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What We’ve Lost

The rhythm of life feels different these days. Time has felt like it stands still. And then it speeds up. And then slows again. Endless days and weeks of sameness. At the same time, we’ve had an opportunity to focus on things we haven’t had time for. Some days productive, some not. Some days guilt-ridden for feeling like we’re wasting this time, the gift of these days. Or guilt-ridden for struggling when we’re ok. Or are we even ok? Some days yes, other days maybe not so much. Everything is the same but at the same time, everything is so very different.

The impact of this time will be unique for each of us. Did we just survive? Did we do ok? Did we end up thriving? No answer is right or wrong. We all do hard things differently. I do know I have been ok because of the people who love me. Leaning when I need to lean and offering that same grace. The ebb and flow of human connection, often at its most beautiful when things are hard. We will be ok together.

And if this isn’t the time to thrive, maybe the thriving will come after we return to our old lives? You know that saying “you never know what you have until it’s gone?” We all feel that now. I particularly felt the depth of that loss yesterday. I had a socially-distanced, masks on, outdoor meeting for Best Buddies. I set an alarm, got up and showered, got dressed in something other than lounge pants, blew dried my hair, put on a little make up, grabbed a granola bar and coffee and rushed out the door. And honestly, I had not felt that alive in a long time. I didn’t realize how much I missed all of this until I fought rush hour traffic, drank my coffee and saw my reflection in the mirror with some lipgloss on.

Was it because it was my old routine? Because a morning like that signaled a productive day? A chance to connect and do something I loved? A reminder of what used to be? Today I settled back into quarantine life. And that was ok too. Because I had that glimpse of “before” and what will be again.

I know I didn’t know what I had until it was gone. But I actually think author Clarissa Wild said it even better when she said, “People say you don’t know what you’ve got until it’s gone. Truth is, you knew what you had, you just never thought you’d lose it.” I think that is one of the greatest truths I’ve ever read. We never thought we would lose this.

I think we all expect to experience big losses at some point. The loss of love, the loss of life, the loss of security. An unexpected diagnosis or news that changes everything. Those soul-shattering times with a hard dividing line of your life “before” and “after.” And we are terrified of those big losses, knowing the deep grief and struggle and irreparability of life “after.” They change the lens through which we forever look at life.

But this? Not being able to run out the door with your coffee and fight rush hour traffic to get to work? Getting our kids up and fed and tucked safely on a school bus? Rushing home to make dinner and rushing back out to sports or scouts or dance? Going to baseball games and concerts or out to dinner? Shaking a hand or giving someone a hug? We never thought we would lose this. And yet here we are. Grieving. Growing. Being ok. And sometimes not ok. And it’s all ok.

The thriving has to come when we’re on the other side of this, doesn’t it? When we appreciate the rushing. When we appreciate the fullness of our lives. I think it has to. Because we know what we had. And we now how it feels to lose it.

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Sweet Memories in Quarantine

May this be one of the sweetest memories I have of this time in quarantine. Every weekend morning, I peek outside our bedroom window and see this. Jason and Ian on the deck. Jason with his coffee, Ian setting up Connect Four. And they sit and play while Joey is sleeping and I get my own cup of coffee.

Usually our mornings would be filled with getting ready to go, packing up for what the day has in store. I do feel that we are missing out on so much living right now. The joy of being and doing and connecting. Being carefree about just being with others. But I know that I am not ready for that yet. That I could not feel carefree right now. Masks and outside and 6 feet are the best I can do.

Because I am still scared. Of one of us getting sick. Of someone I love getting sick. Of Ian being high risk. Of knowing what the worst case scenario looks like. I have said it before but we know what it looks like to see your kid in the intensive care unit on a ventilator.

So home is where we stay. Our home that now has an even deeper meaning for us. It will forever be our safest place. So until we can embrace our old life with all its joy and connection and hugs, we continue to shift our focus, embracing this precious gift of time. Our Saturday mornings on the deck, drinking coffee and playing Connect Four.

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The R-Word: Then It Became Personal

That’s so “retarded.” You’re such a “retard.” Retard… one of the few words that physically hurts me when I hear it. My heart aches; my stomach clenches; my eyes sting. It always takes a beat before it registers; did someone really just say that? As a special educator, I especially hated that word. Then 11 years ago, it became personal.

