Sea’s Story

A bit of a different post today…today is Sea’s story. His journey is where we began to delve into the world of special needs, and where we started meeting some truly wonderful doctors and specialists. This is an abridged version, as Sea is almost 9.

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As parents, we become familiar with those milestones that our children are supposed to reach – babbling, self feeding, rolling over, sitting up, crawling, talking, walking. When they’re not met, we begin to wonder why and, quite frankly, to get nervous.

Sea was pretty verbal, smiled a lot, laughed, and cried – what kid who at the time had major GERD, was intolerant to soy and dairy, wouldn’t? We had to keep him propped on his side and on an incline when he slept for the first few months. Baby spit up, excema, gas were all part of the fun. Outside of that, everything seemed like it was going well until we reached that crawling milestone.

Sea was a bit floppy in general and had some difficulties sitting up straight on his own, but no alarms were sounded until he tried to crawl. He could get himself up on his hands and knees, but couldn’t hold himself there – his knees would instantly splay out to the side, making him resemble a kid trying to do “frog” in a yoga class. Except, this wasn’t yoga class, this was crawling. No surprise, walking was also delayed.

His pediatrician recommended an evaluation by Early Intervention. A team of specialists came out to the apartment (Sea was around 8 or 9 mo old at the time) to play with and evaluate Sea. They discovered that  he met the qualifications for physical therapy (PT) and occupational therapy (OT). The PT would come out to the apartment once or twice per week and work with Sea. I had my “homework” to do with him as well. In addition, Sea qualified for group services. So, once per week he would get together would a bunch of other EI kids, play, and work on fine and gross motor skills.

Time passed, and in conjunction with another life change – my husband and I divorcing – we moved and transfered to the Northshore EI. Sea was reevaluated and given additional services (PT, OT, SL) and group. He now had a couple of different therapists working with him on building up his muscle tone and coordination.

Around this time, I noticed that Sea had a strong dislike towards certain textures. He despised getting anything on his hands, especially if it was sticky or slimy. This sensory issue has since progressed to his needing all of the tags cut out of his clothes, having to feel the inside of his shirts to make sure they are soft, and only willing to wear track pants, maybe chinos, but absolutely, positively NEVER EVER jeans. Sea will wear filthy clothes before he’ll put on a pair of clothes that “bothers” him. A brushing program was integrated into his course of treatment to desensitize his skin…it worked for a while.

In the meantime, Sea’s pediatrician referred him to a neurologist at Children’s Hospital Boston (“the good” – a post forthcoming). For intents and purposes I’ll call him DR for this post. DR was very thorough examining Sea, and made it very clear that he absolutely needed to be receiving services and would continue to need services for a while. DR, after following Sea for a bit, had mentioned that the low muscle tone (congenital hypotonia) could have a few different etiologies, or if we were lucky, would have one of those unexplained causes of hypotonia. What were we looking at? A few different forms of Muscular Dystrophy, and a few other conditions that, if he had them (and I don’t remember what they are. I think I may have blocked them from my memory), would show up between the ages of 7 and 9.

DR referred Sea to a neuromuscular specialist at Children’s Hospital Boston. After meeting with him (we’ll call him DK) a few times, DK recommended Sea have an electromyogram (EMG) to make sure his muscles were receiving signals properly, and based on those results a muscle biopsy. Fortunately, the EMG was normal. And, DK did not feel it necessary to follow through with the muscle biopsy. Phew!

DR has been seeing Seamus since he was 2 or 3…he’s been there to answer any questions, has been pointedly honest and open about any disorders he is thinking about, and is a willing and key part of Sea’s team whom I can email at any time with any questions.

Continuing on….Sea has had a history of migraine headaches, at 8. At their worst, he would have a couple per week – the kind of migraine where you get sick to your stomach and sleep for hours when your head stops pounding long enough for you to sleep. On top of that, Sea was having staring spells. He would sit at the table, stare at something, and be someplace else. DR, given Sea’s history, ordered an electroencephalogram (EEG), to check on his brain activity and rule out any seizures. Fortunately, that all came back normal as well.

Sea’s been followed up with genetic testing (all normal), physiatrist, sleep study and evaluated by a developmental-behavioral pediatrician, to 1. rule out any ASD, 2. to determine the cause of the low muscle tone. He recently had a PT evaluation at Children’s Hospital Boston…he still has low tone and will need to remain physically active in order to keep up with his peers, but more concerning where the activities that required cross-body movements: jumping jacks, running man type of lunges (same hand, same foot, opposite hand and foot, shoe tying, alternating feet while walking down stairs, etc). Validation that someone sees the challenges that I see.

