Monday, December 12, 2011

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.

Monday, October 24, 2011

Tigers, Dragons, and Dogs

Have you read, or heard of, the "Tiger Mother" by Amy Chua? I'd be surprised if you hadn't (it was quite the meme), but, in case you have not, it is the autobiographical account of one mother's decision to raise her children the "Chinese way" (her words).

According to the Chinese zodiac, those born under the sign of the tiger are brave and fiercely competitive. As a "Tiger Mother" Chua accepts nothing but excellence from her children in everything from grades to handmade birthday cards. She is uncompromising, and to a degree successful. Her children have straight A's and one even made it to Carnegie Hall. As justification for her methods, Chua says that she chose to do things the way she did because she believed that her children had the potential for greatness, and that to expect anything less was to insult them.

When I read the book last summer, I honestly had mixed feelings about the Tiger mom approach. On the one hand, some things she recounted were so far from the norm you had to question her soundness of mind. But, on the other, I've always been very hard on myself, and being the mom of a "gifted" child that I sometimes see myself in, I can understand the temptation to carry that impulse over. To push my daughter to where I know she can go, and not accept anything less.

Except, I have to pause at that word... accepting. Learning to accept the way things are has been a key part of my experience as the parent of my other, "special needs" child. I may not like, or want, the challenges that he has been dealt; cognitively or medically, but I have learned that in order to cope with them or move beyond them, I have to accept them. They are a part of our family. To deny that through stubbornness or anger would be just as ludicrous as turning away the truth that Amy Chua missed out on through her willful blindness to the more basic kinds of love her children were offering. To be heartfelt is to be perfect.

Last week, when a friend posted the article "Notes from a Dragon Mom" by Emily Rapp, I immediately got the fiercer-than-a-Tiger reference. It also stood out to me because my Chinese zodiac sign is that of a dragon (something I've always been secretly pleased about -- dragons are cool! Way better than Brian's sign of a rat...).

I knew that dragons were said to be passionate, creative, and unafraid of challenges, the flattering characteristics I liked to associate with myself. However, it wasn't with so much pride as with a touch of sorrow that I understood the perspective of the writer. Rapp knows that she is going to lose her 18-month old son to a terminal illness, and she has learned how to keep going and be a parent despite that heartbreaking knowledge. To quote the article:

"This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice."

Though (I thank God every day), Simon is not terminally ill, living with the understanding that he is at risk of being suddenly taken from me (more than what we all fear from the daily unknown of accidents or freak illnesses), has already changed me in ways I hadn't really stopped to understand. Like Ms. Rapp, I have come to realize that the "new normal" Simon's doctors have repeatedly told me I will get used to is something else entirely.
I now know that I have to accept it, to become a fierce new animal. A fire-breathing dragon mom, burning away the expectations for love's sake alone.

And, in its way, this could be a freeing revelation, if it weren't for that tiger mother in me. She is pretty fierce as well, and I cannot completely change my stripes. Just as I know I have to accept an awful truth, I also know I have to get over it.

I have to learn to tight-rope walk between these constellations. Between accepting what is and reaching for what can be. I know that both of my children have the potential to be great, but I also know that they are great the way they are, without qualifiers or contraindications. Without expectations. I have to take both challenges and triumphs, one steady foot in front of the other.

Which is great. Except, sometimes, you fall. And, when I fell this last time, I didn't think that there would be a net. I'm as stubborn as a tiger. Like a dragon, I don't know how to ask for help. 

So, you can imagine my surprise when a dog broke my fall.

Researching options to prevent the unthinkable, I discovered the Chelsea Hutchison Foundation -- another organization created to raise awareness for SUDEP, in the name of a child that died too young. Chelsea was 16, and the doctors never told her parents that a seizure could take her life. Her fierce Dragon parents are now trying to help others with epilepsy, through raising funds to help pay for seizure response dogs. 

I immediately contacted the foundation to find out more, and graciously, Chelsea's mom emailed me right back. She was glad I had gotten in touch with her, and she was happy to help. She told me about the benefits of service dogs and I felt the first real surge of hope I'd had in many weeks.

It was on this high that I reached out in a simple facebook post, just asking if anyone knew anything about service dogs. I had no experience with them, and googling had only gotten me more confused. I was hoping to hear from someone that perhaps had second-hand experience, or had heard of something locally. I was hoping for a place to start more research, but what I got was so much more.

It seemed that, after finally breaking my cyber-silence with last week's post and this simple request, everyone around me was just waiting for a call to action. Dozens of friends commented -- some to just offer encouragement, and some with truly great contacts. A college friend (thank you Wilson!) connected me with his partner's mom, the founder of St. Francis Service Dogs and a truly warm and knowledgeable person. She spoke with me for over an hour about my son and what a service dog could do for our family. Though she couldn't help me (they don't serve our area), she told me what to look for. Ultimately, it was an organization suggested by the Chelsea Hutchison Foundation that came through for us.

Though I know that I may not have completely changed our situation -- we don't yet have a dog, and even when we do, I know that a quick response alone won't change the potential of a seizure ending Simon's life (though we hope it decreases our risk some, particularly for asphyxiation). I know this, but I also finally feel like I'm on the road to doing something positive, something proactive. And, I realize that I'm not alone. I had turned to our doctors and specialists for help and come up empty handed. Over and over again. I turned to my friends and family for help, and not only did I come up with many truly helpful hands, I've come up with more support and love than I could imagine.

According to the Chinese zodiac, dogs are loyal, compassionate and kind. I've also discovered that they might well be able to calm the roaring of a heartbroken dragon, and the growling of an angry tiger.

Sunday, October 16, 2011

Keep Calm and Carry On



My very favorite mug bears the British WW2 poster slogan "Keep Calm and Carry On," which was meant to be a last bit of encouragement from the monarchy, a reminder that life goes on even in the face of a potential invasion by the Nazis.

There are many reasons that I like this mug so much. It has a cool design (nice typography!), and I am both a history buff and a slight anglophile. But, most relevant is the fact that, speaking from a personal history perspective, this pretty much sums up a key "Laura" trait. When I'm under a lot of stress, my main defense mechanism is to become rather stoic -- whatever it is that has me twisted into knots -- I feel that there is no need to think about it, analyze it, or discuss it (or, in the case of this blog, write about it) -- I just get through it. By keeping my eyes ahead and my mouth shut I'm convinced I will see the light at the end of the tunnel that much sooner.

It is a strategy that has often worked for me, though there are times when I've way over-surpassed my capacity, and I do succumb to a melt-down. But even this I prefer to do privately, usually in the shower where no one can hear.

I had my last melt-down about 15 minutes ago after reading that the child of a fellow special-needs blogging parent died in his sleep due to a seizure. My heart broke for them, and for me. It is in the wake of this honest, cleansing cry that I finally feel like I am ready to write about what has been going on here - something my husband has been encouraging me to do for a few weeks now.

First, let me get some things straight -- life hasn't been all bad, in fact much of it has been great. Brian started the graduate program he was hoping to get into, and he loves it. I've been very busy with all good projects (which is a huge feat for a self-employed gal like myself), and my semester has started off well. Olivia is enjoying both 3rd grade and her first team sport -- field hockey! And, best of all (for this mommy), Simon has been doing really well in kindergarten. Both his teacher and his aid are incredibly wonderful and supportive, and they are truly invested in making his experience both pleasant and successful. With all the anxiety I felt over the kindergarten transition, it is more than I could have hoped for (expect a post later more about school and what I think is making our inclusion setting work).

