Holding Onto Snapshots

HoldingOntoSnapshots

When there are brick walls that circle you, you really can’t see beyond the very thing that your eyes meet no matter where you move. You’re consumed with daily hurdles, and although there are peeps of sunshine through the cracks, you tend to always face challenges. You can’t see past the norm. Even vacations are something heard of, but seemingly not attainable. Sleep is deprived, and any shut eye that is obtained is never enough. You’re literally surviving off of limited stamina. And you chuckle at times when people say to take time out for you. What exactly is that? Time would suggest that there are indeed extra hours in a day to check off your list of tasks and begin tackling a new list called “wants.” For parents of children with special needs, “me” is unfathomable and appears unfair when you compare your needs versus your child’s. Your needs are on the back burner, and based on the day to day, that doesn’t seem to be changing any time soon. We’re faced with something that requires a journey before a destination is met. For most, there aren’t any short cuts. There aren’t any cheetah sprints that will get you where you desire early. Besides, there’s a pace that only your child takes and you’re forced to conform, realizing that the steps they take, no matter the tempo, are progress. But sometimes the steps, as well as, the up and down slopes mixed with being clueless on the end zone causes frustration and a bottomless pit to hold every emotion hostage. And it doesn’t help that apparently hope is playing hide and seek, where long after you have finished counting, hope is still no where to be found. So, my mind often wonders, for a moment, what it would be like to be thrust into a scenery of still waters. To be captured in the splendor of life stopping midstream…just long enough for me to exhale and listen to the waves whisper and hum melodies of tranquility. I haven’t been to the beach in awhile. The most memorable time was when my oldest was not quite a year old. (He’ll be 17 this year, so that should put this in perspective.) Although, it’s been years, the impact of my visit there cuddles my memory nonetheless and the recall brings moments of calm when minutes feel like hours and hours feel like weeks. This place of solitude arrests both anxieties and despair, while sweeping in breathtaking peace and silencing thunderstorms. I remember walking a shore with my bundle of joy. My knees became weak, overtaken by the spectacular view upon our arrival. In an instant, I felt I could remain for I was absorbed in the vastness of magnificence before me. The breeze caressed me. The intonation of waves crashing, with a hint of seagulls adding a tune or two, engulfed me. And the smell of salt battling the fresh air for precedence moved me. The sunset dropped what favored a rainbow, minus certain colors, but I didn’t mind. The illustration on this canvas caused every sense to be awakened, so nothing would deter my attention elsewhere. Even the sand welcomed my feet to begin a story, as I had noticed the ones before me had done. There were no details into their lives needed. Just an impression left on shore that someone had arrived with needs and desires of their own. At the time, I didn’t have much of a story to leave. I had just gotten married a year prior. My oldest was a baby and his tumultuous road of coughing, wheezing and breathing machines hadn’t begun…and my second son wasn’t born as of yet, so autism hadn’t made its debut in our humble abode. NOW, there are stories – plural, not just one story, that life has penned. If I returned to that place of solitude, the size of my footprint would be the same but the depth of the imprint would certainly differ than before…because you see, experience is in every step. Every pain, every joy, every tear, every laughter, every stumble, every mountain climbed and every lesson learned — all exist in each step you make. And oh how I wish to return to such a place, not just to celebrate how far we’ve come, but to also seize the atmosphere of serenity, for times when life drives night to stay for longer periods of time, without the stars being present to bring some kind of light. I would love to breathe in the air of no worries, even it’s brief. I would love to feel the cool water of placidity wash away fear, even if that’s only for a second. But I’ve not been allotted time to go back. So, I’m learning to take snapshots of the surprising, the beautiful and the quite amazing moments when they come. For me, it’s times like when my son started talking at the age of 4….was potty trained at 6….tied his shoes at 8….took his first shower at 12….and finally rode his horse for the first time by himself at 13. These pictures hold time frozen for me. Consequently, at any point that I fall and struggle to stand from the overwhelming everyday, I can just pull from my heart one of these photos and gain peace, comfort and strength. Many parents of children with special needs don’t have the luxury to fly away for hope and be revitalized. Sometimes our reality is all we have, and we have to learn to step away, pull out our mental pics of a “first,” of a try with much determination, and of what we would consider a gold medal win….and we remember why we’re fighting, who we’re fighting for. Then we can release everything that our soul has bottled up and finally breathe. We can stand up and we can walk….and we keep walking, waiting for another snapshot to come along.

