Archive for the ‘Sensory Processing Disorder’ Category

Winterfest 2015

January 11, 2016

Here it is: the end of the year, the beginning of reflection time following the roller coaster that began in September and has finally come to a short rest in the quiet remaining days of the year.

It’s a melancholy time. Christmas is over- the hubbub, hoopla, hysteria. Alvin the Elf and his nightly maneuvers into creative spots new spots that have not been previously thought of. The making a list and checking it twice and not saving it to the smartphone memo pad and having to try to remember everything that was written all over again. The Oh Shit presents and the anxiety of knowing that at any moment they may need to be used and may or may not be good enough. The reminder to not let the stress of the season get in the way of enjoying the magic that comes with young children and Christmas….which is easier said than done.

And I may or may not have succeeded in that.

There were many moments of magic. And I did try to breathe them in and savor them for the short time they may last.

One highlight of this season was Winterfest at our favorite state park.

It was local. It looked cute. Our expectations were not high, but we have a 3 and 6 year old who are still fairly easy to please, and it was $5 per person. So we decided to check it out.

We met two other families at the local state park at sunset (which, this time of year, is before 5pm). There was already a line, but it wasn’t too long. While we waited for the other families, Bubba was drawn to a large television perched on the grass next to the line. It was Elmo and Ernie and the friends from Sesame Street in sweet shorts celebrating the season. The magic in this was Bubba’s delight in these characters. This little boy, who is every bit BOY, spends his days dreaming that he is Darth Vader and whipping an invisible light saber around. His favorite show to watch is Star Wars Rebels. He talks about the Dark Side and seems to aspire to be a member of it. And I reflect on his brother and his interests at the same age- Wonderpets, Backyardagains…and while he did like the concept of Spiderman and other superheroes, we really didn’t venture out of the realm of preschool programming when it came to tv.

Well, it’s easy to limit exposure when your preschooler is the oldest child in the home. However, with Rocketman being 3 years older, Bubba has easily acquired the same interests as his older brother…and then some. (Rocketman prefers Jedi rebels and Droids to anything Dark always.)

So, when Bubba was drawn to Elmo and his friends on the big screen at Winterfest, I was delighted. Delighted to see that my “baby” still retains some of his sweet innocence. That underneath the lightsaber swinging, Darth Vader mask wearing exterior, he is still just a little boy who enjoys learning his ABCs and singing “Twinkle, Twinkle Little Star.” And that little bit of Magic was a nice way to kick off our first experience at Winterfest.

The experience just got better from there. From the lit path of Christmas lights to the inflatable snow globes to the Minions and Superheroes wandering around the park, the parents were impressed and kids enamored.


We eventually made it to the “Lost City,” a trail that had been created for the local haunted house experience in October. Now it had been transformed for the Christmas season, going from a narrow walkway opening into rooms full of blood and gore to one covered in festive lights and leading into rooms full of popular holiday characters like The Grinch, Rudolph and Frosty.

Rocketman was apprehensive at first. The lights, the anticipation of large characters, the memory of the haunted rooms that filled its space previously- it all provided a bit of sensory overload. But, brave boy that he is, he pressed on, mostly concerned about that mean spirited Grinch that he’d been promised to encounter. I reminded him that, in the end, the Grinch’s heart had grown 3 sizes and was now a “good guy.” The encouragement allowed him to press ahead, but he was still doubtful.

We entered the room of the Grinch (who looked more like a bunny rabbit made out of broccoli), who was accompanied by Cindy-Lou Who and Rudolph and while all the other children ran around the room greeting the characters, Rocketman hung back. With a little persuading, he finally inched forward and into the arms of the not-so-scary Grinch. And I was as proud of him as I always am when he is willing to overcome his fear in favor of experience.


As we walked through the path to the lost city, Bubba saw a picture of Frosty on the wall and began shouting, “Look, Mommy Look! It Fosty! We get to see Fosty next! He my favorite! I love Fosty!” And there was that unabashed preschool enthusiasm again. We entered the room with Frosty and Bubba stopped in his tracks. The rest of the kids ran to the snowman, stopped for a quick photo, and then ran off to the next thing, but Bubba just stood and stared at his favorite- “Fosty.”


And this is what I love. The magic. Give them some Christmas lights, inflatables and local teenagers dressed as their favorite characters and their eyes light up and their imaginations come to life. And I know it won’t be this way forever. And I worry each year as they grow older that this will be the year that the magic begins to fade. And this is why I need to write. Need to record. Need to reflect on this fresh memory of Bubba staring in awe at super-skinny Frosty. At Rocketman’s proud smile as he embraces his fear and snuggles with the Grinch. At the fact that we are having and enjoying this time as a family and that everyone of us wants to be there, with each other, at that moment. It won’t always be this way. But I’m happy that it is now.

Once we made it through each room, we came to an area of the path that was full of dancing Christmas lights. We had purchased glasses for the boys that somehow made each light appear to have a reindeer surrounding it. While the other families ran ahead to see what was next, my family hung back. We watched the “light show” without the glasses and oohed and ahhed as they danced. We took turns wearing the glasses and laughing as the reindeer prisms frolicked when we shook our heads back and forth. And hubs and I looked at each other and smiled at the fact that this $20/family local show was providing just as much fun for our boys as any hundreds of dollars extravaganza we have brought them to. And we basked in their enjoyment.

I hope that we can always stop and look. That we can always bask in the moment, no matter how simple. No matter how seemingly insignificant. I am melancholy because my babies are growing and I am anxious about the time that will come when they no longer want to share family experiences with us and will scoff at characters and their crude costumes and obvious masks. And the magic will be gone. But then I think about the fact that I am 38 years old and I can still see the magic. And hubs is 43 and stills sees the magic too. And I hope that between nature and nurture my two boys will maintain at least some of their enjoyment and enthusiasm for this season through their tween and teen years. But, in the meantime, I am stopping and looking and enjoying these little things- Rocketman reaching for my hand when he is apprehensive about an overstimulating situation and being calmed after holding it, Bubba’s whole body responding to a picture of his favorite character- back arched, fists splayed to the side, and hums of excitement emitting from his smiling face, and the moments that my whole family stands alone in the busy hubub of the season and enjoys all the sights, sounds and magic it has to offer.


Two Momentous Years

November 15, 2015

Two years. In adult terms, two years is nothing. And then you have children. And, though they fly by, two years and the development that occurs within them are momentous. These past two years have been momentous.

Where were we two years ago this November? I had a one and four year old. I was working half time- my dream job, striking a balance between the role of mother that I adored playing and the role of teacher of young children. The mother role allowed me to spend time with my thriving, spirited boys, arranging playdates, spending extra time cuddling, making messes in the kitchen cooking pancakes together in the late morning, and cooking, cleaning and running errands during the day in order to keep the home running efficiently and effectively. The teacher role allowed me to have my own space to create and cultivate my craft,  helping students grow as readers and writers, and interacting with peers and colleagues, brainstorming how we could improve and reach students even better.  Two and a half days of each, plus the weekend with my family. What could be better? What could be more perfect?

But I was concerned. Concerned about Rocketman’s (then 4) development. His sensory issues. Fine motor. Gross motor. Speech. And, while my concerns had been mounting for two previous years, the medical community in which he was involved finally took my them seriously and sent him for evaluation.

This time two years ago, Rocketman’s OT evaluations came in. And they were not pretty. Sensory seeking behaviors combined with sensory avoidance. Weak core resulting in developmentally delayed gross motor skills. Weak left side of body. Delayed fine motor skills. He could not draw a picture beyond a circle. He could not copy shapes. He could not stand on his left foot from kneeling without falling down. He could not run down a soccer field and keep up with his peers. But the most alarming thing of all was that he could not function in his Pre-K classroom because he was so overstimulated. And he would completely shut down. And I was supposed to send him to kindergarten in a year. And he wouldn’t be ready for the developmentally inappropriate content that kindergarten currently offers. And that’s when my third role began: the role of parental advocate for my child who officially had special needs.

My previously designated playdate Mondays were now designated for speech therapy in the middle of the morning. Right at the point that the one year old toddler would be ready for a nap and grow manic, running through the hallways of the school while the school staff looked on disapprovingly and I wrangled him apologetically for the thirty minutes that Rocketman received therapy.

