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.