Thanks for listening,

Portia

Advertisements

Preparing For The What Ifs

Preparing4TheWhatIfs

The future holds both uncertainties and possibilities in its hands. Initially after an autism diagnosis, you usually make acquaintance with the uncertainties. Prognoses vary and as of yet, there’s no cure, so where do we go from here? A juggling act suddenly begins, trying to catch and figure out which fear should be dealt with first – (1) What exactly is this detection? (2) What will the years to come look like? (3) What services are needed and which ones will actually work for my child? (4) I accept my child for who he is, but who else will? And although, over time, you learn, you adjust and you fight, the reality you now travel is still as real as the day you shook hands with this developmental disorder. Well, all of this and more becomes a swift movie reel when surgery is placed in front of you. It doesn’t matter what kind of surgery it is, there’s always risks. The risks often turn into further “what ifs” and its sole purpose is to camp by your side, fanning you worry. And it doesn’t help that you have to list next of kin, in addition to, signing consent forms concerning your knowledge of the possibility of unpleasant or unwelcome things happening…. The stretch to this actual day for me was both frightening and overwhelming. The faces of my husband and children became more defined. Every smile, laugh, cry or any emotion for that matter or any movement at all – their stride even and their voice – all captured in my heart, branded in my soul. Every hug held tighter and each hand held longer, which for boys is not favorable — I didn’t care. I was savoring each moment. The prognosis was good from the start, but potential problems, during and after surgery that were discussed, was all I heard. I needed to be alright though. What would happen if my capabilities became inabilities? Beyond that, what would happen if I did not make it? I thought about my husband and each of my boys and I got sick. When I thought about Callie, I couldn’t breathe. His communication has come a long way, but who will continue to guide him on the road to progress? Who will accompany and steer him through and from the teenage years to adulthood? Who will advocate for school accommodations & quality of life….and be that voice he clasps onto with assurance and security? Who will show him acceptance, respect and remind him that he is special? He is loved. He is smart. He is gifted. He is every sunrise….every sunset….every tall mountain….and every roaring sea. Who will be patient with him, be understanding and see his potential and not a label? Who will embrace him when he falls, as well as, praise him when he triumphs? And who will convey to him that no matter what life presents – good or bad, that he is a beam of light in the world and that his existence matters? Panic covered every inch of me. Not only was there a possibility of him being motherless, but his future hadn’t been set up either. Not much had been set aside for down the road. I had done my child a disservice. I lived in the day to day while abandoning the future that was right around the corner. Failure and guilt both joined panic and for the weeks leading, there were these three parading around me. Whether I was asleep or awake, I came face to face with the consequences of being unfinished. I prayed a lot….a whole lot. I prayed that God would allow nothing to go wrong and to make me ok. I want to grow old with my husband. I want to see my kids grow up and see where their gifts take them. And I want to see Callie soar farther than his wings have taken him thus far, but if where he is remains, I want to be here to let him know that it’s alright. I’m here and we’ll walk. We’ll run. We’ll even stop and smell the roses. I just want my presence, even in silence, to speak loud and clear that we’re on this journey together. I realize that his story will one day continue without me, but I prayed – NOT TODAY! I want my chapters in his book to still be written and not be cut short, especially when there’s so much left to be said.
My surgery was two and a half weeks ago. I’m here, well and grateful. Now, I’m working on Callie’s tomorrow. The what ifs, not only, propelled me to think about what’s next, but to put into motion what my son needs to tread on this journey. My mission is to not be caught again without something being set on the table. I want to leave him with preparation and not helplessness. Besides love, that would be an optimum gift to him and a legacy left. There’s a cluster of things that still need to be done for Callie….and I dare not omit my husband and my other precious boys. I’m just thankful that I’ve been given another opportunity to do more.

