I Can’t Predict the Future for My Son With Autism, but I Do Know This

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Nathan’s story began the evening of April 24th, 2009, his birthday shared with his twin brother, Matthew.  The day that my most important and much dreamed-about title was given to me: the title of Mom. It was not easy getting there, and at some points I never thought it would happen, but it did and I was doubly blessed.

Infancy and the newborn period were pretty uneventful. They both developed and grew as would be expected. It was not until Nathan was getting close to 18 months and not walking that I began to notice some delays. Then there came a point that I began to notice his speech was delayed and that he actually stopped saying words he previously said.

We had him evaluated and he began speech therapy at that point. Further behaviors, such as rocking, started to put autism in the back of my mind. But then I would think, he loves hugs, he is affectionate, he may not seek out other children but he is not totally anti-social. In addition I had many telling me not to worry about it, that one day he would grow out of it and start talking. That day did not come.

I went to my pediatrician who at first said the same. He went right over to her in the exam room and snuggled up to her, but what she didn’t realize at that time is that he didn’t do that for socialization; he did it because of the computer she had. He loves computers! As we talked, she did recommend an evaluation. Since it was an 18-month wait for the pediatric developmentalist, we were referred to a pediatric neurologist.  There is where we heard, “Yes, your son is on the spectrum.” Once we saw the developmentalist, he was officially diagnosed with moderate autism.

Sometimes I think, would I want Nathan without autism? Most days I say this is who he is, and I really would not change him. He is such a love; he sees no evil, nor does he have one mean bone in his body. At the same time, I know bad things are out there and he might not recognize them when they’re in front of him. This is what keeps me up at night. The bullies, the ones who don’t understand autism or special needs children. I worry about them. But he has an amazing support system, from his therapists and teachers down to the kids who love him at school, and I know they will protect him.

I struggle with his anxiety and at times it is more than he or I can take. There are some days both of us are in tears. Family outings are very difficult because we never know if he will be able to tolerate it. But we have been blessed. Many families have to take out second mortgages on their house, have to move, or otherwise go into incredible debt to get their children the therapies they need. We have not had to do that.  Nathan has gotten services since he was 2.

Autism is a journey, and I don’t know what the future holds for Nathan. What I do know is that he has a team and a family that will help him to grow and develop into the person he will become. What I do know is that he is very intelligent and he amazes his teachers and therapists every day. What I do know is that all of us want to unlock what is in his mind that’s left unsaid.

What I do know is that Nathan is a gentle spirit, and he can be a mischievous little boy who likes to aggravate his brother with a laugh.

We are a family. We welcome the ups and the downs as a family. We have our good days and we have our bad days as any family. Are there trying times? Yes there are, like the struggle of getting Nathan to poop on the potty and getting him out of pull-ups.

Are there joys? More than I can even list! They are bountiful, such as hearing Nathan trying to say a new word, letter or number. Seeing him play with other children at daycare. Seeing Matthew interact with other special needs children with love. Getting a great, big hug and kiss from Nathan.

In the end, we are a family living with autism. Would I wish for Nathan to be different and not have autism? Honestly, I don’t think I would.

He is a beautiful child. He is a beautiful spirit. He is such a gentle soul. This is Nathan and I accept him for who he is and who he will become. And I am so incredibly proud to have him as my son.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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The One Piece of Autism Advice ‘New Me’ Would Share With ‘Old Me’

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Dear the Old Me,

Yes, I’m aware that technically you’re 11 years younger than I am. An entire decade ago I was 34, which now sounds fabulously young, but the weight you carried and the worry that creased your brow 24/7 (thanks, by the way, for the giant brow wrinkle and frown lines the New Me currently sports) made you old before your time. The Old Me, if only you knew then what the New Me knows now, I could have saved you many sleepless nights and the New Me hundreds of dollars in Botox treatments.

