little girl being ostracized and bullied by her peers

To the Parent of the Kid Who Thinks My Kid Is 'Weird'

35k
35k
6

I am not just a mom… I’m a police officer, detective, analyzer, mind reader, bodyguard and more. I worry every second about the unwritten rules of social interaction because my daughter on the autism spectrum does not understand them. She’s very genuine, has no filter and now can speak from her heart (she couldn’t five years ago). In a different world, her expectations of life, her reactions to the simple beauty of the universe would be so welcomed. Not in our world.

Today at the pool in the apartment complex, I try to get her to understand she was not invited to a nearby birthday party. I use strong loving words. She says, “OK, Mommy” but still she wants to go explain to the kids why she was not invited. I divert her attention to something else and prepare myself for the possibility of a meltdown.

This time, no meltdown, no extra energy spent. Relief. She is finally in the pool, and she wants to interact with the kids. She asks all of them, “Can I play with you?” They all say no. She yells, “Mom, they don’t want to play with me.”

I say (with a broken heart, like a broken record), “Honey, it happens, and you just have to keep trying.”

Out of desperation, wanting to get someone’s attention, she tells one of the boys, “I want to marry you!” She’s 8 going on 15 at this moment.

The boy runs and says, “This girl is crazy!”

She’s relentless and runs after him reminding him what she’s just proposed. She looks at me with the slyest smile — I understand, she’s targeting him to have fun and to remind him girls rule. And to remind me her label, diagnosis, challenges will not stop her relentless spirit and desire to be one of the kids. I am so proud.

So, dear parent of a kid without a label, talk to your kid, answer their questions, eliminate the existing fear of the unknown. More than anything, let them know my kid is not “weird,” my kid is not “crazy” and my kid is not “a pain.” My kid is just a kid, like yours.

Image via Thinkstock.

35k
35k
6

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

6 Back-to-School Tips for Parents of Children on the Autism Spectrum

51
51
2

Although my daughter on the spectrum graduated from college two years ago, I remember holding my breath at the beginning of each school year wondering if Samantha would adapt to new schools, teachers and classmates. Often the school year felt like a roller coaster, so I’m hoping that what I learned from my experiences with Samantha will help parents and their kids on the autism spectrum enjoy a smoother ride.

1. Clothing: if your child on the spectrum doesn’t wear a uniform to school, he or she can transition into the classroom by wearing summer shorts and t-shirts. That’s one less change in routine and one less disruption. Stock up on fall and winter clothes in advance of the season, as soon as they are available in stores. As always, you want to avoid mobs and rushing. If your child is having a bad day, you don’t want to feel pressured to shop. If you’re shopping far enough in advance, you’ll have the luxury of choosing a better day. If your child wears a uniform to school, getting dressed on weekdays will be simpler, but you will still need to buy weekend clothes.

Laying out a clean uniform or a choice of outfit the night before saves time and reduces stress in the morning. Ask for your child’s input. Take this opportunity to develop the life skill of choosing appropriate attire for the weather and occasion. Is it going to rain? Put out galoshes and raincoats. Will it be chilly in the morning, waiting for the bus? Leave out a sweater or light jacket. Dialogue with your child about these choices and why they make sense.

When your children on the spectrum are young, it’s important to make it easy for them to dress independently. I recommend sneakers with Velcro instead of laces, zippers over buttons, and soft stretchy fabrics that slip on and off easily. You may need to remove all tags and labels to accommodate sensory issues. My daughter ripped out scratchy labels, often tearing her clothes unless I snipped them out first. Finally, try to find some fun in clothing selection. Let your child wear their favorite color and develop their own sense of style.

2. Bedtime: If possible, establish a routine for school nights. For years, my daughter listened to the same Linda Ronstadt tape before falling asleep. Your child may prefer to read a story, watch TV or play video games in order to relax before bed. The goal is to ensure that your child gets enough sleep so he or she can function at their best. (Mom and Dad also need time to unwind.) Establish a reasonable bedtime for school days, weekends and vacations, and help your child stick to it.

