Friday, October 8, 2010
Written August 2010
I will spare you the sappy love story between me and my husband, and how our two sons (ages 4.5 and 2.5) are the light of our lives. Bla bla bla. The important thing to know is that I have always dreamed of being the perfect mother with perfect children. In reality, perfection doesn’t exist.... in fact, it can be a dangerous concept.
That realization has helped me come to my senses.
In retrospect, my oldest son showed signs of sensory integration problems from the beginning. There was a lot of crying, sleep trouble, noise sensitivity, and bouncing. In his first sonogram picture he looks mid-jog.
At first, I just assumed all babies were like this. When I heard other parents talk about very different experiences with their infants, I started wondering what I was doing wrong. I had a gnawing feeling that something was off.
A TURNING POINT
Fast forward two years. Big brother welcomes little brother into his life with the usual mix of delight and irritation. It was a joyful time in many ways, but it was also when the darkness began to descend. It was a turning point in two respects.
First, the contrast between the two boys made it harder to brush these anomalies aside as mere “personality quirks”. Normal household sounds like the vacuum and the blender left our infant completely unaffected, while our toddler was in a heap of despair.
Second, the quirks seemed to amplify with age. They do call it the “terrible twos” for a reason, but it just seemed a bit much.
Our days went something like this.... the usual morning meltdown about coffee and Ovaltine (don’t ask), wild jumping, running, crashing into furniture, heart-stopping screeches, loud singing, and an assortment of meltdowns scattered here and there. The evening was topped off by a miserable experience called “tubby time”. Haircuts, nail clippings, and teeth brushings were train wrecks. Eating out was usually a disaster. Potty training took nine months. Anything that even looked like it might make a loud noise was a potential land mine. Plus, he was still sucking his fingers, drooling, and chewing everything in sight.
The impulsive and mischievous behavior was the most worrisome. No pile of folded laundry was left standing. No bottle of lotion was left unsplattered. No opportunity was missed to knock over his infant brother. You could be sure that if some loose article was left in his reach it would either be dumped out, knocked over, flung about wildly, thrown across the room, or put in the toilet.
At the same time he was exhibiting some amazing strengths. He was (and still is) extremely joyful, loving, funny, and social. He was very interested in the world around him and retained information with astounding ease. He had an exceptional aptitude for puzzles. His verbal skills stood out the most, though. He was singing the alphabet song around 18 months. He spoke articulately in complete sentences before he was two and started reading words not long after that. He was reciting fairly long story books and songs by memory, and building all kinds of words with his foam letters (one of his favorite toys). I was at once impressed and unsettled by all of these strengths. Was his affinity for letters bordering on obsession? Were these “splinter skills”?
It was clear to me that something was off, but what exactly was it? And how was I supposed to handle it? I was seriously floundering.
THE DEVELOPMENTAL SPECIALISTS
I scoured the internet for answers, but nothing seemed to fit. I scared myself into thinking he had all kinds of disorders. Although the pediatrician didn’t see any major cause for concern, she pointed us to a developmental specialist.
The prospect of getting some kind of “diagnosis” scared me to death. Even more frightening was the possibility that my son would be capriciously labeled with the disorder-of-the day, and it would follow him the rest of his life.
The experience with the developmental specialists was nothing like what I envisioned, but it was frightening all the same.
The doctors were very thorough and compassionate. They used an arsenal of instruments to gauge my son’s development. I will never forget the day they presented us with their detailed analysis. The tests indicated normal development (phew!). Perhaps he had some “sensory issues” as well as low muscle tone and deficits in his fine motor skills. However, the real issue was that I was worrying too much and my expectations were too high.
My mind came to a grinding halt. Basically, all I heard was, “you’re a bad mother”. I was embarrassed, confused, and distraught. It wasn’t until several months later that I felt angry as well.
Did they not understand what I was dealing with everyday? And since when is it bad to have high expectations? And see a doctor when you think there might be something wrong?
I didn’t know what to think. I was extremely relieved that he didn’t have a serious problem, but completely daunted by the prospect of getting through each day of my increasingly-frustrating life with no answers, tools, or guidance of any kind. Oh, and by the way, I was a doctor-confirmed bad mother.
