What's his thing?

I don't know about the rest of the autism parents out there, but whenever I'm in public and my son's diagnosis comes up I'm frequently asked some version of the "what is his thing" question. Um...his thing? Oh, you know, does he count cards, know what day of the week any date was, play Mozart by ear? His special skill?

It is a very common layperson's perspective that autistic people have a special skill, known as Savant Syndrome. In actuality, only 1-10% of the autistic population also have Savant Syndrome. My son is not one of them. In fact, in most academic areas he falls about 2 years behind his peers. And he has no musical ability that we've seen. In fact, he didn't even start singing until just this past year. He has exactly 3 songs in his repertoire: Happy Birthday, Old McDonald, and Baba Black Sheep. So no, we've seen no sign of Savant Syndrome.

I bring this up because the other day I heard the very best question about this subject. Bambam participates in an adaptive sports program called STAR Sports. I've written about the program several times. It is wonderful. It was developed by a college student (we'll call her A) and is run completely by A and a group of volunteer students. They are amazing. And Bambam loves it. 

Bambam is extremely athletic, which is sort of amazing considering he didn't walk until he was almost 2. But now, at the age of 7, that child is really an amazing athlete. Any sport with a ball is second nature to him. I've actually seen him kick a football through a basketball hoop. More than once. On purpose. He can beat anyone at a game of horse on the basketball court. His first time on the golf course, at the age of 6, he drove the ball to the green on his first par 3 shot. Seriously, people stop to watch. So its no surprise that he sort of shines at STAR sports, which is focusing on soccer right now. 

At the first fall session, A's parents had come from out of town to see the program she had developed. They sat next to me and they were so proud, as they should be. A is a wonderful, caring young lady. She is going to take the world by storm. I had a great conversation with her parents. And as I was talking to them, this took place:

A's parents: Is that your son out there in the green shirt?

Me: Yes, that's Bambam.

A's parents: How old is he?

Me: He's 7.

A's parents: Wow, he's big. I thought he was 10. And he's so athletic. His eye/hand coordination is incredible. Do you mind if I ask what his diagnosis is?

Me: Oh, no. He's autistic. And yes, he is big. And athletic.

A's parents: Is that his special skill, athletics?

And that's when I couldn't help laughing out loud. But I decided that I was going to just go with it. Why yes, his Savant Skill is athleticism. We've finally found it. 

I love it. From now on when I get the "what's his thing" question, I'm going to answer athletics. Just go with it people.

Hugs and Loves

For years, Bambam has greeted me first thing in the morning by asking for a hug. I'm not sure when this started, it must have been somewhere around 3 years of age when he began using words. Every morning He comes downstairs with arms stretched out saying "hug". Bambam is a sensory seeker. Deep pressure calms him. I think this is his way of grounding himself before the onslaught of the day starts. And of course I comply. Because what mom doesn't want to start the day with a big squeeze. It is awesome.

For the past 4 years, everytime I get my morning squeeze, I say "I love you". And for years it was answered by complete silence. And then, as words came for him, he would respond with "I like you". But he never said the word love. I often wondered why. I'm sure he could pronounce it, he says much harder words. My (probably flawed) reasoning is because he didn't understand the abstract meaning and how to apply it. The word like is used much more frequently in our everyday language. I like toys, I like playing, I like brother, etc. But love is not used as often. So it is harder for him to learn how to use it.

And then one day a couple of weeks ago when I said "I love you" during our morning squeeze, he looked at me and said, "I love planes". Progress! I was so excited as I also recognized that every autism parent needs to have thick skin and not be offended easily. I mean really, who wants to hear "I love planes" in response to telling them "I love you"? Well, I do as it means progress. He does love planes, he was learning how to use the word love.

This morning during our morning squeeze, I must have been a little distracted as my "I love you" was delayed. And I was rewarded by my little man saying "I love you". And I cried.

My 7 year old son said "I love you" for the first time ever today. 

Best. Day. Ever.

A Piece of My Heart

As a mother, I do not have a favorite. I love all my kids. But I am willing to admit that I love them all differently. They are each individuals, different and unique. What I give them, what they need from me, and what they give in return are completely different for each one. This may be due to the fact that we are a unique family. We are not the typical intact family with 2 or 3 typical kids raised from birth. We are a blended family. And a special needs family. All of these things play a role in my relationship with each of my kids.

Miracle Boy and I have a special bond. A bond different than that of the other 2 kids. Not better, or stronger, just different. He and I were alone for 7 years. Yes, Mr. Fixit and I started dating when he was 3, but we didn't reside in the same household until he was 7. During those 7 years, Miracle Boy was my right hand guy. We did everything together. When I went running, he rode his bike along side me. When I painted a room, he "helped" paint; then played with his toys and kept me company. He went grocery shopping with me, learned to mow a yard at a young age, helped decide where we would go on vacation, accompanied me when I went car shopping or looked for a house to buy. His opinion was always considered (although not always deemed correct). Right or wrong, we were in this thing called life together.

And so, when I went with Miracle Boy to get him settled in college, I went with a heavy heart. That child (young adult, but always a child to me) is a part of me. A very special, very huge part. He is my first bird to leave the nest. Watching him fly is both breath taking and heart breaking at the same time. 

I left a piece of my heart in Arizona.

Pickles, Pears, and Pretzels

Bambam struggles with language. For him it is not intuitive, it simply does not come naturally. He had no real words until age 3, sentences until age 5. He works so hard for the words and conversation he does have, but sometimes it just doesn't come out quite right. The other day I bought pretzel snacks in the shapes of the Disney "Planes" characters. Major score as airplanes are one of Bambam's obsessions. On the drive home from the fun house yesterday, this conversation took place:

Bambam: I want pickles.
Me: Pickels? I don't have pickles.
Bambam: I want pears.
Me: OK, here are your pears.
Bambam: I don't want pears.
Me: OK.
Bambam: I want pickles.
Me: I don't have pickles, I have pears.
Bambam: I DON'T WANT PEARS! (pause) I want...I want the "Dusty" snacks.
(Dusty is the lead character in the Disney "Planes" movie)
Me: Great job finding a way to tell me what you want! Do you remember what they are called? They are not pickles, they are ...
Bambam: (long pause) Pretzels!

Its a very fine line between helping him slow down and find the right word and watching him become a frustrated puddle of little boy. Sometimes we fall on the good side of that line. Yesterday was a good day.
 

Curriculum Night

I went to Bambam's curriculum night last night. It is the last curriculum night I will ever attend. 

Although on the severe end of the autism spectrum, Bambam attends our local neighborhood grade school where he is assigned to a typical 2nd grade classroom. It is his home room, where he starts and ends the day (when he's having a good day). It is where he attends (most) of the specials, ie: PE, music, art, library (again when he's having a good day). I applaud his school for their dedication to inclusion, we are so grateful for the community of acceptance they have created.

But in all honesty, Bambam spends at least 75% of his day with one of his aides in the learning resource center getting specialized instruction. Because while the other kids in his class are reading in groups, writing in their journals, or doing math worksheets; my son is learning to count to 20, the sounds of the letters, and how to write his name. That is, when they can get him to sit and focus for at least 5 minutes at a time.

Most days I'm good with this. Fact is, we've long since been down the 5 stages of grief road and have firmly landed on acceptance. We've accepted that Bambam is on his own time schedule, he will learn at his own pace. And he does continue to learn and we celebrate each and every one of his small victories. 

But, that doesn't mean that there are no longer times when I have a small pity party. And as I sat in that curriculum night listening to his classroom teacher talk about the children leaning to borrow and carry over in their math skills and showed parents their writing journals, I was sitting there hoping that Bambam was having a productive pooping time for daddy so he could wear underwear to school the next day. And it hit me smack in the face yet again. Just how far the gap is between him and his typically developing peers. And it sucks. Sometimes it just sucks. 