Thanks for listening,

Portia

“I’m Here” – Not Mere Words

I'mHere

I’ve always called my Mom when something went wrong with the kids. Sick. Bad grades. Sibling rivalry. It doesn’t matter. Her voice hugs my fears and frustrations, and is the assurance needed to know that this too will pass. Her words carry a sense of certainty and serenity. And even when she is stumped on a matter, somehow her “I don’t know” still says “It’s ok” and brings the comfort I long for. So when my son was diagnosed with autism, her warmth cradled my unknowns and my despair. It didn’t remove it, but her presence was my backing when everything in me felt weak. My father, a pillar from afar, was less vocal. He prayed for Callie and would ask how Callie was doing, but for the most part, he couldn’t quite comprehend the name that was now tied to his grandson. He was quiet, yet perplexed. No one in our family had autism. What was autism? What does that mean for Callie? How was he to interact with him? The life with the first grandson did not resemble the life of the second grandson. How was he to carry on a conversation with one that was nonverbal, when the only form of communication he had was talking? Everything was different. He would have to familiarize himself with the routine in place and also be aware that deviating was not an option. Food had to be prepared a certain way, at a certain times. Books and puzzles (Callie’s entertainment) could not be touched and or even looked at. And showing affection or just being social was out of the question. All the things known to a grandfather was stripped. Even tossing a ball. Playing a board game. Reading a book. Eating popcorn while watching a TV show. All was an automatic shutdown. My oldest didn’t have a problem being the only one enveloped in his grandfather’s love, but my heart hurt. My parents lived states away and it was important to me that MaSweet and PaPa (what they are called) was not known in name only. Initially, they would come visit three times a year and Callie appeared to be content just seeing them those three times a year with no real contact. That was his world, and for awhile, my father played by the rules. He didn’t impose. I’m not sure he would have known how to connect anyway, especially if every attempt made yielded no response. Therefore, my Dad just had to live life happy (for the time being) with one grandson running into his arms and heartbroken that the other one did not. This certainly was not the portrait of family he had envisioned. But daylight would later seep in where darkness had obviously reigned. Callie said his first words at four years old. The magnitude of brightness that moment brought cannot easily be articulated. We heard WORDS! I didn’t care if it was on repeat. His voice was like music that swept in hope. And it didn’t stop there. Small strides toward not only communication existed but the social skills were worth checking the progress box. Every day, however was not a championship win, but forward movement of any kind caused us to wake up each day expecting to see the sun and each night, ready to jump over the moon. Limitations were off the table and upon hearing about Callie’s gradual climbs, my father’s heart skipped a beat for the possibility of his grandson not only seeing him but knowing him. It was a turtle pace development that led to brief hellos on the phone, lunch at McDonald’s and short park visits. He was the one who taught my son to pee in the toilet instead of all around it. He showed him how to clean up his room and take his tray into the kitchen. It was my Dad who even convinced him that he was too big for baths and showers were the way to go. Because of the meshing of patience, compassion and understanding in every visit, now my son asks for my Dad. He knows the dates when PaPa is coming. Their relationship is still evolving, and because my Dad doesn’t live around the corner, it does take extra effort to not lose what has been established. Yet, he’s done well. He’s experienced the zigzag of life on this autism road and has learned a lot. Some days you get what you expect based on routine. Then there are days a tidal wave hits and in an instant, strength, faith and perseverance are engulfed and you’re left perplexed on what just happened. He’s shaken hands with both the rises and falls of this journey and through it all, his determination has stood still and has made me proud.

Father’s Day is Sunday and for me and my son, my Dad is a rock. He is the eagles’ wings that secures us, the pier of courage and stamina that undergirds us and the heart of gold that embraces us. Without much knowledge of autism in the beginning and still walking careful and unsure on some things, he’s adamant about his “I’m here” not being a mere statement. It is a declaration of love and support that touches the depth of my son – while in his presence, as well as, when he is a great distance away.

So I want to say “Happy Father’s Day” to my Dad and to all of the autism Dads, grandfathers and uncles whose definition of adoration and acceptance goes beyond a dictionary meaning. Actually, their picture and their story should be in a separate book. Words like love, resilience, fortitude and so many others wouldn’t need to be in bold print because their voices on paper would say it all….and I believe the mothers wouldn’t be the only ones praised for their dedication to their child and to the cause. But that’s when…only when you would really see the Dads and fully grasp how incredibly amazing they are.

