A picture worth a thousand words

"Mommy, take a picture of me!"

Big smile, looking right at the camera, using appropriate pronouns, self aware.

There aren't words to cover all the amazing changes we have seen in Simon. The meds appear to be working (we have another EEG soon to check progress), and there are momentous tiny miracles every day.

I know I haven't blogged in a while, but big things are on the horizon and I want to share. Tigger is coming home, more medical tests and med changes, more educational plans to create.

This photo, this moment, seems like a good place to pause and then begin anew.

TiggerFest!!!

Some of the kids showing appreciation for the guest of honor.

The party to recognize all those that helped bring Simon and Tigger together was a HUGE success (and I mean that literally -- there were well over 100 people in attendance!). Thank you to everyone that came out to celebrate with us -- It was a beautiful day and a beautiful reason to throw a party.

Me with the awesome band, Confidence in Volume!

Before our awesome band played, I took a moment to personally thank everyone -- here is (more or less) what I said:

This party is not about a dog -- albeit it an absolutely adorable super hero dog. It still isn't about the dog.

This party is about a little boy who, in his first six years, has encountered challenges that most of us would not be able to survive and still be standing; from a stroke before he was born, to three life-threatening status seizures over the last 18 months, to more diagnosis than I care to think about. And Simon has not just survived -- he has thrived. This has been a year of incredible progress for Simon.This year he had a favorite color, deepened his love of all things pirate, and taught everyone some new songs. He also wrote his name and read his first book. This year, in kindergarten, Simon made his first friends. He had his first play date and he had his first ever birthday party (that he helped plan! Pirate themed...). Most recently, Simon got his first dog and with it his first responsibilities in helping to care for Tigger.

Simon has had an incredible year, and we are profoundly grateful. We are grateful for his indomitable spirit and amazing resilience, and we are grateful to the many people that worked with him, cared for him, befriended him, and let him into their hearts to love him.

Which brings me to what this party is really, REALLY about -- the reason it was so important to our family to get everyone together that has so positively impacted us this year -- this party is about YOU. Our family, our friends, our community.

One of my many faults is not knowing when, or being able, to ask for help. The people that love me know this and, as soon as we started to talk about a seizure dog and said the word "deposit" my parents and the rest of our family were there (as they have always been), this time literally with cash in hand and not taking "no" for an answer. I am grateful that they did.

Mom and Dad chasing the kids!

Our friends, also knowing how hard-headed I am, went right ahead and called Noelle's Dogs for Hope to find out what they could do to help us get Tigger. They shared our story with their own friends, and their families, and without me ever knowing about it, they collected funds to cover Tigger's travel from Colorado as well as a significant portion of the cost. And then we went out for dinner one night and they waited for me to finish a glass (or two) of wine before they told me what they had done. Four months later, I am still speechless.

I am unspeakably lucky in my friends!

Simon's school, Lutherville Lab, not only took amazing care of Simon this year, but have completely embraced our entire family and been right beside us in looking for solutions to make sure that we do everything we can to keep Simon safe. I honestly don't know of another school that would say to a parent (without knowing what sort of legal challenges bringing a service dog into their school would present) -- "Whatever we have to do, we will do it. We are here with you." 

Some of the great ladies from Lutherville Lab

Most of all -- the kids. We spend a lot of time talking and worrying about bullies; especially we parents of special needs kids who worry about our children being particularly vulnerable. But the kids that are here today have proven that they are capable of more kindness, acceptance, generosity, and true friendship than we could ever have imagined. 

At his own birthday party, Jaidon asked not for gifts for himself but for his friends to give him gift cards to Petsmart and Petco so that he could give them to Simon to help buy what Tigger would need when he came home with us (Tigger says thank you for the toys!).
 

Simon with some of the great stuff for Tigger we were able to get with Jaidon's gift cards!

Ridgely Middle found out about Simon and Tigger through Kayla, whose mom is Simon's kindergarten teacher. They used their annual Arts in Action night to raise awareness about epilepsy and seizure dogs, and raised funds for Tigger through the auction of some pretty amazing pop art sculptures. 

"Club Friends" created by a group of students at Lutherville Lab to be a club for kids both with and without special needs to celebrate friendship and share their kindred spirit with the community through good works; waged a "Cents for Simon" campaign that raised impressive funds, awareness, and an amazing affection for Simon throughout their school and beyond (we have heard fifth graders describe Simon as the most popular kid in the school -- I have a feeling that Tigger is going to totally lock that in for next year, too!).

Simon at school with his teacher, friends, and Tigger!

