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.

"A Journey of a Thousand Miles Begins with a Single Step" - Confucius

"The Team recommends that C remain in an inclusive setting for the upcoming school year."

While to many these words have little meaning, for our family it is a testament to how far we have come. Just last year, there was question as to whether or not C could thrive in an inclusive setting. Data was recorded, showing that his attention span and need for prompting and redirection was likely more than could be handled in a classroom with "typical" peers.

Hearing that my child may not have the necessary tools to be successful in an inclusive classroom is heart wrenching. It is one more notch on the belt indicating that my child is "different". It leaves me wondering what that means for the future. It feels as if I am conceding to the diagnosis, deflating the hope I mustered that we could work through the diagnosis, and pave the path to an independent life. Taking away the typical classroom setting also felt like we were beginning the first steps of training our son for a life of dependance, and it seemed like it was just too soon to throw in the towel.

We questioned the placement, we requested a visit to the Self-Contained classroom, we called upon everyone we had met along our journey and asked for advice, guidance, and the strength to call into question a decision we had no part in making. We made our case, and we were able to move C to his home school, where a Self-Contained placement was not an option. We began a journey where in our hearts we knew our child would succeed, but felt the ever present nag of going against the judgement of our team. We prayed that our instinct was more insightful than our teams' decades of experience.

And yesterday, our instinct proved to be not only true, but also a reliable guide as we continue our journey. C was able to master all of his goals from his IEP, he was able to do so in a typical classroom setting, with typical peers. He has a schedule full of transitions, many different teachers, and he succeeded with grace and dignity.

When I think about our journey thus far, I am filled with such pride, for my boy who we were told was on the severe end of the spectrum. A boy who fought to unveil his inner personality, and trust those around him to experience the joyful, caring, charismatic, social, and intelligent boy that he is.  He showed that data is just data, and if given the proper tools, in a setting that is conducive and considerate of his needs, he can thrive, and grow, and prosper. He can begin to pave his way to his life of success and independence.

Thinking over the words "The Team recommends that C remain in an inclusive setting for the upcoming school year", takes my breath away. It is the equivalent of hope, of success, of equality. It means that C is up for the challenge. That he is not willing to be a victim of a diagnosis, that he is willing and ready to work for acceptance and equality. It means that we can trust that we have a team that is also ready to challenge themselves and C to work towards our shared goal of equality and independence, while also maximizing his educational experience. The path to those goals may be different from the rest, but we know in our hearts that it is possible.

An inclusive classroom is not the best learning environment for all children. There are children who require the attention, small classroom size, and additional tools, accommodations and services that a Self-Contained classroom provide. While we fought for an inclusive setting for C, we did so with careful consideration, calculation, and guidance from professionals. This educational setting works now for C, and unfortunately we cannot predict whether it will continue to be C's LRE (Least Restrictive Environment). I strongly feel, however, that all children should first have access to an inclusive educational setting, as we cannot rightfully determine a child's best educational setting, without giving a child the opportunity to learn and socialize with "typical" peers. With the recommendation for C to be placed in the Self-Contained classroom, that the Team initially made, we felt that C was not given the fair and legal opportunity to try to learn alongside his "typical" peers. For that reason, we questioned his placement. Again, we knew in our hearts, and our instinct screamed at us, to continue to question the recommendation. But as we have learned along the way, each child is different, and their abilities shine through in their own unique way and in their own unique environment. We have an IEP, which by definition, is an Individualized Education Plan. No two children learn in the same way, and this needs to be considered when drafting your IEP.
I would also like to take this opportunity to thank our amazing IEP Team. While we know there will come a time where we will disagree, we have created a relationship of respect and I am so thankful for the hard work, dedication, and out of the box planning and brainstorming sessions. Each and every member of our Team holds a special place in our hearts, and we are so thankful to each of you.

Slow and Steady Wins the Race

Meaning Beyond the Words

"School is broken"
"Night night is broken"
"Dinner is broken"
"The pull up is broken"
"The potty is broken"

There is a pattern here. When we don't want to do something, it simply becomes broken, and problem solved, at least in the mind of the 5 year old who struggles to find the words to simply say, "Let me finish what I am doing first".