Thanks for listening,

Portia

The Rating Scale Versus What I Know

TheRatingScaleVsWhatIKnow

A couple of months ago, my husband and I requested an updated autism assessment to be done on our son. This would determine where he is currently, as far as, his communication, social and academic skills are concerned. The results came in, and needless to say, I was not shocked but I wasn’t pleased either. I read it in complete awe that who my son is was reduced to adjectives and phrases that should not be spoken, let alone, written without a “but” to accompany his strengths. This bit of knowledge precedes him (wherever he goes) with no interjections of progress and abilities. He is “low range.” He is “functioning significantly below the average range.” “His overall language abilities are deficient.” He has “grammatical weaknesses….speech impairment….and his educational achievement are extremely low.” The school year is coming to an end and I wonder immensely what has become of it. Other than being enlightened and abreast on some much needed life skills, he has not been prepared for the adventure that high school will bring. A matter of fact, the measurement of growth from school beginning to school ending is in a lot of ways disappointing. He’s really no taller than he was when he first arrived. But then I ponder if that’s all that was expected of him. It would certainly explain the “low, very low and extremely low” that draped the paperwork, given to me as if the Sound of Music was playing softly in the background and all was thought to be well. Let me be the first to insert that I am not blind to the autism that settles in the atmosphere around us. Callie has delays – yes! He has some weaknesses – I know! Understanding can be challenging – True! Change and meltdowns go hand and hand – I am fully aware! Routine is a close friend – Absolutely! I know my son. The details of the report did not blow me away. The conclusion did. As a whole, the representation of Callie was dim, lost and unachievable. He was painted as if progress was nonexistent. The road less traveled seemed to be traveled by many….and Callie appeared to be among the multitudes with the “Different, Not Less” sign attached, but “different” and “less” are crossed out and “less” is left protruding out – with no doubt of what the true perception of these individuals are. Unfortunately, that was not the worst part. As you may know, parents are given a questionnaire to fill out also. I’ve always had a problem rating my child. If you know anything about autism, you know that each child is different and they learn differently. Some of the questions would have required Callie to have had prior experience. If not, then he is labeled “never” or “is not able” or “guess.” So, let me explain the rating scale. It includes “is not able,” “never,” “sometimes,” “always or almost always when needed,” and “guess.” I checked guess on many scenarios because my child had not yet experienced some of what was listed. I was told twice that an interview would have to be done, which I had planned on asking for one, especially after not feeling like my son’s character and capabilities could be narrowed down in a rating scale. This would allow me an opportunity to clarify. I thought this was great! I wanted a chance to expound. I didn’t want my “guess” answers to suggest incompetence on Callie’s part. Some of the moments in question had not come around. However, instead of an explanation, I received an IEP meeting invite to discuss the results of the evaluation. That afternoon, Callie brought me the diagnostician’s summary. How could a summary be made if my part was not sufficiently spelled out? And what kind of parent am I if my check marks convey anything other than what I know about my child? I was later told that my answers wouldn’t change the results of the test or Callie’s services. So, there was no need to revisit the parent’s portion of the assessment. No need to revisit? And according to the summary, my ratings were “considered uninterpretable” anyway. “Uninterpretable” meant I had too many “guess” boxes checked. The final line in the report stated “the findings and judgments expressed here are an accurate reflection of the information available for this report.” What information? I didn’t get to have a voice, so how could it be accurate? The only data gathered was from her, his teacher and his speech therapist….none of who, by the way, submitted anything remotely that resembled growth or improvement. But I can swallow that for the time being, as long as, I can also illustrate on paper and in word the boy they do not see or really know. Allow me to bring a movie reel of his 14 years of living. Give me the floor so I can talk endlessly about his courage, his stamina, his resilience, his persistence, his heart — and yes, many of these words are equals but place them beside my son and the meanings go beyond Webster’s translation. Give him a chance to show you he can go to a school restroom by himself, so he won’t be judged and rated poorly and unfairly because he doesn’t go to one in a public setting (as asked on the questionnaire – ex. amusement park, movie theater or mall) where predators often lurk to lure kids who are not aware of the dangers that roam about. Sorry! I’m a tad overprotective! Don’t count him out because he doesn’t cut meats into bite size pieces or he doesn’t go out of the house alone unsupervised in the daytime. First of all, the only meat he eats is chicken legs and chicken nuggets. No cutting required. And Callie never goes out alone. Can he? I’m sure he can, but as you may or may not be aware, many children with autism have the potential to wander. Callie has on occasion. Not happening! A generalize questionnaire does not fit every child. To expect parents to categorize their children in a certain box means they are either limiting their child or they too are judging them for their weaknesses and inabilities in a particular area, especially without giving them a chance to go in details about the ups AND downs of their journey. And labeling parents and their answers as “uninterpretable” does not speak highly of them as a parent or them knowing their child. In order to fully assess a child with special needs with accuracy, a parent’s input is vital. How can an evaluation be complete if you only base it on school officials and their observations? Sometimes the way a child behaves at school is so different than at home. The person administering the test and the environment that the test is given may alter how a child responds. The questions asked without explanation or cues may have the child confused, unsure and scared. Everything has to be taken into account. A diagnosis shouldn’t lock a child out of the world of expectation and possibility. There’s more to these kids than what’s written down on paper. And to say the story the parent knows is not needed ( no matter what the reason is) goes against their rights as the parent. Beyond that, one fraction of the story is revealed, leaving the reader’s perception of the report to be one sided.
We discussed the results in the IEP meeting. Our concerns weren’t understood. And that was ok, because the following week, we met with the District’s Director of Special Education. Our voice was heard there and the assessment was considered incomplete. A representative from the district redid the questionnaire.
This year has been a long and overwhelming one for us all. My head pounds at the thought of the upcoming road ahead to high school. But I’m grateful that this year has come to an end. We made it! Peaks, valleys and everything in between. However, the boxing gloves will not retire as summer approaches. There is still work to be done. For Callie, the fight continues.

