An Open Letter To My Children's Therapists

 "Feeling gratitude and not expressing it is like wrapping a present and not giving it."  

William Arthur Ward

It is impossible for me to express my deepest gratitude for the positive impact you have had on my family.

You have spent countless hours in my home working with my children when they were younger. You have seen me at my most vulnerable, exhausted and fearful of the future.  You advocated beside me when I needed it most and fought for my children when I did not have the knowledge to do so. You have celebrated the victories with me and helped strategize when things went askew.

You gently pushed their boundaries all while keeping in mind they are children first, not simply Autism.

I am cognizant of your endless patience and how it appears effortless. Rather, I am keenly aware it is not. I am thankful for your guidance, your wisdom, and forethought as you execute their care plans.  You spend countless hours documenting progress and formulating new plans as they grow and achieve new goals. For this, I am forever indebted.


You are mothers, daughters, wives, and friends who tirelessly strive to better the lives of the families you interface with daily.  You continue to further your education in hopes to learn new techniques and cutting edge strategies that will benefit them in their daily lives. This does not go unnoticed.

I am humbled by your selflessness, dedication, and caring hearts.  It takes a unique and passionate individual to walk this path and for this, I am eternally grateful.

You have been a champion of my children finding their voices and in turn this has inspired me to find mine as well.  Thank you for your unwavering guidance in these uncharted waters. You have afforded me the ability to stretch and grow as an individual, and a mother; farther than I could have ever dreamed or imagined. Without you, our lives would look significantly different today. 

I thank you for playing such an impactful role in my children's lives. It is truly an honor, and a privilege to experience this journey with you as my children guide us all on this long and winding road overflowing with unexpected stops along the way.

My outlook on life has been forever changed for the better.  Humility, patience, and taking nothing in life for granted, even the little things, have all been invaluable life lessons that are nothing short of extraordinary.  Thank you for paving the way for me to embrace this wonderful life I have been afforded. I am unequivocally blessed beyond measure for these gifts. 

Thank you for never settling for anything less than their best. You play such an important role in shaping the two of most significant pieces of my heart and soul that walk outside my being every single day.

With unending gratitude and love,

Monica

"The Serenity Prayer" - The key to Sanity....

"God grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference." -- The Serenity Prayer

We all know this as the Serenity Prayer. Quite often for me it also is the "Sanity Prayer". Having two children with Autism forces you to reevaluate your life and focus on tackling Autism head on. When you first receive the diagnosis, your world is literally turned upside down. Eventually you come to terms with what it all means, the implications, the adjustment and the reality that your vision for the future has been shattered. What follows is often an overwhelming need to try anything and everything to "fix" your child. While that instinct is still very much in the forefront of our daily lives, time, experience and perspective have helped us settle into the reality that Autism will always be in our lives in some form or another. You hear stories about people curing their children and bringing them back from the deep recesses  of Autism. While I don't doubt that is the case for some, the vast majority of us will never find that peace, not fully. It is coming to terms with that fact which will make the difference in our daily lives.

This is not to say that you shouldn't fight tooth and nail to get the best services possible and research and explore every avenue available to you because as a parent that is your job. It is what we do, we protect, we try to educate and raise our children to reach their fullest potential, whatever that may be. My children are improving all the time because we fight hard, advocate for our children, collaborate with therapists, research strategies and implement. It is truly an exhausting process day in and day out, feeling like you are always fighting an uphill battle with no end in sight. However, during this process there will be problems that no matter what you throw at "it", things will remain the same or only budge ever so slightly. While this can be discouraging and often times seemingly insurmountable, it is reality. I'm not proposing you give up, that there is no hope...this is what what fuels our fire EVERYDAY. Hope that our children will reach their fullest potential and we have NO doubt this will happen.

What I am suggesting is this: Remember the process is long, it is a marathon, not a sprint. Take it one day at a time, one battle at a time, and most of all to keep your sanity......Ask God to grant you the serenity to accept the things you cannot change; the courage to change the things you can; and the wisdom to know the difference.  I promise, it will save your sanity, prepare you for the marathon and it will remind you that you are not alone in this process.

Chain Reaction

You will not realize the magnitude your actions have on others lives until those actions change the course of someone else's fate. 


Recently I was reminded of how powerful a statement that really is. First, by a woman that I admire and truly respect as a professional and an individual. Secondly and coincidentally, I had the blessing of experiencing the impact of my own actions just days later. A few weeks ago, I was having a conversation with other moms in the therapy clinic while all of our children were with their respective therapists. The particular topic of the afternoon was IEP's. We were discussing strategy, comparing notes on who was getting what for their child and if they were happy with the services etc. Contrary to the school system's belief, parents DO talk. It is our right and in the best interest of our children if we keep our fingers on the pulse. With that said, ideas were exchanged, food for thought was provided and we all went on our way to our respective next stops in our hectic daily lives.