So, what am I freaking out about? Well, aside from having enough going on to make our little family truly crazy busy (my calendar is a mess, I have to color-code it), and aside from the stress of two very over-worked parents, there has also been enough "really scary bad" thrown in to tip my coping scales into a stoic silence.

 You see, I've been terrified of losing Simon.

A few months ago, after seven months of being well-controlled, Simon started having break-through seizures and frequent bouts of sudden vomiting. After LOTS of blood work came back inconclusive, we tried increases in medication. So far, they haven't help the seizures (though the vomiting stopped).

Within this, I noticed an alarming pattern; Simon's partial seizures were happening while he was sleeping and they always included him vomiting. Though we have a video monitor on him at night, the partial seizures only involve facial movements and are virtually silent. Even the vomiting is silent, it just pours from him without any of the normal retching you'd expect. I feared that he would have one of these seizures at a time when we were all too deeply asleep to catch the slight noises on the monitor, and that we would wake to find that we had lost Simon due to asphyxiation.

As soon as I realized this, I contacted every doctor and medical professional I knew to help me find a way to protect him. I thought that there MUST be something to detect a night-time seizure and/or distress.

At the same time, I began researching like crazy on my own and I came up with some rather striking disoveries. I learned that there are syndromes within epilepsy, and that one of these syndromes seems to fit the variety of seizures Simon has -- including the vomiting, which, as it turned out, could likely be a form of autonomic seizure activity occurring in the occipital lobe.

I also discovered that I am not the only parent worried about losing their child due to a seizure at night. I found many stories, personal ones told on list-serves I belong to, a foundation in the name of a child that died -- the Danny Did Foundation in Chicago -- and some major news articles including this article from the NY times and this article from Newsweek talking about "Sudden Death in Epilepsy" also known as SUDEP. Mainly the articles focused on how little is being done to understand epilepsy, how SUDEP is virtually undiscussed by the medical community (in fact, there is a stigma against discussing it with parents and patients, thinking the anxiety the knowledge can cause will lessen the quality of the patients' life), and how, especially in the United States, there are no real options available for the detection of nocturnal seizures and, thereby, prevention of death either due to a prolonged status seizure (with can cause renal or heart failure, as well as brain damage), or due to suffocation or asphyxiation occurring while seizing.

I emailed our Neurologist with my findings. She agreed with my diagnosis on the vomiting and the relation to occipital seizure activity (I'll be sending her a bill for my time and expertise later). She also (somewhat sheepishly) acknowledged that yes, SUDEP is an issue, and no, she had not discussed it with us because there was nothing we could do about it and she didn't like to upset parents. She compared it to SIDS, in that the deaths are a bit of a mystery and there is a limit to what prevention can do, if anything.

I admit that I was sorely tempted to throw a complete raging fit. WHAT DO YOU MEAN MY SON COULD DIE AND YOU DIDN'T TELL ME AND THERE ISN'T ANYTHING THAT CAN BE DONE ABOUT IT? Instead, I kept calm and reasoned with her. In the case of SIDS, I said, parents are made aware and there ARE both preventative recommendations and things like apnea monitors for parents to make use of. Shouldn't a similar protocol be in effect in this situation?

She didn't disagree with me, but she did say that no such protocol existed. There are no recommendations. There are no monitors. All she could offer was to tell me that other parents in this situation find it similarly stressful, but that we have to learn to live with it.

All of the other doctors and medical professionals that I knew agreed with her. There was no one to help me. I deeply sensed the reality of an impending unthinkable disaster.

Well, F#@& THAT. This momma is going to carry on. (Okay, so I did give myself over to one or two fits of hysterical crying in the shower. It was necessary.)

The only way I know to carry on is to do more research. A lot more. I came across an article on Epilepsy.com "Nighttime Siezure Activity: Will your family every sleep peacefully again? " (the answer is "no," by the way), that talked about what we are dealing with. While the motion monitor in the article won't help us with Simons' still-bodied partial siezures (yes, I called the manufacturer to check), it got me thinking about re-purposing other kinds of alarms. To help narrow my search, I spoke with a nurse at Kennedy Krieger about what physically happens to a person during a seizure, and (light bulb moment!) the heart rate goes up abnormally and, if in distress, the blood oxygen level would go down abnormally. What I needed was a pulse oximeter with an alarm. Eureka!

So, I called the neurologist and pediatrician and asked them to direct me to one. Once again, no help. They said that there was nothing that was FDA approved for the use I intended to put it towards. They suggested I try ebay. Or amazon. They offered to write me a script if I found anything to help with insurance costs.

Again, carry on.

I searched and, to be honest, last week I just ordered my THIRD device (anybody want a slightly used pulse oximeter?). In this quest I was on my own, and therefore a bit reliant on trial and error. The first two devices were more made for adults and Simon's tiny finger was too small to get a reading. We visited the Neuro in person last week, and this time, when I dumped my useless gadgets on her exam table and looked her directly in the eye, telling her I refused to lose my son this way, she had a harder time brushing me off. She wants to try an apnea monitor used for sleep studies, and we are currently trying to go through insurance to get it.

In the meantime, I had been watching Simon's video monitor like a hawk. Sleeping at all had been hard, and it was wearing on me. My anxiety was ratcheting to what I knew were unhealthy levels, but I could not shake the feeling that something bad was going to happen.

 And then it did.

Wednesday, Simon had a slight fever, which we know lowers the seizure threshold. After I gave him his medicine and put him to bed, I placed the monitor on my desk while I went back to work. About 20 minutes after he fell asleep, he had a seizure. I heard the little chewing noise, saw his open eyes on the monitor, and I ran upstairs. By the time I had yelled for Brian and vaulted the steps, he had already vomited. He was lying on his back and choking.

Thank god I am a neurotic, persistent, pain in the ass. After his first seizure I had demanded a script for a suction machine (reluctantly given by the pediatrician since it is not seizure protocol), because I was afraid of just this scenario. We keep it set up in his room and we were therefore immediately able to suction his airway clear (though we later found out he had aspirated enough to lead to aspiration pneumonia). We timed the seizure and because it went past 5 minutes, we administered the emergency Diastat and called the paramedics.

To make what is already a ludicrously long story shorter (sorry, brevity is not one of my strengths), I will summarize what happened over the next few days. Simon's seizure became another status episode and he seized for over two hours. Once again he needed to be in intensive care to monitor him after the massive dose of drugs administered to stop the seizure to prevent it from killing him. And, once again, I am profoundly grateful that he has come out of it okay and is now resting and recovering at home.



Despite the disturbing sense of déja vu, I am also grateful that this time I am better educated. Last time, everyone panicked. The emergency room doctor, in her desperation to stop the seizure, gave him so much phenobarbital that it nearly killed him. I remember standing beside the gurney with tears pouring down my face, helplessly thinking I had lost my son. This time, I was calm and in complete control. I was able to prevent the prolonged medical coma he was in last time by directing the emergency medical team on specifically what medications they should and should not give him, and I made sure to get our neuro team immediately involved and had him transferred to their care.

While at our world-class "home" hospital, I used the opportunity to grill EVERY SINGLE medical professional I came into contact with about what I can do to prevent a recurrence in the future and have come up empty handed. Some doctors apologized and told me that they knew the situation sucked. One coldly told me that there needs to be "more of a market to warrant developing such a device." Everyone told me that I was doing the best I could and that I should, over time, learn to live with it.

I am living with it. I know that this is going to happen again. And again. I will keep calm, BUT, I refuse to believe that there is nothing I can do. I will not let this go without one hell of a fight.