I cried all the way home. I was a mess the rest of the evening. I was grieving all over again. And really, I don't need that. It doesn't help anyone, least of all Bambam. And isn't that who this is all about? 

So I decided I will not attend any more curriculum nights. And if a teacher or other parent thinks I'm "that" parent that doesn't show up or isn't involved, they will simply be wrong. What I am is "that" parent who will focus on what is right for her child. 

Runners

I am a runner. I am not fast. I struggle with distances. But still, I lace up my shoes and I go out and pound the pavement. That makes me a runner. Anyone who goes out there and puts one foot in front of the other is a runner. As the saying goes "I've never seen a fake runner."

I started running in college. I ran because my roommate did and she invited me along. So, I ran for "girl time". I ran to help alleviate stress. I ran to help clear my head. I ran to make studying easier. I ran to stay in shape as I was no longer involved with competitive sports. I ran so I could eat the pizza (and drink the beer) and still fit in my clothes. And I fell in love with running.

I've been running now for over 25 years. (Holy cow, that is hard to write) I've run numerous 5ks, and 10ks, and my share of half marathons. And I still love it. I love running by other runners and getting the wave, or the smile, or the nod. Runners know what I'm talking about. The running community is like no other. It is full of encouragement and compassion and understanding. I will never forget the time I was running in a very big relay race and a runner from one of the elite teams passed me. As he passed by he said "You're doing great. Keep it up." A guy  who could run circles around me took the time to encourage me. It was awesome.

I find encouragement in the elite runners, like most people do. There ability to float across the landscape almost effortlessly with their zero percent body fat machines is awe inspiring. I watch the Ironman every year on TV and then I go pound the pavement that much harder. I realize I will never be them, but I sure like trying.

I am also inspired by the beginner runners. The ones who are not in shape, who don't have zero percent body fat, the ones who don't look like runners. And I want to encourage them. When I'm driving Bambam around and I see an overweight person struggling to run down the street, I want to roll down the window and yell encouragement to them, "You're doing great. Keep it up." But in all honesty, I hesitate. I hesitate because I am afraid they won't think I'm sincere. That maybe I'm teasing them. And that is the last thing I ever want. Its hard to get off that couch and take the first step. But they've done it. And I find that inspirational, just like the elite runners. For different reasons, but inspirational just the same. Everyone who goes out there and puts one foot in front of the other, over and over again, is a runner.

The Cost of an Education

I took Miracle Boy "school clothes" shopping yesterday. I told him it was probably the last time I would ever buy him school clothes as he leaving for collage. It was just he and I. And we had a great time. We laughed, we talked about some serious topics, he opened up about things. In general, it was awesome. I love spending time with that boy. Ahem, young man.

Waiting for him while he was in a changing room, I struck up a conversation with another mother also waiting. Her daughter, soon to be a sophmore at Johns Hopkins University, was also getting school clothes. We had a nice converasation about where our kids were going to school, what they were studying, and the cost of post secondary education. Her daughter is attending Johns Hopkins, a very prestigious, very expensive school. A school full of "spoiled, ivy league rejects" as she put it. She had a great sence of humor.

In the course of our conversation she indicated that although her daughter received several scholarship offers from other schools, she insisted on going to Johns Hopkins. Johns Hopkins does not award merit scholarships. We learned this when Miracle Boy wanted to attend Stanford. There are no merit scholarships at these schools. Probably because everyone who applies is a great student. So, her husband writes the checks every year totalling $60,000 per year. Thats right folks, $60,000 per year. As in $240,000 for a four year undergraduate degree. Almost a quarter of a million dollars, if she finishes in 4 years.

After our conversation, I started to wonder. Can a 4 year degree really be worth a quarter of a million dollars? Is a degree from a school like Johns Hopkins or Stanford really worth 3 to 4 times what a degree from our local state collage is worth? Will someone who graduated from one of these schools really make that much more money? Be that much more successful? Be that much happier and more satisfied with life? I just can't wrap my brain around it.

Clearly this family could afford to pay $60,000 a year for their daughter's education, or so it seemed. But I started to wonder, would I do it even if I could? I simply do not believe there is that drastic of a difference in the education, or the resulting knowledge or earning potential. I know there are studies on this, I looked briefly. What I found is that there is no consensus. Where one says overwhelming yes, it is worth it. The next says overwhelmingly no. And the numbers cited, about the average incomes of this prestigous group? Well, I was making that income in my prior life. 6 years after graduating from a small, local, private school. (On scholarship, otherwise it would have been the local state school) So, I just can't buy into it. Yes, you may make great connections and contacts. But this is not necessary to be successful or happy.

I ended up with a completely different internal response to the conversation than I thought I would have had. I would have thought that I would have felt bad that we weren't paying more of Miracle Boy's educational cost. That I would have felt guilty that I only gave him $250 for school clothes instead of the $1,000 the other girl was spending. That I was being miserly telling him that we weren't going to fly him home for Thanksgiving, that he wouldn't come home until Christmas.

But surprisingly, that's not how I felt. I honestly felt good about our decisions. When Miracle Boy was born, I started a college fund for him. As the time approached for him to start making some choices, I showed him the balance and told him that is what we were contributing. No more. He needed to make a decision based on what he could afford based on that information. And he did. He's attending a good school out of state that offered him generous scholarships. He worked 2 jobs all summer to make up the difference between the scholarships, what we are giving him, and the remainder for room, board, and books. He's happy with his decision. And more importantly, he's contributing to his own education. To me this is critical.

In this world were we (especially as mothers) second guess many of our decisions, wish we could do more, feel inadequate; it's a nice change to feel good about something for a change. 

An Alternative Route

Right before school let out for summer, I suggested to Mr. Fixit that we take Bambam to see a "holistic" doctor. My suggestion was met with some mild resistance. Mostly because Bambam sees a whole host of doctors and gets poked and prodded enough. Mr. Fixit really tries to limit Bambam's unnecessary doctor visits. He's very protective of him.

But I was fairly insistent. He finally asked me what my goal was. And I replied that I really wanted help with Bambam's GI issues. Numerous appointments with his developmental pediatrician and the pediatric GI specialist at the children's hospital in the city 2 hours away had resulted in no improvements at all. And I was frustrated. I still had a 7 year old with severe encopresis, lots of pain, no bowel control, and a GI system that was basically a mess. Plus, I wanted to explore causes of his psoriasis. I've always been under the impression (right or wrong) that ALL of Bambam's seemingly unrelated issues are actually all related some how. And it seemed to me that most obviously the GI and psoriasis could be diet related. So I begrudgingly got consent. Not that I really need consent, but I like my partner in crime to be on board with what I'm doing, especially when it relates to our kiddos.

Bambam's Neurological Psychiatrist is a DO, not an MD. As such, he is seemingly more open to alternative ideas. (I know that is a very generalized statement and does not apply to all MD's or DO's) When I approached the subject of taking Bambam to a holistic doctor he not only agreed with the idea, he referred us to someone he highly recommended. 

The new doc is an MD, not an ND as more holistic doctors tend to be. She is traditionally trained and practices a combination of traditional and alternative medicine utilizing pharmaceuticals, diet, supplements, acupuncture, etc. At the first appointment, she spent 3 hours with us! 3 full hours. Actually, she spent about 30 minutes examining and talking to Bambam. Then I sent him out to my mom who was waiting in the wings, and she spent an additional 2.5 hours talking with me about everything under the sun related to Bambam. I'd never spent so much time in a doctor's office without testing taking place. At the end of the appointment, she sent us home with a stool sample kit.