The time to give birth to our second son was here. I remember back to those days where my only worry was having 2 kids, and how I was going to be sleep deprived and still have to get my older son off to preschool. Even when I went into labor the day before Easter, I kept thinking, with a twinge of sadness, that our older son would celebrate Easter without us. Searching for eggs and his Easter basket… the rituals of the new beginnings that spring brings. Little did I know, the newest beginning of them all was nearly upon me.

As I lay on that table, exhausted from 32 hours of labor and 4 hours of pushing, I birthed our son into this world. And all I heard were whispers. All I saw was a bunch of people standing over our brand new son. My husband went over to meet our baby and came back to me and I will never, in all my days, forget the look on his face. I cannot describe it in words but it is etched into my memory. If I close my eyes, I can see his face so clearly… even he could not say the words to me. I begged him to tell me what was wrong and he kept telling me, “Nothing’s wrong… nothing’s wrong.” But his face told me he was lying. I think he was trying to protect me. Let me hang on to the last few seconds of thinking that my biggest worries were two kids, sleep deprivation and getting our older son off to preschool.

I finally cried out, “Will someone please tell me what’s going on?” And a nice NICU nurse came over and in a sing-song voice told me, “I feel like we’re talking to everybody else in the room but you!” I remember feeling so annoyed because she was so cavalier, like she was asking me if I’d like to go get a cup of coffee. I knew she was going to rock my word and here she was, so upbeat. Truth be told, I don’t think there would’ve been any right way to share that news but in that moment, the irony of upbeat and soul-crushing was too much to bear. Then she finally said the words, “Your baby has some markers that lead us to believe he has Down syndrome but we have to run some tests to be sure.” Someone finally said it. And I went numb. I think I said, “Ok, ok, ok…” about fifty times. A mantra of sorts. Ok, ok, ok. I couldn’t think, but I could feel. And all I felt was fear.

They told me our son had Down syndrome before I even held him. Before I even saw him. Did he have hair? Did he look like his brother? Was he short and chubby? Was he long and lean? Were his eyes closed or open, taking in the world? They handed me a diagnosis, and not my son.

All the fears, all the stereotypes, all the worries. What would his life be like? What would our life be like? What would this do to our older son? The unknown terrified me. I could only see Down syndrome. I could only see what I thought he would not be, what I thought he would not do.

And then, it seemed his birth day wasn’t done with me yet. His oxygen was low and he was taken to the NICU; they heard a heart murmur and ran some tests. When they escort you into the parent room, you know they’re going to rock your world again. And when the lady opening the door for you has a “Your Child Has a Congenital Heart Defect” booklet in her hand, you know that your life will never, ever be the same. Our son was not even 20 hours old when they told us he had 3 holes in his heart and something wrong with his valves and would need open heart surgery as a newborn. More fear.

I remember that night, sitting in the corner of the NICU, with the curtains drawn all around us, telling my husband, if we could stay like this — all of us tucked safely away from the world — that we would be ok. And it was in that moment, rocking our son in that safe little corner of the hospital that I saw him. Really saw our son.

Those hours gave way to days and weeks of getting to know him — Ian. As he began to unfold himself to us, I got to know our son. I would look at him and say, “You. Are. Ian.” I realized that I did not have a “baby with Down syndrome”… I had Ian. I could have never known in those early days that he would give my life even greater purpose, perhaps its greatest purpose.

He makes me want to move mountains for him, to show the world — HE IS IAN! He is fun and funny and smart and capable and loving and full of so much joy! He is not a label. He is not a stereotype. He is not defined by an extra chromosome. He is not scary.

But when people use the r-word, they instantly dehumanize our son. They make him a diagnosis… something scary, something to be afraid of, something different from them. I know that fear. I lived that fear in the beginning. And look at what I have now that I know him… I have Ian and all his glorious lessons on life and love and perseverance and what really, truly matters.

When people use the r-word, they make our Ian “less.” And when you do that, you miss out on meeting one of the most incredible people you’ll ever know. You miss out on seeing the person. What would happen if others started to see people, rather than a diagnosis? Rather than a stereotype? Rather than someone “different”? What would happen if people started seeing people for who they are and not for what others think they are not? Would they see a future co-worker? A friend? A classmate? A roommate? A neighbor?

Words matter. They have the power to uplift or crush. They can empower or dehumanize. They can instill confidence or fear. I know. Because the words “Down syndrome” brought me fear in the beginning. Until I saw our son, until I knew him. And when someone uses the r-word and makes him “less,” they miss out on his light. His light that illuminates all darkness; his light that has shown me the way. He makes everything wrong, right; makes everything sad, happy; makes everything hard, worth it. See his worth. See that words matter. See that words have power. See him. See our son. He is Ian.

