Category Archives: speech-language pathology
For 14 1/2 years, I carried a loaded trunk full of toys and materials for speech-language therapy home visits. The rotation was constant. With the exception of family trips to the mall, zoo and grandma and grandpa’s house, the stuff was always there. Neighing horses and beeping timers sounded at every bump.
But now, once and for all, it’s time to unload the trunk. It’s time to bring it back in. It’s time to bid farewell to friends who stood the test of time. The great ones, the loved ones, the classics, the ones that worked for every kid regardless of their disorder or delay. It’s time to say good bye.
Dearest toys and materials, I’ve known you all too well. What works, what doesn’t, the words I’ll need, the response I’ll receive. I’ve loved you, grown fond of you, and relied on you. It’s been a good ride, friends, but it’s time to say good bye. Perhaps later we’ll play. Perhaps later we’ll learn together. Perhaps later we’ll grow together. But for now? You’re heading back to the closet.
Hopping Frogs, you always served me well a minute or two. Hop goes the frog across to the log. Green frog or pink frog, which do you choose? Mom’s turn or Sam’s turn, which will it be?
Stringing fruit (a.k.a. beads disguised as fruit), you’ve seen your days. The frayed edges of your box prove you were well loved. Yes, your fruit shape distinguished you as most clever, most interesting to toddlers and preschoolers. Swooshing down the line to mom or dad, and swaying in the breeze were your specialities.
Oh train. I can’t bear to throw you away. You were tried and true for so many years. Your $10 price tag was long ago worth it. And now, you barely move. New batteries won’t do a thing for you, Mr. Train. I’m so sorry. I’m not sure what to do. So there you go, back in your closet where you’re free to stay a lil’ while longer.
Sweet Nestle Quik boxes, I never really knew your name. Who knew you’d be a hit?! The kids did, that’s for sure. Pull, pull. Up, up. Then shake those eggs and wave those scarves. Your simplicity was golden. Your fray-edged ribbons show your wear. Good bye, dear one. Good bye.
Seek-n-Find puzzle, you were amazing. Absolutely amazing! You were, without a doubt, a tried and true. Your box is held together with layers of clear packing tape. I put together your edges, corners, and middle pieces countless times. Out of your 24 pieces, only 1 wasn’t optimal for speech and language. That means you’re reliable, Mr. Puzzle. You’re dandy. There’s no way I’m getting rid of you.
Dear picture cards, this is just the beginning of your collection. How many times we flipped through, set up, chose which ones we were going to do. I have a hunch you’re becoming obsolete, but to me, you made life complete. You’re as good as a guarantee to me. Pair you with any game, and we are good to go.
Magnetic ice cream and cutting fruit and veggies, you’re awesome, a wooden delight for all ages. You were so useful, I bought four versions of your Melissa & Doug goodness. Thank you for the days of velcro-ing, cutting, and velcro-ing some more.
Lids ‘n Lizards, Jeepers Peepers, and Grammar Gumballs. Who knew you’d be so popular? Who would’ve ever guessed? Super Duper knew what they were doing when they made you. Your catchy rhyme-y names suggest your creators were speech therapists, proving simple + clever is definitely best.
Oh tried and true board games. You’re my faves. Your boxes are torn, taped and ripped to shreds. Zingo, Don’t Break the Ice, Caribou and Counting Cakes. We’ll never forget you, Bunny Hop. You were the fave of the faves, the best of all, my most prized possession as a speech therapist, the toy that worked for everyone, every time. Those bunnies, they never stopped surprising. Rest in peace for now, dear friends. You played well.
Little bears, oh how I loved and hated you. One thing’s for sure, you made my job a lot easier when it came to following directions. Who knew tiny colored bears would do the trick? But you ticked me off more than once when you fell out of the trunk onto the icy, snowy ground and spilled all over driveways. Oh, how you ticked me off. I knew that was it, once and for all, when that box of yours broke into tiny pieces, strewn all over a driveway on the coldest of winter days. Oh, how I hated you then. I didn’t hold my tongue as well as I should have when I went into that house. “Oh, what a blessing it is for you to come so families don’t have to travel in this cold.” But my mind kept spiraling back to that icy driveway and how naughty you’d been just minutes ago.