You know, the Old Me, all your researching, all your web surfing, all your expert advice-seeking and all that label shopping only made your frown lines deeper in the end (again, I thank you). I wish you would have turned off your brain and just listened to your heart, like the New Me tries so hard to do today. You see, the Old Me, no matter what you read, no matter what you heard and no matter what “they” said, your heart always knew. Your heart always told you, “He will be OK.” But like many mothers who first hear the “A” word, fear took over the brain and completely stifled the message coming loud and clear from the heart.

On the days his screaming deafened you, unaware that even the slightest bump could feel like an electric shock rippling through your boy’s nervous system, I could have told you, “He will be OK.” During the horrendous years of potty training when it felt like all you did was hang out in the bathroom while you begged, bribed and threatened only to throw one more pair of Buzz Lightyear underpants in the garbage (money that could have easily gone toward filling that frown line), I could have told you, “He won’t go to school in a pull up.” When his overloaded sensory system reached its breaking point and caused inexplicable meltdowns from seemingly minor events like skipping an aisle in the grocery store or putting on new sandals, moments that not only made you feel like something was “wrong” but also ripped your heart out because you didn’t know how to help him, I could have told you, “One day he will find and use his words to help you understand.”

The New Me wishes I could have held your hand as you sat alone with tears streaming down your face in the daycare parking lot as you watched all the “normal” kids playing, running and talking while you silently prayed that today would be the day you wouldn’t find him alone under the slide. I wish I could have comforted you as you cried yourself to sleep wondering, “Will he go to school?” “Will he ever have a friend?” “Will he ever hug me back?”and, the one that kept you up night after night,”Will he ever know how deep my love for him goes?”

I’m so sorry, the Old Me. I wish I could have warned you how detrimental it is to socialize with Denial, Clueless and Guilt. They may have helped you cope sometimes, but in the end, all they were ever going to do was hurt you. I wish I could have pulled you away from their negative influence and introduced you to Acceptance, Awareness and Different. As the New Me knows, they’re much better friends to have around and would have gotten you through those harder days without quite so much wine and quite so many tissues.

I could have told you, the Old Me, but you wouldn’t have listened. You needed to see it, feel it and live it for yourself. Yes, maybe knowing then would have made life easier, but would it have made now any better? Would you have appreciated all the gains, progress and joy if you knew what was to come? Would you have pushed him, pulled him, fought him and made him uncomfortable in the end if you knew he would be OK? Would you have worked so hard to prove your love if you knew he was always aware of your love and that he loved you all along? Warning you about Denial, Clueless and Guilt would have gotten you nowhere because at the time, you needed them. They were the friends who made you recognize later how much better life is without them and how friends like Acceptance, Awareness, and Different allowed you to see the beautiful boy standing right before you.

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So yes, the Old Me, I could have saved us hundreds of dollars in Botox and wine if I would have just said, “Listen to your heart.”

But you had to hear your heart without me. You had to hear your heart when you were ready. You had to watch him struggle to see him shine. You had to feel the pain to experience the joy. You had to doubt before you could believe. You had to hang with Denial before befriending Acceptance. You had to see him and not see autism. And as painful as those years were then, you had to live them to get you where you are now.

You know what’s funny, the Old Me? Ten years from now, the New Me will be The Old Me because I will never stop growing, learning and loving this awesome boy. The one thing that won’t change in 10, 20 or even 30 years is that my heart now guides me instead of my fear-induced brain. Sure I still worry from time to time, but my heart is no longer silenced by fear. I hear my heart loud and clear when it tells me to stop eating a sleeve of Thin Mints in one sitting and when it whispers,”I don’t think doctors meant that much red wine is good for your heart (shut up, heart).” But the message I hear the loudest, that no fear can ever hush, is, “Never, stop believing in him. He is going to be OK.”

My biggest regret for you, the Old Me, is that I wish you would have heard that, too.

Love,

The New Me

P.S. Please start a savings account for that frown line. It’s gonna get deeper.

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A solo. Yeah, the Old Me would have never believed it. Ryan and the New Me have come a long way.

This post originally appeared on The AWEnesty of Autism.

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When a Little Boy Asked, ‘Is She Still Autistic?’