3. Lunch: Make sure your child has healthy, well-balanced choices in their lunch box. My daughter insisted on a green apple every single day. Why not? I always gave her one, along with her sandwich and juice box. It’s important to honor your child’s taste preferences and sensitivities. Some kids need each food item to be carefully separated; others avoid certain textures or colors. Food fights aren’t worth it. Pack a lunch your child will eat.

4. Time Management: Help your child figure out how much time he or she needs to get ready for school. For younger children, you set the alarm, lay out the clothes, and serve breakfast. As your child gets older, he or she can begin to take over these responsibilities. Your mission is to gradually make yourself obsolete. Will your 8-year-old reliably brush his or her teeth without a reminder? Is your daughter able to comb the knots out of her own hair, or will she walk out the door looking disheveled? At 10, my daughter brushed her teeth, dressed herself without help, poured her own bowl of Cheerios, but brushing her hair properly still required assistance.

5. Mental Preparation: If your child’s previous school year was wonderful, be sure to remind him or her of last year’s success. Will they see a favorite teacher or classmate who’s been away all summer? Does your child love art or music class? If last year was difficult, emphasize all the ways that this year will be better. Cheerlead your child into a better vision. For example, “Now you’re in 8th grade and you get the privilege of leaving school for lunch” (if that is true at your child’s school). Reassure them: “You definitely will not have that same math teacher again.” Ask your child what they’re looking forward to and what they’re anxious about. Above all, reassure them that you are there to help with whatever problems may come up, just like you were last year. You can remind your child about their past accomplishments. “Remember when you thought you’d never ride a bike or learn long division?” And then help them set achievable goals. “I bet you’ll be able to read chapter books this year.”

6. Medical Check-Up: How is your kid’s vision? Weak eyesight interferes with learning at school, but it may not be obvious. My daughter had 20/20 vision, but she also had a condition called exotropia (where her eye drifted out). Exotropia prevented her from seeing the world in three dimensions and turned out to be the main reason she wasn’t making good eye contact. Sometimes a good pair of glasses or the right eye exercises can make all the difference.

Many children with autism have sensory motor issues like dysgraphia. It’s important to address these challenges one by one. Maybe your child will need a keyboard or occupational therapy or both. Set your child up to succeed by anticipating and addressing their issues before they become chronic problems. Finally, make sure your child’s evaluations are up to date so they start school with all their accommodations in place.

Image via Thinkstock Images

51
51
2
TOPICS
, Contributor list
JOIN THE CONVERSATION

The One Thing We Insisted Be Included in IEP Meetings for Our Son With Autism

3k
3k
18

Right after our son’s autism diagnosis, we had our first individualized education program (IEP) meeting.

At the meeting, my son, his dad and I sat around a low table with his teacher, his special education teacher, his IEP case manager and the school principal.

My son entertained himself with rocks and minerals set on the table for the day’s lesson while the adults started to discuss needed accommodations.

The IEP case manager handed us a piece of paper summarizing our son’s “issues” and started to read this list of “problems” out loud.

I was stunned. My son was sitting at the table with us and could hear the manager reading this list of “problems.” Who would be comfortable listening to authority figures recite what was “wrong” with them?

More importantly, there was no list of my son’s strengths to go along with the list of challenges.

This was the real problem.

For every characteristic that can be classified as a “problem,” there’s a flip side — something that actually works as a benefit for my son. It’s part of his strengths.

For example, his sensory sensitivity gives him the benefit of access to a lot of information. When he processes the sensory input, he can analyze what he heard, saw, smelled and felt and can draw some amazing and astute conclusions.

He may have difficulty processing verbal information as a visual thinker, but he remembers what he saw. He can see an extraordinary amount of detail and can draw beautifully.

While my son’s perseveration could be most challenging, it’s also a characteristic that makes him dogged when trying to learn something new he’s interested in.

No child comes into the world with only challenges.

Children with disabilities must learn strategies and methods to use as tools to help them do the things they want to do. These tools must be focused on the child’s strengths and be based on love, creativity and patience.

Failing to use those strengths as the foundation for developing tools — and not even taking those strengths into consideration — is a failure by the adults responsible for supporting the child.