You’re a little bruised, too, gears. Your corner broke off when you slipped out of the trunk onto the cold, icy driveway. My use of you waxed and waned, but only because you were so good. I used you so much that I fatigued of you. I simply had to get a break. I didn’t bring you much those final days. Your C batteries were all used up. I intended to refill you for sweet “T’s” play, but never got you back for that one last day.
Oh, Fisher Price Loving Family and Snap ‘n Play babies, dogs and dolls. I bought up every Snap ‘n Play before you left stores. You were so good, oh so good. Every mama and grandma wanted to know where I got you. Who knew you were a great gift, too?! But I was never sure of you, Fisher Price Loving Family. You were hit or miss, never in-between. So you came out and stayed to play, or got put away right away. Good bye friends, I’ll bring you back out for the grandkids.
Random bag of trinkets, nobody told me about you in grad school! Who knew these tiny treasures could entertain for 45 or 60 minutes? I wanted to buy more of you on eBay, but never got to it. I just kept on collecting you, one by one, until you added up to two bags full. I’ll never forget the seconds of fun you brought to the tabletop.
And then there’s you, oh you. Connect 4. Deluxe Version. How many times did we play? You never got old, you never wore thin. Never. Ever. We could’ve played all day. You served as a distraction between bouts of super hard work, a reminder that we’re human, a reminder that kids who have speech and language delays possess certain brilliance beyond measure of standardized tests. Connect 4, you’re perhaps the most memorable, impactful of all games, toys, and materials. Because you showed me that these special kiddos are more than their speech, more than their language. They’re human. They want to win the game of life, too.
He won nearly every time. I had to concentrate hard to win. It was clear he was genius with his hands and just about anything visual-spatial.
That last day, I lifted Connect 4 out of the bag and sat it on the table along with some picture cards.
We were about to start playing and drilling one last time, but tears welled big in my eyes.
I told him I was proud. He’d worked so hard. He’d come so far. We’d done this together.
Then, after we played, after we drilled, after we worked hard all over again…
Back in the bag you went, back in the trunk, then back in the closet.
I packed you all nice and tight. I’m closing the closet. For now, good night.
With gratitude and love,
To All the Dads, Mamas, Siblings & Special Ones:
You’re on my heart this week. You’re on my mind.
For 14 1/2 years, I’ve visited your homes, entered your sacred spaces, assessed and treated your special little ones. My days as a speech-language therapist are coming to an end. At least for now, maybe forever. Only God knows.
But you, you will never leave my heart.
You’ve made a lasting impression. You’ve changed who I am. You’ve molded me into a better person. You’ve altered my heart for humanity in a way no one else could.
You see, you are special. You are like no other.
Special dads, I’ve seen you. All the varieties of you. The worker dad. The business dad. The hands on, loves like a mama dad. The dad who’s not sure what to think. The dad who’s not sure what to do. The dad who knows exactly what to do. The dad whose eyes tell it all. The dad who knows his son, his daughter’s like no other. The dad who looks his child in the face and sees it all. And loves anyway. Even when it’s hard. Even when being a dad’s nothing like you expected it to be. I see you longing to do something, anything to help. I see you doing all you can, everything you can. I see you working hard for your family, with your family, providing stability and hope, even when the needs seem endless. I’ve seen you, dear dad, you’re a light, a strong presence in your household. Your child needs you. Your child thrives on your presence. You might not think so, but you know just what to do with that special child of yours. You are man, yes man. Still man, even though life’s thrown you a curve ball. Man, even more so. Man, because you stay, you stick with it, you do what’s right and honorable. And you love your family quietly, humbly. Because you know life’s course can change in an instant. Yes, you are a special dad. I see you. Thank you for who you are.
Special mamas, I’ve seen you. Take heart, mama. Take heart. You’re unique. You’re extraordinary. There’s no one quite like you, mama. What a lover you are. You love to no end. You fix boo boos and kiss cheeks, burp and clean spilled milk, pack lunches, transport and balance work and home life like any other mama. But you manage much more, mama. Therapies and visual schedules, meds and IEPs, evaluation reports and flash cards, you’ve seen it all now, haven’t you mama? You never knew motherhood would be quite like this. You wonder when your mama bear heart will be at peace, at ease with this special one’s needs you’ve been entrusted. Mama, you’re so good, you don’t even know how good you are. You’ve cried tears and held them back. You’ve worked like a dog. You’ve pushed and pulled back. You’ve prodded and been patient. You’ve known when hugs are today’s prescription. And you’ve known when hugs are an escape from the work ahead. Mama, you’ve done everything you can. Mama, you’re doing great. Mama, you are awesome, irreplaceable. Take care, mama. Make sure you’re doing something for you. Take care, mama, for you’re the cornerstone of your family’s heart and soul. Mama, you’re special. I see you. Thank you for who you are.