One month later we discovered that Bambam had a bacterial staph infection in his gut, his pancreas was not producing enough digestive enzymes, and he had NO probiotics in his gut. 3 weeks after treating the infection, putting him on a digestive enzyme supplement, and high dosage probiotics; that kid was pooping in the potty. A week later he was rarely having accidents or "leakage" as its known in the encopresis world.  Since starting this new protocol, he has not once woken up in the middle of the night in pain. And I am shocked.

I'm shocked that it was seemingly this easy. Now, I don't discount the fact that maybe this is all coincidental. But I really don't really think so. The change was immediate, drastic, and overwhelmingly complete. Even Mr. Fixit, who was a strong doubter in anything "alternative", attributes the changes to the new protocol. And, if we had any lingering doubts, they were put to rest last week.

Bambam takes a lunch from home to day camp. Hidden in his sandwich are the digestive enzymes he must take with each meal. Since he won't swallow a capsule, we open it and sprinkle the contents into his food. Last Tuesday, he wanted the hot lunch provided by the camp and they let him have it. Wow. For the next 24 hours it was total chaos complete with pain and uncontrolled bowels. 

I have 2 theories about the drastic reaction to the hot lunch. First, he did not get his digestive enzymes. And second, the hot lunch was full of fat, sugar, white flour, preservative, dyes, etc that we do not give to Bambam. And his digestive system revolted. Completely. But, after 24 hours of eating normally (for him) and being back on the protocol, he was back to his new self. (And the camp counselors now know that he MUST eat his lunch from home. NO EXCEPTIONS). And, no more doubts.

I'm also shocked that none of this was ever discovered or even explored in the many previous doctor's appointments over the past 7 years. Seriously, it was a fairly simple, 3 day stool test. Why wasn't this done 3 or 4 years ago when I began asking repeatedly about his constant constipation? Or even 5 or 6 years ago when Bambam was waking up screaming in pain several nights a week?  Or 7 years ago when we were dealing with the worst reflux any baby has ever had in the history of ever? And I'm not kidding. At least half of everything that baby ate came back up and out. I smelled like baby puke for 2 years. It permeated my skin, not even showers could get rid of it. 

My child has suffered for over 7 years with what seemingly should have easily been treated years ago. Instead, we were given Prilosec for the reflux, told to put a heating pad on his belly for the pain, and given Miralax for the constipation.  All to treat the symptoms, never looking for the cause. Shouldn't we all have done better? As his mother, I'm struggling with some guilt over this.

I'm not really sure how to end this post. I'm not sure anymore where I fall on the traditional vs. holistic medical approach. But, I will be taking up the holisitic doctor on her suggestion to explore some of Bambam's other symptoms. At this point I'm willing to give her another try. After all, the last time she hit it out of the park. She is now a permanent member of Bambam's Team.

Relief....and an inappropirate reflex laugh

Bambam has been a rockstar this summer. Seriously. He's accomplished many things and reached some major developmental milestones that we were starting to think that he would never reach. One of them being attending a typical day camp with his peers. Yes, he had some extra supports in place, but he's surrounded by his typical peers (whom he learns so much from, good and bad) and he's getting to experience things that his brothers did and enjoyed so much. Its been awesome.

But, when I got a call from the day camp counselor last week, I was immediately nervous. Especially when her conversation started with "there was an incident with a rock today". 

Now, let me back up just a bit. One of Bambamb's things is that when he's done with something, he throws it. No matter what it is. Not maliciously, and not really aiming at anyone, just sort of throws it aside. We've tried and tried to teach him to set things down nicely, or (gasp) even put them away. But to no avail. He simply throws them aside. And he's strong, and he doesn't necessarily look where he's throwing. In our house, everyone has developed quick reflexes out of necessity.

So when the counselor said there was an incident with a rock, of course my first thought was that he had picked up a rock and when he was done with it he threw it and it hit someone. My heart sank. Our conversation went something like this:

Counselor: There was an incident with a rock today. An...

Me: (interupting) I'm sor..

Counselor: (continuing) Another kid threw a rock and it hit Bambam in the head.

Me: Oh thank goodness!

Counselor: stunned silence

Me: laughing

Counselor: more stunned silence, probably thinking I'm insane

I was so relieved that Bambam hadn't hurt another kid. The laugh was probably inappropriate, but is was a relfex. And seriously, after 3 boys if it doesn't involve blood, guts, or vomit; I'm sure he is fine. Perhaps I should add broken bones to that list....we've done that on several occasions too.

Faith

"What ever God you believe in, we all come from the same one"

That is a lyric from Mackelmore's song Same Love. Now, don't go thinking I'm so hip and cool that I listen to rap. I'm a 40 something, mother of 3. I don't have time to listen to rap. But my teenagers do. And sometimes, they will come to me with a song and want me to listen to the lyrics. This is one such song. And I love this lyric.

When I was growing up, I was trotted off to church every Sunday with my family. My dad had attended Seminary. We had bookshelf after bookshelf of bibles and books about the bible in our house. And although he wasn't a full time pastor, he was a certified lay speaker and gave plenty of sermons. My siblings and I spent our youth attending vacation bible school, church camp, youth group, we all went through Confirmation. It was a family affair.

But, and this is a pretty big but, religion was never "crammed down our throats". What was important to our parents was that we have faith. And to them faith was different than religion. As they had learned in their lives, faith can get you though many things in life and it was important to them that we have that. 

I remember as a teenager showing interest in a different church, one my best friend attended.  My parents were very open to the idea. As my dad said, "as far as I'm concerned, we are all worshiping the same God. Find a church that makes you comfortable and helps your faith to grow." He had no interest in forcing us to go to his church, or adopt his doctrines. What he wanted was for us to have faith. How we defined that, chose to show that, to worship; well that was entirely up to us.

When I heard this lyric in Mackelmore's song, it reminded me so much of my dad. My dad, who now at age 80, is lost to Alzheimer's. As far as I'm concerned, he was a brilliant man. He was open and tolerant, accepting and loving. He was years ahead of his time. I love you daddy, and I miss you.

If Only

It seems I've been living in a world of "if only's". Since Bambam was very young and we realized there was something "different" about him, "if only" has been a constant phrase in our house.


"If only Bambam could walk, things would be so much easier."

"If only Bambam could talk."

"If only Bambam could pee in the potty."

"If only Bambam could poo in the potty."

"If only Bambam could swim." 

"If only..."

"If only..."

"If only..."

And it seems, he has accomplished each and every one of the "if only's". In his own time, in his own way. But accomplished them just the same. And I've learned a lesson. Its not an "If " its a "when". I've learned NOT to assume my child cannot gain a new skill. I no long say "If Bambam can accomplish...." I now say "When Bambam accomplishes..." Because he will. Never count that kid out. His determination and grace (Not physical grace, he's the clumsiest kid we have. But inner grace and beauty) are amazing to watch. I have no idea where his path in life will lead him, but it is an amazing journey to watch. And I'm so thankful I have a front row seat.

Money Matters, the Sequel

I wrote a post the other day about how important it is to me to teach my kids financial responsibility. And not just for there own good. But for selfish reasons too. I really don't want them living in my basement when they are 30 years old.

My post explained how I've been working on this with Miracle Boy since he was 5. And I hope he got it. Or at least enough of it to be able to stand on his own 2 feet while he figures out the rest.

But, The Quiet One is a totally different story. As I've said in prior posts, I inherited The Quiet One when he was almost 16. Almost grown. Habits firmly in place. And he has absolutely no idea how to manage money. I don't know if he's ever been taught anything about money management or budgeting or anything. But from the looks of how he spends money, I'd guess not.

Since moving into our household, he has had the same rules and guidelines as Miracle Boy. He started working the week he arrived, has been required to save half of his paychecks, and is responsible for his own spending money etc. He was fortunate in that a family friend of his mother left him a pickup, which we helped him sell since he didn't need the vehicle. The money was put into a long term savings account. It gave him a little boost, put him close to an even playing field with Miracle Boy. However, that's were the similarities end.