Thanks for listening,

Portia

After The Day

MothersDayPic

Mother’s Day comes and goes so quickly. It was just here a week ago. Breakfast in bed. Hand-made construction paper, glue & glitter cards fashioned beautifully. Flowers arranged perfectly, screaming come see me…..come admire me. And a family supper or an elegant dinner for two to cap off an incredible day. Mom has been crowned Queen Of The Day – a day to show love and appreciation to the lovely soul that she is. But wouldn’t it be great if this day of acknowledgement was a few times a year? Or wouldn’t it be nice if Moms were honored anyway without being told a date to do so? And just think – for Autism Moms, “You’re doing a great job!”, “You’re amazing!” “You rock!” wouldn’t be rare, but it would be heard during those moments of sun, rain and everything in between. What is overlooked is the fact that for many, this calendar date where recognition roars, may be the only time “thank you”, “love you” and “you’re special” are made known. Thus, these words aren’t only treasured, but these Autism Moms hug them tight until 365 days rolls around again, because for some, that’s all they have. They go to their reserve when meltdowns are in public….when advocacy is seen as a nuisance instead of support, rights & the child….when progress has departed the premises and seemingly there are no sights of a return….and even when groundbreaking accomplishments comes along, they are solo because there’s no one to share in the celebration. A mother stands craving for someone to say “I understand”, “Been there” and “Good days, bad days, mistakes and all, you’re a remarkable Mom.” However the day is gone. The praise from before is silent. Requests are back. The job resumes. Errands are run. Chores are tossed, trying to figure out which ones can wait and which ones are of urgency. School projects are due. Homework with no instructions or examples shouts headache. And for many Autism Moms, there’s the added on “stick to the schedules”, plan of action for a routine change, sensory issues, medical problems, fighting for rights in schools, sleepless nights, long days — just to name a few. The responsibility she shoulders is enormous. The world she carries is often heavy, but no one really knows that. She does it with such ease, that now it’s considered the norm. No one expects her to fall or shed tears of hopelessness. She’s seen as a constant rock and not one that, at times, finds safety in insecurities, solitude and doubt because they know her there and won’t judge. Others are blind to her depleted strength and the peace that has long been boxed up and shipped away. And if she mentions her bottomless pit moments, she’s not believed or she’s given a pat on the back as if that’s sufficient enough to cover the hurt she bears. She is portrayed as strong, which she is. Experience alone has shaped and equipped her. The climbs and declines have built her muscles. And her child has held her heart even when it was torn apart, a lot of times, without them realizing it. But sometimes she needs the embrace of gratitude the days after the day, when there aren’t any special cards, flowers, or candy in the store on display. She needs hearts and eyes to remain open beyond the Sunday recognized for always catching the helplessness of life and bandaging the frustrations and fears with her love. She is worthy of praise and adoration for every action and word that has established the foundation in which her children stand and for instilling values and self-belief because no one saw her true child but her. And during her times (unnoticeable) of raging seas, yet still having at least a pinch of hope left to brace her children with what they need, automatic cheers should echo for years and years to come. Autism Moms may not get the plethora of kudos for their sacrifices, support and unconditional love from their children in the typical way. It may not be sung through an actual “thank you” but a smile, an eye contact, a first word or mastering a goal may be the “thank you.” And society may only nod in their direction on that one day in May, but not judging and accepting their families would be thanks enough. I guess what I’m trying to say is Autism Moms and all Special Needs Moms may not receive a standing ovation or see their names in lights. And yes, they have earned the right to have more than one day of pampering and to be esteemed highly. But my hope and prayer for you, Autism Moms and any Special Needs Mom is that you would capture every moment (the efforts and the triumphs) and know this was possible because of you and how tirelessly you champion for your child. Mother’s Day may be over, but let that day continue in you. Your resilience, your courage and your love for your child does not begin or end on Mother’s Day. So, know that sometimes without words, without drawings, candlelight dinners or a gracias, merci or any other expression of gratitude, you are an amazing Mom….and let the fact that your child looks to you as the answer for all, be the ribbon in the sky you hold on to.