A few weeks later, I was at the clinic and it was a quite afternoon there for a change. Just one mother was there waiting for her child. We have seen each other in passing and always exchange pleasantries all with a smile that only a mother with children with special needs can recognize. The smile that imparts a thousand words; yes, I too did not get enough sleep last night because this is the 3rd night in a row my child was up at 2:00 am with the yeasty beasties. Or, I get it; I have had my limit of tantrums for the day as well. The list is endless as you can well imagine. This day however we had a chance to talk for a few minutes in a quite clinic.

She began to recount the day I described above regarding the discussion on IEP's, from her perspective. She was there that day too but did not join in the conversation. I vaguely recalled the day at first, my days seem to perpetually bleed into one another and can best be described as "Ground Hogs Day" ~ Pachorek Style. With that said, I did recall the day, sat, and listened to her concerns as a new mom dealing with IEP's. She has been plagued and overwhelmed with this nauseating feeling that she could not manage it all. That she was doing her child a disservice because she believed she was not well versed in the world of IEP's. This fear has had her paralyzed and as a result, has been so afraid of doing the wrong thing and did not know where to start. Until that day, it was her "aha" moment. With tears in her eyes, the mother then began to thank me for all that I did for her that day. I was perplexed at first, as we never did exchange words that day. I told her no thanks were necessary but I had to ask what she was thanking me for, as I had not really done anything at all. She said to me "Don't you get it! You always seem to be so relaxed, under control and seem to have it ALL together and your endless knowledge is inspiring. It then hit me; if you can do it with 2 boys then I KNOW I have the strength to do what I need to do for my child". I was humbled and at a loss for words. With that, we parted ways, as her son was finished for the day.

As I sat in the clinic alone, I was able to reflect. My actions in a casual conversation had a profound impact on someone's life and I was completely unaware. I was just being me, during the course of another average day. There once was another mother that I encountered when my first son was diagnosed with Autism to thank for my outlook. As I too was once, the women frozen in her tracks afraid to move for fear of a misstep and overwhelmed at the impact that Autism would FOREVER have on our lives. She has four children with Autism and she has the best outlook and unwavering faith. Her spirit is what drives me every day to reach farther and never give up hope.

Whether we want to acknowledge the fact or not, every day we step out into the world we impact other peoples lives by our actions and we have no idea and more than likely never will. That is quite a responsibility don't you think? It should give us pause in how we carry ourselves and the message we want to impart to those around us every day. Just think, this mom now has the fortitude to tackle one of the many daunting tasks that we as parents with special-needs face. Her confidence and actions will I am sure inspire others to do the same.

Hope puts our feet on the path when our eyes cannot see it.

Hope Is a belief in a positive outcome related to events and circumstances in one's life. Hope is the feeling that what is wanted can be had or that events will turn out for the best.

Can you have hope without faith? I would image it all depends on who you ask, but I know that for me personally they work in tandem. I have faith, therefore I have hope. I have faith that my boys will live up to their fullest potential, whatever that may be. While I can't envision what that is yet I can say I have faith & hope it will happen. I just have to trust that my faith will guide me on the right path and keep my hope alive everyday that we will get there. One day at a time......

My True Warriors, My sons

As my kids take a few minutes to unwind from the crazy schedule of school and therapy this morning I wanted to take this time to share how my children reminded me that I am so very blessed to have them in my life, guiding me to be a better person and parent.

As a parent, the diagnosis of autism upends your world. Once you have moved passed the acceptance phase and you are ready to tackle autism head-on, it is a daily struggle to fight to heal your child, or children in my case. It is a relentless, labor-intensive and harrowing task, overwhelmingly performed by mothers, which tests the strength of marriages, the resilience of siblings and the endurance of the women themselves. The descriptive “warrior mothers” has recently been coined to describe these women. As the mother of 2 children with autism I would walk to the ends of the earth for them (as any other parent would, autism or not). While I recognize the significance in characterizing these mothers as “warrior mothers” I truthfully and humbly feel the real warriors are the children themselves. What we as parents and educators demand of them on a daily basis would make most people’s head spin.

While scientists debate what has caused the skyrocketing autism caseload - a real increase in cases, better diagnoses, environmental factors, vaccine injury or the decision not to institutionalize children with autism – regardless, there is no question that more and more families are raising “warrior children” and the number of these children is growing exponentially. I for one am humbled on a daily basis by the amazing things these children accomplish and the demands they meet. Despite their fears, anxieties, lack of ability to effectively communicate with their peers/family members, their confusion with the world around them, etc. they fight on everyday. They spend countless hours in therapy, endure biomedical treatments, start school at 3 yrs old and are asked to meet a list of goals and objectives that would make most cringe.

