Status Check

Things are changing. Things are moving. You sort of feel it before you see it. Sometimes that feeling actually comes from what you "think" is a regression episode...except it isn't. It feels like a step backward, but if that constitutes a step backward, then what comes next is a sprint down the street.

I'm a bad Catholic (inside joke for those that know me well), but I generally try to participate in the annual Lent tradition. This year I chose not to give anything up, but to instead commit to updating this blog at least 2 times a week. It is a service to myself (hello therapy!), to my kids (who I hope will read this some day), and to the autism community (where I hope I can offer some comfort and hope to other parents and siblings).

I recently sat in an ARD meeting and willed myself not to cry. Not because it was sad, not because I was upset that I was a parent that had to be in an ARD meeting, not because I was having to fight for what I wanted for him. His teacher whom we adore, who has made such a monumental difference in our lives for the past two years, was making the formal statements required at the beginning of the meeting. This is the part where they describe the student when they first arrived in the program. This is the part where she said "Kellen came to us as a non-verbal student with a diagnosis of autism..." She went on to describe his inability to attend, to comply, to participate, and his utter lack of language, of communication, of engagement. It's as if I had forgotten where we started. It's as if it was a lifetime ago. When you focus on every little thing that isn't going as well as you'd like every single day, you forget to back up and look at how the whole world around you has shifted...how that progress means more than today's tantrum over shoes...shoes he asked for...by saying "I want shoes." You forget that that tantrum is progress, that tantrum is something you prayed for, that tantrum is everything.

Tears formed when she described his current status as verbal, as having made huge progress, as being "so smart". His teacher for next year was there, and she mentioned she was excited because he would be the only "talker"in her class. So here he is, at the top of his class already : ) She came in wearing a race jacket, so of course I loved her immediately. I think she'll be good for him as well, and I continue to be grateful for the amazing team that has been laid in our path. I'm excited for next year. Not so scared, not so sad, but ready to see where we go from here...because we are actually GOING somewhere...forward progress.

Today we got a glowing email from his teacher that he had had such a good day that she didn't want to put him on the bus! We've had a lot of good days lately. We've seen him celebrate his birthday, really. As in he opened the presents, he blew out his candle for the first time, he wore his birthday hat at school.

And minutes after the email, I logged onto his online tracking system for after school therapy and found myself staring at this graph on the front page.

About a year ago, I thought everything we had built for him was falling apart. The issues we were having with insurance, with the private school that we had put all our hopes into, I remember feeling like we had failed him. But as I sit here one year later, I have no regrets, no reservations, no "what ifs". By now, you should all know about my dislike of "everything happens for a reason" (and for those of you that are new, that developed after I endured 5 miscarriages in a row...and the reason for that was??). Anyway, I keep finding myself (and honestly even with the miscarriages...hindsight and all that jazz) thinking it again. Maybe we went through this therapy drama last year so I could appreciate what a gift it is to be able to do this for him. So that we could migrate to this dual public school/ private therapy system that has worked unbelievably well this year. So that we could get all of the right people in his life at the right time. No regrets, but definitely more questions...

Because he is progressing so well, we've got to carefully think about our next moves. Everyone believes that he has tremendous potential, so it becomes even more important to continue to keep that elite team, to continue to let that team evolve, and to let Kellen be our guide. When we started this journey, we knew there was a chance that we'd be faced with significant limitations, that we could hit a ceiling very quickly, a ceiling that would give us a few distinct choices for his education and life path. But that didn't happen. His possibilities are growing exponentially every day. With every word, with every look into my eyes, even with every stubborn tantrum. Now is when the hard work really starts. Now is when we rewrite the book. He will have far more choices in life, and we have to be good guides along this path. But he's already showing us that we haven't got a clue. He's already showing us that there are choices we haven't even dreamed...but he has. He isn't held back by what this world says he "should" do...and that's going to make this fun to watch.

To Kellen, On Your 5th Birthday

Five years old. For any mother that age is a milestone because it means “real school” is around the corner. Autism inadvertently put additional weight and pressure on this birthday. Real or not, that deadline has hung over my head since the day you were diagnosed…I’ll explain in a second.

I remember vividly the day I realized I was pregnant with you. Surprise! I also remember being told (at 13w) that you were a girl, only to be corrected at 18w that you were in fact a boy! Surprise! I remember the morning I went into labor too early and all the panic of every minute. And I remember bringing you home as a perfect little bundle of surprise and wonder.