During an IEP, the child’s strengths should be the first thing discussed — challenges second — including an analysis of how each challenge has a “flip side” that works to benefit the child.

At that first IEP meeting, we insisted from that point forward our son’s strengths were to always be prominently listed along with the “problems” the IEP was intended to address, and that his strengths were considered first and used to frame IEP accommodations.

My son later told me that he wasn’t listening to our discussion — he was more focused on the interesting rocks and minerals on the table and didn’t hear the list of “problems.” 

Thank goodness.

Lead photo source: Thinkstock Images

3k
3k
18
JOIN THE CONVERSATION

To Parents Who Are About to Enter Their Child’s IEP Meeting

3k
3k
2

Dear Parent,

I feel for you.

The amount of anxiety and pressures that can often go into an individualized education program (IEP) meeting can seem daunting. You struggle with compiling your child’s records. At times you may just be worried about your child’s school truly not understanding the needs of your child.

For those just starting off in the process, you might be stressed about the initial evaluation process. As your child grows up, you may also have concerns if your school is truly providing transitional services to help them when they age out of supports as adults.

And don’t even get me started about the amount of IEP paperwork that may be flooding your house right now.

Regardless of where you are in this timeline, I want you to know something very important today.

You are your child’s greatest advocate, so when you get into that room, hold your head up high and advocate to the best of your abilities for the programs and services to address your child’s needs.

I recently listened to a keynote presentation from Ryan Blair, a best-selling author who is a single father of a child on the autism spectrum, in which he said, “When you walk into the room of your child’s IEP meeting, you are the boss. Not the principal.”

My parents lived by this quote of “being the boss” ever since they started advocating as part of my IEP when I was diagnosed with autism at 4. This was when I was just starting school, so while I transitioned to school, my parents transitioned to help me find supports. One of those transitions had to do with preparing for IEP meetings.

Years after, I would start sitting in on more of my IEP meetings to figure out more about the supports I needed to succeed. Being able to discuss this with my village made learning easier for me. I now recommend students to consider sitting in on their IEP meetings to learn more about their development.    

Today as a disability advocate, I can say that there are countless resources out there that I’d recommend to you to help you when it comes to IEPs. Goodwin Procter LLP created “Individualized Education Program (IEP): Summary, Process and Practical Tips,” 26-page guide that contains tips on the IEP process. In addition, groups such as Autism Speaks have created a list of resources that can help with your child’s IEP and other school related topics.

Seek out these resources and never stop fighting for your child. The Individuals
with Disabilities Education Act (IDEA)
 serves as a law to protect our loved ones with disabilities. Protect your child by being prepared and ready for that meeting. My parents made a world of difference towards my development today as an adult on the spectrum by advocating for me and my needs in school.

I hope you will be able to do the same for your child.

Your Friend,

Kerry

This post first appeared on KerryMagro.com.

Lead photo source: Thinkstock Images

3k
3k
2
JOIN THE CONVERSATION

How a Communication App Helped My Student With Autism Find His Voice

1k
1k
0

Thomas is 5.

He lives with his family just up the street from me. I get to see him for two hours every weekend when he comes to a children’s class I teach — and occasionally during the week if he stops by my house to say hi.

Thomas has autism and he can’t speak much. His voice rarely tumbles out of his mouth, and when it does, it is generally difficult to understand. In a class full of youngsters, sometimes that means he can be overshadowed by a lively crew of voices all chirping for my attention.

CoughDrop app.
The CoughDrop app.

But Thomas does have a voice — he wants to communicate. While pointing and guessing got us through for a while, relying on gestures was frustrating. Since I work for a company that has created an AAC (Augmentative and Alternative Communication) app, it occurred to me that this could be a big help to the boy in my class who didn’t have a voice. So at the beginning of this year, with his parents’ encouragement, we downloaded the app, CoughDrop, onto an old Android tablet and began using some basic AAC boards in our class. Thomas’ family is just starting to explore speech options for him, and this was an avenue they chose with the help of professionals.

Using AAC in class has been an adjustment for all of us. I needed to adjust my lessons to include opportunities for Thomas (along with the other children) to engage more clearly with the topic. I needed to learn to be patient and allow plenty of time for Thomas to respond. I needed to find ways to model language to help Thomas better understand how to communicate. But Thomas has inspired me, so I worked and planned and together we changed.