Then again, when your 8 year old repeats the most basic beginning swim (beginner and advanced) lesson level 5 times and still isn’t bumped up to the next level, it makes you question why. I talked to the swim director, of course. And wouldn’t you know, strength and coordination were the two reasons. I knew it wasn’t a question of whether or not he liked the water – Sea loves water and will happily splash in the bath tub or the surf at the beach for hours.

The PT mentioned a disorder that she believes Sea fits the criteria for, that he could get services for. So, we wait to see DR or for his follow up with DK in Sept.

A lot has changed…this smiling face hasn’t changed much…

From the days of sensory and motor integration…

To learning how to balance…

…Or be silly… 

To wear something on his face…

and combine words with movement…

…To work on controlling that tongue when overstimulated or challenged (we’re still working with this)…  

…To want to have his hair cut…

…To just enjoy every bit of life despite the challenges we’re faced with…
…To catch as many frogs, toads, and snakes as he can

…Ride his scooter (yay!! New accomplishment this year!), and keep throwing that ball like a kid a few years older than him and better than his mom (after all, I am a girl!)…

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…The Bad, and the Ugly

Usually I don’t write when I’m angry and frustrated, but I am beyond myself today.  I know that after the fire, the plains will be washed clean by cleansing rain in the form of tears and I will let go of this moment. It will eventually become nothing more than a grain of dirt washed away into the ocean and nearly forgotten about.

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We all have our run ins with good doctors, bad doctors, and the ugly. Today fell somewhere in between all three for different reasons. Of course, it’s the bad and the ugly that have me frustrated beyond all means, angry for not being heard, and ready for tears with a little lost hope.

This morning, I attended a feedback appointment with the boys’ psychiatrist to discuss Seamus’ evaluation (recommended by another physician to rule out an anxiety and separation disorder based on how Sea scored himself). Fortunately, he has no concerns with either of those and does not recommend treatment and/or medication at this point in time – the good.

The bad and the ugly.

The conversation divulged towards discussing both of the boys, how they are doing at home, their relationship with their father, and the psychiatrist’s “diagnoses” for both boys. Sea isn’t on the spectrum, I get that. He may have some spectrum-like behaviors, but doesn’t qualify for a diagnosis. Great! Wonderful news! Wes, on the other hand, was placed on the spectrum by two other doctors, three different therapists, and was considered “borderline” by this doctor at the last appointment. Today, this doctor said that Wesley is non-symptomatic of having an ASD – that he is a bit off, a bit rigid, and a bit quirky. What?!

So, we’re disregarding the inability to empathize with others except a few people he is extremely close to, we’re disregarding the use of repetitive phrases, we’re disregarding the lack of eye contact, the hyperfocus on Sci-fy/Fantasy/Mythology, the inability to identify his own feelings and emotions (except for anger), the complete loss of ability to use the skills and intellect he has during an emotional/challenging situation, the difficulties he has in social situations, the hypersensitivity and feeling of being overwhelmed in social situations his peers have no problem with (which you can read on his face!), his difficulty and lack of pragmatic skills, in turn-taking during conversations, etc???!!!

This doctor argued that the evaluations Wes has been given have looked at a snapshot of his life at a particular point in time and isn’t accurate. Well, I have to say the same of his evaluation – the couple of hours he spent “evaluating” Wesley was a snapshot of his life at a particular point in time and isn’t accurate. It doesn’t catch him at his best, nor does it catch him at his worst. To completely discount what a parent observes, what other doctors and therapists have observed, is infuriating and incredibly frustrating. And, it makes me feel that I have lost a little bit of hope, that I’ve lost a step in being able to do the absolute best for and provide the best services possible to continue to support Wesley’s growth and development.

There are other reasons why this falls into the bad and the ugly that I won’t get into details on, but I will say that I am ONE WOMAN. ONE. JUST ONE. I am a single mom of not one, but two children that I am busting my fanny raising in the best way possible, that I have made sacrifices for and have delayed what I want to do with my life until they have reached a point where they are stable and steady enough for me to move forward on my path a bit more. It is not my responsibility to solve other people’s relationships with the boys, it’s not. I’ve been there, done and tried that, and did nothing but waste my time and the boys’ time. I am not super woman, or maybe I am a super woman, but I will not take the time and effort to repair something that I did not break, that I did not contribute to its demise. I WILL take the time and effort to foster whatever positive relationships they have that are directly related to their time spent with me and I will and do take the time and effort to get them the help and services they need to stay on par with, or move towards being on par with, their peers. I will and do take the effort each and every day to mirror, to teach, and to guide so that they learn, so that scripting becomes as easy and familiar as the back of their hand when they’re upset, not just when they’re calm, so that Wes and Sea laugh and smile each and every day.

So, to the bad and the ugly side of this particular doctor, when you see what I see, when you hear what I hear, when you do what I do, when you listen, truly listen to what I say, to what I see and hear every day, I will consider your opinion regarding diagnoses. Until then, thank you for supporting me in not wanting to medicate either child and, so long.