The third pulse oximeter I ordered just came yesterday. The only devices specifically for kids are clip-ons and we are trying to find a way to make sure it does not come off of his hand at night. At least this one gets an accurate reading. That is something.

Carry on.

Thursday, August 18, 2011

A "special" trip to Nordstrom

Or... "Swanky Special Needs Kids Stuff."

Usually, I am all about saving cash, especially when it comes to kid stuff. They just grow too darn fast. (okay, and I'm kinda cheap... nothing makes me happier than scoring a deal in the clearance section of the discount store!). But, sometimes, you get what you pay for.

At least that was the result when, couple of weeks ago, I succumbed to the potty watch. We've been working on toilet training Simon for about a year or so now, with gradual improvement (and a LOT of patience). However, I've recently had to accept the fact that we've hit a wall when it comes to getting Simon to recognize for himself when he has to pee. He can tell us when he needs to poo, but we think that for #1, the sensation may just not be registering since he does have a decreased sense of feeling in some of his muscles. To compensate for this, we've decided to try to time-train him, for now.

Time-training simply entails putting the kid on the potty at intervals regular enough for them to stay dry. For Simon this seems to be every hour. Prior to now, I've used the pull-ups potty app to create time alerts, but with Simon going back to school soon I really wanted to introduce something that was both a bit more portable AND that started to put him more in control of "potty time."



http://www.amazon.com/Potty-Time-Watch-Blue/dp/B001AH8JNC/ref=sr_1_1?ie=UTF8&qid=1313703726&sr=8-1

The "Potty Watch" does this very well. You can set the timer for a variety of intervals and when the alarm goes off it plays a cute little song and lights up, getting his attention effectively. The price isn't bad, either, $9.99!! Total bargain. And it worked! For a week... almost 2. Just as Simon was getting the hang of it, it broke. And, frankly, I wasn't thrilled with it. It looks like a little toilet and it says "potty watch" right on the face of it. I so totally didn't want to send Simon to school wearing that; even if HE doesn't know the difference, I don't want to give other kids any reason to laugh at him.

This watch, and the only other like it (which was a bit less conspicuous), both got poor reviews for quality on Amazon. Knowing now that I am in this "time training" thing for the long haul, I wanted something that wasn't going to fall apart. My husband (something of a watch junkie) suggested a Baby G, since they have a lot of features -- one being an hourly alarm. Not the cheapest, but not the most expensive. And it WORKS, and won't fall apart (and I'm pretty sure if it does Nordstroms will replace it)! Best of all -- It looks cool and not at all like a toilet! Score.



http://www.casio.com/products/Watches/Baby-G/BG169R-8/


My other fab find of the day was a pair of Vans. I tend to go very cheap on Simon's shoes because I need to buy two of every pair. One at his normal size, and one two sizes larger for the foot with the AFO (brace) on it. I usually shop at Targét for a couple pairs of Converse one-stars. These are cute, but honestly, the different shoe size thing is awkward. To look at, to buy, and -- most importantly -- for Simon to walk in.

Being that we are approaching the start of a new school year, I browsed in the shoe department at Nordstroms to see if they had anything cool for a little boy starting Kindergarten. I also like to look there because, sometimes, the nice folks at Nordstrom are willing to sell a mixed pair to a cute little kid and his crazy mommy. I was immediately drawn to a cute pair of bright blue Vans -- they were funky and they had everything I look for in a shoe for Simon -- mainly velcro and a wide rounded toe. However, I got a real surprise when Simon tried them on. For the first time, EVER, I didn't need two different sizes! The shoe is wide and stretchy enough to fit the brace without having to go up a size.



http://shop.nordstrom.com/s/vans-mid-skool-77-high-top-sneaker-baby-walker-toddler-little-kid-big-kid/3159330?origin=PredictiveSearch&resultback=402

So, after this little shopping spree, I'm feeling pretty good about sending a very stylish child to Kindergarten. I might be an emotional wreck, but damnit -- he looks good.

PS. On a side, note, if you have been following, I don't have any news on Simon's test results yet. He went back for another round and we are still waiting. The good news, however, is that he hasn't been vomiting and we can definitely rule out the shunt malfunction for now. I'll let you know when I hear something -- I've been calling the Neurologist every day!

Thursday, August 4, 2011

Worry Doll



For the past few weeks -- ever since Simon's last seizure -- Simon has been vomiting on a pretty regular basis. Totally out of the blue. One moment he is just standing there, the next he's got a pool of.. well, you know what.. at his feet. Even the babysitter (bless her!) has learned how to catch it bare-handed.

At first, we thought that this come-uppence was due to the increase in medication (it is a documented side effect). But, after 3 weeks, we weren't so sure and neither were Simon's doctors. Last week we visited the neurologist and she threw out a lot of (scary) ideas. Metabolic disorders and shunt malfunctions were at the top of the list.

So, we got tests done and the doctors conferred and we waited. I worried. Actually, I had a total meltdown. For an entire evening I was completely non-functional. I hadn't told anyone about my worries, or about what was going on, and I think I imploded a little.

I suspect that all people are, on some level, superstitious. Not necessarily walking around with talismans and incantations -- but maybe just holding back, guarding thoughts and speech against jinxes. Whispering our fears to imaginary "worry dolls" and setting them aside, leaving them underneath our pillows to turn over quietly in our hearts, in the dark.

If we don't talk about something, it won't be.

Unfortunately, the denial/talisman tactic didn't made me feel any better. I certainly wasn't sleeping better at night, and it didn't prevent my meltdown last week.

What helped was venting, and having a good cry. Learning more, through online research and emailing doctors with lots of questions. I can't say I have eliminated the worry, but I have deflated the balloon of anxiety a bit. Which is a good thing, because, although Simon has not vomited all week (the babysitter is especially relieved), his blood tests came back with abnormal results, and so we need to get more tests done. I know that no matter what I am feeling -- if Simon needs something -- whether it is more tests, or (yikes, I am going to say it out loud) surgery, to correct or repair his shunt, I have to be together. I have to be his talisman against the scary, and the painful, and the unknown. Worry dolls don't cry.

Monday, July 25, 2011

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?

Monday, July 18, 2011

Sorted

Sometimes my life is so exciting. I'll recount a little just to make you jealous.

This weekend, for example; I went to a yoga class. I shopped at two grocery stores and Targét (that's right, with an accent, I am THAT exciting). I hosted a play date and tried out a new frozen yogurt joint. Very swanky. I did all the laundry -- and folded it. I did some work and watched Harry Potter and the Deathly Hallows part one on on-demand. In bed.

But the true highlight of my weekend was sorting through the toys in the playroom. I was possessed with a passion for organization -- a deep need to clear the clutter, and so I conquered my own personal Everest.

It only took all friggin' day.

I don't usually let it get this bad. I'd like to say that I'd let things get out of hand just because I've been busy -- which is true, but not wholly. The whole truth is that I've been avoiding this particular clear out because of what it means.

It was time to let go of the "Pretty, Pretty Princess" game. The little bouncy ride-on caterpillar. A lot of the baby books. Many of the stuffed animals.

It means that my babies are growing up.

It also means that maybe I need to slow down a little. I work so hard to help the children grow, and worry so much about how they are doing that maybe I am missing the things I will miss.

I think, next weekend, I'll put the work and chores off a bit and spend a little more time playing with the toys in the playroom. Now, that would be exciting.


