Today’s Our Land post was authored by the fabulous Allie Smith of The Latchkey Mom. Allie is awesome – seriously. She’s funny, introspective, deep, a great writer, and an amazing mom. Each summer, she takes her four kids on a road trip. By herself, and on purpose. She journals her trips at Road Warrior Mamma and her travels this summer meant that I got to meet her and her kids for dinner one night! The kids got along great…
…as did Allie and I…
I’m proud to call Allie a friend and so honored that she’s contributed to Our Land with a most excellent piece. I hope that you’ll enjoy it.
Our Land: The Little Bus
by Allie Smith
I’m the mother of four children, one of whom, Barrett, has autism. The family schedule can be quite hectic. My kids currently attend three different schools, which means three different buses. Lucky for me, Barrett rides the little bus and it comes right to our driveway. I have come to love the little bus – the little bus and I have come a long way.
When Barrett started special needs preschool, I remember being asked at his first IEP meeting if we wanted bus transportation. I knew instantly, without asking, that they meant the little bus. After all, IEP’s, special education, behavioral plans and various therapies were becoming a part of our vernacular. So of course they were referring to the little bus.
I said, “No.” No. No. No. I wouldn’t even consider it. I’d drive him. At that point, I truly believed that Barrett would never have to ride the little bus. He was going to get past autism. He was going to be alright. Also, I had a hang-up about the little bus and all it represented. I remember all too well the jokes from my childhood about “riding the little bus to school.”
My middle school had a special needs classroom. At some point I’d volunteered to work in the classroom and I’m not sure why or how it came to be, but once I was there, I wasn’t much help. I was terrified. The teachers were nice and tried to help me relax, but I couldn’t. I remember having to pick up a piece of candy that had fallen out of a student’s mouth and I was completely freaked out. Can you imagine? Picking up that one piece of candy offended me. Then I became a mother, now that’s a nasty job. There are no limits to the grossness of what I’ve had to do for my kids over the last thirteen years – sometimes really disgusting things, without even batting an eye. So thirty years later, I’m embarrassed that such a simple thing horrified me and sent me running for the hills. But it did.
And I never went back.
Now as the veteran of many special needs classrooms, I’ve considered this incident more than once. I feel like maybe that experience was some kind of foreboding. There was a reason I wanted to be in that classroom. There had to be, but I have absolutely no clue what it was. I often speculate how much of life is predestined, but that’s another story, one which I’ll spare you. I also wonder why those teachers didn’t work with me. I wish they’d asked me to come back. I wish they’d encouraged me and helped me to understand. Imagine what a difference that could’ve made – for me and for those kids. Instead, I spent my life looking the other way, until it was my life and I couldn’t run away – even though, believe me, there were times when I really wanted to!
Rather than face life on the little bus and our reality, I drove Barrett to school. It was a combination of denial, arrogance and ignorance. I had a lot to learn.
During Barrett’s last year of preschool, he was in an autism classroom at an elementary school that had a variety of special needs classrooms. There were classes with mild delays that also included typical peers to enhance social skills – Barrett’s twin was in this class. At the opposite end of the spectrum, some classes were equipped with wheelchairs, feeding tubes, breathing apparatuses and defibrillators. They were the real deal. Whenever I’d see those poor kids, I’d get a queasy feeling in my stomach and look the other way. I simply couldn’t face it. Until one day, it was right in front of my face and I couldn’t run.
At Christmas time, the parents were invited to join their children at school for the class holiday party, which was in the gym. It was fun and appeared to be like any typical school party, except for some crying and a few behavioral flare-ups. I remember being grateful for the typical peers, because they helped make the party more festive. More normal.
About thirty minutes into the party, the other special needs classes arrived. I had no idea they were going to be there and that old uncomfortable feeling came over me. I could feel the heat rise up into my face, as my heart skipped a couple of beats. Being in such close proximity to the kids, I was forced to look a little closer.
I noticed one student, who was in a wheelchair, was wearing a headset and clearly rocking out to some music. Some of the other wheelchair-bound students were smiling, watching the children run around like maniacs. Sadly, there were also some who seemed completely oblivious to what was going on.
