I Was Meant to Be an Autism Mom

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As my 5-year-old son and I walked out of gymnastics last night where he takes a private half-hour class, it was cold, damp and a bit windy in the looming dusk. Freezing, I excitedly said, “Let’s run to the car, Leo!” and took off gripping his hand tightly. Beside me, I heard this stilted little voice say, “Let’s run… fast.” “Fast.” I glanced down in surprise to see a slight smile gracing Leo’s lips as his messy mop of wavy hair was blown back to reveal his pretty features. So we ran fast to the car, holding hands, laughing all the way.

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I’ll cherish that moment because while it’s a simple story to share, the significance of hearing Leo respond to me, showing he comprehended what I asked and then following through with the suggestion is certainly wonderful. That he added the word “fast” (twice!) is huge in the communication department.

It’s moments like that where I’m reminded I was meant for this hectic, sometimes overwhelming but highly rewarding life. I was meant to be an autism mom. You may be shocked to hear that, but I actually revel in it these days. Autism doesn’t frighten me anymore. Autism doesn’t make me sad. I’m done grieving. In all honesty, when you stop and think about it, autism is pretty darn fascinating. Of course, there are hard and frustrating moments, but the joyous moments are greater. There are still meltdowns, but happy and content are more the norm. I’ve gotten used to their exuberant noises and embrace it. Silence is overrated anyway. Meeting milestones is cause for celebration, and delays make us work all harder. We’ve become a well-oiled team in our house, and there’s not a lot of guess work anymore with what works and what doesn’t.

It wasn’t always like that for me. When my now 18-year-old twin boys were diagnosed all those years ago, I was devastated, angry… and a bit bitter. I didn’t want to be an autism mom. That was not what I signed up to deal with at all. I wanted someone or something to blame for stealing my boys’ smiles, speech and outgoing personalities. But after getting over the initial blow, I jumped in with both feet, determined we were going to help them achieve their highest potential. Of course, back then the only things I knew about autism was from a few internet searches and from the movie “Rain Man,” and that was definitely not a good model of autism to predict the future capabilities of either boy.

I’ve earned many titles over the years; I took on many roles for my kids. I became a strong advocate, a novice therapist, learning tricks of the trades of speech, occupational, developmental and physical therapies. I became a feeding specialist, a nurse, a negotiator, an arbitrator, a teacher and a protector from the bullies. I learned to juggle our time and coordinate a crazy busy schedule packed with developmental preschools, regular schools and therapies. My kids work challenging full-time jobs, learning how to talk, socialize, process and regulate their senses and coexist in an oftentimes confusing world. With the help of resource and special education teachers, we became proficient in balancing academics, homework loads and down time as the twins moved through each grade at school.

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I’d say I’m kinda like a wedding planner, coordinating and assisting all aspects of a big grand ceremony.

I also fostered interests, collections and obsessions because whatever brought them joy brought me joy. I’ve bought books, boardgames, fidget toys, Thomas the Tank Engine stuff, iPads, Barney galore, coins, puzzles, computer and video games, Hot Wheels and hoards of stuffed animals including a big, quite real looking hairy tarantula puppet that actually gives me chills (ick).

I’m sure I made some mistakes over the years and possibly missed or ignored some ground breaking therapies to try, but as I look at my sons, I’m in awe. To have come so far from their premature birth, major developmental delays and autism diagnoses to graduating from high school this June and heading to college in the fall, I know we did something right. My husband and I are so proud of their hard earned accomplishments. We rocked their autism as a team, and I believe they’ll continue to blow statistics out of the water with their successes as time goes by.

We’re also forging forward with a new version of autism or as we call it “autism enhanced with Down syndrome” with our daughter, Lily. While suspicious she had autistic traits (Down syndrome and autism can both have sensory processing and communication issues), we didn’t push for a formal dual diagnosis until recently. She’s 11, and we’re using our autism knowledge to tweak her therapies and her needs because I’ve noticed with her dual diagnosis that Down syndrome is currently taking a back seat to the autism. I’m grateful for my experience with the twins because that experience has guided me in supporting Lily more effectively as well as helped us in understanding some of her behaviors better. Since she’s not able to communicate well or learn in the same way as the twins, it’s nice to have that prior knowledge as we map out a plan to meet her highest needs right now so she too can achieve her level of success. We’re simply gonna dazzle her dual diagnoses with everything we’ve got in our autism toolbox.

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Finally, we’re getting a fourth chance to rock autism all over again with Leo, our youngest. In some ways he’s similar to his older brothers, but in other ways he’s completely different, so comparing isn’t always an option or a wise thing to do. There’s also newer therapies and different techniques to try. Treatments and therapies are always changing or evolving, similar to the way individuals with autism change and evolve, but for us the stakes are the same. We’re going to help Leo achieve his greatest potential, whatever that may be and enjoy watching him bloom.