Up next, the Good…

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Questions for the ASD Community

To quote George RR Martins “winter is coming.” But, for Spectrum families, it often isn’t winter that we fear, it’s summer.

With the change in schedule, in routine, in seeing the people our children have come to expect to see 5 days out of the week, summer can be a time of uncertainty, of change, of possible upheaval and breakdowns. One question I have to ask, particularly to other single Spectrum parents, is how do you do it? As a single mom of two boys, I’ve planned my schedule very carefully around my boys’ schedules, needs, and appointments. Yet, it’s been a struggle to be able to work enough amidst all of the demands of being a single mom with two young boys, one of which is on the high functioning end of the spectrum.

I’d love to be able to work more, but with summer approaching, I don’t know how or if I can. Wesley can’t handle large summer programs for NT children. Although he was in a half-day summer program with the school last year, I’ve had to put into force our “stay put” rights in order for him to obtain the same service this year. I’m worried. Without summer services, Wes loses ground on the social and emotional skill set that he’s worked hard on during the school year. The interactions that give him the opportunity to practice those skills, disappear.

I have to ask the community at large – do you know of a summer program in Eastern Massachusetts that caters to high functioning ASD children, that you would highly recommend? And, do you know of any resources out there that can help defray or eliminate the cost?

I, like many other parents, am doing all that I can to prevent Wesley from slipping through the cracks this summer all while also taking care of his brother, trying to stay on my feet, and contribute more financially so we can move into our own home vs the one that we share with my parents. Any feedback would be much appreciated.

All the best, Amanda

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I Won’t Give Up

I haven’t written in months. Truth be told, I was too caught up in the daily grind, in the schedule of our lives, and when I did have time to write, I was too exhausted or had no motivation to write.

As I sat to write this blog, originally I was angry, frustrated, trying to comprehend why others don’t understand, why they just don’t get it. And, as usual, as I write and approach my computer, the anger melts away, and an outpouring of love, hope, and perseverance leaves my heart and fingers…


We’ve had numerous evaluations these past few months and more over the next few months. I’m looking for answers, for explanations, for the missing pieces of the jigsaw puzzle that will help me understand my boys more, that will give more clues on what I can do, how I can help them to shine their brightest in their own unique ways. Along the road, we’ve encountered our bumps, our challenges. Some aren’t terribly significant, barely making a blip on the radar. Others are a bit higher up on the scale.

One of the biggest challenges is having the school accept Tufts’ diagnosis of Wesley. Just accept it, agree with it, stop saying “we don’t see x, y, and z.” I’m not asking for a tremendous deal of additional services at this point in time. Instead, I’m asking for them to admit that they see what I see, what others see, what the professionals who diagnose thousands of other kids see; to see what is right there in front of them if they’d only take the time to look and see Wesley for who he is, how he is – not see him as someone who “is a role model student” one day and when his challenges arise see him as someone who “we’re extremely concerned about.” One day at a time, I stand here and support my son (support both of my sons as Seamus has his challenges too which he is currently being evaluated for), support him when and where he needs it, stand here as his rock – the one person he knows is so steady that when his world quakes I can stand still and strong, ground him, until his earthquake stops – stand here and provide a little wind under his wings so he too can shine in his own unique and quirky way.

Seamus has already had a long road – (story to be published later) one that we still work with and navigate on and around: the hypersensitivity to clothing, to certain types of touch; the low muscle tone he’s had since an infant that makes doing things other 8 year olds do without any challenges either challenging or, at times, exhausting for him; the screaming temper tantrums and attachments to certain animals (that travel with him everywhere); the tendency to fly off the handle and energetically and physically bounce around like a pinball when playing some of the calmest of games, to the full body stims when playing video games, and the tendency to spin himself in circles when we’re in grocery stores. Still, I support him as I can, evaluating and reevaluating to keep him going strong, to help him keep up physically and emotionally with his peers, to encourage his interests so his quirky light also shines.

A few events, in particular, inspired me to write today.

Yesterday while at Target purchasing Wesley a copy of Star Wars for Kinect and a scooter for Seamus (which we later had to order online), there were moments of that bright smile, that happiness on Wes’ face and in his blue eyes, that he reserves for people he knows very well – the smile that truly lights up his eyes and makes them sparkle, with a hint of goofiness and innocence beneath it. Needless to say, by the time we made it to the register, the smile was gone.

This was not a concern. It’s just part of life for us, part of the daily detective work that involves deep listening and deep seeing to read Wesley. He was thrilled to get his new game. Thrilled! Did it show on his face by then? No, but no problem, not for us. The cashier, however, was a different story. “What’s the matter? Why don’t you smile? Aren’t you happy you’re getting a game?”