I began to cry. My heart ached for those children, but honestly, I was also crying because I felt sorry for myself and for my son. It was like a slap in the face as I realized that this was our life. My child was in special ed and possibly always would be. Regardless of how Barrett looked, and he is gorgeous, he was on some levels, just like those kids in the wheelchairs. He’s living with a disability that prevents him from having the “normal life” most of us dream of for our children. He’s handicapped and these were his people.
It hurt. It really hurt. I tried to distract myself with my young daughter. I played on the floor with her as I pulled myself together. She was having so much fun and was oblivious to the fact that the chemistry in the room had changed. In fact, none of the kids seemed bothered by their party companions. Oh, to have that innocence again, because let me tell you, I wasn’t the only one in that room who was uncomfortable. There was a definite decrease in the noise level because the adults were no longer chatting – the tension was kind of thick.
Then, quite frankly, I was embarrassed. Shame on me. How dare I? I talked the talk of tolerance, preaching to everyone that my child and others like him should be treated the same as all children, but I wasn’t walking the walk. Wow, talk about an “aha” moment. I swear, in that instant, I began to change. I pulled myself up, even though I was shaking, and marched right over to the teacher who’d brought the class to the party. After introducing myself, I asked about the student’s headset. She explained that he was her “little rock star.” He loved to listen to music and it helped calm him. Well, that was no different from my son. I’d paid hundreds of dollars for a special headphone for his music therapy. Then she told me cute little things about each of her students and I began to relax – a little.
I couldn’t run anymore. If anything, I realized that I had to be grateful for what we did have, because we were lucky. It’s all about perspective. Our problems, although certainly not small, paled in comparison to the struggles of some of these students and their families.
Special needs aren’t contagious. I knew that, but my fear kept me from opening my heart. Maybe if I’d understood special needs better, it would have been different. I desperately wanted to make people comfortable around my son, but first I had a lot of work to do on myself.
Now this was, and continues to be, a process. Acceptance of sad and difficult circumstance is hard when it involves your children, especially when it’s something you can’t control. It’s a daily practice involving baby steps. After the party, I reconsidered the bus issue. It was time. Bear’s teachers assured me that the boys would love riding the bus. I felt guilty putting Hunter on the bus, but it was the only practical thing to do. I rationalized that no one would know Hunter was riding the bus, because it was coming so early (6:30 a.m.!). Also, most of my neighbors worked, so he’d go unnoticed in the afternoon as well. Our secret would be safe. Now remember, I said baby steps!
The cat was out of the bag on our first morning. Here’s a little tip, the little bus is really loud. When the bus rolled up on that first morning, we heard it coming before it even turned the corner to head down the hill to our house. I swear, it sounded like a jet plane taxiing down a runway. Honestly, it was louder than the garbage truck. You should have seen all the lights in the houses on our cul-de-sac turn on that morning. I can’t even imagine what my neighbors were thinking as they were loudly startled from their slumber. Standing in our driveway, I saw everyone peeking out their windows. We were busted. So much for anonymity.
Barrett still rides the little bus and we have embraced our uniquely special life, which is full of miracles. Over the years, we’ve gotten to know our bus drivers pretty well, and they’ve often saved me when I’ve been late for pick up or drop off. They look after my boy and deliver him safely each day. They give him holiday gifts and he serenades them while they ride (Bear loves to sing).
I’m still a work in progress, but I’ve come a long way. I’ve chaired the PTA Special Needs Committee at our school. I raise money for the Special Olympics, in which Barrett competes. My children attend the games each spring to cheer their brother on. They beg to be volunteers on the field, although they’re not quite old enough yet. They tell everyone how cool the little bus is and express jealousy that they don’t get to ride it. I just laugh. They are not afraid and I know they will never look away.
