Why I'm Looking for a New Neurologist

Yesterday was a tough day. We had our six-month review with my daughter, Zoey’s, neurologist (which really ended up being an eight-month review, but OK).

I had to process the entire hour-long visit on the two-hour car ride home. I cried the entire way out of frustration.

The neurologist saw her for one hour. That’s it — one hour. How could he possibly know her progress by only seeing her for one hour and without letting me explain her accomplishments? Zoey has autism, sensory processing disorderglobal development delay and obsessive compulsive disorder. She’s progressed in leaps and bounds over the past eight months, but he didn’t listen and it seemed like he didn’t care. Just because you have an MD after your name does not give you the right to talk right through me, talk over me, rush me out and treat my child like a number from the deli line.

I was told she’s made little progress, and I was questioned about how I work with her. He asked, “Don’t you listen and get instructions from the therapists on how to work with her weekly?” I felt judged as a parent. I showed him the video of her singing and tried to talk to him about all she’s done since he last saw her, and he treated her like a statistic. She is not a statistic. She is a human being, and so am I.

When did human compassion and caring for a patient get exchanged for “… Next!”I felt like he was telling me I wasn’t doing my job as a parent and that my child was nothing more than generic deli meat being passed back to me with, “Come back in six months.”

I will not stand for this. We as parents know our children — we see them every day. Zoey has achieved so much over the past 10 months: she now looks us in the face, she gives hugs, she sings and dances, she wants to be around us, she can eat at the table with us and she can count to seven, among many other things.

There are so many things that she’s doing now that she’s never done before, and it’s incredible. Before, she had stopped speaking entirely. She hid away and was in her own world, and I missed her.

I don’t miss her anymore — I’m getting her back every day. That is progress, and it hasn’t been slow. She will be 3 in five months, and we will then transition her to a developmental pre-Kindergarten program.

So I’m currently looking for a new neurologist. One who cares and who won’t treat her like a statistic, and one who will listen to me and my concerns and answer my questions.

Don’t let anyone treat your child as anything less than amazing.

Melissa's daughter
Melissa’s daughter

Follow this journey on Melissa’s Facebook page.


What I Want to Say to Anyone Who Tells Me, 'At Least Your Kid Talks'

“At least your kid talks.”

I hear this a lot. It’s meant to check me into reality that the autism I am familiar with isn’t everyone’s.  I get it, but here’s the thing. (Hey, it’s a blog. You knew the “but” was coming.)

There’s a difference between talking and successfully communicating. Yeah, my kiddo can now say lots of words. Some are even the four-letter variety that he learned from his dear old mom. I kind of wish he didn’t pick those ones up and that’s my own fault for saying them around him. I kind of also wish that he wouldn’t just decide, “Oh I’m just going to say this certain set of words all day. For everything.” It’s like he has thousands of words in his head and only about 20 or so of them actually come out of his mouth on any given day.

Which makes trying to have a conversation with him really freaking hard! Sometimes I ache just to be able to have a conversation with my kiddo that’s not like pulling teeth. The constant redirection. The fishing for answers to the simplest of questions. All the prompting. It grinds a gal down.

I’m not asking for a two-hour talk about the finer points of his day, but to hear, “It was okay” about how school went would be nice. Or even if it sucked. I would love to know that he was really pissed off that day. “Like they served hot dogs when the lunch menu clearly stated it was pizza day.” A legit reason to rant and rave. He can’t do that. He won’t do that. Sometimes I can only just sense he is mad and it’s a great big old guessing game of what’s wrong. When your kiddo screams “TATER TOTS!” again and again for an hour, you start to question why you are sending him to speech therapy to get him to talk in the first place.

mother talking with her son
Photo source: Thinkstock Images

There is the constant need for me to be his translator to everyone we meet when we are out and about. People will ask him a question like his age or where he goes to school and I can just hear his force field shields going up. He’s just staring at them in stunned silence or even better, totally not looking at them at all and suddenly singing “Feliz Navidad.” Then I get the look of either “What’s up with this kid?” or “Oh my god! Your kid is so rude.” Nope, there’s nothing wrong with him. He’s just autistic, blah, blah, blah. And I have to prompt the kiddo to respond.

I’ll admit it. I’m so tired of having to do this. All the freaking time. Sometimes though, we get lucky and he’ll quote some Pixar movie. If we’re hanging with another family from the autism tribe, they usually can quote right back. That’s always cool when it happens, but those moments are usually few and far between.

