. The nurse then began to name a long list of possible conditions that would belong in this category.

Cystic Fibrosis...Sickle Cell...Down Syndrome...Cerebral Palsy...Spina Bifida...Autism...

Back. The. Truck. Up.

Autism? As a birth defect? Are you serious? This completely threw me for a loop. I stammered a bit. Well, yes, there is autism in our family. But never in a million years would I have thought of it as a birth defect! Which is exactly what I told the nurse. It was an awkward moment, and she tried to offer an explanation, but I stopped her. I told her it was ok, I just don't think of it that way. Frankly, any explanation she would have tried to give me would have only made it worse.

My son is not defective. He is not damaged. He is not flawed. He is not less-than-whole. He is uncommon. And the nature of his uncommonness presents challenges to him and to those who interact with him. But just because we don't fully understand autism doesn't mean that it is a defect! Who knows, perhaps it is an evolution! Perhaps, as my pastor suggested just a few days ago, it is a glimpse into the wonder of God's creation. He proposed that autism gives us a peak into the vastness of the capacity of the human mind as it was originally created, before sin entered the world and fouled up all manor of things.

It is our nature to want to categorize things. We want everything to fit into neat little patterns and hierarchies. When everything fits into its proper pigeon hole we feel that we understand where we stand. We feel that we are in control. But this is an illusion. We can't control life. We can't contain misfortune. We can't bottle difficulty. And in trying to do so, all we manage to do is build walls between people. We tell our children there is an "us" and a "them." Anyone who is not like me is "other." Anyone who doesn't do things like I do is "defective."

Well, let me just set the record straight. My son is not defective. He is not other. He is not wrong. He just is. He doesn't need to be fixed. He needs to be loved and understood and supported. He needs to be valued, encouraged, and protected.

Tuesday, July 10, 2012

Family Reunion

We have been home from our big trip to the family reunion for over a week now, and I've not said a thing about it. I have wanted to. But it is just so big. There is so much. My heart is so full. I don't know how to tell you or where to start. Boo was amazing. Awesome. Incredible. But what I saw last weekend was that he comes from a deep and rich background of amazing, awesome, and incredible. The time we spent there was fabulous, partly because I know Boo, how far I can push him, and when to stop pushing. Partly because Boo knows me. He knows he can push himself, and that his mom will always be there to run back to if he goes too far or gets too uncomfortable. Partly because Mammo and Grams are phenomenal. They know how and when to support, and when to back up. They can step in and do the explaining while I step out and do the calming. But here's the real key. Here's what made that weekend go from successful to incredible. My entire family is loving, accepting, happy, and eager to understand and help. Some of them already have a pretty good grasp on what autism looks and feels like, and some just got their first introduction. But every single one of them without exception gave me the distinct sense that they wanted to get it. They wanted to try. They wanted to help, to encourage, to understand, to connect. They didn't get scared or intimidated. They didn't ignore us or leave us out. They were oh so gently inclusive. Encouraging Boo without overwhelming him. Loving him without smothering him. Graciously giving him space and time when he needed it.

I have long said that my family is the stuff that soap operas are made of. We jokingly say that we put the "fun" in dysfunctional, but it is achingly true. There isn't a drama, a crisis, a breakup, a makeup, a trial or a joy that some member of my family hasn't been through. We're messy, we're sticky, we're crazy, and we drive each other nuts. But let me tell you something about my family; when it comes to love, we have the market cornered. There isn't anything we can't love each other through. No one can mess up badly enough, be emotionally screwed up enough, or behave badly enough that we stop loving them and supporting them. As a family, we are not defined by our missteps and mishaps. We are re-shaped by them. But we are defined by our recoveries, our victories, and our triumphs. Sure we get irritated with one another, we get angry, some of us go long periods without talking. But we get past it. We move on. We realize that we aren't responsible for each other and we can't change each other, so we might as well just enjoy each other. So even though some of us drink too much, and some of us talk too much, and some of us laugh too loudly, and some of us roll our eyes too frequently, and some of us can never arrive on time...we can still all get together and sit in a huge circle on a big stone patio and sing Amazing Grace together. We accept each other. We value each other. We love each other. This isn't something new we've started. It's woven into the fabric of who we are as a family. It's not just what we do, it's who we are. So dealing with Boo, learning how to be with him, how to make him comfortable, how to include him...it was second nature. It was seamless. I shouldn't have been worried leading up to the trip, and I shouldn't have been surprised by how it turned out.

There are so many small stories encompassed in the larger one. So many special moments. Difficult moments that we navigated with the gentle loving help of the family, and amazingly victorious moments facilitated by the very nature of their love. They made my Boo feel comfortable in their midst, despite the fact that he was in a strange place, surrounded by strangers, and following nothing at all resembling his normal routine or schedule. He soared. And the palpable love and acceptance of everyone who was there helped give him the wings. I would like to tell you all the little things that happened. For now, to attempt that feels overwhelming. So I will try to put the small stories in subsequent posts for you. Today, I'm still just marveling at the joy of the entire experience. And I am praising God for giving me the phenomenal family He did. I am very blessed.

Thursday, July 5, 2012

Independence Day Highs and Lows

Overall, we had a very happy fourth of July. We hope you did too. This morning we ran a few errands and hit the fireworks stand, where Boo picked out several likely looking explosives. We spent the afternoon playing and baking. Then in the early evening, we headed over to Grandpa's house for the weekly family barbecue. It just so happened that this fabulous holiday fell on our regular barbecue night, so my dad decided to go all out.
This is a half-scale replica of a civil war cannon, made by my grandfather

When I was a child, my grandfather and my father belonged to a club which had as one of its activities, regular themed camp outs called rendezvous. At a rendezvous, you camped with only clothing and equipment that would have been available to early Americans before a specified date. (which date I am uncertain of, precisely) With the notable exception of coolers with food and ice, and cans of beer. LOL I remember these events with great fondness. My cousin and I were probably around ages 4 and 6, and our grandma sewed us special dresses and bonnets to wear. We called them our Little House on the Prairie dresses. There were interesting characters, all manor of tents, fascinating clothes, and horses. I remember what a treat it was to walk to a neighboring tent where a friend of my grandparents sold two lemon drops for a penny. I remember my grandpa, Dad, and my uncle looking so handsome in their outfits. I remember the tomahawk throwing competitions, black powder rifle contests, and the highlight, cannon shooting competitions. I am told that Grandpa never lost a competition in which he entered the cannon pictured above, which he built himself. I remember the thrill of the cannon being shot. The excitement, the reverberation of the shot vibrating in my chest, the smell of the gunpowder, the waft of smoke. My grandfather suffered a massive heart attack when I was quite young. By the grace of God he survived, but he was forced to give up a number of activities he loved, including the rendezvous. That cannon hasn't been shot since 1986...until today!

