A Long, Overdue Update

2016 was a year of discovery for our family.  First, we confirmed what we all already knew.  Poor Ben was surrounded by a bunch of #squirrel amazing people, who lack in executive functioning skills.  We’re amazingly creative, kind, compassionate people, but we may need you to redirect us a few times, because we get distracted along the way.  AND, we may talk your ear off.  đź™‚  Sydney, Eli, and their awesome mommy were all diagnosed with ADHD.  This diagnosis for myself was not surprising at all, especially looking back.  As we were completing forms for our kids, Ben laughed and asked me when I was having my evaluation.  I wasn’t at all offended.  I had seen myself in SO MANY of the questions.  And our kids pediatrician asked me straight out which parent had more of these tendencies.  She said in her experience it is not uncommon at all for her ADHD patients to have, you guessed it, an ADHD parent.

I would like to say that the past year was filled with support from everyone around us.  This is both true and untrue.  The people who matter— parents and grandparents, teachers, closest friends— all get it and support us.  However, the rest of the world starts their response with “Have you tried…?”  It has truly become my passion to learn as much about ADHD as possible and share it with everyone I know.  These medications, you know— the horrible, dreaded, avoided things you read about online— have saved my family.  They have allowed us to have dinner together.  For my children to participate in activities both in school, extracurricularly, and at home, that there is no way they could have done without it.  They have allowed my daughter to write her letters correctly instead of mirror-image backwards.  They have allowed my daughter to experience lights and sounds without wanting to cover her ears and cry.  They have allowed my son the ability to go to school and not be antagonized by his teachers.  He can sit right side up in his chair (un-medicated Eli is a bat– preferring to sit upside down.  Don’t ask, I have no idea!)  They have allowed me to get the thoughts from my head out of my mouth.  They have allowed me not to interrupt constantly in conversations.  They have allowed me to care for my patients without constantly forgetting things that are not safe for me to forget.  These medications are not “chemical babysitters.”  I promise you, my children still talk incessantly most of the time, still climb things, still argue, still get louder than they should.  BUT, they are also able to sit in their chairs (most of the time) when it’s expected, read a book, play a game, or fold a load of towels.  They don’t walk around like little zombies.  Again- they’re still loud and crazy, but just functional, loud and crazy people!  There are zero euphoric effects from the medication.  As a matter of fact, the only two differences I actually feel when take mine is that 1) Words don’t get stuck in my head and 2) I don’t want to nap constantly.

The last time I posted was over a year ago.  I’m sorry for that.  We’ve been super busy.  (Read above- not a chemical babysitter.  My kids were busy climbing things and doing crazy things that needed supervision!)  My last post focused on finding the right medication for our kiddos.  Fortunately, following our highly symptomatic start, we have had an uneventful medication history.  Both Eli and Sydney have been on Vyvanse for the last year, and done AH-MAZING.

Unfortunately, the dreaded side effect of suppressed appetite has become an issue for us this year.  We have been able to make a few lifestyle changes and keep our medicines on board and keep our kids from losing weight.  For one, we try to make sure they have a pretty big breakfast, and we’ve moved our usually early 5pm dinner to much later as the meds are wearing off.  That means the kiddos are usually roaming the kitchen as they eat, but they do clean their plates a lot of nights, so I’m picking my battles there!  I also find myself answering “No!  Oh wait, you want a snack?  Yes, go eat.”  I fear this will be a battle that we have to continuously monitor and keep a close eye on, but I think with the right modifications, we will be able to keep our kiddos at a healthy weight while also able to treat their ADHD as well.  (“I heard that if your kids eat x-y- and z, they won’t need meds.”  YES, we tried diet modifications for years actually before they started medication.  We saw MINIMAL difference– with the most difference seen eliminating Red Dye #40- which we still try to avoid.   Although diet plays a role, as it does with almost everything, if your child truly has ADHD, it is not going to fix them.)