—
I’m so grateful to Allie for sharing her story and her perspective for this Our Land series. Each time I feature a submission, I feel like I understand the world and its people – including myself – a little better. Here’s some more about Allie:
In addition to writing regularly at The Family Legacy Center, she’s contributing book reviewer at Chick Lit Central and a columnist at My Forsyth Magazine. Her writing has also been published on the Huffington Post and at Scary Mommy. Be sure to follow Allie’s blog at The Latchkey Mom.
by Kristi Campbell
Emily - I think many of us with special needs children need time — and yes, sometimes this take years — to process the acceptance of having a child who doesn’t fit the “mold” of what we envisioned. And, I think it’s so honest of you to share your thoughts on this (and I love how that little bus was so symbolic of working towards that acceptance). I know I went through this and it wasn’t until I volunteered to work on our SEPTA (Special Ed Parent-Teacher Association) where I felt I truly ‘came out’, so to speak. I love how you ended this too, showing us that your other children are not ashamed to support their brother…beautiful!October 7, 2014 – 9:13 pm
Allie @ The Latchkey Mom - Thanks Emily, I really appreciate your comments. And I agree, it can take years!October 8, 2014 – 8:26 am
Kristi Campbell - Emily, I know Allie already replied but I just wanted to add a thank you and agree that it takes years. I still struggle with it at times – maybe because Tucker’s so social with other kids (adults are another matter). Also now I need to find out whether we have a SEPTA! Thanks for that!October 9, 2014 – 10:42 am
Janine Huldie - Definitely tugged on my heartstrings tonight and will admit that readily now, but still love how you said you are w or kin progress, because I think we all are and can’t thank you enough for sharing about Barrett here tonight.October 7, 2014 – 9:58 pm
Allie @ The Latchkey Mom - Thank you Janine!October 8, 2014 – 8:30 am
Kristi Campbell - I agree, Janine! 🙂October 9, 2014 – 11:20 am
Mike - What a terrific post Allie and not only has your evolution as the mother of Barrett been heartwarming and courageous it also shows just as much in your writing. I’ve learned a lot about autism from following Kristi’s blog for about a year now and the Our Land series is absolutely beyond reproach. You had mentioned your very early experience and I too had one similar to that in middle school as I was a tutor for other students (my peers). I quickly evolved as a young adult in a positive way when it came to handicapped or disadvantaged children. I love that even now, all these years later I can continue to learn and grow within myself in understanding these absolutely beautiful children through mothers like you. My blessings to you and your family and thank you so much for sharing. Also, thank you for sharing her with us, Kristi 🙂October 7, 2014 – 10:15 pm
Allie @ The LAtchkey Mom - Thank you Mike. I am so impressed with kids today. Bear is now in Middle School and there are 13 peer volunteers in his class (of 6) and they are wonderful. They never seem the least bit phased and frequently advocate for their special friends.October 8, 2014 – 8:33 am
Kristi Campbell - Mike, I miss you! It’s so good to see you over here. Truly. I love that you were a tutor to your peers and that it helped to shape you toward having more empathy for the students who were different from you.October 9, 2014 – 11:22 am
MyTwice BakedPotato - I cried and smiled as I read this! You have a beautiful boy and I so relate to your feelings of avoiding and then embracing the little bus. Thanks for sharing! This one is a keeper!October 8, 2014 – 1:08 am
Kerith Stull - This is such an important topic to talk about within our special needs parenting community. We all talk about inclusion and acceptance, but I think we all have felt that discomfort being around other special needs kids. My daughter with moderate cerebral palsy is 18yo and I’ve only recently in the last few years become more comfortable around her friends at special needs activities enough to reach out to them, interact with them, and treat them as I would want others to treat my daughter. Let’s keep this dialog going and talk more often about it!