Finally, Simon's kindergarten friends this year, and his teacher and aide Mrs. McGee and Mrs. Natterman. These were the most enthusiastic supporters of the "Cents for Simon" campaign; canvassing their friends and relatives for support, creating lemonade stands and wearing their "Help Simon get a Seizure dog" pins with pride. This year -- seeing how Simon is not only accepted by these awesome kids, but cared for, helped, and genuinely loved by his classmates, has been the most profound gift this mom could have ever received.

People typically throw parties like this to celebrate milestones in their life -- to recognize an important place they have reached and to celebrate with the people that have helped them get there. This year, we have gone from feeling frightened for our son's well-being, to being embraced and uplifted by our family, friends, community, even people we don't know -- together, we have experienced a true miracle, and I can't thank you enough for being a part of it. I will carry this in my heart always and I know that years from now, when Simon is encountering more challenges as we all inevitably do, I will have the story of what happened here to remind him of how loved he is, how great people can be, and how miracles really can happen.

Our awesome school-bus-driver-ice-cream-man made a special appearance with his truck for the occasion. He was just as popular as Tigger!

Beanie Baby Service Pups in Training for everyone to take home!

Simon had so much fun he required a two-hour post party nap.

This about sums it up. :-)

My Third (Furry) Baby

I'm going to be honest -- before I brought Tigger home, I really did think he was going to behave less like a living being and more like a robot. Give command -- follow command. Perfect obedience, some affectionate behavior at designated intervals, but no real personality or independence to speak of. What can I say? I'm going to attribute my embarrassing ignorance to having little experience with dogs in general, and a complete lack of experience in training or working with a service dog. As stated in an earlier post -- I can be proven wrong (and it is usually a good thing that I am).

Tigger, as it turns out, has a lot of personality! He is extremely affectionate and friendly -- he loves people, other dogs, and even my two mean old cats (he looks so sad when they hiss at him!). Like a little kid, he loves attention and really can't stand to be alone for even a few moments. New friends to greet, belly rubs, easy cheese, and stuffed animals with squeakers, all make Tigger a very happy puppy. 

In many ways, all this personality is a pleasant surprise. We've really fallen in love with him and his sweet nature. And I think he truly loves everybody back. Not to mention that, for a 7 month old puppy, he is REMARKABLY well-behaved: you only need to tell him once to "leave it," he never begs, is generally quite calm, and he is usually very willing to follow many commands -- all the result of the last 5 months of intensive puppy and obedience training which I am VERY grateful to our trainers for!

Simon also continues to react to Tigger in a truly remarkable way -- he treats him like a little brother. He bosses him around (Tigger! You go that way! You sleep on your bed! Time to eat!), gives him advice (Tigger! You need to be patient! You need to be a small dog, you're too big!), and he likes to help take care of him as much as he is able. Simon likes to hold his leash, get his food, and give him his toys to play with.

Simon really enjoyed showing Tigger all the new toys we had gotten him (so he has something to do OTHER than chew the cords of medical equipment!)

 However, just like the baby he is, Tigger fusses when he can't go where he wants when he wants to, and he hates being sent to bed. He gets into things because he is curious, or bored (like chewing up the cord of Simon's pulse oximeter after bedtime a couple nights ago! ack!). He gets excited and tests his boundaries in new situations. He also has opinions about who he wants to listen to and be with -- he LOVES Brian and if Brian is home he follows him constantly (despite our ongoing efforts to get him to attach to Simon).

For my part, I've come to realize that, while Tigger is here to serve our family, he is also a member of it. He's another kid to add to our clan, albeit a very furry one. Though he learns fast and is well behaved he still needs some of the things that any kid needs, especially in a new environment.

So -- I've re-arranged Simon's room to give them both their own space. Siblings need that, I think. Simon now has a bigger bunk bed (playtime on top, sleep on the bottom) to accommodate sleepovers with Tigger, but Tigger also has his very own corner of Simon's room with a full toy box of options for him to entertain himself with something other than the cords of medical equipment in the wee hours of the night.

Simon on Simon's bed.

Simon on Tigger's bed.

I'm also providing Tigger with some clearer boundaries. While he behaves like a dream for Brian, he tends to ignore my commands half the time, and he pulls at his leash a lot when I walk him. Apparently, Tigger does not see this momma as an alpha (ha! If only he knew who really made the decisions around here!). I consulted with our trainer, Kim, about this and on her suggestion I got him a "gentle leader" harness that goes on his face for walking and I have acquired a rather loud clicker to get his attention. I also got some good advice from the trainer at Petsmart -- he told me to give a command once, wait for Tigger to follow it and then help him follow through if he doesn't listen to me (rather then "beg" him to do it repeatedly which is what I had been doing). So far, all of this seems to be helping Tigger pay better attention to me. We'll get there.

Tigger with me wearing his new "gentle leader" harness at the grocery store. He did great!

