Journey toward a diagnosis

We never thought we would need to embark on yet another Journey toward a diagnosis.  The journey for our oldest took almost 2 years, a lot of specialists, persistence and patience.  Fast forward a few years and here comes Journey toward a diagnosis take 2.  

Our youngest was a happy go lucky, silly, always smiling, sometimes mischievous, little ray of sunshine. When I first had a gut feeling that he may have ADHD I was completely perplexed; asking myself how could this happen and why did it happen?  Those who know me, know that I don't run from asking for help to ensure my children are happy, taken care of and in a productive, safe learning environment, so why hadn't I yet asked for him to be tested for ADHD?  Well a few reasons: First, from what I had read he was too young to be tested b/c when I first had concerns he was only 5 and too young for an accurate diagnosis.  Second, I was hoping that the early intervention and IEP goals we put in place (small group settings, pull out for reading, extra time when needed etc.) would do the trick.  You may be thinking, what happened next, so let me tell you.

Kindergarten came and went and I continued to have concerns because despite all of the IEP services we had been granted and/or fought for, we weren't seeing much of a difference in the way he was learning, retaining and engaging. Given the fact that we had been down this road before with our oldest for Autism Spectrum Disorder among other things; we weren't newcomers to this world.   We know first hand the positive impact of early intervention, appropriate IEP goals, educators and the relationships that brings it all together to a successful outcome. 

Our little one went to summer school, where he didn’t learn much however it wasn't a complete loss as I learned something from one of the teachers that proved helpful, at least for Kindergarten.  Toward the end of the school year I had read an article about a classroom in a Howard County school who had all kids, those with delays and those excelling in school on the balls and EVERYONE performed better.  Being a person who is willing to try alternative/new programs, I asked if the ESY host school happened to have a stability ball. The teacher looked in the classroom closet and we were in luck.  Not only did they have a ball and base, it fit our little guys height.  Throughout the summer, when they placed him on this  stability ball seat, the teacher noticed that he had a tendency to focus better.  Hmm, perhaps we are onto something here!?!

We began first grade hopeful of happy year for him and significant progress toward his IEP goals.  While there were some bright spots, as he made his way through first grade he seemed to consistently struggle.  In class it was mostly staying focused, retention of information learned and sometimes appearing inattentive.  At home, in addition to all of that playing a part, we witnessed impulsive behaviors in a way that made my jaw drop to the floor and my heart beat out of my chest.  While I won’t go into any detail today about those events, I will say it put me on very high alert. 

We knew the setbacks and/or lack of progress at school weren't due to the way his teacher taught, what she observed and how she engaged with him because our older son had her a few years prior.  Furthermore, based on the partnership we have with this teacher, we knew he was receiving every bit of additional support possible under the guidelines/rules of school administration.  By process of elimination, this led us to complete frustration with his case manager.  Rest assured we tried and tried (for over 2 years in fact) to give this person the benefit of the doubt and unfortunately what was being relayed to us (which wasn't much) didn't align with the limited progress and at times regression shown on his school work, progress reports and report cards.  Unless an additional support person was guiding him there was little to no progress made and in some cases, what appeared to be regression.  

When I first brought up the possibility of ADHD with the school psychologist, she stated that she wasn't sure based on her observations, however was willing to go with my theory and talk to his teacher and the case manager.   About a week later the psychologist called me back and said the teacher didn't have enough information to go on to provide a professional opinion while the case manager basically dismissed the idea.  I went on to adamantly express my concern that this case manager was not looking at the big picture.  So now what? Were we at a dead end?  Never say there is a dead end when it comes to helping guide, support and lead your children.  What did I do; the only thing I knew how, continued the conversation advocating for my child.  I asked the school psychologist if she had reviewed the IEP in detail, paying close attention to all of the goals.  The answer was no, but hold on let me pull it.  Together we began to review his full IEP program and based on the scope and depth of his goals revealed she came to the conclusion that I was very likely onto something.  She went onto explained that without seeing just how many different tools and goals we had in place to help him focus, retain, keep him focused she couldn't have seen what I was expressing as a potential trigger.  One can only imagine my mix of emotions - thrilled that the school psychologist was willing to dig deeper to help my child and the complete disappointment, anger and frustration with the case manager that after working along side him for 2 years, didn't connect the dots or even consider this a possibility!  This realization gave me the motivation needed to go back to the school, request immediate changes to the support he was getting from his case manager and seek further testing to find out what was triggering the behaviors and inability to retain and move toward his goals as we would have expected.