When Dad announced last week that he had decided to shoot the cannon for the fourth, my cousins and I were instantly transformed into a bunch of eight year olds. I have been looking forward to this day ever since. But in the back of my mind there lingered a touch of apprehension about how Boo would react. I arrived at Dad's house a bit early to see if I could be of any help. He got up on a ladder and pulled down a large plastic back from the storage area in the top of his shop. He passed it down to me, and I peeked inside.


I looked in and there were Grandpa's rendezvous hats. It took me by such surprise. Dad hadn't told me he was getting them out. It was a great joy, but tinged with the pang of sadness. My grandpa left this world six years, one month, and one day ago. I miss him so very much. Looking in that bag, it was like he was with us again in a way. My heart jumped and I had to choke back tears. Happy tears, grateful for the wonderful memories he left me, with which to remember him. Soon the rest of the family arrived, and my cousins and I each chose a hat, and wore it the rest of the evening, in the spirit of the day.

When our dinner was done, we all headed out to gather around the cannon. We listened as Dad reviewed the safety rules and procedures. He called for the "powder monkey" and my youngest cousin did the honors. The steps were explained. First, a long stick with some material on the end (what looked like maybe wool? I didn't ask.) was dunked in a bucket of water and passed down into the cannon barrel for a "wet swab." Next, another stick with a sort of iron spiral on the end, known as the "screw" was stuck into the barrel, to pull out any particles that may have remained there from the previous shot. Then another wet swab. Wearing large fireproof protective gloves, the powder money holds the shot (a measured amount of gunpowder wrapped in a cone of aluminum foil of specific diameter) at the end of the barrel, and the rifleman pushes it to the back of the barrel with another stick-like instrument. (These all probably have technical terms of which I am unaware) Then, the firing thing (which I did know the name of earlier tonight, but have forgotten) is inserted into a tiny hole at the top of the barrel. When the firing thing is struck it creates the spark which ignites the gunpowder. Grandpa used to have a mechanism devised for doing so with the pull of a cord. That mechanism has gone missing in the long years since we last fired the cannon, so there was a bit of improvisation. Firing the cannon by hitting the top of it with an aluminum baseball bat might not be the most authentic, but it's a heck of a lot of fun! So we were all set to blow the first shot. I called Boo to me and covered his ears, and we let him do the countdown so that he knew exactly when to expect the noise and could feel in control of it. BOOM! Boo's eyes lit up, he smiled ear to ear and shouted "Do that AGAIN!" I was totally floored, and absolutely thrilled. He remained for the next five shots, holding his ears and providing a countdown for each. My dad, my uncle, and each of us cousins took our turns "at bat." It was exhilarating, and I know my grandpa would be so proud of us for putting his cannon to use once again. And for instilling the love of it to the next generation.
My aunt caught this amazing shot of my turn to fire! How cool is that?


After that, it was back to more traditional forms of Independence Day fun. My cousin introduced Boo to her favorite kind of firework, snakes! He really enjoyed them. He laughed and said they look like poop. Leave it to a five year old. LOL
The best part of snakes, apparently, is crushing them to bits with a stick when they are done.


At one point, Boo asked me how to spell Grandpa. Later I found this written in the sand. It doesn't show well in the picture, but it was awesome!

I also introduced Boo to colored smoke balls and poppers, both of which were a big hit. At dusk we broke out the sparklers. As soon as Boo's was lit he threw it on the ground and ran screaming. Once we showed him how to work them he loved them, but refused to hold them. But my cousins and I acted like the big kids we are at heart and had great fun with them. Then the barbecue broke up and we headed home to shoot off our own fireworks. Boo became even more excited as we drove into town and he saw all the bright sparks in the air all around. He kept talking about how much he loved fireworks and how pretty they are. We got home, got out our bags of explosives, filled our emergency water bucket, and waited for my cousins to arrive. But as the fireworks all around town began to reach a crescendo, so did Boo's anxiety. With every report, every squeal, every crackle, he grew more tense and fearful. Covering his ears was no help. We managed to get through only one of our fireworks before he was completely overwhelmed and ran crying into the house. I went in and set him on a chair in front of the large picture window, where he would have a view of our fireworks without the intensity of the noise. This lasted a little while, but eventually he lost it completely. I had to take a break and come in with him. He was running through the house shrieking, not able to find any place where the sound of the explosions outside was completely muffled. After a great effort, we got him settled in his bed, under his weighted blanket, with his leap pad game to drown out the other noises. He was still agitated, but he could tolerate it. I went outside with my cousins and we finished blowing stuff up, and then said good night.

It took me a while to quiet Boo enough for sleep. He was antsy and agitated, and every little noise was like poking him with a needle. Finally exhaustion took over and his eyelids fluttered closed. I lay beside him watching his precious face. I felt elated at all he had accomplished in the day. I mean, the kid watched a cannon being shot. A freaking CANNON. Multiple times. And loved it! That's HUGE in our world. But the key was that it was one shot at a time, he knew when it was coming, and he was given some control over it. When it came to the fireworks, the sounds and sensations were coming from everywhere at once. There was no reprieve, no time between explosions to reset himself, no way to know when or from where the next shot would come. And the joy of sharing this wonderful day with my son was also pierced with frustration. Not because I was frustrated at him  or by him. Rather, I was frustrated that something that is typically such a simple pleasure of childhood would, for him, have to be a source of pain and anxiety. And I wondered if next year would be a little better. In the end, though, I can't escape the fact that this day was a tremendous success. 



Tuesday, July 3, 2012

My Mathmatician

Math is something that I have always loved. It always just came so naturally to me, like second nature. I still love doing math. Nothing thrills me more than for one of my younger cousins or my friends children to call me up and ask for help with their algebra. I love it because it is rational and concrete. There is no gray area, no room for personal interpretation. There is one correct answer and there is a way to find it. There is no analyzing, no conjecture, no supposition. Apparently, my son shares this love and natural ability with me.