Our other big challenge is getting Tigger to "attach" to Simon as his boy. He likes Simon, but doesn't follow him or pay him any more attention than he does anyone else. Of course, it doesn't help that the one thing Simon does not like (which we are working on) is being very physically affectionate with Tigger. He will pet him when asked to, but only briefly. If we ask him to hug Tigger, he says "no thanks." I think Simon might not yet be that comfortable with Tigger -- especially his size. However, the fact that he is as relaxed with him as he has been thus far is a really good sign. I imagine that, given a few more weeks and a lot more encouragement, Simon will come to love on Tigger like the big teddy bear that he is. I also think that this evolving bond of affection will be the thing that finally gets Tigger to see Simon as "his boy" and help him divert his focus from Brian to Simon.

Overall -- the past few days have been very exciting, and a little overwhelming. I'm simultaneously falling in love with our new addition, and tentatively feeling out this new ground as a pet-parent and service dog trainer trainee. I have so much to learn, but there is one thing I can say for certain -- the more I learn, and the more I see Simon interact with Tigger, the more confident I am that we have made the best choice for Simon and our entire family.  We will get there!

Welcome Home Tigger!

It finally came – the day we have been working towards, preparing for, and eagerly awaiting – May 27th; the day we got to meet Tigger and bring him home with us! Though I admit to having a slight case of nerves (My first dog! And not just any dog, a very special service dog I am going to help train! Eep!), our anticipation was well rewarded with an amazing homecoming. Below, see how our first day with Tigger unfolded -- in pictures!

Tigger's trainer, Kim from Noelle's Dogs Four Hope, requested that we meet her at a mall near her home in PA. She wanted to meet in a public place so she could not only introduce us to Tigger, but could begin to train us on the public access training commands we will be working on while we have Tigger for the next 6 months (after which time he returns to Kim for 3 final months of specialty seizure response training). Though Simon was a little hesitant at first, with some encouragement he pat Tigger's head. Tigger is very gentle and sat quite still as he met his boy for the first time.

Over the next 2 hours we walked around the mall practicing commands and getting to know our new family member. Though I could tell Tigger wasn't quite sure who to listen to (I held the leash and the treats but he still looked to Kim for commands), I was impressed by how well-behaved this seven-month-old puppy was in a relatively populated public setting. The only time he balked was at the elevator (he doesn't like elevators -- something we have to work on with him), and when it was time for him to part from his trainer. I know it was hard for Kim to leave him, too -- how could you not fall in love with this face?

Pretty soon we were on our own -- a newly minted service dog family. 

Everyone took a nap on the way home. It had been a very busy afternoon for kids and puppies (and parents!).

When we came home we discovered our house had been decorated! Our amazing neighbors, the Beckers, had created a very warm welcome. I teared up (as usual) reading the note on the door: "Dear Tiggger, We want to welcome you to our neighborhood! You could not of asked for a better family then the Hatcher's! You will love Simon and adore Olivia, we do! Love, The Beckers"

Tigger was eager to explore his new surroundings and (much to our surprise) Simon wanted to help. I think Simon understands how it feels to want to explore a new place, and so he took Tigger's leash for his very first walk around the house. Simon let Tigger lead, which was very polite of him.

Dinner time! We've been told to try to get Simon to do as much of the care-taking as possible, so Tigger will understand that Simon is "his" boy. In fact, one of the main things we will be working on over the next several months is creating a bond between Simon and Tigger.

Tigger was very interested in Simon's bath. Simon told Tigger he was too big to join him in the tub and should come back later.

Time for bed. We had been nervous about this -- we didn't know whether Simon would be okay with the dog in his room, or if Tigger would be alright being left with Simon. But, one of the main reasons we got Tigger was to help us respond to Simon's nocturnal seizures, and for him to do that he needs to be with Simon when he sleeps. "Start out as you mean to go on" are words I have lived by since the days of babyhood and Tigger's trainer agreed. Put them in the room together and shut the door was what she suggested and (after talking to Simon about it and having him say it was okay, another surprise), that was what we did.

As soon as we left the "boys" alone together, Brian and I turned on the video monitor to watch what happened. We were pretty anxious, especially since Tigger started to whine almost as soon as we shut the door, and Simon pulled his covers over his head. However, after just a little while, a day that had already been special became spectacular.

As Tigger cried, Simon told him to "shh!", but gradually he started to talk to Tigger. And he talked to Tigger for over an hour -- IN ARTICULATE, ORIGINAL SENTENCES THAT DEMONSTRATED EMPATHY.

Here is a sample from a video we took (as soon as we recovered from our shock enough to realize we should be recording this momentous occasion!)

