The Foundation - Building Blocks of the Future

I get asked a lot "how do you do it?". I always assume they are addressing my having 3 boys, and I say that "I am very lucky to have been able to leave my full time job so that I could focus my efforts on raising my 3 boys". A few days ago though, I was asked the same question, but just felt the context of the question was different. They were asking, indirectly "how do you keep your sanity while managing your child who currently is dropping to the floor while simultaneously trying to run away, with a scream so high pitched the neighborhood dogs think they are being summoned to a party". And that's when I smiled, counted to ten, picked my boy up, told him "no" again, and said "with patience and perseverance".

The thing is, having a child with special needs is more rewarding than it is difficult. There are times when we think that we won't get through a certain phase (Potty Training for instance), or when we feel in our hearts how much harder raising C has been in comparison to the other 2, BUT... the joys that child has brought our family, the humor, and humility he shows us everyday, the life lessons he has taught us, are more valuable than any number of life experiences previous to having him.

What does the Future Hold? 

 

I always knew I wanted to be a mom. I wanted to be a great mom. I wanted to be the house that all the kids in the neighborhood had to come to. I wanted to be the confidant, the friend, the stern voice, when needed. I knew my destiny was motherhood. I have said so many times before, that "the diagnosis" was life changing. We had to go through the stages of grief, to realize that it wasn't just C's future that we no longer had a clear vision of, but our future as well. I think the hardest part has been long term planning, taking each day as it comes. I am a planner, and not knowing what life will look like in 15 years has been frustrating.

The thing is, none of us really know what our future holds. We have all asked, "what does that mean for my child's future?", but we can't really determine any of our children's future. We lay the foundation, but ultimately our children are the one's that pave the path to their own destiny. I always envisioned A as an engineer or architect. He can build intricate and extravagant creations from Lego's, he has always had the ability to do so. He, however, has always expressed interest in acting, directing. From the time he was a toddler, he would set his toys up on stage, and direct us on how to act, what to say. We thought it was just a phase... really, what 2 year old understands what actors do, and have interest in that field? Well he persisted, and despite my dreams of MIT, he has paved his own way, and wants to pursue acting. After 10 years of interest, it is our responsibility to help him go after his dream.

When we get "the diagnosis", we grieve the "what could have been", then we try to reinvent, "what will be". We focus our efforts on fostering our children's abilities, how to ensure a fulfilled life, while still balancing our personal dreams and goals. It repaves our future, and lays a new foundation for our way of life.

BUT... in those moments of reinvention, come moments of triumph, hope, light, laughter. There will be many bends in the road. There will be times where we aren't strong enough to go on our own. In those times, we will rely on our family, our friends, our own support network to help us build and rebuild our foundation and path. And in the meantime, we will continue to take each challenge in stride, we will cherish each of moments of triumph, no matter how great or small.

Carly's Voice - A True Advocate for Autism Awareness

A must read for those trying to better understand Autism

In just 3 days I read Carly's Voice, Breaking Through Autism. I had prepared this wonderful piece introducing you to Sensory Integration, and C's experience with SI and OT, but after reading this book, I have to reconsider what I wrote.

Written primarily by Arthur Fleishmann, this book honestly and clearly paints the picture of a family raising a child with an Autism Spectrum Disorder. I laughed, I cried, I celebrated, and I marveled at this family's perseverance, but most importantly, I marveled at Carly's perseverance, at her will to want more, and her ability to use her voice, even when her traditional  voice failed her.

As I read, I found myself replacing Arthur and Tammy's anecdotes of daily life, of internal struggle, guilt, and happiness with our own stories of daily life. C rarely sleeps through the night. There was a period of time where we woke with him several times in the darkness of night, cleaning the havoc he created in his bedroom. He would tear his bed apart, throw all of the clothes out of the dresser, all of the toys out of the toy box and squeal so loudly, there was no choice but to wake. He was a midnight terror. We hadn't slept in years and we began to resent it, resent the witching hour, resent each other for not getting up first. After a consult with a Behavioral Psychologist, we stripped his room of just about everything personal. I joke that it looks more like a closet than a bedroom. It works. " 'Carly, get back in bed', I told her, a bit roughly. Although she complied, I knew this was the beginning of the day, not the end of a momentary disruption of the night." Arthur Fleishmann

Though Carly is non-verbal, her Autism symptoms so greatly resemble much of C's behavior (just a bit more extreme), I have found myself questioning everything I have read, everything I was told by doctors. Verbal Stim, or "Audio Filtering" as Carly describes it. Stimming behavior or OCD? Self Injurious behavior or a tactic to stop one's self from a worse behavior?

