To the Parents Who’ve Been Told What Their Child With Asperger’s Can’t Do

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Dear parents of a child diagnosed with Asperger syndrome (AS),

Right now it might feel as though your world has just crashed down around you. How could your sweet little child have AS? I want you to take the time to process the diagnosis. Don’t go straight to groups asking questions like, “How did this happen?” because people might be mean and say things like, “How could you not accept your child?” But I know you do. I know you just want the best for them.

Your child is exactly the same person they were before the diagnosis, but I know you think your dreams for them are now out of reach. Take time to grieve the life you thought you would have. I believe you need to do this to accept and embrace the life you have now. It will be different, and you need time to accept that change. I understand that.

Professionals will try to tell you your child can’t do this and can’t do that, but you’re their parents. I believe you know best what your child is capable of, so listen to those instincts. Some people in support groups might also be negative, but just ignore them and soak up everyone else’s positivity. When I was younger, I was told doing residential camps for sailing was a bad idea, and that I would never live independently. Now I sail competitively on a yacht as part of a team, and I live independently in halls at university.

Do your research and listen to what people with AS have to say. There are so many myths out there that will scare you. People say those with AS can’t be in a relationship, that we don’t have empathy, that we can’t succeed in team sports, etc. Well I’ll tell you now, I was in a relationship for a year, and I know many people with AS who are married or in relationships. We do have empathy, and we can sense when something isn’t right — we just struggle to know what to do to make it better. And we can succeed in team sports. I’m about to start playing ice hockey, and for the last few years I’ve been racing yachts. That involves being in close quarters with about six other people for long periods of time.

It will be a hard road ahead of you, I can’t deny that, but it will be a wonderful one, too. You will see your child shine. You will see them break stereotypes and defy the professionals. You have a fight ahead of you for this. You will need to fight for the resources to make sure your child reaches their full potential, but when they do, you’ll realize it was worth it. All the sleepless nights and tears shed will be in the past, and you’ll see just what you were fighting for. They might not have friends right now, but when they find themselves, they will create the strongest of friendships. Lift them up through the bad times, and show them the way to the light.

Make the most of every moment with your child. Before you know it, they’ll be grown up and wanting to be independent.

From,

A successful young woman with AS

The Mighty is asking the following: Write a letter to the parents of a child with your disability, disease or illness. What do you wish they knew? What words of advice would you offer based on your own experiences? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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Have You Seen These Autism PSAs Yet? You Should Take a Look.

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These videos are giving the world a glimpse of life from the perspectives of children with autism.

Autism Speaks, in partnership with the Ad Council and BBDO New York, a volunteer agency, recently launched a new series of public service advertisements (PSAs) that tell the stories of children with autism from their perspectives.

The PSAs were created using 3D and stop-motion animation and are designed to help parents recognize the early signs of autism. The fantastical videos were inspired by the stories of real children with autism, and the one below, the first released from the series, features the voice of Jacob Sanchez, who was diagnosed with autism at age 3.

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3 Simple Reasons Why Trying Therapy Is Worth It

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My therapist looks like Sandra Bullock, except younger, cooler and prettier. She’s a LPC (licensed professional counselor) and we talk about stuff. I also have a psychiatrist that handles the medication side of things.

Although I like to talk about therapy casually, there seems to be this horrible stigma surrounding it. Why? Most of the reasons I’ve heard aren’t worth my time, so here’s a list of reasons why therapy can not only be cool, but actually worth your time if you feel like it’s something you need.

1. You probably see a specialist for everything else — mental health should be no different.

If you have a toothache, you see a dentist. If your vision is blurry, you see the optometrist. If you have a cold, you see your primary doctor. If you’re having mental struggles, why not see a therapist? It’s their job! A mental illness isn’t any “better” or “worse” than a physical one.

When we don’t have the tools to better ourselves by ourselves, it’s OK to admit we need help finding a solution. Therapists and psychiatrists tend to have great toolboxes.

You can’t drive with a flat tire. If you have no way to fix it, how are you supposed to get home?

2. You get to talk about you — and there’s nothing wrong with that.

Being in therapy gives you an opportunity to learn about yourself. In fact, learning more about who I am as a person has been one of my favorite parts of therapy. Being in therapy gives you an opportunity to learn what you like, what you don’t like and more importantly why you feel that way.

Sometimes, we make fast decisions about how we feel about something but then never dig deeper. For example: I hate outside. I don’t like going outside at all and try to avoid it at all costs. When I was reflecting on why, I could trace one of my reasons back to a childhood camping trip. When I moved a layer past that, I could then label the feeling. Now I have a better understanding of why I react the way I do, and I can work on it.

You can learn so many insightful things about yourself in therapy. Although this might freak some people out, don’t be afraid of yourself. Humans are so complex. Understanding our home base (and inner self) is of the utmost importance.