We are slowly learning how our boy communicates, and trying our best to keep him on the schedule that he sometimes doesn't want to follow. We are always a walking contradiction, to the diagnosis - C wants a schedule, but on his terms; to the mantra that we are the parents and we are in charge - though C dictates much of our lives; to the fear - we hate living with it, but without it we become complacent.

For the past two years, C's progress has been noticeable and yet slow and steady. He seemed to tackle his goals one step at a time. This year he is soaring - Killing our expectations, smashing his goals, and again reminding us that he has no boundaries. He is the keeper of his accomplishments, and he will unlock those doors when he is ready... and we better be ready for that door to be unlocked, because before we know it, he will be counting to 100, speaking in 2 and 3 sentence paragraphs, telling us - verbally - his wants, his needs, and lately, even his feelings ("I am happy", "That makes me sad", and my personal favorite "Frustrated... I am not FRUSTRATED!")

And then there are moments where his words simply fail him, his verbal communication synapses aren't firing, and all the progress we were just rejoicing has retreated. We have tantrums, head banging, stuttering, and tears, lots of tears. We rely on our past , to help us navigate the now. We return to trying to hint at words that we think he is looking for, we provide options, we pray that in some way the missing words will suddenly flow freely and meaningfully. Sometimes it helps, we hit the nail on the head, we have solved the problem quickly and efficiently. We high five ourselves for knowing our child so thoroughly, that words aren't needed to be able to effectively communicate. And then, there are those times, when providing the words is a bigger frustration, if we had just waited a few more seconds, the words would have come, he would have been able to tell us on his own, in his way, and we retreat, with the white flag waving, defeated. C feels defeated too, he wanted to tell us, on his own. We were just too impatient to wait. We didn't have faith that he could do it on his own, and it deflates his confidence. It is apparent in his eyes. Those sweet eyes tell it all.

My favorite things to read, when perusing online, are the real stories of mom's like me, navigating the many twists and turns this diagnosis can take. The mom's who are real, the one's who tell it like it is, and aren't afraid to be optimistic, even when it is rejoicing the seemingly small accomplishment. Let's face it, we have to celebrate with equality, the smallest accomplishment can be as rewarding as the biggest. C getting frustrated that we stepped in, and spoke on his behalf shows an understanding beyond ours. He knows he can do it, he knows he has the words, he expects us to let him show that he knows.

Life is fast paced, it truly is passing by at warp speed. Yesterday I was bringing home my 3rd baby boy, my sweet, and today he is in kindergarten. We have conditioned ourselves to operate at a fast pace, equivalent to the world around us, it is our coping mechanism, either keep up, or get left behind. C is imploring us to slow down, give him the chance to show us that his saying "school is broken" means that he is working at his pace, and he will catch up to us, if we give him the chance. Slow and Steady. And when we slow down, hear the words, and understand their meaning, he complies. He finishes setting up his next Toy Story Scene, to come back to after school, and puts on his jacket and backpack, and waits by the door for his bus, ready to tackle his next accomplishment.

A Book in Progress

Preface:

 I started writing this a few weeks ago. I am not sure where I was headed, other than I have this continuous thought, that no matter how I plan, how many questions I ask, I will truly never know what the future holds for our family. I will never know what the future holds for any of my sons... They will learn, grow, and make decisions that will guide them towards their future, and I am here as a support, as a mentor, I am here to instill the values, beliefs and morals that are important to me, but just as I have done, as I have grown older, their beliefs will become individualized to fit their needs. We crave to know our children will be contributing members of the community, but to know, is different than to hope. To want is different than to be, and only time will tell what the future holds. 

I have spent so much time with this internal battle - praying to know what will happen, and allowing myself to live in the moment and do my best to guide the best possible outcome. For reasons beyond my understanding, I worry about C much more than my other 2 children. I know A and O will have bright futures, though I don't know what that really means, but with C, it seems blurry. I struggle allowing myself to believe in a future that I don't yet understand. I worry that by believing, I may become complacent, allowing something to slip through my fingers. By hyper-focusing on the future, I fail to look at the amazing and everyday accomplishments taking place right before my eyes, and with all of my children. 