You were so small, but you grew so fast. I remember those chubby little cheeks (and arms and legs). From the beginning, you and I had a ridiculously strong connection. Some would say that your attachment to me was not normal, they would call you a mama’s boy, they might even have thought that I was causing the issues, the first signs. But a couple of years later, we’d hear the word autism for the first time, and then I would come to understand that I was your constant, your security blanket, your safe place in a world that was too fast, too loud, too bright, too everything. And while that bond may have made things difficult at times, it is something that I cherish to my core and am grateful for every single day. Because your bond to me is not typical for children diagnosed with autism. Because our bond didn’t care, broke through walls, and kept us from falling apart.  

You, my son, have made me a better person. Stronger, more compassionate, less selfish, and more understanding. You are helping to mold your sister into an unbelievable little girl. Beyond all of her strengths, you are her biggest teacher in humility, in tolerance, in empathy, in unconditional love. Know now that she loved you from the moment you were born. That she has watched out for you every single day of your life. That she holds no resentment over the “rough days”, that she compromises without us asking because she cares how you feel, that she is your greatest fan and teacher. When you do something she asks or make an unexpected step forward, it is pure joy that we see on her face…and pride. Know that your father works tirelessly to get us all that we need. He takes care of us all…and most weeks I’m the one needing more care than you ; ) He is my partner in every battle we’ve faced in this life, and we will keep fighting for you and your sister until the day we die (and even then I’ll haunt people until you get what you need if necessary).

At 5, you are a BOY! You are so adventurous, climbing, jumping, sliding down the stairs on your stomach for fun, climbing the shelves in the pantry, running full speed across the yard and hurdling everything in your way, and of course the trampoline is by far your favorite place these days. Your hair is unruly and this is evidenced by your school picture for this year. Your eyelashes are ridiculously long. You love Power Rangers, Transformers, and the Avengers. Your taste in music is unbelievable! The songs you find using the iPad are so complex, and I hope one of these days you will make me a marathon play list. Your favorite song lately is “Glory and Gore” by Lorde (you even sing it when you’re in the mood). You also happen to love the dance mixes that Larkin and I like to sing and dance to in the car. 

Your love of toy cars has been replaced by a love of action figures. You sing…in multiple languages sometimes. You understand static electricity and think it’s funny when you shock me. You are a problem solver, and we are constantly trying to stay one step ahead of you. Your favorite game is to get Larkin to chase you around the downstairs. The squeals of laughter from the both of you are sounds from heaven.

So that brings me to why “5” has weighed so heavily for so long. I’m a scientist, you know this by now if you’re reading this. As soon as we put a name to why you wouldn’t turn when we called your name, why you seem overwhelmed all the time, why you weren’t talking…as soon as they said you had autism…well I did my best to be both mother and scientist. One of the factors that I could not forget was that based on several studies, there seemed to be a deadline. That for whatever reason, and whatever arbitrary cutoff they set, several meta-analyses had determined that for children with autism who were initially non-verbal…well that we had until you were 5. That if we could get meaningful VERBAL communication from you, spontaneous language, before the magical date of February 6, 2014, that we would have exponentially larger hopes. Because it seems that the kids who did meaningfully communicate verbally before 5, well those kids seemed to have a different trajectory, those kids seemed to have it just a little bit easier down the road. Now I know that there are many children who do progress to meaningful communication, verbally or otherwise, even years after their 5^th birthday. But for me, my dream…not my expectation, at all, was for you to tell me something, anything, before this day.

And you did. As I sit here doing the ugly cry realizing how amazingly far you’ve come over the 2.5 years since you were diagnosed, I have to take a minute to truly appreciate where we are. When we went through our assessment in June 2012, you didn’t utter a single word (not mama, not milk, not cookie….not a single sound that meant something to you or to us). You wouldn’t look at us. You clung to me, yes, but not in a purposeful show of affection…it was a survival tactic…a need…not a want (at least that’s how I perceive it knowing what you are capable of now). I would talk about days that you were “here” or moments when you were “present”, meaning that the majority of the time you were tuned out to everything, in your own little world, in a shell we couldn’t seem to break through. I would have given anything for you to look into my eyes and just say something.