I wish your kiddo could talk, too. I really do. I don’t wish for anyone to have a nonverbal child. It’s even harder than what I have on my plate. I know you are thinking, What I wouldn’t give for my kid to drop an F-bomb. I would love for that to happen, too! We could sit together and laugh and bitch and moan and be all “OH MY GOD!! Why did he have to say that in Target????” I want you to have that problem, too. Just realize it’s not the perfect problem. It’s just a different one.

I have to wonder how a kiddo can perfectly mimic the voices from a YouTube clip but can’t order a side of fries for himself at the diner. Or when he can say it, it’s done at such a whisper that no one can hear it and they ask again what he wants. He then gets so upset that they didn’t hear him and he got it wrong that he doesn’t say anything at all. I have to wonder how in the world he will manage at all when I am not there to help.

Then there is the fun of telling him “No” to when he does make his needs known. We badger the living daylights out of him to “use his words” and when he finally does, he doesn’t get what he asked for. This has confused him to no end. I feel terrible when this happens because I know it was a struggle for him to get those words out. There I go, telling him “NOPE.” I know this has to do a number on his head.

None of this is easy and no one has it better than you. That’s what I have to try to remember. Everyone has plenty on their plate and it’s not always what they ordered.

This post originally appeared on Autism With a Side of Fries.

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daughter with her hand leaning against her face

When My Daughter's Classmate Said Something About Her That Upset Me

I want to tell a story about a week whose hours passed anxiously and left me feeling as though I woke up somewhere I had not intended to be.

It began with a couple of statistics I came across a year ago.

A 2012 survey showed that 63 percent of the participating kids with autism spectrum disorder were bullied. One study found that kids with autism are 28 times more likely to attempt suicide.

I wish I could unlearn this. It doesn’t loom, not exactly. It is more like a dark cat that saunters through our weaker moments. A pause, a glance, a reminder. It takes my breath away. But a pause is just that and life resumes its normal speed, and the creature wanders away…

I don’t think about these numbers more than I should, more than any parent in our situation would. I don’t think about them at all when it is bright and sunny and we’ve had a great week at school. But the weather turned cold and dull last Sunday and I knew they would come creeping through. Feelings of distance and uncertainty followed me around the rooms of our house where we were stranded inside, looking out the windows, waiting.

I tried to find my way out with friends, but the air was stifled, I couldn’t connect. It is hard for me to keep up with conversations about home décor and crock pot recipes, when my mind is suspended elsewhere: Who do I need to speak to next, are we out of intake? Has our case manager been assigned? What is the next step, what’s working, what’s not working, the ABA bill was how much this month? I am a rodent on a wheel, spinning in circles, desperate for answers. I know I need this, camaraderie outside the world of special needs. And I remember being there, lost in a Color Book. Can’t I go back? Paint is important. I believe that. Don’t I?

It rained all the way home.

Tuesday was our parent support meeting. The woman that leads the group is the mother of a kind and beautiful 9-year-old girl. This has been a big month for them: Georgia legislators pushed through the bill, named for her daughter, which will require insurance companies in the state to cover autism therapy interventions for preschool age children. They have improved the lives and the futures of no less than 32,000 families. That was last week. This week the same girl was bullied by some kids at her school. Because she has autism and an Instagram account. The sentence purrs and the week moves slowly.

Friday I went to the school to have lunch with my daughter and a nice-enough boy sat next to us and opened his lunchbox. He looked at me and said, “She has to ask the teacher to help her play with people at recess and if they don’t want to play with her she cries. She cries in music, too. She puts her hands over her ears and cries and cries and cries.” And then he turned back to his lunch and went on about his ham and cheese. And the numbers rose out of nowhere, circled my legs, told me to get her out of there, take her home to where it is safe and dry and there’s no one to tally up what behaviors are inadequate, unacceptable.

I should have told him about last year, how much better we are now, how much progress has been made. I should have explained that the music hurts her, like needles in her ears. She told me once it feels like it is squeezing her brain. I should have done sensitivity training with the classroom. Read them a book that explains what a sensory processing disorder is and how a perfectly lovely day can be ruined by escalators or polyester or people singing in unison. I should have bought her those headphones.

I am angry. With the boy and the cat and everything that is easier than this. I called my mother and got a pep talk. Everyone has unshared problems. It is all relative. Keep your chin up.