To start our class each week, using my own tablet, I pull up a copy of Thomas’ feelings board to tell my clutch of little learners how I am feeling that day. Then, I ask each of them in turn to use my device to tell me how they are feeling. Thomas watches intently as each set of small fingers excitedly navigates the buttons to share their thoughts.

Almost without exception, when it is his turn, Thomas uses his tablet to tell me (with a crooked grin) that he feels silly. He has a deliciously quirky personality and I love getting to know him better. And because we are all using the device to speak, Thomas isn’t left to feel out of place or strange.

A once silent boy has begun to bloom. I have watched as all the research I’ve read has come center stage on the child-sized chairs of my classroom. Once Thomas learned there was a way for the world to hear his voice, he took off. Suddenly he was ten times more vocal than he’d ever been before. I still don’t understand most of his words, but he speaks them regularly and even hums along when we sing. He was immersed in our activities, and there was a light in his eyes that had been missing until now.

With the help of AAC, Thomas answers questions in class, regularly requests a seat on my lap, and asks for his mom at some point almost every week. He often says “hello” to his classmates and occasionally tells them a word or two about his day.

Sometimes he speaks out of turn. Sometimes he shouts words that are off topic. Sometimes he starts up one of our downloaded children’s songs from his speech board when he gets bored (that can’t be right, my class is never boring).

He loves cars. He always prefers to be outside. His favorite means of movement is running!

He is just like every other 5-year-old.

Thomas may have trouble speaking, but thanks to augmentative communication and CoughDrop, I can hear his voice loud and clear.

1k
1k
0
JOIN THE CONVERSATION

Autism, the First Day of Kindergarten, and Crying for the Wrong Reasons

376
376
1

When your child is on the autism spectrum, the journey is full of twists and turns and bumps and many forks in the road demanding a decision you often times second guess. There are no easy answers and a myriad of questions — and no two roads are the same of course. One of the things we faced when my son was 5 was if we should keep him in the current therapy center he was at or begin him in kindergarten (with assistance) at our mainstream school. Of course our hopes were to have him begin school with his peers and neighborhood friends. But he was doing really well at his therapy center and making progress. And the truth was we didn’t feel he wasn’t quite ready for mainstream school yet. We decided it was best for him to stay put, continue his therapy, skip his kindergarten year and start with his class his first grade year. It was a good decision.

But I’ll tell you something that’s not in any of the manuals and resource books about autism — you as the parent may have moments of sadness that sneak up on you. There are sneaky little moments like seeing the kindergarten bus tooling around your neighborhood picking up freckle-faced grins for their first day of school with their teary-eye parents holding cameras and waving. That was my moment. I didn’t get that first-day-of-kindergarten moment with him. As that happy bus drove by my house, I realized I would never have that moment with him. And a well of emotion overtook me. I am not a big crier and yet here I was looking out the window watching the bus pull away and tears were rolling down my cheeks. Why?

I knew it was best for him to be where he was at. The social skills needed and the loose structure of kindergarten may have made him very unhappy. It could set him up to fail, and I didn’t want that. So in no way did I second guess the decision to keep him where he was at. But I was sad.

So why was I crying? Wasn’t my son where he should be? Why was I upset about him not going to a place that wouldn’t suit him well at all.

I suddenly realized this had nothing — Not. One. Thing – to do with my son and everything to do with me.

Me! I wanted that kindergarten moment. I was having a pity party for myself. Being sad about that “picture perfect kindergarten moment” was me grieving the loss of what I thought was supposed to be. But in that moment of realizing this was all about me and my ego-driven ideals, I found a sense of peace.

Yes, my life was different and so much more enriched because of the road I was on with him. I learned to find joy and delight in the smallest of moments. I celebrated little victories. I slowed down. I was intentional. I figured out what was really important. My son wasn’t sad to be missing out on that first day of kindergarten — he was thriving and happy where he was at! And that’s what was important. It wasn’t about me.

Image via Thinkstock.

376
376
1
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.