Wednesday, July 13, 2011

Get Away

There's nothing quite like packing for a beach trip with the kids to make me long for simpler days. Days when going to the beach meant throwing a bikini, a toothbrush, and a sundress into a cute little bag and dashing off to lie on the sand, work on my tan, and listen to the waves; occasionally breaking routine by reading a novel or going out dancing.

Sigh.

However, despite having to literally pack everything including the potty seat; I was looking forward to our trip to the beach last week. A change of scenery, time with family, and a chance to break a bit with reality -- namely work, chores, and therapy appointments five times a week. I even imagined that I would be able to mentally relax, simply enjoy the kids, and take a time off from worrying so much about Simon's present and future.

And, it was nice to get away. I needed that whiff of sea air, and I think the kids did, too. It was great to see our big, boisterous family, and I did manage to get a tan. But, my fears followed me to the shore. In truth, I was forced to face some things I'd been dreading wholeheartedly.

One thing I was prepared for. One my nephews is only a few months older than Simon, and watching Olivia play with him in a way so different from the way she interacts with Simon hurt my heart a little, dredging up unwanted "what would life be like if the stroke had never happened...?" thoughts. But, I had known this was coming -- and I was more prepared this time than I have been in the past. I let the thoughts come, and go. I checked myself when making comparisons, reminded myself to be positive. It was a little tough when the five year old cousin started asking questions about Simon's age and ability (and was in complete disbelief when I revealed that he and Simon were both 5); but, no harm meant or done. Simon is doing well, I remembered, he's okay.

Until he wasn't okay. Monday night, after a day full of parades, swimming, parties, and fireworks; Simon fell asleep in his car seat while we were stuck in traffic on the way back to the beach house. Sitting in the front passenger seat I found myself dozing off as well, until I was woken with a jolt by a horribly familiar rhythmic gurgling noise. The last time I'd heard that noise was November -- it was that strange sound that had alerted me to Simon's first seizure, the one that had lasted 2 hours and ended up with him unconscious in the PICU for days. I whipped around in my seat to see my fear confirmed -- Simon was having another seizure.

Though I was completely terrified on the inside, and I know Brian was too, we were -- to our credit (I think); completely calm outwardly. Brian pulled over and started to watch the clock (we've been told to administer Diastat if the seizure lasts more than five minutes), while I climbed into the back seat to unstrap Simon and lean him over so he wouldn't aspirate if he vomited (which he did). I looked into Simon's wide-open, vacant eyes and spoke softly to him, and to Olivia (who was freaking out). I told them what I didn't really believe -- that everything was alright. Then, just as we were getting ready to give Simon the medication and head to the hospital, he stopped. His blank eyes suddenly met mine, and he recognized me. He took a drink of water, and went right back to sleep. We took a collective deep breath. Brian merged back into traffic, and I sat in the backseat all the way home; holding Simon in one arm, and Olivia in the other. No one spoke.

I dialed the Neurologist on call when we got back. She told me not to worry. Kids with epilepsy are going to have seizures and not all of them are a big deal. They increased Simon's medicine a little since he has grown a bit, and they told me to call them if anything else happened. We have an appointment later this month.

So, all is well that ends well. We enjoyed the rest of the trip; swimming, biking, shopping, and playing in the sand. The kids had a blast with their cousins. I did get a great tan.

But, I didn't get away from my fear, I was forced to face it. I didn't get away from worrying about Simon -- especially with the increase in Keppra, which makes his mood swings volatile, something both hard to watch and to mitigate. Instead being relaxed, I was edgy. I had moments where I simply had a hard time keeping it together.

It has been a week since that episode, and I'm coping better. Coming home felt good, safe. I've tried to remind myself to be positive, and strong, and recognize the fact that the medication and the seizures are just a part of our life, they are our normal and I have to accept that. But I also recognize that there is a part of me that doesn't WANT to accept it. I don't want this for Simon. There is still a part of me that longs for a simpler time, and I may always wonder what life would be like without the stroke.

Tuesday, June 28, 2011

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.

Monday, June 20, 2011

Father's Day

I can tell you the exact moment I fell in love with my husband. We'd been dating for a little while, we'd been friends for over a year, and I knew that I was starting to feel something more than simple attraction -- but, we'd really only known each other in one context. I knew, even then, that it isn't possible to clearly see the complete picture of a person within the twenty-something/work/happy hour/hang out environment. Besides, back then, the bars were still pretty smoky and nobody could really see anything.

That winter, we took a trip to visit his family who lived a few hours away. Having left after work, we arrived very late at night. His parents had stayed up to greet us (and meet me), but his sisters had gone to bed already. Like me, Brian is the eldest child in his family. He has a younger brother (who was in Germany at that time) and two younger sisters. I have a younger sister and brother. Like me, there is about a decade's difference between him and his youngest siblings; and we'd both spent a lot of time babysitting in our adolescent years, taking care of our little brothers and sisters while our parents worked.

After making introductions and briefly chatting with his folks, we went upstairs to go to bed ourselves. But, before we could even put down our bags Brian crept silently into his sister's bedrooms. Without turning on the light, without waking them up, he leaned over and kissed them each softly on the forehead. He watched them sleep for a brief second, and then exited the room with a look I'd never seen on his face before. His features had softened, and his shy smile completed the portrait of the man I'd been seeing, but was just now seeing for the first time.

I knew that, had his sisters been awake, they would have rebuffed this tenderness, as would my brother at the time. No teenager wants to be kissed on the forehead by a big sister or brother. But, I also knew that it was just the sort of thing I would have done. Brian was already a caretaker, just like me. He understood the selfless kind of love, the kind of love that carries you through anything and over any obstacles.

And suddenly, I knew. I knew that I'd found a man that I could marry. I knew that we would understand each other because we understood the meaning and value of family, of selfless love, of truly taking care of one another. I knew I was in love.

And, a few months later when he asked me to marry him, I knew that I was right.

I still am.

Wednesday, June 15, 2011

Post Preschool

I suddenly understand why little old ladies are compelled to own tiny little dogs, and to dote over them into their own dotage. A fluffy little dog will not grow up, will not cavalierly slide past the point at which you would like to freeze their "littleness" in time. No, instead, they will stay forever fluffy, soft and tiny. Just the right size to sit in your lap and cuddle.

I can see myself becoming one of these little old ladies one day.

Fortunately, for now, Simon is still small and sweet enough to cuddle in my lap quite frequently, but his "graduation" from preschool today highlights the fact that he is growing up. Although Simon seems like a three year old, he is not. Though I want to hold him back indefinitely, in the hopes that he will "catch up," I can't. This chapter of his childhood, and in my life as his mother, is closing, and in so many ways I don't feel that we are ready. Not ready to leave the safe harbor of pre-k-ness. Not ready to leave the teachers that have been so wonderful, and that I know love my child. Not ready to accept that, though we have made advances and done well within this special needs setting, we need to continue on within it and move forward into kindergarten.

Tonight I am both sad and grateful. Okay, mostly sad, but trying to remind myself that I should be grateful for the good experiences we had. A little (lot) tearfully I raise a glass to the teachers that have taught so well, and loved with warm and open hearts so many challenging children with challenges -- and their kind of needy parents.



Tuesday, June 14, 2011

I-E-P 1-2-3

Today we had Simon's final IEP meeting of the year. I'd tried to coordinate it earlier than the day before his last day of school, but it seemed that this once the administrative gods were not in my favor. After several phone calls and a lot of schedule-wrangling; Simon's team finally came to the table today to discuss our plan for moving from preschool to kindergarten (gasp!).

