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Is Parenting a Phase?
Is Parenting a Phase of Life?
I so vividly remember my mother telling me in our early years of parenting, “Enjoy this phase for it really is the Golden Years.”
She was referring to the exhausting years of what seemed like neverending days of getting up, cleaning up, picking up; wiping noses, wiping counters, wiping bottoms; longing for the night to come, longing for sleep to overtake the littlest ones, longing for a shower, a hot meal, and an adult conversation; wondering if life would ever really seem to be how we thought it would be.
Two years into our marriage, we were blessed by the arrival of our first son. He was prayed for, planned for, prepared for. Four years later, we were doubly surprised, first by the knowledge that our family was growing again, and by the way, we’re having twins. Five years later and we were expecting again, this time to be surprised by the sudden loss of our fourth child who waits for us in glory. Another year later found us in growth mode again with what we thought was sure to be our last family expansion and we were gifted our spectrum son. Fast forward 10 months later and we were surprised yet again with the one who truly is our caboose.
It seems life has never really been what we expected or thought we had planned. More than two decades into our marriage and we are still finding ourselves surprised by unexpected twists and turns.
Early on, I thought we’d be on the downhill slide of this parenting thing. After all, we were only going to have two kids and the oldest of them are now in high school and college. I’ve never been so glad to have been wrong as our youngest two are currently in elementary school. We are looking at another ten years of bleacher seats watching our kids do what they love.
There are days I still long for night to come and sleep to overtake me, but I’ve come to realize that while the days are long, the years are short. It seems our oldest was just in early elementary not all that long ago and today, he is finishing another round of college finals.
Having a child on the autism spectrum adds to the challenges of parenthood. Please don’t misread me: he is not a challenge, but autism offers us challenges that a neurotypical family will never know. I sometimes wonder in the midst of these challenges if this parenting thing really is just a phase or if we will be the primary caregiver to our son for the duration of his life.
Before we go any farther, let me explain that yes, I know once you’re a parent, you’re a parent for life. Some are lucky enough to “graduate” to becoming grandparents. But when you have a child on the spectrum, there is a question as to whether they will be able to live on their own and if they will be able to function as an independent adult. I wonder about his future in terms of family life because I know social interactions are sometimes more difficult for him than his neurotypical peers. I wonder if he will find someone who will accept him completely for who he is, love him through all of his ups and downs, and choose to spend their life with him. I know him and I know that should that ever become the reality, it will take an incredibly patient understanding person and that they will be rewarded with laughter and joy beyond compare. But I also know that for spectrum parents, there is the possibility that their child will always share their home. For them, this isn’t a phase, but rather life.
Thanks to the countless hours of work and effort invested in our son by compassionate teachers, coaches, therapists, doctors, and friends both near and far, I have hope that our son will continue to grow and develop and eventually catch up with his peers’ social abilities. However, I don’t know that that will for sure happen, or that if it does, when it will happen, and that’s okay. So much of our lives isn’t what we expected it to be when we took our vows all those years ago and yet, it has been an incredible ride!
Rule #1 Aabout Autism: Talk About Autism
Rules are all around us. Some are self-imposed (Don’t pick your nose in public.) and others are heavily mandated, (Don’t drive over 55.) but we each make the decision as to how closely we are going to follow any particular set of rules.
There really aren’t any set in stone rules about autism and how to live with it, but there is a widely respected unspoken rule and that is simply to talk. Talk about autism. Sounds pretty easy, right? For the most part it is, but there are times when it isn’t – times like when your spectrum son is the butt of the joke, again; or when he’s having a hard time and other adults are beginning to stare; or when it’s just been a really long, loud, tiring autism day.
Sometimes, talking is absolutely necessary for the safety of the spectrum child; but sometimes, opportunities present themselves for a good conversation which will simply result in better understanding, and that will lead to greater acceptance. At the end of the day, isn’t that what we all want for our kids – for ourselves – simply to be accepted by our peers for who we are?
A few weeks ago, we had an unseasonably warm spell right smack in the middle of February. We’re talking t-shirts, no jackets, and for the bravest of brave, even shorts. My little people and I took advantage of this early spring and played on the playground after school every chance we got. One day, we were joined by other families enjoying the warm reprieve from winter.