Originally published at: https://www.bestbuddies.org/2018/04/26/thenitbecamepersonal-2/

Photo credit: Diana White Photography

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Memories: Going Into 3rd Grade

I created this sacred space as a place to share our journey. I am not sure just yet where it will take me. But as memories pop up, I see how far we’ve come and I want to tuck them into this space as well. Not just preserving them but also reminding me how much we’ve grown. Well, mostly how much I have grown. So from time to time, I plan to share what I said then and where we are now. Here goes…

Then: June 2017, Ian was 8, going into 3rd grade

Down syndrome and special needs friends, while I’ve been loving my week at Scout Camp with Ian, it’s also shown me that we may be at the point where we need to share with other kids more about his “disability.” He’s had a blast but there have been moments where kids have asked why he talks “funny” or that he should be more clear (right in front of him) or don’t have as much patience or understanding of why things may be different or harder for him. How did you all handle this phase of parenting?

When Ian was a newborn, I used to have a “speech” prepared when I had to share that Ian had DS so I could set the tone for how others saw my son. So I am wondering if I need to do that now? Then I was thinking that it is really Ian’s story to tell… maybe he needs to be the one to explain that he may need to repeat something or need a helping hand? Because after all, it IS his story.

And today he was really good about telling the kids that he goes to speech and OT over the summer and that he has speech at school and with Ms. Ahna. He shared how he’s working on speaking more clearly and slowing down. And one warm-hearted little guy even told him, “Ian, I went to speech too!”

But then I think maybe if we share about the DS first that kids will see him as “different”… but then they are already starting to see differences. Ugh. And I’ve also noticed this stuff lately in other unstructured social situations. But the one bright light I see with older kids is how much patience and empathy and understanding they have for kiddos who may need some extra help and that makes my heart soar for the future.

Sooooooo, this long post is to ask for advice… how do I help other kids see and accept what may be harder for Ian without making them see him as SO different? And in keeping it real, this hurts my momma heart so bad… a growing pain for sure. And this parenting gig, typically-developing or not, is HARD. But I also know that Ian’s light shines bright, he never gives up, never gets down, and moves onward and upward. And so we go…

(And this is Ian imitating Marv in “Home Alone” when he had the spider on his nose)

Now: June 2020, Ian is 11, going into 6th grade

That week was probably one of the most painful times I’ve had as Ian’s mom. I rode home in the front seat with tears silently streaming down my face, my boys unaware in the back seat. I felt a physical pain deep in my chest. I had blissfully existed in this world of inclusion and all of this was like a sucker punch. I was totally unprepared for that time when other kids saw Ian as “different.”

Throughout Ian’s lifetime, I have had to deal with comments, questions, and ignorance countless times. I have had to feel that pain of someone seeing my son as less, as different in a way that was not celebrated. But this was the first time that Ian had to endure that. That he had to answer those questions. That he felt different.

I learned a lot from that week, as we usually do from times that stretch us. I learned that around the end of 2nd grade and the beginning of 3rd grade is when kids start to notice “differences.” Their questions don’t arise from being hurtful but from just not knowing. I think sometimes we don’t talk about differences because we want kids to see each other as the same. But I think it ends up being confusing. Kids do see that someone is different from them but don’t understand what that means or why we don’t talk about it. So that wonder and confusion hangs out there, rather than acknowledging that we all want the same things… to be included, to belong. That we all want to be seen as equal regardless of our differences. I wish someone had told me that around age 8 is when kids start to notice and ask questions and that that is a perfect time to talk about the beauty of difference and diversity.

The best part, three years later, is that it is Ian who does the educating. He has done presentations at school for his class and other classes for the past three years. He has presented about Down syndrome to a football team and spoke about his dreams in front of over 400 people. He has become his own advocate… sharing about his extra chromosome and almond eyes and, of course, his love of Home Alone movies. Spreading the message that even though we are different, we are the same in all the ways that matter. Three years later, Ian has shown me that he’s got this. He found his own voice. And he keeps on moving onward and upward, taking me along with him.

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Home Alone

I did it. Well, Ian did it. He stayed home alone for the first time today. It was only for about fifteen minutes and part of it was spent reading a book over FaceTime with Grammy. But he did it. He stayed home alone while Joey and I took the dogs for a walk.

