brothers smiling with bug hats on

What the Person Who Commented on My Son's Lack of Speech Didn't Know

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brothers smiling with bug hats on
My boys

I’m sure you didn’t know who I was, sitting in front of you watching my two littlest guys. They were singing songs about bugs for an end of the year kindergarten performance.

I’m sure you didn’t know that was my youngest son on the end, smiling as he played with his pipe cleaner “tentacles.”

I’m sure you didn’t know I heard your comment when you said, “That boy on the end isn’t even singing!”

I’m sure you didn’t know that while I proudly watched both my boys, the comment stung.

I’m sure you didn’t know that he is on the autism spectrum and is predominantly nonverbal due to speech apraxia, even though his aide sat next to him.

I’m sure you didn’t know how many hours my little guy has spent in speech to be able to vocalize the words he does today. (Two to three days a week, an hour at a time for the past three and a half years.)

I’m sure you didn’t know how many nights all six kids and myself piled on my bed practicing these songs with him.

I’m sure you didn’t know how he would hand us the papers with the lyrics on them and smile as we sang them with/to him.

I’m sure you didn’t know how we worried if he would even be able to stand with his classmates and be a part of the performance, since he had melted down during practices.

I’m sure you didn’t know my heart was exploding with pride that day to see both my little guys on that stage, “singing” their bug songs in their own unique way.

I’m sure you didn’t know that while that boy on the end may not have looked to you as if he was singing, in my eyes, he was making beautiful music.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? Check out our Submit a Story page for more about our submission guidelines.

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These Words From a Genetic Counselor Changed the Way I See My Son's Apraxia Diagnosis

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young boy holding stuffed frog to his chest
Allison’s son.

When Reed was first diagnosed with hypotonia and apraxia, some of the most healing words spoken to me were from a stranger — a genetic counselor tasked with talking to us over the phone about the life-altering condition Reed had. She told me the story I didn’t know yet: Reed’s diagnosis didn’t define him; it simply explained some things about him. Those words gave me a different story to tell.

And that story became my mantra every time my heart tried to throw up confusion and guilt and sadness and anger — all those grief-torn emotions. Doesn’t define him. Just explains some things about him. Doesn’t define. Just explains. Not defining. Just illuminating.

But five years has sanded off the ragged splintering grief and given me a new story.

His diagnosis does define him, just in a way that, at first, I couldn’t understand without waves of grief crashing down. Now I can acknowledge straight-forward that there’s not one facet of his existence those three extra chromosomes don’t touch. I don’t know — and never will — a Reed without hypotonia and apraxia. The way he walks, the way he talks, the way he holds his head cocked to the left, the way his frustration sparks fierce and just as quickly dissipates, the way his anxiety can overwhelm him — all of those are the sum of his multiplied genes, the most prominent qualities others often notice about him first. His genetic disorder is one of the most profound influencing circumstances in his life, defining much of what he does.

But here’s where the story takes a new direction for me: There’s more to know than what defines him. His diagnosis can’t account for how he loves to laugh at his own wicked sense of humor. How he is gentle and sweet and loves holding hands and cuddling up on the couch. How he adores dogs. How he could eat bread all. day. long. How he loves to run. How he observes and he asks questions about everything. How he’s a genius at hidden picture puzzles. How he loves to slide, throw rocks, blow bubbles, write the letter “e” and play hide and seek. And how much he loves his baby sister.

With Reed, we live both within the constraints of his disorder and yet beyond those borders, because there’s so much more to know about him than the existence of those three extra chromosomes. I’ll always be thankful for what that genetic counselor originally told me because her words probably saved my life a million times that first year. But sometimes as our grief changes, we need a new story — one that walks us through the present season with new strength and new joy.

Follow Allison’s journey on Writing Is Cheaper Than Therapy.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability, disease or mental illness. 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 Submit a Story page for more about our submission guidelines.

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A Mother's Thoughts When Her Child Doesn't Speak

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When your child has delays in language, you may experience many emotions and thoughts as a mother. When my daughter was born with Down syndrome, I assumed she would have delayed language, as children with Down syndrome commonly begin speaking at a later age. However, that later age came and went with no words.

Today at age 10, my daughter says about 20 words clearly. She communicates mostly with sign language and her speech generating communication device. She is approximating more words than ever in the past year as she tries to make the vowel sounds in words while leaving off the consonant sounds.