It seems we've made some rookie mistakes. We've treated him the same way we treat Miracle Boy, but unfortunately, he hasn't had the same foundation. We've told him to put half his paycheck into savings, and not to spend any of his savings. Upon checking a while back we were shocked to find that not only has his savings not grown at all in a year and half, but it has shrunk by one third! Yikes!

At that point we took away his debit card and cancelled his access to the savings account. He now has to hand over his paychecks to Mr. Fixit, who deposits half and gives The Quiet One the other half in cash. And it seems to be working...for now.

But my concern is, he is almost 18. In less than a year he will graduate from high school and move out. Is that enough time to teach him how to handle money? At a time when we should be stepping back and watching him take the reigns (albeit under supervision) we are stepping in and taking over. How will that work or help him when he moves on?

Yes, He's Special

"I watch daily as my youngest son approaches the world with a happy disposition and a smile on his face. And in amazement I see that almost always, the world responds with a smile right back at him. It seems most people do not mind the extra time, effort, patience it takes to interact with him. They are captivated by his pure enjoyment of life. It is so true that when you smile at the world, the world smiles back. I witness it every day"

I posted that on my facebook page the other day. It is so true. I do witness it every day. Every. Single. Day. 

Today as I dropped him off at day camp, the intake counselor sees us coming and yells "Hi Bambam! I'm so glad you are here today." But she's not the only one. All the other counselors say hi and/or give him a high five. Even the ones that aren't part of his group. They all know him by name.

We run errands on our way home. At the bank, all the tellers talk to him. Engaging in whatever he wants to talk about. Each one offers him a sticker. He says thank you to each of them, grinning from ear to ear.

We stop by his educational aide's house. She contacted me to see if we could come visit. She misses Bambam during the summer, hasn't seen him since the last day of school. They hug, talk non-stop, she hugs him several more times as we are leaving. 

We go to the pool to cool down. Walking through the athletic club, all the employees greet him by name, give him high fives. In the pool as he plays with another little boy (which is huge and a topic for another post) I visit with the other mom. She watches Bambam and says "His smile, its infectious. How can you ever get mad and discipline that boy? He is the sweetest thing."

At the grocery store he engages with the lady in front of us. She is patient, smiles, listens intently to what he is babbling about. I'm not sure she even understood him, but it does not seem to matter. She looks over his head at me and grins. Not the "I pity you" or the "I offer understanding" grin, but a true "I'm enjoying this, he makes me smile" grin. You know the difference. 

Is it because he's special? I'd like to think so. But not because of his special needs. I'd like to think it's because of his personality. Because of his love of life. He touches people. To their core. They respond to him viscerally. I believe he brings them joy, makes this world a better place. And it seems, so do others. The special ed coordinator at his school left this comment on my facebook post: "He is a very special boy. Brings joy to my heart." Mine too Mr. D., mine too.

Lets Say Yes

I recently read a blog post written by a mom of 2 typical kids. It was about her encounter with an autistic boy. And it was beautiful, she was beautiful. It was the kind of post that gives me hope in humanity, that our special kids will find and have a place in this world. But it also got me to thinking.

In the post she quoted the care taker who repeatedly told the boy "no". In an attempt to encourage more socially acceptable behaviors, she would tell him he couldn't do what he was doing. And the blogger (although not trying to contradict the caretaker) told him yes by her actions. Yes, he could interact with her how it was most comfortable for him. She would meet him in his space. 

And it made me think. I started wondering how often I tell Bambam "no". Do I tell him no just because what he's doing is not the norm? Just because it's not the socially acceptable behavior? Is my son growing up in a world of "no's"? That is not what I want. 

This is not an issue at home. Home is the safe place, where he can just be. But when we are out if public, do I try to control his behavior more than I should? Do I try to make him conform? Do I constantly tell him "no"? I don't really know the answer to this. But I'm going to pay close attention from now on. Bambam deserves to be told yes, that he is OK. Just as he is. Stimming and all. Perfect the way he was made.

Money Matters

How do you instill in your children the value of a dollar? For me, this is huge. I watched my parents struggle financially for years, culminating in a bankruptcy when I was in high school. It was traumatic for everyone involved. And I swore I would never put my family through that. For me teaching my kids financial responsibility is high on the list, right behind providing a loving and nurturing home and providing them with a solid education. As I said, this is huge for me.

With Miracle Boy, I've been working on this since he was about 5 and started receiving an allowance. I know, the decision to give an allowance or not is a personal one. I chose to do it. Mostly because I wanted to start teaching him how to handle money. That and I'm a firm believer in NOT buying your kids something every time they accompany you to the store. Actually, I believe in gifts for holidays and birthdays and not in between. So, I thought a small allowance would provide him with a little disposable money of his own in which to learn about finances. And its amazing how quickly a child will decide he doesn't need a new toy when its his own money he's spending.

So, at age 5 he started receiving $5 a week in allowance, one dollar for every year. That sounds like a lot, right? $20 a month for a 5 year old. But, and its a pretty big but, he was required to put $1 into long term savings and $2 into short term savings per week which left him $2 a week for disposable income. And here is where the financial 101 lessons began. As he looked at me with those big, brown, puppy dog eyes he asked me what a saving account was and why he needed them.

I explained to him, long term savings are for big things you may need many years from now. For example a car when you turn 16, or to help pay for college (retirement was beyond his comprehension). Short term savings are for things like birthday presents when you are invited to a party, or Christmas presents for your family and friends. The money you keep in your room is for you. You may spend it how you choose (with mom approval) either every week, or waiting and saving it for something big. And thus, his financial education journey began. 

At 6 he saved and bought a huge Lego set. At 10 he bought a snowboard. At 14 he bought new golf clubs. At 16 he bought an iPhone. At 14 he also started working and was taught to save half of his paycheck. Since he was 5 years old he has purchased all his own gifts for others for all occasions, he has bought all his own electronics, he pays for his own entertainment, gas, spending money, etc. And he still has his long term savings for college which is coming in handy right about now. (OK, so we provided a car for he and the Quiet One to share. Its not like we were against providing anything)

Its not like there haven't been bumps in the road. There were years when he ran out of savings before buying gifts for everyone at Christmas (and many tears shed). There were times when he was invited to go somewhere, but he'd spent all his disposable money that week already (and more tears shed). There are times now when I look at how he spends his disposable money and I think to myself, "wow, I have failed miserably". And there are still discussions on how to handle money. He's working full time this summer. I think he should be saving 75% of his paychecks for when he's in school. He wants to continue saving half, spending the rest "enjoying his last summer with his friends". And I struggle with how much control to exert, and how much to just let go. He's now (almost) 18, leaving for college in 6 weeks. It's probably time for him to start learning his own lessons from trial and error. I just hope he's learned enough of the basics to get him through those lessons. It better be; he's not living in my basement when he's 30.

Anxiety

Sometimes the strangest things will set off Bambam's anxiety. And I don't know why. Recently we were at a sports festival at the fun house. And Bambam was having a great weekend. He tolerated crowds much better than in the past. We attended the small concert on Friday night where he had fun dancing with the other kids and listening to the music. We spent Saturday at the pool which was very crowded and he handled it just like a pro.

Encouraged by Friday night's success, we then went to the amphitheater for Saturday's concert. He was immediately tense. It was louder, there were more people, seating was at a premium. We finally found seating on the outskirts, which was better for him anyway. 