Bottom line: I love being an autism mom, and frankly, I know I’m good at it.

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This post originally appeared on Our Version of Normal.

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The Phone Call That Forever Changed My Role as a Therapist

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I will never forget the boss I had at my first pediatric job. I had a lot of respect for her because she had such a unique perspective on therapy.  Not only was she an OT, the owner of the clinic, but she was the parent of a child with special needs. I would watch the connection she was able to form with the parents, even if she had only known them for a few minutes.

I used to think to myself, man, I wish I had that level of understanding without having to go through it all as a parent. A couple years later, I attended an NDT baby course taught by a phenomenal pediatric therapist (PT). The course in it of itself was a paradigm shift in thinking as a PT, but it was the last afternoon of the course that really separated the course from others.

She took her microphone off, turned the PowerPoint off, and sat on the table in front of us all. She proceeded to tell us that this is the part of the course where she is no longer the PT teaching but the parent of a child with special needs sharing life with us… wow.  Once again, I walked away with that same thought: what an amazing point of view to have as a therapist. One that I wish I could have without having to go through as a parent.

Fast forward 11 months to February 2010. My wife, Sharon, was calling me at work and I happen to be in between patients. I vividly remember answering the call and not being able to understand a word Sharon was saying. Once I was able to calm her, I heard, “The doctor’s office called and there are some things they are concerned with on the ultrasound. They said she has an extra finger, her stomach is distended and that her nuchal thickness is excessive. They want us to go see a perinatologist.”

Sharon was 20 weeks pregnant, and two days prior, we had just found out that we would be having a second daughter, Elle. This was the day our lives would be turned completely upside down.

The following week we had our first appointment with the perinatologist, where she confirmed the original findings and suggested we do an amniocentesis for further testing. A week later, we sat in a cold examination room as the physician showed us our daughter’s karyotype, which revealed a very large extra piece of chromosome.

She said that with the size of the extra piece and the amount of genetic material that existed within it, we needed to understand that our daughter would be significantly physically and cognitively impaired. She followed this by saying that, more than likely, she would be incompatible with life.

We were then asked a question that I thought I would never have to face in my life. She said because of what we just talked about, it would be completely understandable if we chose to terminate this pregnancy and that she would make that referral for us. I will never forget looking to my right, seeing Sharon sitting on the exam table with her face in her hands, sobbing. I looked back up and told the physician, “We believe that we do not have the authority to make that decision.” In that moment, we made a decision to support each other and love each other no matter what and that, as Elle’s parents, we would never stop fighting for her, her sister and our marriage.

The following day, we had an appointment with Sharon’s OB/GYN. She reported that she had talked with the specialist and repeated what we had heard the day before. She then asked the same question, for which we answered the same way. In the most compassionate way one can say, she said, “Then we will continue on with this pregnancy the way we would with any other, but I need you all to know that if she doesn’t make it to term and passes away before being born, it will no longer be considered a miscarriage and so I strongly recommend you make funeral arrangements now, so that you won’t have to later.” That’s the day my heart hit rock bottom.

As a pediatric therapist, your imagination can take over and you start piecing together impairments from every kid you’ve ever seen. As you treat the kids, you wonder, will she have this or be like this? The other thing that happens is you start to look at the parents differently. You start to realize that “high-maintenance” mom is just a mom who is vigilant about her child’s care and that there are so many things that are happening behind closed doors that impact her response.

We were in the middle of this emotional roller coaster of still trying to find a diagnosis for Elle. It took two genetic tests and about four weeks to finally get an answer: an inverted duplication of chromosome 13, or Tetrasomy 13. Now that we had a name, we could get a more accurate prognosis. Well, so much for that. The literature review of documented cases showed that they were all over the place. So much for providing some direction.

One day during all of this, I was doing an evaluation on a little baby at work. The mom was still in the process of genetic testing to try and find a diagnosis for her baby and as I was taking the history, two words came out of my mouth that caused me to pause for a second: “I understand.” It was in that moment that one aspect of the journey hit me: I do understand.

I proceeded to share with the mom what Sharon and I were in the middle of going through. I told her that she was the first parent to whom I have ever muttered those two words.

You see, I was starting my transformation, a transformation that was molding me into that person, that therapist who could form a connection with other parents only after knowing them for a few minutes. That therapist who can take off the microphone, turn off the PowerPoint, sit down and have a candid conversation with other therapists – not as a therapist but as… a special needs parent. I am a special needs parent.