By the time his preschool year was over, he was already doing basic addition. He picked up the concept easily, and was a pro at adding single digit numbers together. At some point, I had introduced him to the concept of subtraction, but didn't really push it too much. Then, in preparation for our recent family reunion trip, I bought him a new game for his leap pad. The Penguins of Madagascar, Operation Plushy Rescue. The packaging said that the game works on skills of animal facts, patterns, more than, less than, addition, and subtraction. The basic game play is similar to old school Nintendo. The game play is punctuated with puzzles to solve and questions to answer. He played the game incessantly for two days, never once asking for help with any of the challenges. In no time flat, he had mastered subtraction, addition and subtraction involving two digit numbers, and even basic algebraic equations! (like 9+?=10) I didn't even realize how well he was doing at first.

Last night at bedtime, he was quizzing me with math problems, which is one of his favorite things to do. I was quizzing him back also. I asked "what is fifteen minus two?" Without hesitation he answered "thirteen, because it takes away the fifteen and the fourteen." Wow. He doesn't use fingers, doesn't count in his head, he just answers. He knows it by rote, yes, but he also gets it. He understands the relationships between the numbers. There was more evidence of this today when we picked up his friend Little Britches. In the car on the way back to our house, he was showing his new game to his friend. LB got to a point in the game where he needed to answer a math problem. It was subtraction. The game asked what is six minus three. LB asked what does minus mean? Boo answered him, "it means taking away something." I further explained this way. "If you have six of something, and you take three of them away, how many would you have left?" Boo responded, "three, because three plus three equals six."

Not only am I stunned that he has attained this level of understanding before he even enters kindergarten, I am blown away that it all has just come easily and naturally to him. It's not something he's been purposefully taught. He just picked it up. Just the way he did letters, numbers, letter sounds, and reading. The kid is scary smart. I'm not sure I'm going to be able to keep up with him by the time he's in sixth grade!

Tuesday, June 26, 2012

Someone Who "Gets It"


I got a phone call today from someone very dear to me. I have known this woman since we were children. We get to see each other once, maybe twice a year. She has a special needs child too. Her child's condition and needs are different from my son's, but as most of you know, there are certain aspects that are common to all parents of special needs kids.

There wasn't any one particular point to her call. She began by asking me about Boo's recent difficulties with "the itches." She said that she had described the situation to her child's therapist and asked for any insight they may have. And though the therapist hadn't offered anything concrete, just the fact that she had thought to ask for our sake moved me deeply. We talked at length about the various things we face and deal with because of the needs our children have. We talked about doctors, coworkers, friends, and family members. We talked about how we can be so grossly misunderstood as mothers, and how our children's needs can be misunderstood also. When we decline invitations to restaraunts, bowling alleys, crowded places and outdoor events because of our children, we are not being selfish, overly protective, or attention seeking. We know our children, and we know their limits. We know what sort of things can trigger problems for them, and we will remove them from those things before the problem makes itself evident to others. Just because you can't tell what the reason for our actions is, doesn't mean we don't have one.

We also talked about some of the comments and questions we receive from others who, for all that they are well meaning, are nonetheless ignorant. People who think they know more about our child's needs than we do, or who compare aspects of our children to themselves or to their own typically developing children. She told me of some of these comments she has recently dealt with. I told her that what sucks for me is that people have such good intentions. It sucks because when they make comments that are rude, ignorant, insensitive, or just plain wrong, I feel like getting all up in thier face and giving them a piece of my mind followed by a good sqeeze around the neck...but I can't...because they mean well.

But what really hit home for me during this phone call was that she said the reason for her call was not to discuss any particular person, issue or incident, but rather she just wanted to talk with "someone who gets it." Boy oh boy do I ever identify with that feeling! There are a great many people in my life and Boo's who love us, who know him and handle him well, who have educated themselves and who have walked this journey by my side from day one. And I am forever thankful to God that these people are in my life and his. But they don't get it. Not really. They try. They want to. They come really, really close. But the fact of the matter is, they can't get it. He's not their child. They can't get it any more than a person who has been blind from birth can really understand color, or someone who has been deaf from birth can comprehend music. It's something that you have to live, to experience, in order to really, truly, GET IT.

This does not mean that there isn't value in awareness. We still need to work to help the general public understand. With education comes acceptace, kindness, and empathy. With awareness comes a world in which our children have the space to just be who they are. But people who don't live it will never truly get it. And that is why we need each other. That is why community is so important. If you are new to this journey, I urge you to build a support system within the community. Join a support group, go to an online forum, build a facebook family, whatever it takes to create a bond with people who get it. Because one day you will need to make that phone call. And another day you will receive that call. (or email...or private message...) And in both cases, you will be so very very thankful that you have each other to whom you can reach out. To paraphrase Woody from Toy Story: "Special Needs Parenting Buddy...if you don't have one, GET ONE!"

Monday, June 18, 2012

Never

Sometimes a thing can be eating away at you, fraying you around the edges, making you uneven, and you don't quite realize it. At least not on a conscious level. Not until it compromises enough of your delicate and intricately woven emotional defense structure. And suddenly you find yourself bawling your eyes out as you drive down the road past fields and cows and tree rows. You wonder why you're falling apart over the loss of what you never even actually had. But there it is. Hitting you over the head like an acme anvil falling from the sky. You've tried to lock it away in its own sacred special corner of your heart all by itself. But it refuses to stay. It seeps out little by little, and colors every other part of your life and experience. You see things as they are, but you simultaneously see them as they might have been if only...  You're walking around with an invisible wound that refuses to heal, which is all the more painful for the fact that no one else appears to remember that you were ever wounded. And yet, you don't truly want it to heal because the pain is all that you really have left of it.

I never knew if you are a boy or a girl.
Never knew if you have straight hair or curls.
I never got to rock you to sleep.
Never brought you home to keep.
I never held you in my arms.
Never fell captive to your charms.
I never kissed your tiny head.
Never laid you in your bed.
I never heard your precious laugh.
Never gave you your first bath.
I never named you.
I never even met you.
But I want you to know that I will never forget you.

It Is What It Is

I follow a lot of other blogging/facebooking parents of spectrum kiddos. For the most part, they help keep me sane. They educate and inform my opinions and ideas. They expand my horizons. They give me support. They give me hope. They show me what is possible, where we can go in time. They show me that it won't always be like this. They also show me that it's OK to be real and to say "this sucks." They show me that I'm not alone in either my experiences or my feelings about them.

I try really hard to keep the overall vibe of this blog positive. I don't want to come here only when it's hard and I need to vent, neglecting the times when it's awesome and I can brag. I want this to be a place that reflects our life: full of love, usually happy, often difficult, sometimes heartbreaking, but always...ALWAYS worth it. The last few weeks it's been a little harder to keep my balance. And because I follow those other parents...I realize that I'm not alone. It seems the overall trend in the community right now is "this is freaking tough." And little wonder...for most of us, school recently let out for the summer.