There were several vender booths around, one being a "stuffed banana" booth. I'm not really sure what you have to do to a banana to stuff it, nor do I want to know. I like my bananas in there natural state, thank you very much. But sitting in a chair in front of this booth was a HUGE toy banana with a face including a big, red nose. Bambam was intrigued by this banana and especially the nose which he took to "tweaking". He would run over, tweek the nose, then run back to where we were sitting. He wasn't really bothering anyone, lots of kids were running around. So we simply watched him and let it go.  

After about half a dozen trips, we could see the vender say something to him. We couldn't here him. But he was smiling, didn't appear to be raising his voice or have any concerning body language so we weren't too worried about it. Bambam came back to his chair and said "don't touch nose". I'm sure he was echoing what the vendor had said to him. Which is totally fine. If every kid tweaked the banana nose, it would probably fall off. And perhaps we were a bit too lenient in letting Bambam do it over and over. Seems we are much more accepting of borderline behavior from our special needs kid than we are of our typical kids. But that is really a topic for another post. 

Anyway...its now a couple of weeks later. And Bambam is still showing signs of anxiety about the "banana man". Anywhere we go he asks "Banana man be there?" At night he asks "Banana man went home?" For whatever reason, this exchange bothered him greatly and is now a source of anxiety. And I can't really figure out why. The man was not angry or threatening. It seemed like a benign interaction. The only thing I can piece together is that he was already stressed by the crowds, noise, music and the banana man is what he is associating with that stress and anxiety. But that is just my guess. Parts of that boy are still a puzzle to me. 

The Look

We were back at the fun house this past weekend. And it was First Friday. Which means that downtown is packed with a festive environment of sidewalk musicians, art, vendors, beer and wine tasting, and all the quaint stores are open late. It also means crowds and noise and chaos.

But, since Bambam has been doing so many great things lately, we thought we would try it. First up was pizza by the slice from the hole in the wall pizza joint that we like. Bambam loves their pizza and we usually get it when we go downtown. But its not usually this crowded. As soon as we entered, he stopped in his tracks and grew tense. He had told me right before entering that he needed to use the bathroom. So, even though he said immediately upon entering that he wanted to "go back outside" I made him go use the bathroom first. I barely had his shorts back up before he bolted out the bathroom door and made a beeline outside. No way was he staying or going back inside that crowded place.

On my way chasing him outside, I spotted a mom pushing a special stoller with a 7 or 8 year old girl in it. She caught my eye, she smiled at me as I chased Bambam out the door as he's yelling "go outside now, go outside NOW". And I knew, she knew. She was "our kind". With no words her look and smile encouraged me. She let me know that she understood, I was not alone. We were doing OK. A thousand words and thoughts were exchanged in that silence. And I smiled back hoping to convey to her what she had given me in that brief, silent exchange.

Poop

I recently read that if you are a true autism blog, then you will have at least one post about poop. I don't really consider this an autism blog, its actually about our whole special, blended family. But a large majority of my posts involve our journey with autism. And I have talked about poop. But I've not had a whole post dedicated to it. Until now. 

Last night we hit a Major Milestone. Bambam pooped on the potty! And I mean a real poop. Sufficient amount, with pushing and control and everything. THIS.IS.HUGE. 7 1/2 years in the making huge. OK, well maybe not really 7 1/2 years as no one expects an infant to poop in the potty. But at least 3 solid years of s.l.o.w.l.y working on this from every possible angle. 

To say we were excited is the understatement of the year. Bambam showed every member of our household. Yup, every member of our household came into the bathroom to look at the evidence and congratulated Bambam. I know that sounds weird. But EVERYONE has been working with Bambam on this goal for 3 long years. And everyone was beyond excited. And Bambam reveled in the attention and congratulations. We even took him to the fireworks stand where he got to pick out anything he wanted. Which is a small miracle in itself as until last year he ran screaming from even the thought of a firework. But that is another post.

I realize this is not a done deal. We most likely have weeks, probably months, of accidents and trial and error. But my son pooped on the potty and I am beyond thrilled. Way to go son!

Presume Competence

We've adopted a new philosophy. Mr. Fixit and I decided in a fit of proactive parenting that we were going to presume competence from now on with Bambam. We have always been very cautious with him. Sheltering him. Understandably so. But time and time again, he shows us that he is capable and can do so much more than we expect. It may not be the way we assume it will go; it most often is in his own way, in his own time. But he is capable none the less. 

By sheltering him I think we've been holding him back. Unintentionally. And really with his best interest at heart. We do not want him to get hurt, physically, emotionally, or mentally. I used to think it was hard to send Miracle Boy out into the world, but sending Bambam with his special needs adds a whole new level to hard. It is gut wrenching, anxiety producing terror. I loose sleep at night, I can't concentrate at work kind of anxiety.

But, in keeping with out new philosophy, we signed Bambam up for a few day camps this summer. The first one had a bit of a rocky start (see It was Good...Until it Wasn't) but really ended up being great. Bambam had a lot of fun and his aid was an amazing young college student. We were feeling confident. Presume Competence indeed!

Week 2 was a different camp. This one is run by the local university, on campus. It is a bigger camp. More kids, more leaders, more chaos. Again I talked to the director, we made a plan. We were ready to go. Until we got to check in on Monday morning.

They didn't have any of his information...not even his name. Not to mention the list of special needs and accommodations. Um what??? There were tons of kids, tons of leaders all mulling around. Someone takes us to another table where they look in a new place for his information. Nothing. All the while Bambam's grip on my hand is getting tighter and tighter, he is nudging closer and closer to me. Presume competence.

Finally we find someone who knows about him. She gets down on her knees and talks to Bambam: asks his name, where he goes to school, promises to get him a name tag by snack time. And she takes us to find his group. Bambam's grip is getting tighter yet. I wonder if any blood is reaching my fingers. Presume competence.

We find his group and I ask to talk to whomever is going to stay with him all morning. They stare at me blankly. Usually the kids are handed off from one activity to another (3 of them in the morning) each with different leaders. Not a formula that will work for Bambam, he needs some sort of consistency. Presuming competence is one thing, throwing all caution to the wind and providing him with no supports at all is unacceptable. I finally convinced one of the young leaders (Stormy or Sporty or something. At that point I was almost ready to flee with my child from this crazy place, I didn't really catch her camp name) to stay with him through all the activities. Bambam found a place for his backpack and reluctantly let go of my hand, following Sporty into the gym. Presume competence.

I fought tears on my way to work. I sent Mr. Fixit this text: I do not have high hopes for this. In fact, I'm very nervous leaving him there. Lots of kids and chaos. He was squeezing my hand really, really hard. To which he answered: I was awake all night worried about it. Presume competence.

An hour later I texted: Well he's been there an hour and I haven't received a phone call yet. That's good, right? To which he said: Unless they lost him. Presume competence.

A little later I texted: One hour to go. My stomach is in knots. To which he answered: I'm going 30 minutes early to find him. Presume Competence.

A text from Mr. Fixit: I'm at the pick up area, just waiting for him. 18 minutes before pickup time. My response: OK, let me know how it went as soon as you can. Presume competence.

Finally: He's fine. They said he did fine. Lots of watching, but he's happy. Presume Competence.

He did it! In his own way, watching; but he did it. He didn't get lost, there were no meltdowns, or tears, or accidents, or calls to mom. And as the week progresses and he gets more comfortable, there will be more participation and less watching. All in his own time. Presume competence.

Presuming competence may be good for Bambam, but it just might kill me. At the very least it will turn my hair completely grey and give me an ulcer. I know in my heart of hearts that in order for him to grow we must give him opportunities to learn, sometimes even nudge him along the the path to his full potential. But honestly, this is the hardest thing I've ever had to do. Presume competence. It sounds great, has a nice ring to it. But I think there may be days when I hate those 2 words.