Tuesdays I took Rocketman to pre-k, checking in with his amazingly gifted teacher to see what kind of progress he was making coping in the classroom and learning that the progress was slow. Then I would run errands with Bubba or take him to music class and really get to enjoy my “Mommy” role…until 12:30, at which point I would again put on my parental advocate hat and pick up Rocketman from Pre-K. Bubba would go down for a nap and at-home therapy for Rocketman would begin. His home sensory diet. Fine motor manipulating beans, heavy work, usually a “project” consisting of sensory friendly materials. Then a balancing course. Mommy and Rocketman yoga. Heavy pressure. Brushing protocol. Brushing protocol. Brushing protocol. And then Bubba would wake up. And I would attempt to make dinner while he tore my house apart. And then Rocketman would eat dinner, getting every bit of food all over his face and drool. And I would be ready to go to work the following day.

Wednesdays and Thursdays were my days. Where I would work with kids and colleagues and focus my creative juices on working to become a better teacher every day.

Fridays I worked until 12 and then picked up Rocketman while Bubba napped at his one day of daycare and I brought Rocketman to one on one OT therapy.

Saturdays and Sundays I spent time with family and prayed all of our work with Rocketman would adequately prepare him for kindergarten. But knew he wasn’t ready.

And so the battle began to get Rocketman on an IEP for his sensory, fine motor and gross motor issues and to allow him another year in pre-k to be able to receive therapy in a developmentally appropriate setting. And, what a battle it was.

Our victory began another year of therapies, evaluations, sensory diets and brushing. But this time the progress wasn’t so slow. Instead, Rocketman was growing leaps and bounds. And this time, when kindergarten registration came around, we knew he was ready.

So here we are. A new year. A new school. A new and improved kid. And a new IEP meeting to discuss what should and should not be included in his new IEP.

The teachers think he’s fabulous. He’s so smart. So verbal. So funny. And he is for sure! And I’m so glad that they see and appreciate that. But I warn them. He had trouble focusing. He couldn’t function in a classroom. He ran out of theaters. He. Melted. Down. But, they don’t see it in school. They would never have guessed had I not shared that.

At our first IEP meeting at Rocketman’s new school, I heard it all. All the positives. He is thoughtful. Kind. Funny. And what a memory! And what great progress! And just sign here if you agree to the IEP.

And as I read through, I was surprised to see the piece that was missing. The sensory piece. The OT. The therapy. Not there.

“We just don’t see a need for it. If you had not shared his history, we would not have had any clue that that was ever an issue. And if it was, it is certainly not anymore. And if it becomes one then we reconvene the team and add it back in. But for now you should be celebrating. Because he has come this far that it is unnoticeable in the classroom.”

And I wanted to put on the breaks and yell that, “No! You are not seeing it because you choose to not see it! The issues are there! He still sucks his fingers! He puts fluff up his nose! He takes hours and hours to go to sleep and cannot stay asleep for more than 4 hours! He has Special Needs! You need to meet his needs!”

But here is the truth: At the end of his second year of pre-k, his teacher said the same thing. And his occupational therapist. And the speech therapist. And when I had him evaluated at the end of the year last year by an outside occupational therapist, he was assessed as not needing services. And so, really, this was the third time I’d heard this in the past 6 months. My child was no longer considered one with special needs.

And, of course, it was my mother who came to talk me down. “So three groups of people agree. His issues are not hindering his success in the classroom. And that is because: you have already done all the work. All the fighting and early intervention and sensory diets and extra time paid off. And now you are seeing the rewards of your hard work.”

So, then, why can’t I celebrate? Is it because I have lost a part of myself in Rocketman’s success? The parent advocate part? If so, I should simply step off my soapbox and walk away quietly and celebrate in triumph. But, I’m not quite there yet.

Being a parent of a child with special needs is something that one could never understand unless they were to go through it themselves. And, though I’ve considered myself to fit that role for at least the past two years, really I’ve sat on the periphery. My child did not have severe special needs. His services were limited. He was able to do most things his developmentally typical peers could do. He was just not so great at soccer. Or writing. And he’d run out of crowded places screaming. Otherwise, one would never know.

But, I still identified him as a child with special needs. And I still identified myself as a parent of a child with special needs. And I still worried incessantly about his development. And how these needs would affect him as he grew older. Socially. Academically. Emotionally.

And then all of a sudden after two years it’s like: poof! Oh, he’s all set. Totally typical. Issues? Nope. We see none! Time to celebrate!

So I will. In time. With caution. Because, while I really am overjoyed that this child, who took two years to prepare for this moment of entering kindergarten, really is doing so well in this new setting, I can’t look at him without seeing the child that curled into a fetal position and screamed in pain the first time we tried to take him into a small movie theater at 3. The child that fell out of of his chair every single night at dinnertime for the entire year he was 4. The child that needed deep pressure and joint compressions every night in order to go to sleep at 5. The child that sat under a table and wept in his classroom because he was so overwhelmed with the environment and could process so little of it.

He has come so far in two years. I know. But, just as it took time to process that my child had special needs, it may take some time to process that he doesn’t anymore. And when that happens, I will celebrate and rejoice over our grand successes. But for now I will reflect on how much change these past two years have brought and take comfort in my most cherished role of all: mother of a smart, funny, kind and, yeah, super quirky kid that has momentously transformed in the past two years.

Sink Like a Rock, Float Like a Bubble

April 10, 2015

Rocketman has always loved the water. He was born into a family of water-lovers. For one, we live in Rhode Island, a state that despite not being fully surrounded by water, has “island” as part of its name. While dating, Rocketman’s dad and I fell more in love the day that we discovered that we both would rather inspect sea creatures in a cove under a bridge than go out to a fancy dinner. A year before he was born, hubs and I fulfilled a life-long dream by completing a NAUI scuba diving course and earning lifetime scuba certifications. Rocketman was destined to love water.

I signed Rocketman up for swimming lessons when he was 8 months old. While other babies whimpered, cried and expressed fear and distress their first time in the pool, Rocketman had but a moment of concern and confusion before he began splashing, laughing and flipping around in my arms.

From that time forward, as soon as spring came around I would sign Rocketman up for swim again. We continued with Mommy  (or Daddy) and Me classes straight up until I was nine months pregnant with Bubba and stretching out my plus-sized bathing suit so I could catch Rocketman as he slid off a small slide into the pool and jumped off the block into my arms.

Swim ended and baby bootcamp began and chaos ensued. And when Rocketman was three, a magnificent, state of the art YMCA was built the next town over. And we had to check it out.

It was spring, time for swimming lessons. With Bubba in the Ergo on my chest, I strolled into the new Y with Rocketman’s small hand in mine. It was, indeed, state of the art. Modern art hung over our heads from the high ceiling, the adult gym whirred with brand new workout machines, and small cafe tables with brightly colored chairs littered the lobby. But the thing that tore Rocketman’s hand from my grip was the full glass wall that overlooked the swimming pool.

The swimming pool was large, much larger than the one we had used at our previous Y. But the feature attraction was not the pool itself. Bordering the pool, there was a kiddie area featuring a small splash pad. Water poured out of holes in the floor in an arc and sprayed out of a firehydrant and tall happy flower. Waterfalls dripped out of tall poles bent at 90 degree angles above the family swim area of the pool. Children screeched as a bucket that had been slowly filling with water suddenly leaned heavily over, spilling its contents on their heads 10 feet below. Rocketman stood, fixated, with his small hands and the tip of his nose pressing marks on the glass. And then he pointed at the bright red twisty turvy giant water slide in the deep end of the pool.

“Mom! I wanna go there!! I wanna do that!! Can we do that Mom? Now??”

But we couldn’t. Because in order to be allowed access to the giant water slide, one had to swim the width of the family pool and back. And Rocketman was only three. And could not swim.

But he thought he could! On our first day of swimming lessons at the new Y, Rocketman begged the instructor to let him go down the slide. She explained the swim test to him and asked if he would like to try it. I held my tongue and my breath as he splashed into the water with her by his side and sunk like a rock. She retrieved him from the water’s depths unfazed and encouraged him to swim the width of the pool. He did so…with the aid of her hand supporting his belly and propelling him forward. “Did I do it, did I do it??” And his face fell when she told him, no not yet.

With gentle encouragement, I explained that the reason we were taking swimming lessons was so that he could learn to do just that. And with practice and hard work, he would be passing the swim test and tearing down that slide in no time. I predicted six months, which would bring him to four. I was hopeful and he was determined.