Today was the first day of Boo's swimming lessons. He was showing token resistance to the idea ever since I wrote it on the calendar at the beginning of the month. But he gives token resistance to almost everything. I just ignored it and didn't push. But when the time came this morning, it got really ugly really fast. He is scared of the very idea. I believe the real core of the problem is that there is absolutely nothing in his experience that even comes close to this, and he has no idea what to expect. When he doesn't know what to expect his anxiety goes through the roof. He bawled and refused to leave the house. Reasons he gave were mostly along the lines of being afraid that he would go underwater. No matter how much I assured him that they do not have you go underwater, we stay in the shallow part, Mommy will be right there to keep you safe...nothing helped. He just couldn't visualize it and he was terrified. I never insisted that he had to go, but I kept trying hard to encourage him to go, trying to help him understand what it would be like and that he would be safe and have fun. He would hear none of it. He kept begging to watch TV, play on computer, or play with my phone. I wouldn't let him have any of those things if he refused to go to swim lessons. That brought him to full blown meltdown. Not quite the nuclear variety I had seen in recent weeks, but a meltdown nonetheless.

And as tends to happen, Boo's meltdown brought on one of my own. He flung his body at me, pushing, swinging, hitting, kicking my body and shrieking high pitched sounds. I removed myself from his clinging limbs, which is no small feat, and walked to another room. I picked up my phone and started typing out a text to my mom. I wasn't three words into it before I couldn't see the screen for my tears. "I f*ing hate this Mom. I hate autism and I hate the agony and anxiety it puts my kid in. He shouldn't have to fight so hard to just BE. It's so damn unfair. I just want to rage but there's nowhere to direct it."

And even as I typed it, I felt like I was betraying my child and the entire autism community. I thought of all the blog posts and facebook comment threads I've read about how people would never dream of taking autism away from their child if such a thing were possible. And I know that its so much a part of who he is, and that I need to love and honor and celebrate it as such. But there are times, there are days, when if I'm being really brutally honest...with myself as well as with all of you...I have to admit that my real feelings are more along the lines of "autism can kiss my a**." And I have vowed to be honest here. Not that I'll tell you everything, but that I will keep it real. I won't gloss over the hard stuff, nor will I sensationalize it. Because the only way we can move others from pity or intolerance to understanding, is to be real. Because as my husband always reminds me, "it is what it is." There is no need to try to excuse or qualify anything. It just is what it is.

So today, yeah, autism sucks and I hate it. Not because it is hard for me, though it can be. Not because I have trouble getting Boo to do what he needs to do, though I can. Not because I have to adjust my hopes and dreams for my son to reflect both his strengths and his limitations, though I do. I hate autism because it makes it so damn hard for my son to just BE. I hate watching him fight his anxiety. I hate watching him writhe and rage when he can't stand the feeling of being in his own skin. I hate watching him try so hard over and over to be sociable with his peers only to be met with blank stares when they don't know what the hell he's talking about. I hate watching him instantly transform from joyfully blissful to terrified when assaulted by a sudden strange loud noise. I hate hearing him beg through tears "I just wanna go home" when he is home. Just as any parent, I hate seeing my child in pain.

And to be fair, there are ever so many more things that I love about his autism, and the person it makes him. But those just aren't making the highlight reel today. And that's OK. Those will appear in another post on another day, and hopefully it balances out overall. Because I promise you I don't always feel this way. But for now...it is what it is.

Wednesday, June 13, 2012

Pay No Attention to the Mother Behind the Blog


People in my "real life" and even some from online are apt to compliment me often on my parenting. They tell me what a great mom I am, what a great job I'm doing with Boo, how lucky he is to have me. At times, I've actually felt quite exasperated with his special ed team for telling me that I am already doing everything they would recommend, because that doesn't give me any new tools with which to work. It's nice to hear, but not practically helpful. I try to always accept such praises humbly and graciously but not to let it go to my head. But I am human, and apt to get a swelled ego at times. Especially when my efforts with Boo are particularly effective. When I am able to calm the tempest, solve the sensory puzzle, or impart understanding of a new concept I am liable to swell up a bit and pat myself on the back. But there is one small person with a big influence in my life who knows how to swiftly and effectively bring me off my high horse and put me in my place.

I have found myself sitting on the dining room floor bawling while Boo rages and writhes nearby, the popcorn strewn about that he spilled and refuses to help pick up seeming to mock me. I have found myself sitting on the bedroom floor while Boo sits naked beside me screaming, unwilling or unable to choose between the new swimming trunks with the drawstring he can't stand and a pair of regular shorts, but terrified that the friends waiting for him to join them in the backyard will give up and leave. I have found myself sitting in the living room bawling as Boo writhes in pain, refusing all attempts at comforting him, refusing to allow any of the things I assure him will alleviate the hurt. I have found myself sitting on the front porch bawling as he howls and screams in the front yard, giving the neighbors a dramatic display of what the ugly side of autism can sometimes look like. I have found myself sitting in the car in front of the local convenience store, my fifty pound five year old having a full-on tantrum in the back seat, then clambering into my lap and proceeding to beat me up and scream as though he were the one being attacked. I have watched the scornful, shocked, judgmental, and pitying glances from onlookers as I tried in vain to bring my child back to a state of self-control.



It is times like those when little Toto pulls back the curtain and reveals the faltering, stammering, feeble human behind the smoke and mirror show that was the Great and Powerful Oz. I feel like a fraud. Like a sham. Like I have no business writing this blog, or talking about autism as if I have any clue what the hell I'm doing. I feel stupid, ineffectual, impotent. I have no idea what I'm doing most of the time. It's all by the seat of my pants. I try to make it all look good on the outside, but on the inside I constantly feel like I'm screwing it all up. I don't understand him. I don't know what he needs. I don't understand how he feels. I can't even get him to do something so simple as to pick up some flipping popcorn he spilled on the floor. I feel like I'm failing my boy. My cherished, wonderful, beautiful little boy, to whom I would give anything in this world that could help him mitigate these challenges, if only I had it to give.




When he begs me to help him "figure out what to do" I ache inside, wishing I had the power he believes I do. And all I can do is hope, pray, and believe that all the tools he needs to help him successfully navigate this world are things he already possesses. I hope that, like the Wizard, I can help him find and use the tools he already has, and show him how to get where he wants to go.

