What a Letter My Mom Wrote About Raising Me as a Child With Autism Means to Me

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When I turned 24, it really didn’t mean much to me besides knowing that in a year I could rent a car for the very first time. Two weeks later, I received an email from a parent in regards to helping her grandson who has Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS).

Maybe more than any of the other emails I had received before, this note was very detailed, asking several questions about topics such as early diagnosis, therapies, early childhood, how to approach the diagnosis, etc.

Kerry Magro with his mother, then and now

Even though I’ve helped answer questions before, I asked my mom to help assist me in answering this woman’s questions. What I received back from my mom made me realize it had been 20 years since I was first diagnosed at age 4. 

Twenty years of autism. 

It made me realize how much time had flown by and how I got to where I am today. I thought about the milestones I’ve hit: playing for my high school basketball team, being student council president, having a girlfriend, graduating college, becoming a motivational speaker, writing a book and, maybe most importantly, having a voice to be heard. Time slowed down for a bit.

This is what my mom wrote to the woman who was seeking advice about her grandson with PDD-NOS:

“Looking at Kerry today, I wish someone had offered me the inspiration and hope that he represents 20 years ago. And I can see why anyone would ask him how he got to where he is today. His PDD-NOS was severe. Although we didn’t know what PDD-NOS was at the time, they mentioned that some children were institutionalized, and that’s all I heard.

Kerry was our delightful only child who reached most development milestones like height and weight (except speech) until he was 2 and half years old. At 2 and half, he started to show extreme signs of sensory integration dysfunction, where he was afraid of a wide variety of sensory issues. Wind, rain, water, noises loud and soft were major issues.

There was a time when we couldn’t bathe him. Uneven surfaces such as sand or swings where he couldn’t feel the bottom below him were a problem. He was asked to leave two different preschools because they couldn’t handle him. He preferred isolation and wouldn’t play or participate with other children. He had delayed speech, limited pretend play, twirling and extreme difficulty with transitions and tantrums. He also had fine and gross motor delays. 

When I dropped him off at school in the morning, he would scream that he didn’t want to go in, and when I picked him up in the afternoon, I would have to drag him screaming because he didn’t want to leave. Once at home with a caregiver, he would scream at the top of the stairs, “Go away!”

Kerry was diagnosed first by Hackensack Hospital and then by Dr. Margaret Hertzig, the director of pediatric psychiatry at Cornell. Dr. Hertzig is a world-renowned expert in autistic and autism spectrum disorders. She watched him as he grew, marking improvement she observed. 

The Kerry you see today is not the Kerry I grew up with. We began occupational therapy (OT) at home with a pediatric therapist. OT continued at home until he was 7 as well as in school where he was in a multi-handicapped class. At 7, he began intensive physical and OT therapy at Hackensack Hospital where he did a lot of vestibular planning issues. He is seen privately to this day for OT/PT as needed by a local physical therapist.

One of the major things that worked for us was sports. Although he didn’t want to be around people, I got him involved in pee-wee bowling and then sent him to a JCC summer camp for children with neurological issues. The camp was wonderful in that they did a different activity every 40 minutes, and the forced transitions helped condition him a lot. The vestibular planning therapy also helped a lot.

Kerry started to respond to recognition, praise and rewards, and I ran with that. We have a million “great job” stickers, magnets and trophies. I also developed my own token economy barter system with him. If he would try something three times, he would get a predetermined prize (seeing a movie, an action figure, a game) that we agreed on. If after the third time he didn’t want to do something, I would agree to let him drop it. When he wanted to do nothing three times, it sometimes seemed interminable for both of us, but I kept at it and found a kid who loves bowling, soccer and basketball. T-ball was rougher with the coordination issues and was one that got dropped but not until the third season.

All this time, speech, physical and occupational therapies continued. He also took lessons piano at the house to help him out.”

To have this letter written out for me to read left me with so many emotions. Some of these things happened so long ago, I had no recollection of them whatsoever. What stayed with me, though, was the passion and love that came with this letter. No matter how many challenges were presented, my parents were always willing to go the extra step to help me, and today I want to live by that example to help others.

My parents are strong. They are saints. Without them, I have no idea where I would have been five years down the line let alone 20. I know I still have a long way to go, but one thing I know is for the next 20 years that I have autism, I’m not going to be sitting down. I’m going to fight, I’m going to serve, I’m going to commit, I’m going to conquer and I’m going to communicate for the better day for us now and for the future.

I wrote this blog post several years ago, but the lessons I’ve learned from my parents still rings true today. To all the parents out there, remember you are your child’s greatest advocate.

This post first appeared on KerryMagro.com.

