“Your son was born without fear. Literally, without fear or inhibition”
“What?” I could hear the doctor giving me details but all I heard was the sentence above.
“It’s an extreme form of ADHD. In addition to the hyperactivity and attention deficit, your son seems (according to testing) to be almost incapable of feeling fear or heeding to inhibition the way a normal child would.”
Normal. That’s the only word that stood out at the time. My son wasn’t normal.
And like that, my whole world changed. The doctor proceeded to tell me that the reason it was important for me to understand the extremity of my sons condition was so that I could understand that although it is rare to have to medicate a child at his age (5 years old), we would be medically (legally) required to do so with Sam as he could be a danger himself without intending to be.
This started a roller-coaster ride of a journey that only parents of special needs children would understand. We tried 9 medications before finding one that wouldn’t make him sick. Before finding one that would ‘work’ and even then it took a combination of medicines to finally give my son a sense of normalcy that would never actually be normal.
Born 17 months apart, my youngest son often entertained himself while mom was preoccupied with his older brother’s journey. He never once complained, but then of course he couldn’t complain. He was four years old and still not really speaking. I found out shortly there-after that this would start a second emotional and medical journey for my family – one that would place my son on the Autism Spectrum.
“The good news is that he is on the high functioning side of the spectrum” said his doctor. Good news? Good news? None of it seemed like good news. The unexpected, unprovoked tantrums, the hyper sensitivity to sound, the difficulty explaining his needs or wants – going out to dinner or a movie in my home was almost a dare. We never knew what to expect.
The one thing no doctor tells you when they hand you these unexpected diagnoses for your children is that you’re personal journey as their parent is about to be immediately engulfed in the five stages of grief. You mourn the ‘normal’ children you thought you’d have. You mourn the things you assume your kids will miss out on – slumber parties, church camping trips, team sports, etc. I got stuck in the ‘anger’ and ‘depression’ stage of my grief – over and over….and over…and truthfully, I’m not sure I’m out of it yet. My sons are now 6 & 7 years old and every day is hard. Every day. And every day I feel more inadequate as a mother. Every day I feel more guilt. Did I do something wrong? Was it something I ate while pregnant? Was it my forgetting to take my vitamins? I literally spend at least an hour a day (I wish I was kidding) feeling a guilt that I can’t put into words. I spend that time beating myself up inside asking God what I did wrong. The other 23 hours of the day…well, every day is different. Some days are good. Some days are very, very hard. Some days are as close to perfect as we can hope for. But one thing is for sure – every day is different.
Why tell you this? Because for too long I kept this to myself. For too long, I’ve been sad and lonely and felt that I couldn’t tell anyone why. For too long I have felt ashamed, and I don’t any more. I feel overwhelmed but not ashamed.
Sam has ADHD but with his condition comes the inability to lie, comes a passion for the truth, comes an intensity for the things that interest him and a certainty that once he makes up his mind on a topic, NO ONE will sway him. He has an extremely high IQ and excels in just about everything. He’s a miniature adult who in his brief childhood has had to overcome more things than most adults but he makes overcoming those things seem easy – when I know they must be extremely hard. He’s strong and mature but every now and then he melts in my arms and reminds me that he’s my little boy – the one that made me a mom.
Andy has High-Functioning Autism Spectrum Disorder. He loves routine and excels when rules are clearly stated and will not deviate from them. He has an incredible ability to memorize and learn new things. He inherited my father’s charm and charisma. Everyone that meets Andy loves him instantly. He has a smile that lights up any room he’s in. He loves all things Disney and says he’s going to be John Lasseter (Creative Director of Disney/Pixar) when he grows up. Andy believes in magic and fairy tales, he loves make-believe and believes in wishes. Andy also believes that you should set aside time each day for snuggles with those you love and he’s an expert at being cuddly. He has the best sense of humor and hearing him laugh is the best part of my day – every day.
My faith reminds me that the Lord never gives us more than we can bear. I trust that. I believe in that. But that doesn’t mean it isn’t hard – very hard. But in so many ways we are incredibly blessed. I just sometimes need to be reminded of that.
Our blog is going through a re-branding and overall overhaul. Please be patient as there will be some exciting things to come!
Actor Sean Astin was my guest this week on my podcast “Erica Presents…” One of my favorite stars to interview, he’s such a great guy! We always have a blast chatting. You can listen here:
Today was terrifying. Sam’s first school race for charity. What was terrifying about it was that parents had to run too and my husband was not available! I psyched myself up, prayed for rain and headed to school!
Luckily for me, none of the other parents wanted to run so once we got there we all decided to be cheerleaders instead (huge sigh of relief!).
I wouldn’t have been able to keep up with Sam. He was fast! He ran 1.5 miles and came in second place in his class (actually in all of kinder). He was awarded a medal.
During the whole morning, Andy made himself at home in the class. He fit right in.
And he also finished the race. He ran all 1.5 miles just like his brother!
I have to admit, it was a wonderful day! It’s a memory I won’t soon forget.
The dreaming loop is perpetual. It’s not like a movie with closing credits. Your dreams will alter, they will change, they will be redirected, they will stall, they will at times be put on hold and yes, sometimes they even die….but guess what? Dreams are the babushka dolls of our mind. Where there’s been one, there’s another, and another and then another.
I have to admit, when I first heard of this my initial reaction was something like “WHAT??!! Wasn’t there a golf tournament available?!”. However, if he wanted to bring attention to the cause, he definitely got mine!
Actor Josh Henderson (“Dallas”) – give me a moment while I enjoy the picture – is raising $5000 for the Somaly Mam Foundation and is jumping out of a plane at 18,000 feet!
I was THRILLED to hear about this today:
Production has begun on the animated series “Miles From Tomorrowland,” a space adventure for preschoolers. Slated to debut in 2015 on Disney Junior channels and programming blocks around the world, the series follows the outer space voyages of young adventurer Miles and his family. The announcement was made today by Nancy Kanter, Senior Vice President, Original Programming and General Manager, Disney Junior Worldwide.
Kanter said, “We hope this series will influence a child’s interest in science and technology by introducing them at an early age to the exciting world of space exploration, how things work and what lies beyond the here and now.”
Set in outer space, the series charts the missions of the Callisto family – 7-year-old Miles, big sister Loretta and their scientist parents Phoebe and Leo, who work for the Tomorrowland Transit Authority. Each episode features two 11-minute adventure-filled stories as Miles and his family explore strange new worlds, taking young viewers and their families on a journey that fuels kids’ natural interest in the universe, and at the same time reminding them that what matters most is what lies closer to home – the family bond.
“Miles From Tomorrowland” is a production of Wild Canary in association with Disney Junior. Emmy-nominated Sascha Paladino (“Henry Hugglemonster,” “Ni Hao, Kai-lan”) is creator and executive producer and Emmy-nominated Paul Demeyer (“Duckman,” “Rugrats in Paris”) is director.
I love Vince Vaughn. He’s on my top five favorite actors list. I just look at his face and laugh! I’m excited to see this film and hope to bring you the review later this year.