"I'm sorry Tigger. It's okay. You're trapped. Be quiet. Time to go to sleep. Let's take a nap." Then, when Tigger hopped onto Simon's rather small toddler bed: "Tigger, you're too big. You sleep on your bed (pointing) over there. Time to go to sleep." Tigger didn't budge. Simon sat, thinking for a moment, and then he finally decided to give Tigger his nightlight and lay down with him. (I can't overstate how shocked we were!). Finally, Simon sang a song to Tigger that he sings to himself when he is scared at the doctor's. Within a few more minutes, they were both asleep. 

Now, I had heard about service dogs being used to encourage language and empathy in kids with autism. I'd heard that kids who were otherwise inarticulate and friendless were able to gain both language skills and a bond of love when paired with the right animal. I honestly never really believed it. Though I hoped that Simon would find a friendship of sorts with Tigger, I have been so completely focused on Tigger's potential to protect Simon during one of his dangerous status seizures that I really considered anything additional a pleasant but unlikely and less necessary bonus.

I LOVE BEING WRONG.

Today, we took Tigger and Simon out for the first time on our own to buy a bed big enough for the two of them.

Good Things to Come

I am SO excited! Over the past couple of weeks, Simon and I have found out about so many cool things, heard great news, and have gotten the ball rolling for lots of awesome stuff just over the horizon.


On the cool things front, this potential development in treating status seizures has me really excited.

Super speedy life saving meds!

It is an epi-pen like device that a caregiver could use to deliver effective medication as soon as a seizure goes past the 5-minute "normal(ish)" window. As you may know, the sooner you can treat a "status" seizure, the better chance you have to stop it before it becomes life-threatening. Right now, the options for this sort of immediate treatment aren't great (rectal diastat is what we've been given) and aren't totally effective in practice. A different medicine in a more convenient and effective delivery method are a really awesome advance that I can't wait to get my hands on!

Footwear with awesome hardware!

Another cool thing is the new AFO (ankle foot orthodic) that we have ordered for Simon. Simon has had an AFO for a couple of  years now, and we replace them as he outgrows them. This time, instead of being directed to our usual (slightly sketchy) orthodic equipment shop, we were able to get our casting/fitting done at Kennedy Krieger. The difference in treatment and options was like night and day, and I am (again) feeling so blessed that we have access to such great resources for Simon. Our new AFO will be hinged (articulated) and should allow him a greater range of movement. Of course, this also means he may run faster and be harder to catch... hmmmm....

Torture.. I mean, therapy!

In more cool bionic Simon news, we have been "restarting" the CIMT (constraint induced movement therapy) program with our therapist at KKI in a reduced capacity. Since completing the program last winter, Simon had been using lefty as an assist pretty frequently, and he had maintained the gains for what we were told was a record amount of time. However, over the past few months, we've noticed the tone in his hand re-tightening and he has been using it less and less. So, with the support of our amazing KKI therapist, we've made a new cast for his "good" arm and (instead of wearing it for a month solid) we are having him wear it for therapy sessions and therapy "homework" sessions a few times a week. The really amazing thing is how quickly he is regaining the ground he lost. The last time we participated in this therapy it took weeks to manage a pincer grasp, this time he was pinching and dropping marbles and goldfish crackers within hours!

Super dogs in training!

In the area of great news -- guess what!?! TIGGER IS PAID FOR! Yes, I thought it was a mistake at first, too. But no, through the incredible amazing awesome mind blowing humbling I-cry-every-time-I-think-about-it contributions of our friends and family (and their friends and family), and some folks I don't even know but who have heard about us and our Simon, the CEO of Noelle's Dogs Four Hope was able to call me last week and tell me that (barring a grant we are in line for from the Chelsea Hutchison Foundation), Tigger's account is settled.

AND THAT'S NOT ALL! The art students of a local middle school voted to donate the proceeds from their upcoming auction of student work at the school's “Art Night” towards Tigger. We are going to use those proceeds to help pay for Tigger's final training trip to Colorado (where he will complete training and take the official test to become a certified service dog!).

I am (in a rare moment) struck speechless by the incredible way our community has embraced us and our little guy. As I said in an earlier post, the most surprising and amazing thing to come out of this journey has been to find out how blessed we really are, and how much love surrounds us. THAT is what I know is going to keep me going when times get tough. One day, when Simon can understand, I cannot wait to tell  him the story of how Tigger came to us by way of love for him. (damn, now I am crying again.)

Love Triangle

And, finally -- awesome stuff on the horizon! Simon qualified for Music Therapy at school. I found out about the therapy almost by accident, I just happened to be in the classroom when the therapist (who is only at our school a day or two a week) came in to work with another student. I was intrigued -- Simon LOVES music and has a great memory for rhythm and rhyme, so I the idea of using those strengths to work on other therapeutic and academic areas of need seemed just plain brilliant. I did have to push a little to have him evaluated, but once he was it was immediately apparent that it is a great fit for him. Being able to incorporate it into his IEP feels like a mini victory and I could not be more thrilled to see what benefit this brings him.