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I'm Proud to Be Autistic

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​I’m Hayley. I’m 22 and autistic.

One thing that annoys me is when people assume if they know one person with autism, they know a lot about autism. If you know someone with autism, that’s great. But no two people with autism are the same; we all have different abilities, skills and personality traits.

I’ve had people say, “I know someone with autism and they don’t act like you.” Exactly, because we are two different people.

I try telling people that, but they don’t always understand.

From a young age, I knew I was different. I wasn’t keeping up with others with schoolwork, my spelling was horrible and understanding everyday things was hard. I started getting bullied in fourth grade, and from fifth grade until I left school in 10th grade, my life was hell. I was bullied pretty much every day, and I would bottle up my feelings for months until I would release them all at once.

I believed people who said they were my friends, and I gave them my lunch money, let them stay at my house, gave them rides and would go hungry to help them. But when I was bullied, they would turn and bully me as well. Then they’d tell me they were sorry, and I would believe them and forgive them time after time.

I didn’t understand my autism fully until I got to high school, and by then I hated it. I wished I was never born with it. I would wonder, why me? I just wanted to be “normal” and accepted.

My mother and I agreed that at the end of 10th grade, I would not be going to school anymore. I started working at McDonald’s and left school.

I had teachers tell me all the time I would never achieve anything with my life because of my disability. I used to believe them, but slowly, with the help of my family I started not hating my autism and myself. As time went by, I realized I actually wouldn’t want it any other way. I’m proud to be autistic. Yes, I have trouble understanding emotions and sarcasm and how others are feeling, but I’m OK with that.

I am Hayley, and I’m autistic and proud.

Having autism hasn’t wrecked my life. In fact, it’s made it better. It’s made me see how much of a individual I am.

I have achieved many things, including:

  • I got my license
  • I’m a lifestyle support worker
  • I share a rental
  • I have my own car
  • I found I have a passion for makeup and cosplay and photography
  • I pay my own bills, including car payments, electricity and more
  • And as of the end of last year, I started writing my own book about autism and have become a guest speaker about autism.

Don’t talk to me like I’m 2 when you find out I’m autistic. Don’t tell me how sorry you feel for me and how “brave” I am. And how I’m too “pretty” to be autistic.

People ask me why I tell people I’m autistic. It’s so they can understand me more, like why I might not look them in the face while they talk to me or while I talk to them. Why I can’t stay still. Why I cant understand sarcasm or jokes. Why I might not know what emotions they are feeling or showing. Why my anxiety is acting up or why I’m having a breakdown or meltdown.

So if you know someone with autism, please remember we are as human as you are. We have feelings, needs and dreams.

Don’t tell us what we can and can’t do, because we will prove to you we can do anything we set our minds to. And remember, no two of us are the same.

In June, I spoke at my first workshop in front of lots of people. In July, I passed a course on ADHD and autism with flying colors. I’m always studying and researching autism.

My story is ever changing, and I like that. It shows me how far I’ve come.

Follow this journey on Through My Eyes.

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8 Ways to Create Ease About the New School Year for a Child With Autism

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I still vividly recall the anxiety I felt years ago when the new school year was fast approaching for my three sons, one of whom has autism. Getting three children ready for school could create a lot anxiety, but many years have passed, and they’re now all adults.

Life has changed a lot since then. But some things may never change for a child with autism who may feel anxiety and uncertainty about a new school year. 

Through trial and error and life experience, I discovered simple ways that eased my autistic son’s adaptation to change. I practiced these throughout the years and still implement these as a mom and a teacher. I offer no guarantees, only that these ideas may ease your child’s willingness and adaptation on the first day of school and beyond. They’re worth trying. 

1. Create ease and predictability.

Begin to ease your child’s fear by taking your child on a field trip to school about one or two weeks before the first day. Introduce your child to her teacher and other school staff. Take photos of everything: the school lunch room, the hallways, locker, the classroom, the bathrooms, the cafeteria, including the lunch line, and tables. This will enhance your child’s familiarity and predictability within the school setting.

If your child resists going to the school for a visit, break it down even more. Drive by the school and take a picture. Try again another day by walking into the school. Oftentimes, the drive by the school is the best first introduction.

2. Offer your child an activity.

At home, arrange the school field trip photos into a scrapbook or on a large poster. Review with ease all the photos with your child.

3. Write a self emotional awareness (SEA) story. 

Write a story with your child about the school visit or imagine the first day of school. Start with lower emotions, such as doubt and worry, and work up to higher emotions, such as ease and enjoyment. Imagine the best and write about general things and emotions that may happen on the first day of school.