Friday, June 8, 2012

Anniversaries, Cupcakes, Finances, and...Oh Yeah! Ryan Friday!

Overall, it's been a good week for us. Sunday happened to be the thirteen year anniversary of Boo's Dad and Boo's Mom saying I Do. :D We didn't do anything particularly special, although I did decide to order a pizza for supper so I wouldn't have to cook or clean up. The city in which we live has an event once a year called City Wide Clean-up. This is a week where you can put virtually anything at the curb and the city will pick it up and dispose of it for you. It is a big help for people like us who don't have a truck to haul large items to the dump. The only thing you can't get rid of is lawn/garden stuff like tree limbs. Inspired by this event, we decided to do something we've been putting off for a long time. We removed the nasty, stained, ancient blue shag carpeting from Boo's playroom. Thankfully, there was linoleum tiles underneath, so we don't have to be in any hurry getting the replacement carpet installed.

Later that afternoon, we took Boo outside to play with his new "pipes," an idea inspired by a fellow mommy blogger.

Monday was uneventful save for the hour that Boo and I spent on Skype with my BFF and her two children. Her daughter is the same age as Boo, and they just love making faces and showing each other their favorite toys.

Tuesday was a good day. I spent the afternoon baking cupcakes. I had a new awesome-sounding recipe I wanted to try for the family bbq. In the evening Boo asked to go to the park with the red slide. We spent a long time there, and he amazed me by climbing higher than ever before on all the playground equipment. He has always been afraid to go high in the past. Go Boo!

Wednesday was the rough day for me. It started pleasantly enough. I sat down at the table and balanced the checkbook and paid bills. Paying bills always makes my skin crawl. Without giving too much personal detail, I can tell you that it was disheartening. About an hour later, I received an email from an attorney whom we had hired last October to help us out with something. We'd had to borrow money from a family member for the retainer fee and in the end, the attorney fees exceeded that amount by several hundred dollars. We have still not been able to the remaining balance. The email was stating that the attorney was ready to file a suit against us for our failure to pay. I was able to make arrangements with him to make very small payments to keep it out of court, but the whole issue really opened my eyes. There are several family members we owe money to for personal loans and several creditors we owe also. We are not making any headway financially. My husband's new job is great, but we are barely keeping our heads above water. I had to pull my head out of the sand and face the fact that I must go back to work again. It cut me to my core. As much as it can drive me nuts some days being here at home with Boo, it is the most wonderful and rewarding thing I have ever had the privilege of doing. Giving it up feels like ripping the heart out of my chest. I spent a great deal of time crying.

Later, after I had discussed it with my mom and my husband and was feeling better, I set about making the frosting and finishing the cupcakes. It made me feel good to create something yummy and beautiful. The bbq itself helped too. It was so relaxing and fun to hang out with my family and to allow Boo to run around and play and wear himself out at Grandpa's house.

Thursday was wonderful too, as my mom came to visit for the afternoon. I hadn't spent time with her in so long! We had a blast, played, acted silly, and I helped her with some issues she was having with her computer. Boo was totally thrilled to have her here as well. I gave her one of the cupcakes to try and she was over the moon. She kept asking how much I could sell them for. I still have no idea. How much would you pay for one of these yummy pretties?
Cherry Limeade Cupcakes

And now, we have arrived at Friday. And you know what that means! Yep, it's "Special Needs Ryan Gosling" time! For more fabulous Ryan fun, click on the button at the bottom of this post and see all the other fabulous bloggers who are joining in. For my part, here's what Ryan had to say to me this week:

Oh Ryan, thank you. I just needed a big strong shoulder.


Why Ryan, you're making me blush!


You just never get enough, do you?

Click here to see all the other Ryans.




Have a great weekend everyone!

Monday, June 4, 2012

Boo is Weird

Yesterday afternoon Boo was starting to get restless and unhappy, so I suggested that we go to the park. He was elated by this idea. He said he didn't want to go to the park with the red slide (two blocks from home) but rather the one with the blue slide (other side of town...which in my town means about a three minute drive.) This was fine with me, as I prefer the park with the blue slide anyway. So we loaded up and headed out. But as I neared the park I cringed. The park with the blue slide is along side of the community building, which townspeople can rent for events. There were cars everywhere. Clearly the community building was rented for the day. The park was crawling with people.

We pulled up in front and I parked the car. I stared into the park. There were children everywhere. Boo saw them too, but he was elated. I was worried. I looked at the community building and there was a large banner draped on it announcing a family reunion. I cursed silently in my head. I surveyed the scene. I was weighing the possible outcomes of leaving vs staying and invading this family reunion. I decided that the latter was the lessor of two struggles and we exited the car.

Boo ran happily over to the blue slide, climbed up, and started chattering at the kids. I took a seat at a nearby picnic table under a shade tree, eyes and ears on high alert. I heard him at the top of the slide announcing "It's your friendly neighborhood Spiderman!" and I chuckled. But immediately after that, I noticed a confrontation taking place between Boo and an older boy. The boys face was contorted with some emotion I couldn't quite name. I was trying to figure out what was going on and at what point I should intervene. Boo was trying to avoid the boy, but the boy was following him, hounding him. I saw them put hands on one another's chests, but never in an overtly aggressive manor. Boo kept disengaging from the boy and going back to the other children, but whenever he would speak to them, the boy would get in his face again. Boo was trying to push him away, but the boy would take that as an aggressive move and put hands on Boo. I was incredulous, looking around the park for this child's parents. A moment later, I saw Boo walking away from the slide area, down the walking path which winds around the park. The boy was following closely behind, taunting him.

"Spiderman is STUPID!"
"NO he's NOT!"
"Yes he is. Spiderman is STUPID and all kids who like him are WEIRD!"

Ok, this is enough. Just as I made the decision that it was time to step in and stop this bully, they both put hands on one another and the real shoving match began. I barked at them, a loud and terse "HEY" that was heard across the park. The boy's head shot in my direction and he took off, ran to another nearby picnic table area. He was still close enough to hear everything I was saying. I addressed first things first.

"Boo, you can not put your hands on other kids like that. If there is a problem, you get an adult to help."
"But mom, that kid said that Spiderman is stupid."
"I know. And that kid can think whatever he wants. That's just his opinion. We like Spiderman and that's just fine."

The boy's attention was rapt. He was taking in everything that I was saying, he was staring at me. I suggested that Boo just ignore that boy and not talk to him or play with him. I said "He's being mean to you honey. He doesn't want to play or be friends. He just wants to be mean and hurt your feelings. I think you should just leave him alone, ok?" I wasn't sure how much of that Boo took in, because he was acting very distracted. But he took off and started making laps back and forth along the walking path.

