Why I Felt Like an Outsider at a School Meeting for My Son With Autism

35
35
4

Yesterday was parent/teacher conference day.

Our son, TJ, is 15 and has autism. We are used to our parent/teacher conference days by now. We’ve already met his teachers at open house, and at a team meeting organized by his special educator before that. 

This is all routine for us and has been for a while. And we’re in such close contact with TJ’s educational team that at these meetings, there are no surprises.

What was new for us last night, however, was the adult services/transitional informational meeting we were invited to, and attended, after our conferences with TJ’s teachers.

TJ is a sophomore in high school, so we were grateful for the opportunity to learn about what possible services and programs could be in TJ’s future.

There were a handful of parents there; in fact, there were more presenters than families. At first, I thought this was great — there must be so many opportunities for kids like TJ upon high school graduation!

Then, one by one, the presenters spoke about the organizations they represent. Every program sounded wonderful — employment and educational opportunities with organizations that think of the whole student (academically, socially and including life skills, too)! How great!

As I sat there and listened, however, I began to feel that slow creep of fear. There is a lot to know about these programs. And this part of his life always felt far away. I don’t know if we’re ready. And a lot of the employment they’re speaking of are jobs in supermarkets, or restaurants, or front desk jobs at gyms… TJ loves animals and really knows so much about them. Where would he fit in? Would he fit in at all? Do we live in a terrible area for him, with no place to fit his interests, and do we have to think about moving?

All of these thoughts came flooding to me at once. And then, like a swift kick to the head, came another thought:

I don’t think TJ will have the typical “apply to college and wait for acceptance letters and celebrate with your family when you make your choice” experience. 

This hurt. A lot. And I don’t even know why.

I learned a long time ago that TJ doesn’t have most of the experiences typical kids have. I’ve mourned these losses and accepted them, and I’ve learned to treasure every success he has had.

I thought I could handle anything. I thought I was prepared for whatever came next.

Turns out I’m not as prepared as I thought.

And then I thought of my friends, waiting in line at the gym (where parent/teacher conferences take place) to talk to their kids’ teachers. 

And I suddenly felt left out, different and alone.

I know, logically, that I’m not alone. Sean, my amazing husband, was sitting right beside me. And if he was feeling any of these same feelings, he wasn’t giving it away at all. 

I also know my experiences at those conferences in the gym are similar to that of my friends’ experiences… right? Aren’t they? Or are there discussions parents of typical kids have that we weren’t having?

And I felt like an outsider in that crowded classroom. All by myself in that busy, bustling building.

Do we get to make college plans like other parents? I know that if we do, it certainly won’t look the same. We will have to work with an outside agency, whose help we need to plan separate living arrangements, and socialization, and learning how to share a kitchen, and learning how to take a bus around town.

And that’s just the tip of the iceberg. 

All this time, I suppose I thought that TJ would go to college, discover his passion and magically translate that into a job. It was always my dream for him. But what if my dream and his dream don’t match? They most likely won’t. He probably won’t want to leave home, much less leave the state, and I dreamed he could go to college anywhere he wanted. 

He probably will always want to stay close to home.

I feel like I’m on the edge of a cliff, looking over and not knowing what comes next.

And I suppose in some way, I am. The future is unknown. The things we have to consider for TJ’s future are much more detailed than that of your typical kid. The planning has a lot of hands involved. There are a lot of new things for me to learn as this next big step approaches.

I’ve felt this way before — just before TJ started kindergarten.

So today, even though it hurts, and I feel like an outsider compared to other parents of sophomores, I know that soon, all those tasks I have to perform for my boy will feel routine. As I learn more and more about our path, and the process we will have to go through, I will feel more secure and less alone.

So forward I go, one foot in front of the other, comforted in the fact that although we are on the edge of some new experiences, we will soon hit our stride, and do just what needs to be done to have TJ just where he needs to be.

Just where he needs to be.

Follow this journey on Laughing…Like It’s My Job.