I’ve had 10 years raising a child who was classified as either “nonverbal” or “minimally verbal.” As a speech-language pathologist working with toddlers, I am in constant contact with mothers who are concerned about their child’s talking. With these experiences in mind, here are common thoughts a mother has as she waits for her child to speak.

1. “My child isn’t talking, but it’s still early.” This is the time when the mother starts to notice some delays with her child’s language and speech. These are the early concerns. Some mothers at this point might seek help and have their child’s development evaluated. Others might brush off these concerns and give the child more time.

When Jaycee didn’t speak early on, I tried to find other reasons to be hopeful. When she learned the sign for “more,” I took comfort in the fact that she could learn language if she wasn’t saying it.

2. “My child still isn’t talking. She should be talking by now. Why isn’t she talking?” After some time, this stage of thought starts and lasts months or years. This is when a mother begins to question things she sees or hears (or doesn’t see and hear). By this time, the mother has most likely evaluated her child’s language and has started some type of intervention. The mother is starting to get worried as she sees her child’s peers saying much more than her child. The delays are becoming obvious to the mother and to others. This causes the mother stress and anxiety, as her child’s future may not seem to be taking a “perfect” path.

When Jaycee was 2.5 years old and only saying a couple of words, I had these thoughts often. I was stressed and worried about her. I threw myself into helping her at home working with her on sign language, oral-motor exercises and verbal speech drills. I was convinced I could do something to change the situation.

3. “A new sound/word! I heard it! It’s coming!” There will be a point when the child might say something new. Perhaps it’s a new sound or noise. Perhaps, it is a new word. It will be exciting because you have been waiting for this moment. It will give you hope. It is the positive moment in your child’s life that you have been waiting for. It will be met with celebration.

From here, mothers tend to take two routes. For some mothers, their child will go on to speak. Their worries will slowly die down as their child begins saying more and the delays get smaller. For others like myself, the new word or sound stays just one word or sound. This victory feels short-lived. Those of us who continue waiting for a significant amount of words will continue on this thought process.

I remember the time Jaycee said, “Mama.” I had waited for that word. It was exciting! Not only was it a new word but it was also the first time she had made a /m/ sound. I had reason to believe Jaycee would now start saying more words and sounds. More words did come but months between them. Nothing happened quickly.

4. “She’s not really talking yet. Something is seriously wrong.” By this stage, a minority of mothers still find themselves with a child with minimal or no words in their spoken vocabulary, well past the age of when these language milestones should occur. At this point, the mother realizes something is different. There has to be an underlying reason why the child isn’t speaking. Now, the mother might seek out a second opinion, ask for more speech therapy, ask for a new treatment approach or seriously consider alternative methods of communication. Tough decisions may have to be made, and the mother may find herself stressed at times over this thought.

When Jaycee was 5 years old and barely saying anything, I sought out a second opinion from someone with more expertise in this area. I was done waiting for words to come. It turns out my concerns were valid, as Jaycee was diagnosed by the second opinion with severe childhood apraxia of speech, which was no surprise to me. It was then that we started the process to obtain Jaycee’s communication device.

5. “My child may never be verbal.” Now years into a journey, a mother has come to the realization that her child may never talk at all or very little. This is a painful time for the mother. While this thought has always been in her head, the mother is now fully accepting this idea and coming to terms with what this may mean. This can affect the child’s future educational and vocational options. This may also affect the child’s ability to live independently. The mother does keep hope of their child saying new words, but some realistic expectations are now the focus.

For me, I had to sit with this thought for some time to fully comprehend it. Even though this thought had caused me great fear years prior, it was now evident that it had validity. What did it mean for me and Jaycee if she never really talked? The scenarios played out in my head for months. I learned that I wasn’t giving up on Jaycee talking if I accepted the fact that she never become very verbal.

6. “My child isn’t talking much, but any communication is good.” The thoughts in this stage with the mother revolve around thankfulness. Her child may not talk, so the mother is thankful for the things she can do. The child may be using sign language, pictures, communication devices or simple gestures to communicate. For the things the child can do, the mother is thankful. After years of hoping and dealing with emotions related to talking, the mother has reached a new level in her thinking. She is not focused on what the child is not doing but on what the child can communicate. When friends or family ask about why the child isn’t speaking, the mother can talk about it plainly and without emotion.

For me, I went through this stage with Jaycee when she was about 8 years old. I didn’t feel the need to compare her to other children anymore. I didn’t feel guilty for not working on her language and speech at home. I started fully encouraging a total communication approach (sign language, spoken words, gestures, communication device). I was grateful that Jaycee had ways to communicate with me. Words didn’t seem as important as communication in general.