And then he was diagnosed with sensory processing issues, low muscle tone and fine and gross motor difficulties. And swimming lessons became a nightmare.

This new pool was so big and beautiful that it drew children of all ages for all types of lessons. During one swim session, there could be at least six lessons going on in different areas of the pool, as well as family swim activities involving the splash pad and waterslide. Screeches of glee mingled with cannonball splashes and instructors’ voices straining to rise above the din. Coupled with the cool wet water covering his sensitive skin, Rocketman went into sensory overload.

Many children with SPD (Sensory Processing Disorder) will react to overstimulation with either a fight or flight response. Those who have a “fighting” response tend to be seen as behavior problems, bouncing off the walls, yelling, screaming, crying, banging…painfully frustrated about what the bombardment of sights, sounds and touch are doing to their bodies. Rocketman’s typical response was “flight.” Running out of a crowded theater, digging his fingernails into the doorframe to avoid being carried out of the house when there was a fire engine (and therefore potentially loud noise) across the street, or retreating inside himself to a safe place in his mind and looking off unblinking. The later is the way in which he went through his first few swimming lessons at the new Y.

While other kids were splashing, laughing, actively engaged, Rocketman was out in space. The teacher would yell, “When we float, what do we look like?” All the kids would yell, “STARFISH,” and splay their limbs out to the sides. Rocketman’s limbs would remain slack, his eyes floating to the left, unfocused on anything going on in front of him. He would be pulled through the lessons with an instructor at his side, appearing to be barely aware of where he was and why he was there. And I would sit on the bleachers with Bubba in my lap willing him to come back from wherever he was so he could learn and enjoy the experience with his peers.

I did some research. (aka Google searching) Some said that the more SPD kids were exposed to certain stimuli, the more their brains could process the stimuli. And so, painful as it was to watch, I did not give up swimming lessons, and Rocketman did not give up his waterslide dream.

As the sessions progressed, Rocketman seemed to become more aware. Now four and a half, he was gaining confidence and convinced he could swim, though I knew he could not. When it was his turn during lessons, he would hit the water and begin to flap his arms. His mouth would open and his tongue would come out and indescribable noises would emit from his body. Almost like he was blowing an invisible horn with his tongue out. Still clearly overstimulated. But at least he was responding physically in some way…?

And still we continued. Right through the the “turn around phase.” This time, while all other children were focused on the instructors and instructions, Rocketman would turn around, look at me, smile, stick his jaw out and grunt in a sing-songy way. I would spend the lesson mouthing, “Turn around,” and turing my index finger through the air while Bubba laughed and tried to jump out of my arms and join his brother in the bizarro fun.

One day, while Bubba was participating in Waterbabies in another area of the pool with Daddy, I watched as the three instructors took the three other kids in the group and swam toward the center of the pool. Rocketman was left sitting on the side of the pool unattended. I immediately felt uneasy.

Once again, Rocketman turned and looked at me, jaw jutting out, staccato grunts pushing out from his belly. I nervously held up my hand and mouthed, “Stay right there.” Then a wide smile spread across his face and he threw himself off the side of the pool and into the deep water. And, again, sunk like a rock.

I don’t remember flying off the equipment locker I was sitting on. I found myself kneeling at the side of the pool, stretching as far as my body would reach and plunging my hand under the water to grab a small flailing arm. It was as I was pulling a sputtering Rocketman out of the water that the life guard and all 18 swim instructors from the pool closed in on us. That was the day that Rocketman was finally convinced that he couldn’t yet swim, but the sick feeling that I had as I watched him sink has never quite gone away.

Rocketman was full swing into Occupational Therapy at that point. All experts agreed: swimming was great for him! It could aid in self regulation! It taught him where his body was  in space! It engaged all of his muscles that were low in tone and needed to be strengthened. And so we endured the torture until May of his year of four. And then we took the summer off to…swim. In the ocean, at the lake, and in our best friends’ new pool.

And Rocketman turned five. Therapy continued twice a week, but other than that, the summer was laid back, and full of pure childhood outdoor fun. And Rocketman thrived.

Everything seemed to “click.” Self-care, following steps in directions, and self regulation, things that he had struggled with daily for years, suddenly became non issues. He grew, he matured and he suddenly became the best version of himself.

And in November we started swimming lessons again. Bubba had broken all kinds of Waterbaby barriers and had been bumped up at two to the 3-6 year old class. And so Rocketman and Bubba took lessons side by side. And for Rocketman, there was no flailing, grunting, or throwing himself into the water. When the instructor would say, “What do we look like when we float?” Rocketman’s would me the loudest response of “A STARFISH!” He would smile and wave at his brother and us, but mostly his focus was the instructors, and following their instructions. When the session ended, Rocketman’s favorite instructor handed me his progress report. Every skill had been checked off as completed. But the recommendation was to remain in this level for one more session. “I know he could technically move up, but that class is 45 minutes instead of 30 and I think he just needs one more round of this class to increase his endurance. In the next class, they will mostly be swimming unaided.”

In school that month, the Pre-K kids were asked to write about a goal that they had. Rocketman wrote about the waterslide.

It was January. A year since Rocketman had flung himself into the water and sunk like a rock. Bubba was now in the same class as his brother. This did not phase Rocketman. He was glad to have the company.

When class ended in February, the instructor smiled as she handed me the report saying that Rocketman could advance to the next level- the highest of the preschool classes- and said she was confident that he was ready.

On a Thursday evening in March, I rushed from work to pick up Rocketman and then Bubba, sped to the YMCA, stripped their clothes off, threw their swim trunks on and rushed to join the first class of the new session.

But there was nobody there. I huffed and puffed up to a lifeguard as I surveyed the empty pool. “This is a biweek. Classes start next week.”

But we were there. And the kids were in suits. Hubs was on his way and we both had our suits. I called Hubs and we agreed to stay for family swim. The kids were ecstatic.

First they splashed in the splash pad. Then Rocketman asked if he could swim in the family pooI where the rule was that only those without floatation devices could enter without a parent. I encouraged him to ask the life guard, who agreed that it was fine.

I watched in awe as he independently swam around the low end of the pool. Then, his pupils got big and he rushed out of the pool and at me and asked, “Can I go on the WATERSLIDE?” I told him that he would have to speak to the lifeguard and probably pass the swim test first. He asked me what he needed to do for the swim test and then ran back into the pool. Without faltering, he swam from one side of the family pool to the other. When he got there he turned to me, smiled, and gave me a big thumbs up, which I returned enthusiastically. I gestured that he now needed to swim back. Without hesitation, he plunged ahead. This time, though, the current from the waterslide was rushing against him. It was slow going and nothing showed above the water but his face which was creeping along the surface tenuously.

I didn’t realize I was holding my breath until he made it back to the side. He was shaking as he scrambled up the side of the pool and rushed over to me. Pride and excitement spilled over as he asked if he could do it. Could he go down the waterslide? And then I had to break it to him that the lifeguard had no idea that he had just completed the swim test and would probably have to complete it again.

And there was no hesitation. He marched over to the lifeguard, asked if he could try the swim test, and repeated the laps, poking along against the current of the waterslide and scrambling up the side of the pool again. This time, his pride and excitement was directed at the lifeguard who looked down at him nonchalantly and muttered, “Ok.”

Rocketman didn’t understand.

“Did I pass the swim test?”

“Yes. You can go.”

“I can go? Go on the slide?”

“Go ahead.”

And then he had to clarify with me. Because he was so sure that he was misunderstanding the lifeguard’s message. But I confirmed it. He passed the swim test. He could go down the waterslide.

Hubs arrived in time to see Rocketman taking the steps two at a time, giggling and shaking with joy. He reached the top and when the lifeguard gave him the thumbs up, tumbled down the slide screeching with jubilance. And when he spilled off and  plunged into the water, he did not sink like a rock. He popped right back up above the surface and swam to the ladder, climbed out and said, “Can I go again?!”

And again he went. And again, and again. I explained to the bemused lifeguard that this had been his dream. A goal established two long years ago as a blonde curly haired three year old with his little nose pressed against the glass high above this very swimming pool. It wasn’t easy. It wasn’t fun. It was painstaking and frustrating and tedious. And so many times we wanted to give up. But we didn’t. We went to all the therapy and and enforced sensory diets at home and fought for IEPs. And spent every Saturday at the YMCA cringing.