Though this was by no means our first IEP meeting, it felt somehow more important and therefore more stressful. So many changes both in Simon and in the curriculum warranted an extra level of preparation and precision. We're moving from a teacher we love, and who knows Simon very well (over 2 years), to someone new and unknown. We're going from a half day to a full day, and from the relatively flexible structure of pre-K to the far more academic Kindergarten model. We're also shifting from Simon being in a special education classroom 100% of the time, to spending some time (with the assistance of an aide) in a general education classroom in order to interact more with typically developing peers. Simon will also be eating lunch at school; and with his food allergies and tendency to choke, even this is a source of concern.

In short, this meeting was a biggie. We've been through a battery of assessments over the past few months and we discovered new diagnoses to discuss, and had many new needs and concerns to address. The IEP meeting provides the forum to discuss them and craft a plan to be carried out formally, in writing; a contract between all the members of Simon's educational team.

In our new plan, much of what I felt was needed was implemented. We've added an aide, specified individual therapy time, and created a strategy to address his food allergies and gagging. Some of what I wanted to address wasn't included in this version of the IEP -- like formally changing his diagnosis to include Autism and sensory concerns, or adding music therapy and the use of technological assists (like the ipad) into his lessons. However, everything I brought up is now on the table for further evaluation in the new school year, and the appropriate steps are already being taken to pursue these additions. Very soon there will be more meetings, evaluations and tests, and finally another new IEP to write. The entire team has agreed to come back, re-evaluate, and more specifically address all Simon's needs in the Fall after more screening has been carried out.

So, despite a fairly heavy amount of worry and trepidation, I do feel (somewhat to my own surprise) that it went well. And, since I know that this is just one of many future "biggie" meetings we'll be attending for Simon's Individualized Educational Plan (darn kids just keep getting more complicated!); and because I know that many other parents are in similar positions, I'm going to catalog a little of what I've learned that I think has contributed to our success (thus far!). Honestly, it isn't anything earth-shattering in revelation, but it may be helpful to simply spell it all out, step by step. So, here goes:

1. Be the comprehensive specialist on YOUR child. 

When it comes to all things Simon, I make sure I am well versed in all his challenges -- physical, medical, cognitive, sensory, etc. Every chance I get I make sure to ask every professional working with Simon -- academically, medically, and therapeutically -- for their opinion on his treatment and education moving forward. Sometimes they include their recommendations in their notes, but I always make sure to record it in mine.
 
Employing a giant binder, I've created the Encyclopedia of Simon, with the contact information of all our specialists, copies of all his most recent assessments, diagnosis, doctor's recommendations and therapy logs, reference information from lectures and websites, copies of his previous IEPs, and my own notes on anything I think is important. (Insurance information, and other kinds of documentation is in a separate binder, FYI.. otherwise, I'd need a forklift to carry it).


I bring this encyclopedia with me to the IEP meeting (and almost anything else related).



2. Be prepared. Tap into whatever resources you can to learn about the IEP process itself (you can often find them offered through school districts and therapy centers). I've read books, scanned websites and been to lectures (mine were offered free though KKI) about IEP preparation and about what one can and can't expect from an IEP and the school system. Just understanding what this contract can and can't do makes a huge difference.

Then, shortly before every meeting I review the previous/current IEP. I also review charts of developmental and educational milestones and, culling from what I know Simon has not yet achieved, I compile a list of what I think we need to work on further, or add. I make a point to use appropriate jargon when crafting my list (borrowing terminology from my research and from the evaluations I've amassed). I make a copy of my list for each person I know will be attending the team meeting.

This list has been one of the biggest keys to a successful meeting. It immediately gets everyone on the same page (literally), articulates my concerns and desires in a concise and thorough way, and, even if I don't get everything I want, everything that I want is addressed. I also add questions to this list to make sure I don't forget anything, or leave without a plan to get them answered.

3. Be respectful and appreciative. Even in difficult circumstances (and talking about what your child can't do and trying to figure out how to get him or her the best and most appropriate help and care when you aren't there is a pretty damn difficult pill to swallow) it does not help to lose your cool, or the perspective that the people sitting in the meeting with you are there specifically because they want to help. They, too, want what is best for your child and, if you operate on the good faith that they will do whatever they can to ensure that this is attained, you will find partners instead of adversaries. And, let's face it, we all need more help - it takes an entire village to help a child with special needs and you aren't going to get anywhere if you storm the place with torches and pitchforks.

Having said that, remember that the IEP is just the framework for the process. Be vigilant in making sure that goals are carried out and treatment is effective. It is your job to continue to advocate for your child, but (whenever possible) doing so in a way that is positive and constructive will yield the best results for everyone, including your child and your stress level. Also, be sensitive to the fact that the school has a lot of kids to work with, and sadly, a lot of those children are going to be in more challenging circumstances than yours, some of them without as much support from their own parents.

Finally, I make the effort needed to show that I appreciate the time and the expertise of the professionals I am working with. Preventing burn out of the people you depend on for the care of your child starts with how you treat them. A box of joe and some munchkins goes a long way, as does a simple "thank you."

Then.. you just wash, rinse.. and repeat.

Monday, June 13, 2011

Sharing

http://www.nytimes.com/2011/06/06/nyregion/boys-death-highlights-crisis-in-homes-for-disabled.html

About a week ago I read this article from the NY Times, linked to from a friends' Facebook Page. It starts with the story of a 13 year old boy with developmental disabilities who had been killed by a state employee whose care he was in. The employee had a history -- not only of abusing patients in his care, but a criminal background before that. The article went on to expose the systemically corrupt and abusive system in place in the NY State Department of Health's care providers for the developmentally disabled. Additionally, it described similar abuses in a variety of private homes and organizations.

Unthinkable, terrible, heart-breaking incidences were described in detail, repeatedly. The article shed a glaring light on the fact that some of the most vulnerable people in our society are being abused on an ongoing basis HERE and NOW. Horrified and outraged, I posted the article on my own Facebook page and specifically asked people to share it. I (somewhat naively) hoped it would "go viral" and make people so angry that something would be forced to change.

But, it seems I was wrong. A week has passed and I've heard no more about it. Do you know what kept the news occupied this week instead? Basketball. A congressman's indiscretion in "tweeting" some moderately salacious photos. A guy that dressed up in silly costumes to wave to his son from the school bus. To be fair, a few folks did share it, and "Spread the Word to End the Word" linked to it and got about 175 comments on it, but I can't help to think that if the article had been about the abuse of puppies it would have been on the evening news, the Today Show and CNN.

I guess that for many people, it was just too raw. Too real. A friend reminded me that dwelling on the concerns of the elderly, or the infirm reminds us of our own human frailty and it is simple human instinct to turn away from it. Though, my darker side wonders if it was human instinct that led to the abuse in the first place. Darwinism run to a rampant extreme.. and if it is some vestige of this instinct that causes not just the employees witnessing these atrocities to turn away, but the educated and powerful in our society to ignore it.

I wonder if I, myself, would have shared the article if it were not so close to the bone. If it didn't tap into my deepest fears as the mother of a developmentally disabled child -- a child so vulnerable, so unable to defend himself or even tell someone if he has been wronged or hurt. A child so sweet and dear to me that I feel I would die myself if someone were to harm him. I hope that I would have.