(P.S. Maybe someone with a child who uses a wheelchair could speak to this more directly and personally, but, quite honestly, I was uncomfortable reading “wheelchair-bound” in your piece. They are not strapped down to their wheelchair as users often were 100 years ago. Surely a different term could be used that more respectful reflects wheelchair users. Just throwing that out… one SN parent to another.)October 8, 2014 – 9:30 am
Allie @ The Latchkey Mom - Thanks Kerith. I meant no disrespect – and you are correct, a different term would be better. In my deference, a few did have restraints, because they didn’t have the body control to hold themselves up.October 8, 2014 – 1:52 pm
Kristi Campbell - Thanks Kerith, and thanks for pointing out that there may be a better term than wheel-chair bound. I didn’t catch that one (we are all growing more empathetic) and I know what you mean about the discomfort at times. And I agree that we should keep the dialog open and honest – it’s really what’s going to help all of our kids the very most.October 9, 2014 – 11:23 am
Kerri - Oh I get this. I so get that feeling of not the short bus, please. And looking at other children and thinking well it’s not that bad. I think it is a very scary but long process but the important thing is to keep working towards it not hurting so much.October 8, 2014 – 9:54 am
Allie @ The Latchkey Mom - Thanks Kerri. I do regret that sometimes it takes seeing more difficult situations to feel better about my own. It sucks.October 8, 2014 – 1:55 pm
Kristi Campbell - Here’s to us all working toward these things (which are truly conveniences so often but also come with so much stigma) not hurting. Thanks, Kerri.October 9, 2014 – 11:24 am
Nina Alka - Allie you always manage to say things in your writing that I’m carrying in my heart. Reading this today was no different. It brought tears and smiles to say “been there, felt that”! Enjoy your writing so very much. Your writing reads so real and true.October 8, 2014 – 11:43 am
Katia - What an honest and raw post, Allie. I was so moved reading it, I almost wish I had waited until after my lunch break at work… I do strongly believe that life presents us with learning opportunities and makes us confront those precise things that scare us most. Our biggest hang ups. I think you and I have even had that conversation before. Thank you for opening up about your gorgeous boy and the arduous road to accepting realities you can’t change. I loved reading about your aha moment. There’s so much to learn from that. I shall definitely be rereading this post. Lots of love, KatiaOctober 8, 2014 – 12:28 pm
Kristi Campbell - Oh Katia, you are so awesome and yeah, I agree about life presenting us with so many opportunities for confronting that which most scares us – well said, friend. Well said.October 9, 2014 – 11:25 am
Allie @ The Latchkey Mom - Thank you for your very kind words Katia. I truly appreciate them.October 13, 2014 – 6:59 am
Christine Carter - Oh what a poignant and powerful piece about motherhood at its deepest level… about struggling to grow a part of ourselves that denies the inevitable. About courage and understanding and above all- taking those faithful steps into the scary unknown, in order to not only give our children the best they deserve, but open our hearts to all who deserve the best.October 8, 2014 – 1:21 pm
Caroline Cutter - Love your writing Allie and I hope you had a great birthday yesterday 🙂 I always remember the day Barrett came trick or treating to our house and grabbed Shaun and gave him a bear hug – Shaun didn’t recognize him in costume and wasn’t sure what to do so he just stood there. Barrett then just left go and went on with the adventure too cute!! I hope you are all well and understand your crazy days – we are trying to figure out Sophia who is a little puzzle both for us and the school system 🙂 We are beginning our journey with special ed like you did long ago – good luck 🙂
October 8, 2014 – 1:38 pm
Dana - So honest, Allie – thank you for sharing your journey with us. When you wrote of your three kids cheering Barrett on and being jealous of the short bus, it made me think of all of the kids I know whose siblings have special needs. They are some of the most amazing kids I know, full of respect, compassion, and acceptance for everyone they meet. I bet your kids are amazing too.October 8, 2014 – 2:27 pm
Kristi Campbell - Dana, I agree with your comment about the siblings of kids with special needs being absolutely amazing. I wish Tucker had a twin. Like for real… and I got to meet Allie’s kids (they are awesome).October 9, 2014 – 11:33 am
Allie - Thank you Dana. I do hope that they will continue to be such strong supporters during the pubescent years – you know? I’d hate to see them crumble to peer pressure.October 13, 2014 – 7:01 am
Sarah - I understand this process so well. How beautifully and clearly you have written it.October 8, 2014 – 2:59 pm
Kristi Campbell - Sigh Sarah. I agree that Allie wrote it amazingly well. But am sighing because I know you get it and it’s HARD.October 9, 2014 – 11:33 am
Allie - Thank you Sarah!October 13, 2014 – 7:02 am
Lizzi Rogers - Ahhh it’s difficult to have our preconceptions and prejudices a) exposed and b) challenged so directly, but this was brilliantly written, and a life lesson well learned and VERY well shared 🙂October 8, 2014 – 5:10 pm
Tamara - Ahh! You two have met! Well I’ve met Kristi and Kristi has met Allie.. so.. one day. With photos.
