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A Journey to Understanding: Dyslexia, Dysgraphia & ADHD

April 18, 2018

Welcome to our new series - Journey to Understanding. In this series, We invite readers along as real families facing real parenting struggles share real stories in their own words. If you see yourself in any of these stories, we hope you find answers. If you know of a family with similar challenges, we hope you find a new understanding and compassion for other parents who may face struggles unknown to you.

 

As you go through your life and see parents struggling, try to give them the benefit of the doubt, be kind and understanding. Your kindness just might be the best part of their day!

 

Thank you to our very brave contributor who invites you along on their Journey to Understanding: Dyslexia, Dysgraphia, & ADHD with a detour through the land of Auditory Processing Disorder.  

 

 

Since my son was an infant he has been different, always happy and exuberant, full of life and love. Never angry....lighting up people’s lives every time he meets them. He was never one to sleep, instead needing the constant hand on him or being wrapped up someone's arms. Sleep training.....yeah right; we opted for sanity in our lives and chose to have him sleep with us. Being first-time parents, this was all normal to us, it is all we knew. Of course we had friends with kids, kids who could sit through a meal, kids, who did not climb 8’ fences at the age of 3, kids who could self soothe. But they did not have that extra spark that our son had, always the life of the party!

 

When he entered pre-school, he was always the teacher’s favorite. A free thinker, with a charismatic personality, a kid that everyone loved to be around. Yet when it came time for school reviews, it was always said that he gets distracted easily. Being that my husband has ADHD and dyslexia as does his parents, I was always asking the teachers, do you think he (my son) could have these as well. Of course we were always met with NO, he’s just a “boy”, or he is just active. I would think "ok, well, I guess they would know what to look for." Things went on like this for quite a while, I would always ask and they would always reassure me that everything was fine.

 

Once my son started Kindergarten, I started noticing how hard some things were for him - Things that I knew he should be able to do. I would ask the teachers and again would only be told "He is fine, he is just getting used to his new environment." Again, I would say ok....I guess I need to ease up. I would ignore that inner mommy voice we all have. During one of his standard statewide tests, he fell below on his reading/writing. I got an immediate call from his teacher to reassure me saying that they only met with him for literally a minute and that I had nothing to be

worried about. But that he would be pulled out for RTI just to bump him up. This seemed to be a good plan as in my mind I thought he “didn't need it” any free and extra help was fine in my book.

 

Kindergarten came and went with ups and downs, but he seemed to be progressing and was

happy....always happy.

 

First grade started and was, from the start, hard for him, I would get emails from the teacher that he had a messy desk, that he had to be redirected alot, that he never completed his tasks on time, he was the last kid to his desk, etc. I did not think much of this as we are a pretty free spirited family and none of that really matters to us. What did stand out to me as a concern was even with him being in RTI, I was still seeing great difficulty a home when I would sit down with him for homework.  He struggled with reading and writing. He seemed to be trying SO hard, yet just not able to differentiate the sounds of letters. I would sound something out for him and he would hear it and write it totally different. Of course, I would get frustrated, “How can you not hear the sound I am making?” I would ask him. This would of course lead to him crying and me yelling and it would be a horrible vicious circle. 

 

That's when I started listening to my inner voice & I knew something was wrong. It was then that I called a meeting between his teacher, his reading specialist and his speech therapist at school. I came armed with samples of his writing and point blank told them they are missing something. It is not for lack of trying, there were different opinions in the group. Some thought he was fine, others could see that something was indeed off.  At the meeting, I decided right then and there that enough was enough and I was going to make it my mission to find out what was really going on. I knew in my heart of hearts that something was not right. I felt like this was a broken puzzle and I was trying to put the pieces together and just could not figure out which ones go where to make it whole again. I needed to narrow this down to find out what was happening. I emailed his teacher thanking her for the meeting and she called me, to help guide be through what I should do. I had no clue as to what steps I should take.  Looking back, that call was both amazing and terrifying.

 

I am not a professional, I had no clue what steps to take first in figuring out the mysteries of my son. I started by writing a letter to the district requesting a full set of evaluations. Much to my surprise the district was very quick to respond and soon, he was scheduled for testing.  I continued to feel totally lost and like I was failing him, but I spoke with anyone and everyone who would listen. It was during a random conversation with a friend of mine when I was telling her his issues and she mentioned Auditory Processing Disorder. I ran right home and googled it....so many of the boxes clicked and I felt for a brief moment “this is it”.