And so here we are on your birthday…it “snowed” this morning, because in south Texas, sleet that collects on the ground totally counts.  You look me in the eye every day. Actually, I’m pretty sure you know how much that means to me because when you really want something, and I’ve already said no, you come over, look me in eyes and ask again…which I just realized works every time. You say “I love you”…and mean it. You hug and you kiss, spontaneously and on request (usually by Nina and Papa). You say “Night Mama” every single night. You recognize emotions, you’ve even cried just by seeing me cry. You are so silly and you know it. You’ve recently discovered “No” and “Don’t”, and you try to approximate everything we say. My favorite thing lately is “Uhoh” everytime something falls on the floor or goes wrong. You are also a very good cleaner (unlike your sister). If you spill milk, you go straight for the paper towels and clean it up yourself, you even throw everything in the trash when you’re done, you’re actually pretty self-sufficient like that. And you’ve just started using a complete sentence “I want ….” You want shoes, and milk, and outside, and juice, and even water I’m proud to say. You’re working so hard to pronounce those words perfectly too. You also say “Power Ranger”, “Transformer”, “IronMan”, “Spiderman”, “Ben 10”(or Ben Diez because you like to watch it in Spanish lately).

So I’m going to do my best to cry as little as possible today. Because while we still have so far to go, you’ve already proven to us that this will all be worth it. You are verbal…before age 5. And I am grateful. We’ll change the world together my boy. You’ve already changed how I see the world so very much. One day at a time. Happy Birthday buddy.

Love,

Mama

An Angel in Soccer Hell

So Patrick has been gone since last Saturday, we're on day 8, and I've been dreading today. Our new wonderful sitter was busy today, my good friend Annie was having a jewelry party, and I wasn't sure there was anyone else that would be comfortable handling Kellen for the first time. Larkin had soccer pictures at 12pm and a game at 1pm...it sounds so simple...but it's soccer hell!

It is truly an autism nightmare. It was unbelievably hot, no breeze, full sun, heat index in the triple digits. It was crazy crowded with kids running all over the place with no respect for personal space or going around people and don't kick a ball in crowded places and control your neurotypical kid already!!! (Yes, I may have been pretty sensory overloaded myself!). Add to this that the soccer fields are wide open to a ridiculously crowded parking lot next to a very busy road. It is the last place you would willingly take a kid with autism...

The pictures were running late, as in we got there at 11:45 and at 12:30 we were still sitting there...in full sun. Thankfully, Summer (the coach) offered to take over with Larkin so I could give full attention to Kellen. He was hanging in there great, but it was really hot so I was gonna get him in the car (since the game was on the complete opposite end of the fields from the pictures!!) and maybe get him something cool to drink. He was really doing great....

And so we started to walk away...and all hell broke loose. Because the parking lot was full, I had to park in the grass on the side of that busy road. So here I carry my flailing child whose feet hang all the way past my knees, praying that I don't lose my grip because the cars are so close I can touch them. I manage to get the car door open right after he loses a shoe (and just before I lose my mind). I grab the shoe without losing my hold on him because I'm worried he'll dash out of the car! Then we have the carseat fight...you now the one where he arches his back goes completely rigid and screams bloody murder. I managed to wrestle him in (seriously who needs crossfit) without being able to take the time to soothe him that I would like to because of the fact that my open door is basically IN the busy road. We take off and the frantic crying in the backseat continues...we make it to Sonic somehow all the while he's wailing and I'm fighting back tears. We get our slushes, he takes his, but begrudgingly...whatever had caused this meltdown has still not been resolved!

We drive back to the fields, no Larkin, so I drive over to the end of the fields and see that they've JUST NOW finished taking their pictures. I pull over quickly (people behind me be damned!) because its ridiculously hot and if I can get her in the cool car and keep her from walking all that way then at least I'll feel better about having her out there playing! She sees me and hops in the car...and Kellen's demeanor instantly changes...STUPID MAMA...he thought I'd forgotten Larkin...the tantrum/meltdown was completely due to leaving his sister behind. And all of a sudden the thermonuclear meltdown was totally worth it. He loves his sister, he worries about his sister, she matters to his world...and then I cried again of course. 

I drive them down to the other end of the fields again where I find the only reasonably close parking spot is along the busy street on the OTHER side. Screw it, I take it. Unpack us all from the car while freaking out about the busy road and keeping a death grip on Kellen's hand. Larkin grabs his other hand and thankfully nice people stop both ways to let us cross. We're just about to get setup when of course she announces she has to potty...I send her on, swoop up Kellen and follow behind as quickly as I can (again, I'm carrying 50lbs of kid...surely we should give this workout a name...)...I follow because you know...child molesters and kidnappers and snakes in park toilets...and as we're getting to the door (which she forgot to lock) she's already on her way out. Send her back to the field, and we get set up. I have a bag of snacks and my phone fully charged and ready to handle an hour of Netflix...I wouldn't ever need it...like seriously...do you know how absolutely crazy unexpected that was???