I sat there so incensed I was practically vibrating. I looked around the playground at all the children of various ages. My mind was racing. This is a snapshot of a school yard. This is what my son is up against. He's going to be bullied. Everything I've feared is playing itself out. Oh my god, how can I protect my baby? After a while, Boo decided to re-join the children clustered on and around the slide. A few minutes later, he was lingering on the opposite side of the slide where I couldn't see him. I got up and peeked around. He and the boy were sitting side by side on the large PVC pipe that surrounds the slide area. I tensed. But their postures were relaxed, their voices low. Soon, Boo stood up with a huge smile on his face and ran toward me shouting happily "He's not going to be mean to me anymore, Mom. Yeah, he's sorry he did that, and I forgave him." I exhaled in relief, realizing that I'd been holding my breath.

The children all continued playing together. I downgraded myself from red alert to orange. I picked up my phone and started a game of solitaire. There was another boy there who had caught my attention. He was gangly and cute. He wore glasses and a buzzed haircut. He was trying to assemble some sort of club amongst the children. The others agreed to join, but when he tried to assemble a "meeting" it quickly fell into chaos, due in part to Boo's incessant chatter and insistence on being the center of everyone's attention. The boy in glasses tried multiple times over the next hour or so to assemble his "meeting" with similar results.

I had relaxed even more in that time. Boo was playing happily, if oddly, with the children. They were tolerating him in an amused, sometimes confused, fashion. I was sitting at a picnic table in the shade enjoying the afternoon. The boy with glasses walked up to me and stated matter-of-factly "Boo is weird." My heart flew into my throat. Crap, crap, CRAP! I thought to myself. My mind raced. He doesn't blend. He doesn't fit in. The gap between him and his peers is getting bigger, not smaller. What if it becomes a chasm? What if he can't overcome it? What if he can't manage meaningful friendships? What if he's always thought of as the weird kid? What if...what if...what if...

I pulled myself together and calmly asked the boy with glasses "what makes you say that about him?"
"Well, he says weird stuff. And when we ask him something he says stuff that's not even words."
"What is your name?"
"Mick."
"How old are you, Mick?"
"Nine."
"Well Mick, have you ever heard of something called autism?"
"Um, yeah. I mean I've heard that word, but I don't know what it is."
"Well autism means that someone's brain works in an unusual way. Boo has autism, so his brain works differently than yours. He thinks differently and sometimes acts differently. But that's ok, because he's just a kid who wants to play and have fun, just like you. He just wants to be your friend. Also, he's only five, so he's not as mature as you are since you're nine."

Mick took it in stride and didn't ask any questions. He sat down at the table with me and struck up a conversation, asking me if I liked animals. As we chatted, he rattled off an astounding number of facts about a large variety of animals. He spoke in large chunks of what I recognized as "scripts," probably from a book or books. I began to wonder if autism was a word he had heard for a reason. We chatted at length and he pulled me in. He charmed me and wrapped me around his little finger just as I've seen Boo do with adults a hundred times. I got quite an education also. We spoke at length and eventually we were joined by the first boy, the one who thought Spiderman is stupid. I learned that his name was Nate. As it turned out, he was a pleasant boy, if a little intense. Eventually, the conversation wound itself up and the kids moved on.

Boo asked me to push him in the big swing. It's a large swing designed to facilitate kids with disabilities who can't hold themselves up in a regular swing, but it's very popular with kids of all abilities. When he decided he was done swinging, instead of just getting out he made a game of it. He called out to Mick. Mick and Nate came over, along with a few other kids. Boo told them "I made a code for you. If you can crack the code you can get me out of here." (A variation of the Jack Bowser game on PBSkids.org) They immediately began blurting out possible 'code words' they thought might work, like "Spiderman!" But that wasn't the kind of code Boo had in mind. He was acting out a "script" from a video game. He launched into a long rambling explanation of how it was to work. He was going to pose a number of questions to the other kids and they had a number of chances to get a number of correct answers in order to win the right to free him from the swing. The numbers and the details were being constantly changed as the explanation went on. Boo would repeatedly back up, start over, change parts, add rules, and generally make what was essentially a simple quiz game sound like the most complicated ordeal in the world. The kids were gathered around him in a circle, and I watched them continually exchange questioning glances with one another.

Finally, Boo got around to posing the first question. "How tall is a giraffe?"
Mick asked him, "Do you know the answer?" Boo replied that he did not, and all the kids laughed. Mick inquired "How will you know if we answer it correctly if you don't know the answer?" Not understanding Mick's question, Boo simply moved on to the next item. I don't remember what he asked, but it was also something that he himself didn't know the answer to. Mick posed the same challenge, and again, all the children laughed.

I looked at Mick. "Do you remember autism? He's trying to make this game be like a game he plays on the computer. That's one of the things he likes to do that seems a little funny to other people. But he just wants to play with you." Mick nodded, and he and the other boys answered the next several of Boo's questions and managed to 'free' him from the swing.

They ran around playing for a while, and then Mick again tried to organize his animal club meeting. I agreed to attend. Boo was happy to go as well, but was trying to run it and make people listen to one of his own soliloquies. I called him over to me and explained that what Mick wanted to do for the meeting was for us to listen to him tell us all about polar bears. Boo sat quietly, and Mick began his speech. He was repeating the information he'd told me earlier verbatim. Yep, scripting. I was starting to love this kid. He stood atop a picnic table, trying hard to recall enough facts to qualify as a speech. Boo was quickly uninterested, but I made it a point to give Mick my rapt attention. Nate was serving as 'secretary' of the club. As near as I could tell, the duties of that position included sitting on the table next to Mick and occasionally whispering more facts in his ear when his speech got stuck. (This was clearly a conversation that had been ongoing between them for some time) Eventually the meeting was dismissed.

At that point, we had been in the park for about two hours and it was time to leave. To abbreviate the end of this little tale, let's just say I had to haul Boo away kicking and screaming. He did NOT want to leave the other kids. It took a while for Boo to settle and his meltdown to subside. It took even longer for me to wrap my mind and heart around all that had happened. It was clear to me that it was possible for Boo to be successful in a social setting with his peers, but that it was not going to happen without support. I am certain that if I had not been paying close attention, it would have been ugly. And had I not been watching closely enough to see the beginning of the problem, he would have simply been in trouble for fighting and it would have left him confused and frustrated.