Special siblings, I’ve seen you. Oh, how I’ve seen you. I’ve seen you in the corner, on the side, by the wayside. I’ve seen you waiting, wishing to enter in. I’ve seen you play, and I’ve seen you disappear. I’ve seen you ask and be turned away. I’ve seen your brilliance and your beauty. I’ve seen every bit of your potential flash before me. Don’t forget you’re special, too, dear one. I’ve seen your heart shine bright on the darkest of days. I’ve seen you help and teach and reach out and love unconditionally, like only a sibling of a special knows how to do. I know your heart, special sibling. I understand your position. Who are you? What’s unique about you? What makes you tick and light up? What causes you to keep on keeping on when everything feels impossible and forever? Cling to those truths, dear sibling. The years may be long, or they may be short. Whatever your truth ends up being, shine your light, special sibling. Your life is precious. Your life has purpose. There’s no mistake about your place. There’s a reason you’re there, right there, with that family of yours. Let your voice be heard, special sibling, let your place and your purpose be known. And don’t forget, you’re not alone. Yes, most definitely yes, you’re special. I see you siblings. Thank you for who you are.
Special ones, I’ve seen you. Oh yes, I’ve seen you. Consider your position an honor. You teach us how to be gentler, kinder, more respectful and honoring of diversity in a world that feels monotone at times. You teach us how to be patient and tender, loving beyond measure. You know what it’s like to be poked and prodded, tested, drilled and worked hard. You’re constantly striving to live up to the measuring stick of “normal,” “typical” and “neurotypical,” but truth be told, you’re anything but typical. There’s no need to measure up, special ones. You’re you. Work hard, yes. Do what you can, yes. Exceed their expectations, yes. Listen to your dads and mamas, your special siblings and teachers, your therapists and your doctors, but know this, special ones. God sent you, created you just as you are, to reveal love, to show grace, to bestow blessing. You’re an angel on earth, here for reasons most can’t fathom. You’re more than a number, score or position on any standardized chart. You’re a treasure, a gem, one to be remembered for all the ages. Forgive us if we neglect your humanity. Forgive us if we ignore your limits. Forgive us if we don’t know, if we don’t quite understand what it is you need. You are accepted, as you are. You’re loved, whether you progress or don’t progress at all. Whether you eventually achieve scores “within normal limits” or continue presenting with “significant delays,” you’re deemed worthy. Because you are worthy. Yes, you are special. I see you. Thank you for who you are.
Dear special family, I’ve seen you. We’ve worked hard together, we’ve loved together, we’ve faced trials and tribulations. We’ve sat in silence, laughed and cried with joy, wondered and wandered a time or two. We’ve known and we’ve not known at all. We’ve succeeded and we’ve missed the mark. We’ve fought for what’s best, for what’s right, for what’s needed and necessary. We’ve made calls, referrals and investigations into the causes of these needs. We’ve drilled and done the same things over and over and over again. It’s a fight worth fighting. It’s a cause worthy of care. It’s a life worth living. Every bit of our work together has been worth it.
But now, yes now, it’s time to say good bye. It’s time to set your family free to someone else who will do the therapy.
I may return, I may not. But this you must know. My decision’s not been easy. My decision’s not been light. My heart’s heavy and light all at once this week. For I’m leaving you, but following the call God has on my life to write, photograph, live, love and be an advocate for the voiceless of this world.
This, I promise. I will not leave you. I will not forsake you. I will not forget you and your special family. I will be a voice for you. I will help the world see your beauty for what it is – pure, raw, lovely, extravagantly and exquisitely unique.
What God has in store for the days ahead, I’m not exactly sure. But I know one thing for sure. I will continue to be your advocate. From this day forward. You can count on me to see you, to remember you, to acknowledge you and constantly remark that you are created beautiful, wholly unique, special like no other.