So on launches the opportunity for advocacy…”my son has an Autism Spectrum Disorder. Having a flat affect and difficulty showing emotions is a characteristic of it. He is happy. He’s actually ecstatic right now, but doesn’t know how to show it.” Thereby follows the look from Wes which clearly states “what the heck is her problem?”…

Later that evening, as every Wed. evening, Wes’ play therapist came to work with him for an hour. One hour. One. Hour. He and his therapist were in the TV room, I was one room over from them, and my parents, in the kitchen, one room over from me. I overhear my Dad saying “Is she here? What time does she leave? (Note: the same time every week). I’m so tired of this stuff. I’ve had enough of this” (again).

Well, you know what? So haven’t I. I’m tired of feeling like I’m walking on so many eggshells that I’ll fall through the earth. I’m tired of not being able to speak my mind as fully as I’d like for fear I will lose the roof over my head. Perhaps for once, when I’m overwhelmed, or have hit my own sensory overload button, I’d like to flip my lid, throw an adult temper tantrum, scream until I can’t scream anymore, or swear up the wahzoo. But I don’t and I can’t and I CHOOSE NOT TO.

Why? It doesn’t do any good, it doesn’t solve anything, it doesn’t get anyone anywhere. As a matter of fact, it often creates more emotionality and upheaval until the lava reaches the top of the volcano and explodes. In an environment with highly sensitive kids we have to stay calm, stay calm so they can regulate themselves more effectively, stay calm and give them air (space) and water and a bit of earth (grounding) until their earthquake or volcanic eruption passes or lessens. (Maybe a bit of fertilizer so they can grow too).

Wouldn’t I like my kids to not need services? ABSOLUTELY. However, that’s not reality, that’s not the truth of how things currently are. So, is one hour a week worth giving up the television in the living room and eating a slightly later dinner in order to provide Wes with a service that is helping him, helping him to learn how to recognize emotions in himself, to script what he should do when he’s angry or upset, to help him learn that other people have feelings and emotions just like he does?

And, wouldn’t I like to have my own flat or house? No doubt about it. Seamus in his psychiatry evaluation earlier this week was asked “if you could have 3 wishes, what would they be?” The third wish was typical of an 8 year old (so much so that I forget his answer), the second wish was a money tree “so we can buy lots of stuff,” the first wish – a house.

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I’m trying and I’m doing the best that I can. The best that I can to support my boys on all levels, the best that I can towards becoming more financially sound so we can move into our own space. And the best that I can to take care of myself too. The best that I can.

For parents of children with special needs it’s challenging. It’s challenging to find time to schedule and attend evaluations, schedule and attend appointments, work, be here and available for someone who marches to the beat of a different drum or have the money to pay for someone else to be here in a harmonious way without getting burnt out or exhausted.

To everyone who says “I don’t know how you do it,” or “how do you do it?,” we do it because we have to, because WE CHOOSE TO, because we want to see the people we love succeed and shine as brightly as they possibly can, where they can, however they can. It’s this love that keeps us going, that keeps us moving through even the most challenging of times when we’re knocked down, or left wondering how things are going to work out, or feeling so overwhelmed that we curl up into a ball in bed and quietly cry ourselves to sleep. It’s LOVE that gives us the strength, the perseverance, the tenacity, to do what we do Every. Single. Day. It’s LOVE with which we see the BEAUTIFUL, AMAZING GIFTS in every child. And, it’s love that gets us through those moments.

I invite people, instead of saying to someone “I don’t know how you do it” or “how do you do it?,” to a parent of a child with special needs, or to a cancer patient fighting for their life, etc, that you instead stop for a moment, listen to your heart, and say “You have an amazing capacity to love, to be strong, and to persevere.”

This folks, is why. It is why we

don’t

                                                                     give

up.

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I Am…

I Am…a post inspired by Kana Tyler’s blog. What Wes and Sea said is different than what I had expected. What they said is perfect…

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 Wesley. I Am…

…awesome, awesomer, completely awesome, a weirdo, a video gamer, hilarious, and weird…I am the second in command overlord of chaos, havoc, and idiotness.

Seamus. I Am…

…cool, awesome, funny, weird, fun to play with. That’s it.

Me (Amanda). I Am…

…the usual things we think of when someone says “who are you?” I am a single mom, a daughter, a massage therapist, yoga teacher, Alexander technique trainee, researcher, strong, supportive friend, lover of sock monkeys, goof-ball, self-inquisitor. But these don’t really answer the question “who am I?” Who am I really? Who. Am. I?

I am a soul, a soul who is learning and remembering what it is like to be free, what it is like to let go and feel who I was before I moved away from my Self and started becoming who I felt I needed to be rather than who I was. I am giving myself permission to open myself to what is already there, to open myself to the light, love, freedom, strength, support, and bliss that is already within me. I am giving myself permission to open my Self to others, to bare my soul without feeling that I need to protect it, to simply be.