I offer this example:

“Once upon a time, Sarah was afraid to go to the new school. Every day she worried about the new school. One day, her mother said, “Sarah let’s visit your new school.” Sarah finds safety with Millie, her favorite dinosaur toy so she brought Millie with her. Sarah and Millie, both met her new teacher, Ms. Jordan. Ms. Jordan had a friendly smile and walked Sarah to a table where there was a puzzle with bright colors.

After saying goodbye to Ms. Jordan, Mom walked Sarah to the cafeteria and showed her where she will eat lunch with her class. Mom took lots of pictures. Because Sarah had many pictures to look at, she began to feel at ease. Because she held her new backpack and was able to gently touch her new uniforms, she and Millie began to accept them as new school belongings. Until finally, Sarah felt better about going to school.” 

Now you try writing a SEA Story with your child.

4. Create ease for your child by communicating with their teacher. 

Ask your child’s teacher to provide you the planned structure of the day and week. Provide that structure of activities in the form of a daily checklist or weekly calendar, so your child can experience ease in knowing what the day may bring. 

Talk with your child’s teacher about what your child’s likes and their strengths. 

If your child has limited expressive and receptive communication, provide the teacher with a list of their gestures or signing and the intention your child is communicating. Use a system of reliable tools to assist with communication like pictures, etc.

Also include the signs that show your child getting anxious. Offer the teacher a list of strategies that may bring ease to your child. Have the same list taped to the front of their notebook or backpack.

For example, prevent a meltdown by addressing anxiety. Offer the child a brief escape, quiet corner or area where they can cope and regroup. Perhaps offer headphone of relaxing music or a YouTube video to view calm nature scenes with animals. Or suggest assigning a peer student to sit with them to draw or color.

5. Create safety and predictability at home. 

Spend extra time with your child one to two weeks prior to the first day of school. Play at the kitchen table, draw, paint, play with modeling clay, while talking about school. Perhaps put on calming music to promote a positive atmosphere. 

Make cookies, lemonade and healthy fruit smoothies for enjoyment.  

Establish a bedtime ritual or routine. Watch a video or read a short story about forest animals or other interests your child may have. 

Establish a morning routine in getting dressed and eating breakfast in a quiet and calm home setting. Many children enjoy a visual image checklist to mark off tasks as they move through their morning.

6. Create predictability and positive expectations after the school day. 

Your child may look forward to activities that bring ease and rest, such as watching their favorite TV show or movie while eating snacks. 

Build upon positive emotions within home activities before school begins. Surround your child with a general ease and a pace that matches their preferences. Also draw upon physical activities such as walking in a park or riding a bike, since these can wash away stressful emotions. 

Read the SEA story you wrote and set it to pictures so your child will see school through a positive lens. 

7. Let your child feel your love. 

Most importantly, remind your children that they are good. Tell them they are loved and hug them many times a day. Tell them how well they are doing and how proud you are that they are doing their best. 

8. Lastly, remember to care for yourself. 

When you do your best to help your child adapt to the new school year, you’re their best advocate. Plan some individual time for yourself, so you can find general ease through this process. It’s important to care for yourself, so don’t deny yourself the nourishment, rest and activities you need and enjoy. Caring for yourself is the best care you can provide to your child during the transition to a new school year. 

These eight ideas are timeless and can be adapted and applied to a child, adolescent or young adult with autism. 

Lead photo source: Thinkstock Images

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The Most Difficult Part of Receiving Therapy as Someone on the Autism Spectrum

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“Your son will receive physical, occupational and speech therapy as part of his early intervention plan.”

This was one of the first things my parents ever heard from a therapist. From as young an age as I could remember, I received some form of therapy. This was due to my earliest challenges with autism. Along with being nonverbal until I was 2.5 years old (I started speaking at age 3), I dealt with a speech delay, motor challenges, dysgraphia (a handwriting disorder), auditory processing disorder, severe sensory integration dysfunction, and expressive and receptive language disorder.

I still remember going to Hackensack Medical Hospital and playing with Play-Doh, to help strengthen my hands, and walking on balance beams to help my coordination. Those were my favorite things to do in therapy; I couldn’t list all the other activities would do because this article would be 10,000 words long  by the time I was done.

If you were to ask me today, looking back, what the most difficult part of receiving therapy as someone on the autism spectrum was, I would tell you it was not seeing progress at the end of each day.

When I was younger, I didn’t feel like I saw any progress at all in my therapy. From the very beginning, I came in with the mindset that I wanted to succeed right away. Although the therapists wrote in their reports to my parents that I was making small improvements, all I saw initially was a struggle. This triggered emotional issues for me, as I was trying to communicate my basic needs to my loved ones.