35
35
4

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

5 Ways to Comfort a Grieving Parent

2k
2k
0

People say there is no greater loss than the loss of a child. You’re not supposed to outlive your children; no mom or dad should have to make their child’s funeral arrangements. Yet, two years ago, I was facing a parent’s worst nightmare. We knew my triplet pregnancy was high-risk, but my husband and I never imagined we could lose them. In a matter of two months time, we watched two of our triplets pass away in our arms. First, our precious daughter, Abigail, followed by our son, Parker, 55 days later.

In the days and weeks that followed, life was a blur. We were grieving over the loss of our two children, while trying to stay strong for our surviving triplet, Peyton. What do you say to someone who just went through the worst moments in their life? It’s a question I get asked often. There are no words that can bring back our children. And sometimes comments meant to comfort us do more harm than good. But there are several things that helped my family cope after our losses, especially in those early days. Here are five ways to comfort a grieving parent:

1. A simple hug speaks volumes.

Don’t feel like you have say anything to try and take away the pain. Oftentimes, a hug goes a long way. And don’t be alarmed if I won’t let go for what feels like an eternity. Sometimes being that literal shoulder to cry on is what us grieving parents need most.

stacey.4-001

2. Let them know you are there for them.

Shortly after our first child died, I shut myself off from the world. I was still in shock and didn’t want to talk to anyone. Yet, my voicemail filled up with messages from my friends and family just letting me know they were there for me. Emails and Facebook messages piled up, and texts were coming through my phone daily. No one expected me to pick up the phone; they knew I would reach out when I was ready. Don’t be afraid to reach out more than once. Knowing I had a support system when I was ready helped me more than I ever imagined. And for those wondering what to send a grieving parent, incorporate the child’s name. Some of my favorite jewelry were personalized gifts. Two years later, I still wear the names of my triplets around my neck with pride.

3. Offer to help in some way.

When my pregnancy went south and my health began to unravel, we didn’t have family to turn to. Everyone lived thousands of miles away from Illinois, yet people near and far offered to help us in so many ways. Those in town dropped by meals so we didn’t have to cook. Out-of-town friends sent gifts cards for take-out meals. One friend even hired a cleaning lady to help us while our daughter was still in the NICU. But help doesn’t have to cost a dime. Simply offering to do laundry or run an errand can be an enormous weight off their shoulders.

stacey.2-002

4. Don’t be afraid to talk about their child.

I remember talking to friends for the first time after my children passed and many didn’t know what to say. They asked about my health and how my surviving triplet was doing, but they didn’t know how to bring up Parker and Abby. I don’t blame them — there is no easy transition when the topic is child loss. Once friends realized I enjoyed talking about all three of my children, it got easier. They began to ask about my short time with Abby and what Parker’s personality was like…and I loved every moment of those conversations. For grieving parents, hearing our angel’s name reminds us that they exist. Even though I had less than two months with my son, I could spend days talking about him. Don’t be afraid to talk to us about our children. Even if it leads to watery eyes, I guarantee I’ll have a huge smile through those tears.

5. Remember the important dates.

As time passes, life goes on. But for grieving parents, it can feel like life is at a standstill. We never “get over” the loss of a child. Instead, we learn to live with it every single day and learn how to move forward with our new normal. Some days are more difficult than others: holidays, anniversaries and major dates when we learned devastating news. Words can’t express how much it means to me when I get messages on those dates from friends who remembered, especially as the years go by. A simple card on my son’s angelversary fills my heart with love. Those little things might not seem like much, but to grieving parents, it can help get them through the toughest days.

This post originally appeared on Perfectly Peyton.

2k
2k
0
TOPICS
,
JOIN THE CONVERSATION

Dad Starts Each Day Drawing Comic of Daughter With Down Syndrome

13k
13k
0

Jessica Wills may have Down syndrome, but she’s still “just Jessica.”

The 15-year-old from Stratford, Connecticut, is the inspiration behind her father’s ongoing comic, called “Just Jessica.”

unnamed-4

Fred Wills, a registered nurse, would draw little cartoons for all of his five children, but for Jessica, his youngest, he tries to do it every day. He draws Jessica’s daily lessons and adventures for material, using an app to help create the images below.