 

I immediately made an appointment with a specialist at Blythedale Children's Hospital to have him tested. After an exhausting 5 hour test, it came back that yes, indeed he had an Auditory Processing Disorder. I sent this report to the district and thought....oh, good, I have found the cause of all his difficulties. A meeting was called during the summer since all this happened the last month of school. It was at this meeting that we got a 504 plan that would allow him to receive an FM system in his 2nd grade classroom. The thought was that it would allow him to hear the teachers voice over all the other ambient noise. I felt confident that this would help, it had to help. He would enter second grade armed with this new tool and we would now have a great year of school. Yes, we were still waiting on all the district’s evaluations but this was it! Right?

 

Wrong. Second grade started, the evaluations came through & our meeting was called and we sat there listening through tears as we reviewed the evaluations & heard how he was starting to ask to go to the bathroom or the nurse all the time. How the teacher saw no difference in using the FM system or when she turned it off. How kids were starting to shun him in the classroom. Sitting there recalling how at home at homework time for the 1st time ever hearing him crying, broken, sad telling me how he was the “worst” how everyone was “better than him”. I watched as my once very confident and happy little boy was slowly losing his spark.

 

I sat there in that meeting trying to get the answers I wanted, feeling totally exhausted and even more confused by what I was hearing. “Just tell me already what is wrong with him” I wanted to scream. Finally toward the end of the meeting I frankly said “So, does he have dyslexia and ADHD or NOT?” It was with the look that the evaluator  gave me that told me my answer in a silent
"yes." 

 

They decided at this point to “test” placing him in a “special class." A class that would allow him the small group setting that would allow him a fighting chance in reading and writing. Hoping this would also help to build back his confidence.  

 

I won’t lie I was very hesitant to accept this recommendation at first.  A million question ran through my head: Would he be labeled? Would his peer’s reject

him? Would he feel ostracized? I thought, "I mean we really still don’t know what is going on." I felt like we were still missing a piece of the puzzle. But my fear of losing him totally, made us make the choice to try it.

 

We have always been very honest with him, we told him after that meeting that come Monday he would be moving to a special class for a couple hours a day. A class that would help the teachers learn how to teach him. We told him that he learned differently than other kids and

that it was a strength. But it was hard for teachers to figure out. I was so nervous on Monday, I picked him up after school and reluctantly asked him “so how was the new class”. He was SO excited, it was an immediate 360. He once again seemed more confidant, he once again

seemed to want to learn. His defiance at home and his lashing out at his little brother became less and less. How could his frustration in school have so many effects on his personality. I had no clue that this small change could have such a dramatic impact.

 

After that initial meeting we had also decided to have him privately evaluated by a neuropsychologist. I needed answers, concrete answers not the vague answers the school evaluations offered me. I need to put the pieces together, to make sure I was not missing something. Through all the testing.....hours of testing my son was a trooper. Charming the pants off the psychologist. We anxiously awaited the results, weeks passed, school settled back into its new routine. Finally the results were in, my husband and I spent 5 hours listening to every detail of our son’s educational issues in percentages and graphs. This was the best fortune we ever spent! We finally had our answers, I could finally fit it all together. It came out in

this review that not only did our son have Auditory Processing Disorder, but also a giant what I like to call “bag of shit”: Dyslexia, Dysgraphia, and ADHD.

 

I was amazed sitting there listening to all the challenges that this little guy has had to deal with for such a long time, at how well he has kept his positive, happy spirit intact. Yes there were times that I was terrified he was losing it. But now that we knew what we were dealing with I felt like we could start helping him. Teaching him

about the differences he has and the strengths that these differences allow him.

 

I found an amazing tutor to help give him the tools to learn to cope with his Dyslexia & Dysgraphia. I read any book I could get my hands on about kids with the same learning difficulties; and most importantly I knew what was going on. This I could handle, I could help him

with it. I could help him know he is not “dumb” he IS trying hard, it is just that he has to do things differently than his friends. I did feel frustrated that it took so long, so many parent teacher conferences with me asking if he was dyslexic to finally learn this, but I could now move forward.  Right now we are in a good place and getting him the right help. He got a ton more accomodations after we presented the district with the private evaluation and are so grateful for their support.