I am learning to dance with the light within my Self and within others. I am learning to fly. I am a soul who yearns to dance with the divine in nature and with the divine in each other. I am learning to move to the beat of my nature, to my heart. I am turning myself to the radiant sunrise within my Self. I am painting a beautiful tapestry filled with the colors of unlimited potentiality.

I am who I am when I am being who I am as I experience myself being my Self with freedom and ease of being.

I am…

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John O’Donohue asks “Who are you? Who are you really like behind the mask, behind the roll, behind your words? Who are you when you’re alone with yourself? Who are you in the middle of the night when you awaken? And who are you when you come out of the dawn before you step into the conditioned reflexes that keeps most of the days of your life dulled on you? Who are you then?”

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Learning to Breathe

Editor’s note: Yes, it’s been quite some time since I’ve written. The day to day challenges left me “worded out” by the time the boys went to bed and I had a free moment to write. And, those same day to day moments have taught and are teaching me how to breathe.

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Our children can be one of our biggest teachers. Wesley is definitely one of mine…

The day began at 6:30 a.m. It had been 4 wks of excitement that we were going to the Museum of Fine Arts to look at the Greek and Egyptian artifacts.  As most of our days begin, I rolled out of bed to an immediate intense conversation on one of Wesley’s interests/areas of hyperfocus. On this particular day, Wesley’s conversation began with Greek and Egyptian mythology, discussions of what phrases he could write using symbols obtained from a book, quizzing me on the various Gods/deities – what is Isis god of? Who is the god of the underworld? What weapon does Zeus use? Hermes is the god of what? – and so on and so forth. This excitement continued all morning, on the train…

…on the subway…

…at the Museum…

By this time, my listening capabilities and ability to be fully present were tired. But we were just beginning…

I would be educated and quizzed, much as a college student would be by their professor, about places in Egyptian history, tombs, gods’ names and what they do, what various symbols mean. 

And, I came to realize that my 9 1/2 year old son knows far more about Egyptian mythology and history than I ever will. Not only that, but in this situation when he talks about and is around what truly sparks his interest, he shines.

Also, surprising is his knowledge of Greek mythology. Granted, the MoFA didn’t have as many statues of Greek gods as he would have liked, Wesley was far from disappointed.

Finding himself enthralled by the armor early Greeks wore; trying to decipher the small symbols on plates, bowls, and vases ate up much of the time and captivated his interest. The depictions of saders led to a few quirky comments…lacking the understanding of a teenager or an adult, what was a very clear picture to those more “educated,” was “disturbing, that’s just wrong,” or “weird” to Wes.

After a couple of hours, the inevitable “I’m hungry” bubbled out of his very active mouth. So, we headed out. And, the conversations continued. By this time, I wanted, no needed a few quiet moments, just a few to sit quietly, not interact with anyone, and just breathe.

The subway ride to North Station was a pure challenge – Wesley talking about the museum, a jam-packed T with children screaming and bouncing all over the place, the woman standing next to me jostling me over and over again. And, the T going out of service. A blessing!! The perfect opportunity to take my tired and over-sensitive ears and frayed nerves out into the open. We walked the rest of the way to North Station under a quickly clouding sky, space, and a little less conversation. Given the time,  we enjoyed a lovely one-on-one mother and son lunch at an Irish restaurant before catching the train home. The perfect time to sit and take a few moments to relax and breathe.

The ride home was quieter and as we sat there contemplating which would reach home first – the train or the incoming thunderstorm. Grateful for the day, and utterly exhausted, grateful for a few moments to rest.

Those moments of learning how to breathe as I’m bombarded with questions and facts and myths move from a space and time of breathing into a space of being where I can witness Wesley being Wesley, where the walls he has around him, where his social awkwardness and challenges melt away to reveal a beautiful breath of heart.

So, whether it’s Egyptians, Greeks, or monks fighting battles with troglodytes…

Troglodyte

…a naga…

Naga

…or dragons,

Dragon

I thank my lucky stars that something has captivated Wes’ attention that allows him to be free, creative, and expressive. And, I sit back, listen, and breathe.

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When it All Began, Part 2

If you missed Part 1, read it hereWhen it All Began, Part 1“.

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…There I was, in my first semester of study, a mere few weeks into the term and I get the phone call – the kind of call that makes every parent’s heart ache, that makes their heart pound with fear. Only, little did I know that that first phone call would be the first of many. I still to this day, 3 years later, feel that bit of fear whenever the school calls. Waiting. Expecting the worst…preparing myself for what they are going to say…

“Ms. Patti, this is — School calling. Wesley attempted to leave the building today, bolting out the door, yelling that he was going to go home. When the staff chased after him and brought him back into the building, he began physically attacking faculty members (kicking, punching), crying, and screaming, and had to be restrained. Your mother came down to the school to help out as we could not reach you at the time. Wesley has since calmed down and returned to the classroom.”