You were such a rockstar yourself for pulling yourself up and introducing yourself to the teacher. I got chills from that story!October 8, 2014 – 5:12 pm
Kristi Campbell - It’s almost like you two have met each other Tamara! And yeah, Allie’s a total rock star for introducing herself to the teacher. Brave and important and plain old awesome.October 9, 2014 – 11:37 am
Allie - Thanks Tamera. I could kick myself for not going to Blog U – I was so close!!!! I would have met so many many blog friends. Next time.October 13, 2014 – 7:04 am
natalie - Fantastic! For several years I worked with special needs kids as a substitute in the school system. So I thought I knew something. I guess not. Your story brings it all closer to home. It’s real. It’s honest. It’s understandable in a way that I couldn’t grasp as a substitute or an aide. Thanks, Allison, for opening my eyes (and I’m sure many other)a little more.October 8, 2014 – 5:45 pm
Kristi Campbell - Natalie, I’m sure that you know a lot more about these incredible kids than you realize and I think it’s wonderful that you worked with special needs kids. I think everybody would benefit from being around them and realizing that they’re just kids with needs and desires and that sometimes, they just need some extra help. Thanks so much for your kind comment.October 9, 2014 – 11:40 am
Yvonne - I love your honesty in this post Allie. I think many people would relate to it, not necessarily about special needs. We all have beliefs and fears that we need to face and you have done that so well.October 8, 2014 – 6:01 pm
Kristi Campbell - I agree Yvonne. People all face fears and beliefs that they overcome and struggle with. Good point. 🙂October 9, 2014 – 11:44 am
Pattie Thomas - Allie,
We are all works in progress but with loving parents like yourself to show the way to understanding and acceptance I think we all stand the chance to better ourselves. Thank you for sharing your world and personal feelings, insights, and knowledge with the rest of us. October 8, 2014 – 7:35 pm
Kenya G. Johnson - I really enjoyed your point of view Allie. Thanks for sharing. Your fears and reservations are very relatable. Real and raw AND humourous – I giggled about the sound effects of the bus coming in the neighborhood.October 8, 2014 – 8:38 pm
Kristi Campbell - Can you just picture the neighbors all nosily peering out their windows to see what the noise was? I could!October 9, 2014 – 11:47 am
Anna Fitfunner - Allie: it’s good to continue this discussion with you about Bear, ASD, and how we respond to special needs kids and adults. I admit that I had a certain amount of discomfort early on in my special needs journey. I got over it pretty quickly, because my son is just so awesome, and fun, and full of life. And HFA. But, and this is something that I’ve posted about on Kristi’s blog before, I’m a firm believer in pushing special needs kids and adults to grow and develop to the limits of their abilities. Once I framed how I related to my son in that way, in terms of helping him and expecting of him to push himself in all kinds of ways, he really isn’t that different from an NT boy. That holds true no matter high or low functioning a special needs child or adult is, and regardless of their disability. It’s awesome that you’re so supportive of Bear as you guide and challenge him to become all that he can and wants to become. I think that he is going to continue to amaze you, in both good and not-so-good (like showing up at the neighbors for story time!) ways. As Kristi says, “Imma sending you hugs!”October 9, 2014 – 12:34 am
Nicki Gilbert - So love and appreciate your honesty, Allie. Smiled when I read about the very loud bus chugging into your cul-de-sac – busted :). And I adore the pic of you and Kristi! Beautiful ladies, beautiful mamas, beautiful post.October 9, 2014 – 4:21 pm
Robbie - I love the honesty in this. At one point in my life I thought I wanted to be special education teacher and I got a job as a para in an elementary school. It was an eye opening experience and though I loved the kids I learned that working with students who are profoundly physically and cognitively challenged was not my calling. I did go on to teach early childhood and had many students with IFSPs/IEPS in my class and I learned so uch.October 9, 2014 – 10:31 pm
