2 Words Reassure Me When I Worry About the Future of My Child With Autism


When we first heard the A-word (autism), thousands of questions went running through my mind like a runaway freight train. One question chasing the next and the next and the next, until they all sort of crashed at the end of the tracks in a heap of a mess that was my terrified brain. All of those questions in that mangled up heap began with the words, “Will he…?”

Will he ever know I love him? Will he ever have friends? Will he be mainstreamed in school? Will he ever have his own language? Will he ever be potty-trained? Will he go to college? Will he get married? Will he have a family? Will he be able to live on his own? Will my beautiful, perfect little bird ever be able to leave the nest without grabbing and chucking me out of the nest first to provide him with a soft, safe place to land? Will he, will he, will he?

That runaway freight train in my brain raced down the tracks 10 years ago, and although it still sometime goes off the tracks, most of the time, it stays on a slow and steady course. Today, I still do not have all the answers to my questions about tomorrow. Does anyone? Although I may not have the answers, what I do have are signs. Signs of progress, signs of independence and signs of maturity. Signs that no longer have me obsessively wringing my hands silently wondering, “Will he?” but have me cheering out loud, “He will!”

Ryan has removed so much doubt and answered some of my questions, which has enabled me to confidently shout, “He will!” time and time again. For example, I have no doubt my son knows, without question, that he is loved and he undoubtedly, without question, loves back. As for the “Will he ever have friends?” worry, Ryan has two close friends who accept him for being exactly who he is. Does anyone really need more? Ryan has been mainstreamed in school since kindergarten. Sure, there have been bumps along the way, but thanks to amazing teachers and Ryan’s persistence to succeed, he has answered that question for me as well. The whole married with children thing, well, I don’t even go there… too much. It’s too far in the future since Ryan is only 14, and girls are just starting to show up on his radar. (Yes, I live in denial, and I’m totally fine with those girls remaining tiny blips on his radar screen for many more years.)

The biggest question, the one that keeps mothers of children with different abilities up at night, is the “Will he ever leave the nest… without me?” question. As for Ryan, I know he will, as soon as he figures out how much Tide goes in the washing machine and he can wash his own Hollister shirts. Yep, when that happens, my little bird will fly so far away that I hope he remembers how to fly back, at least for the holidays.

I have wondered and worried for years about my little bird, and I am just as certain that one day Ryan will fly the nest as I am his neurotypical brother and sister. Autism may makes things challenging outside the nest, but in many ways, my bird could fly out of our family’s nest today and succeed, and here’s how I know:

1. Ryan use to cry when I left him in a strange new place that was out of his comfort zone. Now I cry when he leaves me and goes into a strange new place outside of his comfort zone. The hugs I use to give him, the squeeze-y tights I use to give in order to reassure him that even though the world is confusing, he can maneuver just fine without me, have now turned into an obligatory hug from him letting me know he will be OK out there in that big, bad world. I know he will find his way.

2. Ryan use to always spend his time under the sliding board at preschool, alone. His days at recess in elementary school were often spent sitting on a bench waiting for recess to end so the routine of the classroom could begin again. Afraid to reach out to the other children because he didn’t understand how to play, he didn’t recognize their body language or facial expressions, so it was always easier for Ryan to be alone. Ryan still struggles with all of those things, but last week, he decided that perhaps messing up was worth the risk as he momentarily left the nest and trick-or-treated with other birds, not mama bird. Taking that risk lead to even more confidence, a wonderful experience he had never had before and an exclamation of “I never want this night to end.” He will have more nights like this.

3. Ryan use to berate me for not cooking his Velveeta Shells and Cheese long enough, for not using a colander to drain the pasta just so and for not putting the exact right amount of cheese sauce on the shells (never, ever use the entire bag). Now Ryan cooks his own shells and cheese, so my days of shells and cheese failure are almost behind me. I know one day he will be able to cook and fend for himself without me.

4. Ryan use to need me for everything, especially when it came to school. He has such a perfectionist nature that he fears failing at anything. I always had to reassure him that his work was correct, that his test would be easy, that he would succeed. Now he loves being independent. He loves being smarter than me. And he loves that he’s having success on his own. He will head off to NYU to become a computer coder, leaving mama bird in that tiny little nest eating scraps since I will be able to afford nothing else. (Feel free to make donations.) Later, mama bird.

5. Ryan use to have such extreme fears that leaving him on his own would’ve never been an option. The chance of a thunderstorm happening if we were out would’ve sent him running to the basement, freaking out in a corner and waiting for us to return home. Now, if I’m out and a storm passes through, I will call and check in and he tells me, “I’m just fine, Mother,” with an aggravated tone since he needed to step away from the TV, laptop, etc. I know he will live on his own and chances are be happier than ever without nagging mama bird.