But it was all worth it on that day. The day Rocketman came flying down the waterslide screeching with glee. And the pleasure I got out of watching this child do that was greater than the pleasure I have ever gotten watching my naturally capable child complete swim classes designed for children twice his age. I’m proud of him too. But there is something about seeing your child do something that was never going to be easy for him and succeeding only due to sheer effort and determination.

I brought both kids to swim class today, three months before Rocketman’s sixth birthday. I watched as he completed the crawl stroke without any floatation device, dove into the pool from a kneeling position and jumped off the block in the deep end and swam to the ladder. Any of the other parents watching him would see him as just any other five year old in the class. He looked no different from anyone else. But I looked and saw a child that has overcome the odds against him in a considerably short period of time, driven as a preschooler to do anything to achieve his goal. And teaming with pride, I can’t wipe this smile from my face.

Score one for Rocketman

October 21, 2014

I like sports. Growing up, I played soccer, softball and basketball in the city rec leagues. I liked soccer. I loved softball. I hated basketball. But I played them and was pretty good. At least at softball.

I played tennis in high school and lots of pickup beach volleyball on the school’s courts in the summer. And I threw javelin.

I was not a star at any of these sports. I was fairly mediocre. But, I never felt the need to be the best at any of them. I worked hard. I practiced. I loved being outdoors and chanting from the dugout. (2, 4, 6, 8…who do we appreciate..???)

My parents went to all of my games. My dad attended all of my practices. They were proud of me for getting out there and playing. And when I didn’t make varsity in high school, we all felt like it would have been kind of a long shot anyway and I shrugged my shoulders and joined the band instead.

Now, I know it’s not the 80’s. And I live in a different town than the one I grew up in. But, my goodness, the intensity of these parents about their five year old athlete is almost too much to bear.

Who made the travel team? Who was signed for the year round skills program? What college will offer whose five year old a scholarship? Zow. So intense.

It’s almost like it’s a blessing that Rocketman isn’t a natural born athlete. That he doesn’t join us for Sunday afternoon Patriots watching (even while his two year old brother shouts, “Touchdown” as they rack up the points.). That I would rather be going on a family hike or visiting a playground with my kids while everyone else in town is driving an hour away for a tournament.

But the best thing is that because of Rocketman’s limitations, I have a completely different perspective than those parents arguing that their child should be on the elite team. My dreams for Rocketman are just so…different.

One year ago, Rocketman was evaluated by an occupational therapist based on my concerns about his sensitivities toward sound and touch. I was present for the evaluation, and I will never forget the sick feeling in my gut that began in the first 10 minutes and lasted the entire year.

The evaluation revealed that my sweet Rocketman had deficits in fine motor skills, gross motor skills, tone and endurance. He couldn’t close his eyes and spin in a circle without flying across the room and falling down. He couldn’t stand from kneeling. He couldn’t run without hinging his entire body in one direction while sticking out his tongue in the other.

Rec soccer was a nightmare. He did ok with the skills component. But when it came to participating in the games, oh my. He couldn’t keep up with the kids, so he was more often found laying on the grass picking flowers, looking at the clouds, or sitting on a spare ball and beating it like a drum.

We wanted him to get in there. Get the idea of what it was like to play a real soccer game with everyone else. At the start of each session, we would tell him, “You don’t have to get a goal! You don’t even have to get the ball and dribble. Just TOUCH the ball with your foot….just ONCE! That’s all you’ve got to do.”

So he would run into the cluster of kids, aim for the ball, and then someone would get to it first and kick it away. All the other kids would change direction and continue after it. Not Rocketman. He would hang his head like Charlie Brown, trudge over to us on the sidelines, throw his arms in the air, and go back to drumming a spare ball.

It was all too much for him. The overstimulation of 50 town teams playing all over the giant field. 10 different coaches yelling instructions. The requirement for running, endurance, stamina. The coordination. He just didn’t have it. The kid was smart and funny and fun and thoughtful and had a million strengths. But we threw him on a soccer field where every skill needed was a documented weakness and what we got was a train wreck.

Last year was tough. But one of the high points was when soccer ended. He was put on an IEP. He was prescribed a sensory diet. Individual sports like swim were recommended and taken. Therapies were attended.

In the spring, there was an opportunity for parent and me t-ball at the local YMCA. It was a fabulous program that used scaffolding to teach baseball skills and culminated in a mock game at the end of class each week. Some weeks were good. Some not so hot. And some terrible. It all depended on his level of focus, how tired he was, what distractions there were around. One deficit was motor planning, so while all the other parents simply told their child what to do and then watched them do it, I needed to physically manipulate Rocketman’s body in order for his brain to process the connection.

It wasn’t fun. But I felt like it was almost like another form of therapy for him. And I did see progress.

This summer, we just chilled. Beach, waterslide, playdates. Bike rides, scootering, hikes. Therapy two times a week. But outside of that, I didn’t go out of my way to make every activity done at or outside of home some form of therapy. I just let him be a kid and I enjoyed watching that kid grow, learn and mature.

And then school started again. And soccer season with it.

I made the executive decision NOT to sign him up for the rec league. (Even though he was probably the only child in the town who wasn’t.) But I didn’t want to drop soccer entirely either. So I signed him up for another parent and me program at the Y.

This time Hubs worked with Rocketman on soccer skills while I took Bubba to tumbling. Again, it was a scaffolded skills class that would sometimes culminate in a scrimmage at the end of class. Sometimes I would catch a glimpse of them playing from the window at Tumbling. They looked pretty good, but who knew.

Hubs was positive about their sessions and enthusiastic about working with him in the backyard. After dealing with him in a similar situation in the spring, I was surprised but impressed with his enthusiasm.

This past Saturday, Tumbling ran under and Soccer over. I approached the field feeling excited yet apprehensive. They were playing a game and it was two young coaches vs. the whole group of boys. As soon as I arrived at the field, there was a big pileup and Rocketman flipped over a teammate’s head and got the wind knocked out of him.

He was crying (which he rarely does) and he trudged to the sidelines and threw himself into my arms. I gave him a hug and offered some TLC. Then I said, “I know that you got hurt, and that stinks. If you don’t think that you can play anymore, then that’s fine and we’ll go home. But if you think you are ok and still want to play, I would absolutely LOVE to see you. They will only be playing for a couple of more minutes, so you really need to make a choice now, before it’s too late and the game is over.”

Many parents I know would, in this situation, hope for their child to run in there, steal the ball away from the coach and take it to goal. But those weren’t even close to my wishes for my little boy that day. The small gestures he made following the choices he was given made every sensory activity, trip to therapy and battle for services worth it all.

Rocketman sighed deeply, turned around, and headed into the group of kids running toward the ball. One child was able to gain control of the ball and passed it to Rocketman. Rocketman took it, dribbled it out of bounds, but then back in , and attempted a kick on goal. He missed and someone else got the ball. But instead of crying and giving up, he kept right on up with that group of kids and ran and laughed and screamed with glee.

And I sat on the sidelines and cried. Because this is all that I have ever wished for my magical little boy: that he be happy. That he doesn’t feel the sting of disappointment in himself when he sees he is the only one that can’t do it. That he doesn’t lose the strong sense of confidence he has in himself as he is challenged in each area of his weaknesses.

But he was happy. He could DO IT!! They didn’t look like weaknesses anymore. He was keeping up with everyone else. He was laughing with everyone else! He was part of the team. He picked himself up from a good fall, jumped right in and became my superstar.

Elite travel teams are not part of my vocabulary, and I hope they don’t soon become so (although Bubba is hellbent on changing all that). My aspirations for my son are different than others’ might be for theirs. But I imagine I am every bit as proud of my sweet Rocketman as the parents whose child made the elite team or has college recruiters at 5. And I still believe what I believed at 8 and 12 and 14.

I like sports. They are fun to play. They get you outdoors and into the fresh air. They encourage teamwork and cultivate a sense of belonging. But all this other hoopla? It’s all just a little bit too intense for me.

Why “Breast is Best” Makes Me Cry

October 6, 2014

There is a new tax credit out for breastfeeding moms and my Facebook newsfeed has lit up about it. There are articles linked to articles linked to comments upon comments upon comments. And, of course, I scroll through the comments. Because those are the most interesting part of the article. Because there can be no simple article without a thread of conflict to follow.