When I think about all the big dreams I have for Ian, what I want most of all is a life of his own choosing. Because isn’t that the pinnacle of adulthood? Making your own choices? But those big dreams don’t just happen. Like everything else, it starts with a baby step. And then another one. And another one. And if I want this kid to live on his own, he has to learn how to be alone. So today, he did it. For 15 minutes. But he did it.

I find my growth as Ian’s mom has sometimes been linear and predictable, and at other times I am stretched. I treasure linear and predictable for the gift they are. Those times of being stretched are often painful, mostly when I am battling ignorance and stereotypes defining my son rather than him defining himself, when I need to push back against what the world sees as his ability and worth.

But as he gets older, I am finding that I need to be stretched in different ways too. That it is me who needs to let him go do, to figure things out, to create the life he wants for himself. Fellow mom and incredible advocate Beth Foraker shared the perfect term for this at last year’s National Down Syndrome Congress Convention – giving my son “the dignity of risk.” I have carried that with me, that reminder that he deserves that opportunity. And I need to be the one to give it to him.

So that’s what we did today. He stayed home alone. And do you know what the best part was? When he was done reading with Grammy, he snuck his Nintendo Switch. When we returned from walking the dogs, I crept in to see what he was doing and snapped this photo. Isn’t that one of the best parts of independence, being able to do what you want? He was home alone and wanted to play video games, so that’s what he did.

Home alone. A baby step, more for me than Ian. The dignity of risk. And the reward too.

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Adulthood. And a gentle push.

I spent three hours this afternoon in another wonderful “deep dive” session with Dr. Mary Morningstar and the National Down Syndrome Congress. This one focused on transitioning students from high school to adult lives, which is not only my professional passion but also a personal one. Transition into adulthood represents the culmination of over 13 years of hard work by families, teachers, service providers, support staff and, of course, the students themselves. It is the whole reason we do this work, day after day, year after year. Educators passing the baton as our kids grow. It is the finish line – what life looks like when all the hard work of school is done.

And while I learned about transition resources and ideas, I was unprepared for the one thing that I should have been prepared for – a mindset shift. I think of transition as my son transitioning into his adulthood but I was leaving out a very important term that Dr. Morningstar used often – an inclusive adulthood.

That struck me. Because sometimes I think I see Ian in his bubble, or maybe it’s my bubble. My quest as his mother to always protect him, especially because in some ways he is very vulnerable. Or maybe it’s me who is vulnerable? No matter whose bubble it is, I saw him in it. Safe. Structured. Ok.

Today made me really think of the future I imagine for Ian, the one I want for him and the one he wants for himself. The question is, had I really, truly thought about letting him live it? Dreams and reality intersecting can be really scary.

Dr. Morningstar shared a quote from two parents of a child with a disability about the importance of community and it resonated with me. Drs. Ferguson and Ferguson said, “The more hands there to catch him when he falls the better. We firmly believe that the more deeply embedded Ian is in the life of his neighborhood, workplace and the city in general, the more people there will be who will notice if he is not there and who will work to keep him there as a member of the community.” This speaks not only to their son and to my son, but to all of us. A sense of belonging and, conversely, a palpable void when we are not there.

I needed this nudge, this gentle push, this mindset shift. An inclusive adulthood. Ian, a thriving member of our community, valued and included. The way he is in school now. Expecting the same for him as an adult. Being vulnerable is a legitimate emotion, and so is fear. But they can also hold you back. And I won’t be the person who holds my son back. The more hands, the better. Now I just have to let go of Ian’s hand. I can do this. And so can he.

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I Am Not Ready.

Thursday was my last day sharing a workspace with this guy. Or at least I think it was the last day. Maybe a small part of me hopes it’s not. I am still feeling a little scared and vulnerable right now.

At the beginning of all of this, I was terrified. We didn’t leave our house except for Jason picking up groceries, which he then spent an hour sanitizing before it all came into our house. We sprayed off boxes and packages before we opened them and then wiped down whatever was inside. We obsessively washed our hands all the time, even though we didn’t go anywhere. My kids got so sick of me saying, “Alexa, set the timer for 20 seconds.” But once we brought in the food and packages, we felt safe. Back in our bubble.

I miss our old life so very much. I feel like I should feel happy that things are opening back up. Talk of baseball, maybe marching band in the fall. Eating outside. Stores opening up for nonessential things. Travel. Togetherness. I miss all of that so very much.