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I had a great, albeit brief conversation with a 7-year-old about autism this week. We were at a small gathering with the kids from my daughter, Little Bird’s old school. As soon as we got there, LB and I headed down to the basement to where all the kids were playing. There were three boys and one girl, LB’s BFF, a typically developing, stunning sweetheart who happens to have brothers with Fragile X.

We reached the bottom of the stairs and one of the boys said, “Hey! {Little Bird} is here! We need to be extra careful now!” On the one hand, I really appreciate that he was looking out for her, but on the other it makes me a little sad. Then, it happened:

Boy: Is she still autistic?

Me: Yep! Hey, do you still have brown hair?

Boy: Ummm, yeah. Maybe you should give her an operation so she’s not autistic anymore.

Me: But why would I want to do that? We love {LB} just the way she is! {LB’s BFF}, don’t you love her just the way she is?

Girl: Yep!

Another boy: I like her, too!

Boy: But if she isn’t autistic, she could do more things like have sword fights and fencing!

Me: Well, sword fights aren’t for everyone. Plus, you know there are a lot of things that she can do.

At this point, he went ahead and had a sword fight with the air. Then a little bit later, he came back to me…

Boy: Were you autistic when you were a kid?

Me: Nope. But you know what I was? Short! I’m still pretty short, huh?

Boy: Yeah.

Me: Yep, and I’m okay with that.

Little Bird was having a rough time there and we left with her in snotty tears, which always sucks. That doesn’t happen a lot, but it does happen — the whole leave-before-the party-is-over (or sometimes even getting started), knowing-that-the-“normie”-parents-are-feeling-sorry-for-me thing.

Still, I define this experience as a success. I was reminded that kids are curious, they want to know about autism, and they have questions. So, parents, let’s answer those questions. Let’s pounce on these teachable moments. Not only are these kids the peers of our babies, but they’re the future advocates. I believe the children are our future. Teach them well and let them lead the way.

Including our children in activities with typically developing peers and educating those neuro-typical kids is the biggest and best anti-bullying campaign I can think of. What a great way to raise emotionally intelligent and compassionate kids. So, do you want a play date?

This post originally appeared on I’m Just That Way.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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A Letter to the Disease That Tries to Cut My Life Short

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Dear Muscular Dystrophy,

What doesn’t challenge me doesn’t change me. Boy, have you changed me. But to be honest, I don’t really think about you all that often. I can’t even really be mad at you at this point. After all, we grew up together, and I’ve never known life without you. Certainly you’ve made most aspects of my life more challenging, but if life were easy, it wouldn’t be interesting. The low points in life are what allow me to fully appreciate the small things.

You’ve made all physical aspects of my life a challenge. You’ve taken away so many of my abilities. You took away my ability to walk, then my ability to stand and now the use of my legs altogether. You’ve denied me the ability to sit up straight. You’ve stolen from me the possibility of ever feeding myself again. You’ve humbled me by forcing me to ask for help to use the bathroom. You literally leave me short of breath. Recently, you tried to stop me from ever eating solid food again.

But I can — and do — live without all those things. Despite taking so much away from me, in a lot of ways you’ve also given me things for which I’m grateful. You’ve changed my overall attitudes and outlook on life. I appreciate all things so much more than I probably would if you’d never come into my life. You allow me, sometimes force me, to live in the present and be thankful for each and every moment. Because of you I know I need to treat everyone with a high level of respect. You’ve helped me reach out and find people who probably wouldn’t have been in my life without you. My caregivers, my tutors, my physical and occupational therapists, my doctors, just to name a few. You’ve blessed me with the ability to trust, since I must rely on others for every single aspect of daily living.

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Sometimes you really scare me. You almost killed me a few times — one time in particular. You stopped my heart and convinced my doctors you were going to end it all. They even started telling my parents to plan for my death. But I wasn’t going to let you off the hook that easily. I fought back. And I’m going to continue to do so; I don’ care how you feel about it.