“Jessica’s big thing was that she wanted to be just Jessica… We used to talk a lot about her special needs and she would say, ‘I am just like everybody else,'” Wills told The Mighty. “Everybody just wants to be treated like everyone else. That’s the message behind ‘Just Jessica.'”

12003025_1052728138084874_1511598248959859942_n

Screen Shot 2015-10-12 at 12.09.32 PM

Each night he creates a new one, and in the morning he posts them to the “Just Jessica” Facebook page before printing one and taping it to the microwave for Jessica to find before breakfast.

11214060_1050537698303918_823692256759186823_n

12011202_1050004298357258_4155182771125614138_n

The subject matter ranges from school work and sports to conversations Jessica has had with her mother and father. The comic always features the family’s sassy cats, Megatron and Fox.

“The themes are all about being independent and growing up dealing with special needs,” Wills told The Mighty. “We focus on Down syndrome because that’s what we know best, but the challenges apply to all special needs.”

12032120_1055660784458276_1982920581918179552_n

unnamed-2
Jessica with her father, Fred Wills

“I like it when my father thinks of me,” Jessica told The Mighty, before asking if there was a way for the band One Direction to see her cartoon.

“That’d be fun for them to see it. I like Harry Styles a lot,” she explained. “I like his crazy hair.”

11998959_1044939582197063_6146687607546816168_n

“In so many ways Jessica thinks, feels and acts like a regular, old fashioned, teenager,” Wills told The Mighty in an email. “The arguments, fears, loves and pains, the acting up and acting out, the body changes, the anxiety, the humor, the full gambit of emotions and trials we all go through are hers. Through it all, she dances gracefully along the thin line of ‘special needs’ and what many refer to as ‘normal’… More than anything we hope that ‘Just Jessica’ will make you laugh and feel good like when you get a hug.”

Visit the “Just Jessica” Facebook page to see more of the daily cartoons.

13k
13k
0
TOPICS
,
JOIN THE CONVERSATION

In 5 Words, My Son With Autism Reminded Me I’m Doing Enough

694
694
2

As a single parent of an autistic child, I am constantly hearing, “I don’t know how you do it.” Honestly, it’s just what I know. In the beginning, I’d see other families at the state autism center, occupational therapy and the special needs preschool and be in awe of both parents. I envied them since one parent had the other to lean on. I wanted to tell them how lucky they were to have each other. It’s not always easy to be thrown additional challenges on top of raising a child with disabilities when you’re a single parent. A year ago on diagnosis day, all I wanted was another person to be there and tell me everything was going to be OK.

Caitlin Johnson.2-001

Here I am a year later, and I still question whether or not I’m doing everything I possibly can for my child. I can’t take him to every single appointment that’s recommended since I’m a single parent. I need to work and put food on the table. I structured my work hours to specifically allow time for his therapies. It’s difficult but worth it in the end. There have been times I have taken my son out to restaurants, shopping or to the movies with hesitation, wondering if he’ll have another meltdown. There have been bloody noses, scratches and broken items as a result. I’ve heard other people whisper, “Do you see that kid freaking out over there?” or “Wow, how spoiled is he?” I have never once wondered if I could handle all of this. It’s just something that I’ve come to know.

As a single parents, I sometimes ask myself if I’m doing everything I can to fill the gap. Am I being the best possible parent I can be? I feel that question has been answered by my amazing 4-year-old son, Sage, himself. He could not stop talking about the movie, “Hotel Transylvania 2.” So finally (with a lot of verbal prompting), we set out for a visit to the local theater. Sage was overwhelmingly excited when we got there. He ran through the hall and had trouble choosing concessions. We found our aisle seats and proceeded to get ready for the movie to start. After the movie began, I found myself running around the aisle, making sure I didn’t lose my son. He was playing hide-and-seek behind our seats, and I could overhear the people behind us getting frustrated as he crawled underneath their seats. Finally, once the movie started to pick up the plot, Sage found his seat and watched the movie.

