I lie. I admit it. Call it over protection. Call it shielding. Call it self preservation. I have no words to describe the most awful hatred and violence happening around the world. There are no justifications, no purpose, or ways to make it better.
Tears pour down my cheeks while reading or thinking about those victims, refugees, immigrants and others who suffer at the hands of terrorists or other humans all around the world. Do I have to explain these events to Jake. A child who believes everything will be okay if we just treat others how we want to be treated. A child who perseverates on drama, big emotions and yucky stuff. A child who feels our emotions ten times deeper than your average bear. Our standard rule of thumb is "garbage in, garbage out"! Does he really need to know that other people join groups that like to end the lives of people just like us? Does he need to live in fear and add to his already paralyzing anxiety? How do you teach a literal thinker with limited comprehension ability, that some people think they have the right to kill people? How will it help him to know about hate groups like ISIS or KKK? He does need to know that there is awfulness in the world, but when's the time? How do you determine the age when he can "handle it"? I don't want to tell Jake. I don't think I will. For now, I will continue to read the paper in private, switch off the news and protect our Super Hero. I will always be hiding to cry.
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Very interesting developments lately, in the morals and social categories.
While we've always stressed humility, helping others and treating others with respect, we never really had spontaneous proof those messages were getting through. They sort of require the ability to see other's outside of yourself... wear each other's shoes. That is a huge challenge for folks with Autism. I'm not saying he does it everytime, but he totally is flexing his independent thinker muscle. We are thrilled, surprised and challenged. We can't really argue with our own message. See what I mean here in our latest Q & A! "They" say that turning teflon comes with age and maturity. I'm not saying a variety of things don't bother me, I still get hurt, but it doesn't last as long and will no longer control my days.
I'm on the cusp of "not giving a damn" and it's so freeing! During the last few months, Jake's schedule and advocacy opportunities have soared. He's owning his titles of Autism Ambassador for MCPD, and Champion of Change for USA! He's excited to help people, as is our entire family. (If you think about it, his speeches to police are helping all families... even yours... just think. about. it.) I am continually surprised by comments made to us, about us, eyeballs we draw in public and criticism that works its way back to us, but it no longer will be allowed to paralyze me (our family)! We will continue to do our presentations, work to save lives in the autism community, and scream it from the rooftops! This kid was diagnosed at 3 and not given much of a hopeful future at that time. Look at him now. He's done this work on his own. I didn't work my connections, Chris didn't work his. This pathway is Divinely created to save lives of Super Heroes and teach everyone acceptance. Thanks for allowing him to be the voice! I don't tolerate negativity in our lives and toxicity will be squashed, so don't even try. In the voice of my late mother-in-law "if you can't say anything nice, don't say anything at all." Thank you. I'll slide the soapbox back under the bed! For those playing along: two speeches this week at Montgomery County and Carroll County, MD! Just wrote a play-by-play of the whackiest week of our lives on the Faith, Hope and Miracles Page.
Please find the small novel, there! There are many, many days that I catch myself thinking about what life would be like without our Super Hero. How boring!!!
The laughs, love, and growth we all see everyday remind us of God in our midst. How hard Jake works to fit into conversations, learn the ins and outs of social thinking and forming relationships is amazing and exhausting at times. But we see God working in him. I tell people often, that I may have a cool job, and lots of really nice connections professionally and personally, but I do not have the power to construct this path we are walking with our Super Hero. The steps we take are placed before us like a yellow brick road, guiding us to more opportunities to help people learn and love those with Autism. We believe Jake was placed on Earth to do God's work and we are thrilled! Our advocacy pathway is Divinely Designed! While we pray about each step before jumping, we still sometimes jump blindly anyway. Out of our comfort zone but trusting in Greatness! Now, God has placed before us the chance to see/meet the most amazing Pope in Jake's lifetime. (I saw and loved JPII, but that was before Jake's time). We will take this opportunity and are eternally grateful to those that made it happen. I wondered what Jake really understood about the Pope so we decided to do a little Q & A! Here it is! Enjoy. We are still floating after a recent appearance on Fox5 TV News program Good Day DC! Jake was pretty nervous, as was I, but didn't let that get in the way of him being incredibly mature and well spoken. Amazingly, this kid was made to be behind the microphone! (as scary as that is)
We are honored to be a voice of those with autism in the DMV and hopefully the country. Our message is simple: Respect. Folks in uniform need to understand autism more, and friends with autism need to know they can trust police to help. Next, Jake heads to North Carolina to present to multiple sheriff's departments undergoing crisis training and then he'll help in training the Montgomery County Police Cadets in October. We are just getting started friends. This message of safety and consideration, Think Autism, needs to be nationwide. Here's the interview link! To bring Jake (and Jenn) to your area for a presentation, please click here send an email to us. Yes... this ranks right up there with talking about sex, babies, adoption and all that fun stuff, but this one is much more stinky.
Jake, and many other kids on the spectrum, just have poop problems. For some it truly is a gut/digestion issue, for others, like mine, he's stubborn! I'm so frustrated. He holds it for so long, currently 8 days, that I'm afraid to take him anywhere! He's buckled over in pain in public before and it kills me! He eats a ton of really great food, exercises a lot, but just doesn't have time for things of the poopy nature... the longer you wait, the harder it gets... literally and figuratively. Vacation? Forget it! Schedule change? no chance! Change is plans? Out of the question! So I decided to do the a Q & A and get to the root of poop problem! Read it in my latest Q & A! There's an explosion happening! All my emotions are erupting!