The conflict revolves around a teen mom that receives WIC complaining that just because she formula feeds shouldn’t mean that the government shouldn’t help her, too. Of course her statement is full of flaws and nobody hesitates to tell her so. She holds her head high and argues every point like an indignant teenager and I chuckle and shake my head about the fact that this drama is unfolding in the comments section of an article about a new tax credit.

And then I read a comment that punches me in the gut. It throws out some statistic about how 99.9% of women are able to successfully breastfeed and those who cannot simply did not try hard enough. And it takes my breath away and brings me right back to that lonely dark place that I was 27 months ago.

When Rocketman was born, I expected to nurse him. I went to all the parenting classes. I learned that the moment he was born and the days and weeks following, we should spend our time skin to skin. That, naturally, he would find his way to the breast and that would be the beginning of something beautiful.

The delivery was beautiful. Immediately, we were skin to skin. Soon after I guided him to my breast and he seemed to know what to do. And that was beautiful too. And for an hour or two we basked in that beauty.

Rocketman was born in the late afternoon and we had many visitors show up soon after. But I had arrived at the hospital at midnight the night before and had not slept in two nights. The parenting classes said that I needed to have my baby by my side that entire time I was in the hospital, but the kind nurse that was on duty with me gently offered that it may be in mine and the baby’s best interest if I got some much needed sleep after a long hard delivery. After all, I would not be sleeping for months to follow.

I slept and the nurses did some supplementing with formula. I spent the rest of the time that I was in the hospital trying to nurse, but Rocketman would have none of it. He was a calm and content baby, but when I would take him to my breast he would scream and cry like mad and refuse to latch. The nurses tried to help to no avail. The lactation consultant came in and was at a loss. I left the hospital with a pump and a strong will to try. And also with my precious little infant that would turn my world upside down.

Rocketman slept one night by my bedside. And then the doctor called and said his bilirubin levels were too high and I needed to bring him back to the hospital to be under lights. Without me. And I cried like I have never cried before.

I would visit him every two hours throughout the day and attempt to nurse. And he would scream. And it was our bonding time before he had to be put back under lights. So we supplemented. And then he slept the night in the hospital while I cried myself to sleep at home. And they supplemented. And then I got to go get my baby and bring him home. Again.

It was such a wonderful, calm and quiet time. I rocked him in the glider. I read him nursery rhymes from a black and white bound Mother Goose book that was mine as a child. I took a million pictures of his million expressions. I sang and sang and sang. And he cooed and gurgled and was sweet and calm and content. Until it was time to eat. And I would bring him to my chest and he would scream and shout and cry. And I would bring him away from it and he would settle quietly and calmly.

So I tried, failed, pumped, and supplemented. I brought him to the pediatrician who said he was not gaining weight fast enough. I explained the situation I was having with him. She said she had never seen that happen before, but made me an appointment with the lactation consultant on staff. I attempted a feeding session in front of her. She said she had never seen that happen before either. She said to keep trying and gave me a couple of tips, but said that sometimes a baby’s personality prevails and I might just allow him to win this one.

I gave him more formula than breast milk so he could gain the needed weight back. I still went through the feeding, screaming, pumping, supplementing processes multiple times a day. It was getting old and trying and was the one dark spot on an otherwise joyous time.

I brought him back to the pediatrician for another weight check. He was growing well this time. The supplementing was giving him what he needed. He was thriving. I told her what I was going through to extract breast milk. I told her that, though I pumped every two hours every day, by the end of the day there was only enough milk to fill one bottle. She looked at me with compassion and asked me what type of stress was this bringing to the family? To the relationship between me and my new baby son? She asked me to look at him and see that he was thriving. She admitted that breast milk offered up all sorts of wonderful health advantages. But she did not think that those advantages outweighed the advantages of having a mother that was not physically and mentally shaken every two hours when feeding time came around. She repeated, “He is good. He is great. He is thriving. Look at him. It’s ok to let go.” She gave me that permission. And I bawled like a baby in her exam room, went home, and packed away the pump.

Rocketman was five weeks old. I bought “the best” formula and never looked back. When people questioned me, I explained that I had a strong willed child that would not take interest and that was that.

And Rocketman was good. In the beginning, I worried that not nursing him would prevent us from bonding. But did we ever bond. We became perfectly in sync. And he grew. He remained healthy. He was active and funny and so very verbal. He won the hearts of everyone he came into contact with. He developed a grand sense of humor. And a sense of empathy. And a sense of self- for sure. And then, when he was two years old, I got pregnant with his brother. Bubba.

When I was six months pregnant with Bubba, I met a Vietnamese woman. She was the mother of a potential ESL student that I needed to test in order to determine eligibility into the ESL program in my school district. I had never met her before. She grabbed my hand and rubbed it and expressed great pleasure at the fact that I exhibited a tremendous midsection ever growing beneath my elastic waisted black pants. She began rubbing my stomach furiously (something that made me both uncomfortable and intrigued), and shouting out facts that I had only learned quite recently myself…from my OBGYN: It’s a boy! His head is here, bottom there. Oh! You only have three more months to go! Now I was really intrigued.

As I walked her to a nearby table to discuss the testing procedure for her son, she continued holding on to my hands. As she rubbed and caressed them, a deeply satisfied look crossed her face. She looked me in the eye and said, “Oh. This boy. This boy is good boy. He very good boy. You have other boy too, yeah? He good boy too. Smart. Funny. Good boy too. But this boy. You never need to have girl to take care you. This boy here, he take care you always. He your Momma’s Boy. He your good Momma’s Boy and he take care you always. And you have a good life with these boys. So you testing my son now?”

Each time I share this, I get a different reaction. Some people respond that I should have run far from that crazy woman and not looked back. Some are as intrigued as I was. As for me, I chose to believe that she knew something that I didn’t beyond our place in time, and I was thankful that she chose to share that with me. I put my hand on my expanding midsection and smiled quietly to myself thinking, “Hi my Momma’s Boy.”

Three months later I was in the delivery room lying in some awkward position with an oxygen mask on my face after 14 hours of labor because my nurse was using “every trick in the book” to persuade the baby to move down since he had not budged in the 14 hours despite me being dilated and otherwise ready. And if he didn’t come down, he would have to be removed via c-section. And I just didn’t want that. My Momma’s Boy was four days late and perfectly content hanging exclusively with Momma.

My Momma’s Boy was going to nurse. Rocketman hadn’t. It had been a fluke. And I was never ok with it. But what made it ok was that this one would be different. He was my Momma’s Boy. And we would bond in the most primitive of ways as he suckled at my teat for many magnificent months, heck, years. Because that is the way that it was meant to be between mother and child and that is why I was made the way I was. I was woman. I used my body to house and deliver this child for 10 months. And I would continue to use it to nourish him.

He stayed in my room and I nursed. It seemed ok at first. He latched. He suckled. But as the nights in the hospital passed, his diapers were not wet often enough. And he was always hungry. And he was losing too much weight. And we needed to supplement.

Lactation consultants were called. I was not producing enough milk to fill his needs. I was instructed to rent a hospital grade pump. And nurse and then pump every two hours. Around the clock. And I did. I would pump 1/8 ounce of milk every two hours. Not enough to feed my growing and always- hungry- almost- 9- pound baby.

Rocketman was three. Such a demanding age. And I was always, always, attached to a breast pump. Rocketman’s sensory issues had yet to truly be revealed and he was having a hell of a time potty training. He would go on the floor. Or the deck. Or in my bed. And he always wanted me to get him juice. Or milk. Or read him a story. Or put Wonderpets on for him. And I was literally tethered to the god forsaken breast pump.

One day (in between pumping sessions), Rocketman grabbed the two bottles with the suction thingies on top, put them up against his little nipples and said, “Look! I’m Mommy!”

I didn’t care. I was going to produce more. This was a means to an end. Bubba would suckle from me. I would share these moments with him. We would bond.

I called the Warm Line at the hospital where Bubba was born dozens of times a day. I wrote pages of notes on their suggestions on increasing my supply. I followed everything they said. My supply remained low. I consulted Le Leche League in my area. They had just disbanded. I visited the lactation consultant through my pediatrician. She was at a loss. Lactation websites. Lactation cookies. Fenugreek tea. I. Tried. It. All. All while trying to take care of a super-demanding-used-to-be-only-child-with-potty-issues.

