Is Different a Disability? Thoughts of a Troubled Mother

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Ever since Syd* was a newborn, I knew there was something different about her.

I don't mean different in the sense that she's more beautiful and intriguing and brilliant than other children--I'm her mom, so of course I already know that. But what I'm talking about here is the little red flag waving in the back of my mind with the word "Different" emblazoned across the front.

And I'm not talking about different in the sense that she doesn't act and talk and look like everyone else. I'm not into conformity. What I'm talking about is the Different that results in suffering, anxiety, and pain.

Frankly, I wish that red flag would go away. But every time I tear it down, there it is the next day, waving freely. Now that she's approaching her third birthday, it's getting to the point where I can no longer dismiss my worries as irrational thinking.

She's just shy.

She's an introvert like her mom and dad.

She's a sensitive person.

She'll grow out of it.

But are these things true, or am I in denial?

You can say that again
You can say that again | Source

Itty Bitty Challenges

It began soon after my little one first came home. I didn't get much sleep when Syd was a newborn. I don't mean the typical, get-up-eight-times-each-night-and-early-in-the-morning sleep deprivation. She cried constantly as soon as the clock struck 6PM, and the misery continued throughout the night.

One day when she was about two months old, I estimated that I slept a total of six hours over the previous three nights. Co-sleeping, breastfeeding, swaddling, Happiest Baby on the Block tips and god-awful womb noises--none of it worked.

During the day, Syd nursed constantly. She never napped. If I put her down for two minutes, she would scream. I learned to do everything with one hand while I held her to my breast with the other.

On a positive note, I had some pretty muscular arms for someone who never went to the gym.

Without the ability to self-soothe, she needed constant comforting. When I told the doctor about my concerns, she said that I should supplement with formula. No matter what I told her, and despite the fact that my baby was growing at a steady rate, blaming hunger and poor production (I had plenty of milk) was the easy answer. But nursing mothers know the difference between feeding and latching for comfort, and this kid needed comfort for most of the day.

It's amazing how many doctors fail to listen or respect a mother's intuition when it comes to her own child.

I was also told to let her fuss and cry, and that she would get over it on her own. That never happened. Instead, her frustration would escalate, and before I knew it, I had a baby who screamed inconsolably for hours.

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Say What?

Syd's first pediatrician visits didn't reveal any problems. The doctor said that she was the most alert newborn she'd ever seen. Every test showed that she was strong and healthy. Her sleep patterns improved. She reached most milestones ahead of time. She was sick one time in her life, with a fever that lasted several hours, then went away on its own.

She started babbling early, and we thought that she would be talking early as well. But today, just shy of her third birthday, Syd's language hasn't changed much over time. Looking at videos from her infancy, much of what she says sounds the same.

On top of that, she has never told me that she's hungry. She has never told me that she's tired or needs a drink or wants a toy, no matter how much I try to teach her to say these things.

But she can count to ten. And she can say and write letters of the alphabet.

The seeds of conversation aren't there. She knows her name, but rarely responds to it. She is often in her own world; the only way to reach her is by touch or the Dog Whisperer's attention-grabbing PSSST!

But at the same time, I say "bath time" and she runs to the bathroom. She knows "bubbye" at bedtime means that it's time for her to get into bed (night-night doesn't take).

Other moms I meet offer words of encouragement. Some say that their children didn't speak until they were well into toddler-hood. Others say that the brightest children they know didn't talk until they were older.

(I love older moms. They always encourage me with a grimace and a "get outta here!" when I express concerns about Syd's challenges. It's comforting. It has saved me from many a panic attack.)

Kids and Visitors and Store Clerks, Oh My!

Syd has never been too keen on playing with other children. Her cousin, who is five months older than she, is the only one she has ever played with on purpose.

When we go to the playground, she likes to watch the others play. But as soon as a child approaches her, she runs away or ignores him. I say, "Sorry, she's shy" or "She doesn't talk yet." The latter is always a mistake, because they invariably ask, "Why not?" To which I answer silently, "Your guess is as good as mine."