So in summary, I like the turn this piece took. I like the reminder that we all have a book in progress, and it is up to us to update the pages, ensuring the outcome we desire. We pass the book onto our children to write on their own, as they take the reigns of decision making, and as we pass the torch, we embark on our own new chapter. 

Sometimes we just need to be able to say what we are thinking, out loud, with someone listening. Someone who won't judge, someone who understands, someone, who though may be on a different journey, may also be traveling on a parallel path.

Telling our story brings me peace, gives me hope that by telling our story we will give others the same confidence, the same ability to share. Sometimes healing lies in hearing words hard to say, and spoken out loud. Sometimes joy is found in moments that seemed inconsequential, but meaningful none the less. Sometimes not speaking, but listening to others stories gives a sense of relief, that you truly are not alone.

Our story will continue, there is no end, the book will continue to be written, and the plot will constantly change. We continue to work hard to better ourselves, our family and help those around us understand how our story is just the same, and yet different from theirs. No one comes with their story written from start to finish. We choose different paths, leading us to different destinations, and while on our journey, we change the setting, the details, and the content of where and why our story takes place.

We sometimes try to jump ahead, to get a sneak peak at what the outcome may be, we plead to know the ending. We ask those around us, to give us a glimpse of the end destination of the characters headlining the show, but as we know, there is no definitive outcome. As the story takes place, the end is constantly changing, shifting. What may be the end today, will surely be different tomorrow.

And so we share, as we experience, we hope that as we share, we help to guide the outcome for not just ourselves, but those around us. And just like any good book, the end will provide us yearning for more, wanting to savor each and every detail, and a desire to relive the past chapters, have one last visit with the characters we grew to love.

Time to Retrain Mama

When to stop caving in, just because a verbal request was made?

It was a tough night last night. The hubby is away at camp with our 6th grader for the week, and while I know he has his hands full with 9 6th grade boys, after last night, I would gladly switch places.

Bedtime routine is important to C. He likes to be warned well in advance that bedtime is approaching. He still doesn't understand the concept of time, so minutes, hours, days have little meaning, but the ritual of constant reminders makes it easier for all of us, when the time comes to head to his bedroom and read his book, tuck him in, and close the gate.

Last night, as I was issuing his many warnings, C kept traveling from the playroom to his bedroom, from the living room to his bedroom, and from his bedroom back to the playroom. I was cleaning up dishes from dinner, and knew that he was still playing with all his "friends", but wasn't aware of exactly what he was doing.

When I finally issued the last warning, and we walked hand in hand upstairs to his room, I found a full scene straight from both Toy Story and Monsters U waiting for us. I reminded C that our toys also needed to get sleep and that we needed to pick them up and put them "night-night". C became angry and frustrated, and threw his toys out of his room into the hallway. I gratefully took this opportunity to place them back in their respective bins, walked back to C's room, and closed the gate. I grabbed the book he had chosen, but he was aware. He knew that I put his toys away. He immediately began pleading, "Please, pretty, pretty please, can I have my toys back?".

It is heartbreaking. We work so hard to get our children to communicate, so when they do, we immediately comply with their request. Especially when verbalization is new, and it feels appropriate to give what has been asked for verbally as a reward. We fought for so long to understand C's needs and wants, and were happy to give what was asked for, it can be as rewarding for us, as it is C. Cookies for breakfast? Well you used the word cookie, said please, and are so proud that you were able to ask, how could I say no. You want to watch Toy Story for the third time in a row? Well you brought the movie to me and asked to watch it, how could I say no. I have trained my child to get what he wants, if he makes a verbal request. Now, I have to retrain my child, and hope that he understands what a reasonable request is, and can understand that it is my job to set limitations. That is a tall order.

I know C understands much more than he can communicate. I know that I don't acknowledge his level of comprehension, because I just simply don't know when he understands, but is choosing to ignore, or what he doesn't understand and therefore ignores. In addition, he is a master manipulator (said in the most loving way, you have to understand and comprehend, in order to manipulate a situation or person, so I am somewhat grateful for this acquired skill). His sweet voice, his long eyelashes, his innocent pleads, make it so difficult to say "no". Not only do I have to retrain C, but I need to retrain myself, his daddy, and his siblings. Every meltdown can't result in him getting what he wants. He needs to have expectations similar to his brothers, placed on him. We can't encourage the less than desirable behavior because we want the crocodile tears to stop. We can't let his sweet plead, "PRETTY, PRETTY, PRETTY PLEASE" change our decision.