At one pediatrician appointment, I was almost in tears sharing my story of failure with the on duty pediatrician. I looked at her searchingly for answers and asked, “Does this happen to a lot of women???” And she looked at me perplexed and alarmed and stated crisply, “No. None.”

So then, what was wrong with me? That I could not provide adequate nourishment for my sweet little chub a lub? What kind of a woman was I? What if he had been born a hundred years ago, before formula? Would he just starve to death then? Because the one person who was supposed to be trusted to care for and nourish him was inadequate?

My anxiety was higher that it had ever been. (And that is something.) I cried all the time. Every two hours I would: try to feed and be faced with a screaming, crying baby. Feed a little formula until he was satiated and then try to feed again (more crying.) And then give up and pump. And pump and pump and pump. And at the end of the day I had one three ounce bottle semifilled to give my son.

I was sent to a real lactation specialist through the hospital. She costed $200 and hour that I didn’t have. Her name was Deb and she was in her 50s and had long grey wavy hair down to her waist. She was slim and lined and kind and warm. She felt my anxiety from across the waiting room.

The goal of our first session was to determine exactly how much breast milk Bubba was receiving from me. She weighed him upon our arrival to the very last gram. She then counseled me through a feeding, getting up close and personal and critiquing both mine and his technique and complimenting both. We were doing everything right! He was latching! After the feeding, she weighed him again. He had practically lost weight. Whatever he was getting from me was infinitesimal. And now he was crying from hunger. And I was feeding him formula.

Deb put me on a plan. Continue to pump every two hours. More fenugreek. More supplements, teas, cookies. And a prescription that you can only get in Canada, if you are going that way. Or from a compounding pharmacy an hour away. For hundreds of dollars out of pocket because insurance won’t cover it. (The whole lack of FDA approval thing.) And she had me order an SNS: a Supplemental Nursing System. $50 on Amazon.

The SNS was a bottle that could be filled with formula or breast milk and hung around the mother’s neck. Two very thin tubes led out of the bottle and were to be fastened with tape along a woman’s breast and to her nipples. The idea is that the baby would suckle at the mother’s barren breasts and receive his or her supplement from the bottle around her neck, simulating the act of breast feeding despite the lack of milk being produced by the mother.

I thought this was a fantastic invention and could not wait to use it. Epic failure. I can’t remember the details because I think I blocked them out. I just remember that every time we tried ( and yes I kept on going back for more) there was a flood of tears shed by both me and Bubba and I was covered in formula. Stinky sticky formula. And he was screaming in hunger.

This went on and on and on and on. For five months. I would not give up. The Canadian medication did increase my milk supply. Now instead of 1/8 an ounce a session, I wold get closer to a quarter. But Bubba was eating more and more. And I was still only filling a bottle a day. My anxiety was at a constant high. I still cried all of the time. And, in addition to all of that, I sweat profusely all the time…a side effect of the medication I presume.

My typical morning went something like this: wake up at the crack of dawn after being up every two hours to pump. (Hubs would feed the waking baby formula while I did so.) Attempt to feed. Fail. Feed a bottle. Pump. Explain to first child why I could not attend to his every need while I was pumping. Again. Store precious drops of milk. Clean entire pump system. Pack bottles of formula and water for going out. (Yes, we went out every day because the three year old with sensory issues would lose his mind in the house and that would be too ugly to take so we were off to a music class, the library, the playground, a playgroup, the fire station…you name it every single day.) Pack snacks. Pack diapers. Pull-ups. Wipes. Underwear. Toys. Coloring books. Crayons. Attempt to get the three year old changed and dressed. Often times he was overstimulated. Often times he had a dirty diaper. Often times he would opt to run and dance around the room with his poopy bum waving in my face as I tried to tackle and change him before the baby started to cry because it was time to attempt to feed, fail, and pump again.

And we would go out. And my peers would talk about breast feeding and how it was going as if it were no big deal. And as time marched on, it became clearer and clearer that that would never be my reality.

I couldn’t stop, though I knew it was over. Once I stopped that would be it. Quite probably forever. I would officially dry up. The hope would be gone. But my anxiety was so high that I was sent to be evaluated for an in-house postpartum depression facility at the hospital. (They didn’t admit me, but probably would had had I visited two weeks prior.) And I was sweating all of the time. And, honestly, I had more of a relationship with the mother fucking pump than with either of my children. And I HATED that thing.

On our first family excursion, Hubs, Rocketman, Bubba and I ventured off to an aquarium a state away. I researched ahead of time to confirm they had a place to nurse, er, pump. When the time came, we were escorted into an empty nurse’s office where I sat on one bed and pumped drops of milk out of my breasts while Hubs sat on the other bed and fed our baby. And I thought. How screwed up is this situation? All I want is to feed my baby. And this whole breast feeding thing is clearly not working out. But, I COULD be feeding my baby right now. Not tucked away in the nurses office with this hideous pump attached to my body, but perhaps on a bench next to some amazing exhibit that my boys could enjoy. Instead we are all cramped up in a nurse’s office/ storage room while Rocketman attempts to tool around the room in a forgotten wheelchair. And while I fail to bond with my new baby.

Deb called frequently to check up on me, always full of empathy and understanding. She had dedicated her career to helping woman nourish their babies in a beautiful way. She knew the research, the benefits of breast feeding versus formula. The long-term health advantages for both mother and child. And the last time she called she said to me, “When you first came to me, I asked you what you hoped to get out of our sessions together. You told me that you wanted to try everything there was to try to increase your production so that you could feed your baby. That if, in the end, you were unable to produce, you would know that you had tried it all. Well, you’ve tried it all. And have just kept going. I have been doing this for thirty years and I have never had a patient who has tried as hard as you without giving up. And I am so so sorry that this has not worked out for you. But I want you to know that, despite not being able to do what you have tried so hard to do, you are a wonderful mother to have worked this hard for the benefit of your child. And I have no doubt that he will continue to grow and thrive even without breast milk.”

And five months after Bubba protested leaving the warmth and comfort of my womb, I quit the meds, the fenugreek, the tea, the pump, the hours upon hours upon hours of my already full days spent researching and reading and wishing and let myself dry up.

And life got easier.

But now, even two years later, it still smarts. It smarts when I scroll through Facebook and see the articles linked to articles linked to research linked to comments about how breast is best and if you are too lazy or ignorant and chose to bottle feed your child, you deserve to be the mother of the sickly moron he most certainly will turn into. The moms who boast about going on two years of being able to nourish their precious child because of the choice and sacrifice they made for their child’s health. And the mom that throws that percentage out: 99.9 percent of women are able to breastfeed. Those that don’t didn’t try hard enough.

So maybe that’s me. That .1% that tried so hard that my entire family suffered for it, me that most. But, I don’t believe it. As I continue to scroll through comments, I often run into those from other women who apologetically offer that they tried, really they did! It was just not happening. They wanted it to, but it didn’t. They failed. They are so sorry. Because breast is best, we know. But it didn’t happen.

If breast feeding was easy for you, you rock. So glad. Congrats. If it was hard, and you tried all sorts of things and then it got easier, good for you! It was all worth it. But please, please, please. Understand that all is not so simple. There is no black and white. If someone is sitting at the mall bottle feeding their child formula, don’t snarl and assume they are lazy. That they didn’t try hard enough. That they were not educated. Everyone has their own story to tell and chances are, you don’t know it. So, like hippie Debra, the lactation consultant that showed me more understanding and empathy than anyone ever has, have some compassion.

I’m ok now. My boys are healthy. And smart. And life is so much easier. Really than it’s ever been since I had Rocketman. And, though it seems to not be in the cards, if by some miracle I had another child, I would face breastfeeding with the same amount of determination as I did with Bubba. But I wouldn’t let it consume me. I wouldn’t worry about other mothers’ judgements of me. I wouldn’t let it get in the way of my time spent with my children. Because, of the many things I have learned on this short journey, for me this much is true: Quality outweighs quantity. And I don’t mean the grade of the fluid that my child is ingesting. I mean that I may not get (or even want) to spend every waking moment of my life consumed with my children. But the moments that I do spend are precious and should be seized and appreciated. And if that means cuddling up in a rocker with a bottle of Enfamil and singing lullabies to my infant because my breasts are barren, so be it. My boys do not have a doubt in their minds that I love them with all I have to give. And that I will do whatever it takes to give them the best of myself so that they can be the best that they can be.

