When a Little Girl Asked Why My Son Can’t Talk Like Her

I can’t tell you how often I hear, “Don’t compare your child to others.” I’m also guilty of telling other parents and friends this same thing.

But I’ve never really believed it.

We naturally compare our kids to others. We compare ourselves to others. We compare our families to other families. And I don’t think we do this out of jealousy or competition. I think we make comparisons because we want to fit in. We particularly and desperately want our children to fit in. It is a hard-wired mommy concern. It’s why we do what we do. (Do you really love doing annual holiday photo cards and taking young children to Disneyland and going on all those playdates? I don’t love it, but I do ’em all.) While you and I know that fitting in isn’t of the utmost importance, it’s hard for our kids to realize this at such a sensitive and insecure stage. Even though you and I know conformity isn’t “all that,” we mighty still want it, at least part of it.

I’ve been thinking about this a lot, ever since my neighbor’s child said something about my son’s speech delay. She is nearly the exact chronological age as Ben (4) and she is a highly verbal child. Ben, on the other hand, can barely say his own name. He refers to himself as “Beh” and is limited in speech due to verbal apraxia. She asked me, “Why can’t Ben talk like me?” I felt a wince of pain in my heart but pushed it aside and answered her question. A year or so ago I would have held onto that pain, but I think I have gained more perspective and confidence in Ben’s abilities in the past year.

We might always compare our kids to others. But it’s important to do so with perspective. Be cognizant that your child is unique, and always keep your focus on both the future and the past. Some typical parents don’t have to worry about the past; they might be able to keep looking forward. But as a special needs parent, I feel tied to it. I have to keep looking back, comparing, analyzing and appreciating the past. It’s important to me to know what other kids are doing and what we have to aim for. It’s hard to compare without sadness or jealousy, and it’s something I actively work on by reminding myself of the past.

As a doctor, I understand developmental milestones. I know it will take years and years of speech therapy and dedication on my part to help Ben talk like other kids. I can understand this with my doctor brain, but my mommy brain aches for him. It aches when I see other kids running, dancing and talking circles around him. I know he’s behind in his verbal skills. But I’ve also seen him grow immensely over this year. Already at age 4, he has faced adversities that my neighbor’s child will probably never face — and he is overcoming them. As the years go by, I’m gaining strength, too — strength to keep running this marathon alongside him.

I have also learned that Ben’s apraxia is an opportunity to teach others about our diversity and acceptance. While this seemed hard to do at first, it went over well with my neighbor. When she asked me about his speech delay, I told her all kids talk and learn differently and that it’s hard for him to make words like her. I stressed that it was a chance for her to help him with his words. She smiled and ran over to play with him. That part made my heart a little happier.


Former Michigan Football Star Opens Up About His Experience With Depression

“I’m from Ann Arbor and I was playing football for the University of Michigan, and yet here I was, 19 years old, hating myself and my life,” says former University of Michigan football player Will Heininger in a video released by Athletes Connected, a collaboration between the University of Michigan School of Public Health, the University of Michigan Depression Center and the Athletic Department.

“I had all the classic signs of depression, but didn’t know what it was,” he says.

The video (below) tells Heininger’s story. The young football star silently experienced depression until an athletic trainer noticed he wasn’t doing well and set him up with therapy. The video is part of Athletes Connected’s educational campaign to teach athletes about depression and the benefits of seeking help. It was developed with initial funding from a National Collegiate Athletic Association (NCAA) Innovations Research and Practice Grant, according to its website.

At a time where 13 percent of college students have been diagnosed with depression or an anxiety disorder, a study found only 10 percent of athletes who showed significant depression or anxiety symptoms used mental health services, according to the NCAA. The Athletes Connected program aims to combat that. Along with presenting videos like Heininger’s, the program also holds informational presentations for student-athletes and coaches, as well as drop-in support groups.

Based on research done on the pilot phase of Athletes Connected, the program is having a positive impact on University of Michigan athletes. After going to the support group, 67 percent of respondents to a follow-up survey reported they used one or more anxiety-reducing strategies taught during the session. After the presentation, student-athletes said they were “more comfortable discussing mental health issues with their teammates.”