If only I had had been able get over myself and HEAR the words “sensory issues” I could have started this learning process a lot sooner. Unfortunately, it just didn’t sink in. I was too busy having a pity party, and I continued to flounder.
The doctors recommended preschool, so I enrolled him immediately. They also suggested possibly getting an evaluation by an occupational therapist. I dragged my feet on this one. The doctors were ho-hum about it. Dealing with the insurance company was a major headache. The noise sensitivity and meltdowns were fading. The impulsive and mischievous behavior was really our biggest concern, but that didn’t seem like something an occupational therapist would address. It seemed pointless.
Even so, it was all I had besides preschool, so I eventually got the evaluation scheduled. All the while I never realized how occupational therapy and learning more about sensory issues might vastly improve our lives.
The first day of school was a month shy of his fourth birthday. It was met with a great deal of fanfare. Our entire family was excited and hopeful that this could be a turning point. The school was wonderful, and overall his five month stint there was mostly full of lovely, positive experiences. However, in some respects these school days were some of the darkest I had ever experienced as a mother.
As difficult and exhausting as it was to deal with my son 24/7, sending him off to school was much worse. Spending the entire school day worrying about what might be going on. Getting the behavior report from the teacher, no matter how understanding and sympathetic she might deliver it. Apologizing to another parent for something my child has done to her child.
All of these things sent me over the edge. As a former elementary school teacher, I never dreamed my child would be a behavior problem at school. This was cognitive dissonance to an extreme degree.
It was clear that preschool was not the panacea we hoped it would be. I was at an all-time low. This is the point the anger toward the developmental specialists started to bubble up. I had left their office wondering if these problems were a figment of my imagination. Yet, his preschool teachers were having some of the same experiences. Things just weren’t adding up.
THE SUN CAME OUT
Then one day the teacher said something that jolted me to the core..... “have you ever thought about sensory issues?” It was in that moment that all the scattered pieces came together, light bulbs went off, and I finally started to GET IT.
The occupational therapy evaluation that seemed perfunctory suddenly took on a new importance. While I anxiously awaited the day of the evaluation, I searched the internet - this time in a more focused and productive way. I came across Hartley’s Life with 3 Boys and a few other other blogs about SPD. The light started to shine into my dark world.
In the three months since that day our lives have been transformed. We now meet with a fantastic occupational therapist two times a week whom my son absolutely adores. He will do anything if she asks him to. I now have a sensory diet for my son and I know how to use it. Sometimes I’m in awe of the major changes that have taken place, especially with fine motor skills. He went from not wanting to hold any sort of writing utensil to writing almost every letter of the alphabet. He now has a new way to express his love of letters and words!
His behavior has also has improved a great deal. I can now leave a pile of folded laundry on the bed without fear of getting it knocked down! Amazing!
There are still moments that are as frustrating and difficult as ever. The big difference is my level of understanding. I’m learning how to prevent problems from happening in the first place. I also have more compassion for my son and a new-found empathy for what it must be like to walk in his shoes.
Okay, we’re starting to get a handle on all this sensory stuff. So what does the future hold? I have the same sort of daydreams Steve Martin’s character had in the movie Parenthood. If you're not familiar with the movie, here's a clip:
Just like the movie, one minute, I picture my son giving his valedictorian speech, thanking his wonderful parents for helping him through the rough patch he had as a child. The next minute he's in a bell tower with a riffle. I bet all parents probably have these thoughts - SPD or not.
The optimistic side of me sees the incredible progress that has been made over the past few months and expects my son will continue to mature and develop. The family will learn to integrate these strategies naturally into our lives to the point that we won’t need to think about it anymore.
The pessimistic side of me worries that all of this - the occupational therapy, the sensory diet at home, all of it - is just barely enough to keep the problems at bay. If we stop (even for just one minute) everything will all fall apart. Even worse, I worry that as my son ages, his issues will amplify and intensify to the point that we can’t keep up. This ultimately brings me back to the bell tower scenario.
One thing that really scares me is public school and how it could very well send my son marching up the stairs of that bell tower. Preschool gave me a glimpse into what life at public school would be like for my son. We were actually quite fortunate that the teachers and the director of the school were well-informed, compassionate, and handled the issues in a very positive and proactive way. I imagine this is as good as it gets. Being a former public school teacher myself, I know that it would likely be a lot worse. The school system as it exists today creates an uphill battle for any teacher, no matter how wonderful he or she might be.