Saturday: Dog grooming day. The clippers hum brilliantly and the fur falls off in downy clouds. It’s the closest thing I have to a Zen garden. I was covered in hair when I finally stood up an hour later. Our toddler had been playing with the tufts, chasing them as they blew haplessly around on the porch, so I took him upstairs to shower with me. There we were, standing under the water, and he was laughing and laughing and laughing. And I could feel it: the week and the numbers and the words breaking apart into a collection of sounds and shapes that don’t mean anything without knowing what time will make of them. I see my son’s smiling face as he looks up toward the pressure and warmth of the shower. He is perfect, beautiful, happy.

I think: how well we are represented by the person we become when we quietly let go of superstition and the things that keep us separated and hold tightly to what is real and binding. We are more than pieces of life ambling through the weeks in a year; we are parts of a whole. And special needs are more than headphones and tears at recess, they are the landmarks of parenthood, of family, humanity. I pick my little boy up and hold him. The water is hot and wonderful. I could be melting.

I hear my daughters in the room next door, having a very neurotypical conversation about kittens and bracelets and bugs in the yard. The playground is miles away and autism is a small box filled with six letters and the memories we are learning from. I’m wrapping it up for you, our gift, our special needs. I don’t know what they will mean to you but I know they will be entirely relative.

It is important, all of it. Colors worth sharing.

Follow this journey on Betty Sweet Writes.

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Why Overhearing a Mother’s 3 Words to Her Son Made Me Flinch

After completing our ritual of returning books and examining the library’s fish tank, my son and I headed to the children’s nook. A woman and a boy were already seated in the comfy armchairs, reading. Philip pulled out a car from one of the toy bins. He pushed the car across the cityscape carpet. He didn’t follow the streets, nor did he say “beep” or “vroom.” He hummed and vocalized using his own unique repertoire of sounds. Hearing him engrossed in play, I turned to browse the board books.

“Use your words,” said the other mom. I flinched and glanced over. The woman was pointing to a frog in the picture book her son was holding. She touched the corresponding word. The boy was smaller than my 4-year-old, but appeared close in age. I suddenly felt… anxious? Annoyed? Jealous? Judged?

She probably thinks I should be doing the same with my son.

My son’s noisy play attracted the other boy’s attention. He leaned forward to watch Philip as his mother read until, no longer able to resist, he hopped out of the chair, picked out a car, and tried to play with Philip. Philip remained focused on the car.

The mom patted the chair, and the boy returned to his seat and book. A few moments later, the mother repeated the phrase, “Use your words.” I noticed that she paired a signal with the phrase: her index and middle fingers closed on her thumb, imitating a mouth.

Meanwhile, Philip’s vocalizing was becoming louder as he happily found a different toy to roll across the floor. The little boy got out of his seat once more, came over to Philip, and gestured in has face just as his mom had. “Oose or ords,” he ordered Philip.

Use your words.

I didn’t know whether to laugh or cry. Bless his heart, that little boy understood what his mom wanted and recognized that Philip wasn’t doing it. The mother looked at me, then smiled at her son and said, “Yes, use your words.”

I was tempted to bolt before I burst into tears, but I worried that yanking Philip away would cause a meltdown. Just then the other boy spotted a Curious George hand puppet on the floor. He picked it up and took it to his mom.

“Let’s find a book to go with the puppet,” she said.

As the mother of that monkey’s number one fan and an incurable busybody, I knew exactly where to look.

“Here you go.” I handed her one of Philip’s favorites.

“Thanks. I haven’t been to the library in years,” she said.

“We’re here almost every Saturday,” I explained.

“Does he go to school?” she asked, nodding to Philip.

I named the preschool, an integrated program for both typically developing children and children with disabilities like my non-verbal autistic son.

We discovered that her son is in a class just across the hall. I felt a pang of jealousy. Her son was in a full day classroom. Why didn’t I insist on full-day? I admonished myself. Maybe Philip would be “using his words” by now. 

I stifled my envy and guilt to ask, “Are you going to the PTO event next Saturday night?”

“I saw the signs, but I don’t know what it is,” she said.

I told her what I knew, including the time. I could see her hesitating.

“Well . . ” she began and then explained: she and her son were homeless. They were being sheltered in a network of local churches. The timing of the PTO event conflicted with the scheduled meal time.