I don't want to apologize for her as if she's doing something wrong, but I also don't want others to feel hurt. So there's that.

At about a year and a half, Syd's anxiety started to set in when others came to visit. She'd cry for about five or 10 minutes, then relax and "talk" to our guests. Going over to others' homes for visits was fine--she loved to explore new surroundings.

Over time, the anxiety grew. Today, if you were to come over our house, she would cry almost the entire time. Often, she trembles as if we've allowed an axe murderer into the house. I can't put her down, even for a minute. Going out for visits are equally terrifying.

But if we met you at the beach, she'd be okay. She would go off on her own to throw stones and pick up shells, but she wouldn't freak out.

Unless, of course, you're an older man with gray hair. I feel so bad for the grandpa-types, especially the baggers at Publix. They hand her a balloon and feel so proud, only to be met with tears.

"Sorry! It's just a phase she's going through."

Maybe.

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Avert Your Eyes

People continually compliment Syd on her behavior. She sits in the shopping cart, happily chattering down the aisles. She never cries or screams or demands a thing.

For a time, she burst into tears if someone even looked at her. Cashiers had to avoid eye contact to sustain normalcy.

But now she is comfortable with eye contact and even offers a quick wave with a soft "hi" and "bye".

It doesn't sound like much, but it feels like a huge step.

Life is Hard!

I question myself every step of the way: what did I do to make life so challenging for my little girl? Did I eat the wrong foods when I was pregnant? Take the wrong vitamins? Did I try hard enough to help her sleep? Have I done something to inhibit her ability to communicate? Did I make the wrong decisions during my complicated delivery?

Of course, most people will say no. But that doesn't stop the waves of doubt that wash over me every time she grasps my leg and trembles when visitors arrive. Or when she cries with frustration because she can't tell me what she needs.

I don't doubt, however, that she's a happy little girl. She loves to snuggle and laugh and draw colorful pictures. She can teach herself how to play computer games faster than I can teach myself. She chases birds and studies bugs. She's fascinated with the way rocks make a splash when they enter the water. She creates deep conversations between her toys that no one else understands.

So when is different a red flag and when is it just . . . different? Who knows? A professional evaluation is in the near future, but I'm afraid it will remain a mystery.

* Syd is a pseudonym because I feel funny using her real name.

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Thank you for sharing your thoughts! 17 comments

billybuc profile image

billybuc 3 years ago from Olympia, WA

Well my dear, where to start.

I think a mother's intuition is incredibly important when it comes to your child. Unless you are a basket case yourself, which I doubt, then I say trust your intuition. I have very little faith in the medical community because they are all about pat answers without looking into a problem. It is too easy to say "she will grow out of it" and dismiss what could be a genuine problem.

On the other hand, I have a friend who's son did not talk until he was four, and today at six he is well-adjusted and you can't shut him up. LOL

I have no answers but I do know that your intuition is important and should not be minimized. I think a professional evaluation is very important. I don't know if there is anything wrong with that precious little one....there could be....and it could be she is just developing slowly...I don't know....but I do know that you are a loving parent who knows her child better than anyone else, so trust your instincts and be the advocate for your child that she deserves.

And oh, yes, you are brilliant....and loving....and all that other stuff. :)

love you,

bill


hawaiianodysseus profile image

hawaiianodysseus 3 years ago from Southeast Washington state

Liz, kudos to you for having the greatest love for your child and for having the courage to share this.

First of all, Bill's right. A mother is the first to know. Your intuition is that inner voice, an angel's whisper, whatever you want to call it. It may not be anything, but then again, if there is a need for professional examination and help, the sooner you seek it, the greater assurance "Syd" has of leading a healthy and unimpeded life.

I will be sending you a message via personal email. Be looking for it.

Thanks again for sharing, Liz! I am really grateful for the opportunity this HubPages community has to help lighten this burden of yours.