Another exciting thing to come is an inclusion summer camp! I've been struggling with what to do for the kids this summer -- our fantastic babysitter is headed to Thailand (!), and Simon may be participating in a 4 week "booster" program at KKI with the dates still undecided. I've been thinking about looking for a new sitter to help in the interim (I probably should do that no matter what), but I also really wanted both kids to have a chance to get out of the house, have fun and interact with other kids for at least part of the summer. Camp seems a natural choice ... finding a camp is the problem. For Olivia it is a snap -- if anything there are too many options (art? math? music? adventure?), but finding a camp to fit Simon is a bit more complicated. Last year, I attended camp expo (where we found League of Dreams which I am SO looking forward to this year!) without much luck. Since then, I've continued to search, but so far the options I have found for kids with special needs like ours are few and far between (sometimes literally far). Just make things MORE complicated, I really didn't want something exclusively special needs -- Simon has done so well integrating with his typical kindergarten peers that I was hoping for a mix of kids where everyone was, well, included, but still cared for as needed.

I was starting to think that this didn't exist UNTIL I was in (another) IEP meeting last week discussing ESY (extended school year) options with Simon's team. While expressing my concerns about typical ESY (which are another post unto themselves) a couple members of his team had an "aha!" moment and suggested a grant-based inclusion camp through our school system. Our new music therapist is one of the primary instructors and (I've already decided I love her) she was nice enough to tell me about the camp and get BOTH Simon and Olivia onto the list. I am over-the-moon excited. This is a true inclusion camp with lots of fun activities, camp themes, and cool stuff to do. In addition, many of the "typical" kids are sibs who not only get to have fun alongside their "special needs" siblings (not a situation you always encounter), but they get to meet kids from other families like their own. Seriously, how cool is that?!

SO, stay tuned Simon fans! With so much progress, so much support, and so much to look forward to it is going to be a very exciting Spring!

Mommy Guilt

 

Midway through this afternoon I was already tired and grumpy. I was trying to cram about 2 days of work into a half-day because I needed to take Simon to KKI at 3; to be examined and casted for a new AFO (Ankle Foot Orthodic) brace since he has outgrown his current one. After this, we were to have an OT appointment. Needless to say, I did not finish my work and knew that I'd be playing catch up after the kids were in bed (no, I'm not caught up yet... working on it... sheesh.)

I finally stopped feeling sorry for myself about mid-way through Simon's casting. I think it is fair to say that this process is one of his least favorite, and I can't blame him. The kid never knows how long we're really going to leave that cast on (see earlier therapeutic activities for his justification). He is upset, freaked out, and overall majorly stressed-out by the whole affair. 

I couldn't help but feel badly for him. To regret (yet again) all that he has to endure. My head knows it is all for very good reason, and as he cries and asks for help, and struggles to be good and stay still despite his apprehension, I repeat this mantra to myself for sanity's sake. But my heart still aches for him. 

For such a little guy, he copes with so much. Today alone he managed a full day of school, including speech therapy and even physical therapy during recess. Then, I picked him up (he optimistically asked if we were going home, though he knows that it means an appointment when I pick him up from school) and took him downtown to Kennedy Kreiger. There, he was examined by PT and casted for a new brace. Directly following, he participated in a particularly tricky hour of OT. We came home, had dinner, and did a bit of his homework. Then time for a bath and bed. Tomorrow, back to school and therapy, and after school (you guessed it!) another session of private therapy. Speech, this time.

My tough guy is developmentally only three. It's hard for me to realize that and compare his "3-year-old experience" to what I provided his sister -- half days of utopian montessori preschool followed by plenty of mommy time, grandma time, and lots of fun outings and activities. Sure, education was important, but Livy's life was largely about being little, being loved, and having fun. It was a blast for both of us, and a sharp contrast to Simon's day-to-day.

Yet, Simon does have fun; he's a happy guy and a lot of effort is made to make learning and therapy playful for him. But his days are long, and he struggles to get through them. He often tells his aid and teacher that he misses mommy and wants to go home. And Simon is definitely loved, by just about everyone --- his family and friends, as well as his teachers and therapists. In turn, he loves everyone around him with a no-holds-barred-open-hearted affection. Everyone works hard to find the best way to help him, to work with him, to help him grow and develop. But, Simon works hardest of all -- today in OT I watched his entire body contort with effort as he struggled to pick up a jelly bean with his left hand. He is so tough, so resilient, so determined and persistent.