The Mighty is asking the following: What’s a moment that changed the way you thought about a disability 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.

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This New Pen Could Help People With Parkinson’s Write More Legibly

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People who have Parkinson’s disease sometimes experience micrographia, a symptom where handwriting starts out OK but becomes increasingly small and difficult to read. It can make everyday tasks like signing a card or writing a grocery list incredibly difficult. Parkinson’s can also make small, narrow writing tools, like a pen, painful to hold.

With these difficulties in mind, the British design group Dopa Solution developed the ARC pen, a pen designed specifically for people with Parkinson’s who experience micrographia, Wired News reported. The pen, which is larger and easier to hold than an average pen, vibrates at a high frequency that helps users write clearer and larger. In a trial of 14 people who have micrographia, 86 percent of the participants’ writing was bigger when using the pen, according to the video below.

The ARC pen is still in the early stages of development — Dopa Solution is currently looking for sponsors to progress testing and development to the next level.

“As our theory of using vibration works for other tools, it could be [used in] makeup tools, brushes, computer mice and other tools,” Lucy Jung, one of the product designers, told Wired.

Hear more about the ARC pen from people who have used it in the video below.

h/t Reddit Uplifting News

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What I Wish I Could Tell Everyone Who Asks, ‘What Functioning Level Is He At?’

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It’s no secret that Brian is an Internet fan.

He can Google-search with the best of them. He can hack people’s passwords. It’s a big joke (but not a joke, because it’s true) in his classroom that teachers cannot enter their passwords in front of him because he will quickly memorize them and add apps on to his teacher’s iPads. He can run up big tabs on my Kindle if left unmonitored.

My favorite thing that he does though is dub one of his favorite 64 Zoo Lane episodes with the audio from Sesame Street: Kids Favorite Songs 2 (another favorite).

It’s amazing to watch him. I’m truly in awe. He has it timed just right so that the zoo animals are crashing when the Sesame Street video has a dramatic clip about the meatball falling off the pile of spaghetti. He times it so the zoo animals are eating watermelon at the same time Snuffy finally gets to eat the meatball he’s been chasing.

And my favorite is when he loops the same three seconds of the zoo animals cheering to when all the Sesame Street characters sing “Elmo’s Song.” The 64 Zoo Lane animals truly look like they’re singing “Elmo’s Song.”  So much so, that the first time I saw him do it I didn’t realize he had two YouTube videos going on simultaneously.

Things like this just blow me away. It doesn’t matter how many times he does it, I drop everything I’m doing to watch him. He’s a mastermind.

Often, people who don’t know much about autism and are just meeting myself and Brian ask me innocently what functioning level Brian is at. It’s such a difficult thing to answer.

The standardized evaluations tell us Brian has “moderate-to-severe” autism. Brian is still working on 1st grade sight words in school. He needs help with self-care skills that most kids mastered about four years ago. Expressive language, and sometimes receptive language, are extremely tricky for him.

But he can work any electronic you give him, dub videos with precision, give you directions to places he’s only been once, sing songs after just hearing them a time or two, and memorize motivating words (like “Ratatouille,” “Dreamworks,” “Curious George,” and so on) and spell them.

He is utterly amazing and he really can’t be put into a box of functioning levels, much like all of the spectrum kids that I’ve ever had the pleasure of getting to know. It’s truly a disservice to my child to try to put him in a box and leave him there. No matter how many things will continue to be difficult for him, there will always be other things that he will excel at.

This post originally appeared on The A-Word.

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A Letter to My Juvenile Arthritis

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Dear Arthritis,

You’ve taken so much from me. School, work, friends, hobbies. Every day I wake up in pain, and every night I go to sleep in pain (if I do get to sleep). You’re constantly trying so hard to make my body fail, to make my life so hard, to make me give up. But you know what? I won’t. I won’t lose this war. Maybe I’ll never win it either; maybe this fight will last my whole life, but I will never give up. There will be days when I feel like you’re beating me, but I will always come back. I will always continue fighting.

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This game is unfair. It’s like a soccer match without rules, breaks or an end. You’re the referee, the manager and the opposing team. It’s up to you when you’ll hit the ball, when you’ll try to score a goal. Sometimes you succeed; you’ve scored some goals during these years. But so has my team. The cortisone injections are like giving one of your players a dismissal; the pain killers are a free kick to me. Some of the other meds make your forwards play worse, some take players off the field. The happiness, hope, laughing and faith make the ground tilt a little so the ball rolls away from my goal. Together, doctors, nurses, physiotherapists, occupational therapists, researchers, friends, family and I do everything to help my body score goals.

In the last months, we haven’t done great; your team has been stronger than mine, but don’t get too happy about that. We will find a way to improve, and I will always continue fighting.