But it has all changed for me. I am scared to do those things. I find little comfort in things opening up because it makes me feel even more vulnerable. We have masks hanging up by the door, paper masks in the van in case we somehow forget ours from home, disposable gloves to pump gas or get money from the ATM, hand sanitizer in cup holders in the car. I find Clorox wipes online at 3am when I can’t sleep. I find hand sanitizer that way too. Delivered right to my door, safe. I wear masks whenever I leave the house, even when I am outside. I stay at least six feet away. I send my love without a hug.

I think that the loss of security and freedom of my old life is one of my greatest losses during this time.  I see others, more confident than me, resuming the life I so desperately miss. But I am not ready. Yet.

As we learn more, I feel better. And we have learned a lot more. But in just four months, we have lost nearly 120,000 people in the United States. We lost 57,000 people in all of the Vietnam War. And we have now lost twice that many people – in four months. That is staggering to me, that kind of loss. And I know I have to learn how to life with this fear, with this uncertainty. But I think I am struggling most because I know too much. Because I know what the worst case scenario looks like.

I know what it’s like to see your kid in the intensive care unit. Sedated and on a ventilator. Completely and utterly helpless. Praying to God for mercy and begging medical professionals to help your child. One day, I remember walking into the ICU after Ian had a pulmonary hypertensive crisis, which is essentially when his lungs seized up and pushed his blood out, rather than giving him the oxygen he desperately needed. They gave him medicine to paralyze his muscles to force his lungs to do their job. I had just stepped out of the ICU and strolled back in to all these people around my son, exhaling. I am grateful that I didn’t see that, that moment in time where they saved my son. But I saw the aftermath, and that terrified me enough. I remember those ICU days… the roller coaster, the waiting, the helplessness. I remember it like it was yesterday. And whenever the memory starts to fade, the smell of that damn hospital soap brings it all back. I have lived the worst case scenario.

I never want to ever experience that again — my greatest love and my greatest fear, all in the same bed. So here I am and here I stay. At home, safe. I will likely have to be pried out of our home and gently shoved back into life. I joke that we used to never be home and now we never leave.

I miss the joy of going and doing. And I will get there again. I hope. I have pushed back all our doctors’ appointments to the fall, thinking if we are back in school then, we can go to the doctor. I am making hair appointments for late August for the same reason. Rationalizing when and how to push myself back into our old life.

So maybe Thursday really was my last day sharing a workspace with my husband. Time will tell. But I will miss it. For as much as our sense of order and organization were at odds, we were together. Safe.

One day, I will need to move forward. But for right now, this is where we will stay, where we feel safe. Home. Together. With my greatest loves, tucked away from my greatest fear.

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Saying Goodbye When You Can’t Say Goodbye

Tomorrow is Ian’s last day of elementary school. He has been a part of his school community since he was 3 years old. Our school has lovingly guided Ian (and me) onward and upward for nearly 8 years. And tomorrow, with no pomp and circumstance, with no culminating event, it is just over.

Not only do we not get to say goodbye to the only school we’ve ever known, Ian’s best friend and most favorite person in the whole world is headed to a different middle school. They have been together for 6 years, every single day. They have a bond that feels heaven sent. I know it is an answer to my prayer. A very best friend. We have known this day was coming, these boys going to a different middle school. But I think somehow I believed it wouldn’t really happen, that it couldn’t happen. Maybe because it seemed so far away that it just didn’t seem possible. But tomorrow, that day is here.

Change and loss. Change always comes with a loss, for the new only comes when the old is shed. But this time, the change seems to feel more profound because of the loss of goodbye.

When it became increasingly clear that this was how our year would end, I wondered if maybe this would be easier. No rituals of goodbye reminding me of what I was losing. I thought that not being able to say goodbye would be better. And maybe it is. To just have something end. To not have to be reminded in a big way of what a big loss this is – friends, security, home. But now I am not so sure about that. I am not sure about any of this.

Because here I sit, alone on my deck with all these feelings and nowhere to put them except on this page. I can’t look into the faces of the people who have changed by son’s life and thank them for that. I can’t look into their eyes and thank them for making my dreams for our son come true. To remind them that their hard work is the reason he is thriving. That I will forever be grateful that they made me feel safe and secure sending my son to school, knowing he was loved and challenged and valued. I can’t say any of this to the people who helped build the foundation of my son’s life. It is just over.