6. Ryan use to have a visual schedule to follow to help him remember what to do and what happens next. These schedules provided Ryan a sense of security so he wouldn’t miss a step. Now Ryan remembers what’s next on his own, and if he forgets, he becomes frustrated, but he quickly recovers, making note of what needs to change so it doesn’t happen again. I know he will never pay a bill late or forget to pay his taxes.

7. When Ryan was younger, he would sometimes stumble out of the nest, going because he knew it was expected, he knew it was what he was suppose to do. Now, when Ryan takes off, he no longer stumbles — he soars with a grace and confidence I feared I would never see. He no longer feels like he has to go. He wants to go, and although it will be sad to watch him spread his wings and fly, oh how he’s earned it.

Autism or no autism, no mama bird knows what the future holds for their babies. As much as we want to hold on and keep them in the nest where we know they’ll be safe, we have to do everything we can to let them go and be ever so grateful they can. All we can do as we watch them soar from the nest is remind them that they will always have a safe place to land, and shout as they spread their wings and take off, “You will!

Follow this journey on The AWEnesty of Autism.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. 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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Girl Writes Heartbreaking Letter to Santa Asking Him to Cure Mom’s Crohn’s


There’s one thing this girl would rather have than toys this holiday season: her mother’s health.

Bobbie-Mae Chalk, 11, from Southampton, England, recently got an early start on writing to Santa. She penned a letter asking if he could please make it so her mother, who has Crohn’s disease, doesn’t feel ill all the time.

The letter reads: 

Dear Santa,

Please if you can make my mom’s life better and make her not feel ill all the time, I would really appreciate it.

Just PLEASE!!

Make her life more and more better, it hurts to watch her suffer, so please make it better.

If I had one wish in the whole world it would be to help.

Her mother, Debby Chalk, 31, was incredibly touched and shared the letter on Facebook.

“I was a little bit surprised as I always feel like I put on a brave face and hide my illness well,” Chalk wrote with the post, “but clearly nothing gets past her. Love her.”

“My daughter gave me her letter to post to Santa last night and I thought I’d share it with you guys. I was a little bit…

Posted by Crohn’s and Colitis UK on Friday, November 13, 2015

 

Chalk has had Crohn’s since 2006, and for the past two years she’s been having a lot of issues with medication and keeping the inflammatory bowel disease under control, according to Metro UK.

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10 Things Parents With Children on the Autism Spectrum Need to Know


I’m a 41-year-old author, autism self-advocate and government official with a diagnosis of Asperger’s syndrome. When I was a child, there was no appropriate diagnosis for me, so my family and I were pretty much on our own. I encountered some frightening and abusive people in my 20s and had to fight hard to get where I am now.

To parents of children on the autism spectrum, I give you these 10 tips in the hope they will help you and your child have a better life than I did and to help you avoid the pitfalls I made.

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1. Many people think they know a lot about autism or Asperger’s, but they actually only know a little bit.

Parents can struggle with unsolicited and unwanted advice from many quarters. My mom had a procession of women who tried to mother me “better” than my she did. One of them even told her I would have been better off with her. If you deal with this, remember parents are usually the best judge of how to raise their child. Develop a pat response for the people giving the advice and only accept advice that helps.

2. When your child is newly diagnosed, you may be confused and desperate for answers.

As an adult on the autism spectrum, I can tell you it will most likely work out. Autism isn’t a curse or a plague; it’s simply a different way of processing the world and responding to it.

3. When your child is newly diagnosed, you may want to “fix” or “cure” it.

As you might imagine, there are a good many charlatans and latter-day snake-oil salespeople trying to make a buck from your desperation. There’s no known cause of autism and no “cure.” If someone tries to tell you there is and follows up with a sales pitch, decline.

4. Children on the autism spectrum are all individuals.

There’s a saying about autism: “If you have met one person with autism, you’ve met one person with autism.” Your child is their own person and is as different to other kids with autism as two children with brown hair are from one another.

5. Adults on the autism spectrum can do everything other adults do.

Adults on the spectrum can study, have jobs, drive cars, have relationships and raise children.

6. People on the autism spectrum can often be told we can’t do things or will never succeed.

These low expectations come from all quarters, but they can frequently come from a position of love and care from parents who don’t want their children to be exposed to stressful experiences or difficulties. Whatever you do, resist the urge to shield your autistic child from every difficulty. A little adversity can help build resilience and independence. You don’t want to give your child an easy childhood only to condemn them to an unfulfilled adult life.