“I learned that depression is a diagnosed illness. It’s common, especially among college students. And it can be treated,” Heininger says in his video. “Because I opened up and got help, I became a better football player, a better student, a better friend and a better person.

You can watch Heininger’s story below: 

What My Son With Autism Taught Me After His Chorale Performance

I see their looks. I see their stares. I see their smiles bordering on a smirk. I see their patronizing high-fives. Sometimes, I wish I had a blindfold.

I hear their voices. I hear their silence. I hear the way they speak to him as if he were a young child. Sometimes, I wish I had ear plugs.

I feel my sadness. I feel my anger. I feel the ache deep in my heart. Sometimes, I wish I had no heart.

These feelings often sweep over me and settle on my chest, directly over my heart to the point of suffocation. But then the feelings go as quickly as they came, leaving me to breathe easy once again. These moments and these feelings are few and far between, but when they come, they leave a scab that I tend to pick at for days until eventually the scab heals with just a small scar visible only to me.

Kathy Hooven the mighty.3-001

It was a hot summer day in a church built in 1825, which meant no Wi-Fi and no air conditioning. A group of teenagers gathered at the front of the church, sitting among the pews, giggling, chatting and warming up their voices. At the end of the pew, against the wall, sitting alone and seemingly unaware of the buzzing activity surrounding him, sat my son, Ryan. Ryan sat quietly looking over his music and preparing for the day’s performance while I almost vibrated out of the pew. His sensory system, which is often so heightened, seemed unaware of all the buzzing activity going on around him. In fact, for a change, it was not my son’s sensory system on edge, it was mine.

It wasn’t Ryan who wanted to bolt out that old church door to escape the feelings that overwhelmed him, it was me. As I sat in the church, with little to no air moving, my chest felt heavy. I wanted to run out of the room with my old friends, Denial and Clueless, who had slid in next to me on the pew when I wasn’t looking, to escape what my brain and my heart were feeling. I had been so consumed with my watching, waiting and worrying for what had always been, there may have been a few moments that I missed what really was.

As parents continued to arrive and the temperature of the church continued to rise, I felt my heart beating in my chest and a trickle of sweat began forming on my brow. I watched, waited and hoped with anticipation. Would one kid talk to him? Would one kid see him? Would he talk to one kid? Would he see one kid? After all, he just spent a week with these kids at chorale camp so it was reasonable for me to get my hopes up, right? Nothing. Not even a nod, a hello or an acknowledgement on either side of the pew. And although my heart was pounding and my sensory system felt like it was on overdrive, Ryan looked happy, content and fine. As always, it was my problem, not his.

Kathy Hooven the mighty.2-001

But once the performance began, my son stood shoulder to shoulder with the rest of the chorale ensemble in front of the church. He blended in with the others. He didn’t stand alone, he didn’t appear “different.” There was no aloof stance, there was no awkward smile. There was just the music and his voice. Suddenly, I felt my heartbeat slow down and the church no longer felt so stifling.

Within the first few notes, the tears began to fall. Not his, mine. He immediately looked my way, seeing no one but me, and once he saw my smile, once he saw my tears of pride, his smile and his tears matched my own. You see, we have sat in many rooms together, the two of us, where no one saw him like I did. Where no one heard him like I did. Where no one felt him like I did. However, on this day, when his beautiful voice bounced off those church walls, I believe they all saw him, heard him and felt him as I always have. I had waited for that moment for a long, long time. Funny thing is, I don’t think Ryan has.

As he finished his song, there were smiles, there were high-fives and there were “good jobs.” Even after all that, a part of me still worried that their smiles, their high-fives and their “good jobs” may not have been sincere, that they may have been a bit patronizing because they saw “different.” But when I watched my boy take his bow then fight back his own tears of pride, I realized what matters most to Ryan is how sees, how he hears and how he feels about himself. Ryan spends little time concerning himself with how others perceive him. It’s a lesson we could all learn from him.