But for now, I am just hoping to stay hopeful. Hoping that one day, people that gleefully "retweet" semi-sex scandals will find their way to caring about what happens to a little boy that couldn't cry for help himself. That a basketball score will be less important than our score on human rights. That I can place my son in the temporary care of a state system -- like school -- and not fear that he could someday be hurt or abused or even killed because he is vulnerable, and he is different. How I wish that the world was a different place sometimes.

Wednesday, June 8, 2011

Imagine

I was tired and worn when I got home today -- a long photo shoot in 96 degree Baltimore weather had taken the wind out of my sails, so to speak (actually, there was no wind to begin with). At one point, I literally had sweat running down my back; which totally ruined the facade of calm, cool, and collected art director I generally try to go for.

However, when I came home and recapped the events of the children's day with our sitter; I was thrilled to discover another little miracle, which immediately restored my buoyancy. She told me that she'd scratched her leg, and when Simon saw the little cut he told her "Don't worry, I'll take care of you. Simon is a doctor." and he went to get his toy stethoscope to make her feel better (since that is what doctor's do).

Just like the first time Simon asked me a question, a little over a month ago (which, consequently, has become a regular occurrence -- he now asks where people are going all the time!), this seems like such a little thing from the outside, hardly worth a news bulletin (or a blog post). In fact, our sitter told me about it only because she thought it was particularly cute. And, it is cute -- but it is also indicative of a higher level of thinking.

Imagination and empathy are key to the human experience, and we are starting to see glimmers of them in Simon. I've always had glimmers of hope and optimism for Simon's ability to reach a higher level of communication -- but only glimmers, because I never wanted to get ahead of myself. I wanted to stay grounded and in the present so I could appreciate where we were. I don't want to harbor expectations that can lead to disappointments, or for that matter, to limits. But now, I find that with every instance like this, my hopes turn from vaporous glimmers -- there but not actualized -- into more solid forms. I'm both excited and nervous... but in my heart I believe that good things are headed our way, on the summer wind.

Sunday, June 5, 2011

Dream a Little Dream

A cloudless blue sky filled with optimism and possibility presided over the Opening Day celebration for the League of Dreams; a baseball team for differently-abled kids ages 5-18. Uniforms were issued, the anthem was played, and the coach addressed his players with great enthusiasm. As each batter stepped up to the plate, their name was announced over the loudspeaker and the crowd went wild.

Though there had been a similarly cloudless sky last week, when we'd attended our first practice, I'd been too busy spinning in a tempest of conflicting emotions (a typical state for me where Simon is concerned) to fully appreciate it. I'd been grateful that the team existed, and that Simon would be able to participate in such a "typical" five-year-old pastime -- T-ball! However, piggybacking my gratitude, I felt the familiar sadness accompanying the recognition that Simon isn't a typical kid, and this isn't a typical team.

Under what may have been a frighteningly cheerful facade (I may have been grimacing more than smiling), I'd been harboring the secret fear that Simon wouldn't, or couldn't, participate. That he'd resist the structure of the game and the instruction of the coaches -- essentially, I was terrified that he'd be unable to handle a team created with the sole intent of including children like him. "Then," I asked myself, "what will you do?" 

As I feared, Simon melted down multiple times. He had trouble catching, and throwing, and holding the bat. He couldn't keep a glove on his left hand. He'd run away, lost interest (and the ability to stand upright), refused to share the ball, and he'd cried for mommy. A lot. But, instead of sitting him out, giving up on him, ignoring him, or simply indulging him by letting him do his own thing, the coaches kept trying. And they were largely successful. Simon caught and threw a few times, hit a ball from a T, and ran all the way around the bases (actually, he kept running... we had to catch him).






We discovered that, because the League didn't give up on Simon, Simon didn't give up on playing. This week, only his second time on the field, he did so much better. Instead of tears, he started to say "I did it!". Instead of constantly looking for mommy, he began to look for high-fives.



League of Dreams is not a typical team, because none of the people participating are typical. The children playing have a wider array of challenges than I could begin to describe. The parents have been/are going through circumstances most moms and dads can't begin to imagine, yet they still stand, and cheer, and walk, or carry, or wheel, their kids around the bases. Though I am sure that (in addition to a love of baseball) many of the coaches have personal experience with a special needs individual, and therefore added insight into their -- our -- needs, they are also some of the most patient and positive people I have ever met; donating their free time to improve the quality of life for people the rest of society mostly tries to ignore.

So, consider this an invitation. If you feel it is rare to encounter pure joy, join us for a game. Every single time a player crossed home (and everyone hit runs), there was elation -- in the face of the player and the cheers of the crowd. If you doubt that true acceptance can ever be found, come to a game. I personally got more high-fives, hugs, kisses, and big broad smiles from complete strangers, than I could keep track of. To quote my Dad (who even joined us on the field), it was the best ball game he'd been to in over 40 years.

Myself, I found that before the end of the first inning any sadness I held from being other-than-typical vanished, and my heart finally reflected the sky. There was no room for clouds, we had ball to play.

Friday, June 3, 2011

Long time, no blog

I can't believe how long it has been since I posted here. Life got the better of me, and even my "super mom" persona wasn't enough to bail me out. Like most working momma's, I got really, really in-over-my-head busy. But, I'm not complaining, because it was all good stuff that I seek out and take on myself. Work projects, end of the semester student needs, kids. In giving over all my attention (and waking hours of which there were way too many or not enough, I'm not sure) to these great causes other stuff suffered. Like sleep. And yoga. And housework. And cooking anything that didn't come frozen from Trader Joe's. And blogging.



So, my house became a wreck, my fanny spread proliferated just in time for swimsuit season, and I've been out of touch with friends and blogs. And then, last week, things settled a bit. The semester ended, some projects finished up, and I finally cleaned, did laundry, went to the grocery store, and punished myself with a few really long hot yoga sessions to get back into form. Unfortunately, I tried to get back into the groove a little too soon. I swear my brain shut off on its own. Some sort of latent survival instinct I suspect.. Anyway, I spent a few days in blissful burn-out mode (thank goodness it was already a long weekend, since I was mentally gone anyway), sitting on the deck in the sunshine watching the kids play in the inflatable pool, and having maybe an extra glass of vino or two.

Sigh.

The mental vacation concluded and I'm functional again. (Yay!). Fortunately, the children have survived all of this, and pretty well, overall. Kids are resilient! I'm looking forward to getting my blog groove back, I did miss it.

Tomorrow is "Opening Day" for League of Dreams, the special needs baseball team we've signed Simon up to try. I'm excited for him to start this new adventure, and it seems like a good place to re-open the blog posts.

See you then!

Sunday, April 17, 2011

How Simon had a Happy Birthday

We celebrated Simon's Birthday for about four days. In my opinion, he is completely entitled to a week-long festival, but four days was more manageable since it hasn't yet been declared a federal holiday.

Simon's Aunts, Unlces, and both sets of Grandparents joined us for "SimonFest" and he was more than adequately spoiled with presents and attention. To mark the occasion, he added a new phrase to his vocabulary; "CHECK IT OUT!!!" exclaimed whenever he was given something new and cool as a gift (or when he discovered something he liked on his own, which was then promptly purchased for him -- refer to the presence of two sets of grandparents).

Simon was treated to restaurants multiple times (one of his all-time favorite things to do -- though sadly, he did not manage to get a blond waitress, those are his favorite. Especially if they have sparkly earrings and swinging ponytails. He is such a flirt, especially when there is a pretty girl bringing him food!).