I know that Simon making great progress, and we all have so much hope for him to go further still. I know that we are doing what is best for him, but I also know that he is just my baby, and sometimes, I wish I could do just that -- simply let him be my baby. To be little, to have fun. To be free.

Echo Bridge

Despite a thorough scrubbing, my stairs are still covered with sticky glitter. Earlier this weekend, a small boy tried to roll a snow globe down them. I don't think that it worked out quite the way he thought it would... and so, Simon learned the hard way that glass doesn't bounce.

The crash was pretty spectacular, and I think he knew right away he'd done something wrong. I immediately swooped in to save him from any shards, and after I'd checked him over (he was fine), I sat him down on a chair while I went to clean up the mess.

A few moments later (and a lot sparklier), I retrieved Simon from where I'd planted him. He'd stayed put in the chair and was crying pretty hard. I hugged him in my lap and told him he was okay. We took a few deep breaths together, and as soon as he'd recovered himself he began to tearfully recite a bit from one of his favorite Winnie the Pooh stories; falling back into his "normal" echolalic behavior.

As I held him, I realized that he was reciting from the episode about Rabbit's vegetable garden -- Tigger had bounced all over it and ruined Rabbit's rutabagas. Simon was repeating Tigger's apology to Rabbit, over and over again.

"I'm really sorry, Rabbit.... It's okay Tigger, it was an accident.... Thank you, Rabbit..."

Then, gradually, it turned into... "Simon is sorry.... It's okay Simon, it was an accident..... Thank you, Rabbit."

I realized that Simon was trying to apologize to me. He was connecting Tigger's mistake to his own, and Rabbit's reaction to mine. He was using the "social story" the episode provided to find the right words to tell me how he felt. Suddenly, the echolalia wasn't just repetition, it was an actual echo of his own meaning, his real intention.

I've imagined before that Simon's communication disability is like a vast body of water, making him into an island I can't quite reach. Although I'm still looking for a ship to navigate across it, in the meantime, perhaps I've found a bridge.

Included

Simon's classmates made him this poster when he was in the hospital this October.

I just got back from spending the morning at Simon's school. We had a scheduled IEP meeting this morning to discuss assessment results (one of many meetings this year, since we are in an "evaluation year"). We met with most of Simon's team -- The IEP coordinator, the inclusion teacher, the special education teacher, the speech language therapist, the occupational therapist, the physical therapist, the guidance counselor, and the school nurse. Missing, but planning to be at our next meeting in 2 weeks were the physical education teacher, the music therapist, the adaptive technology specialist, and the school psychologist. 12 people (not including Brian and I). It was a crowded room, and I was pretty worried that I wouldn't have enough of the cookies I'd baked to go around.

Today's concerns about pastry portions are a far cry from my feelings a few years ago, at our very first IEP meeting to discuss assessments and make recommendations. Then, I only knew one person in the room and I was very intimidated -- fearful that I would say something wrong that would negatively impact Simon's plan, that I wouldn't understand what was going on and would be cut out of the decision making, or that I would sign off on something that proved to be a bad decision and I would be stuck with the consequences.

Most of all, I felt alone.

Being the parent of a special needs kid can be a very isolating experience. Despite their best efforts, most of the people you are close to can't relate to what you are going through, and many of the specialists you turn to for help have a myopic view of your situation and your child. You often feel that no one sees the whole picture; who you are, who your child is, and you struggle to find the words and ways to explain something that seems complex and overwhelming even from the inside. As your child grows, your worries about isolation grow, too. Your child's safety and quality of life come into question; "How will they be okay when you aren't there? Will they be able to make friends? Will other adults see how amazing a person they are? Will they be able to get the care they need when they can't speak for themselves?"

I still worry about Simon. But, over the past three years, when it comes to his education, some important things have changed. At today's meeting, I was surrounded by a team of specialists that all know me, and know Simon even better. They've seen him on his best days, and his worst. They know his strengths and they know where he needs help. They were open to each other's ideas and they were receptive to mine.

I've also gained confidence in my role as advocate and Simon expert. I'm always asking questions, troubleshooting, and putting forward ideas, and I have found that -- far from being excluded -- this is welcome. Even when I disagree with someone, the team encourages me to be involved and gives Brian and I a lot of credit for being a key part of Simon's success. We've been told that they wish that more parents would do the same.

Realizing how far I've personally come was a great gift today. However, the best part of today was listening to Simon's team talk about him. They said they found him amazing, that they were proud of him, that they were concerned about him, and that they had hopes for him. More than once they called him "our Simon." They told funny stories about him (like when he pulled the fire alarm), and shared sweet moments (like when he read them his first book and made his preschool teacher cry).