The smile on his face was the most beautiful thing I had seen in a long time. He crawled over his seat and found his way into my lap where he finished the movie. Walking out of the movie theater as I held his hand, he leaned into me and said, “Mama, you my best friend.” My eyes filled with tears as I told him that he was mine, too. I smiled at him with tears in my eyes as he looked at me. I don’t think he realized how good it was to hear those five little words. Five simple little words that remind me why we do it all despite the challenges. The five little words that reaffirm a single parent’s work doesn’t go unnoticed. The five little words that touched my heart.

694
694
2
TOPICS
JOIN THE CONVERSATION

When the Doctor Gave My Unborn Baby a Diagnosis I Couldn’t Believe

1k
1k
8

What does that mean?

That was my response to the doctor who just delivered some of the most confusing, unexpected news I have ever received on July 6, 2015.

“Your baby tested positive for trisomy 21, which means you have a 99.9 percent chance of having a baby with Down syndrome.”

Surely this cannot be true. What are you talking about? This would never happen to me.

“We can discuss your options.” Options? I have options? Then do whatever you have to do to make this not true. I want that option.

I stumbled out of the doctor’s office that day knowing my world had been changed forever.

I told my husband that night about the news I received, and together the shock rocked our souls. We laid in bed that night staring at the ceiling, holding hands, sometimes crying, sometimes talking but definitely not sleeping. We just wanted out of this nightmare and for the sun to come up with this all gone.

He went to work the next day. I don’t know how. I headed to a friend’s house and paced around her kitchen without stopping. I was rocking in the fetal position standing up for the entire day. I didn’t know what I was going to do, but I was not going to do this. I was not going to be a mom to a child with Down syndrome. I couldn’t. My life was perfect and this child was going to be imperfect. I envisioned myself hostage to this child and that my life was over. I can’t do this, I can’t do this! That’s all I knew and felt right then.

Trauma. That’s what we were experiencing. An emergency visit to our counselor and pastoral friend confirmed that. I don’t think of trauma like this, but he was right. That first 24 hours was complete mental chaos; we were traumatized by this news. Looking back I cannot believe how much I lost control of my emotions and mental stability in those first days after hearing the news.

As the days went by, the reality sunk in and the emotions settled down. As the diagnosis was confirmed, the research began. I realized how uneducated I was on the subject and how much there was out there to learn. A lot of times the Internet can be a bad place to search for answers, but in this case, the Internet was such a blessing to my new reality. I learned the stories of so many other mothers who received the news as I did or found out their news in the hours after their baby’s birth. They felt the same fear and frustration and confusion I did. But they all, every last one of them, said that they wish they could’ve seen into the future and known then what they know now. It’s going to be OK. More than OK.

It’s going to be OK, it’s going to be OK. That’s what they all say. That’s what I keep telling myself. Sometimes I believe it, but most of the time I’m still convincing myself this is what’s true.

Three months later, I don’t believe anymore that I’m going to be held hostage by this child or that my life is over. I’m also fully aware that my life is far from perfect and that every child is imperfect. But I’m scared and restless as I wait for the unknown. I definitely don’t feel prepared or qualified to be the mom of a child with special needs.

But what I do know is that I’m going to love this child with every ounce of my being. And I’m going to hug him and kiss him every chance I get. And I’m going to help him pursue his dreams and watch him go places and experience things just like I’ll do for my other children. I’m going to encourage him and give him any wisdom I can. And most importantly I’m going to teach him that God loves him. I will be the best mom I know how to be.

But most of all, I’m going to be brave. I’m going to be brave for him. I’m going to be brave for him because he needs me to be brave for him. All our kids need their moms to be brave for them so they can be brave in this ugly and scary world.

My son, Cody, is going to make his celebrated arrival soon, and all I know is I’m ready to be his brave mama.

Follow this journey on Growing With Cody.

1k
1k
8
TOPICS
JOIN THE CONVERSATION

To the Parent at School Who Doesn’t Understand My Child’s Autism

775
775
2

Starting the new school year has been tricky for my son, C, and me. The move to a bigger class, a new classroom and a new teacher has been hard. It’s hard to let him go, knowing I’m not there to protect him from everything. I worry so much about him being judged by others. How much do people really understand? Do his classmates get cross at him because he can’t sit still? Do they get annoyed that he has zero volume control? And my worst fear — is he getting left on his own at playtime because no one want to play with a little boy who can be so demanding and bossy? Do the children all go home and complain about him to their parents? If they do, I hope they try to explain why he does these things and that he doesn’t mean to. But do they actually understand themselves? Are they in a place to explain?