Our little bit was running about playing tag with the other kids while Ben was just running around burning off some pent up energy from the day. I ran with him a bit, playing chase, laughing and giggling all the way. One of the other kids, who I’ll refer to as Z, invited Ben to play tag with them and my anxiety level skyrocketed, knowing that Ben doesn’t like to be touched, yet thankful for the invitation. He answered, “YES!” and again, I needed a deep breath to prepare for the spiral that would surely come with the first “Tag – You’re It!”
I was wrong. Z was so gentle with tagging Ben, it didn’t bother him a bit. Z even took the time to stop and show Ben how the game works, explaining that he needed to chase the other kids, touch one of them, say, “Tag – You’re It!” and then run away. The boys laughed and ran off playing together, and I began to breathe again – relieved, overjoyed by the kindness of Z, and disappointed in my own apprehension.
I watched the kids play for a few minutes until Ben was done. He came over to me and we decided to head to the swings. Much to my surprise, Z came as well. We chit-chatted a bit and out of the blue, Z asked, “How did Ben get autism anyway?”
And there it was, the start of an amazing conversation between two people who care about my son. Z wasn’t being nosy or asking dumb questions, as it seems people fear will be the assumption when they ask about autism. He was genuinely interested in learning more about someone to whom he wants to be a friend and wants to get to know better.
That conversation reinforced everything I’d ever read about this unwritten Rule #1 of Autism: Talk about Autism. The more we talk, the more people understand. It is only with understanding that acceptance can be found and true friendships can be formed.
Time for Hoops!
There was a time we couldn’t go into a gym without headphones because the noise was too much. There was a time we wouldn’t step away from the group of children Ben was a part of because the prospect of being bumped into or touched brought with it the assurance of a meltdown. There was a time we didn’t dare to dream of team sports because smaller children, especially curious smaller children, frightened our boy. It shames me to admit it, but there was a time I didn’t believe. I didn’t hope because the possibility of meltdowns – loud tearful, heartbreaking meltdowns were more a promise than a possibility. I’ve always told our kids to never give up, to always have a couple of goals to work toward and to never stop dreaming, but if I’m honest with myself, the truth is that I have been guilty of all of those to some degree.
Thankfully, I have been proven wrong time and time and time again as our boy continues to blow our minds. A few years ago, he wanted to play baseball, so we signed him up for t-ball and set off on a new adventure. That first year was rough, as in I had to chase him around the bases and stand by him in the outfield. (Read: Hold him up in the outfield because the sun was too hot and it took too long – yes, I felt his pain. It was t-ball after all.) But he was out there playing baseball. Despite the setbacks, it was progress.
He wanted to play again the next year and the next and the next. He’s the tallest kid on the t-ball team, but he also smiles the biggest and stops at home plate after each run to take a bow and say, “Thank you!” to those cheering for him. It’s t-ball and it’s a safe place for him to grow.
About this time last year, we happened to be in the middles school one evening for a meeting regarding one of our middles and the upcoming baseball season. I thought the meeting was in the gym, so imagine my surprise when we walked in to find it also happened to be the night all the Mini Tornado basketball teams were practicing.
Our boy stopped dead in his tracks and I braced myself for the worst. The situation presented all the trademarks for a meltdown: loud noises, lots of small children running around, jackets and bags thrown on the floor – chaos to the nth degree. Much to my surprise there was no meltdown. There was no covering his ears and cowering next to me. There was no screaming, no crying, no opposition at all. What there was was just as amazing as what there was not.
He watched in silent awe, raised his hand, and pointed a finger towards all the activity before us and whispered, “I want to do that.”
Unsure I’d heard him correctly, I asked him what he’d said. This time he laid his hand on my arm, looked me in the eye, pointed back to the kids, and said, “Mommy, I want to do that.”
Time all but stood still in that moment of chaos in the gym, but I knew the task ahead of us would not be easily accomplished as once our boy gets an idea in mind, his resolve is solid in making it happen. Signups done, teams assigned and the season already underway, basketball was not happening in 2016.