Lessons Learned at Orientation

Miracle Boy and I recently spent 3 days in at the University of Arizona for his Freshman Orientation. We had a great time. It's been years since we've spent a few days alone just the 2 of us. It was reminiscent of our trip to the coast when he was six. He is a great kid and very fun to spend time with. Correction, he is an adult. He's grown into an amazing young man right before my eyes.

He learned a lot of valuable information. He met his financial advisor, academic advisor, has his schedule set, met several other incoming freshman, found out about jobs, activities, fraternities, the list goes on and on.

I, however, learned different things on this trip. Here is a list of the top 10 things I learned:

1. The desert is beautiful
2. Dry heat or not, 108 is damn hot. I mean sweltering, melting, Hades hot.
3. Touring a college campus in said heat feels worse than running a half marathon.
4. You can never drink enough water in the desert.
5. Every building is kept at an arctic cold temperature. So, even in 108, you must carry a jacket with you to wear indoors. Why do they do this?
6. Dorm beds are not as bad as I remember; they are far, far worse.
7. The showers are worse than the beds.
8. When staying in a dorm room do not drink anything after 6:00 pm. The bathrooms are down the hall.
9. College kids are resilient, bright, eager, promising, full of life. Their energy is contagious.
10. Even with the contagious energy, I can no longer function on 3 hours of sleep. Those days are over.

Arizona Bound

Miracle Boy is off to Arizona in August. I can hardly believe it. My baby is going off to college in 3 short months. I'm so damn proud of him.

University of Arizona was his first choice. But, being out of state, it was not necessarily my first choice. Distance and cost were my concerns. Out of state tuition is rediculous! 3 times in state tuition in this case.

But Miracle Boy pulled it off. He received 2 scholarships and 1 academic award from Arizona. Enough to bring the costs within a couple thousand of attending the local in state university. It means he will have to take a small student loan. But its what he really wants; and we will honor his decision. Even Mr. Fixit, who is always bottom line conscious, agreed that this was the right choice.

This is such a big step. And I've been so excited for him. And then we went online and paid the registration fee. And the panic hit. It was so unexpected, it really through me off, this feeling of terror. He'll be several states away. Basically on his own. We're not just a quick car ride away. I hope he's ready.

It Was Great...Until It Wasn't

Bambam started day camp today. I was nervous dropping him off. But Bambam's aid Sam seemed confident. And thanks to our conversation days earlier, when Bambam showed up sporting a blue baseball cap Sam knew he was being a pizza deliver man. Bambam beamed when Sam gave him a frisbee and told him it was a pizza. Off he ran with Sam to deliver pizza.

At lunch time I went back to the park to check in on how things were going. Bambam took one look at me and said "You go back to work. I stay here." And after a quick bathroom trip and a change, off he ran to play with the other kids and I went back to work. It was great. He was having fun, Sam seemed very competent, the other kids were accepting. 

Then, about 1:30 in the afternoon I received a phone call from Sam. Bambam had a bloody nose. Catastrophe. Very few things can put Bambam in meltdown mode as quickly as a bloody nose. It completely freaks him out. And I mean yelling, screaming, flailing arms and legs, complete freak out meltdown. But the worst part is the spitting. He hates the feeling of the blood running down his throat, so he spits it out. ALL.OVER.EVERYTHING. Many times I have ended up covered in blood spatter. It is disgusting. And I'm sure way more than a minimum wage, summer camp counselor/aid, college kid bargained for. No matter how great he is.

I sent Mr. Fixit a quick text: "Bloody nose, on way to get him" and immediately left work to pick up Bambam, panic growing along the way. Mr. Fixit's answer: "Oh no!" We both know what this means. I was sure Bambam would be a puddle by the time I got there.

But when I got there he was no longer crying or yelling or screaming. He looked at me and all he said was "Bleeding. Go home now." But he was CALM! And Sam seemed no worse for the wear. As Bambam climbed into the car Sam said "See you tomorrow buddy". To which Bambam answered "See you later." So, we will try again tomorrow.

“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow.”
Mary Anne Radmacher

Summer...Again

Summers are always hard with Bambam. Both Mr. Fixit and I work. Granted I only work part-time, but still need some sort of day care for about 25 hours a week. In the past we have muddled through with a hodge podge of grandparents, brother's help, and a very flexible work schedule for both myself and Mr. Fixit.

But this summer, that wasn't going to work. Both brothers got full time jobs. Yeah! But it cuts into our daycare availability. And my parents are getting older. My dad has Alzheimers and my mom really has her hands full caring for him. I can't really expect her to also take on a serverly autistic 7 year old for 25 hours a week. So I went looking.

Our City Parks and Rec answered the call admirable. I talked with the director who insisted they could accomodate all of Bambam's needs. So we met to hash out a plan. She agreed to all the adjustments I suggested to make Bambam's first day camp experience successful. We chose a camp that was less structured, lots of free play time. Set at a park, I would drop him off a little later and pick him up earlier in the afternoon so he wasn't there all day. He could bring his favorite comfort items from home. And at the very end she asks if it would be helpful for him to have his own aid. Seriously? Hell yes! The young man she was thinking of had past experience working with autistic children. She'd have him call me to talk about Bambam before camp started. I was amazed. Perhaps I'm naive, but I had no idea they would provide an aid for Bambam.

Sam did call me and we talked about Bambam. What works for him, what doesn't. What his favorite things are. How to calm him down if he gets upset. The best ways to encourage him to try something new. He asked great questions and was really interested in the answers. I have great hopes for Day Camp. I hope Bambam has as much fun as I remember having.

Living in Fear, the Sequel

I wrote a blog the other day about living in fear. Here's is a perfect example of what I was talking about:

Bambam had practice tonight for Special Olympics golf. He LOVES golf. He would spend all day hitting golf balls, to the point of blisters on his hands. But I'm getting off topic.

Tonight as he was practicing on the driving range, he was hitting his driver. (quite well I might add) and in one swing, the head of his club flew off and landed about 100 feet out into the driving range. He glanced at me for maybe a nono-second before bolting out onto the driving range yelling "I need dat, I need dat! Dat mine!". And my heart about stopped.

Lined up across the driving range were about 20 other special olympians, all adults, hitting balls with various clubs right in the direction of my son. The coaches all started yelling "Stop! No one hit any balls! Stop hitting balls!" as I was sprinting towards Bambam. By the time I got to him, he had the club head firmly in his grib and was looking at me wondering why everyone was freaking out. That kid is fast.

As I dragged him off the range I tried to explain that he couldn't run out there, it was dangerous, he could get hit by golf balls and get hurt. But I'm not sure he understood. He did finally repeat "doan go out dere?" No son, don't go out there.

And people wonder why I have grey hair. I think I need a drink.

Living in Fear

The story of Mikaela Lynch grips my heart. It squeezes it until I feel like I can't breath. This is the story of my nightmares. Like so many parents of children with autism, I fear not being able to protect my child at all times.

Although Bambam is verbal, can tell you his name, Mr. Fixit's name, my name, the street he lives on (although not the house number for fear he'll share it with every stranger he meets), he still has no clear recognition of danger. He does not understand natural consequences. He is impulsive, bolts sometimes for no apparent reason. And like many, many autistic kids, he loves water. The combination of these things gives me nightmares. Literally. Many nights I've woken up in a cold sweat, and I tip toe into Bambam's room to touch his sweet face to reassure myself that he is fine. I stand there and listen to his even breathing.

It is an almost oppressive responsibility to keep someone safe that doesn't understand cause and effect, that is extremely impulsive. Who will bolt across a parking lot without looking. Who will jump into a pool without knowing how deep it is (and he can't yet swim, after 2 years of swimming lessons). Who will talk to any stranger in the store. When he looks over the railing of a bridge or a deck, someone always holds the back of him. He leans so far over... I cannot even finish the sentence.