Besides, I was born in 1977 and bottle fed with pride. And I think I may have turned out pretty ok.

Being Present for Every Last Time

September 19, 2014

I just read a poem that somebody posted on Facebook. It was sent from a mother-in-law to a friend that just had her third baby. (Still feeling a little touchy about that.) The bottom line was that: as hard as parenting is, we need to cherish every moment while our children are young. That these mundane things that take for granted: bathing them, changing them, holding their hands as they cross the street, will one day be no more. One day our child will no longer want to be bathed, changed, held. And when that “last time” comes, we will break down and cry and realize how much we should have treasured it while it was happening.

So, I read it, and it made me a bit sad. But I wasn’t devastated. Especially following some reflection of my own that I had been doing a bit earlier. Instead, I felt that the sentiment was rather dire and decided to continue and read the comment section of the post to see how others felt about it.

Some said they were weeping. One was relieved to have read this because she had just gotten through changing another diaper and wasn’t appreciating it enough. And then one mother of 4 and grandmother of 9 spoke up. She said that throughout her parenting, she witnessed many “last times,” but was never so deeply saddened by these as every last time was replaced with some mark of achievement and independence as the child gained growth and confidence. And that there was so much victory and pride in that, it made the “last time” of the prior seem less significant.

She went on to say that she had lost a grandchild at 2 years of age. And that that was a different story entirely. That the death of that child presented a true last time to all he would ever be and that the melancholy sentiment in the poem could not begin to compare to the true grief in that. And that is when I wept.

There is so much pressure on us today to appreciate every moment…even if it sucks…because all too soon it will be gone. And, of course, it is mostly true. I’ve been looking through all of my friends’ back to school pictures of their kids and thinking, “Wasn’t that child just born? Why is he wearing a backpack?” “He’s in first grade???” “She’s in MIDDLE school???” Or the kids who were toddlers when I was in college that are graduating from high school. Getting married. Having BABIES??? WTF??!

It goes by really fast.

But there are times that suck.

When Bubba was born and Rocketman was turning three, there were times that sucked. Bubba’s birth was beautiful and so was he. tghjgRocketman’s first time meeting him was the most beautiful event I have ever witnessed and their relationship was magical right from the start. I loved and cherished that little baby and toddler. And, in that first year, we had some great times. We went to a music class where Rocketman was the star of the show and Bubba began to come alive and it was the highlight of our weeks. We cuddled. We had dance parties. Playdates with the Moms Club. Good times.

But a whole lot of stuff that year sucked. Because, a lot of that first year was: me struggling with nursing, being on medication to try to increase my milk supply, feeling like a failure as a mother for not producing enough, feeling like a failure as a woman for not being able to do what all women are supposed to be able to do. Being anxious ALL THE TIME. All the time. Every moment between waking up and sleeping and throughout the night in my dreams. Feeling like a mess with breast pumps hanging off me while Rocketman peed on the floor and popped in his underwear.

I couldn’t send Rocketman to preschool (which he desperately needed) because he wouldn’t potty train. Every trip out the door would require me to pack a breast pump, meds, bottles, formula, purified water, diapers for two, changes of clothes for two, a breast feeding apron, snacks and changes of underwear. Rocketman was always overstimulated before we left the house (which I didn’t realize was related to sensory issues at the time) and it took hours trying to dress him, keep him clean and still and get him to the car. Bubba was SO fantastic. But he was hungry all the time and every feeding meant some bottle, an attempt to breastfeed, a failure to breastfeed and pumping. But I was so tired and so anxious and felt like I was losing my mind to the point that I needed to be evaluated for an in-house program at the hospital for post-partum depression. When it was time to go back to work when Bubba was 8 months old, I was chomping at the bit.

We are now a year out from the culmination of that crazy year. Bubba is 2 and Rocketman 5. And things are (dare I say it) EASY compared to that precious time. Rocketman goes to the bathroom in the toilet, for one. He is receiving treatment for his sensory issues and is making tremendous progress in so many areas, including that of self-regulation. He amazes me EVERY day with the amount of kindness, sensitivity and awareness he possesses and I look forward to seeing him and just hanging out and talking at the end of a long day.

Bubba has grown into a strong, healthy, active toddler, despite the lack of breast milk he received. He is smart and fun, funny and sweet. He loves to cuddle with Mommy, but adores his big brother above all else. And today was beautiful.

Bubba and I brought Rocketman to school and then set out on errands around town. In my diaper bag, I carried only diapers and wipes for one. And a juice box just in case. When we got home, Bubba was tired, so we put on Barney and cuddled in my bed. When Barney was over, I read him books, which he recited with me (“Bubbles bubbles in my hair, bubbles bubbles EVERYWHERE!”) and then we went to his bedroom for some songs. I sang nursery rhymes from a big red book while he sang along, cuddling up in his “wankie.” When “This Little Piggy” turned up, I asked for his little tooties and he laughed and poked them out from under the blanket, scrunching up his little face and body in anticipation of the “Wee, wee, wee…” part. When we read “Rock-a-bye baby” (the song 2-year-old Rocketman would sing to Bubba when he was in my belly), he climbed into my arms, wankie and all as I sang and rocked through three verses. And I thought THESE!!! THESE MOMENTS!!

I don’t want to miss them when they are gone, though I know I will. I just want to savor them while they are here. Not all of them, though. Not the high anxiety, always sweating, tired of listening to that mother fucking breast pump times. But that time today. When Bubba climbed out of his little toddler bed wrapped in his wankie and into my arms so that I could rock him and sing “Rock-a-by-Baby” while the ceiling fan hummed quietly and whispered cool relief to the final dog days of summer in early September 2014.

In January, I attended a “Glow in the Dark” New Years Eve party at dear friends’ home. On the wall they had a big piece of chart paper that was labeled, “New Years Resolutions- 2014.” Guests would pass by throughout the night and scribble everything from funny to sentimental to profane. I wandered over myself some time before the ball dropped and picked up the glowing highlighter, not knowing at all what I was going to write. As I always do when I am writing, I simply applied the pen to paper and let it write for itself. It wrote: Be Present.

I was present the entire year that Rocketman was born, and I remember it well. I was present for his first year and well into his second, while I was pregnant with Bubba. And then I kinda lost it. I lost that first year with Bubba and R’s year of three. Last year, one and four, I remember as better than the previous one, but also very hard as it began with R being evaluated as having some special needs and played out as spending the entire year trying to get the needs met.

But now they are being met. And now they are two and five. And their needs are fewer. But they are still young. And fun, and funny. There have been some “lasts” in the past two years. R’s last poopy pull-up- July 2013…I know that. Bubba’s last bottle….probably a ton more. But I’m struggling to think of them. Because I am here right now, still living it and it is getting so much easier and pleasurable. That I had the time to rock my “baby” and sing to him because he asked me to. That is beautiful. Even if it never happens again, it’s still beautiful. And the most beautiful thing of all, was that it happened because I was able to “be present.” Nothing else mattered at that moment. Not making lunch, chasing a toddler, letting out the dog, answering the phone, tending to another child. It was just me and Bubba that existed in that moment that brought so much joy to us both.

I finished reading that grieving grandmother’s comment and scrolled down to peruse a few more. One complained that it wasn’t really a poem, but prose. Another said she was weeping. But one dad thanked the woman for sharing, saying that he had lost a child at 11 months. And then someone quoted my favorite, Dr. Suess, and wrote, “Don’t cry because it’s over, smile because it happened.”  And that only reminded me of Rocketman, old soul that he is, on the eve of his fourth birthday when I was pouring over baby pictures and lamenting about where the year had gone and he turned to me and said, “I’m right here, Mom. If you are really that sad, you can just cuddle me like I’m a baby and then we will both be happy.”

I am blessed with every moment I am here on Earth with my beautiful boys. Whether they are two years or twenty two years old, I will cherish our time spent together and will continue to marvel at their growth and achievements. I will continue to work on being present and try to record those moments afterward so that I can reflect on them years after they have happened for the “last time.”


November 10, 2013

I attended my first IEP meeting yesterday.  It actually wasn’t my first.  I probably attend one every other month and have been doing so for the past 13 years. But this was my first on the other side of the table.  For the first time, my name noted “parent” next to it as opposed to “teacher.” And that changed everything.