That being said, some adversity isn’t helpful and only causes misery. Bullying is one example of this. It doesn’t build resilience and causes trauma instead.

7. You are not alone.

There are many other autism parents in the world and many good resources for autistic kids and their parents can be found online and in the real world.   

 8. Autistic kids aren’t all geniuses.

But neither are they all below average intelligence. And I believe intelligence is a poor measure of a person’s worth or chances in life anyway.

9. Autistic children and adults might sometimes be trusting and naive.

Even if it seems hard to discuss these issues, instill a good deal of self-protection skills in your child, since predators seem to be able to spot a vulnerable person.

10. Your child is your child.

Autism is but one of their attributes. Even if they might not say it in so many words, they almost certainly love you as you do them.

Follow this journey on Jeanette’s website.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. 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.

To the Best Friend Whose Pregnancy I’ve Neglected


To my best friend:

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We’ve known each other since middle school. We’ve remained friends throughout high school, college, family losses, marriages, divorces and kids. In a twist of fate, you just so happened to introduce me, newly divorced, to your neighbor, newly divorced, and now we are happily married with a blended family of five — all boys! 

After one miscarriage and every complication imaginable during my pregnancy, including months of bedrest, our newest addition was born with hypoplastic left heart syndrome.  The only constant thing throughout was you, my best friend — just as you’ve always been.

So not only do I want to say, “Thank you” to you over and over until the end of time, but I also need to say, “I’m sorry.” When you discovered you were pregnant toward the end of my own pregnancy, you still stood right beside me through every moment of the unpredictable, frightening, whirlwind of emotions we all experienced anticipating the birth of my son. I feel as if I’ve completely neglected you throughout your pregnancy and not been the friend you were and are to me. 

Not that I’ve tried to — or Heaven forbid, wanted to — but I have. My sick infant son has taken all of my time, attention, even all of my emotions, to where I have little left to give. I haven’t been there for doctor’s appointments, to shop for nursery furnishings and baby clothes. We’ve barely discussed her arrival and how exciting it will be, and rarely have I even asked, “How are you feeling?” or talked about baby kicks and contractions. Throwing your baby shower sucked the life out of me. I dreaded it for weeks and still feel so guilty and selfish for feeling that way. It’s hard for me to see the gifts, the perfect nursery, and connect with the baby girl you’re about to be blessed with.

Let me explain why. I didn’t experience things like healthy ultrasound pictures, fun shopping excursions for baby stuff, a baby shower or professional pictures taken after the baby was born in all those cute little outfits. I haven’t neglected your pregnancy because I’m jealous or not happy and excited for you, but because I’m still grieving. I do have a beautiful, thriving, healthy-as-can-be baby boy, but I’m so consumed with the constant worry, anger, sadness and sorrow I often feel that I can’t find the joy and happiness I used to know. That I know is there for my best friend, my chosen “sister,” but I just can’t bring myself to express it. 

I wish I could have been the friend for you that you have been for me, the way we were for each other 10 years ago when we had our first babies. I hope you can forgive me and know I’m giving all I’ve got. I love you and your new baby as much as anything, and I’ll be there for you with anything you need. But for now, I’m still struggling. I still need you to carry me through as you have the last few months. 

I know you understand and would never hold it against me, because that’s the type of friend you are. But I felt like I just needed to say this to you: I’m sorry I may not have been what you needed and wanted from me. But I’m still here and always will be. I thank you and love you more than you’ll ever know. And I know our new babies will grow up to be best friends — just like our first babies are, and just like we are.

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Editor’s note: After sharing this letter with us, Marissa sent us this update:

My best friend just delivered her healthy baby girl via C-section, and I got to be with her the whole time, in the OR and all. Her husband works out of town, and the baby decided not to wait on him, so I was by her side. I believe I just made up for any time lost!

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to community@themighty.com. 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.

The One Question I Needed to Be Asked as a Black Woman With Bipolar Disorder


I believe being black with a mental illness is one of the hardest things to accept in the black community. Why? Because having a mental illness only means you’re crazy. That’s it. In my experience, there’s no room for understanding. There’s no acceptance. You’re classified as crazy and then you’re forgotten. How do I know? Because I have bipolar disorder, and for 11 years I refused to get help because I didn’t want my family and my peers to think I was crazy.