We visited some of Simon's favorite places. It rained a lot, but with every break in the clouds he was outdoors, either in our own backyard playground or at our neighborhood play space. We visited the Science Center, his favorite area attraction, and I followed him around the while he spent as much time as he wanted with the "alternate instruments;" a laser harp and percussive ball maze; the water play area, and the kids' boat and submarine stations. Simon was a blur of activity and frequently used both his arms and hands to assist with tasks -- almost without thinking. It was great to see (I even emailed a photo to his therapist to brag!).





I had been a little sad that I didn't know what toys he'd specifically want for his birthday -- so I had (what I think) was a pretty brilliant idea. I simply took him to the toy store and let him show me what he liked. It ruined the element of surprise, but that didn't matter -- he loved it. We heard exclamations of CHECK IT OUT!!!! many, many times. He tried out every single toy with buttons and/or wheels. He even test drove a mini Mini Cooper (I was tempted to get this for him, but we really don't have the space). In the end, we came home with a new train set that I added to his current train table (the reconfiguration took two adults about four hours to figure out); and a pretty groovy pirate ship water play table that I put out on our deck. Simon loves them both.



Finally, we had a little family party. I gratuitously over-decorated the dining room in a pirate theme (with eye patches instead of party hats), completed by the Grandparents' absolutely enormous bunch of balloons (including an giant pirate head). We had pizza, cake, ice cream and presents.



For me, the finale was watching Simon, for the very first time, blow out his own candles. He blew them out one at a time, to wild applause. With each of the five candles, I made a wish. For health...For continued progress: physical... cognitive... For happiness. And (most of all), for Simon to always be as loved as he is right now.

Sunday, April 10, 2011

Birthday Blues

I have a confession to make -- a deep, dark, mommy-secret. Every year, a few weeks before Simon's birthday, I go through a bout of mild depression. It is a slow moving, creeping kind of sadness. For years, I'd feel badly for days, without even identifying the cause. Last year was the worst, and it was the first time I made the connection. This year, I knew it when I felt it come on, and I tried to be ready for it.

It all starts innocently enough, with cheerful thoughts about what to do to mark the birthday.

Party? Guests? Theme? Gifts? 

As I try to decide what Simon would like, I inevitably find myself wishing I could ask him. I try to tell him about his birthday. I describe party ideas. I provide options for cake and ice cream flavors. I ask him what he would like to get as a gift.

I don't get any answers.

Then, like inebriated, unwanted party crashers, the "bad" thoughts tumble gracelessly into my consciousness. As Simon turns another year older, though I try never to compare him to "typical" children (if I can help it), I find my thoughts permeated by such comparisons.

"Most five-year-old-to-be's would've had this information hashed out in detail as soon as their last birthday was over... They'd want a big party (the kind Simon can't handle...we tried once..should we try again? What a disaster...); They'd list their favorite playmates to invite.. (Simon has none). They'd choose their own cake (at least I know what Simon likes to eat), They'd have a long list of presents they were dreaming about (Simon can't think that abstractly)."

These are black thoughts. They fill me with sadness, and make me feel sorry for myself, and my son. I mourn what I have lost. I remember the day he was born, and the fear and anxiety take hold of me again.

I become angry with myself. "What kind of a mother are you?," I ask. Focus on the positive! Be grateful for what we have, and how far we have come.

Then I am both sad, and angry. I try to bottle it up and push it away. I try to ignore my depression; and so it oozes out from my pores in the forms of lethargy, irritability, and volatile mood swings for the rest of the long and rainy month.

But this year, I found I was ready for it. Though I felt the fear and sadness and anger all over again, it didn't last as long. I tried to recognize that grieving is natural and okay. I tried to acknowledge that it doesn't make me a bad mother to wish for a better life for my son.

I let myself feel it. I let myself cry. I went to bed early. I ate a little extra chocolate. I told myself that I am okay, and so is Simon.

And I felt better. I was able to focus once again on all the good stuff, and there is so much good stuff. Simon's Birthday is in a couple of days, and I am ready to celebrate all the new accomplishments; the physical and the cognitive: our new language gains (whoohooo!), the increased use of the left side (yipeeee!), I am even grateful for our new understanding of Simon's challenges. Most of all, I'm profoundly grateful that we are simply able to celebrate Simon turning another year older after our terrifyingly close call this past November.

This year, when I remember the day Simon was born, I will remember what the labor and delivery nurse said to me as she wheeled my gurney out of the operating room. She was five months pregnant herself, but she'd stayed with me past the end of her shift -- through the induction, my long labor, and the emergency cesarean. She had cried with me, when we heard Simon cry for the first time; because the NICU doctor had said he wouldn't be able to.
After everything was over, and she showed me how to deliver my own pain meds (ah, Morphine button!), she told me she had decided what to name her baby girl. I remember giving her the best smile I could, and told her that I thought she was brave to have a baby after all she witnessed as a labor and delivery nurse. She laughed (a little wryly), and said she had decided to name her baby Laura, because I was the bravest mom she'd ever met.

Every single day, and especially on Simon's birthday, I try to live up to that.

Thursday, April 7, 2011

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.

Sunday, April 3, 2011

Truancy

This morning, as I drove Olivia to Sunday school, she remarked that it had been a long time since we'd had our last "Mommy Day." I agreed with her. It has been over a month, longer than we usually go without spending dedicated special time together. She and I tried to plan when our next one would be; and, to our mutual disappointment, we discovered that it would be at least 4 weeks away.

"Oh," said Olivia in a quiet voice, "that's not good."

"No, it isn't" I agreed.

When we pulled up to the church, I found that, due to the adjacent college's open house, there was no parking to be found. I double parked with my flashers on and walked her to the door of the rectory.. which was locked. Everyone was waiting for the person with the key to show up (not an unusual circumstance).

As we waited, I noted the blue of the sky. It was so clear today, it seemed to hold endless possibilities. And yet, there I was locked out of the classroom but still locked into the usual routine, despite the downcast eyes and palpable sadness of my too big little girl.

Suddenly, I saw the signs and refused to lose another minute.

"C'mon, Livy -- let's go!"

And so we did. I grabbed her hand and together we ran back to the car, revved the engine, and streaked out into the world together.

Moments later, seated at Olivia's favorite place to have breakfast in the entire world, she was positively glowing over her hot cocoa and chocolate chip pancakes. I'm sure I was too, as I basked in the warmth of her big brown eyes, and talked with her about her favorite books, her new art class, the silly things her friends have said, and her desire to redecorate her bedroom ("I'm a big girl now, Mommy.")

I've always lived by "the rules." My "wild" youth was embarrassingly tame, and as I'm growing older and looking back, though I am proud of all I have accomplished; I sometimes regret the chances I didn't take.. simply because I wasn't "supposed to."

Olivia and I both knew what we were "supposed to" do today. But we also knew that there was something else that needed attention. I want to teach my daughter responsibility and commitment, so that one day she too can look back at her accomplishments with pride, knowing she has done "right." But I also want her to know that, despite all the supposed-to-have-dones, there is nothing more important than living in love and in the present, and to miss that would leave the deepest regret.

I don't want Olivia to only remember that her mother always did what she was supposed to do -- I want her to know that her mother loved her wildly. That responsibilities and commitments may justly run our lives, but it is love that rules them.

I promise I will take her to Sunday school as scheduled next week. But, I don't regret our truancy a bit. And, somehow, I think God understands, as only a fellow loving parent can.