7. “My child will probably not be able to have a conversation with me, but that’s fine.” After years of hard work, questions, fears and opinions, a mother has now come to the last stage. As she has watched her child grow older, the mother has truly come to terms with the fact that her child may never talk enough to hold a long conversation. This now seems like a fact and not a loss. Her child is still her child with or without speech. They have found ways to communicate and bond that surpass words.

For me, this has been the last stage. As Jaycee has developed a small vocabulary, but she may never speak in sentences or hold a conversation with me using words. But, it’s OK. I’m not sad about it. We have our inside jokes, special sayings and ways to communicate. Jaycee says what she can say, and that’s fine.

If you are a mom worried about your child not talking, hang in there. It’s not easy. But, I can tell you that your perspective will change even if your child’s verbal skills do not. No matter where you are on this thought process, just know you are not alone.

Follow this journey on A Special Purposed Life.

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 [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When My 4-Year-Old Son With Apraxia Would Say, 'I Hate Dad'

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“I hate Dad!”

I heard it over and over again from my 4-year-old son, Ben, who has childhood apraxia of speech (CAS) and developmental delays. It came out of nowhere and struck us really hard.

Ben has always preferred me (I’m his mom, of course!), but suddenly, his preference skyrocketed. I was the only one who could put him to sleep. The only one who could give him a bath. The only one who could take him to soccer. The only one who could feed him dinner. He wouldn’t go anywhere or do anything without Mom. He wouldn’t even do highly desirable things with Dad, like going out for ice cream or a trip to the park. And his demands for Mommy weren’t quiet or polite. They were big and loud and angry and forceful.

Because of his medical and developmental issues, we have a developmental pediatrician in our arsenal of special needs resources. This particular doctor was helpful in telling us that some kids like Ben can usually be more intense. I assumed other behaviors, like extreme parental attachment, might be more intense as well. I read books. I scoured the internet. I guess I was looking for consolation that it was nothing serious.

Even though I found “nothing serious” about this issue, there were serious effects on our whole family. I was drained. I had very little to give to the rest of my family. My husband felt neglected and sad. My daughter felt left out and missed her mom. The constant tension resonated in our home, and we were all on edge.

Ben has worked hard in speech therapy for three years. We have appreciated and loved every single word he worked so hard to get out of his mouth. But to hear such a negative word like “hate” as such an angry sentiment was truly heartbreaking.

Friends and family kept saying, “It’s just a phase.” That comment trivialized our real challenges for four-plus months. These “phases” can look different with our son. This phase was disconcerting. Ben couldn’t verbalize his feelings. And if you knew my partner, you would know what a fun and caring person he is and how any hatred towards him is unwarranted.

Maybe you’re thinking I shouldn’t have given in. I should have insisted that Dad do the dinners and baths and bedtime. But what I have learned painfully over time is that this kind of forceful parenting just doesn’t work with my son. There are usually decent reasons why he does what he does; he just can’t tell me because of his apraxia. I wanted to make our house as peaceful as possible, and for months, that meant I did it all.

As you might have guessed, this story has a happy ending. Two things solved this issue over time:

1. My husband: He stuck it out. He stepped into the background for a while. He kept testing the waters and tried to find things “the boys” could do together. Usually, he encountered a lot of resistance. Then he would back off and try again later. He kept at it over many months despite a lot of frustration and fatigue. I’m so grateful he didn’t give up on Ben!

2. A special intervention from one of his speech therapists: I mentioned this “hate” problem in an IEP meeting, and she suggested using a social story about Dad. She noticed Ben did well with social stories in the past. She wrote a story about how mom has to leave sometimes, but she always comes back. She even included pictures of Dad and Ben together and wrote about how they have fun and go places together and like spending time together at home. Ben read this story with me for two weeks and slowly we heard the dreaded hate word less and less. One day a few weeks later, I turned to my husband and asked, “Has he said the H-word lately?” He looked back at me incredulously, “No!” We realized our efforts finally worked.

We have gone a few months without hearing “I hate Dad.” I think the boys’ relationship has gotten stronger.

Ben knows Dad isn’t going anywhere.

Mom is always coming back.

And we are a cohesive unit again.

We also recognize that parenting our son is full of intense peaks and valleys and have come to appreciate those “wins” so much more.

Ann Weiss’s husband and son

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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 Submit a Story page for more about our submission guidelines.