Now it is time for me to start over. And that is hard and scary. New relationships. New beginnings. When I didn’t even have an ending. When we didn’t even get to say goodbye.

I just want my son to be happy. I want my son to have friends. I want my son to belong. I want my son to be surrounded by people who want to be around him. I want my son to be around people who see his light. Because we had that – all of that. And that is so very hard to let go of. I don’t want him to be seen as a little boy with Down syndrome. I want them to see Ian.

So here I still sit, with all these feelings. And I honestly don’t know how to feel. I just know that I feel a lot. This past week, as we have virtually said goodbye, I know Ian is feeling it too – all these feelings with no names. I know he feels this great loss. And when it became too much and I could feel its weight, I just asked Ian if he wanted a hug. So that’s what we did. A long, silent hug. A gentle exhale of emotion that lingered as we felt all of it together. And then we moved on. Until the next moment we needed a hug. Then exhale, move on, repeat. Together.

Tomorrow, we start over.

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Ninety Days in Quarantine

Today marks 90 days in quarantine. It started almost like a break. Two weeks of home before we rushed right back into life. And we treated it as such, as the gift it was. Each day we tackled projects we hadn’t even had time to think about for over a decade. Feeling accomplished, we’d take a late afternoon nap and then enjoy a nice meal or movie each night. A break. Restorative. Home. Settled. Together.

Then, out of nowhere, we got the news our sweet Sunny had terminal cancer. And all of a sudden, the coziness of March seemed dark. Heavy. I’ve always said that dogs give you something people cannot. And I was not sure what I was going to do without my faithful sidekick of over 12 years. Each day was spent on high alert, wondering if today was the day. The end. Then schools were closed for another month. What seemed like a break now seemed daunting.

As March slowly faded, light began to peek around the corner. Warmth began to seep in. April. We celebrated our Ian’s birthday. Together. Springtime took hold and by the time we got word that we would not be going back to school this year, we had accepted the inevitability and built new routines. Comfort is found in routine, even if it’s a new routine.

But then as May eased into June, the end loomed. Big changes. The end of the school year for Joey. Bigger changes for Ian… the end of elementary school, the beginning of middle school. I’m still working on putting into words what all that feels like. Big changes in the midst of endless uncertainty.

So here we are. Ninety days later. Our sweet girl is still with us, our constant. Our new puppy Buddy has brought the joy that only a puppy can bring, reminding us that the world is wide and wonderful. And that it’s best shared with the ones you love. A gift of quarantine.

It feels like a lot has changed, and sometimes it feels like nothing has. Time has moved quickly and stood still. There has been loss and there has been gain. Being rejuvenated, being exhausted. Missing the connection that fueled our days. Feeling grateful and questioning. Deep emotions, the kind we breathe in and out.

Ninety days in quarantine. Change and sameness. Ebb and flow. Loss and gain. Life. Or at least how it feels right now.

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Middle School

A memory popped up recently and it spoke to my heart as Ian gets ready for a big new phase in his life – middle school. He doesn’t see it the way I see it. He’s ready to rock it, like he does pretty much everything. But me, being older and wiser, I know that a seismic shift is about to happen. I just watched a video from last year when Ian won an award at school for exemplifying JOY and I love how everyone said his name in unison as it was announced. This sweet time in our life of elementary school, when inclusion often happens because everyone is always together, is coming to a close… and that makes me sad for more reasons than typical nostalgia at the passage of time.

We have Ian’s special ed extended planning meeting with his new middle school team coming up soon, to talk all things Ian and middle school. And when I asked Jason the most important concern he has about Ian in middle school, it was the exact same as mine – will he have friends? Will anyone want to sit at lunch with him? Will there be a kid who wants to sit with him because he’s a fun kid who is a great friend? Will there be someone who always makes sure he has a place at the table, who saves him a place at the table? Will there be someone to walk with him as he navigates the busy hallways? Will there be someone who waits with him as he figures out the fast-paced PE locker room? Will there be someone who looks out for him, because that’s what friends do? Will there be a Joey?

I am not worried about accommodations or IEP goals or 6th grade curriculum — I want my kid to have friends. Because THAT is the essence of humanity… connection. I want him to have a life outside of our family. I want him to have someone to text, someone to hang out with after school. I don’t want him to feel different. I don’t want him to be alone. I don’t want him to be lonely. I want him to have a friend. I want him to have a Joey.