On a side note,

I’m officially changing B’s blog name to Rocketman. He inspired me yesterday, the day of the first IEP meeting where he would be the main topic of conversation and where his name (his real name, not Rocketman) would top all of the 13 paged document that I would have to sign to indicate my approval of the plan. “Rocketman” came from a morning made more difficult than we are used to due to the typical November in New England drop in temperature. This led to chaos of misplaced gloves (that were in his pocket), the panic of a missing hat (that was on his head), and the delay of taking off all of his layers once he arrived at school (despite my constant urging). A bit frustrated, I exclaimed, “My goodness! You are out in space today!” As which point a big goofy smile spread across his four year old face as he responded, “Coool! I love outer space!”  On my way back to my car, ready to head to work with my overstuffed brain overwhelming me, Elton John’s “Rocketman” came on the radio. And I smiled and thought, “Yes.  That is who he is.  My goofy little Rocketman.”

So now we are back at the IEP table where I am on the other side facing a speech pathologist and the head of Child Outreach. Ready to fight my fight and to show them I know a thing or two about education, about the law, about my child’s rights as a soon-to-be special needs student. But it didn’t take much. Apparently they were on my side.  Apparently they seem to have a desire to meet my child’s needs as well. Or so it seems so far.

So it wasn’t a fight or an argument or a disinterest that propelled the meeting. It was a serious, thoughtful discussion about Rocketman and how his needs might be eventually met. And why it is imperative that his needs be met.

I listened and listened and listened.  And then it was my turn to talk. And they were giving me free reign to talk about my kid. Which was strange. Because everyone wants to just talk and talk about their kids, but who ever gives them free reign to do so? But there they were, asking questions about Rocketman. Wondering how it was that while he has an exceedingly strong social emotional skill set, he struggles with sensory issues to the point where he cannot wear a button-down shirt without putting up a fight, runs blindly screaming during a fireworks show and gets so overstimulated by his baby brother that he flaps, grunts and stomps until we have to send him to his room for a break. Or a time out.

And the head of Child Outreach folded her arms thoughtfully and said, “What is so unusual about this case is that, typically, children that have these types of sensory issues struggle with social issues as well. Whereas the list of strengths that you just handed me are actually really good strengths to have.”  Which is fabulous and frustrating at the same time. Because, while it’s nice that my sensory kid does not fit the typical sensory profile, he still has ALL THESE ISSUES. And the issues are impacting his life, and mine, in wearisome, troublesome ways.

I am hopeful.  I have a little boy who is very smart, very sweet and very well adaptable.  He has a magnificent preschool teacher, a empathic pediatrician and a proactive mother.  He has strong, smart women in his life who care very much about him and will move mountains to get him what he needs.  Or at least I will.  I am ready to move mountains to get him what he needs. My silly and smart, sweet and so very funny Rocketman.

Look, Up in the Sky…

August 11, 2013

I’ll admit it.  I have sensory issues.  I have since I was small.  I was a great eater, but refused to eat water chestnuts because of their watery crunch. I preferred not to wear socks. I cannot touch styrofoam without great discomfort, and the sound of its squeak will sent me running to another room with my hands over my ears.

This is why there should be no surprise that my first born starting showing signs of having sensory issues at about 2 years old.  A fire engine was parked in a neighborhood that we were visiting in preparation for the fireworks later that night. The firefighters were letting the neighborhood kids check out the engine and as we were passing by, they let out a quick blast of the horn that sent the usual happy, mellow B into hysterics that lasted the rest of the night and eliminated the option of us sticking around to watch the fireworks.

Since that time, B has had several incidents of going from perfectly normal to hysterical within seconds when confronted with loud noise, or even the prospect of it. I was late for work one morning because a fire truck was parked outside of my neighbors house and, while B thought it was the coolest thing to watch from the window, he clawed the at the doorframe screaming in fear as I tried to move him from the house to the car. We left two annual Fourth of July parties because the minute the fireworks started he ran aimlessly screaming until someone caught him and brought him to some sort of shelter. And while my friends all exchanged reviews of the newest Pixar film out in the movie theatre, I cringed at the memory of B throwing himself to the floor and curling into a fetal position outside the door of the “movie night” room at a hotel, screaming and pleading for us not to make him go inside.

The pediatrician felt it was a common occurrence for two and then three year olds to be sensitive to sound.  I thought that his seemed a lot more dramatic than other sensitivities I had seen in his peers. This was confirmed the night that we took him to his first live theatre production , Sesame Street Live, when he was two and a half and I was 6 months pregnant with C. He had loved Elmo since he turned 2 and we were excited for the opportunity to see him live on stage singing and dancing.  He was happy and excited all day and we were thrilled with anticipation.  All went well until Bert and Ernie came on stage to open the show with a song.  The music started playing and hundreds of toddlers jumped up and down dancing and singing.  And my child let out a primal scream and ran through the entire theatre and out into the lobby.  Two parents and six ushers spent the entire first act trying to calm him enough to get him to reenter the theatre. Following intermission, after spending the first half of the show that we paid big bucks to get front row seats for in the lobby, a very sweet usher was able to convince him to sit in a balcony seat to watch the second half of the show. He lasted through 3 notes of Cookie Monster’s ballad before again hitting the ground running and climbing up a very steep set of stairs to the very back of the theatre in an attempt to escape. When he got to the top, he ran back and forth along the very last (empty) aisle, desperate for an escape hatch. Finally, he sat on my lap in the theatre chair that was the farthest away from the stage for the last 20 minutes of the show. Only because he was too exhausted to do otherwise.

One of the wonderful ushers who had tried so much to help during this whole traumatic ordeal tried, at one point, to convince me that this was not uncommon. Two year olds have sensitivities to noise and other types of stimulation and that he and I were not alone. I looked at her and wearily pointed out that he was the only child in the entire theatre that was hyperventilating in this lobby while Super Grover was flying over our front row seat. There was nothing to be said from there.

So, this sound-sensory stuff has been what we have been dealing with for the past two years.  We try to deal with it with a great deal of preparation, understanding, and the choice to leave the situation if it gets too overwhelming.  Since he has turned 4, however, B has done some pretty brave things in an attempt to conquer his fears.

Two months ago, we took B, a grand lover of music, to his first rock concert. It was Los Straightjackets and it was in an old mill that had been converted to art studios and a music venue. We provided him with earplugs and he danced all night long. He even got the drummer’s autograph at the end.  After that, B felt like he could face anything. We attending his first movie theatre movie, Monsters University, a month later and he sat enthralled for over 2 hours. We went to Sesame Place in PA and sat through an Elmo Rocks concert and a fireworks show with little incident. (Though I did initially need to chase him though a crowd of people as he aimlessly ran shouting, “We need to get inside!!  I don’t like this at all!!!”) I managed to calm him in the end and when asked a week later what kind of cake he wanted for his birthday, he requested a “Fireworks Cake!” Who knew.

Which, finally, brings me to tonight when a popular local children’s band was performing the final concert in a local outdoor concert series.  In preparation for the event, I spent some time with him on You Tube watching clips of their concert and laughing at and clapping to their songs. When he asked if we had seen the band before, I told him the truth.  We had gone to see him when he was two, but he had thought they were too loud and had run through the halls of the school where they were performing in an effort to escape. I explained that we could sit anywhere he chose, close to the stage and speakers, or more far away where it would not be so loud. He seemed to take this into consideration and then walked away.

He came back 5 minutes later wearing a Batman shirt, a Spiderman mask and asking me to secure his Superman cape. He asked if he could wear this outfit to the show. I told him that of course he could.  He said, “Good.  Because I have the best idea.  If the music gets too loud and I get too scared, I will put down my mask and it will protect me.” How could I argue with that logic.

So my big brave Bat-Spider-SuperMan attending the show. He chose a spot farther from the stage, but did spend a good deal of the time sitting up in front of the stage with many of the other children. There was no hysterical screaming, no running without destination, no fetal positions. On one or two occasions, I saw him tip his mask over his face when things seemed a bit more overwhelming.  But most of the time, Spiderman’s face rested on his head, with little strands of his blonde hair sticking through the eyeholes.

We’ve come a long way since the day of the first fire engine blast and I feel that we have won this battle with a whole lot of understanding, preparation and the allowance of whatever type of security needed to feel comfortable.  I am so proud today of my amazing SuperB.