My heart is bursting, my mind is racing and I'm existing on both ends of my own spectrum at the same time! Pride is first, not to be boastful, but more amazed. The focus and energy it took for Jake to read his speech before a couple hundred people at Autism Night Out is remarkable. It was nearly 90 humid degrees, he talked on a microphone (police radio) he wasn't expecting, there were tons of people walking/pacing/yelling and his speech started 90 minutes after his scheduled bedtime. I think I held my breath for the entire 5 minutes while my eyes leaked down my cheeks... I was so awe-struck that when he finished and was jumping around in joy I was frozen. I didn't know what to do, my feet were stuck as I stood there crying. Then a man from the audience tapped my shoulder, "are you his mom?".... "Me? Yes!" "Then get up there and hug him!!!" Energy propelled me forward, up the stairs and into his arms. His excitement flooded my heart and overtook me. All the anxiety was released from my shoulders and we jumped around in front of hundreds of fellow super heroes! In the weeks leading up to this speech; the constant talking about police, recording and re-recording Jake's voice memos about what he wanted to say in his speech, the rewrites to make sure there wasn't a stray mark on the paper to distract his attention, all had led to this amazing moment. I keep thinking about the officers. In a time when the police are getting harsh headlines across the country, our kiddo was able to enlighten them while encouraging super hero families with his words. He speaks from the heart and pulls people in like no one I've ever seen. I'm starting to believe this won't be his last public appearance. The other fact of the matter is, this is just the beginning of a necessary global social transformation. Autism is here to stay! Super Heroes are not going anywhere and we need to change the mindset in America and around the world. Since we aren't changing, the neurotypicals are going to have to do the work! A line from Jake's speech states: we need to be respectful of everyone. Respect and embrace the differences among us. Be hopeful and encouraged about the future, a transformation is beginning. My eyes have dried now and I'm overwhelmed by a feeling of calm and hope. Jake clearly has the ability to change minds and impact people and we're not going to stop until everyone understands and honors The World According to Jake! I gotta run, as he totally just ran downstairs naked, holding a tooth he just yanked out. No lie!! Just another night on the ASD spectrum. Powerless.
Scared. Out of Control. While warmer weather brings more daylight to play and frolic it also brings more violent weather, less control and more fear swirling in Jake's super brain like its own cyclone. I struggled to get Jake in bed tonight as the words "tornado watch" and "severe thunderstorm warning" texted into his phone, came across the television, blasted from his favorite radio station. Jake has such fear about the weather and I cannot assure him that we won't lose power, have wind damage or otherwise. With the new and unpredictable global weather patterns, I don't know if anyone can predict it accurately and even that won't calm his internal storm. He sits up in his room, buried in his weighted blanket, just thinking about losing the house, sleeping in the basement, getting struck by lightening or worse, being picked up in a tornado. Such fear, anxiety and uncertainty. We all have it, but work to mask it. Tonight while I was teaching (in the basement studio) he texted me from his bedroom, "I'm worried something is going to happen to me." I didn't get the text until :30 minutes later. His words pierced my heart and his attempts to call me on facetime in his fear scrolled on my iPhone screen. "Missed Facetime Call (4)". Oh gosh, I failed him. I wasn't there when he felt scared. I ran up to his room, trying to stay calm but desperate for him not to see my emotions as well. While I usually have an answer for just about everything, or can fake it, I didn't have an answer this time. I can't control the weather. No, God is not mad at him. We are safe. While I'm thrilled he is able to verbalize his fear and seek out reassurance, his words can be so, just so. Open to calming suggestions on this one friends! ![]() It's a scary thought for many parents of kids with developmental differences: What does the future hold? Will he/she make enough money to support themselves? Will they be living off a "system" that is out of money already? I don't like to venture there in my brain either, but on some level I know I've got to prepare him and myself. I feel desperate to build or carve out a unique and lucrative future for him. We try to take every opportunity that comes our way. We try out construction experiments, cleaning the church, using public transportation, visiting construction sites, playing restaurant at home, doing laundry, yard work, cooking and trash collection etc... to try and see where the interests and talents lie. It wasn't until recently that Jake mentioned he wanted to be a model "like the guy in the Kohl's ads". At first I laughed, knowing the cut-throat world modeling can be, then I looked at his nearly perfect features... not mine.... no genetic link thank goodness! He's got the olive skin, the symmetrical face, the dark eyes and he's tall, really tall already. Then pondered, he loves to work out, exercise calms him. He might be able to make this work just by how he's wired! Then my brain took another hop... this could be perfect. What other job could a person have where they don't have to read or do math? Perfecto... stand there and look good Jake, smile, dance and stay in shape, be a diva (not hard, trust me) ..... and let's see what we get! Three job interviews and one professional photoshoot later and we're trying our hand with a talent agency. It'll probably turn out to be a scam or something, but we're giving it a whirl and seeing what the possibilities are. The photographer seemed to love working with him and Jake had a blast. Another friend said his look "speaks to the camera" whatever that means. So we'll try for a year, make some connections, get some good head shots and see what the future holds. The photos above were taken by the amazing photographer Tim Colburn in Virginia! |
One Minute Miracle Archives
May 2020
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