Archive for the ‘Special Needs’ Category

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.

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.


August 30, 2013

B, C and I attended our last music class of the summer today. It is a class for toddlers and preschoolers that is run by an elementary school teacher that I worked with. He is wonderful, the kids love it and so do I.  Every class, the teacher reads one story aloud to the children. Today’s read aloud was “Mortimer” by Robert Munsch.

The teacher introduced  the read aloud by building some background.  He told the children that Mortimer was a boy who had trouble falling asleep and asked if any of the children had trouble falling asleep.  Of course my B, who has had over a year’s worth of struggles with sleep, (If he doesn’t nap during the day he is tired but falls asleep at 8.  If he naps he is rejuvenated but falls asleep at 11 and battles with us every hour until then) raises his hand. He announces to the class that he sometimes has trouble falling asleep but makes sure that he is in bed by 10:00 because that is the time that the police come to the house to see if all children are asleep and if they are not the parents get in trouble. (I may or may not have told that story a few times in great desperation not realizing that my little white…story would be exposed in front of a colleague, several parents and grandparents and a group of toddlers and preschoolers.) Luckily, the teacher responded that there happened to be police in the story that he was about to read (they were actually called because the child would not go to sleep and was being too noisy!), too, and it became a great opener for him to begin reading the book.

The story was delightful and quite relavant and when my hubs asked about music class at dinnertime, Ben was quick to recount the story.  I remembered that there were several Robert Munsch ebooks that I could access through my library and at bedtime tonight we picked one to read and laughed the whole way through.

I have been teaching elementary school for fifteen years but have somehow missed the bulk of this man’s work.  Curious, I went onto his website to read his biography.  It was incredibly interesting and inspiring.  I learned that this enormously successful author gets most of his stories from listening to children. In his bio, Robert Munsch states, “I hope that everyone will talk to their kids honestly, listen to them, and help them do their best with their own challenges.”

This is something that I have always believed.  What children think, feel and say is enormously important and many adults seem not to respect that. But it was a good reminder to me. Four-year-old B has a great deal to say. But he says it through stutters of um, um, um, um, the, the, the, the, that, that, that, that… It can prove to be very frustrating and I often would like to cut him off and finish his sentence and move on with my day. Especially when I am tired. But then, that wouldn’t be fair. It would make it appear that, as his mother and the person who should love him the most, I am disinterested in what he has to share. And then, would that mean that what he has to share lacks importance?

So, this impromptu author study will be a reminder, then, of how important it is to listen to children.  Their perspectives are fresh and not jaded. They experience without judgement and report  without bias. They are funny. They are bright. And they are a piece of who we are that has been lost over years of hardened reality . We should listen.  I will listen. And I will appreciate and respect the amazing stories and perspectives that come from these silly little people that still have so much to teach us about life.