So.... homeschooling. It has always been something we’ve considered - even before my children were actually born. My husband and I are both teachers. We would find a great deal of joy in educating our own children. We’ve kept an open mind and have carefully weighed all the pros and cons. Our first son is due to start Kindergarden one short year from now. No more contemplation. Time to make a final decision.
Decisiveness has never been my strong suit, but all that has unfolded over the past few months has made the answer seem crystal clear.... we are going to homeschool.
Of course we will always stay open to other possibilities, but for now I can’t imagine that any classroom teacher will be able to give Jack the sensory input he needs to stay even throughout a long school day. I can barely manage to do it myself at home with only two children! So why set us all up for failure when we don’t have to?
RAISING SENSORY SMART KIDS THE MONTESSORI WAY
There have been many times over the past few months when I had that wonderful feeling of living life on an optimum trajectory - ideas spring forth, paths emerge, and plans fall into place. This has been particularly true in the area of homeschool planning. Once we made the final decision in favor of homeschooling, a wonderful opportunity fell squarely into my lap. A fellow homeschooler recommended a great (and inexpensive) online training program that will give me the tools and guidance I need to educate my children using Montessori methods.
I have been drawn to the educational philosophies of Maria Montessori for years. I’ve been reading and experimenting for months, but I hit a brick wall. I needed a deeper understanding and a better plan.
This training program fits the bill perfectly. If it had been presented to me any sooner, I might have failed to recognize one of the most important reasons why Montessori is such a good fit for us. You guessed it.... Montessori places a strong emphasis on the senses!
The serendipity of it all is simply delicious.
SO, AM I STILL ANGRY WITH THE DEVELOPMENTAL SPECIALISTS?
Most certainly not. In hindsight, I think they gave me some solid advice. Unfortunately, good advice from well meaning individuals is not always easy to hear, and even harder to absorb. Especially when emotions are running high.
Since our first meeting nearly a year ago, I’ve reflected on what they said to me many times. As the months go by, the meaning I extract from their words morphs.
For example, I initially heard them say that I needed to lower my expectations. This is nothing short of blasphemy to a teacher. Now that I have a better understanding of why my children act the way they do, I’m able to have a more realistic expectations. It’s not a matter of letting them run around like wild monkeys. It’s more about working with them on their level of ability instead of just being frustrated when they don’t act like I think they should.
This, like so many of the things they said to me that day, just didn’t make sense to me at the time. Although I left their office feeling empty handed, there was actually a bounty of wisdom there that just took some time to reveal itself to me. I’ve tried to apply this wisdom the best way I know how. I think I’ve made great strides in terms of allowing my children to be be independent, something that flows naturally from the Montessori philosophies.
I’ve also tried to be more conscious of my anxiety level and focus more on my children’s strengths and abilities. I’ve had some HUGE revelations about what it means to accept and love my children as whole people, even when they might not behave the way I think they should. I’m sure these understandings will help me as they continue to grow and become more independent beings in this world.
One comment that has particularly stuck in my mind was, “yes, he has some unusual things going on, but isn’t that wonderful?” I’ve always thought I had a fairly progressive attitude about “special needs” children. That is until it was in relation to my child. Now the term “special needs” has a whole new connotation for me, and I see now that we all have special needs. My job as a parent is to understand what those needs are and fill them.
Something that still puzzles me about this experience is the way the doctors almost scolded me for being concerned about my child. I wonder if they thought I had Munchausen by Proxy? And while they did give me a few clues about sensory issues, why didn’t they put more emphasis on this? Perhaps recommend a book or something? Were they afraid I would be too quick to identify with the label?
I’ve tried to examine myself, and I truly do not believe I am seeking out something to be wrong with my child. I don’t wish for him to have some sort of disorder. I’m not looking for an excuse for his behavior. What I wanted then, and still want today, is a better understanding of my children so I can be a good parent to them.
Furthermore, I don’t think I’m making a mountain out of a molehill. I see very clearly that this is just a molehill. In the grand scheme of things, having sensory issues is not that big of a deal. I understand that. It’s just helpful to have the right tools for dealing with it.
