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....