The children are the true warriors, the real fighters. I was reminded of that yesterday, as my younger son Shane struggled to tell me what he wanted. Despite his apraxia, and his obvious frustration, he fought off his inherent need to scream and instead he paused and struggled to get the words out “want juice”. Finally he managed an unprompted two word utterance. This was his latest personal Mt. Everest that he managed to climb and he was so proud of himself. While to some this would be a small feat, for us, that took countless hours of screaming, and tears on his part and mine, to get to that point. My older son Lucas has his own personal struggles as well. But he has come so far. A few years ago I was grief stricken at the thought that I might never hear him talk. Yet just now as I sit here and recount the events of yesterday that gave me pause, he walked in my office, took my face with both his hands, kissed me and said "I am so very happy, I love you mommy". Yes I am blessed. Sadly our autism story is not unique; there are millions of parents out there just like me that face the same struggles and obstacles on a daily basis.

Yesterday, amidst the daily shuffle of therapy for both kids, 2 different schools, transition meetings and IEP’s I had to step back and reflect. I am blessed; they teach me EVERY day what the true meaning of a warrior is. They are the true warriors, my heroes, my sons.

Hello, My name is Autism

Autism not only affects the person who is diagnosed, it affects the entire family. Our family is just one of millions of other families affected by this complex disorder. Lucas, our first-born son was diagnosed at 19 months of age with Autism. However our story begins much earlier than this. His first year of life was pretty typical, or so we thought. He was our first-born; we had no other children to compare him to. Lucas was meeting all his developmental milestones on time. Sleeping through the night, cooing, smiling, rolling over, crawling, and walking all happened when they should. At his 1-year well visit the nurse went through the usual checklist of milestones. Then she asked does he have 3-5 words? Does he bring you books or toys to play with him? Does he point? I could not say yes to one of them. She said, “don’t worry, he will develop those skills very soon. He is a boy they often develop slower”. That really marks the beginning our journey, we just didn’t know it yet.

At 13 months of age we called Early Intervention for an evaluation. We just knew that there was something wrong we just could not put our finger on it. Fast-forward almost 2 months later, after his evaluation; they concluded that he was “significantly developmentally delayed”. We felt like the bottom just dropped out of our life raft and we were drowning. We finally made it to the surface and took a huge breath and that is when we knew our lives were to take a different path than we had expected.

For the next year and a half Lucas qualified for Early Intervention Therapy and we fought to get everything we could through Babies Can’t Wait. We had no time to waste. Lucas needed to be brought into our world and it needed to happen fast. He had no words and it was heartbreaking to watch him struggle to communicate. Many days both he and I ended up sitting on the kitchen floor in tears. Lucas crying because I would not give him what he wanted without at least signing for “more” or uttering some kind of an approximation for what he wanted. I cried because I wanted to give him everything he desired without him having to work for it. I cried because we didn’t know if he would ever talk. I cried because my beautiful baby boy was struggling and I knew then he would have a lifetime of struggle. But alas, this was the best thing for him. He was forced to interact with us in order to get what he wanted. To this day there are tears of frustration on his part and ours, but we have learned that it is what is needed for growth.

We have been blessed to have an amazing team of therapists that not only work tirelessly with Lucas to teach him the valuable skills he needs to learn in order to function, but also they have empowered us as parents to become active participants in his treatment plan. They give us the tools we need to ensure success. They continue to help us with strategies to work through his multitude of sensory issues as well as many other obstacles that he faces while trying to navigate our daily lives. They even encouraged me when I decided that I would take a training course on how to implement Applied Behavioral Analysis therapy in the home. It taught me how to be both mom and therapist, which is what I needed in order to feel like I was making a profound difference in his life. Our family will be forever grateful to our dream team of therapists that have helped us along the way. Without them we would not hear the sweet little voice of Lucas as he says, ” I want more tickles please” or when we say “I love you” at the end of every day he can now at least say it back. With out them our little boy would be lost and so would our family.

Autism is an expensive disorder to treat that requires a lifetime of therapeutic intervention. There is no cure, only the hope that we can make his life as fulfilling as possible and give Lucas every opportunity that he should have to find happiness and to reach his full potential, whatever that may be. Hours upon hours of one-on-one interaction between trained specialists and those afflicted seems to be the only solution. In order to make this happen it costs money. Most families do not have access to those types of funds, and we are no exception. Even with state funding and insurance coverage it just isn’t enough to cover all the expenses to ensure proper therapies that are vital to his recovery.

It has been almost 2 years since we heard the words that will forever resound in our minds and our hearts, ” your son has autism”. It was just one week after having given birth to my younger son and it changed the course of our lives forever. Today, Lucas is doing beautifully. He is a happy engaged little boy who is now speaking. He is still significantly behind his peers in many areas but he has far exceeded our initial expectations from when he was first diagnosed. He is a remarkable little boy. He still has Autism and always will, but he has improved dramatically with therapeutic intervention.

It has been an arduous journey thus far and we have no doubt that things will be difficult in the future. However we face each day looking forward to all the new things that Lucas will accomplish with the assistance of the much-needed therapy that he receives. Most days we look forward and can face the challenges that lay ahead. On the real difficult days we pause to look back to see how far he has come on this journey. That gives us hope for the future.