It was clear that not only do we need to work on giving Boo the tools he needs to navigate social interaction, but we also have to work just as hard giving his peers the knowledge and education they need in order to be understanding and compassionate. His classmates need to be taught about his differences. It's clear to me that he is not going to "blend" as well as I had hoped. I will have to do some work to figure out the best means of accomplishing that, and I am confident that the kindergarten teacher will be receptive and helpful in that effort. It was a hard pill to swallow, but it's important to face.

Friday, June 1, 2012

Puzzle Solver

We had read our books, said our goodnights, and hugged each other. He was laying with his back to me, still and quiet. His breathing was smooth and even. I had just decided it was safe to get up and leave the room. Suddenly, he rolled over and looked at me with the most satisfied expression on his face. He thrust his hand toward me, his middle fingers curled into his palm and announced, "He must have a hole in his wrist so his webbing can come out when he shoots it when he's wearing his costume!"


Yes, my love. You have figured it out. Now rest your lovely brain my darling. There are plenty more puzzles awaiting you tomorrow. I adore the way your little mind works!

Hey Girl, it's Friday!

It's the end of another long week. My husband was away for three days at the beginning of the week. Wednesday evening was difficult. Thursday was wonderful. Today we have to make a trip to Walmart, which could go either way. But this evening my husband and I are supposed to go to a banquet for his job. An evening with adults and free food, I can't wait! Let's hope they don't decide to dispatch him for early morning tomorrow, because if they do he will have to stay home and go to bed early instead. But if they do, at least I can comfort myself with a chat with my old pal Ryan. Check him out below, then head on over to Advntures in Extreme Parenthood and check out some more of him. And have a great weekend!

Oh Ryan, you just can't get enough can you? Silly man.

Keep trying Ryan, someday we'll get there.

Oh, Ryan, stop! She meant well. I'll just have to work harder to educate her.






Thursday, May 31, 2012

A Storm Brewing

It was a beautiful day. Boo and I had a great morning together. I got the yard mowed, and Boo and The Wiener Dog pretended to be superheroes while the lawn mower played the part of the villain. I had a nice bath and washed the grass off, and only at the very end did Boo attempt to climb in with me and insist on giving me toys. Because, you know, you are being deprived if you have no toys in your bathtub.

We made a quick trip to the local grocery store for a jar of mayo. Boo insisted on staying in the car while I ran inside. When I got back, I found him sitting in his seat with his chin on his chest. I asked him what was wrong. No answer. I asked again. No answer. "Booooo????" A small voice replied "I'm sleeping, stop bothering me." I stifled a giggle, then stage whispered to myself "Darn, I can't give Boo these chicken strips I bought him because he is sleeping." Grocery store chicken strips are one of his favorite things lately. Chin still on his chest, he reached one hand toward me and said with a sigh "I guess I'll take them. They help me to stop sleeping sometimes."

Back at home, Boo got busy playing with toys and imagining all sorts of games. His imaginative play is often structured like a computer game, complete with imaginary buttons he invites you to "click." I knew that the forecast called for storms in the evening. I noted that the clouds had begun to move in. Boo's normal complete inability to be still for two seconds hyperactivity was even more pronounced than usual. Boo's Dad arrived home for the first time in three days. Boo was ecstatic to see his dad. I set to work making a dish to take to the family barbecue later, and listened in to their play. Boo was scripting himself and his dad. He was creating races and had less than usual tolerance for deviation from his idea of how it should go.

Boo: "Dad, do you like car number 2?"
Dad: "Yeah!"
B: "No you don't."
D: "Ok."
B: "Dad, do you like car number 2?"
D: "No."
B: "Why not?"

later...

B: "Ok, Dad, the speed limit is 55, so you can drive that or slower. But not faster."
D: "Ok."
(Boo counts down and starts the race, and dad rockets around the "track" ahead of him.)
B: "NO Dad! You weren't supposed to go that fast!"
D: "I was only going 54."
B: "That's too fast."
D: "You said it was 55 or slower, so I went 54."
B: "No, it's only 5. I changed it."

The longer it went on, the more incessant Boo's chatter became. I was cracking up listening. Mostly because I was in a state of joy that there was another set of ears in the house again and it wasn't directed solely at me. Dad eventually went to attempt a nap before time for the barbecue. Next thing I knew, Boo was running circles around the house at top speed. He was a ball of pure energy, unstoppable and intense. I began to countdown the minutes till the barbecue began, longing for him to be able to run, climb, and pedal his way around the place.

Outside, the wind was picking up and the temperature was beginning to cool. I decided that Boo and I ought to change from shorts to pants. We changed clothes and I started gathering things together to get ready to leave. Boo wanted to take his toy Lightening McQueen with him but couldn't find it. He was screaming and upset, and refusing to go. It seemed like a meltdown was imminent, but suddenly he calmed and decided that rather than taking the plastic toy that had been on his birthday cake when he turned four, he could take the metal one he had been playing with just five minutes earlier. But we couldn't find that one either. It was a downright Lightning emergency. Finally it was located and we all headed out to the car.

For a while after we arrived, everything was perfect. Boo was playing happily. I was enjoying adult conversation. I realized I had forgotten to bring my dish, so I headed back into town to get it. On the way back I photographed this cloud bank moving in.


Shortly after I got back to my dad's house the wind picked up furiously and it started to rain. We moved inside the shop building, said a prayer, and began to fill our plates. Of course, there was nothing there that Boo would even consider eating. I had tried to get him to eat before we left home, but he only had three small strips of garlic cheese bread. He is usually content just to play outside while the rest of us eat but this time he was not happy about being cooped up in the shop. The floor in front of the shop doors was wet from the rain and Boo slipped and fell on the slippery concrete. He cried about his hip hurting, but soon got back up and insisted on walking back and forth in front of the doors repeatedly. After a few more falls I finally insisted that he stop walking in the wet area. So he decided to take up a campaign for going home immediately. He whined and begged the entire time I was trying to eat my meal. The main problem was that the seat of his pants was wet from his repeated falls on the wet concrete. But beyond that, he was simply bored.

I continually suggested that he choose from his selection of toys his grandpa keeps in the shop, but he refused. He decided that he wanted to play darts, and set about making the rounds among the family asking each one in turn if they were finished eating. He finally found someone to play with him and for a while his wet pants were forgotten. Later, as everyone was leaving, he found his tricycle and started riding circles around the shop at top speed, shouting "Look out, train coming through-woo!" I helped with cleaning up the place. But when it was time to leave Boo refused to get off the bike. It took repeated requests, and finally the threat of a swat to get him off the bike. He put it away but refused to leave. After having spent most of the evening annoying the daylights out of me begging to go home, when it was actually time to leave he was begging to stay. I had pulled my car around in front of the shop so we wouldn't have to walk far in the rain.