I had accomplished a lot when I was diagnosed. I was a college graduate, wife, mother of two small children, business owner and so much more. So I hid the fact that in 2004, I was told I had bipolar disorder. I was ashamed, embarrassed and angry that mental illness was threatening to tear apart my world. No one asked me if I was OK when I disappeared for months at a time and isolated myself from things. No one questioned when I’d go days without eating or sleeping. No one asked about why I would get aggressive or about any other of my erratic behaviors.

All I wanted was for someone to ask me how I was really doing. Do I need help with something? Am I OK? Anything. No one did. Instead, they just thought, “Oh, that’s how she is.” That label stuck with me as I ruined relationships, employment and business opportunities and other great blessings. I plowed through life like a bull in a china shop. But while I was losing my battle to be mentally stable, it seemed like no one cared. It’s as if black people didn’t have mental issues. We’re either crazy, cursed or no good.

Imagine that.

No one bothered to ask me the right questions. No one considered that I might need help. No one asked, “You’re acting out. Do you need to go see a psychologist or a mental health counselor?”

That’s the one question I wish someone had asked me. That question would have changed the course of my life. That question would have made me take a real look at my behavior, and could have driven me to get the help I so desperately needed. Instead, it wasn’t until my primary doctor noticed something in me didn’t seem right that I finally saw a mental health counselor. And even then, after I received my diagnosis, I refused to get treatment because when I told my husband and mother, they rejected the idea.

They didn’t know how much I needed to be asked, “What can we do to help you?” “Where can you get help?” “What does it mean to be bipolar?”

Those questions could have helped establish my support system. But I fought alone, trying to determine what was real and what my mind was twisting up. I experienced so much devastation because I was alone.

But I don’t blame them. I blame stigma. I blame societal ideations that I believe say only white people have mental illness. I blame the lack of education and the health disparities that still plague minority communities. These are the things that keep us from asking the questions to get help.

I finally started to get help in April of this year. I got tired of losing a battle with stigma. Now, I’m on the road to recovery. Now, I want others to know they can get the help they need. Now, I’m transparent and share my story because I suffered for so long in silence and denial.

Now, it’s my time to lead others into the light to make their tomorrow a better place to be.

To hear more of Ivy’s story, watch the video below: 

The Mighty is asking the following: What’s a question you wish you were asked as someone living with a mental illness? How would you answer that question if someone did? If you’d like to participate, please send a blog post to mentalhealth@themighty.com. 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.

The Proper Etiquette Guide to Gawking at My Special Needs Family


When gawking at a family with a child who has special needs, please remember to do the following:

1. Be sure to wear a disgusted look on your face. This will help the family to feel at ease with the situation.

2. Walk right on up to the family and stand within their personal space without saying a word. Don’t forget about #1!

3. When walking by a child with special needs, make sure you do a double-take so that you can get a better look. Don’t worry, the family won’t see you!

4. Shush your child who openly asks an innocent question and turn him or her away ashamedly. Then do #3 when your child isn’t looking.

5. Inviting additional family members to your gawk spot is always welcomed. Just make sure you call for them loudly enough that the family of the child being gawked at can hear you!

Yes, this is all rather tongue-in-cheek — and these are all situations we’ve encountered thus far in our short time of having our daughter, Abby, out in public. Seriously, though, I hope people will consider how they would like to be treated if they were in this situation. Sometimes, I just get tired of being a spectacle. Don’t I have every right to take my child to the boardwalk and enjoy some time as a family?

This may not be the feeling of every parent of a child with special needs, but I would venture to say that most feel the same way we do: If you have a question, just ask. We are open books and love to tell people about the miracles being performed on our daughter! I would much prefer to answer a question than to have people catching flies with their gaping mouths. I feel like it’s much more polite to ask a genuine question than to “sneak a peek,” do the double-take (which I always catch!), or — the worst — openly stare in horror at our situation. Don’t you think we know that having a child on a ventilator is not a good thing?

We encountered a few Boy Scouts the other day who asked some wonderful questions about Abby’s tubes. We so appreciated their openness and willingness to ask about her instead of just staring. 

I’m not putting anyone down, and I don’t mean to condemn. I’ve been there. I used to be the one to shush my son when he asked why that man is in a wheelchair. I will even admit to doing the double-take. I never meant any harm by it, and neither do most people (the gaping-in-horror woman might have…), but I would encourage everyone to really consider how they would like to be treated in this situation. If you need some real-life experience, come hang out with us one Friday night on the boardwalk. I think our friends had a real eye-opener.

Because really, all we want is just to blend in with the crowd.

Follow this journey on Life as a Leach.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to community@themighty.com. 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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