Thank you, special family.
Your place in my heart is permanent and prominent. Your story, it’s a beautiful treasure I honor like no other.
NOTE: The two beautiful photographs of the girl who has down syndrome are courtesy of Andrea’s Photography on Flickr’s Creative Commons.
God began calling me to write all the way back to 2003. But I didn’t launch my blog until July 2012.
I wasn’t blind and deaf to the call at all. I was busy working as a speech therapist, buying houses, taking vacations, and having babies with my college sweetheart. I was busy living the American Dream.
The call to write continued. It was quiet. Nobody knew but me. But God was persistent.
After many years of feeling called, I began to wonder if I was imagining things, if I was daydreaming crazy visions out of thin air. To remind myself of the events I considered signs of the call, I combed through old journals and pieced together proof through the years. It was obvious. A story had unfolded. So I put it together tidy and titled it the only way I knew how.
A Possible Calling.
I’ve debated this calling. I’ve doubted it. Believe me. It’s been a journey.
I’ve sought wise counsel. I’ve prayed. I’ve thought, then thought some more. And bless his soul, I’ve talked to my husband about it hundreds of times.
I have a tendency to be a people pleaser, to do what’s “right” and “good” by all-American girl-next-door standards, so ultimately, I had to step away from all the voices, be still, and sit with God.
Yes, it was then that I knew. This is what God has planned for my life. This is what He wants me to do. This isn’t the American Dream, it’s a God-Sized Dream. All was good between me and God. He’d called me to write, and now, I would write even more. The dream was ready to take flight.
But making dreams reality hasn’t been a walk in the breeze. I could have given up by now, I could have given in. I could’ve said forget it, because all this wonder and worry isn’t worth it a bit. There’s no degree, no guarantee, no paved path, no pay for this way, at least for today.
When in doubt, I returned to the peace I experienced between me and God. I couldn’t ignore that. I couldn’t pretend those pieces of proof didn’t exist. I couldn’t disregard every pull of my heart for the last 12 years. I couldn’t deny this feeling I was supposed to transform my work life completely.
I knew very clearly, all the way back to August 2012, that changes were coming. My husband and I began discussing options. But it wasn’t until August 22, 2014, that we made our final decision.
My last day of work as speech-language pathologist will be December 18, 2014.
I realize that statement is dramatic, feels permanent, and might concern people who believe I’m wasting my master’s degree and 14 1/2 years of on-the-job experience. Here’s what I want you to know. I’ve pondered each word of this post carefully. My husband and I have thought through this decision extensively and exhaustively. Rest assured. There’s always a chance I’ll return to speech therapy in the future. This may end up being a sabbatical. Or it may end up being permanent, an early retirement from speech therapy. Time will tell.
Here’s what I know for sure.
I’ve been working as a speech therapist for 14 1/2 years. I strongly believe that my work as a speech therapist has been training grounds for what’s to come. Nothing has been wasted. I’ve served my patients and families well, to the best of my ability. I’ve given them my 100%. We’ve worked hard together, we’ve loved together, we’ve been patient together, and we’ve made progress together. I’m grateful beyond measure. And I’ve learned oh so many things.
Who’s to say I won’t be called back to speech therapy someday?
But now, it’s time to take what I’ve learned and apply it elsewhere.
This is my life. Part two.
HOME AND FAMILY
I’ve never considered myself a full-time stay-at-home mom type. I’ve worked the whole range of 1-5 days per week since we had our first child 12 years ago. But now, I’ll be dedicating more time to our home and family. I’d like to declutter and get life in order. I need whitespace to breath, be and create. I want to live more freely and love more deeply. I want hot homemade dinners, chocolate chip cookies after school, and summers free to roam with the kids while they’re still somewhat small. I want to hear my husband out when he comes home from work instead of tuning everything out because I’m so stressed out from the day. It’s time to inch my way through the ridiculously high stacks of books in our bedroom, and maybe I’ll finally have time to check out the women’s bible study I pass every Thursday morning on my way to work. I’d like to keep an even closer eye on our family finances. And I’d love to invest in friendship because it’s been on the back burner far too long.