I managed to distract him enough to get out of the gym and on to the meeting we were there to attend, but a new passion was brewing in our boy. Whenever we were outside last summer, he always ended up with a ball in hand – didn’t matter if we were in the pool, out back or in the house. If there was a ball around, he grabbed it and began to toss it around, most generally flanked by his ever faithful little sister sidekick. Very few balls went through the hoop last summer, especially early on, but he kept trying. By the end of the summer, he would usually make a basket at least once each time we were out. So when the opportunity came to sign up for basketball, I checked made sure he and his sister could play on the same team and paid the fee, hoping for the best.
The early spring we have enjoyed this month has allowed for more basketball than I ever would have thought possible in February. The cheering out back is getting louder and coming more frequently as the ball is going in the hoop more and more often, but I still wasn’t sure it would be enough to endure all the noise and chaos of actually being in a gym with multiple people, many of them smaller than him, and all the noise that involves. Headphones don’t really seem to be much of an option either as we want him to be able to hear the coach. And the coach? What if the coach isn’t familiar with autism? What if he or she is a yeller or a screamer, or one who physically redirects kids? How was this going to work? My anxiety level was rising beyond compare by the time their first practice came around.
I have learned many lessons over the years as a spectrum mom, but one of the most important to date has to be to learn to trust people, expect the best, and never say never. It would have been so easy for me to say no, the chaos would be too much and we don’t know the coach, so we better just sit it out, but how unfair would that have been to our son? You see, that first practice was nothing short of a miracle in my eyes as I got to stand on the sidelines of the gym and watch my boy shoot and score and celebrate with his coach and his team – HIS TEAM, of which I am no part. There was a time I wasn’t sure this would ever happen, but especially not at such a young age. I’m not one of his coaches this time, and I have never been happier in my life to not be needed.
When Puke Reveals Progress
Catching up and sharing from the files of my ramblings. This particular set is from January 31, 2017.
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Living life on the autism spectrum presents several different challenges. One of which for many individuals is that of varying gastric woes. Our spectrum son has battled his share of these over the years, but fortunately, and thankfully so, this doesn’t seem to be much of an issue much any more as he continues to grow and develop.
However, there are times his gastric system revolts causing stomach upset and in the worst case scenario, vomiting to expel anything currently in his stomach. This typically only happens after he has either rushed through a meal or has simply eaten too much. Both of these situations are near completely cured once he has cleared his tummy. Completely – as in so much has come up that his stomach certainly must be empty, and completely in that he returns to smiling, laughing and playing as active as ever.
Such was the case at his sister’s basketball game earlier this week. We had joined his dad for dinner that night and he had eaten rather quickly, much faster than the rest of us. We tried to slow him down, but apparently, we had waited too long. It wasn’t far into the game that I heard his muffled, “I’m sorry, Mommy.” and turned to see the classic gastro-troubles-look: pale, glassy eyes, lips slightly parted and labored breathing. The first few times I saw this look, I was frightened as it seems he can’t get the oxygen he needs, but in time, I’ve become accustomed to this precursor and even thankful for the warning it provides.
Quick as ever he moved at my command and we made it to the trash can in time to overt any real crisis such as getting sick in front of or on anyone near us.
I didn’t think much of it as this has become somewhat routine when he eats too fast or too much. It’s one of those things that as a parent, you don’t necessarily like, you just come to accept it as part of the package. You deal with it and move on. And this is exactly what I did that night.
Labels Don’t Change the Important Stuff
Catching up and sharing from the files of my ramblings. This particular set is from November 30, 2015.
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Our oldest daughter asked me the other day, “What kind of autism does Ben have?”
It was a fair enough question as she knows other kids with specific diagnoses such as Asperger’s Syndrome and PDD-NOS, but these labels aren’t something we’ve necessarily talked all that much about when it comes to her brother.
This could be for a variety of reasons:
a) He’s a person, not a diagnosis.
b) There are so many variances even within the different types of autism that no two kids are alike.
c) Specific types aren’t always diagnosed as young as Ben was when we initially took him to Easter Seals.
But, if I’m honest with myself, it’s probably as much
d) we don’t know
as anything.
Initially, this was a little frustrating at best, but the more I’ve thought about it, I’ve begun to wonder if it really matters what kind of autism it is? Beyond knowing how to best help him learn to help himself, do the labels really matter? Yes, they can help us better understand him and how he deals with things, even help point us in the right direction in terms of research, therapy, and assistance, but they don’t change the important stuff.
The bottom line is that he is a person first. Sure, he has a few little quirks that set him apart from his peers, but in all honesty, don’t we all?