He drank his slush, sat in his Lightning McQueen chair, ate some snacks, and WATCHED THE GAME! Like actually followed the ball across the field, watched the actual game!

He did manage to doublecheek it on the dumdums...

And Larkin looked so happy that we were both actually watching...

I had no hopes of watching the game. I imagined myself chasing him around the fields, desperately trying to keep him from traffic, physically struggling with him because he'd want to go to the massive playground that's RIGHT BEHIND US because we're the first field on that end.

But no...he sat...he watched...he was the best behaved kid on the sideline (no lie, he really was!). No cry, no whine, no run, no need of the iPhone. He was perfect.

We packed up our stuff, we waited for Larkin to do her team post-game stuff, we made it to the car fairly smoothly, and again across the street with the help of nice people stopping. I'm still not sure how I got out of that parking spot!

So after a brilliant recovery by all, I rewarded myself with a Starbucks.

And now we're all relaxing at home...doing a little home repair...

And snuggling...

While Patrick is already waiting in the Rio de Janeiro airport...if all goes well he'll board a plane just before bedtime tonight...and be home soon after we wake up. And hopefully the cool front will be here! 

Meanwhile, lesson learned by me...just because everything points to disaster, never underestimate his ability to adapt and our increasing ability to just roll with it!

Chickity China the Chinese Chicken

Just to be clear, that's a reference to a Barenaked Ladies song. Patrick and I have tons of catch phrases, movie/song quotes, etc that only we understand. Reading our text messages would make you think we're insane. After 17 years, I think we've developed our own language.

In truth, this post is about my trip to China. Holy cow, what complete and total culture shock! I managed to get on the plane without incident thanks to my friends Mr. Grey (Goose) and Mrs. Xanax. I also managed to sleep, which is basically unheard of for me on a plane, but it did leave at 1am. I should have seen the foreshadowing when halfway through the flight we received a snack...a half sandwich...turkey and cheese on white bread. And then this came for "breakfast".

We landed in Beijing at 4am local time. Immediately we saw the haze...it never went away. Pollution is scary and sad. We roamed the airport aimlessly and I discovered my phone didn't work in China, gee thanks AT&T! Found some coffee at Jackie Chan's tea house (seriously) and waited for our flight to Hangzhou.

Landed in Hangzhou to see the same level of pollution...and grouchy me came out. The cab ride was a disaster...traffic, terrible driving, not exactly gorgeous scenery...I was done before we'd ever even made it to our destination! 

And then we got to our hotel...we had been alerted by my assistant that the conference hotel had terrible reviews. (And since we spent the entire conference there we can confirm that it was stinky, gross, smoky, and had no wifi!). So my international man of mystery (Patrick) found us an alternate hotel... It. Was. Awesome. Waterfall ceiling shower, separate sitting area, and this tub complete with bath salts.

After a shower, we were ready to check out our surroundings, and in mere minutes, I found civilization!

I managed to hit 4 different Starbucks while in Hangzhou believe it or not! We headed over to the conference to see that the program was super sized so of course we took goofy pics by our names!

The next day brought day 1 of the conference and day 1 of my dislike of Chinese food. I'm starting to think PF Chang was NOT Chinese. Also, the Chinese have some aversion to efficient air conditioning...but also allow smoking indoors...I was miserable!!! Never have my thighs sweat so much! And I DON'T sweat (my running buddies can attest to that awesome genetic fact!).

I also become an accidental vegetarian...

This was all I could manage from the lunch buffet the first day...

We made it through the conference with the help of Starbucks and a place called Paris Baguette, gave great presentations, and even won a couple of "major awards".

I was on an extra committee and ended up touring a local hospital (which I later learned had been treating many of the "new" flu cases...oh joy, not really wanting to relive the movie Contagion thanks!) and going to a catered dinner. I should also note that somewhere between winning the award and heading to the tour, I blew out my dress...like seriously seams ripped on both sides. It wasn't even tight! I tried to ask for a safety pin or sewing kit at the conference hotel, but that wasn't working. I finally got a single safety pin and went to the bathroom to see what I could do...and discovered I had TWO rips on one side and one on the other. I then had a brilliant idea to ask for a stapler...but I don't know the Chinese word for it. So here I go again with charades...they probably thought I was asking for an alligator. Finally someone understands and hands me the world's smallest stapler, which I then have to take back to the bathroom. The staples helped a tiny bit but there were still gaping wounds in my BRAND NEW DRESS! I managed to make it home without major incident amazingly!