3. Anyone can benefit from it — there are no rules or requirements.

Even if you don’t have depression, anxiety or another mental illness, that doesn’t mean you’re barred from seeing a therapist.

And the best part: They don’t know anyone you know. It’s great!

Depending on what kind of person you are, the opportunity to talk about yourself can be refreshing, whether you’re tired of not being heard or have so many thoughts inside your head you just need to get them out. Getting the opportunity to talk about yourself can relieve some major mental tension.

A problem I frequently grapple with is trying to identify my emotions and reactions. I sometimes second-guess what I’m feeling, unsure if it’s something “everyone else feels” or if I’m overreacting. During therapy, I’ve learned my thoughts and experiences are valid. I’ve also learned sometimes my thoughts are just thoughts, and nothing more than that.

Choosing to go to therapy is extremely courageous. While I don’t believe you should tell someone they should go to therapy — it’s an individual’s decision, and they can go if they want to go — we shouldn’t be discouraging people from seeking therapy either. If you have any inkling or curiosity about therapy, don’t be afraid to try. Then, stick with it. Therapy can honestly change your life for the better. It’s astounding how much progress I’ve made.

Follow this journey on Involuntary Sass

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Deaf Woman Tapes Incredible Experience at Starbucks Drive-Thru

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Starbucks is leading the way in offering adaptive technology to its customers.

In a Facebook video shared on Tuesday, 28-year-old Rebecca King of St. Augustine, Florida, can be seen engaging in video-transmitted sign language at a Starbucks drive-thru. King, who is deaf, orders her coffee using ASL and a barista named Katie Wyble responds.

Screen Shot 2015-11-05 at 10.10.18 AM
Via Rebecca King’s Facebook video.

Wyble is a 22-year-old college student who’s been studying ASL since high school, Action News Jax reported. Wyble says she’s glad the video is gaining a lot of media attention.

“I think more people need to know about what we’re doing because it moves customer service to a whole new level,” Wyble told the outlet. “I hope it helps make more people aware of what they can to do serve others in their communities.”

The store’s assistant manager, Erin Berkner, said in a statement that four of the baristas working at this location know ASL, BuzzFeed reported. The store is near the Florida School for the Deaf and Blind so it has worked to accommodate these customers.

“It is a big deal to (the) deaf community that Starbucks has one now. Nowhere else has that!” King told First Coast News. “We all want to have that at every drive thru in the world.”

Watch the full interaction below: 

 

Starbucks! This is what I'm talking about! ❤️Share it away! We can change the world! :)For Licensing/Usage Please contact licensing@viralhog.com

Posted by Rebecca King on Tuesday, November 3, 2015

The Mighty contact Starbucks for comment and more information on the use of this technology, but are yet to hear back.

h/t HuffPost Good News

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The Sentence I No Longer Want to Hear About My Son With Special Needs

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“He will be just fine.”

“Just work with him; he will be just fine. All babies grow at their own pace.”

“If you really get on your knees and pray, he will be just fine. Jesus can fix him.”

Friends. Family. Let’s be honest. He will not be just fine.

No matter what you say, he will never be just fine. Jesus does not “fix” what is not broken. I believe prayers are answered in His time, not ours.

My son, Noah Gabriel, was diagnosed at 14.3 weeks’ gestation with L1 syndrome (L1CAM syndrome). It includes hydrocephalus but is a whole lot more. On ultrasound everything was perfect except his thumbs.

Doctors did not ask if I wanted to terminate. They did not ask if I knew what continuing meant.

They said, “You have just over a week to terminate your pregnancy in North Carolina.”

Josh and I simultaneously said, “Nahhhh, that’s OK,” in our good ol’ Southern voices. Loud and proud.

So home we went, out into the world to answer the same questions over and over again to each and every family member. I never get tired of talking. But this boy has worn me out since we told everyone we were pregnant. The questions just never stop coming. And neither do the comments.

Family immediately started, “Just pray. I will pray. You hear me? He will be just fine.”

I never thought the words, “He will be just fine,” could be so toxic!

No one had answers to my real questions, and some friends and family didn’t listen to my knowledge. People we knew kept on chanting, “He will be just fine.”

Ultrasound after ultrasound, specialist after specialist. My regular OB appointments were pointless, and I eventually just started telling them whatever they wanted to hear. All the doctors believed, and tried convincing me, my pregnancy was pointless. It was easy to refuse every test generally expected. The tetanus/whooping cough vaccine was not pushed either. I asked for it. I got it.

I could feel my Little Bit every day. He sat low, oh so low. I was huge and pokey. Hydrocephalus would not just let him live in my womb and pass the very second he hit oxygen outside the womb. Right?

Pre-op, the surgeon came in and said there was no hope of him staying with me postpartum. The OB said he would not cry. We got phone calls while we waited, and a few family members were in the waiting room. “Just pray, he will be just fine,” they said again.

They cut me. He cried.

I touched him, and he left for NICU.