SPECIAL NEEDS PHOTOGRAPHY
In early June, it occurred to me that I’ve LOVED taking pictures my whole life, but constantly stuffed the dream of becoming a photographer down deep. So I’m pursuing this passion to the next level. I purchased my dream camera in September. Its capabilities are beyond my current abilities, people. And that’s a good thing. That’s what I wanted. I wanted a camera I can grow into. So I’m going to EXPLORE special needs photography. I’d like to use the skills I’ve gained in 14 1/2 years of speech therapy and take them to the next level. Instead of focusing on fixing deficits, I’d like to focus on the inherent beauty of special needs. I’m skilled at developing rapport quickly, and I’m comfortable in just about any family’s home. So I’d like to give this a whirl. My short-term goal is to give away a bunch of FREE special needs photo shoots so I can gain experience, build a portfolio of work, and determine if a part-time business is viable.
Writing will become my primary work focus. I’m currently publishing blog posts at a rate of 2x/week. My publishing frequency will likely increase to 3x/week by early to mid-2015. In September, I launched a new long-term vision for my blog. I’ll be writing content even tighter within that vision. I’d like to connect deeper with other writers, and I’d like to attend more local and national writing conferences as finances and schedules allow. I’ve been asked to lead and join writing groups locally and online, I’ve been encouraged to write books, and I’ve crossed paths with a few people who have indicated interest in partnering for special projects. Ultimately, I’d like to use my gift of writing to advocate for people whose voices need to be heard more loudly, and to encourage others to live out their purpose.
So these are my dreams.
This is my life. Part two.
From here on out, I’m leaving a lot more room for God to work. There’s no specific path I can take that will ensure success at home, with my family, in writing or photography. There’s nothing I can do to make any of these things happen the way I’ve envisioned. All I can do is trust God’s leading me in the right direction, use my gifts to the best of my ability, wait, and trust that in the end, it will all piece together into a beautiful life story.
This is the biggest leap of faith I’ve ever taken, by a landslide.
I’m living with the end in mind. So while part of me is scared to death because this is not perfect or certain, expected or known, a bigger part of me is excited and humbled beyond belief. Because I know I won’t regret this. I know it’s going to grow my faith by leaps and bounds. And I know God’s going to prove He’s greater than any dream I ever imagined.
So here I am. On the edge of something new. My part two.
This marks week three of Divine In The Daily’s 5-week guest post series titled Special Mamas! Every Wednesday in May, we’re honoring real-life mamas who have big hearts and stand bold and courageous in their unique mothering roles.
Two weeks ago, Jennifer Camp, blogger at You Are My Girls and mother of three from Northern California, kicked off our series with a guest post titled When Mothers Cry Rescue.
Last week, Tamara, mother of seven, was honored with a family photo session and beautiful tribute from her husband and children in this post!
This week, we continue the series with a guest post from the mama of a five-year-old boy who has autism. I met her three years ago and have followed her closely online since. Being a speech-language pathologist, I greatly admire the authenticity and bravery she demonstrates as she faces daily joys and challenges of raising a son with autism. I invited this mama to guest post anonymously because I wanted to grant her complete freedom to open her heart and share her journey without fear.
This mama once held a blog that was converted to a simple Facebook page called MNAutismMom. Click “Like” if you would like to follow her journey. If you have questions or comments for this mama, you are more than welcome to place a comment at the end of this blog post.
IN THE BEGINNING
Before I had my first and only son, I imagined that a baby was just one more thing on my “to-do” list.
After the exhausting activity of labor, I started to devour my baby books like I was cramming for some sort of exam. I was freaking out. I realized I didn’t know how to change a diaper and didn’t have a clue about a baby’s feeding schedule. I was happy to be naïve up until the day he was born, but I was unprepared for the test on June 13, 2007.
Of course, raising a child is not a test, but a non-stop life journey that has completely altered my world which has been just as hard as it has been good. And now I sound like a cliché. But, that’s the thing. He is a hard child to raise. Life is hard at times. My life had its challenges before this little boy entered the picture, but nothing other than my teaching degree prepared me for a moderately, classic form of autism in my son. And my teaching degree only helped me see the signs of his autism…nothing more.
Unlike most sane people, I did worry about autism before he was born (though I am learning that might not be as unusual as I thought, especially amongst teachers). I remember discussing these concerns with my mother and my friends.