After the meeting I hung around to watch Simon on the playground and at yoga time. He was surrounded by other kindergarteners that don't just tolerate him, nor do they just accept him in the pack. The other kids were constantly looking out for him -- helping him wash his hands after using the bathroom, helping him play and seek out interaction, helping him follow the rules and pay attention. Though I believe that kids are intrinsically good, I know that these children have been taught, through constant modeling and instruction from the adults, how to interact with Simon and the other special needs kids in the school. Simon's inclusion teacher and aid are particularly good at this, and the result is a community in which everyone helps one another. Sometimes, like at yoga time today, older kids with special needs help younger ones. Everyone is needed, important, included.

And I came to realize that Simon isn't just MY child. He belongs to them, too. His classmates, his teachers, his therapists. He belongs to our friends and family that have contributed to the seizure dog fund. To the people that cheer for his accomplishments when I crow about them on facebook. To you, dear reader. Simon belongs to everyone that cares about him and helps to keep him safe.

I've never been so happy to share.

So the mermaid says to the frog...

"Do you hop?" And the frog, being agreeable, demonstrates. "hop, hop, hop!"
Good job!" says the mermaid. "Let's do it again!" And the frog, ever accommodating, complies.

For about the last six months, Simon has been using his toys to reenact scenes from favorite TV shows. This was pretty exciting in and of itself -- he was talking, a LOT (I'll take language in any form!), thoroughly entertaining himself, and lately he's added dramatic vocal inflection. The most exciting part, however, was that it  seemed like he was practicing -- getting ready to try playful interaction; to create a 2-sided dialogue of his own.

Over the weekend, I noticed that Simon was playing with toys in a slightly different way. He was talking ABOUT them. Not reciting, not repeating. He was also more specific about what he wanted to play with. When I gave him his pirate captain, he told me he wanted the pirate's friends, too.

Wow, I thought -- that's different. Simon is becoming aware of friendship -- and he likes it! How incredibly amazing, wonderful, miraculous...!!!  I found a few more crew members and Simon sang some pirate songs and I looked on feeling more optimistic than ever. I've been avidly eavesdropping on his playtime utterances ever since, looking for more glimmers of spontaneous social awareness.

My rapt attention was rewarded tonight -- frogs and mermaids have never been more eloquent. There were just a few lines, but they were all Simon's own.

Have your cake, and eat it too

One of the best things about being a special needs parent (yes, you read that correctly) is that you don't take the little things for granted. Small advances, so minutely incremental in the development of typical children they go practically unnoticed, is the stuff of miracles for a parent that has been praying for progress.

This past Sunday was full of such miniature miracles, and a lot of zucchini. Actually it was the zucchini that started the marvelous episode -- I had a plethora of the veggie lying about, so I decided to bake it into a chocolate cake (something everyone will eat!). As I leaned over the oven to check the done-ness of the cake, Simon wandered into the kitchen and the miracles started rolling.

Miracle #1 (which actually started a couple months ago), Simon ASKED A QUESTION;

"What are you DOING Mommy?" He asked.

"Baking a cake," I replied.

Miracle #2: Simon expressed interest in the task, and MIMICKED what I was doing. He took some oven mitts and put them on his hands, and he peered into the oven expectantly.

"Look, Mommy! Wow, cake! You want to make a cake!" (sometimes he gets his pronouns mixed up)

Miracle #3: Simon PRETENDED. Since the cake was already in the oven, I pulled out some play food and pots and Simon "made" a cake. "Look, Mommy! I make it!"

Miracle #4: Simon told me he wanted to add sprinkles to the cake, but he SPECIFIED that he wanted to do this on "Mommy's cake." I quickly iced the real cake and pulled out some rainbow sprinkles. I put Simon on a chair and handed him the sprinkles and he HELPED decorate the cake. Afterward, he was PROUD of himself. "I did it! I make it!"

Miracle #5: We cut the cake, and Simon ate the whole slice WITH HIS FORK. Slowly and carefully, he speared each bite and even closed his eyes as he chewed.

Miracle #6: To wash down the cake, I'd given Simon some milk. Instead of grabbing the cup one-handed as usual, he actually grasped it with BOTH HANDS and raised it to his lips, taking a long sip (an appropriate reward for a job well done). Then he set it down, carefully and evenly with both hands.

Best cake ever, don't you think?

Stick a Fork In It

One of the most perplexing things (okay, one of many "most" perplexing things), about raising a not-very-verbal kid with physical challenges is being able to tell the difference between when he CAN'T do something and when he WON'T do something.

Take, as a prime example, our relationship with cutlery. As a parent, I know it is my duty to instill at least a baseline of table manners into my children, so that one day they may be welcome to the table of people with potential import in their lives. Not to mention the fact that it would be nice to have a meal with the kids that doesn't require a bath afterward.