And so the long wait began for us and a lot of testing for our 6 year old first grader.  After several months of testing, compiling reports and creating a summary of the results we were ready to meet again with the entire IEP team.

Diagnosis: ADHD - all 3 possible components (Inattention, Hyperactivity and Impulsivity)

Where do we go from here with a Daily Forecast somewhere between Sunny and a Category 4 Hurricane....

Moving Mountains

As my 45th birthday approaches, I do as I have always done leading up to a milestone birthday. I reflect on what has transpired since the last milestone birthday, think about the successes, failures, things I would do differently etc. This year I find myself thinking mostly about my never ending journey to move mountains for my two boys in hopes of providing them with the best possible school experience(academic and socially) while focused on their mental and physical well-being.

In a curious moment, I searched Google for the meaning of moving mountains only to find everything from a hit song to a vacation home and even a marketing company which told me that moving mountains can mean whatever you or I perceive it to mean. For me, moving mountains is about conquering the unknown, overcoming the obstacles set in front of you, finding a way to go over it, through it, around it; whatever it takes to keep you on the path you were meant to take. I am not saying that we are predestined for all of the events in our lives to take place(my 10 year old would argue otherwise) just that we all have some sort of mountain to move; the outcome stemming from how one decides to go about it. Some will sit and stare at the mountain, wallowing in their sorrows along with a whoa is me attitude, some will try and chisel their way through the mountain one hit at a time, some may avoid it all together and run away from what stands in their way, some may look for a way around it or over it and maybe just maybe some will let down their guard and be vulnerable enough to ask for help.

This simple 4 letter word - HELP - is hard for so many people to say yet it is exactly how I began the journey toward successfully moving my first mountain. I feel it is important to note that for most of my life, the word HELP was not part of my vocabulary. I am not sure if I was too stubborn or too proud to ask or if I just thought I could figure it out on my own. Regardless of what stopped me from asking, my children gave me the courage, strength and desire to put up the white flag and ask for help. What began as my very own little dream team of special educators, support services, psychologists and behavioralists 9 years ago has turned into an ever growing support system that could populate a small village.

Over the last 5 years I found myself saying I am a "tiger mom" yet after reading the "definition" of Tiger mom, I have come to realize that this term couldn't be farther from the truth. The truth is, I am a supportive mom Advocate who encourages my children to try new things, to fail at times because without failure we can't learn. I also tactfully partner and collaborate with the educators and subject matter experts at the school and otherwise. Why; because that trusted and mutually respectful partnership allows me to successfully fight and obtain the programs and accommodations needed for each of my boys to be successful. What makes me so sure this approach works? To start, both boys have received some type of services since they were under 3 years old. It continues to take a lot of research and persistence on my part to stay on top of the every changing needs of the boys as they learn, grow and change with each passing quarter. Once I am armed with the appropriate facts, I approach the powers that be and request a meeting. Those meetings, both formal and informal, have led to life long friendships and mentors for me, beautiful relationships for my boys and their educators/coaches and support staff as well as growth and success I never thought possible, especially for my soon to be 5th grader.

I am pretty sure I lost count of just how many mountains have been moved, demolished, shaved down, walked around, into and over. Even with all of the "wins" I know that I am far from being able to stand side by side with all of my fellow villagers at the peak of the mountain, hands clasped together and held high screaming the words WE DID IT! This may sound glass half empty to some of you, but the truth of the matter is, the journey of moving mountains for my boys may never end so I take each small win as it comes and use it as motivation to continue advocating for my boys knowing that the journey is far from complete.

I can only imagine what I would have told someone who asked me 10 or 15 years ago what I thought my life would be like today; one thing I am certain of is that it wasn't filled with conquering mountain range after mountain range for my kiddos as has become my reality. At the same time, the love I have for these boys is like nothing I have ever experienced and would never ask to change the events that led me to the family my husband and I have made together! These boys are our pride and joy, the happiest of times, the saddest of times and our proudest of times.

After an enjoyable evening of wine, cheese and conversation with a dear and trusted friend of mine she said, "It's your chance to do what you are inspired by…I know you can do it :)"

My children are what inspire me most and nothing would be more rewarding than paying it forward to those who weren't lucky enough to happen upon the people I did all those years ago, guiding me toward what has now become my "new normal".

Maybe, just maybe it is my destiny to help others understand that when you let your guard down and surround yourself with the right support team, arm yourself with the appropriate knowledge and are willing to gracefully fight for what you know in your gut is right, they too can move mountains.