Side 1 and Side 2!

The quality of the food at the catered dinner was much better (I had good shrimp and a decent couple bites of beef), but the 11 course meal was a little out there for me at times.

Apparently there's a sea cucumber floating in this soup...

Also, they only served your wine in quantities this big...

And apparently I had the biggest issues with the soups...I can't even speculate on what that is...

Thankfully, we had one free day before heading home. We'd run outside 2 days prior, and I kind of think we needed inhalers after, but the weather (smog) didn't seem as bad on our day by West Lake. The humidity and heat was still in full force though, so we tracked the day by the "How big is my hair?" gauge a la the Friends episode where Monica's hair supersizes in Hawaii...it really does happen to some of us given the right climate!

Look another Starbucks!

This is the sign in the Starbucks bathroom...

Um...yeah...

The good news is that West Lake was beautiful. We saw quite a bit of the lake, tons of lotus flowers, and did some shopping in a nearby market.

You'll notice I'm wearing my A&M shirt...and yes, even in Hangzhou I had a chance to talk college football with a couple of UT and LSU fans!

I also had my best Chinese meal that day...at Pizza Hut!

And before we knew it, time to head home. Delay on the first flight (Hangzhou to Beijing), which gave me time to read the terribly translated airline magazine.

Please don't ever put a "bowel" on the table...

Then we had time in Beijing to pick up a few more souvenirs, get lunch/drinks, and then let me get a beer from the vending machine...seriously...it was $1.

I should also note that on my way to the airport I realized I left my curling iron...in the minibar fridge...I was trying to cool it down before packing...oops!

 

The long flight home was miserable to say the least. I learned that I don't exactly mix with Traditional Chinese culture...mostly due to my love of orderly lines and general hand/respiratory hygiene. I was unbelievably happy to be back on US soil!

 

After a ridiculously long immigration line, I made it through customs and saw a little curly head I recognized buying candy at the little shop there. Saw 2 more heads I knew, and while they had definitely surprised me, I was able to surprise them when they turned around. Larkin ran right into my arms...and once Kellen saw me he did the same...best feeling ever!

China Cliff Notes:

* Don't fly Air China unless you're actually Chinese.

* There are no lines, it's a free for all, so just get in there!

* Always wait for the "normal" toilet.

* They really do like taking pictures over there...like A LOT. We felt like the paparazzi were following us everywhere.

* If in dire need, proceed to your nearest Starbucks. They speak at least a little English and have pastries that you recognize.

* Xanax was not a miracle drug, but I made it there and back without crying so...

* Facebook (and Twitter, and lots of other stuff) is BLOCKED in China. Which is probably a good thing because they might have kicked me out if I'd had the opportunity to post my feelings in real-time!

* When crossing the street, just keep moving. Amazingly, the cars, scooters, and bikes never seem to crash into each other...but you have to keep MOVING or they don't know what to do with you LOL!

* Purell...that is all!

 

We all know that I'm a terrible traveler, so this trip was certainly a challenge. In the end, I'm happy to have gone, but I'm also happy that my next trip is to PHOENIX! Meanwhile, everytime Ni hao Kai-lan comes on I'm compelled to change the channel...maybe I should have paid attention to that show a little more before I left!

Rebuttal of "That Hateful Autism Letter"

In case you missed it, a terrible letter was sent to a grandmother that was watching her autistic grandson this summer. You can read the news coverage here.

http://news.yahoo.com/blogs/dailybrew/ontario-police-aware-hateful-letter-telling-family-euthanize-171036930.html

I’ve been trying to find a way to address this situation in a productive way. I decided that this was my best outlet. Below you’ll find the full text of the letter, with my comments inserted in parentheses.