I have spent the last year chastising myself for not allowing C to be more independent, challenge him more in the area of self-help, push his educational limitations. It is frustrating, for him, for me, for our family. I find my patience wearing thin, never with C, but my poor, older boys definitely bear the brunt of my depleted patience. Is C being stubborn, is Autism creating a barrier, should I push, is it too much, how much is really too much?

After reading this book, specifically the last chapter, where Carly has the ability to really tell what Autism feels like to her, how aware she really is, her ability to persuade, all from her perspective, I feel like I have been given the key to the chest of hope. I know that C is intelligent, more so than many of us give him credit for. Does he play me for a fool, like Carly, is he able to manipulate ? Manipulation requires a multitude of high executive functioning abilities. I think I am not giving him credit for the little man that he really is. When he refuses to comply with a request, is he really just being defiant? Is Autism blocking his ability to filter the request into meaningful (to him) words?

Very often my husband and I say "if we could just help his brain figure out how to get from point A to point B, without interference, on the path of least resistance, maybe it would all just... click. " 'I feel like there's a button in her brain we just need to switch on,' Tammy said. But that button would remain out of sight, out of reach...it was time to stop asking why, and start asking now what?" And how often do I remind myself that the "why" won't help solve the immediate need of "now". That in order to understand the greater picture, I have to focus on what works now, and how that can help us in the future.

This book has resonated with me. I found myself dreaming of conversations I would have with Carly, if given the opportunity. I want to know how to best help my child, but I want to know from his perspective. I can see the questioning look in his eyes, when he tries to tell us something that we simply cannot comprehend, and rather than disassemble the pieces of the puzzle, mostly in an effort to be efficient, we just smile and nod. How frustrating for him to know that we just don't get it, and be unable to figure out how to speak to us, in our world, when he comprehends on a greater platform what is happening in his world. How frustrating for us, to want to help, and feel so hopeless in the endeavor.

It breaks my heart that Carly expresses the need to fit in, the want to "behave normally", and being in a body that just won't cooperate with those desires. The inability to be able to communicate in a traditional way gave the appearance that she cognitively was incapable of taking in and processing information in a useful way. Despite the doctor and psychologists low expectations, Tammy and Arthur fought, for every opportunity, every hope, every dream that they had for their daughter, and look at her now. A true self - advocate, speaking for those who have been unable to release their "inner voice".

On the day when we are to "Light it up Blue", to show our support and raise awareness for Autism, I find myself taking my own introspective look at how I advocate for my son's needs, how I educate those around me, and how I do my part in raising awareness. I have a new hero, and her name is Carly Fleishmann. I have a new perspective on life with Autism, and I have a new resolve to ensure that I show my deep respect for C's abilities and achievements, that I continue to embrace his independence and that I take each day in stride. I know how hard he is trying, just by the strides he has made over the last year. I, like Tammy and Arthur will continue to fight for what C needs, and I will ensure that his "inner voice" is heard.


For more exerpts from Carly's Voice:
Carly's Voice, Breaking Through Autism

For more information on Carly visit her You Tube Page:
Carly Fleishmann's You Tube Channel

Like Carly on Facebook:
Carly's Facebook Page

A Retrospective View Requires a Great Big Thank You

 The strongest of all warriors are these two -- Time and Patience, Leo Tolstoy War and Peace

Two years ago, almost to the day we received our diagnosis. As many of you know, every detail of that day are engrained permanently in my mind. I can still recall each of my senses, make them tangible, as if I were reliving that moment. I remember the feeling of the sweat trickling down my back as the doctor explained what Autism is and listed the various specialists I should call. I remember A and O sitting in the chairs next to the door trying hard to be patient as I tried to hear what I was being told, wishing that somehow the information could be absorbed via osmosis. I recall the smell of the room, that almost sweet, sickly sweet smell that doctor's offices always have.

How far we have come in those 2 years. It seems like an eternity ago, yet still close enough to know why we have chosen to do what we are doing. We have made sacrifices, on behalf of our entire family, hoping and praying that in the end the sacrifices will be outweighed by the lives we touch, by the depth of love, compassion and understanding we thrive on within our family unit. We certainly will never become rich, by choosing this path. We may not be able to go out on date night dinners with our friends, may not be able to take an impromptu vacation, or buy the trendiest line of clothing, but we hope to look back on all of this, from the rocking chairs on our front porch, and know in our hearts that our decision was the best for our family.

We hope to continue to reach families who have felt our loneliness,  who have felt the despair, who have heard earth shattering news from a doctor, who regardless of the diagnosis, want someone who understands on a personal level, the range of emotions they feel. We hope to be able to expand to neighboring communities and provide support to any and all who want to be included. We hope to collaborate with those who have filled their hearts with a similar mission.