Perhaps the most important lesson I took from my experience with the developmental specialists is that no one doctor (or person) has all the answers. Just like teachers, doctors are facilitators, or guides, that give me bits of information and insight that I can take (or not take) along with me on my journey. I don’t think the doctors fully understood what was going on in our life or how to fix our problems - how could they? And I should have never expected they would!
LABELS & SEMANTICS
The truth is that I am very cautious to put ANY kind of label on my son. One or both of my sons very well might meet the criteria for SPD - I honestly don’t know. But neither of them have been officially diagnosed. The pediatrician sees no need to apply such a label and I agree.
Either way, I personally resist the “disorder” aspect of SPD. For me, in this moment, “sensory processing” will remain lower case, sans “disorder”. Instead of thinking in terms of something being broken, I’d rather use all that I’ve learned about sensory processing in a constructive way to to help me know and love my sons. I want to avoid getting so swept up in a label that I loose sight of my sons as individuals. Even worse, I don’t want end up using the label as an excuse for bad behavior or bad parenting.
Through all of these experiences, I’ve developed a heightened awareness of the role the senses play in the normal development of all children. I have a new point of view when I browse through countless products in the baby section that claim to aid with sensory development.
Whether or not they actually live up to these claims is beside the point. What’s important is that I assumed all this sort of development just happened on its own. For many children, it very well might. However, if there’s something I can do to help my children along with this area of their development, why shouldn’t I? I never hesitated to help them learn how to identify shapes, sit up on their own, and take their first steps. I would have been well served - as a parent and a teacher - to have picked up on the importance of senses a lot sooner.
I feel compelled to tell all my friends who are parents or teachers about what I’ve been learning. I think we all would be better caretakers of our children if we understood what sensory processing was all about!
Case in point is our “Number 2”, as we so affectionally call our youngest son. I can’t imagine there’s anything about him that would have caused us to meet with a developmental specialist. He seems to be developing in a more typical way than his brother. Even so, it’s clear to me that he has a set of sensory issues all his own.
He is generally very relaxed and subdued (to an extreme degree at times), but he has bursts of wildness and he can be very willful and intense. Although is he is the sweetest, cuddliest child you’ll ever meet, he can be quite aggressive (often in a loving way, if that makes any sense). When he was an infant, my shoulders were covered in bruises from all his biting. He’s gone through several hitting and head-butting phases, and he will rub your ear right off your head! Sometimes he seems freakishly strong. We call him Bam Bam. He dislikes being dirty, but he rarely melts down about it. He sucks his fingers, just like his brother.
Are these sensory integration problems? It’s hard to say. I’m pretty sure these issues aren’t causing any great impediment in his life at this point, though. In any case, all the things that I have learned about sensory processing have helped me a great deal as a parent to this child. Many of the therapies I use with Number 1 are proving to be just as effective for Number 2.
WHY DID IT TAKE ME SO LONG TO GET HERE?
Now that I finally have a clue about sensory processing, I can’t help but wonder.... why did it take me so long to get to this point? Looking back, there seemed to be so many missed opportunities to learn about sensory integration and therapies that would have helped my son.
I really like my pediatrician, but I’m puzzled that she never mentioned SPD. Is it simply an awareness issue, or is SPD not considered “legitimate” by the medical community. That’s certainly been the implication in a number of documents I’ve encountered in the insurance industry.
It also seems so strange that I never honed in on SPD in all my countless internet searches about my son’s symptoms. I honestly don’t recall ever coming across SPD until I specifically looked it up by name. The only explanation that comes to mind is that SPD is so entwined with autism that I didn’t recognize it as a standalone issue.
Further confounding the problem was that I was dealing with a myriad of issues that seemed unrelated to me - noise sensitivity, meltdowns, behavior problems. I was off chasing rabbits, looking for answers in all the wrong places.
One thing I know for sure is that learning about sensory processing has helped my family tremendously. If the therapies we are using are considered “experimental” then further research is needed. If doctors and parents are not aware of the term “sensory processing” and how it impacts people’s lives, then they need to learn. I’m certainly going to do my part to spread the word. My philosophy is that everyone could stand to benefit from learning about sensory processing, SPD or not!