To the lady living at this address:

I also live in this neighborhood and have a problem!!! (...a problem with over-punctuation apparently). You have a kid that is mentally handicapped and you consciously decided that it would be a good idea to live in a close proximity neighborhood like this???? (You missed a comma...obviously you play favorites when it comes to punctuation.) You selfishly put your kid outside everyday and let him be a nothing but a nuisance and a problem to everyone else with that noise polluting whaling he constantly makes!!! (First...run-on sentence, missing a comma, and it’s “wailing”. If you think he’s killing whales in the backyard then obviously you should check your medication.) That noise he makes when he is outside is DREADFUL!!!!!!!!!! It scares the hell out of my normal children!!!!!!! (Wow, scared “normal” kids, however will they recover? Why not take this teachable moment and tell them exactly what that “dreadful” noise is? Kids are innocent and accepting. It’s parents like you that teach intolerance and discrimination. Way to go.) When you feel your idiot kid needs fresh air, take him to our park you dope!!! (And you can’t go to said park because...?) We have a nature trail!! (Awesome, maybe you should go start exercising so that you have a chance at outrunning the angry mob...go ahead, get going. Should I take this moment to mention that a large number of super-angry autism moms also run marathons to raise funds for autism research and awareness? Hope you’re in good shape!) Let him run around those places and make noise!!!!!! Crying babies, music and even barking dogs are normal sounds in a residential neighborhood!!!!! He is NOT!!!!!!!!!!!!!!!! (You want to talk about normal? Sixteen exclamation points is not normal. If you really wanted to make your point strongly, why in the world wouldn’t you utilize all caps for the whole letter? DUH!)

He is a hindrance to everyone and will always be that way!!!!! (Well the world is still spinning with you in it, so I’m thinking he has a fair shot.) Who the hell is going to care for him?????? (Are you saying that you’re not available to help?) No employer will hire him, no normal girl is going to marry/love him and you are not going to live forever!! (Neither are you genius, and if autism saves him from a wife like you, then thank goodness for that.) Personally, they should take whatever non retarded body parts he possesses and donate it to science. (I’m thinking “non retarded” should be hyphenated. Why don’t you go first with the donations? Your brain could potentially provide exciting data on the origins of hate...then again, the specimen would probably be too small. Never mind!) What the hell else good is he to anyone!!! (Is this a question?) You had a retarded kid, deal with it…properly!!!!! (Sounds like they are, too bad you’re not doing the same with your children.) What right do you have to do this to hard working people!!!!!!! (I’m just going to go out on a limb and say you have no idea what hard work is. If you’d like to know, give me a call. However my hard work requires you to understand a lot of big words, so I’m not sure you’d even begin to comprehend (see small brain referenced above)). I HATE people like you who believe, just because you have a special needs kid, you are entitled to special treatment!!! (Special treatment, no. Compassion, acceptance, and maybe a smile and wave from our neighbors, yes. Every person on this earth deserves that.) GOD!!!!!! (Now you’ve done it. Did you really want to call his attention to this letter? Better prepare for an eternity of warm weather...I‘ve heard the screaming there is dreadful as well, how unfortunate for you.)

Do everyone in our community huge a favor and MOVE!!!! (“Huge a favor” is an awesome phrase, think I’ll start using it.) VAMOSE!!! (Ooooo, pulling out a big word.) SCRAM!!!! (Are they cats or have you time traveled about 50 years in the past?) Move away and get out of this type of neighborhood setting!!! (I’m thinking the neighborhood setting is not going to work out for you after this letter.) Go live in a trailer in the woods or something with your wild animal kid!!! (Wild animal kid, so maybe he really was “whaling”? Your letter is really lacking detail here. Also, I’m thinking you may be more suited to a trailer.) Nobody wants you living here and they don’t have the guts to tell you!!!!! (Well I’m pretty sure A LOT of people are going to have the guts to tell you that they don’t want you living there anymore. Good luck on your housing search!)

Do the right thing and move or euthanize him!!! Either way, we are ALL better off!!!

Sincerely,

One pissed off mother!!!!! (Oh you can’t even imagine what a pissed off mother really is. Apparently we can add “coward” to your growing list of attributes. Sign your name if you mean it.)

The one comment I didn’t touch was the line suggesting the child be euthanized. There’s nothing funny about that. There’s no witty comment that makes that any better. Every mother of an autistic child read that line and felt their throat tighten, their stomachs lurch, the hair on the back of their neck stand up, and their fists close. How dare you. How dare you for one second suggest that these children’s lives have no value. You are a sad excuse for a human being, and I pity you and your poor children. But thank you. Thank you for rallying the community around this family. Thank you for again uniting all families facing autism on a daily basis. Thank you for reminding me that what I do for my child every day matters to this world. Thank you for reminding me that even on my worst parenting day, my kids will be so much better off than the children that are raised by parents like you.