Thirteen hours later, I saw him. Noah was the most critical baby in the NICU that night. “The CT scan shows no proof of brain activity.”

“What does that mean?”

“It appears your son has hydroancephaly. He has a healthy brain stem that is keeping him breathing and crying. But, he will not do more than that. Brains cannot grow from nothing.”

I argued, “That is not what he has. Hydroancephaly is not a marker for L1.”

Later that night, a nurse and a neonatologist came up and told us Noah had seized. Possibly, Noah did not have hydroancephaly. The neonatologist’s cousin had hydrocephalus and was in med school. They said Noah “would be just fine.”

Noah is now 9 months old. At least once a week, someone still tells us, “Noah will be just fine.”

I want to be honest with you. You are aggravating the hell out of me! Stop saying that! Pick a different phrase. Be positive in a different way. If you can’t think of a different way, say nothing.

I get it. Kids develop differently. Its stressful when your 6-month-old can’t sit unassisted, your 11-month-old is not walking, your 2-year-old says one word at a time, your 3-year-old won’t poop on the potty and your 6-year-old won’t add apples.

But L1CAM syndrome is not like that. It is not understood. Many doctors have never heard of it. It’s not just like your baby who missed a milestone. Realistically, my child has special needs.

Instead of fixing him, love him.

Instead of praying for different, pray for peace.

Instead of wanting him to be just fine, want fantastic miracles!

No, my child will not be just fine. He is, and will remain, just amazing.

Follow this journey on Freshly Messy.

The Mighty is asking the following:What’s one secret or truth you wish you could tell others about your experience with disability, disease or illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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To the Special Education Teachers Whose Jobs Don’t End When School Does

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To my son’s special education teachers,

The first thing I did after my son, Brock, was officially diagnosed with autism was call the elementary school in my town. I was completely lost after being handed a stack of paperwork with a “Good luck, you got this.” I wanted to see what services they offered if I decided to enroll him in public school.

I was transferred to the head of special education, Mrs. Carlson, and she immediately put my mind at ease. She added calm to my current storm, and it was everything I needed at that time. She didn’t say “I’m sorry,” which I was used to hearing after people learned of his diagnosis. She didn’t leave me feeling anything besides hope. I needed hope in that moment because I felt stuck — stuck with a stack of papers and nowhere to turn. She told me everything I needed to know. She said not to worry about anything but deciding what I thought would be best for Brock, and the services the school provided if he qualified for special education.

I decided to enroll him in public school, and I’m so happy I did. My son is now in first grade, and it’s his second year receiving special education services. This is everything I’ve wanted to say to my son’s special education teachers, Mrs. Carlson and Ms. Schueller.

I feel like I’m constantly thanking you both, or maybe I’m not doing it enough. As you know, I was scared to enroll Brock in public school (and spent a lot of time second-guessing my decision), but I had to admit to myself that, with his special needs, I couldn’t fully help him the way he needed. It was hard as his main caregiver to make a decision like that, especially after spending almost six years being the only one to care for him. I spent a lot of time researching schools and decided to choose yours after having a heartfelt discussion with you, Mrs. Carlson. I haven’t regretted that decision once.

As teachers you spend the most amount of time with our children (second to the parents, of course), so thank you for taking such good care of my son.

Thank you for always having Brock’s best interests at heart. Every time we’ve met for a meeting, chatted on the phone or through email, if an issue arises, you include me right away and do everything to solve it.

Thank you for always making sure he receives the services he deserves. And thank you for never making me feel like my rare requests for Brock’s education aren’t important, and implementing them into his education plan when I do have them.

I know you have more students than my son, but I appreciate you never reminding me of that fact. I also appreciate you not treating my son like a number or diagnosis. You see him for who he is: Brock.

I love that you both celebrate his successes with me. When he accomplishes something small or big, you call or email me right away because you are truly just as excited as I am. Like that time he worked through his anxiety and spoke in front of the whole elementary school. I had messages from multiple teachers because you all knew how big that was for him.

I didn’t know what my expectations were for Brock’s teachers when I enrolled him in school. I just hoped we would get along. You have far surpassed my expectations. You don’t just care about Brock during the school year. Ms. Schueller — you drove over an hour to walk alongside my family and friends to raise awareness for autism and support Brock. You also checked in during the summer to see how he was doing. Mrs. Carlson — the letters you sent Brock in the mail during the summer made him light up and feel like he still mattered even though school was out.

A parent/teacher relationship doesn’t have to be difficult or tense. We all care about the person we’re fighting for, and I’m glad we can stand together and fight for Brock. We’ve laughed over the silly stories he’s told and cried when he did something that seemed impossible previously.

You are a big part in shaping my son’s future. Thank you for always being team Brock — because he’s the most important in all of this.

The Mighty is asking the following: Share with us an unexpected moment with a teacher, parent or student during your (or your loved one’s) school year. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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