“My son’s not developmentally delayed, I  just didn’t provide him with the environment he needed,” she confessed. She also confided that, in addition to being homeless, she is disabled. Suddenly, I realized that “Use your words” wasn’t a dig at me. It wasn’t about me at all.

I was no longer indignant or jealous. Here was a child that really needed to be in preschool all day, every day, not just for instruction, but for breakfast and lunch. Here was a mother, having been told the importance of reading to her child, had brought her son to the library. Here was a mother doing the best she could for her child under very trying circumstances. Here was a mother who opened up to another mom she thought would understand her and who, it turned out, needed to be understood, too.

Without using his words, Philip let me know he was ready to go.

“Maybe we’ll see you next Saturday,” I said before we left.

“Maybe. Thanks for your help,” she said.

No, thank you, I thought, but I didn’t use my words.

This post originally appeared on That Cynking Feeling.

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 to [email protected]. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

When a Coworker Caught Me Off Guard With a Question About My Son

One of the common early clues of autism is speech delay. That was the case for my son, and we’ve come to appreciate both — the spoken word and the ability to communicate in other ways.

Contrary to what doctors told us, we never bought into the notion that Darrin Khan would never be able to speak. Still, we taught him sign language until he developed the verbal skills to communicate with us. Signing empowered him then, and he still uses it on occasion today. Though he’s far from conversational, Darrin has come a long way verbally. The communication challenge now is when he’s at or nearing a meltdown.

Meltdowns are rarely about the moment. In our case, they’re typically rooted in being tired, over-stimulated, hungry, in pain or combinations of those four. It’s during those times when we have to rely on unspoken words because he simply won’t tell us. The most challenging situations are when we don’t know either the underlying issue or the issue of the moment.

He is a sweet boy, and we’ve been fortunate that he’s never been prone to violence like some kids, but lately he’s started hurting himself when he’s frustrated. It’s hard to explain the feeling of helplessness while your child is banging his head on the ground or hitting himself repeatedly on the side of his face. Any effort to stop him only escalates the situation.

We learned early on that our parental instincts and
experience weren’t always effective with him. It’s during meltdowns when tensions peak that we are reminded of this cruel fact. I wish I could say we’ve always been able to resist the urge to yell at him or physically restrain him when he’s melting down and hurting himself. It’s one thing to know that calmly and silently waiting it out is the only real solution, but quite another to actually do it.

Last week was pretty tough. He was unusually prone to meltdowns and we weren’t sure why. We eventually figured out that he had a sinus infection without the usual symptoms. During that week he communicated in a new way, which was a major achievement. He was on the verge of a meltdown at bedtime and we were trying to figure out the problem.

Fighting back the tears he simply said, “Draw.” He loves to draw, so we took it to mean that he wasn’t ready for bed. It seemed like a reasonable compromise given the week he was having, so I let him draw. He immediately drew a picture of a different bed in the house. Then I remembered that he told me earlier in the evening that he wanted to sleep in that bed. He was certainly capable of verbalizing this, but that’s not how it works when he reaches this stage. I asked him if he wanted to sleep in that bed. With relief in his teary eyes, he simply said, “Yes.”

We could have easily missed that clue. He’s got hundreds of pictures around the house and we’ve never viewed them as a form of communication. If we can get him to use drawing as a communication tool when he gets to this stage, we will have reached quite a breakthrough.

My own communication challenges are rather legendary and people often wonder what I’m thinking. I prefer to focus on the best of Darrin Khan when I write about him. I don’t want people to pity him and I want to share the amazing parts of him that most people don’t see. If I’m being honest about autism awareness, I have to include the full picture of kids like DK, which includes extremes in both directions.

I don’t want him defined by his weaknesses, his meltdowns or his autism, but they are part of the total package. It’s a package that includes stress we feel in public when he’s on the edge of losing control; the panic I see in my wife’s eyes while he’s hurting himself; the pain and despair I see in those eyes long after he’s back to his joyful self; the guilt I feel for being embarrassed during his more public meltdowns; the power of the word ‘retard’ to remind us how society views him; the looks of disapproval from people who might know, but don’t care; and the acceptance that, in spite of the support we get in this fight, we need to be prepared to fight alone.