I remember that first phone call so well. The pain and fear of hearing that my son 1. was so disturbed that he wanted to run home, 2. physically attacked someone, and 3. had to be physically restrained until he “calmed down.” I left school as soon as I had received the phone call, too upset to stay. Telling my professor, in tears that I was barely holding back, that my son needed me and I had to leave.

There were numerous times in kindergarten that this happened. There were times when Wesley was not able to calm himself down, that my mother left work to pick him up, then took him to work with her until I was able to get home (40 min. drive without traffic) and pick him up. I remember the hopeless feeling, knowing that there was something going on with my son and not knowing what, or why. Just knowing that he was hurting, that he was afraid, and in some serious pain, lacking the words and the capability to put words to his emotions in order to express them appropriately.

There was no denial, I’m not one of those parents who turns their heads and says “no, my child doesn’t have a problem;” rather, I’m one of those few parents who says, “my son needs help. This is not normal. What can I do? Who can I see to get help for him?” And, knowing that dropping out of University myself and homeschooling him wasn’t the right option, that that wouldn’t be helping him learn social skills…

The school was no help at that point in time. None. Did he get put on an IEP? Sure. But that’s where the buck stopped. Did I express my concerns to Wes’ pediatrician? You bet. And, a rather lax approach was taken. I wasn’t taken seriously…

Then, we hit a second speed bump. Wesley was being kicked out of the after school program at — School. The Director could not and did not want to handle him. He climbed up the slide instead of sliding down it, tossed wood chips when he became upset, used inappropriate language, and – here’s the last straw that got him kicked out – blew raspberries at the Director.

So here I was, back at University myself, fairly recently divorced, living with my parents, and raising two boys on my own – And, not two “normal” boys, but two boys with special needs…Seamus with his low muscle tone that he had been seeing specialists for and undergoing various tests to rule out some potentially serious disorders, and Wesley with these challenges making themselves quite known – and, wondering now, what on earth was I supposed to do? Who was going to watch Wesley? How was I going to stay in school and finish my degree on top of all of this?

The YMCA took Wesley into their after school program, stating in their handbook that they worked with children with special needs. And, they did the best they could for as long as they could…

So, the kindergarten year was met with a flurry of phone calls, a lot of heart ache and heart break. Tears, so many tears. And anger. I became so angry with Wesley, with the situation – why couldn’t he behave himself? Why couldn’t he express himself using words instead of fists and feet? Why, why, why?

As time went on, the anger decreased. At first, I think I lost the energy to be angry. Then, I realized that my being angry wasn’t helping the situation. And, I also began to realize that no matter how many times and different ways I’d say and show Wes that physically reacting to a situation is not acceptable, he did not understand and still does not really understand. That this situation, this behavior, went far beyond a child who was misbehaving…there was far more going on than the garden variety behavioral problem.

To be continued…

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Good morning!

Editor’s note: It’s important to note here that compared with other families, especially those who have children that are chronically ill or fighting for their life, I have nothing to complain about…my heart goes out to them and their challenges.
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Today, I tell myself it’s a good morning – the sun is shining, birds are singing, the air is warm and pleasant, the boys are getting along, I have a roof over my head, food to eat…right now, it’s not enough.

The weariness of everything got to me today. Yup, I woke up knowing that I have advocates and psychiatrists to call today, appointments to schedule, laundry, work, etc. And the heaviness of the journey got to me. I had a small breakdown…sad, crying. So tired…

Tired because I do this on my own. My ex-husband is minimally involved in the boys’ life. Does he pay his child-support on time? Pick them up every other weekend when he is supposed to and drop them off? Yes. But the buck stops there. It doesn’t matter that counselors and the Director of the Center for Children with Special Needs has told him he needs to be more involved in the therapeutic process. He’s balked at meeting with a couple of the TEAM members so he can learn to be on the same page as the rest of us – citing that work is more important. He nearly refused to split the cost, and is not happy or overly willing to do so, for services for Wesley.

It’s exhausting being the fulcrum from which Wes’ TEAM rotates. It’s exhausting cutting back on what little I have to cut back on to pay for additional services. Let’s face it. If I don’t do it, who will? Who knows Wes like I do? Who cares enough and can provide the same level of care as I do without charging an arm and a leg? Who else would be willing to work a variable schedule to be here with Wes and Sea, knowing that Mom’s presence makes a huge difference in the boys’ well-being and attitude?

And, although I’m grateful that my parents’ took us in when I separated/divorced, it’s time for us to move out, time for our own place.