Thanks for listening,

Portia

Like Night & Day

LikeNight&Day

I assumed middle school was geared to prepare you for high school, especially by the 8th grade. And I thought, particularly for children with special needs, it should be mandatory. Being undergirded with more comfort, routine and awareness before a huge shift transpires is vital. Preparations could include promoting independence. (Ex. Increasing responsibilities. Establishing jobs within the classroom. Giving leadership roles. Allowing them an opportunity to handle certain challenges on their own.) Design goals to ensure a student will gain skills needed for high school. Suggest electives based on their interests. Link students up with other high schoolers ahead of time. (Start a friendship group that will open up their social skills.) Make the classroom a similar environment to that of the high school classroom, so students can become acclimated to their new place of learning a lot quicker. Expose these kids to the actual high school early. (Take them a few times a year to see the building and to meet up with the principal, the teachers and the students in the class. Observing can help bring comprehension to the change ahead.) And help them excel now and in the future by letting the functional academics be based on ability, not the diagnosis and couple it with accommodations and support they may need. These are a few suggestions. I just figured that these kiddos will need more than a conversation during a transitional IEP meeting at the end of the year. Their whole environment is about to change and for some, that could be catastrophic if not handled in the best interest of the child. An intentional plan of action should be in place for the present year and the year coming. But maybe I’m expecting too much. I was really thinking that equipping my son and other children with special needs would have started at least some of these tips yesterday. And when I say yesterday, I mean at least the beginning of the 8th grade year. However, I’m finding out that this is not so in many instances. Recently, I was faced with an awakening, and fear ushered in new levels of worry that brought me to my knees.
This year has not been what I had expected it would be for my son. Even though he’s learned quite a bit of life skills needed for the day to day (and I’m grateful), he’s lacked the functional academics that is also a necessity to be adjoined with the life skills taught. There needs to be a balance. And often times, it’s been disappointing and disheartening to watch. He entered a setting that was the very opposite of everything he had learned and was accustomed to. He’s had to manage through a lot, and I’ve wondered why should he have had to? His goals did not reflect that there would be a complete metamorphosis to his familiarity. I presumed the year prior would resemble the year current. And yes, I do understand that this is a new year, a new school and a new district, but I had hoped there would be some similarities that my son could hold on to. Since this was not the case, my son has taken on a new normal that quite frankly, at times, reminds me of his elementary years. Although my expectations are high for Callie, I was starting to feel numb about how these expectations would come about. We knew high school was coming but based on where he is, I figured that this is pretty much where he is going to be when he makes the transition. However, I took a blow two months ago. My husband and I visited the high school that Callie will be attending in August. The students there and their maturity, their responsibilities, their understanding and their communication & social skills were beyond anything I could have imagined. I wasn’t shocked because I thought this was an impossibility. And I do realize that each child is different. I was shocked and heart broken because where my son was versus where he is going was miles apart. It was like being in another country. The language was different. The atmosphere felt foreign, and I knew if I felt lost, surely, my son would too. His current habitat for 7 hours of the day cannot begin to connect to the new journey ahead. I don’t look at what Callie cannot do, but briefly in that moment, his limitations jumped everywhere in my mind and I became blind to who he was…his accomplishments, his strengths, his determination. His weaknesses swallowed up what I knew of him and tears fell down my stunned face because preparations for the year to come had not been introduced. Callie’s year had been at a standstill. No regression, but no forward movement either. I watched kids in this high school classroom answer science questions that would have been asked in a general ed setting. There were tablets used to follow the text. The students were taught as if special needs was in theory only and not in existence. Students were engaged in conversation and were anxiously waiting for the opportunity to bring their input to the forefront. No one appeared to feel shy or out of place. There was determination in the air, and there was even a level of expectation from the teachers and paraprofessional that took precedence. My heart sunk. I kept thinking – the present should not ever be that far off from the road ahead. The experience was like night and day. And maybe I should have seen that coming especially if your child has not been properly equipped. The teacher for next year saw the deep concern in our faces. She smiled and said, “I need you to trust me. Callie is going to be fine.” Both my husband and I talked over each other, trying to convey how unprepared our son was. She smiled again with much assurance and said, “He’s going to be fine. What you see now is not how they all came in. You have to trust me.” She seemed sincere. Her smile gave comfort, that this was not her first day at the rodeo and her words rang the much needed security essential for me to look beyond the day.
Now, I won’t say I’m not nervous. I don’t think I would be a Mom if I didn’t have some insecurities. High school is not a walk in the park. The social aspect alone can be too much to handle. So, for my son, I still consider the what-ifs. I’m concerned about his uneasiness and his vulnerability. I think A LOT about how he will connect to the different world he’s about to leap into….and believe wholeheartedly that he could have benefited from some exploration, details, groundwork or anything beforehand. But I cannot dwell on what was not established for him. I will make myself sick and further will be an ineffective backing for him. This is where I lean on hope and experiences of past to rush in like the wind, and understand that everything cannot be taught. As much as I would like, I cannot prepare for all things, and that fact is a hard thing to accept, when most of life has been in the bubble of routine. Going outside the norm is not a treat I look forward to tasting. Both Callie and I find safety in the already. But I have seen my son overcome many obstacles, and I cannot and will not start questioning his will and persistence now. I have to remember what I know and have learned about this journey, and simply trust that hope will merge newness and prayerfully, something familiar – and take Callie on an incredible ride.