However, after many failed attempts at introducing forks and spoons, Brian and I had sort of given up on it. Besides, there are few things that can't be converted into acceptable finger foods, and Simon is so small that he generally doesn't raise any eyebrows when we dine out and he eats with his hand.

Sadly, we are aware that the clock on this grace period is ticking, and so, this past Saturday, Brian put on a brave face and decided that it was time to re-introduce the FORK. I have to admit, I wasn't completely on board. It was Saturday morning and I had yet to finish my coffee, "Is this really necessary?" I whined. I reminded Brian that, once you start this sort of crusade, you really can't abandon it. It becomes a matter of sheer will, a battle that as a parent, you MUST win (no matter how many years later), because to lose this would mean a lifetime of meals resembling that scene from "The Miracle Worker"...

We know that from a fine motor standpoint use of any tools like this is challenging for Simon. He has trouble manipulating crayons, using scissors, threading beads, connecting legos, etc. We've worked on these skills in OT, and continue to do so, but we haven't really pushed the utensils. It just seemed like making his ability to feed himself more difficult was kinda mean. The kid already has a lot to cope with, why add to it?

But, I had to agree with Brian, the time had come. We owed it to Simon to try to civilize him.

Steadfastly, Brian poured me some more coffee and presented Simon with his favorite breakfast in the whole wide world.. the BIG breakfast from McDonalds, which, believe it or not, my 34lb son can totally pack away, shoveling it in one-handed with gusto.

Exicted, Simon ran to the table, only to fall off his chair in a total and complete tantrum when we presented THE FORK and insisted he use it. We'd pre-loaded it with his favorite part (sausage), but even that wasn't enough and he actually tried to remove the sausage from the fork rather than raise the offending implement to his mouth.

About a dozen tantrums later, we reached a compromise of sorts. I'd placed three forks on his placemat -- each one loaded with a different food. Eggs, pancakes, sausage. "Simon," I chirped in my "Mommy is happy and calm no matter how much you freak out" voice, "look, you can CHOOSE which fork you want. What do you want to eat? Simon can CHOOSE HIMSELF."

Simon was tired, and hungry. This tiny semblance of control was just the olive branch he was looking for to be able to pick up the fork with dignity. He chose sausage. I reloaded. He chose eggs. I reloaded. Pancakes... you get the picture. We did this for a while, and as he settled into the rhythm of it he did something that shocked us.

He took his empty fork and speared his own sausage, thank you very much.

We're still working on it, and it is pretty frustrating for Simon. (FYI, cheese curls are exceptionally motivating and easy to spear). But it is one more step towards ability, and I find that exceptionally motivating for me.

Questioning Angels

I think I heard the angles sing today... Actually, what I heard was better. Simon asked me a question!

I put on my jacket to go to the store, and (like it was no big deal at all), Simon looked at me, tilted his head slightly to the side, and asked; "Where are you going?"

Practically struck dumb with surprise, it took me a minute to answer (while blinking rapidly and thinking I should pinch myself, my dreams have been pretty vivid lately).

I replied, slowly (as though I were the one speaking in a foreign language); "To the store. Do you want to come?"

Simon gave me an apraising look before answering with a simple, "No."

I desperately wanted to keep it going, so I turned to his favorite subject -- food. "Do you want me to bring you some lunch?"

A smile. "Okay. Pizza!"

I imagine this is a conversation Mom's have with their preschoolers every single day. And, if you didn't know us, this exchange would likely seem mundane (at best). Question...answer... basic communication... a couple sentences. Hardly worth trumpeting.

But -- !!!!

Questions! Answers! Reciprocal communication! Complete Sentences!!!!!!!!!!!!

Why did I never learn to play the trumpet? Surely a long, loud, triumphant peel of resonant brass sound would relieve this pressure -- I'm so full of hope, I could burst.

Dreams

I've had a lot of babies happening around me lately (congrats all you new mom and mom-to-be buddies!), so it isn't too surprising that last night I had a very vivid dream about having another baby. In the dream, childbirth went exceptionally well and all was calm and happy -- sort of the opposite of when Simon was born. And I was thrilled -- until the dream nurse put the baby in my arms. I looked down and saw Simon (his newborn self).

"Wait!" I said, "I already had this baby -- and he is a little boy now."

"I know," said the nurse "but this baby is perfect -- no brain damage. You get to do it over!"

At that point, the dream turned into a nightmare. "No," I cried, "I want my son back -- my Simon. I love him just the way he is, and he is perfect. Don't take him away from me."

I think, for the first time ever, I was happy when Simon woke me up at 5 am to climb into bed with me. The dream faded and I held him close. As he snuggled into me, I knew that I really wouldn't change a thing. Though I both pray for and work towards miracles every single day -- to me, he is perfect, and I will always love him just as he is.