All parents of autistic children want understanding and acceptance, but for this to happen, we need others to know about autism first. I’ve never told anyone at school that C is autistic, and the school can’t say anything. So how can I expect them not to think C is just naughty?

I wrote a letter to all the parents at C’s school to help them understand autism spectrum disorder and hopefully put them in a better position to explain it to their children. Whether I ever have the courage to send it is another matter, but here it is…

Dear parent,

My name is Lottie and I am the proud mommy of two little mini-beasts, C and G. I wanted to write a short letter to everyone in the school to explain a little about autism because C is autistic. Some of you many already know lots and others may know very little. Before I go on, please don’t think I’m being patronizing or condescending to any one of you. Autism is a hidden disability you’ve probably heard about, but you might not have direct experience with it.

Every parent wants their child to be accepted by their classmates. They want their child to enjoy school, make friends and be happy. One of my biggest fears is that C ends up hating school. Some children who are autistic end up getting homeschooled because they can’t cope with the school environment. I think this is sad because school can be a super place, but I can also see how it happens. Autistic children might get bullied at school more because other children don’t understand why they behave how they do. That’s why I’m writing this letter — so you have the knowledge needed to understand.

Children who are autistic want to join in, they want to play, they want to learn. But they just need a little more help and support. Many autistic children have sensory issues, which means they can seem rough during play or pushy in the lunch line. Big spaces, loud noises and bright lights affect them, and if they don’t have volume control, they might shout. They can have high anxiety levels and need to be in control, which could come across as bossy and demanding. Change can be extremely hard. They often need a fixed routine and a lot of warning before something happens. Transitioning between one activity to another can be tricky.

When children get overloaded, they often have meltdowns. These can seem like tantrums from the outside, but they’re anything but. It’s when they’ve become so overloaded by what’s going on around them that they can’t cope anymore. As a parent I find these extremely hard because they’re uncontrollable and can result in me being hit, kicked, screamed at and anything in range thrown at me. Never mind the fact that if they happen out in public, I’m judged and thought of as a bad parent.

C is just like any other 5-year-old. He wants his friends around to play, and he wants to go to other people’s houses and play. He wants to go to the park; he wants to go to birthday parties. But these simple activities can have a massive impact on him and us as a family. For example, going to a birthday party can take a whole week of preparation. He needs to know who will be there, where it will be and what will happen. And then once we arrive, it can take him ages to find the courage to walk in. The noise can be overwhelming. The excitement can be uncontrollable. He can manage about an hour before he stops listening to me, starts running around at 100 miles per hour, goes bright red and starts to sweat. These are signs of overload and a meltdown brewing. Because he’s only 5, he’s still too young to fully read the signs himself, so as a parent, I need to do this for him. I also need to help him learn how to manage himself. When it is time to leave? When it is time to go and quite literally sit in a dark room?

He’s already beginning to feel these signs, but he’s still too young to get it, so he doesn’t react in the safest possible way. A lot of autistic children are runners, and when they also have no sense of danger, it can be a stressful mix. When things are too much, quite often he just takes off. This is why if we’re talking on the playground and it seems like I’m only half listening, it’s because I’m watching the classroom door. If I don’t grab C as he comes out of the classroom, he’ll be off. Most of the time he’ll go back to the car and get in it, but if he’s already zoned out, he’ll just run straight past. Cars and roads won’t stop him!

So please don’t think C is bad, naughty or rude. I don’t want you to think I’m asking people to invite C over to play, or that I expect him to be invited to every party. I’d love to have his friends over to play and give him birthday parties but right now, I’m honestly not sure he or I could handle it. He’s doing really well at school, and that has a lot to do with the super staff and lovely children. I’m not after sympathy for either him or me — only understanding.

Thank you for taking the time to read this.

From,

A proud but worried mother

Follow this journey on Family Life and Autism.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

775
775
2
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.