This is the world we live in, whether we want to admit it or not. I won’t stop trying to change this world. I share the good and the bad of our lives with autism. And in the end, I hope I can arm all of my family, friends, and readers with the information, the compassion, and the acceptance that the autism community needs.

The Shared Nightmare

I had a nightmare a couple of weeks ago. It was the kind of nightmare where you wake up hoping, praying with every last ounce of yourself that it was in fact a dream. The kind of nightmare that evokes feelings/emotions so real that you have adrenaline running through your veins when you finally open your eyes. The kind of nightmare that keeps you up the rest of the night.

We all have a select few nightmares that we will remember throughout the course of our lifetimes. The ones that make your stomach drop and your heart hurt to even think about. The cruelest tricks of memory that make you remember and relive pain that (praise God) never actually happened…at least not to me. And I pray every day (every minute) that it never does…but this is my fear…all of our shared nightmare…because for some…it is reality.

We were at a party…in some Inception-like combination of our house, my parents’ house, and some large building I’ve never seen before. Kellen asked to go into the backyard. I let him out what looked like my back door. I followed him into this huge expanse (that is not my backyard), and then I went to check the gate. Because I always check the gate, because the gate is always closed, and so I check it anyway to see it closed, because I have to, because the gate has to be closed, it has to. So I check it and of course it’s closed, but as I turn around, I see that this is not my backyard, not my fence, there’s another opening…far, far away. And that gate is open…and through that open gate, I see a busy street, and beyond it, what I can only describe as a busy city and wide open space in one. Kellen was gone, he went through the open gate, and for that brief (but felt like an eternity) moment, I glimpsed what so many parents like me have had to actually endure. My child was gone, my child who lacks the ability to communicate, who lacks a healthy fear of dangerous situations, who lacks basic survival skills…gone...and my world collapsed.

And then I woke up…Woke up crying, shaking, panting. Woke up to frantically check the video monitor and see him snuggled in his bed. I woke up from hell...but not everybody gets that chance.

Since I had that dream, countless children with autism have wandered and been found, but in just the past couple of weeks, 3 children with autism, all pre-verbal, were found too late…all having drowned. This is the fear that ALL autism parents live with. This is the life we lead, trying to stay one step ahead of the worst. I know many parents that have faced this fear head on, more than once. They are amazing parents, and you cannot imagine the precautions that they take. It’s not a matter of if your child will wander, for most of us, it is when. The lucky ones will find their child in the backyard playing in the middle of the night. The unlucky…those are the nightmares.

We don’t get to be normal parents. It takes only seconds for them to get away. I joke about my helicopter parenting tactics with Kellen, but it’s a necessity. It is for his safety and my sanity. The security system on the house is 10% to keep people out and 90% to keep Kellen in…how would we sleep otherwise?

Our saving grace is Larkin. She watches him, she tattles (Kellen’s opening the door to the garage! Kellen is trying to climb the upstairs baby gate! Kellen is trying to open the fence gate!), she helps me be more places at once…if not, I’d never get a chance to shower when Patrick is gone.

I share all of this with you so that you can be aware. So that you can not place blame on these poor parents that have lost their children too soon and instead offer prayers of comfort to the parents of Mikaela Lynch, Owen Black, and Drew Howell. So that you can continue to pray that few of us will ever have to experience this pain.

I’ve seen cries for better alert systems specifically for children with autism, and I’m all for it. Normal rules don’t apply here. The timeline needs to be tighter, the search tactics need to be different, throw the normal rules out the window and start over. Because I don’t have the luxury of being with him 24/7. Because these kids that were lost were with their parents…the people who know them best. Because it takes just seconds for them to break through our carefully laid security plans. It takes just seconds for nightmares to become reality.

He's Just a Little Boy

April is Autism Awareness Month, but the “awareness” aspect tends to get under the skin of many parents so I think we’ve all relabeled it Autism ACTION Month. It’s fitting that I get to tell this story in the month of April. A story I always knew would be told…just not so soon.

In the past couple of months, I’ve found myself wondering if we should talk to Larkin about autism. She’s always known (I think even before us) that something was different with Kellen and has always explained it to others as “Kellen doesn’t talk” or mid-meltdown she’ll say “He’s having a hard time”. I brought up this topic with my co-workers during lunch one day and received mixed opinions. “She’s too young.”, “What about the stigma associated with the word?”, “Will she really understand?”, mixed with “It’s worth a try.”, “If she already sees the difference, then it might be good to put a name on it.” In the end my thought was that I wanted her to know “the word”, I wanted to take away the negative power of that word and instead give her the positive power to use it. If a barely 5-year old can use it without flinching, then it’s a lesson to all of us. I talked to Patrick and he agreed that we should talk to her about it, but the opportunity presented itself but a few days later (late last month).