Last night was a hard lesson learned by both mama and boy. I had to walk away, let him cry it out, and cry he did. He screamed, he stomped his feet, he banged on the gate. Tears flowed freely, there were moments of sweet pleads, and moments of glass shattering screeches. Our neighbors, I am sure, could hear the chaos, and had thoughts of calling 911 or child services. The tears and cries lasted for about 15 minutes. I tell you, it felt like hours. At times I felt like crying right along with him, and there were times I found myself giggling at his version of compromise. And then there was silence. After O and I finished our book (despite the mayhem in the room next door) I peeked in C's room. He had swaddled himself in his comforter, and fallen to sleep. There were residual hiccups from his tantrum visible, as I watched the rise and fall of his chest, while he slept. 

Special Needs - In Reverse?

Can Special Needs Also Encompass Gifted and Talented?

Special needs, to me, specifically in the school, has many meanings, beyond the traditional. This month we have been assessing O, but rather for Special Needs in the traditional way, his needs are unlike those I typically write about.

O is gifted. I know we all feel our children are gifted and talented in their unique way, but he is gifted academically. At two he knew all of his letters, was able to put together 25 piece puzzles, and was beginning to recognize sight words. He fought hard to keep up with his brother that is four years older. He was potty trained in 24 hours. Give the boy a challenge, and his competitive nature takes over, and he does everything in his power to succeed.

By three he was reading independently. His favorite book... a dictionary. he wanted desperately to understand the words that grown ups around him were saying. He made it through the Children's Dictionary in a week, and quickly moved on to the Webster Edition.

A was in 1st grade, and O was enthralled with his homework assignments. He wanted homework too, so we purchased Pre-School Workbooks to encourage his love of learning. We quickly realized that he had mastered the skills presented in his age appropriate workbook, and moved on to the Kindergarten Lessons.

By 4, he was able to write all of his letters, his name, and he had basic addition and subtraction facts memorized. You could see the wheels in his brain turning, as he was determined to solve problems in his head, without the help of his fingers and toes. He was far beyond his Pre-K peers, and his teachers also embraced his love of learning, by trying to take the lessons they had prepared for the class, and altering them to accommodate his need for a challenge.

By Kindergarten O was reading the same books as A, desperate still, to stay on pace with his 5th grade brother. He would complete his Kindergarten homework assignments, and move next to A to review math facts along side his brother. It became a game... could we challenge O, and stump him once and for all? He learned the terms multiplication and division, and quickly was able to process those facts in his head. We broke the terms down... 4 times 5 means 4 added 5 times over... and he would count out loud, "4, 8, 12, 16, 20!!!". It seemed there was no problem too large for our boy to solve, and he loved it. We would go around the dinner table trying to stump him, and rather than become frustrated when the answer was wrong, he would ask how to solve it correctly.

During our last Parent Teacher Conference of his Kindergarten year, we asked the teacher what we could do over the summer to foster his love of learning, and ensure that he didn't loose his enthusiasm, his desire for a challenge, without burning him out. It became clear that we worked so diligently on math facts, that his writing and comprehension skills had plateaued. He was now right on track with his peers, rather than ahead.

We created a reward system. We encouraged our boys to choose books from the library, and then they were to write a journal entry on what they read, or even what they experienced during the day. For every page they logged in their journal, they received an hour of electronic time. They could bank their hours, to redeem all at once, or they could use them as they earned them. We did this for the entire summer, and the end result, for both A and O, was what we hoped... Both boys are off the charts in Reading Comprehension and Language Arts.

As the year has progressed, the gap for O has increased. He finishes his work ahead of his peers, he reads his assignment, and then pulls out his novel while the others continue their work. His teachers have provided as many opportunities as they have been able, to continue to challenge him, but with a class of 24 students, it is hard to teach to just one. We continue to work at home, challenging him with math facts, letting him check out books from the library that are intended for an older audience, and he continues to lurch ahead.