Thursday, March 31, 2011

Sheepless Nights



Before I had children, when my parents told me that they lost sleep worrying about myself and my siblings, I was certain they were being overly dramatic in the endlessly creative way parents devise to scare their kids into better behavior -- If you don't finish your dinner, throngs of starving children will suffer.. If you don't properly turn off the sink, the oceans will run dry. They had a point -- world hunger and water shortages are quite real –  but they aren't exactly hinged on your single plate of rejected veggies or your lackadaisically dripping tap.

However, I can say with certainty that on the matter of lost sleep, I was wrong (yes Mom and Dad - I admit it! You were right!). I've learned that being a parent means vast amounts of lost sleep -- well past the stamina-crushing newborn days (months). Fear of dreams and the dark, benign desires for drinks and cuddles, and occasional childhood illnesses, all take their toll on your REM count; but by and far worry is the biggest contributor to the overall deficit. The night before last was one such wakefully worried night for me.

I'd been hoping that tapping into resources for new therapies related to the Autism diagnosis would feel like an immediate positive step, but I found myself stressed about cost and stymied by waiting lists. I'd been hoping that observing the Special Ed Kindergarten (ECLS) Program at Simon's current school would ease my concerns about his education next year. Instead, I left feeling unsure and full of questions. I'm trying to have faith that everything will be resolved both well and positively for Simon's education and therapy plans in due course, but, nonetheless, I'm filled to the brim with anxiety over it (in addition to my usual worry about his more general well-being).

For hours, I tried to think about other things. I tried to breathe deeply, to make my mind blank, to chant spiritual mantras. I drank an entire pot of sleep-inducing tea, and read an equally soporific book. I tried to count sheep, but I found that they had been eaten one by one by the ravenous pack of wolves comprising my unbridled anxiety at 2... 3... 4 o'clock in the morning.

Last night started the same way. At 3 am, when Simon crept into my bedroom wide awake, I wasn't asleep either. I thought about putting him back to bed (a cardinal rule in our house is that everyone sleeps in their own beds) but the truth was, I wanted to cuddle with him. Lately, whenever I am overwhelmed by Simon's myriad "issues," I've found that the best tamper for my ratcheting anxiety level is simply spending time with Simon. Letting him be, and allowing myself to bask in his sweet Simon-ness makes everything feel like it will be alright, no matter what challenges we face. At that one moment, we are just fine.

I can't say I got any sleep -- a squirmy wide-awake preschooler isn't exactly a restful bedtime companion -- but I had peace. My sheep may have been eaten, but my little lamb is safe in my arms and all is well with the world.

Tuesday, March 29, 2011

Full Time Job(s)

I feel a whole lot less invincible today.

My day went something like this: answer work emails for an hour, then place a phone call with the state about the Autism waiver waitlist (they are sending me paperwork to complete). Send a job to a client for review, then place another call to a private service offering social skills therapy (they are also sending me paperwork). Conference call with a client, then head to Simon's school to check out the Kindergarten Special Education Classroom. Visit in Simon's current classroom to see how he is doing and chat with the teacher. Meeting with the IEP coordinator at Simon's school to discuss options and diagnoses. Bring Simon home with me. Scarf half sandwich (had not eaten yet). Change clothes to more professional attire (no time for shower, thank goodness for ponytails) for class. Swill coffee. Eat a couple donut holes. Teach for four hours. Crash.

I'm on the crashing side of things right now. I didn't get nearly enough work done, but I'm too tired to be able to complete any meaningful task (therefore I apologize if this post is awful and whiny). I feel like my class was taught with less enthusiasm than I usually bring to it, but I'm feeling emotionally depleted after an anxious day of trying to plan for Kindergarten for Simon (and being unsure about the appropriateness of what is currently offered). Honestly, there is so much anxiety around the topic of kindergarten and new therapies for Simon I feel like my head might explode on a good day -- and today wasn't exactly a good day.

But all is not lost. Simon's current teacher and the IEP coordinator are great, and they are going to help me look for options. The representative from the private therapy seemed to think their services could help us without having us get a second mortgage on the house. My class did well today, even if I don't think I did, and and I'm grateful to have more business coming across my desk any day.

And, tomorrow is another day. I've set out my clothes and bag for yoga. I've got an early morning meeting planned, after which I will make a combo trip to the pharmacy and grocery stores (for quick to defrost meal options!), come home and pound out some work until late night when I can no longer see straight.  I can do this, I know it. I can find my way back to invincible, I just need to find my cape first (and maybe take a shower).

Saturday, March 26, 2011

Trying

We just returned home from four and a half hours of speech-language evaluations at Kennedy Krieger. We were referred for testing last month by our Neuropsychiatrist, at which point we were put on a waiting list for evaluation. A six month waiting list. Somehow, I managed to throw just the right sort of fit -- both polite and understanding, but sufficiently firm and urgent -- to get our eval moved ahead five months,  and off of the wait list (being completely flexible about our time, helped too).

Today, Simon was given the Preschool Language Assessment (PLAI) and the Autism Diagnostic Observation Schedule (ADOS). I also had the distinct impression that Brian and I were being evaluated (I was right), our every interaction with Simon -- from basic care, to mitigating meltdowns -- was noted.

To say that it was a loooong afternoon, which tried the patience of all participating, would hardly be sufficient. Frequent breaks, bribery and tears punctuated short stretches of successful testing. The highlight of the afternoon was a vending machine run.

The results aren't a surprise, Simon is still "three standard deviations" below average for speech/language and communication skills. His performance is ranked in the 2.5 - 2.8 yrs. range. He tested positive (again) for Autism, as well; PDD-NOS. His communication and social skills are considered seriously impaired; therefore, we are being referred to more services -- for which, of course, there is a significant waiting list.

I'm tired of being put on waiting lists to get help for Simon. This litany of hurry-up and wait is a maddening protocol. It is beyond frustrating (I think I've arrived at just plain pissed) to identify a problem, request help from your overseeing physician, then be referred to a specialist whom you have to wait months to see, to get confirmation of the problem and then get referred for an evaluation that takes months to occur, to then acquire a positive diagnosis and then -- finally -- be referred to therapeutic services that you have to be put on a waiting list to obtain! Years can go (have gone) by just WAITING for help, well after the time you know you need it. And, of course, all during the critical "early intervention" years. Alas, as far as I can tell, there are currently no alternatives to this dysfunctional "system." Dishearteningly, I imagine this is because of the amount of children needing help, and the lack of adequate resources. In the meantime, I have requested to be given very detailed, explicit recommendations on what we can do to implement therapeutic communication strategies both at home and at school, and the lovely specialist we saw today agreed.

On the upside, Brian and I tested well. Amidst my mini-meltdown (expressing my frustration with waiting lists, see above), the therapist stopped me (fortunately before I got to the tears part). She said that Simon has been getting lots of help, and that it was clear that the reason he is doing as well as he is is because of the intervention he has received thus far. She also said (and I think I will take this compliment and carry it around with me as one of the best I've gotten) that Brian and I were some of the best parents she has seen when it came to working with Simon to improve his communication skills on a day-to-day-minute-to-minute basis. She cited examples of our giving him appropriate language cues, waiting for his processing, and finding unique was to motivate him -- things we don't even realize we are doing. As a parent, you just do it.

I'm trying to let this -- the understanding that maybe, just maybe -- we are doing well by our son, whose needs are sometimes so intense, and whose care I sometimes feel inadequate to perform, over-ride my frustration and even anger at what feels like an insurmountable delay at addressing such serious diagnosis. I'm trying to let it give me hope that we've done well, and will continue to do better. To believe that Simon will get everything he needs to become a successful, functional adult, and that I have done all that can be done to facilitate it.

I'm trying.