Had I worn my blindfold, had I brought my ear plugs, had I removed my heart, I wouldn’t have seen him, heard him or felt him, and there is no worry great enough and no pain deep enough worth missing that. As for their smiles, their high-fives and their “good jobs,” they may not have been insincere or patronizing, but, even if they were, I need to take a lesson from my son and recognize who and what really matters.

Once again, Ryan showed me it’s my problem, not his, and it’s a problem I believe he has already solved.

Follow this journey on The AWEnesty of Autism.

When ‘Free and Appropriate Education’ Didn’t Apply to My Son With Special Needs

For the last few years, professionals have been telling me my son is “complex.” I get it. The mixture of brain damage caused by fetal alcohol spectrum disorder and bipolar disorder confuses me, too. But when there hasn’t been progress in the four years he’s been in public school, I have to start questioning them.

According to national law, every child in special education is entitled what’s called a “free and appropriate education.” To me, this law is vague and open to interpretation. How do you determine, in black and white, what is appropriate? Does it go by the educator’s opinion or the parents’?

My son is going into fourth grade and he can’t read. Like, at all. Like, he’s still in pre-K for reading skills. The school tells me it’s where he is developmentally. But having some of the same goals as he did in Kindergarten doesn’t seem very “appropriate” to me.

So, like most concerned parents, I started digging deeper. Let me be clear. I support teachers and staff. I know they work hard and they love kids. I don’t blame them for my son slipping through the cracks. They are bound by flaws in a larger system.

When I started to question my son’s lack of progress, I was shown “proof” in the form of work he’d created. At first glance, it was impressive. The 9-year-old who couldn’t even identify all his letters at home had apparently written a whole sentence at school by himself.

Thank God for my detail-oriented husband who looked closer. There were four words. I can’t remember what they were so I’m going to make something up as an example:

“I see a crab.”

My husband asked, “So he knew how to spell the word ‘see’?”

The teacher averted her gaze. “Well, no. We helped him with that one.”

I looked at the top of the paper and realized the vocabulary word for the day was “crab” and there it was spelled out right on the page. So his teacher helped him write “see” and he copied the word “crab.” So the words he’d written in that sentence were “I” and “A.”

He’d spelled two one-letter words by himself. And I’m supposed to be impressed by this? This is their idea of progress?

The huge lack of academic progress was one problem. The other was his behavior. They “managed” him at school, which basically meant they tiptoed around him so he didn’t explode. The public school isn’t equipped to handle kids with behavioral issues. When he did have meltdowns, they called me to pick him up. I grew tired of this after the first couple times and told them if they couldn’t handle him, they’d have to find a school that could. I didn’t hear a peep after that.

Concerned our child was heading down the path to illiteracy, and potentially prison, we called an attorney. She took one look at his file and said, “What the heck have they been doing?”

The fact that he’d been physically restrained six times at school and there’d been no FBA (functional behavior analysis) or BCBA (Board Certified Behavior Analyst) involvement was a huge oversight. The attorney said he needed comprehensive evaluations done so we’d know his potential and the best way to teach him.

So the monthly Planning and Placement Team meetings started, and we tried to figure out the best school programming. We pushed for outside independent evaluations, pushed for a better summer program and eventually pushed for outplacement to a specialized school that could handle his behavior and severe learning disabilities.

As you can guess, lawyers are expensive. First I drained my savings account. Then I had to borrow money from family. And now we’re looking at getting a bank loan.

So where is this “free and appropriate education” I’m promised? It cost me $10,000 just to get the evaluations we need to understand how he learns and an adequate summer program. How is that free?

I’m angry.

I’m angry I can’t afford a family vacation this summer, that we had to cancel Friday pizza night and that my husband and I can’t even go on a date. And all for the very basic things my son needs to learn. All for him to know the difference between a consonant and a vowel.

If we didn’t look closely at his education program, he would’ve gone on like this, unable to read, not getting his sensory needs met, barely skating by in public school.

He deserves better. And according to the law, I shouldn’t have to pay thousands of dollars for the bare minimum.