Ben’s official diagnosis was simply “autism” along with a side of expressive/receptive language disorder and a slight motor delay. All that really tells us is that yes, he does in fact have autism, communication is going to be a challenge area for him, and he may have a slightly different gate when walking and running than others.
I find myself returning to one of the most poignant pieces of wisdom a dear friend shared with me the day before our diagnostic clinic: Ben will be the same boy coming home from the clinic that he was going into Easter Seals. He will still be your son. You will still love him to the ends of the earth. No label can change that. Diagnosis can help you know which direction to turn, but it will not change anything about who he is or the fact that he is still your son and you are still his parents.
We still laugh and cry. He still wins my heart over every single time he looks me in the eye. We still hug and kiss and love, all the same as before our D-day. Yes, labels can help us know where to head for understanding and assistance, but they don’t define him or us.
Normal or Extraordinary?
Catching up and sharing from the files of my ramblings. This particular set is from October 26, 2015.
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Normal is just a setting on a washing machine.
I’ve read it and heard it a million times over since our son’s autism diagnosis, but when I read that, I often think the truth is, all special needs parents really want is a chance at normalcy. Sometimes I wonder if that isn’t what all parents want: normalcy. I wonder this because I look around and I see people fighting battles of all kinds.
No one is immune to the pressures of this life. Some battle autism, some battle cancer. Others I know press on despite the challenges of dyslexia, ADD and ADHD. Some families live with epilepsy hanging over their heads, and others wonder when the next bout of chest pains will come for their athlete.
Some families wonder where the next job move will take them and how their kids will adjust to the move. Others wonder if they’ll even have a job next month or next week, and if not, how will they provide for their family?
Other families are looking at their growing children and wondering where they will attend college and how, as parents, they will pay the tuition; or if their students will join the military and if so, where will they serve?
We all have challenges of some sort. And I think we all hold on to the glimpses of normal we see in our family life. Perhaps it is those glimpses which get us through the next challenge and the next and the next…knowing that somewhere down in the depths of who we are as a family, there is some sense of normalcy and what that means for our family. Perhaps “normal” is different for each of us.
Perhaps it’s a dad and a son going out to do morning chores together, perhaps it’s that same dad and another son singing happily as they head to the truck to make a Sunday afternoon run to the grocery store. Perhaps it’s a mom and her oldest huddled around old photo albums looking for just the right baby picture to submit for senior honors, or the same mom and her youngest snuggled up as the littlest reads a story for the one who rocks her world.
It’s in these moments of what may seem all too normal to the outside observer, that I realize we are given moments of extraordinary to get us through until the next normal. I hope that I don’t spend all of my moments wishing for the normal, when I could be experiencing the extraordinary.
Our Son, Your Boy
Catching up and sharing from the files of my ramblings. This particular set is from September 3, 2015
I’ve mentioned before how amazing our community is about rallying around its youth. This is never so apparent as it is during the Avon Fat Steer Show. Young exhibitors work all summer long to ready their animals for show – washing; rinsing; leading; guiding; studying their feed and growth rate, making adjustments when necessary; raising their stock for eventual show and sale.
It is so refreshing to see our community take an interest in the young people who work so hard. Watching these kids in the show ring is nothing short of amazing. Truth be told, any one of those animals could very easily walk right out of the ring, kid in tow, leaving behind anyone who tried to stop them along the way. But for the most part, they do not. The endless hours spent in preparation are evident in the way that animal and owner work together. On the occasion that an animal acts up, or gets away from an exhibitor, they are never on their own. Everyone around the ring stands on the ready to assist.
Outside the show ring, friends and neighbors gather to catch up, not on markets and weather, but on life. This is where I see the epitome of community. Countless smiles and rumbles of laughter greeted me each and every time I visited the fairgrounds with our kids. Most often, I was flanked by both of our youngest, now aged 6 and 7.
Thanks to this amazing community, these kids don’t know a stranger at the fair. Even when all the sights and sounds and long hours at the fair have taken their toll on Ben, and there is simply too much stimulation for him to handle, not once did I get a disapproving glance. Those moments we took solace in our quiet spot, a chair with our cattle – those were the moments we retreated, the moments Ben needed to curl up and regroup in the safety of mom’s arms and lap.