My son didn’t hit any of his milestones on time and by 12 months I was pretty much convinced, but didn’t want to utter the word “autism” to the doctors in case I was wrong, in case I was inserting ideas into their head wrongly, in case I would be written off.
By 22 months, I had a team of people that created a 12+ page document confirming my fears and my Google searches. I cried. I grieved for years and my husband threw up on the side of Highway 494 the day we were told the diagnosis.
Sometimes people want to know how I knew so early. They don’t understand how I got him a diagnosis so early in life, but it’s not that hard to see when your child makes limited eye contact, finds light more interesting than people and isn’t doing most of what a typical child would do.
It really wasn’t hard to see his autism, but the people who didn’t want to see it, didn’t. Every single relationship was damaged and is still in repair. No one says anything appropriate to a special needs parent. My skin, so thin, my emotions transparent. I couldn’t hide my feelings. It was all I could think about initially.
It took me years to figure out that most people will not be able to handle conversations about autism in general (especially when you are grieving and initially finding out). For example, a neighbor would tell me how “normal” his behaviors were and I wouldn’t know to respond. I would read potty training books and my dad would tell me how I was worrying unnecessarily and that I had to learn how to just enjoy my baby. And my relationship with my sister was ultimately one of the most strained because she was always my soft place to fall before my child was born. I eventually just stopped talking to her about him if I could, resorting to only telling her the progress – you know, the good stuff and even that somehow hurt me. Her response? Something about how one day he might get to live in a group home. Wow, thanks.
Just writing this down makes me tear up. There are no social guidelines for telling people about a child’s autism diagnosis. Maybe they are in their own shock and can’t recognize the pain of the parent’s. And that’s the thing, it’s my pain, not my child’s. He doesn’t know he has autism. The pain is all in me. I don’t expect the world to know what to say, how to react, but I had to learn that the hard way.
Sometimes it’s actually the people you don’t know that will be your soft place. The applied behavior analysts (ABA), speech, occupational and physical therapists will be the most supportive, loving and understanding people in your adult life. And no one tells you that all of those other people you thought you knew, will have no idea what to say or do. There will be no casseroles for the grieving mothers and fathers. There will be little said that is appropriate or comforting.
And then, one day, you forgive them. The anger flows over and you realize they didn’t know better.
You learn who to trust.
You learn who to confront and when.
You learn who to let go of completely and move on.
Because he is YOUR CHILD. The one you have been called to love and nurture.
Words do hurt, but the child that people can’t see has special needs, WILL show them over time who he is and is not. And you learn to stop defending your point of view because unfortunately you no longer have to.
In a month, my baby turns 6. This is the first birthday that isn’t making me cringe. The other birthdays were so painful. A reminder of all the milestones he couldn’t accomplish yet. All of the hard work we had left ahead. The fear of the future. What does it all mean?
And as he leaves 5 behind, it was the hardest year to date. I realized at some point, that when he was first diagnosed it was about me. Completely selfish…my life and yes, his too. Autism = language and social deficits, distinct interest in very particular things that override the ability to work on and learn other skills.
When he was little he would hang on me. There was no independence. He recently stopped being fed by adults. He would fall apart, scream, and cry if he wasn’t getting what he wanted. Realize this isn’t a spoiled child, but a child that can’t regulate feelings, can’t communicate. I babied him and it wasn’t until the last 6 months that he started doing more and more on his own. Just this week, I observed him urinate without an adult standing over him and he’s even going without some prompting! It’s been 6 years of having a very dependent child. The years of not being able to make dinner or turn my back on him have just recently become past memories. Speech has finally crept in. He can now answer choice questions “do you want red or blue?” He pretends to talk on the phone and jabbers away despite it not being actual words yet. He amazes me.
But there is still another side we are currently dealing with on a daily basis, which is 5-years-old, the year of self-injury. Two plus years ago it started as a head nod. It wasn’t typical, but it wasn’t a problem either. Last spring it started in the car. He just decided he didn’t like our car rides to and from school and he started to head whip forward, causing a cracking sound.
The doctors didn’t agree – stim, tic? Does it matter? Does he need meds? We started to take him to a chiropractor for self-inflicted whiplash. We started him on medicine for kids with Tourettes, which didn’t work; we even changed his day therapy program to lessen the car ride.