There was not a lot of hope back then, from my perspective, but what my parents and therapists did for me is something for which I can never thank them enough for: believing in me. Their positive reinforcement and ability to see the bigger picture made me start to see it in myself. While the time it took to see the therapies’ effect on me was definitely my most difficult challenge, I can say today that it was all worth it. As the years went by, I had to go to less and less therapy sessions until the time I graduated from high school, by which time it had practically stopped.

For parents, the advice I give when I talk to parent groups and schools is to research, research, research! Find the therapy that works best for your child! My advice for kids out there with autism who are having difficulties with their therapies is to understand that it’s not a race, but a marathon. Think with the end in mind, and imagine the rewards you will receive by sticking with it. I know it may be challenging to see now, but one day it will all come full circle, like it has for me. Never stop striving!

A version of this post originally appeared on Kerrymagro.com.

Image via Thinkstock Images

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The 5 Worst (and 5 Best) Things Special Educators Have Said About My Son With Autism

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My youngest son has autism. He’s doing well, but that doesn’t mean it’s an easy road. Especially with school. He’s had a team of teachers, specialists and other educators each year to help him him grow and learn. And I’m so grateful for all these special education team members. They have made a huge impact in our lives.

However, there have been a few times when their words have been less than helpful. Sometimes a downright punch in the gut, riling up the mama bear in me. It’s surprising what has been said in the course of my son’s education journey. Here are the five worst things I’ve heard from special educators, in no particular order.

1. “We can’t accommodate those requests.”

During my son’s first grade year, he had quite a bumpy road and some pretty tough behaviors. After an extensive meeting with a roomful of various educators on his team, we decided on some action items to get him back on track. I recapped the meeting for all parties involved so we were on the same page. I reiterated my son would start to receive a daily schedule and I would receive a daily behavior sheet so I could help figure out why he was getting upset and reinforce things at home.

When I sent the email, I received the reply “We can’t accommodate those requests.” What? This was a critical piece in solving the puzzle of what was going wrong for my son in school. And we all agreed upon it during the meeting. A schedule is basic Autism 101, so it was not an outrageous request. You can bet I marched in to the principal’s office and the next day we had a schedule and a daily communication sheet.

2. “For the dignity of the child, we don’t want him crying in the halls.”

At that time, crying was my son’s way of expressing his extreme discomfort, overwhelm and frustration with his situation. His teachers should have been focusing on why he was crying instead of shaming him and moving him out of sight so other kids wouldn’t stare. I felt like the “dignity of the child” was more about shaming than problem solving.

3. “Our special friends.”

We had one special educator in particular, a director in fact, refer to all the students in the autism program as “our special friends.” It was quite condescending. Why are they not simply students? Why are they “special?” Aren’t all students special? Why single them out? Every time she used the term, it would grind on me. She would say it in front of the students too. It would confuse the heck out of my son as he had very specific rules of what constituted a friend, and she wasn’t it! To him, friends play together and are of similar age and like similar things. She was an adult and a teacher and clearly not in the friend category. He wanted nothing to do with friendships as they were exhausting socially to him. So he flat out told her she wasn’t his friend!

4. “Congratulations, your son qualifies for services.”

We heard this when our son was first evaluated for autism. We didn’t understand what an autism diagnosis meant, and weren’t ready to face it. We were confused and didn’t know what to do. So to hear our suspicions of autism confirmed for the first time was not a reason to celebrate. We realize now that he needed help and we are grateful he did qualify for services. It just wasn’t a “congratulations” situation at that time.

5. “Have you considered medication?”

Asking if my child is currently on medication is of course a necessity in his education plan. However, implying he should be medicated is not an educator’s place. Ever.

It’s not my nature to complain only about the negative experiences we’ve had. I truly am extremely grateful for the myriad of therapists, teachers and specialists who have helped my son on his journey. We couldn’t do it without these amazing people. And we’ve encountered some seriously amazing people too! So here are the 5 best things I’ve heard from special educators.

1. “Let’s try it.”

My son was in a therapy center full time when he was 5, and he was having a bit of a hard time in the group he was in. I felt he was bored with his current level and ready to move on to the next level. But he was having behaviors that his current therapist felt he needed to overcome before moving on. The next level lead therapist thought otherwise, and suspected the same thing I did – he was bored and ready for the next challenge. So she said, “Let’s try it for a week.” And he did remarkably well! So we moved him up. It wasn’t without bumps and new challenges, but he definitely was ready for the next level.

2. “I’d like to recommend him to represent our class on the Student Council.”