We’ve been living with my parents for almost 6 years. Six years!

The close quarters, lack of space, and having to put myself back to maintain peace reached one of those hiccups today. I don’t ask for much. I really don’t. But, oh, to have our own place…sigh…

It’s the little things that add up over time. Struggling to find space in the fridge for fruits and veggies, or meals that I prepare for myself. Struggling to find space in the freezer for frozen berries or gluten-free bread. To have space to put our few possessions without feeling cramped. To walk in rooms and not hear the tell-tale “sigh.” To have room to practice yoga (the one thing I do for myself) and be able to reach my arms overhead all the way, to be able to bend over to the side without hitting my head on my bed or bookcase; to not have to wait for these few months of good weather so I can get outside if it’s not thundering or raining and practice in a spacious environment after I put the boys to bed. To be able to sit in the TV/family room with the boys and play games or read or watch a movie with them without having to feel guilty about taking up space and being there.

…so my parents’ don’t have to sacrifice anymore. So I don’t have to feel guilty about their sacrifice – these aren’t their kids. So I don’t have to sit by and see how our being here brings up opportunities for my parents’ own transformation that at times aren’t met with the desire to change, but to remain the same…

Sometimes I wonder, am I asking too much? Is a small house in decent condition with 3 bedrooms, a quiet space for me to practice yoga, lots of natural light, and a small yard in a decent neighborhood with good schools too much to ask? I don’t think it is. That’s when I dream, dream about being one of those contestants on Extreme Makeover: Home Edition.

And yet, part of me doesn’t know that the challenges I face would be worthy of such a lofty gift. Maybe that comes from the tantric part of myself. I don’t know. Because when I’m faced with these challenges and I wipe out, I get back up on the surfboard again and laugh, and actually thank the Universe for having taught me or shown me something that I hadn’t seen before or hadn’t seen from a certain perspective.

When I sit back and look at my situation (the play or dance, nay – pulsation – of prakasha/vimarsha) like someone looking at fish swimming in a tank, or at a tapestry, all I see is a beautiful display of lights and darks, of a lovely scene unfolding one step, one day at a time, of the dance of a woman’s courage, heart, beauty, and freedom expanding one golden thread at a time.

And, I smile – my heart becomes lighter and more easy. I know that the Universe wants to support me, wants me to be free and experience pure bliss…she does. In my meditation, I ask for the Universe’s support in manifesting, and I thank her for all that she has given me, for all that she has shown me.

Sometimes, I have to take a step back from the tapestry to see that and to remind myself that those qualities are already inherent within me. That by letting go and allowing, I have the ability to tap into the freedom already within my Self that I seek on this physical plane. I have the ability to see that these challenges, these daily struggles are but the colors and the depth that add to that tapestry, that they are the stuff from which the thread has become strong, beautiful, and is softening.

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When it All Began, Part 1

Editor’s note: I don’t remember all of what’s happened over the past nine years, but there are moments that will remain with me forever. This is Wesley’s story, and Seamus’, and the trials that I faced, from the heart-breaking challenges to the fun-filled laughter and warm hugs.

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Wes loved throwing rocks on beaches. Loved it more than anything else, until you attempted to redirect him when people were nearby and it wasn’t safe for him to throw rocks. When that happened, Wes broke down – the all out, crying and screaming that defined who he was at times and his level of distress from a seemingly minor redirect.

There were of course, the milestones. Those milestones that every parent waits for their child to reach – first smile, first laugh, first word, first step. Wes reached every one of them on time, and walked early – by the time he was 12 mo. Then, there was the one milestone we were a little bit late reaching – those two word phrases. His pediatrician has taken a very laid-back approach all along. Instead of having Wes immediately evaluated by Early Intervention, he suggested giving it another month or so (I don’t completely remember how long). Sure enough, Wes started speaking two-word phrases right before his doctor hit the button.

I didn’t think too much of it at the time, but now with his verbal delay in pragmatics I wonder just how significant that delay was…

During Wes’ toddler days, there weren’t too many things I was concerned about. Certainly not enough to raise any kind of red flag…red flags were raised with Seamus and his development, but I’ll write about that in a bit.

When Wes started kindergarten, his Dad and I had been divorced for a year or so. I had decided to go back to school and earn my bachelor’s degree in biology. During that time, the world as I knew it, once again fell apart. Or, fell apart to come together in a whole new way.

There I was, in my first semester of study, a mere few weeks into the term and I get the phone call – the kind of call that makes every parent’s heart ache, that makes their heart pound with fear. Only, little did I know that that first phone call would be the first of many. I still to this day, 3 years later, feel that bit of fear whenever the school calls. Waiting. Expecting the worst…preparing myself for what they are going to say…

To be continued…

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Courage

Editor’s note:

Sally Kempton (Swami Durgananda), says the following about courage in her article “Finding Courage” from “Meditation for Life”:

“…the English word courage comes from the French coeur or ‘heart.’ The Sanskrit word for courage is saurya, which has the same root as the Sanskrit word for ‘sun’…courage comes from the very center of being, the heart, the organ that most directly resounds with the pulsation of life.