So overall, Muscular Dystrophy, we might as well get used to one another because we’re not going anywhere anytime soon without each other. This isn’t going to end. And who knows, maybe one day somebody will find a way to get rid of you forever. Wouldn’t that be incredible?

Sincerely,

Gabe

You can read The Mighty’s story on Gabe here.

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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This Children’s Hospital Just Pulled the Cutest April Fools’ Prank

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Well, this is the most adorable April Fools’ prank we’ve ever seen.

To bring smiles to a few faces, Children’s Healthcare of Atlanta‘s service dogs have taken over the hospital’s social media accounts.

The precious pups started posting on Twitter, Instagram and Facebook on Wednesday, April 1, as they went about their therapy dog duties. We think the stunt is pretty (p)awesome.

Check out some of the shenanigans they’ve been up to in the photos below: 

Check out CHOA’s last photo project: Dreaming NICU Babies.

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Dear Health Insurance Company: Here Are 7 Ways I’ll Make You Rich

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Hi Company,

Listening? Would you be if this were titled “I Want to Help Give Your Customers What They Need”? Truth is, you’ll be more lucrative if you provide the best care — aka, treat customers like humans and allow them the right treatment. This isn’t a joke. Here’s how. 

1. Good customer service and healthcare means more business. Instead of being at the helm of your customers’ horror stories, you’ll be getting rave reviews. Self-explanatory. 

2. If you stop being stressful, your patients will be healthier. Poor service is making your customers sicker. I’ve collected salivary cortisol samples (stress hormones) in lab studies where subjects were exposed to less maddening scenarios than dealing with you, and their cortisol levels still surged. Chronic cortisol levels are associated with a host of conditions. Learn about allostatic load. A lack of control over health, work and ensuing financial strains are correlated with heart disease.

You’re a master of stress. From coverage denials to calls that get disconnected (me giving you my number in case we get cut off, and you saying you can’t take it. Then me saying, Can I have your name? and you saying you don’t have an extension). Your representatives hike blood pressure, heart rate and cortisol levels like it’s their job.

3. Stop rigid “customer satisfaction surveys.” You called my father about a specific call. He asked, Which instance? He’s been on the phone so much regarding his wife’s multiple sclerosis, he couldn’t pinpoint one. When he tried to get into a new inquiry, the rep asked him to recall an old date, prompting more scripted, robot questions. He proceeded to lash out at you. Your protocol brings out the worst in people.

4. Listen to more stories from customers. I woke up the other day thinking, “Good thing I have a treatment this week!” While standing in CVS on the phone with you (about a whole other issue), I triple-checked that my appointment was all set. You told me the infusion didn’t have prior authorization (the infusion center told me it did, so I had to play middleman today). I was then told another medicine is “not the preferred medicine.” Oh, but my body prefers it, and that’s where it’s going. Why throw a wrench in a regimen I’ve carefully titrated for years?

5. Listen to what the doctor is prescribing. Let’s not go with the mystery drugs. My sensitive body may have a reaction to the drugs you want me to have. Then I’ll have to get pumped with drugs that combat the reaction — you know what that mean$. Got your attention again? Think of it the way you understand: new mystery drug means more money for you when complications come. (OK, just learned you’ll let me have my “preferred meds” after I hit my high deductible. Fine, I’m willing to spend a ton now if you let me have what I need later.) 

6. Don’t be shortsighted about “unnecessary treatments.” Sometimes procedures that manage symptoms and cancer risks are “unnecessary,” and only emergencies are covered. Think big and practically — emergencies are more costly. And remember there’s a human who’s enduring the complications you’d then be paying for.

7. Know who to listen to about your business. I don’t hate you, Insurance Company. I want to help you, help them. I don’t need to do this muckraker journalist style. It’s no secret there’s muck, I won’t expose every maddening instance of it. You want to spend less money on me, and I want to be healthy. If my doctors suggest treatments they know will do that, please let me have it.

My desire to help make your customers less stressed and given the best health treatment will raise your profits longterm. Let’s help each other. Maybe we can be friends. 

Sincerely,

Angelica, your new sugar momma
[email protected]

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