SO... we requested an assessment for Advancement. The request and subsequent meeting is as arduous as a request for an IEP. As a matter of fact, the meeting to review the assessment was very similar to our request for an IEP. Many of the same players sit at the table, but rather than Special Educators, you have Specialists, reading and math. The process is much the same, testing upon testing, IQ tests, and ending with a thorough psychological evaluation.

Special Needs indeed. O is in need of an academic environment that continues to challenge him, fosters his desire to learn, and is executed with his specific needs in mind.

We focus our efforts on our children with special needs, and advocate for their best educational environment. We need to do the same for our gifted children, who are special in their own and unique way. While I understand that there are literally thousands of children our school system has in their care, we, as parents, need to ensure that our children are getting the educational services they are entitled to. Just as I feel when walking into an IEP meeting - "Am I asking too much", "What accommodation can C live without, and what is essential to his continued academic growth" - I found myself asking, when walking into O's meeting. I had the same anxiety, the same reservations, "How special is my child, really?", "Is he really so outside the box, that he simply cannot make his way back in?", "At what point am I asking too much, and what determines how much is just right, and I can't fail my child by asking for too little". It is daunting, but as I have learned, I am my child's best advocate, and so fight I will, for what I believe will provide the best academic outcome for O.

IF AT FIRST YOU DON'T SUCCEED, TRY, TRY AGAIN

We don't know how resilient our children are, until we give them an opportunity to show us. Yesterday C had a dentist appointment. Two weeks ago he watched a cartoon that showed the main character visiting the dentist and losing a tooth. The Tooth Fairy visited the character (I can't remember which cartoon it was, but I think it was on Disney Jr.), and from that day on, C asked daily to visit the Dentist and have the Tooth Fairy visit. Of course he asked in his own way, "We have to go to the Dentist today, I have a loose tooth and the Tooth Fairy needs to come."

Many of us have anxiety visiting the dentist, and because of our anxiety, I think we tend to pass the fear on to our children. Add in a cognitive, developmental, sensory or attention issue, and there is a potential for disaster. When I made the appointment, I made sure that the team at the office had updated their files to show C has Autism. I didn't realize that I was nervous, until C got into the chair. C however, had no anxiety. He climbed right into the chair, looked the Dentist in the eye, and smiled.

C with Dr. Katz

Our visit was perfect. C was uncomfortable with the buzzing contraption they use to clean teeth, squirming, but not complaining. He didn't bite, didn't yell out, and remained in the chair. He had no cavities, no loose teeth, and his oral hygiene is top notch, according to the Dentist.

After the clean bill of health, the Dentist, Dr. Katz, looked me in the eye, and said, "C did amazing!". My eyes welled with tears, and I let go of the breath, I didn't even know I was holding. Trained at Kennedy Krieger, Dr. Katz has a complete understanding and acceptance of our children's needs. He was patient, accommodating, and was able to work quickly and efficiently.

Having a dentist that is calm, while working on our children, and in addition, understands our children's needs, on a level greater than the average, proved to be a key component to our successful visit. Putting my mama fear to the side, and acting as if a visit to the dentist was as common as a day in the park,  ensured C had no anxiety.

I know that I sometimes cancel plans, don't attend functions or parties, and plan our family activities around C's past successes. What I tend to forget is that I will not know how C will react to a situation, unless I put him in that situation. C's success is based on the experience I allow him to have. If we keep him contained in the safe bubble of our home, how will he ever learn to navigate the world around him successfully? My fear cannot hold him back. My sensitivity to others response to his Autism, is my own issue, not his. What I forget is that the community around us is learning, becoming aware, more accepting of his needs and response to his environment. If I encounter someone less understanding, it is my responsibility to try to educate and encourage acceptance.

There will be failures, I will attempt activities that just won't work with his needs, but I have to try. And if I encourage C to try, and try again, maybe he will learn to tolerate activities that we never thought possible. If we, as a family, surround C with guidance and support, and contain our own aversion and fear, if we try, maybe those activities we thought were going to be failed attempts will be successful and natural, just as a trip to the dentist turned out to be.

For more information about Dr. Katz practice: Katz For Kids