It is frightening. It is overwhelming. I try not to think about it. And then I read a story like Mikaela's. And my heart breaks for her family. And I pray for their strength and peace. I pray that others will offer them support and understanding. I pray for all the other parents of autistic kids who's nightmares have been rekindled just like mine.

30 Days of Autism

I'm often asked what its like to raise an autistic child. There is no quick way to answer that question. The answer I give probably depends on the day. Each day, week, month is different. I'm never sure what to expect. As a way to answer the question, I've decided to write something everyday for a month about what its like raising my autistic child. Autism Awareness month seemed like an appropriate month for this project. So, here goes...

April 1: No April fools day jokes, he doesn't understand them. Bambam is extremely literal and takes everything at face value. Jokes simply don't register. Just another day in our household.

April 2: Today is World Autism Awareness/Acceptance Day. So we changed the light bulbs in front of our house to blue ones to join the "Light it up Blue" for autism campaign. Bambam and I also made cookies with blue frosting to take to his teachers and aids at school. We are so very grateful for all of them.

April 3: Bambam's class had a field trip today. In order for Bambam to go on field trips with his class, I have to go with him. Since we never know how he will respond to a new situation, we always need to have a quick exit plan available. So, I follow the school bus in my car and if necessary, I leave with him when needed. Today was one of those days. He lasted all of about 2 minutes before the "school today, go to school, go see E, its E time, its Phil time...." started. He just couldn't get past the fact that Wednesday is a school day and he should be at school doing his work with Mrs. E and Phil. There is no distracting this kid when he gets stuck on an idea. So, we cut our losses and headed back to school. On the bright side, I only missed 2 hours of work instead of 4.

April 4: Today is STAR Sports day. Bambam participates in a recreational sports league for kids with developmental disabilities. He LOVES it. And the volunteers are amazing, all college kids. He gets to run around kicking balls, hitting balls, playing with other kids and volunteers while I get an hour to sit and watch and talk to other moms who speak my language. Its a win/win. One of the things I like about having a special needs child is the ability to see goodness in this world that I otherwise wouldn't see. These college kids really are awesome. Every day heroes is what we call them.

April 5: Some days 8:00 pm can't come fast enough. Some days its just really hard to listen to or talk about the same damn airplane for the 864th time that day. Some days I just have to say "I'm not talking about it anymore, I'm done." And then I hear a little voice saying "I'm not talking about the airplane, I'm not talking about the airplane." I love his tenacity. But really, that isn't much better. Can't we talk about something else, anything else? Please?

April 6: Med changes suck. We are trying a new dosage of one of Bambam's medications. And he's not responding well. He is uncomfortable in his own skin. That's the only way I can describe it. And its awful to watch. We are supposed to give it a week. We are on day 3. I'm not sure we will make it a week. So hard to watch my baby struggle. (we lasted 4 days, then went back to his old dosage)

April 7: Its raining today, so we're stuck inside...all day. Not a good combination for a child who needs to run and jump and play large. That is why we have a small trampoline in our living room, where the coffee table used to be. Yes, our front room advertises that we are a special needs household. And right now I'm watching Bambam jump from the trampoline into a bean bag chair a few feet away and yell "splash" when he lands. Over and over and over again. 

April 8: More testing for Bambam's GI issues. For the past 3 days I've been scraping poo (yes I said poo) from his pull ups to place in small vials. 3 times a day for 3 days. (yes, he does poo that often) Then I overnight FedEx'ed the "package" to the lab. You really haven't lived until you've scraped poo from a pull up. Just a day in the life.

April 9: Bambam has sharing at school today. The topic is "what I did over spring break". So we took pictures of our activities at the Fun House and made a poster using the pictures and simple captions. We practiced over and over. I'm hoping he'll actually get up in front of his class and do it. I will never give up trying and presenting him with opportunities to grow. 

April 10: An example of Bambam's struggles with language: Driving home we saw a teenager walking up the hill.
Bambam: What is that?
Me: What?
Bambam: That boy.
Me: Who is that. When its a person you say 'who is that'.
Bambam: I don't know.
Me: Can you say 'who is that?'
Bambam: I don't know!
Its funny and a little heartbreaking at the same time. I felt like I was in the Laurel and Hardy "Who's on First" skit. But he really doesn't understand. And never repeats what I'm trying to get him to say. It can be frustrating. Language is a puzzle for him.

April 11: Bambam wakes up happy every morning, eager to start the day. We are fortunate that we do not have the anger and aggression that can be common with autism. He's a happy, content child who seems to be unaware that he is "different". I pray everyday that this stays with him his whole life. Sometimes awareness can be devastating.

April 12: Today is Friday. The third day of no school this week, it was a short week for conferences. And Bambam is NOT happy about it. He loves school and thrives on consistency. We just recently got to where he understood that there was no school on the weekends, and accepted it. But non-school days during the week throw him into a tizzy. All day long I hear "I go school today?" I've probably answered that question 100 times today. Patience, patience, patience. And the ability to have the same conversation multiple times a day. That is what is needed to raise my autistic child.

April 13:  We had Bambam's spring conference yesterday at school. Oh, where to begin. His conferences are nothing like what we were used to. Typical measures for a child his age just don't apply. He's behind academically, socially, emotionally, in every way. If it weren't for the great people and educators that surround him at school, these meetings would be so much harder. But we focus on his improvements, no matter how small. And they always celebrate Ryan for who he is, where he is, and what he has to offer.

April 14: The iPad. Thank God for the iPad. There are days when we use it as a crutch and let Bambam watch his favorite videos over and over. I know, its not the best thing for him. But some days, we all just need to step back, take a deep breath, and relax in front of a screen. I may not win parent of the year, but we will survive.

April 15: Tax day. Having a special needs child means an extra deduction on our state taxes. But don't get all jealous. It also means itemizing all the out of pocket medical costs to deduct on our federal taxes. It's thousands and thousands of dollars. Autism is expensive.

April 16: Today Bambam pulled out his loose tooth. It was bothering him that it was loose, that's not the way it is "supposed to be". He doesn't like things that are out of the ordinary, he wants them to always be the same. So no loose tooth, simply pull it out and be done with it. And when asked if he wanted to look at his new toothless smile in the mirror he responded "naw, wanna go pway outside."

April 17: According to Bambam's aid, he can read several sight words. Who knew?!?! That child does not voluntarily show you what he can do. EVER. We've always said that he knows and can do so much more than he lets on. And it makes things so hard. How do you know what to work on if you don't know what he can do?

April 18: Bambam had STAR Sports today. But there were double the kids as usual. It was very noisy and visually chaotic. And to make it even worse, his usual aid "Sam" was not there. Bambam really struggled. He is hypersensitive to noise and visual stimulation. He spent much of the hour throwing himself on the ground or running into the walls. This deep pressure impact helps to calm him. Its one of the ways he tries to self regulate (instead of using his words or other more accepted calming techniques), but it is painful to watch and scary for those who don't know and understand. Sigh.

April 19: We're off to the Fun House for the weekend. But we don't tell Bambam until about 10 minutes before we leave. He cannot handle anticipation; has virtually no self regulation. If he knows ahead of time, he will perseverate on going to the fun house all during school, getting nothing else done. "Go to Fun House now?" will be uttered by him every 30 seconds until we leave.

April 20: So thankful we have the Fun House. Bambam loves it. To him, it is an extension of home, he's been going there since he was 11 days old at least once a month. Without it, we would never have a vacation. He does not do well in new situations so hotels are out. Day trips to new places are also hard. When we attempted a trip to the aquarium last summer, he lasted 10 minutes. We haven't yet tried the zoo. But at the Fun House we go to the airport, the Lodge, the Village, the river, the pool, etc. And he loves it as he knows all these places and is comfortable.