While my son wrapped himself in a ball tighter than seems humanly possible and buried his face into arm as I gently squeezed the anxiety away, friends and neighbors greeted me with sympathetic eyes and a knowing smile – not an “I know what you’re going through” but an “I can see this is a time Ben needs you so I won’t speak, but just know that I’m here” kind of smile. I can’t explain the words which aren’t spoken other than to tell you these are the moments that refuel me. These are the times I am reminded that while Ben is our son, he is very much your boy and we are so completely in this together. And I cannot thank you enough.
I’m Back … for now anyway
Life has taken some unexpected turns over the last couple of years. HA! I have to laugh – isn’t that the understatement of the year? And I have to think it’s not just true for me and my family, it’s just life in general. Sometimes, things we enjoy and think we will never give up simply have to be put on the back burner because there are other things which need our attention. “Important” and “urgent” can come to define, even dictate what gets our attention, and sadly, this blog is often one of the first to go.
While I continue to write, those thoughts don’t always make it here. I want to say, “I’m sorry, ” but I really can’t do that in good conscience because it is a choice that I make based on where my family needs me most. Here, thespectrumscene, hasn’t been the answer to that of late and I’m okay with that because while I haven’t been “here,” I’ve been “there.” There is where my family has needed me. There has covered many miles, included countless bleacher seats cheering on our middle set, involved more sets of clues and puzzles than the mind can imagine while playing with our littles, and even some deep discussions while walking the path with our oldest. I wouldn’t trade these moments for life itself. This is who I am, who God made me to be, and I am thankful that while I am “there,” thespectrumscene remains “here” as my outlet for sharing my thoughts and our experiences not just as a spectrum mom, but as a mom; not just as a spectrum family, but rather as a family.
I can’t promise that entries will be regular forever, but I can promise that while I’m there, I’m thinking of here, and when the day allows, I’ll visit to share the joys and struggles, the ups and downs, and all that makes our family us. I hope that our experiences will encourage other spectrum families and remind everyone that regardless of the challenges, there are perfect moments in every day, even the ones we really have to search for them.
We Are Never Alone
Dear God,
Thank you for going to school, going to church, playing at home. I love you.
Amen
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This is the prayer of a little boy on 9/11/2016, a little boy we once were told may never be able to communicate effectively.
Fifteen years ago, I stood in disbelief as the events of 9/11 unfolded before us, pregnant with our twins and suddenly questioning everything I thought I knew about life and how we would live it. My hopes and dreams for the world our son and his unborn siblings would grow up in were being tested.
I shook my head, not able to comprehend the way our world had just changed and held my son tight as often and as long as he would let me.
Our leadership stepped up. President Bush reassured us, “I can hear you, the rest of the world can hear you, and the people who knocked these buildings down will hear all of us soon.”
America united and over time, peace in our hearts was restored.
Four years ago, I also stood in disbelief as doctors, therapists, and other professionals, told us our son may never be able to communicate with us, may never understand what we tell him or be able to express himself effectively, may never be able to build friendships or relationships of any sort. He may lash out at us. He may run away from us. He may never this or never that…my hopes and dreams for one of my sons were again being tested.
Once again, I shook my head, not able to comprehend the way our world was changing and once again, I held my son tight.
Diagnosis day is different for every family, and in fact, different for each person in that family as we all feel and process differently. For us, it was confirmation of something we already knew in our hearts. Yet, hearing the words still pack quite the punch. For me, it was the beginning of a battle in a war we’d already begun.
A month later, another initiative in this battle to hold onto our son and help him move forward commenced with Easter Seals’ Intensive Therapeutic Autism Program (ITAP).
ITAP’s director and her staff quickly became trusted confidants as we began traveling to Peoria for Ben to participate in their three hour program twice a week. Ms. Wiebler assured us that she could hear us, she could hear Ben, and after only a few days into the program, she already knew that everyone would hear him very soon. We united and over time, peace in our hearts was restored.
Life may never be what we once expected, but the peace the prayers of this little boy on the anniversary of an event so breathtakingly terrible brings to my heart reassures me that I am heard; my faith in our creator reassures me that he is heard; and the moments we slow down, allowing ourselves to both hold and be held reassures me that we will never face any battle alone.
thespectrumscene 