 

The diagnosis of ADHD has been a more challenging one for me personally. Other than his behavioral issues he had before we found out how challenging school was proving for him due to the dyslexia. He never exhibited behavioral problems and still to this day remains a jovial and extremely happy, positive little guy. He makes best friends out of anyone, and engages with everyone he meets. He mainly struggles with impulsivity, focus and hyperactivity. He gets a thought in his mind and no matter how right or wrong it is to act on it he is pedal to the metal to do it at any cost.

 

At the end of the week, typically on Saturday at some point, it seems like he is a caged animal, totally unable to control his body. Needing to literally climb the walls or run. All of this is really hard for someone like me who is calm by nature, at times I just I can’t take it.  What has been the most difficult to watch is his relationships with his peers meet challenges. I have watched as kids dismiss him, I have watched when he is in the middle of playing a game with friends then all of a sudden leaves and the other kids are left hanging. I know he does not want to let his friends down, I know he loves making people laugh, I know he always means well. I can see his peers getting annoyed with him. I understand it, I have felt the same way many times. He does not want to get in trouble at home or at school. I thought for such a long time he just needs to concentrate better, he just needs to learn to control his body. I would get angry with his what I would call “lazy” ways. Even with the diagnosis I somehow could not accept that he was not able to control this behavior. It was not until I read the book “Driven to Distraction” that I started to understand the full implications of ADHD and what someone with it goes through on a daily basis. It took reading this book, and looking back on all the signs that were always there since he was a baby that I ignored or just did not know enough about, to finally came to the realization that my son has a “disability” - one that I need to teach myself to be patient with. Of course I still get exhausted by his energy and still do not understand much of the things he does. But I now allow myself tor relax a bit. 

 

We are currently at the point in our journey where we are deciding to medicate or not to medicate. Out of everything we have been faced with, this is by far proving to be the hardest decision I have ever had to make about the challenges my son has. I am one of those people that HATES meds, for myself and my family. I save meds for dire needs, so the thought of putting my son on such powerful drugs is heart-wrenching for me. I can not actually talk about it without tearing up. I talk to friends, doctors, read books, articles, FB posts. Anything and everything to hear it is ok! But my heart still tells me "Don’t do it."  Then I am torn inside when I read how “life changing” it has been for families and kids. I tell myself that maybe I owe it to him to give him the chance to try it? I tell myself if I could take just one thing off his plate for him, would I not? I lie in bed at night worrying, worrying about how his little body will take to the chemicals in his system, will they dull his spark? Will he be able to ever get off the meds? What about side effects? Long term use?

 

The questions go on and on, the what if’s go on even longer.....I know every family and every child is different as is their ADHD and the journey that they choose to take. I pray that we make the right choices and that our son knows that all this is for him! All we can do is make the best decisions at the time and keep their best interests in mind.

 

Life is full of challenges and it is how we face those challenges that makes us into the adults we all grow up to be.  Through all this I could care less if my son is a straight A student, I give two shits if he is a top-ranked athlete. What does matter to me is that he knows he is loved, that he knows the power of differences not only in himself but of everyone around him. I want him to grow up to be the kind of man that cares and respects not only himself but those around him! Someone that always is there to encourage and strengthen everyone around him! I will always be there to support him, advocate for him, and love him. All I can do is give him the tools and hope that he takes from it what he will. 

 

For everyone out there feeling frustrated and lost, know there are always answers and help.  Never be afraid or ashamed to ask for help and to be open and honest about what struggles you are facing. We are all in this together....knowledge is power!

 

Thank you for hearing my experience,

Loving mom to a wonderful boy

 

Notes to readers:

If you feel as though your family is going through a similar situation, please reach out to your pediatrician, school district and/or county board of health (if your child is under age 3.) 

 

Identifying information has been removed from this story.  If you know of a family similar to this, this is probably not their story as our contributors come from all over the region and other parts of the United States, as well.  If you are curious about a local family's struggles, ask the family directly to forward your own knowledge and understanding. 

 

 

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