The package also includes the questions my wife and I ask ourselves all too often. Why is he upset? Are we doing enough for him? Will his sisters eventually resent him? Are we hurting him by not putting him on ADHD drugs? What will middle school bring? High school? What happens when he transitions to adulthood? And the question that rarely gets spoken, but is never far from our minds: what will happen to him when we die?

I was talking to a new colleague a couple days ago and he was asking me about my research interests and my son. I’ve had many conversations like that, but he surprised me with a simple question. “Do you worry about him?” I guess I assumed that went without saying. At that moment I realized that no thoughts occupied more of my time than worrying about my son. My answer was a simple as his question. “Yes.”

There are many things we can’t control, but we can control where we direct that worry. We choose to look forward and enjoy all that this life affords us. We spend a great deal of time thinking about maximizing his potential and very little thinking about how he got or why he has this disorder. We could worry about the next meltdown, but it’s so much more rewarding to look forward to the next picture he draws or the tickling he loves and expects at bedtime or his newest dance or the way his smile and hug at the end of a tough day can make you forget all about it.

We do worry about his place in the world, but we are comforted by his place in our home and the constant love, pride and acceptance he receives from his sisters. True, there are moments when we mourn the loss of the life we imagined for him, but many more moments enjoying the life he actually has.

That’s the full package. We are a family of extremes with many more good days than bad. We are happy, scared, grateful and stressed, and an uncertain future allows us to appreciate today. We make sure we have more smiles than frowns and more laughs than tears. Darrin Khan’s spirit and creativity have taught us more about love and priorities than we ever imagined and we are a much better family because of him. No words necessary for that lesson.

I was recently reminded of a quote by the late, great Jim Valvano. “If you laugh, you think, and you cry, that’s a full day. That’s a heck of a day. You do that seven days a week, you’re going to have something special.” Darrin Khan has given us a lot of full days.

The post originally appeared on LinkedIn Pulse.

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group of special needs students smiling at school

To the Classmate Who Taunted a Fellow Student With Autism

There is this student at my school who is a part of the West Lakes Special Education Program. He’s a wonderful boy, and one of my closest friends. When you see him, you see kindness, love, compassion and creativity. You do not see his Autism.

students with special needs smiling

But, apparently, some kids at my school don’t see Robbie the way I do – the way everyone should.

One morning, just recently, I was walking to my first period class and there was a group of senior boys in front of me, presumably on their way to their first period as well. Robbie was down the hall behind all of us, walking to help take things to the office, when he started speaking.

His voice is loud, but not obnoxious. He’s a tall boy, but he’s not fearfully large. He’s a fantastically smart boy, and I don’t understand why people say the things they do…

Robbie was walking down the hall, saying, “I want my mommy to put a sticker in my book, not my grandma.” Then I heard something I will hardly soon forget. A student in front of me tried to be funny and imitated Robbie in a snarky voice. The friends that surrounded this guy started chuckling and smirking while making more rude comments.

This broke my heart.

Do these kids know that the words they speak can still be heard? Do they know that he hears and feels the emotions of what they say? It hurts me to know that people can be so ignorant. Just because they are not just like Robbie does not mean that Robbie is a bad kid, or deserves to be treated the way they treated him.

I’m younger than the senior boys in front of me, but I know that what they did was wrong, and they need to know that too. I wanted to speak up. I wanted to so bad, but every time I tried to move my lips, nothing but silence came out.

Finally, I piped up. “Do you know who you just made fun of? Do you find it funny? It’s not. I suggest that unless you’d like others doing that to you if you were different, that you don’t do it again.”

I was red with anger as I walked the rest of the way to my first period. I sat down at the desk, and I buried my face in my sweatshirt so nobody would see my tears of anger.

I knew that even if Robbie heard the comments, it would not have lowered his spirits. He’s so cheerful. He brings the biggest smile to my face when he comes into my classes to visit, or when I see him walking so proudly through the halls to his locker.

He truly has been able to put a smile on my face every day since I have known him. And that’s something that is amazing, as not many people can do it.

puzzle piece graph with text 'accept, understand, and love autism'

So, to the kid who had the audacity to pick on Robbie, think again and think hard. Do not do something so childish and rude again to my friend Robbie.

I think we can all learn from the ignorant boy in my school commons. The lesson is don’t speak without thinking, and don’t judge without knowing. Everyone is fighting their own battles, they don’t need you to fight their fire with your own.

Keep your rude comments to yourself, or better yet, don’t say them at all.

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 to [email protected]. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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