"Talk" to you soon. Aloha! Joe


Radcliff profile image

Radcliff 3 years ago from Hudson, FL Author

Ahhhh . . . my friends!

Bill, thank you for always having words of encouragement. I can always count on you for that. I will be getting her evaluated soon. Writing this hub gave me some accountability so that I will get it done. I had a bad experience with a pediatrician when she was younger, so it makes me nervous, but it needs to be done. I can only wait so long for these "phases" to pass. Love you back.

Thank you, Joe, for your support. I think you're absolutely right in everything you said here. I'm sending a reply to your thoughtful email, as well. Mahalo, my friend.


Vickiw 3 years ago

Hello Liz, I can really empathise with you, having an early childhood development background myself. Your daughter sounds really lovely, with some wonderful and clever attributes. The fact that you are concerned is a big help to her future progress - you wouldn't believe how many moms are in denial with things like this! I think one of the best signs so far is that her ability to make eye contact has improved. That is huge. It is also good that she is comfortable in at least some situations.

Please feel free to email if you think it would be helpful, even to talk more about it. My daughter is a highly regarded special needs consultant, who devises strategies for children who are 'different'. You didn't do anything wrong! And now you are doing everything right!


Radcliff profile image

Radcliff 3 years ago from Hudson, FL Author

Thank you so much, Vicki! Your comment is encouraging. Her "symptoms" change regularly--social situations that caused anxiety last month are fine today and vice versa, hand-flapping early in life but not anymore, sleep pattern improvements, etc.--and this makes it more challenging to find answers. I know that testing will be stressful for her since she doesn't like attention from anyone but her mom and dad, which is why I've put it off for so long. My main concerns are her inability to communicate or receive direction, as well as her anxiety around people she has seen many times. I took an online M-CHAT test, for whatever that's worth, and it said that she's high risk for autism or other developmental disorder.

Thank you for the invitation to email you--I'm sure I'll take you up on that one!


wayne barrett profile image

wayne barrett 3 years ago from Clearwater Florida

I would almost echo Bill's response; Never ignore those 'red flags' especially from a maternal standpoint. It is not abnormal to worry over your child; I would closely monitor her development and use any professional help that I felt was necessary.

On an encouraging note, I too have seen several cases of children who exhibited characteristics that were worrisome when the were young and then suddenly seem to grow out of it...sometimes almost overnight.

I hope all goes well. ( I recognize some of those backgrounds. Duneden...Crystal Beach?) I know many of them look very similar.


Radcliff profile image

Radcliff 3 years ago from Hudson, FL Author

Thank you, Wayne. It won't bother me if she has developmental issues--you just don't want your kids to struggle more than necessary in life. You know what I mean. Ignoring the red flags is no longer an option as she gets bigger. When she was younger, it was easier to assume that things would even out over time. But thank you for the encouraging words and well-wishes. Hearing that oftentimes kids really do grow out of these anxieties and communication problems helps, even if it's by way of therapy.

The top photo was taken at the Dunedin Marina at the end of the pier by Bon Apetite. The one of the beach is at the Dunedin Causeway. The last one was taken on the pier at Weaver Park on Bayshore.


rose-the planner profile image

rose-the planner 3 years ago from Toronto, Ontario-Canada

All I can say is that I admire you for being so candid and open about a situation that I am not sure most people would have the courage to discuss. You are such a wonderful mother for recognizing and acknowledging that perhaps your child may be a little different in the way she handles or reacts to certain situations. One thing is for certain, your little one is the luckiest child in the world for having such a loving, caring and understanding mother like you. Thank you for sharing your story with us! Take care and hugs to both you and your daughter. (Voted up)


Radcliff profile image

Radcliff 3 years ago from Hudson, FL Author

Thank you so much, Rose. What a sweet thing to say. I really appreciate it.

I will definitely write a follow-up in the near future!

Liz


JamiJay profile image

JamiJay 3 years ago from Somewhere amongst the trees in Vermont.