Whiplash eventually led to face slapping, which intensified to the point the school was demanding we get additional supports at home. We were in over our head. “You need more for him, we can’t help you the way you need,” they said. The speech therapist initiated feeding therapy and cancelled it within a month due to his behaviors. It was out of control.
And right when it was over my ability to cope, I started to unravel. No control. Fears overwhelmed me. What happens to your child if you can’t deal? Christmas was painful. He continually hit himself. No logic. I got a nice chunk of time off for winter and it was horrible. Neurology appointments, another EEG, no answers. How do we live with a child that hits himself over and over again? It’s not painful to watch. It’s unbearable.
It all stopped on January 1.
Two months respite.
And then it was back.
And it got worse, but different. He got a cold or flu. It wasn’t a big deal as far as anyone could observe. It lasted 2 weeks. He lost 7-8 lbs. I thought watching my baby whip his head as hard as he could was intense, but the days he stopped eating were some of the hardest in my life. My husband and I snap at each other hard during these days. Everything holds together by a string. I go to work to forget my life at home is harder than I can handle. I email his school daily to see what approaches, interventions are working or are not. I would take him to the doctor 5 times in 2 weeks. No answers. Blood drawn, hospitalization around the corner, his little skeletal system showing so clearly. Could my son starve himself to death? Should I still be going into work? How long will this last?
And then it just hit me. Stop trying to give him his normal, preferred foods and get him kid approved junk food. And so I did. I gave him the choice of anything. He chose chocolate pudding and I fed him. I was victorious. He moved on to a Pop Tart, Little Debbie cakes, cookies, cake, and ice cream. He didn’t stop. He tried nearly half of the $100 worth of junk food I had just acquired from Target. After the second food, he was finally feeding himself without spitting or injuring himself.
And ever since then, he gained the weight back and we just remember those days as the hardest to date. Luckily for us, not a continuous issue. Just a strange detour on the journey.
WHAT I KNOW
I am relieved, but it’s not over. This new chapter of being 6-years-old begins with a new slew of therapists helping us outside of his normal therapy hours. His head bobbing has turned into a fist-to-chin; he is basically punching himself. His little chin is red and irritated from constant hitting. His knuckles are red too.
It’s painful to watch, and the complexity of this behavior is beyond a regular ole’ parent’s ability. I will make the sacrifices I need to within my marriage, career and social life if that means he can have a safe and happy life.
Autism has many lessons that are just as positive as they are hard. Not only did I learn early in his life that we only have so much control, but we also can’t take things for granted. The biggest lesson learned is how some children never learn to take care of themselves, dependent on others for bathroom needs, dressing and learning basic academic skills. Despite being a teacher, I have learned about a world of individuals I would have frankly not known to exist.
As I learned about these things, the fear grew. Would my child ever talk to us? Have friends? Make his own meals? Graduate from diapers? What if he lives with me forever? Have a job? What school will he go to?
How could I possibly care that my neighbor is going on and on about how her 2-year-old isn’t potty trained when she hasn’t noticed my 5-year-old standing there in a diaper? This is just a small thing. Rude, but forgivable. I want to scream ”BUT HE WILL BE POTTY TRAINED ONE DAY! What if my child never gets out of DIAPERS?”
But, that’s the thing. These things people say to me are just a small part of the bigger picture. I am worried endlessly with a list of what-ifs and those questions burned in my head. But some of the what-ifs and questions have been replaced with beauties I failed at the beginning to know were ahead.
No matter what my son accomplishes, when he accomplishes something I am AMAZED.
I didn’t know that when he first spoke a word it would feel like a MIRACLE. It wouldn’t be kind of cool. It wouldn’t be like – wow, that’s neat. It would feel like my mind was being blown and that it was all going to be ok.
When he walked up to the toilet for the first time this week, lifted the seat and urinated on his own without reinforcement or prompting – it was INSANE. There aren’t words for realizing your son might not live his teen and adult years in diapers.
When he learned how to navigate the You Tube app and play with a preferred toy without an adult it was AMAZING.
The day he stopped asking people to feed him (recently) was UNBELIEVABLE.