And what about all the kids in the special education system whose families can’t afford a lawyer? We’re middle class and we can’t even afford it. We’re willing to go into debt for it, but what about those who can’t?”

It’s not fair the most vulnerable members of society are the ones who are overlooked, slip through the cracks, require court battles and legal fees to get their fair share of education. Where’s the equality now?

I guess “free and appropriate education” doesn’t apply to my son.

Follow this journey on A Phoenix From the Ashes.

The Mighty is asking for mental health related back-to-school pieces. Parents: do you have advice or a story about navigating the school system with a son or daughter with a mental illness? Students: Do you have a back-to-school story or tips for maintaining your mental health while in school? 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.

Girl With Orioles-Themed Prosthetic Hand Has Baseball Wish Fulfilled

Hailey Dawson is a huge fan of the Baltimore Orioles.

The 5-year-old got to throw out the first pitch at the Orioles vs. Athletics game Monday, August 17, using her Orioles-themed 3D-printed prosthetic hand, ABC News reported. She tossed the ball across home plate to her favorite player, All-Star Manny Machado, in Camden Yards stadium as the crowd went wild.

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Via haileys_hand on Instagram

Hailey has a rare congenital condition called Poland syndrome which has resulted in her right hand and pectoral muscle not being fully developed. She uses a prosthetic device created by the engineering department of the University of Nevada Los Vegas (UNLV) to help her grip and hold things, according to the Major League Baseball website. Hailey had her prosthetic done in orange for the Orioles and added the team’s logo as well.

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Via haileys_hand on Instagram

Hailey’s chance to throw out the first pitch was more than fulfillment of a wish for the child, it was also an opportunity to raise awareness about affordable prosthetic devices.

Ultimately, the goal is not just to have her dream come true, but to expose the hand and that people can get this hand. And it’s available to anybody,” Hailey’s mom, Yong Dawson, told MLB.com. “It’s so easy, so cheap — especially for someone who is a kid, their arms are growing, their hands are growing… I just wanted it to be out there, that, ‘Hey, you can get this.'”

Watch Hailey’s pitch in the video below: 

When Your Child With Special Needs Doesn’t Receive Any Invitations

The summer is almost over in Massachusetts, and the kids will go back to school in a few weeks. In many areas of the country, they have headed back already.

As much as I don’t look forward to returning to the rigorous school routine, there is a relief in knowing that the summer is coming to a close. I have three boys, and our weeks have been filled with getting them to different places with their friends. They have received invitations to sleep over, invitations to ball games, invitations to the beach, invitations to go fishing and invitations to the movies. That is, except for my middle son, Davis, who didn’t receive any invitations this summer.

I never get the opportunity to say to Davis, “It’s for you.” I would give anything to be able to say to him, “This text is for you. You’ve been invited to the movies.” Or “This phone call is for you. You’ve been invited to your friend’s house.” Or “This invitation that we received in the mail for a birthday party — it’s for you.” And as heartbroken as I am that I never get to say these words to him, I’m even more saddened when he asks me who he’s going to play with. The answer is I don’t know. At 12, he no longer wants to play with his mom.

I believe this is the most difficult part of having a child with special needs. The medical issues, the extra financial cost, navigating the school system and the longterm concerns are significant, but the real weight comes from this: The lonely summer days, knowing you have this wonderful human being as a child, whose entire summer could be changed by a single invitation, and realizing that the invitation may never arrive. Knowing your wonderful child deserves the social invitation that is easily extended to others, but that won’t be extended to him, unless you intervene.

So I will accept that responsibility. I will make the phone call next week, and I will send the text. I know a lot of children with special needs who would be happy to accept the invitation I can extend. And I will ask all of the wonderful volunteers who are so available throughout the school year to remember us next summer, to step outside of the organized programs and know that we would love to see them across the break.

If I’ve learned anything from being Davis’s mother, it’s that things may not always play out as I wish they would, but we’ve landed in a pretty amazing community, and there’s no need to go it alone.

The Mighty is asking the following: Tell us about a time someone went out of his or her way to make you and/or your child feel included or not included. 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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