My friends, this path we walk down is long, and hard. We are in it for life. Whether you have a child, a relative, a student, a friend, who is given any diagnosis, it is something that you live with, body and soul. How we move forward, how we receive the information we are given, will help us choose from the many paths laid before us. There is no need to walk down any path alone. Whether you become a part of our community for a brief period of time, or whether you become part of our legacy, you will always be a part of our family.

There is a light at the end of the tunnel. With each new day, with each new experience, we are touched by someone who makes a difference. Some days are harder than others. Some days we question the path we have chosen, and other days we see the light turn on, and suddenly we are given clarity. Even if it is just a brief moment in time, those moments are what we need to hold on to. Those moments provide the momentum to continue pushing forward, pursuing treatments, seeking answers, and providing unconditional love to those in our life who so desperately need it.

We see you, we hear you, we feel your presence. We know that our path may be the longest and the one with the most bumps, but in the end those bumps will have given us the endurance to continue our mission.

Thank you for your continued support, for your kind words, for sharing our story. Slowly we are growing, and we know that great things are on the horizon.

Instinct

A Mother's instinct is absolute, pure even. Somehow you just know when your child is stirring in the middle of the night, even before a sound comes out of the monitor. You know when your child is hurt, emotionally or physically before they even say a word. You have the amazing ability to distinguish one child's "mommy" voice from another.

C was born in the summer of 2008. It was completely uneventful. He was a scheduled C-section, because boy do our boys come out big. Unlike most birth stories, we just walked into the hospital and a few hours later we had a baby. No labor, no pushing, just joy.

C was a quiet baby. After 2 children who didn't sleep through the night (we still have issues with that), I was looking forward to a "good" baby. C even slept for 8 hours the second night in the hospital. He never cried, he just made an "ahhhhhhhh" sound, so softly you could barely hear him. Strange, I thought. All babies cry, don't they? But when I asked, I was advised to just be happy that I didn't have a screamer. And they were right, I had 2 other LOUD children, so having a quiet baby would be a nice change of pace.

Time went on, and C did everything at a later age than his brothers. Unlike our middle son, he had no interest in keeping up with the other kids. He was content to watch. He crawled at 9 months, walked at 16 months, and had a hand full of words by 2. When I confronted the doctors with my concerns, , they just ensured me that he was the product of "last baby syndrome". All of his milestones fell within the normal range. He was simply taking advantage of everyone doing everything for him.

We decided at 2 that it was time for baby boot camp. No more babying, this kid needed to talk, needed to get potty trained, needed to start engaging in activity with his brothers. For a full year we tried, unsuccessfully, and the longer we tried, the more "instinct" was whispering sweet nothings in my ear. "This child is not developing properly", "He should be talking by now", "Look at that 2 1/2 year old, he is having conversations, and can play games with the other kids".

I started to turn to friends with children, started to tell everyone I met that C was "special", slow, and that maybe there was something wrong. How should they have responded? "Your right, your kid has issues"? Of course not, they laughed, kidded with me, and assured me that each child develops at a different pace, and eventually he would catch up. All but one, a friend who was always honest. "Take him to the doctor, push for answers, if you think something is wrong, do something about it". She was right, but I was scared. I procrastinated. I wanted so desperately for someone to agree that C wasn't on the right developmental track, but was scared for what that would mean.

When I was in college, I worked at the YMCA. I will always, always remember my time there fondly. That one job taught me more about compassion, patience, and perseverance, than any other. While working there, we had 2 children enrolled in our after school program. We knew that they were developmentally behind,  but their parents' seemed to refuse our suggestion to have them evaluated for learning disabilities. Those poor children struggled to make friends, struggled to learn, struggled with what came naturally to other kids in their age group. If I ignored my instinct, would C become that child? Worse, would I become that parent?

I felt an overwhelming need to get answers, now. Little did I know that getting answers now would take months of testing, blood work, hearing evaluations, eye examinations, specialists, doctors... My poor child has anxiety just walking into the waiting room of a doctor's office now. Even when the appointment is not for him, he cries, runs to the door, and yells "good-bye, good-bye", in his sweet sing song voice. Who knew just how hard verifying a diagnosis would be, and if it is that hard to confirm what a doctor has already diagnosed, what are we in for next?

As parents we are our children's best advocate. I have been told this a million times by a million professionals. We can't live in fear of the unknown. The earlier a child is diagnosed, whether with Autism, ADHD, ED, ID, or any other syndrome, the better chance we have as parents to seek the appropriate therapies, treatments, plans that will help our children achieve their ultimate success. 

It is so hard to acknowledge imperfections in our children, whom in our eyes are perfect. With that said, seeking answers sooner rather than later, and having the courage to face your fears, will allow for more opportunities to better your child.