Like the heart itself, courage is a lotus with many petals, all of them associated with qualities that even the most ironic of us celebrate. Here are a few facets of courage: bravery, strength, steadiness, trust, self-reliance, faith, integrity, love…

…cooked courage, ripe courage, contains discipline, wisdom, and a quality of presence…ripened courage seems to rest on profound trust in something greater than your personal self-interest–trust in the Self, trust in love, trust in the divine, trust in the power of your own awareness, trust in the stability of your own Center…out of that trust, a person with ripe courage can often surrender both the fear of losing and the desire to win, and act for the sake of action, even for the sake of love…

…The grace-based path to inner courage comes from radically opening into love…and from trust in the power of your divine source.

…The more we are in touch with the center and the source beyond it, the more we are able to touch that courage that doesn’t just rise to handle a crisis, but that also allows us to keep getting up in the morning and facing our interior darkness or buried grief, hanging in through the mud-slogging grind of transformative practice, standing up for what is right again and again without bitterness–or at least only a little…

…A text of tantra called the Stanzas on Vibration says in a famous verse that the heart of the universe, the pulsation of divine power, is fully present in moments of terror, intense anger, or absolute impasse, ‘while wondering what to do.’ The secret of discovering that power is to turn inward, toward the center of your fear or confusion, to let go of your thoughts and emotions about the situation, and allow the energy at the heart expand. That’s where superhuman strength comes from. It just takes courage.”

To see the full article, visit 

Finding Courage

Sally Kempton

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I’ve been trying to find a child psychiatrist to work with Wes and am still looking. Mass General — “the place to get help” for someone with Wes’ challenges is not accepting new patients, Children’s Hospital Boston only sees patients on a medication basis…I’m waiting to hear back from our pediatrician to see who is in his arsenal of child psychiatrists that may be able to help. And, this is done with the awareness that I may have to take Wes into town (Boston or Cambridge) for appointments.

Today, I began the search for an advocate. For someone who would be in my ring, on my side when I “go to the mattresses” and change Wes’ IEP to include more services that will better serve him. The first place I visited today left me in tears and in disbelief – $600 retainer fee plus $100/hr, or I could purchase a yearly membership for $25 then pay a $400 or $500 retainer (I don’t remember which amount it was) and $80/hr.

I don’t need a lawyer, nor do I want to pay the equivalent of lawyer’s fees. All I want or need is someone who will fight with me to get Wes additional services – no easy task in a school which prefers to severely downplay his challenges and do what will save them and cost them the least amount of money.

With the disbelief comes an awareness of the imbalances for families of children with special needs – those families who may have only one parent working, while the other takes care of the child(ren), bringing them to specialist appointments, social skills groups, etc. all so they can learn how to function in society; or may have one parent working a full-time regular job while the other parent works a variable schedule at a part-time job; or, in my case one parent who works a variable schedule part-time job in service to others, and in service to her children. Where do these agencies think the money for these services – advocacy, special schools, after school and summer care – is supposed to come from? Is equal opportunity and “no child left behind” to be available and accessible only by the wealthy?

Fortunately, I had three other organizations on my list to contact and try to find an advocate. The second organization was much more helpful, more understanding, and referred me to three people in the area who have considerably more reasonable fees. The next step is to call, meet with them, and determine which is most likely to be a good fit.

What, you may ask, does all of this have to do with courage? Everything.

It takes so much heart/coeur, strength, steadiness, trust, and love to keep going, keep following what I believe in, to overcome impasse after impasse, to dig down deep inside my Self, to trust that all will be alright. There is also a great deal of surrender which also takes sheer courage, surrendering to this path, surrendering and trusting in the Universe, surrendering to the Universe having a different path for Wes than what I, or what any parent, may want.

During those challenging moments, with each exhale and at times with each tear, I release a bit of fear. I release a bit of who I was a moment before. I offer my love and trust. And with each inhale I breathe in who I now am. I receive more love, more trust, and more beauty.

And, I take a moment to offer thanks from my heart: thanks for the courage, love, and light in my life; thanks for those who have walked the path before me; thanks for those walking the path beside me; thanks to everyone striving to make a difference in this world, to everyone living their own Truth; thanks to family; thanks to friends whom each in their own way offer their coeur, their heart, love, support, and light – and I feel full/connected. These seemingly daunting tasks become part of the tools, part of the process to help me step more fully into who I am. For that, for everything, I am grateful. And, I thank you.

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