Thanks for listening,

Portia

The Oyster & The Pearl

Dad&CalliePic

A gray cloud brought a hush over our house after the autism diagnosis was not only placed in our hands for viewing, but to remain. And I find it interesting that our child was no different than the day before, yet in a matter of seconds, an explanation to the unanswered questions floating over our heads were brought to the forefront and everything seemed to change. Our atmosphere never again returned to its original state. Our hearts were sunken to an all time low and our minds were blown. “Your son has autism” rang louder and louder by the minute and this tidal wave of truth overpowered what we couldn’t wrap our comprehension around. I screamed and sobbed. Screamed and sobbed. Screamed and sobbed – but I couldn’t stay there. Despite the unbearable pain and disbelief, I had to pocket my feelings, switch gears quickly and champion for my son. I did not know which direction to take, and because the turn around did not come as easy for my husband, for a long time, alone was the habitat where I dwelt. My husband felt lost and helpless. Furthermore, he couldn’t grasp fact in one hand and his son in another — it just didn’t balance. His perspective on everything became dark. There were tears but no conversation. Mad love but fear. Aware of challenges but frozen. Present but distant. Heart but unexpressed. His son was before him, but his ability to reach him was submerged in emotions too deep to articulate. He swam in uncharted waters and found it difficult to stay afloat. It helped a little that he traveled quite extensively. For a brief moment, he would get to escape what he couldn’t see how to aid, how to comfort and how to extend beyond his capacity. I soon realized that it wasn’t that he was in denial, but he couldn’t grab his son, and I don’t just mean physically. We have three other sons and their milestones were clear, but he was crumbling because for Callie the same was not there….and the present became a foundation for what the years to come would favor. After high school. Employment. Housing. Finances. Guardianship. Life after us. All was overwhelming and for awhile both inhaling and exhaling appeared to be at a standstill. However, progress peeped through the fog, slowly but surely, and all the no’s and never’s were pushed aside. My husband’s wall of uncertainty finally began to fall apart. Where limitations had roared, possibility’s cry, although subtle, immobilized it and no more was autism the center of attention – our son was. His feelings have taken a backseat and he recognizes that his child’s now and tomorrow are at stake. He sees the importance of making thunder for your child, and how no matter what, your child needs to know you care and no one is more in their corner than you. Today, my husband and Callie are the oyster and the pearl. Callie lives inside my husband’s covering – tossing, turning and molding into something brilliant…something beautiful…something grand, but always protected through the process. Based on the here and now, one would not have imagined prior that my husband was running with fear and a heavy heart. Still, when you see these two precious souls of mine, you see a force to be reckoned with….and you also see autism awareness and acceptance at its finest.

Thanks for listening,

Portia