When I read this I was almost quite certain I was reading about my own daughter (with a few slight differences). I can tell you not to worry, we are raising beautiful, strong, intelligent, introverted women... they like to learn by themselves and observe, speech comes harder because they are deep in thought and busy with other things (besides language is a very difficult task to master). Every child is different and accomplishes milestones at different stages. Never give up and keep working with her, she will surprise you :)

Sending the best of wishes.

-Jami


Radcliff profile image

Radcliff 3 years ago from Hudson, FL Author

Jami, your words brought tears to my eyes. So thoughtful and insightful you are! I try my best to not worry, allowing her to grow at her own pace. Thank you so much for your comment. I appreciate it so much.


B. Leekley profile image

B. Leekley 3 years ago from Kalamazoo, Michigan, USA

Hope you find answers.

Some years ago I read an interesting book, HEARING EQUALS BEHAVIOR by Guy Berard. His notion was that some children, and adults, have oversensitivity to certain sounds, that this is a factor in a variety of syndromes, such as unusual aversion behaviors, Auditory Processing Disorder, autism, depression, dyslexia, Speech and Language Delay, etc., and that the symptoms can be comfortably reduced through "auditory integration training". Whether this notion can be scientifically verified remains an open question, but there are auditory integration training practitioners in many states of the USA and in other countries. To learn more, ask Google. The AIT Institute website includes success stories.

I don't know if ordinary hearing tests would reveal such oversensitivity to sounds of a certain pitch or other quality or if that is tested using special equipment.

Hearing sensitivity is just one of lots of factors to consider. Maybe a Google search on child development issues OR problems would lead to more. Or maybe there is no permanent problem and your child will soon be talkative and sociable. I hope the professional evaluation helps.


Radcliff profile image

Radcliff 3 years ago from Hudson, FL Author

Wow, wow, wow. First of all, thank you for sharing that information. I will look that book up as soon as I get done here. It's very interesting that you mention this issue because S has been sensitive to certain sounds since she was an infant. For example, she had a toy that played a tune that would send her into hysterics. Also, the song "There's Always Tomorrow" on the old Rudolph the Red Nosed Reindeer movie would bring on the waterworks (although it no longer has any effect). Hmmmm . . . I am in the process of working with some specialists, but thankfully she has come a LONG way since the writing of this hub. I'm much more optimistic than I was only several months ago.

Thank you so much for your comment and the helpful information, B! I appreciate it.


btrbell profile image

btrbell 2 years ago from Mesa, AZ

Different is not a disability! Different is...different! I have a child who "marches to the beat of a different drummer"

It is the most difficult because we only want the best for our children. We want them to be happy and comfortable in this world. You are doing great with her. She is very lucky to have you for a mother.

I had my son evaluated and he joined a 0-3 and a 3-5 program. He received several different therapies, including speech, physical, and occupational. Not only did he flourish, but I got the support I was lacking, which laid so many of my fears to rest.

Good luck, keep doing what you are doing with your beautiful girl!


Radcliff profile image

Radcliff 2 years ago from Hudson, FL Author

Thank you, Randi! I'm happy to report that the anxiety has passed. She is still a shy child, but doesn't cry and "freak out" whenever she gets any attention. My family and friends still comment on how much she's changed over the past year. But like your child, she does march to the beat of a different drummer. I'm ok with that. Social conventions be damned! Hahah! I'm glad to hear you found programs to help your child. They are still a possibility, but at least I know she won't suffer emotional pain getting involved in something like that. Thanks for sharing!


btrbell profile image

btrbell 2 years ago from Mesa, AZ

So happy to hear this! It was only after I commented that I saw how long ago you wrote this. So much can happen in a short time when they are this young! Just a little FYI, my son, Ben, recently graduated from college, has just started his first "real" job and is doing great. He has learned how to align himself with this world!


Radcliff profile image

Radcliff 2 years ago from Hudson, FL Author

That's so awesome, Randi! Yes, they change quickly. They go through so many different phases, it's tough to know what to worry about and what will pass. Thanks again!

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