I was floored when my son’s 4th grade autism teacher suggested this. It wasn’t even something I thought was possible. But she believed he could handle the responsibility and it would be good for him. She was so right. Not only did it give him practice talking in front of the class, he began to feel a sense of pride and belonging — something that had never happened before.

3. “He has such a big heart.”

A teacher I didn’t know very well said this, and told me a story of how my son consoled her when she was having a rough day. For him to go out of his way and give her a hug really touched her. It didn’t surprise me he did this, but I was so happy that others see what a compassionate person he is. Any time a teacher tells you something good about your child’s character, it’s a great feeling!

4. “He’s ready to graduate.”

We heard this from our therapy center when he completed the transition program with his peers and was ready for mainstream school the next year. I will never forget how immensely proud I was of him in his little cap and gown, and when he got up on the stage to give a sweet speech thanking his teachers. He was only 6! I can’t wait to see him again in a cap and gown when he’s 18 and graduating from high school. I’ll be even prouder and cry harder, I’m sure.

5. “We don’t have any more goals for him for speech and OT.”

His teachers were sort of apologetic and hesitant to suggest that my son no longer needed these services during his IEP meeting. But we were thrilled that he’s doing so well and no longer needs this level of support. As long as it’s truly because he’s at an appropriate level and that he can get those services again if needed, it’s OK to drop those services. I can see why this would be a hesitant statement if they worried that we believed he still needs the services, but he doesn’t. Moving on from needing support is a reason to celebrate!

The difference between these two lists is clear. The second list focuses on my son’s capabilities. Each of these educators believed in my son as much as his dad and I do. And that goes a long, long way on this special education journey. It’s not always an easy road, but with empathy, compassion and a belief in capabilities, special educators can make a huge impact with their words.

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The Pressures of Being an Autistic 18-Year-Old

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I don’t do well without structure. It’s a simple fact. Any sort of change thrown my way, even a simple addition to a night out, leaves me with my brain awry, my stomach in knots and my anxiety bursting at the seams.

So why would I ever choose to move out of my house into a dorm, go completely independent and work a full-time job in the span of two days?

Was it teenage impulsivity? A little bit. Was it a desire to experience something new? Maybe. Was it the need to have some sort of income? Well, I can tell you that definitely played a role. While these were all factors, I believe the most obvious reason boils down to this: societal and familial pressure.

The truth is, I am 18 years old. My extended family doesn’t know I’m autistic, and I often don’t share that fact with others. Before, I was able to blend into the neurotypical world with small-talk scripts I’d learned, but as I’ve gotten older, the interactions with my peers sail me into uncharted seas, and I often find myself capsized. The conversations that were once simple arithmetic have turned into calculus, and I was never very good at math anyway.

As my peers grow among one another, I find myself stumbling behind them, desperate to catch up. Some of my extended family members don’t understand why I’m not on par with other family members in my age group. To them, I am simply a “late bloomer,” or even worse, “lazy.”

So I found myself in a situation a lot of autistic people find themselves in. I’m at an age where I’m “supposed to” make drastic changes to my life. I am supposed to move out, go to college, live independently, find a job, and expand my view of the world. I am supposed to hit a growth spurt in personal development while simultaneously adjusting to the adult world. So when I received the offer to move away from home, live in a dorm, be completely independent and work a full-time job, I jumped in. I thought that maybe if I did this, my family would see me in a different way. I could stride forward and give them something to be proud about. Maybe by throwing myself into the waters of the real world for six weeks, I could see if I sank or swam.

Well, impulsive actions are never wise. I thought I could keep my head above water, but I can feel myself slipping under. There are no familiar routines, no therapy animals, no schedules. I am living in a strange room, in a strange building, with people I have no idea how to interact with. I have never made such a terrible decision in my life, and now I’m stuck here, alone, without any sort of grounding. I am forced to try something new every day, miles away from my comfort zone, desperate for any sort of structure.

There are often articles about letting a child try something new when they say they are ready for it. These articles tell you to allow them to succeed and fail on their own, without interference. But sometimes, you need to evaluate the situation. Is your child doing this because they feel pressured? Is this a serious change that needs careful attention? And most importantly, is my child trying something new just to please others?

It is a delicate balance — maintaining a healthy amount of freedom and restraint. Most of the time, kids and young adults have no idea what the hell they’re getting into. I certainly don’t conceptualize consequences until they are happening. My advice is, don’t let your kid make sudden decisions without talking to them about how it will affect them. I understood that this transition would be hard, but I was so focused on the idea of seeming accomplished by my family that I didn’t fully understand what it entailed.

Make sure to evaluate needs, understand your child won’t change overnight, and give your thought-out opinion before your child decides. That is something I could have certainly used.

Image via Thinkstock Images

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