My son didn’t willingly crawl until he was 4. His first words were ABC and I love you. He can take his glasses on and off without help, and shows he understands what we say despite being able to speak conversationally. He calls me mommy, sometimes.
There is nothing on this earth that has ever given me joy like watching my son accomplish goals we wanted for him years ago. The lows may be low. They may be lower than non-special needs parents can comprehend or care to know. But I get a gift on the other side of this parenting journey that some will never understand too. For that, no matter how hard it might get, it sure makes those highs even higher. I do wish I could share what that feels like. And I can’t wait to see what else is in store for the chapters ahead.
I love you sweetheart.
Today it is my pleasure to introduce you to a sweet girl I see for speech-language therapy. Although I’m unable to show her face or reveal her name because of privacy laws, something that occurred during our therapy session yesterday holds a bit of truth for us all. I’m so grateful her mom has given me permission to share this story here today.
Psychology notes that we are able to identify dominant personality traits in others when we possess those traits ourselves. If that’s true, then I admit I spotted myself in this little girl from the very start. Confident and bold, loving and sweet, a very hard worker, loves order, and likes to do things her way. A Type A in the making, her mom and I have agreed! I just love this little girl. Sure we butt heads once in a while, but there’s no doubt we work hard together to accomplish a lot in a short amount of time.
So yesterday, when I saw her line up that pile of cards on her lap and get them all just so, in order, I realized once again that our personalities are just as much innate as they are formed. The only truth that makes sense to me when I see a little 4-year-old ordering a pile of cards just so is that she was born that way…she’s an organizer and likes order, and it’s just who she is. There was peace in that observation, an acceptance of myself and that little girl for who we are at our core.
We moved along with the stories on our cards. Moments passed, and before I knew it, this little girl had taken off her boot.
And out from that boot came a construction paper picture!
A work of art on one side, and her name in big bold letters on the other side. All on a piece of bright red paper.
I asked this little girl, what is a picture doing folded up in her boot? She explained she does this every day! Her teachers say she can only color with crayons, but she uses pencils and crayons. She hides the pictures in her boot so her teachers can’t see.
I look closely at both sides, tell her what beautiful pictures they are, and try to get some more clarity as to why she feels she needs to hide these beautiful pictures in her boots (I know, a little diversion from what you might consider traditional speech therapy, but we were practicing all of our sounds during this whole interaction and she was very proud to share her creation!). She showed me how she folded the picture up all pretty, how she could make it into a bird and fly. Paper wings flapping in the air, “see, it flies!”
Next thing I knew, she said it was time to put it back. She folded it up nicely. I took it and placed it in the back of the boot where her heel would rest, assuming that was the most logical place for a piece of paper in a boot?! “NO,” she said without reservation, “it goes on the bottom!” She put it in the very bottom of the boot, tucked away deep, hidden away nice and flat.
I have yet to discover whether there was truth in her statement that the teachers only allow the children to use crayons, or whether they also allow pencil drawings. But the truth regarding pencils and crayons matters very little as far as I’m concerned.
In fact, what moved me to post this story was the fact that this little girl felt she needed to keep her creation hidden. Clearly so proud. She knew everything about that creation. She knew it could fly and how to fold it perfectly so it would fit in the boot. But why did she need to hide it? Was it simply a fun 4-year-old game of hide and seek? Perhaps. But knowing how intelligent this little girl is, I believe she may have had it hidden for other reasons.
This got me thinking…
How often do we hide away our creations, the gifts we have to offer this world?
Why do we feel the need to hide those beautiful gifts, those beautiful dreams we have for ourselves?
If we know these things are so wonderful, why do we keep them to ourselves, only for others to stumble upon?
What are we doing, as adults, to encourage our children to openly share their creations, their gifts, so others can see?
What are we doing, as adults, to encourage one another to share our gifts?
What good does a gift do if it is hidden away in deep, dark places where nobody can see?
Today, I encourage you. Whether you’re Type A, Type B, or any other through Type Z, take those creations, those gifts out of those boots of yours, and let the world see your greatness!
No one lights a lamp and hides it in a clay jar or puts it under a bed. Instead, they put it on a stand, so that those who come in can see the light. For there is nothing hidden that will not be disclosed, and nothing concealed that will not be known or brought out into the open. Luke 8:16-17
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