Kristi Campbell - Robbie, I love that aspect of this piece as well. I *think* I’m doing and advocating but realize that many of our neighbors (fairly, with reason) don’t even know that Tucker has delays… I mean the short bus came for the past year but well. It wasn’t loud and now he’s on the “regular” bus… sigh. This comment is coming out the wrong way but I know what you mean!October 10, 2014 – 7:25 pm
Tricia - Such a wonderfully told story, so open and honest. Thank you so much for sharing.October 10, 2014 – 7:44 am
Kristi Campbell - Thanks so much for coming, Tricia.October 10, 2014 – 7:25 pm
Out One Ear - Linda Atwell - This is amazing. I’m so glad you wrote about this because I still secretly harbor thoughts such as, Oh, my daughter’s disability could be worse; or, I’m glad my daughter isn’t in a wheelchair; or I’m glad my daughter looked typical as a child. I just didn’t want her to stand out, be any different than she already was. I too remember that first moment when I realized that “these other kids” (one’s that were obviously more disabled than my girl) were actually our tribe. Lindsey had joined the Challenger’s Softball Team. The kids that showed up were very different from my daughter and some ran around in the outfield screeching. At first, I too was uncomfortable. But I must say, Lindsey played for three seasons and by the end, I was a lot more comfortable. Sixteen years or so later, my daughter married one of the guys from the team. So this story touched me. I think you should receive a brave sticker for sharing. Hip-hip hooray. You rock!October 10, 2014 – 5:51 pm
Kristi Campbell - Linda,
I harbor thoughts like that as well. While I’m so very grateful that Tucker’s so social, and mobile, I do see a lot of his differences now that I’m at the “regular” bus stop each morning with so many typical kids. In the special ed environment, it’s so easy to see him as normal or even “doing really well” in comparison. It’s just HARD. I did try fairly hard (I think???) to bond with a mom at preschool whose son had pretty severe needs – I always tried to engage her in conversation, etc, but she never wanted any of it. Maybe it was me. But maybe it was her – just so tired of questions and stares that she couldn’t deal with another potentially curious person? Anyway, that’s a ramble. Thanks though and I agree that Allie gets the brave sticker.
When are you going to write an Our Land for me anyway? 😉October 10, 2014 – 7:30 pm
Marcia @ Menopausal Mother - I think your initial reaction was a common one—don’t beat yourself up about it. Just from reading this post, I can tell you are an awesome mother and that your children are blessed to have you as their mom.October 10, 2014 – 9:38 pm
Bron - Hi there,
I am a long time reader but perhaps my first comment.
Thankyou for sharing this story it was written so openly and honestly.
It’s so interesting as I was having a similar discussion with friends and I always find it educational listening to individuals views in disability/special needs which mainly comes down to first hand experience.
I am on the other side being that I have lots of experience with physical disabilities but behavioural I am still learning.
My son attends a mainstream primary school with a full time integration aide and being there he has taught so many kids and parents life lessons about changing their perceptions of someone who uses a wheelchair, has communication difficulties and needs support to perform simple daily tasks.
I look forward to reading more of your blog.
BronOctober 10, 2014 – 9:39 pm
Allison Carter - Allie- as I said in person, I found this piece incredibly moving and one of my favorite things you’ve written. Thank you for being brave and sharing your story.October 16, 2014 – 8:17 pm
Kellie - This is such a wonderful piece explaining the journey you’ve been on. As a professional working with children with additional needs I’ve often been in the position of breaking the news to parents and being the one to discuss the little bus. You’ve given me a much deeper understanding that I’ll take with me in my work. Thank you.October 17, 2014 – 1:57 pm
A Morning Grouch - Love the REALNESS of this post. No sugar coating. No exaggerated highs and lows. Just this is what it is. (And it sounds pretty damn beautiful, by the way. You’re doing it right).October 28, 2014 – 11:58 pm
Anna - I prefer the term wheelchair user. “Bound” suggests that a wheelchair is a disabling device, which is contradictory to its nature.February 12, 2015 – 10:33 am