We were dropping Kellen off at school, and he was having a particularly rough morning. Larkin asked what was wrong with him…I gave my usual response…”He’s having a hard day”…and then she said “But why does he have hard days?” And so there was my opening. I went for it. I reminded her of his bad days, of the fact that he doesn’t talk, of his need for structure and routine, of cars lined up, and I told her. I said it was called “autism”. She repeated it. “Autism”. I told her that he wasn’t sick, but that “autism” was what the doctors called it. She said, “Well that’s not that bad, it’s not like my rashes and me being allergic to metal, it’s not that big a deal”. And so my dear girl put it all in perspective, autism played a serious second fiddle to contact dermatitis caused by a cobalt allergy. Autism was “no big deal” to her. I remind myself of this constantly.

Over the course of the past few months, I’ve seen her become even more protective of him (and in turn have seen him bond to her in a new way, which deserves a separate post). In rare group outings, she protects his line-ups, takes his cars back from curious toddlers, speaks for him on a regular basis. When April 2^nd rolled around, I told her we were all wearing blue to support Kellen and other kids with autism. She told everyone she knew. She remembers the word, she uses it without fear, without any negative connotation, without pity. She has power over that word. Which is interesting, because in the brief story I’m about to tell, the word becomes irrelevant.

I was sick yesterday, miserable respiratory plague that probably wouldn’t have gotten so bad if I knew how to slow down. Patrick volunteered to pick both kids up so I didn’t have to move. So he had Kellen when he picked up Larkin at preschool. We avoid this situation as much as possible because walking Kellen into a group of neurotypical, loud, messy, over-stimulated 4-5 year olds surrounded by mountains of toys is a recipe for a meltdown…which was in fact the case yesterday. Patrick was helping Larkin gather her things because Monday is dance day, so there are always extra “things” on Mondays. He put Kellen down and only a second later realized that there were boys at the table playing with Legos…lots and lots of Legos. Kellen dashed and stole one of the boys’ creations. The boy tried to get it back from Kellen…and I have to laugh a little thinking how there was only one way that fight was gonna go. Patrick quickly intervened and told the little boy he would get it back for him. So Patrick takes the Legos from Kellen, and Kellen melts down. Kicking, yelling, the type of tantrum that requires a full-body swoop-up and carriage of this squirming angry body to the car.

Well Kellen is just as big as these boys (if not bigger). The “difference” is more obvious these days.

So these boys pointed at him…

So these boys laughed at him…

And Larkin was not going to have it.

She marched up to them and as Patrick recounts “got all feisty and in their faces” and she stood up for him.

“Stop laughing at him, he’s just a little boy.”

He’s just a little boy. Not a boy with autism, not a boy with some sort of deficiency, not a boy with a disability, a handicap, not less….just a little boy.

Patrick says she stomped off but felt the need to turn around one more time as they rounded the corner to look them in the eyes, point and say “Stop it!”

I’d say I was surprised, but I’m not. To hear Patrick’s pride and see his smile when he recounted our barely 5-year old’s encounter, well, it was awesome. When they walked in the door, he said they had a “Larkin report” from school. Unfortunately, as of late, these reports have generally included not listening at naptime, not listening during lessons, not listening during well any other time of the day LOL! She told me the story, too. I went over, germs and all, and gave her a huge hug and a kiss, looked her in the eyes and told her how very proud I was of her.

Because I am. Like wear a T-shirt that says "My daughter is freaking awesome" proud. Yes you can have as many cookies as you want proud.

Because we should all be that little feisty 5-year old who will take on little boys that laugh at our brothers. Because we should get over the need to label every little thing that’s “wrong” with us. Because in every way that I feel like I fail on a daily basis…here, in that instant, I must have done something right.

The siblings will help to change this world. They will hold the power to help not only their brothers and sisters with autism, but help all of us be more inclusive, more loving, more open.

So in this month of Autism Awareness/Action, my daughter is my role model…Larkin is Kellen’s hero. I hope the world is ready for that dynamic duo...because they're smart enough, big enough, strong enough, and feisty enough to change it all.