My husband was gathering our belongings as I attempted to get Boo to go to the car. He dug in his heels and his tantrum began to lean toward a meltdown. My nerves were hanging by a thread. The entire evening felt like a trial instead of a joy. I insisted, and he hit me. I swatted his backside and he hit meltdown status. I picked him up and asked my step mother to open the door for me. I carried him to the car, and had to force him screaming and flailing into his car seat. He was clawing at the seat belt trying to prevent me from buckling it, but I finally got it done. By then my husband was on his way out with both his hands full, so I opened his car door for him. As he sat down, Boo was furiously pummeling the back of the passenger seat with his feet and screaming like a banshee. I snapped at him to knock it off and he stopped kicking. As I walked around to my side of the car my step mom caught my eye from where she stood in the doorway of the shop and she remarked "You know, a wooden spoon works great for that."

I was tired, annoyed, stressed, standing in the rain, and ready to snap like a crocodile. I shot her the nastiest glare I could muster and shouted past her "goodbye Dad." Then I got into the car and drove us home. Boo continued his blood-boiling scream in the backseat for a couple minutes before it began to subside. He had smacked his finger on a table while pretending to be a train and now he suddenly decided this was a terrible injury. We arrived home and I got him settled with an ice pack on his finger and an episode of Spiderman and His Amazing Friends on the TV. He ate a bowl of cheese crackers while the show played, and afterward he happily transitioned to his bedtime routine and fell peacefully and soundly asleep. But the thunder in my mind and heart continued rolling long after the thunder outside faded into the distance.

"As the storm blows on, out of control...deep in her heart, the thunder rolls." 
The Thunder Rolls, Garth Brooks

Monday, May 28, 2012

Bye Bye Binky!


A few months ago, there was a furious exchange of texts between Boos Mom and Mammo. The gist of the conversation was "OMG! Elmo is giving up his binky on Sesame Street!!!" We were especially excited about this because Boo was LONG overdue to give up his binky as well. We had worked our way down to convincing him that he could ONLY use it for bedtime, and only while laying in his bed. No mid-day rest time on the couch, no using it to soothe after a meltdown or injury. I comforted myself with the idea that most of the time, once he fell asleep, the binky would fall out of his mouth, so the amount of damage being done to his mouth/teeth was minimal. Of course, I knew this was a giant load of crap, but it made me feel better. Besides, I was making no inroads at all into the idea of giving up the binky completely, and I knew instinctively that this was not a battle I should choose.

Boo has never been motivated by the idea of being a "big kid" or growing up. (With the exception of being thoroughly convinced that he would gain overnight the ability to beat his classmate in a foot race once he turned five.) I had been unable to find anything that would motivate him at all toward the idea of giving up the binky. I approached all the old standby stuff, the binky fairy, taking it away cold turkey, etc. The only one I didn't do was to cut off the tip, because again, I knew instinctively that doing so would produce a bedtime $%*! storm. So Mammo and I watched him watch Elmo talk about this milestone and chewed our fingernails in hope. We hoped that this song would worm its way into his mind like it did ours, and the idea would start to take root.

After I knew he had seen the segment a few times, I started to introduce the idea that someday he wouldn't need his binky anymore. It was a gentle thing. Never asked him to give it up NOW. But I knew his birthday was coming soon. So when I gave him the bink at bedtime I started to tell him that "one day you will be so big that you won't need this anymore." I left it at that. Then after a while, I mentioned that babies use binkies and big kids don't, and one day he would be big enough not to need it. Every time I used this sort of language I used it while giving him the binky so that he didn't feel that he was being pressured to let it go now. Just trying to get him thinking about it. It's all baby steps! After a while, I tried applying a time stamp to this concept. I suggested that when he turned five he wouldn't need the binky anymore. That's when I started to see resistance, so I backed off a bit. I didn't talk about it every night, but did mention it a few more times. But the resistance got stronger, so I stopped talking about it. The last thing I wanted to do was create anxiety surrounding his birthday and suck the joy out of turning five. So I stopped talking about it.

Then, the night before his birthday, I got ballsy brave. As I handed him the binky, I reminded him that the next day he would be five. I then simply asked him "So what will that mean tomorrow night?" To my astonishment, he replied "I won't need my binky." He was so matter-of-fact about it. I was stunned and proud. But also, I knew better. I knew there was no way it was going to be that easy. The day that he officially turned five was a big and fun day! By bedtime, Boo was exhausted. I took a deep breath, and when he asked for his binky, I reminded him that he was five now, and therefore did not need it. He began to cry and beg, but not as badly as I anticipated. We managed to compromise by allowing him to use it while we read books, and then put it away for sleep. So on his fifth birthday he fell asleep without the binky. He did cry about it a bit, and asked for it several times. He told me repeatedly that his mouth was uncomfortable. But he fell asleep.

The next night, I refused to give it to him during book time. I explained that now that he is a big kid, the bink, which is made for babies, can damage his teeth if he continues to use it. This threw him for a loop. I could see he was really considering that. He did not like the idea of any "damage" to his body. We somehow managed to get through bedtime without much credible resistance. It helped also that once again, it had been a big day, and he was extra tired. Over the next week, his requests for the binky quickly dwindled. It didn't take long for him to quit mentioning it at all. When he did, he insisted that his mouth was uncomfortable, and asked me "what am I going to munch on?" But it never once came to the point of a meltdown, or even a credible threat of one. Not even so much as a tantrum. I was stunned. I made one facebook post about it on the night of his birthday, but other than that I maintained public silence on the issue. I didn't want to press my luck, or to eat my words. I wasn't sure this would hold.

I hid all the binkies in my sock drawer where he would happen to see him and be reminded of them, but where they would be easily accessible in the event of a middle-of-the-night binky emergency. I haven't taken them out since. Every week or so Mammo would tentatively ask me "is he still going to bed without the bink?" Yep! We were both proud and amazed, but also kind of waiting for the other shoe to fall. Well, tonight will be the 25th night in a row that my Boo goes to sleep with nothing in his mouth but what God gave him. I didn't think I would ever see this day happen. I'm so proud of Boo, and so thankful that I was so lucky.

How about you? Did you/your child have difficulties giving up certain aspects of baby-hood? Share your stories with me!