You don’t make it easy, and I might not win, but I will make the best of the time I’ve got.

I won’t give up.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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.

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The Small Behavior Shift That Helped Me Bond with My Brother

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My twin brother, Daniel, was diagnosed with autism spectrum disorder at the age of 2 years old. Autism is a disorder that affects brain functioning and communication. There are many types of autism; some cases are extremely severe, and others are mild, or anywhere in between. Daniel’s autism was very severe when he was younger, but he’s progressed through age, therapy, and school. He can now talk, sing, dance… you name it!

What has always been incredibly fascinating to me is that Daniel actually starting tackling his milestones regularly as a baby (even before me in some aspects, such as walking). A little down the road, though, probably when he was about 2 years old, my parents started noticing that something was astray about Daniel because he began just staring ahead or facing a wall if anyone tried speaking to him.

He also stopped responding to his name, so my parents were starting to think that he was hearing-impaired. He started watching the television with the captions on and would draw any logos that he saw perfectly. My family didn’t really know what autism was back then. My father had just seen a movie called Rain Man about a week prior to Daniel’s diagnosis, which portrays the life of a man living with autism. When the doctors confirmed the autism diagnosis, my parents felt confused, devastated, and hopeless. My father then remarked, “So this is, like, that Rain Man movie I saw about a week ago, right?”

My mother, on the other hand, just wanted to get books, join support groups, and become educated all about autism so that she could find out how to help my brother. One doctor even told my mother that Daniel would never be able to speak or show affection towards others; he would not have the capabilities to form relationships or say “I love you” to his family. This hit my family like a ton of bricks and it hurt.

Having a sibling with special needs has definitely been so busy, difficult, wonderful, hectic, and fulfilling all at the same time. I must say, as children, he got on my very last nerve. Growing up, I always just kind of knew that he was different. He couldn’t talk until around age 7, so whenever I tried to speak to him or show him something that I thought was cool, he wouldn’t answer back. He didn’t like to share his toys or the remote and he was always throwing tantrums. When he did this in public, it embarrassed me very much.

At times, I felt like I missed out on certain things, like seeing friends. My parents didn’t really trust babysitters alone with Daniel because people didn’t understand his disability like I did as his twin sister or like our other brother did (we have another brother named Scott who is older). It was also difficult having friends over because they couldn’t comprehend why Daniel behaved the way he did.

As I got older and started to try and understand why he did the things he did (probably around middle school), our relationship got a lot easier to handle. From there, I realized as his speech got better that he only liked to talk about the things that he was interested in. I really wanted to have a strong relationship with him, so I went out of my way to observe him and find out what he liked so that I could talk about it with him.

Since then, we’ve gotten so much closer. I still use that tactic with him to this day. During that time of observing him so much, I also realized that I wanted to have a career in some type of work where I got to interact with children just like him. He helped me realize my destiny and path, and I couldn’t be more thankful for that.

Now that Daniel and I are both adults, we enjoy each other’s company a lot more than we did when we were children. In my eyes, he has grown into such a unique and well-rounded individual. I moved away for college to a town that is about seven hours away from home, and Daniel appears to have been largely affected by this change. When I visit home, he is glued to my side and when we’re not together, he sends me many text messages throughout the day.

His speech is now exceptional and he’s working very diligently with maintaining eye contact with others and holding a conversation. He currently has a job coach that is trying to help him find employment opportunities. He practices mock job interviews with my parents and the coach. I’m constantly worrying about his future, though. I want him to be able to be productive and obtain independence while still being safe out there.

Last year, I became his legal back-up guardian, in the event of something happening to our parents. This was a huge step in both of our lives. This responsibility is an honor and I would have claimed it in a heartbeat, of course (which I did). However, the thought of handling all of his legal matters and basically having his life in my hands is something that I never thought  I’d have to deal with. It’s definitely a whole different perspective now, as adults.

All of Daniel’s little quirks, habits, and interests that once bothered me so much now have me absolutely adoring him to the moon and back. He enjoys playing on the playground, watching cartoons, swimming, drawing, playing on his iPad, and going on car rides with me. As I previously mentioned, he also loves to send me text messages every single day to chat (since he still feels most comfortable typing behind a screen, rather than verbal communication a lot of the time). We communicate through FaceTime occasionally, though, and that is always fun for us.

If he’s mad at me, he doesn’t tell me; he draws a picture of me and what I did to make him angry! He is an incredible artist and uses his work to express himself. Our relationship is so strong these days and it’s only getting stronger. He’s extremely funny; we have inside jokes together and faces that we make to each other.

The most rewarding part is that he always tells me that he loves me now.

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. 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.

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