April 21: Motor Planning is difficult for Bambam. At 7 years old, he still cannot peddle a bike. And I'm not talking about balance and riding without training wheels. I mean he cannot get his legs and feet to push the peddles around in a forward motion, one leg push down, one leg pull up. He sits on a tag along bike behind Mr. Fixit and just rests his feet on the peddles. Mr. Fixit pulls all 65 pounds of him and the tag along bike, pretty much dead weight. We work on this weekly. Bambam got a new bile for his birthday. He sits on it, pushes it around with his feet on the ground, but cannot peddle. I crouch over behind the bike with my hands on his feet on the peddles and maneuver his feet around. It is not easy, or fun. But my kid will eventually learn how to ride a bike, dammit.

April 22: It's Special Needs Ride Night! The local Sheriff's Mounted Posse hosts a ride for special needs kids twice a year. The kids get to ride the horses lead around the arena by the deputies. It's awesome. And they take a picture in front of a green screen and then insert different backgrounds. We have one showing a cattle roundup, and an old western town backdrop. It's very fun. It takes some time and initiative, but there are many opportunities for special needs kids if you go looking. They are different opportunities than "typical" kids have, but they make for great memories just the same.

April 23: OMG. After 7 years you'd think this would no longer surprise me. The BLOWOUT. Like many kids with autism, Bambam has major GI issues. As a toddler and preschooler, it was not unusual for him to wake up screaming bloody murder in the middle of the night several nights a week from "tummy trouble". Thankfully, those days are gone. But, he still struggles with his bowels. Meaning, he doesn't have control. He's either constipated or has diarrhea.  Sometimes he will go several days without a BM and then have a major blow out. I've never seen anything like it before. There is poop everywhere. Down his legs, in his shoes, up his back to his shoulder blades (its even been in his hair), up his front to his belly button, squishing out everywhere. Its not uncommon to just throw away whatever he was wearing, I don't think I could get it clean. And then I dump him in the shower. As he gets older, it gets more disgusting. If we could only get the BM's under control....

April 24: The weather is getting nicer and we went to the park after school. Since I pick Bambam up an hour early from school everyday, the park was empty when we got there. And he had a great time flying his glider, swinging, playing on the equipment. But no sand. I don't let him play in the huge sandbox. I know, bad mom. But when I look at it all I see is a great big litter box for all the neighborhood cats. And he still mouths things, including his fingers. Ew, just can't do it. But he loves the park and has a great time. Until all the other kids arrive. Then my bubbly, laughing, playing child gets quiet and comes to sit next to me and watches the other kids playing tag together on the equipment. And it breaks my heart as I watch him watching the other kids longingly. And not know how to join in. And I ask him if he wants to play with the other kids. And he hesitates .... before he answers "no, go home now". And I want to cry.

April 25: We are having some drywall repaired on the ceiling in our family room. So everything had to be removed and put in other rooms. So our really big plant (tree?) that is usually in the corner of the family room is now against the stairs in the entry hall and everyone has to walk around its huge leaves in the hallway and on the stairs. And one really big, beautiful leaf was in Bambam's way coming down the stairs. So he pulled it off. Not out of anger or spite or being mischievous, just because it was in his way. He was so surprised that I was mad. If something is in your way, just get rid of it. Logical. But not necessarily the right thing to do. No grey in his world, just black and white.

April 26: One of Bambam's meds is a stimulant for his ADHD. It is considered a controlled substance. So, every 30 days I have to go by the doctor's office to pick up a script and take it to the pharmacy. Today was the day this month. Such a pain.
April 27: Bambam has terrible eczema on his feet. Its so bad that his feet and toes crack and peel and bleed and look like they are rotting and going to fall off. Its really disgusting. And I've tried everything. Every night after he is asleep, I creep back into his bedroom and slather his feet with special cream and then put on socks. It helps, but does not cure the problem. We are working with a new holistic doctor to see if we can't find the cause.

April 28: Bambam started Special Olympics golf today. He LOVES golf. Started hitting a golf ball when he was 3 years old. The summer he was 5 he broke the sliding glass door hitting a golf ball into it. From then on it has been wiffle balls only in the back yard. So we thought we'd try Special Olympics golf. He's the only kid. There is no one close to his age, they are all adults. But he does not care. He gets to hit golf balls. And hit he does. One after another. Until there are blisters on his hands. Until we tell him he has to stop.

April 29: Something triggered Bambam's anxiety tonight. I'm not even sure what. But at 7:00 he wanted to go to bed. Bed is his safe place, his comfort. When he is really anxious, when his "fight or flight" response has been triggered, he wants to go to bed. In the past I've not been able to calm him, he has not sought comfort from me or anyone else. He goes to bed with his heavy covers and grinds his teeth. But tonight, tonight my boy was laying in his bed and I was sitting beside him in the rocking chair and he held out his hand to me and said "hold hands". He reached out to me for comfort. My boy sought comfort from me for the first time. So I held his hand, and with my other hand I rubbed the back of his hand, his arm, his back. I tried to impart some of my strength into him, rub out some of his stress and anxiety. And in time he fell into a peacefull sleep. My son reached out to me for comfort tonight. Little miracles are amazing.

April 30: This boy is amazing. He is joyful. He is funny. He is loving. He is affectionate. He is athletic. He is tall. He is gentle. He is sweet. He is strong. He is fast. He is pesisitant. He is tenacious. He is also autistic. But autism does not define him. It is just one part of him. One of many, many parts. He is beautiful.

Note: Being as technologically inept as I am, I thought this had published on April 30th. Oh well, better late then never. Happy Autism Awareness month, about 20 days late.  :)

Miracles

“We must pray for miracles, work like crazy for miracles, expect and demand miracles, and for goodness sake, we must see them for what they are when they happen.”

I read this on another autism mom's blog today and it struck a cord with me. I've seen miracles.

I've seen big miracles. When Miracle Boy was three months old, he had emergency open heart surgery. He was in surgery for 11 hours. We were told he had a less than 1% chance of surviving. I'll stop here and let that sink in. Less.Than.One.Percent. As in almost no chance of survival. At one point, someone (I don't remember who) told us that we would be ushered to the operating room so we could hold our infant son while they "unplugged' him and he died. To this day I do not know how I survived that. I'm amazed my heart didn't give out.

But, not only did Miracle Boy survive, he thrived. All the predictions of being a medical invalid, needing a heart transplant, having developmental delays or other effects from lack of oxygen, none of them came true. Today he is a healthy, happy, bright, promising young man. And every year when we see his cardiologist, that man simply shakes his head and says "I'm not quite sure why this young man is alive. It's not because of anything we did. I never believed in miracles until he came along." He truly is a miracle, a big one. One that happened in an instant, on an operating table, while dozens of doctors watched in disbelief. One of them told us "We had given up. And then there was a spark and his heart just started beating again." No medical explanation, a miracle pure and simple. One I'm thankful for everyday. Big miracles are easy for everyone to spot.

But I've seen little miracles too. Sometimes they are harder to see, or recognize as miracles. But this does not make them any less spectacular.  Bambam is the king of little miracles. And each one of them is precious. The fact that my non-verbal 3 year old now talks in full sentances at 7, a miracle indeed. When he started finally walking at almost 2 years of age (and 35 pounds) it was a miracle. One my back is ever thankful for. Walking into his classroom and saying "hi TJ" to his classmate (with appropriate eye contact), that is a miracle. Attending a birthday party at a bounce place with 20 other kids and not only surviving but having fun and laughing, another miracle. Each one of these miracles has taken hours of hard work and determination (on everyone's part), constant coaching and exposing, leading, prodding. But, just because we work at these things, that doesn't make them any less miraculous.

“We must pray for miracles, work like crazy for miracles, expect and demand miracles, and for goodness sake, we must see them for what they are when they happen.”

Indeed.