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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When My Son With Autism Told Me He No Longer Wants to Be a Dad When He Grows Up

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Our eldest son on the autism spectrum used to say when he grew up he’d like to be a dad — possibly combined with a part-time job as a either a dentist or super villain.

Relationships hang around in the back of your mind when you have an autistic child. Will they, won’t they? Every person with autism is different, and what they want out of their life and how they interact with people and the world is different too.

The thoughts about our son being in a romantic relationship, becoming a dad and the difficulties he may face with this came to my mind again when a few days ago he declared he didn’t want to be a dad anymore. I wondered why. Why doesn’t he want to a dad anymore?

“What if (the child) makes me angry?”

“And I’m not good at homework and I have to be able to help them… What if I can’t?”

What more can I say? My son continues to astound me. He’s only 8 years old, and he deals with ADHDanxiety and a few other bits and pieces. He knows this. Sometimes he’s happy with it, sometimes it frustrates him and sometimes he shows an extraordinary amount of empathy and care that melts my heart or brings a tear to my eyes. He has many qualities I think would be great in a father.

But son, with this single comment, you proved you couldn’t be a better dad. Here is the truth:

Every parent gets angry at some point.

Every parent wonders if they are good enough.

And this is when we are old enough to be parents. At 8 years old, you have years to work on these. But more than that, your doubts make me think you would be a fantastic father.  Your sister may walk around with a doll, but that doesn’t mean she’d make a better parent. What you are concerned about could not make you more parent-like.

My son may have struggles ahead with his own feelings, his friendships, his affections. As his parents, we will be here to help him through these times. We hope to help him achieve whatever it is he really wants to do. As always, I’m ever so proud of you, son.

Follow this journey at www.rainbowsaretoobeautiful.com.

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To My Roller Derby Teammates Who May Not Realize I Have Autism

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woman with roller derby gear on Dear roller derby team, 

Joining the team has been one of the most difficult things I’ve done in my life. It has been physically, emotionally, and mentally exhausting. Yes, yes, derby is that way for a lot of people, what’s the big deal? Well, it’s even more so for me. You see, I’m on the autism spectrum.

Basically, my brain works differently from yours. I can be socially awkward, I can experience sensory overload, and my gross motor skills are lacking at best. The lights buzzing, the sounds of the skates on the track, mixed with the feeling of my mouth guard and other gear can be overwhelming at times. Throw in trying to skate and hit each other on top of it all. Yikes! It’s like a bomb went off in my head that screams “danger!” But I’m out there trying my best.  

I don’t usually make it widely known that I have autism. There is unfortunately a stigma that comes with it. People usually say something like, “You don’t look autistic” or “You are just quirky.” I’m not sure what they think a person with autism looks like… and “quirky” can be just a nice way of saying “weird.” Some days I can function pretty normally, and some days going to the grocery store is like walking onto a battlefield. That being said, I have told a few ladies on the team about my autism for the simple reason that in playing a full contact sport, I might have a sensory meltdown and I don’t want people freaking out.  

I say all this because I want to say… thank you! Tonight’s practice was difficult for me. I was in pain and experiencing sensory overload. I was on the verge of a meltdown when one of you lovely ladies patted me on the back and told me I was doing a good job. It was a little thing, but it was enough to snap me out of my funk. Thank you! Thank you to the people who knew about my diagnosis and have always treated me like everyone else. It means so much to me to be accepted. Thank you to the coach who has told me dozens of time to hold my head up and get into my derby stance, without losing patience with me. I hear you, and I’ll get it one of these days. Thank you to the people who barely acknowledge my existence. I know you are in the zone. Your dedication and focus are something I aspire to have. Thank you to the people who see I’m not understanding something so you break it down in a way that I get. Your willingness to work with me is something I haven’t often experienced. 

Roller derby people are some of the kindest, most generous and toughest people I have ever met. Thank you for all you do!

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5 Ways to Be a Supportive Sibling to Someone On the Autism Spectrum

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I come from a very close-knit family. My parents have been married for over 30 years, and I have two wonderful brothers. Fifteen years ago, when my youngest brother Joe was just 7 years old, we found out he has Asperger’s syndrome. At the time, there was not much research about it; my family treated Joe like everyone else.

Eileen and her brother Joe.
Eileen and her brother Joe.

Being an older sister has its perks, but when you are dealing with someone on the autism spectrum, there are things to consider.

1. Be careful how you tease. If you are an older sibling, you will inevitably find ways to torment your younger brothers and sisters. But, if one of them happens to have Asperger’s, they may not get over the torments so easily, and likely will not understand sarcasm.

2. Realize you may never win a debate. My brother is very headstrong and insists that Donovan McNabb should have never left the Philadelphia Eagles. He has statistics to prove it. I do not. I can just argue. He can back up his arguments about everything from sports to politicians with facts and figures.

3. Accept your sibling’s daily habits, even though you may not fully understand them. Joey likes to heat his ice cream for 30 seconds before he eats it. Who knows why; I can ask him why until he is completely annoyed with me. I have learned these habits will not change.

4. Sometimes you may not hear the words “I love you.” People on the autism spectrum may express feelings differently. Once in awhile, I will get a small nudge or pat on my back. I know he loves me; he will just show it differently than my other sibling.

5. Be their best friend. Growing up, it may take some time for your sibling to make friends. As you are busy making plans or bonding with family, make an effort to include your sibling. You may be their best friend, and you can help give them the confidence they need to succeed.

I am proud to say that Joey was his high school prom king. In college, he worked as a sideline reporter and sports announcer for several La Salle sports teams. He was a lead anchor for the school’s sports show, which aired on cable each week. He networked with some of Philadelphia’s finest sport anchors and reporters. He has friends and is one of the most personable, talkative people I know. I see him not just as a brother, but as an inspiration. The least I can do for him is to be an understanding older sister.

This story originally appeared on KenCrest.

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