 

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To the Wendy's Cashier Who Gave My Son Lunch With a Side of Hope

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Dear Donna, a cashier at Wendy’s:

My 10-year-old and I stopped in for lunch today on your shift. I could see after you asked him how he was doing today that his jumbled answer might have caught you off guard. You shifted your eyes to me and then back to him as he continued… something that happens all the time in our world. So I looked down at him, and as his 24/7 speech and language coach I said, “You can say, ‘I’m good!’”

But then you caught me off guard. Instead of looking to me for his order, you asked him. He answered you. You leaned in and said, “I think you said you want a cup of water… is that right?” He nodded. “Aren’t you getting anything to eat?! What else?” After he excitedly spit out a string of jargon you asked him to slow down and try again. So he did. “Fries,” he said unclearly. “What size?” you asked. “Medium.” “Great… anything else?” You looked in my direction. I shook my head as my son clearly said “Nope!”

What you didn’t know as we held up the line is that my son has childhood apraxia of speech, but the name of his disorder didn’t matter to you… what mattered to you was making sure you got his order right. You didn’t “let” him be an equal patron at your restaurant… he just was. You let him be his own expert. You presumed competence. Not your version of competence — his. You allowed him the dignity of time. You asked him his name to put on the screen for his order just like everyone else and checked out to see if you said it right and even asked him if he knew how to spell it for you. So he did. Through this act I’m certain you’re not expecting a newspaper article or local talk show segment… you weren’t trying to be noticed or given kudos or to be called a hero because you took a moment and tried a little harder. You wanted a 10-year-old at your counter to order lunch, just like any other 10-year-old might on a Friday afternoon.

son at soda self serve

Advocacy and inclusion are tricky things. When it comes from a place of equality, empathy and understanding it is a wonderful thing… when it lacks authenticity it can still have its place but can also be humiliating and damaging to an already fledgling movement. By “letting” my child be prom king or shoot the last basket in the last 10 minutes in the last game of the season, by being so kind as to “be his friend,” well-meaning people are inadvertently continuing to marginalize him. No one has assumed he was worthy of the crown on his own, able to make that basket without help or that maybe he makes one heck of an awesome friend and that perhaps he is the kind one.

So you, Donna, your authentic advocacy is the kind that will change the way we as a society approach disability. Thank you for lunch with a side of hope.

Sincerely,

His mom

Follow this journey on Running Through Water.

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7 Things I Wish My Friends Knew About Raising a Child With Special Needs

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Parenting is hard work for all of us. Our journey may seem different compared to yours, but isn’t everyone’s? We all share a common goal: to raise happy, kind, successful kids. So why do I feel a disconnect between us?

Our get-togethers have become brief, awkward exchanges. The relationship we’ve cultivated over the years seems to be disappearing before my very eyes.

So to you, my friends, here are a few things I wish you knew about raising a child with special needs.

1. My child’s apraxia is not a taboo subject. It’s OK to ask me questions about it. I don’t want you to feel uncomfortable talking about it with me. In fact, I want you to talk about it with me. I want to be able to share this part of my life with you.

young boy at playground

2. Sometimes I just need to vent about it. It’s OK if you don’t know what to say to me. It’s OK if you don’t understand what I’m going through. You’re my friend; I just need you to listen. Be there for me and listen.

3. I’m not better suited to do this than you are. I’m not more patient or understanding than you. I do this because I have to; it isn’t a choice I made. I love my child unconditionally, like you do, and if our roles were reversed, you’d be doing the same things as me. You would not love your child any less. Please stop telling me I was singled out by God. I wasn’t.

4. I am jealous of how “normal” your life is. I know it’s not fair to you; you have your own struggle. It just feels like your struggles are easier to deal with, even if they don’t feel that way to you. I’m just envious of the idea of simplicity.

5. I do not view my son’s disability as a gift — I view my son as a gift. I believe his disability is not who he is. Given the choice, I would not choose for my child to struggle. I would choose a much easier life for him, one without pain or heartbreak.

6. I worry all the time. It consumes me. Am I doing enough? Is he getting the best treatment? I worry about school and him making friends. I worry about trying to find another play date for this weekend so he doesn’t have to spend it playing alone again. So it’s not that I don’t care about what’s going on in your life or that I don’t feel like it’s as important. It’s just hard for me to shift my focus sometimes. It’s hard for me not to worry about everything all the time.

7. I still care about you. Even though it feels like I’m always canceling our girls’ night, I truly value our friendship. It’s just hard for me to find time to go out and sometimes. I’m just too mentally exhausted. Please continue to invite me out, even if it’s just to make me feel included.

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