My previous ADHD posts focused a lot more on Eli.  As a matter of fact, I’m not sure I had publicly told you guys about Sydney.  As mentioned above, two of the biggest victories for her I really wasn’t expecting.  The girl had been turning her letters backwards since she was 3.  Everyone kept telling me I wasn’t supposed to worry about it until she was 7- that this was normal.  But, I was worried.  She knew how to read and write her letters for years, but yet her papers continuously came home mirror-image backwards.  The medication for ADHD  slows her down enough to focus on writing it correctly.  This concern has disappeared for us.  The second huge win for her is that Sydney had been insanely sensory-sensitive.  In fact, I spent a long time not thinking she had ADHD and thinking she had sensory processing disorder.  Except, no pediatrician wanted to go there with me since it is a part of the autism spectrum and Sydney clearly demonstrated no autistic characteristics.  I felt so ignored and helpless in that arena.  My beautiful, “normal” daughter freaked out in a movie theatre.  When the climax music came on, she would bury her head into our shoulders and whisper in our ears how scared she was.  She would cover her ears with both hands during tap class, and then come out with tears in her eyes and tell me “It’s just so loud!”  These were not the symptoms I expected to improve with she started medicine that allowed her to remain in her seat at school and at dinner.  But, as it changes the way she processes sensory input, she now sees and hears lights and sounds like a “normal” person.  Not like someone who sees flashing, lightning like lights and hears sounds super amplified to the point of distress.  She can now fold a whole load of towels, instead of fighting me for 25 minutes about folding one.  She can now sit down and read a chapter book, and read for enjoyment.

Although Ben and I know without a shadow of a doubt that we have made the right decision for our children, we don’t get a lot of objective evidence of that.  The other day, as I was cleaning up breakfast trash from that morning, I noticed that Sydney’s medicine was with her trash (not because she intentionally didn’t take it, but #squirrel).  I quickly said a prayer that her day had gone ok.  That afternoon, I got an email from her teacher that just said “Hey!  I was just checking in to see if anything different had happened with Sydney’s routine, because she was bouncing off the walls today.”  HA- parenting Tigger is often how I have described my two amazing and crazy kiddos.  I smiled and disregarded the email, as I knew exactly what had “changed.”  The next week, I got Sydney’s graded papers from the week before, and ya’ll, they stopped me in my tracks.  On Wednesday, Sydney took a Math pre-test (which looks almost identical to the real test), and she made a 94.  On Friday, the day she forgot her medicine, she took the real test.  It didn’t look like the same kid’s handwriting.  And, she made a SEVENTY FOUR.  There were many, many skipped questions (as a matter of fact, that’s where all of her missed points went.  She didn’t get any incorrect, she just skipped a ton).  And at some point, she changed from using her pencil to a purple crayon.  I giggled as I imagined her taking her test and #squirrel, “What a pretty crayon!  I’m going to make my paper look prettier than it would if I just used this pencil.  I bet my teacher will love the purple writing!  She loves purple!”  Not often do parents of ADHD kids get before and afters of what their kids can do on and off medicine.  I will probably frame these tests.  When someone says “Have you tried…?,” I won’t even have to answer.  I’ll just show them the evidence.

Eli has continued to do well.  He struggled the most in school pre-medication.  Like, behavior problems as a 3-4 year old.  I fought a constant inner battle of Am I enabling or advocating??  I agonized over how he would make it through school.  I imagined I would likely have to quit work and homeschool this amazingly bright kid who seemed to be so misunderstood by his teachers!  He has excelled academically in 1st grade.  He is reading beautifully, and enjoys reading chapter books (melt my momma heart!).  He loves reading trivial facts about random things and learning about history, and does both often and independently.  He has had to take very few of his tests this year, because he makes 100s on the pre-tests earlier in the week.  He’s equal parts good at reading/language as he is at math/science.  Due to being preceived as the “bad kid” and his lack of spatial awareness (read, he might plow right through you- watch out!), one of my biggest concerns for him at the start of this school year was that he lagged behind socially.  I’m so excited about how far he’s come this year with that as well.  He’s made sweet friends and doing incredibly well all around!  Don’t think everything is perfect, or we don’t struggle, but, oh the improvement!!

I don’t write this to tell everyone all our business or try to influence anyone to do anything that they don’t want to do.  But, I also know how much of a struggle this is for many of you, who are struggling alone and without support.  (I know this, because you messaged me last year and told me about it!  You told me your in-laws, parents, friends all told you how bad medications are, despite how much your child struggles socially and academically.)  I just want to be a story you can remember about a family that didn’t have a horrible experience with medication.  A college educated mom and dad who made this choice for their kids.  A mom who has a master’s degree in nursing.  A family that functions oh.so.much better because of this choice.  This is a topic that I am passionate about and happy to talk about, so if you have any questions or want to chat, feel free to send me a message, a text, an email.

Take a minute to watch this amazing video.   It’s sad, true, and inspiring at the same time.

My crazy ADHD kiddos, I will walk beside you in the rain all of the days, and continue to see the amazing things you do, even if it doesn’t fit the mold!

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