When People Think Your Child’s Speech Delay Is ‘No Big Deal’

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Some people seem to think a speech and language delay is no big deal, and the child in question will get there in the end. Admittedly, I used to think the same until it was my child. Now I know better. A speech and language delay can be heartbreaking for the parents and the child.

There are many different language disorders, so I can’t speak for all children or their parents because all children will be affected differently, but I can tell you how it affects my child as well as myself.

We have good and bad days. On the good days, my 3-year-old son, Harry, will use words and gestures to let you know what he wants. If he can’t for any reason, I’m able to remain calm, sympathetic and understanding.

But when Harry is having a bad day, he throws the mother of all tantrums multiple times a day. They seem to go on for hours on end. He gets so frustrated that he bangs his head on the hard floor over and over again. Most of the time, I have no idea what the tantrums are about, and he isn’t able tell me. I’m ashamed to admit that when I’m having a bad day, all calm, understanding and sympathy goes completely out the window. So on the really, really bad days, you have one screaming 3-year-old and one screaming 34-year-old acting like a 3-year-old.

Also on the bad days (for reasons unknown to me), Harry may refuse to use the words he has learned and mumbles or makes whiney noises at me, which leaves me feeling frustrated, annoyed and then guilty. Guilty for feeling frustrated and annoyed.

His parrot-like speech and out-of-context sentences he uses over and over can grate on my nerves. And then I feel guilty and ungrateful because I know there are moms out there with completely nonverbal children who would give their right arm to hear them say anything, even if it meant hearing them repeat the same thing again and again.

Sometimes I feel sad for my son who can’t always communicate like a typical 3-year-old can. And sometimes I feel sad for me. This isn’t how I imagined our lives would be. You certainly don’t spend your pregnancy dreaming about visits to the pediatrician and attending speech and language appointments. You don’t expect it will be your child who has additional needs.

A speech and language delay can sometimes affect a child’s overall development because they can’t process what you are saying to them. Sometimes in Harry’s case, it all becomes a bit too much to take in, and he ends up switching off completely.

You hear speech delay and just think that one day soon they will just suddenly start talking. For some children that’s true, but for others, it’s not that simple.

Imagine not being able to tell someone what you want and not being able to get it for yourself, either. Imagine being in pain but not being able to say what hurts so someone can help you to feel better. Imagine feeling scared or angry or sad and not being able to talk through your worries with the people you love. Imagine being hungry or thirsty but not being able to ask for food or drink.

Although Harry can now say “drink,” “dinner” and “snack,” sometimes he prefers to just throw an almighty tantrum instead, and I’m supposed to guess what he wants.

There are the toddler groups we attend where he gets so hyper because he doesn’t know how to communicate properly with the other children. He gets rough and starts pushing them to get their attention in the only way he knows how. He thinks it’s a game. I then have to tell him off because pushing is, of course, completely unacceptable (speech delay or not). Then everyone looks at you both in a way that says, “He’s the naughty child.” Except he’s not. He’s just misunderstood.

I can’t reason with him to go to sleep on his own at night with the promise of a new toy or an outing of his choice if he’s good. I can’t tell him can’t watch the “Peppa Pig” TV show for a week if he’s not. But he only picks out the words that interest him. So when he only hears “Peppa Pig,” he thinks I’m putting it on for him when I actually mean quite the opposite.

We have to simplify everything we say to him with just a few words, and he can only follow one simple direction at a time. I’m not gonna lie. It’s exhausting.

While other children his age are just starting to draw stick people and shapes, he is still scribbling in the same way as his 18-month-old sister.

Some days, I don’t feel like I have a 3-year-old and an 18-month-old. Some days, it feels more like I have 18-month-old twins, especially when they’re both screaming at me and I can’t work out what they want.

Unless you go through something like this yourself, you have no idea what an emotional rollercoaster it can be. There are really, really hard days, but every new word or sentence is cause for a celebration. Just one tiny new word can put a smile on your face for days.

Having a speech-delayed child can mean having more bad days than good. It’s so much harder than I ever thought it would be. Harry is making definitely making progress, but not at the rate that I’d hoped.

So the next time I tell you my son has a speech delay, please don’t tell me it’s no big deal. It’s a big deal for my son and me. It affects our lives in more ways than one every single day.

Janine Woods.2-001

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To the New Special Needs Parents Who’ve Heard Those Marriage ‘Facts’

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To the newly the newly diagnosed family,

It’s true what “they” say: having a child with special needs does indeed affect marriages.

I haven’t been married a long time. It’s been three years and two days as I write this, to be exact. But my husband, D, and I have been a couple for almost 12 years. That is a long time.

In those years, our relationship has been affected by our son Ethan’s diagnosis.

We had just about got our heads around Ethan having a hearing impairment, sensory processing disorder, autism and global developmental delay when we were hit with the huge one in 2008: Hunter syndromea rare genetic syndrome that is terminal and has no cure. We were told to go home and love our son, for we wouldn’t have him for long.

To say that didn’t affect our relationship would be an absolute lie.

We both handled Ethan’s diagnosis quite differently back then. D arranged a huge fundraiser hoping to raise money to help fund research.

I cried.

D spoke to people about Ethan’s condition while asking for sponsorship. He spent evenings emailing local businesses and other businesses all over Ireland. Those who didn’t respond to his emails had a personal visit 24 hours later from my husband, regardless if the business was local or not.

He researched what was currently being studied in the medical world of MPS. (Hunter syndrome is also known in the medical world as MPS II.) He contacted a specialist in England and spoke to him for hours about Ethan. He arranged an appointment — once that doctor made the mistake of telling him he holidays in Ireland (where we live).

I cried.

He picked up every bit of “lingo” used by the medical profession, so when we met the metabolic doctor in Dublin, my husband could understand all those terms. It made me feel like they were speaking in a foreign tongue, one I never wanted to learn. Time would insist I learn.

He filled out the forms — the medical ones, the financial ones, the ones that “promised” services that would help Ethan. He dealt with the school, the GP, the “strangers,” the media around his fundraiser, the specialists, the therapists… all while I cried.

I was no help. My heart was literally broken. I had never felt pain like that before. I didn’t think your heart could actually break. I know it can now.

Everything in those early diagnosis days fell onto D’s lap. I was a mess.

We even had to fight for the drug that would slow down the progression of Ethan’s syndrome. It wasn’t a cure, but it was a tiny glimmer of hope. And boy, we needed hope.

D sat me down before we made a trip back up to the National Children’s Hospital in Dublin where Ethan would receive his first ever enzyme replacement therapy. I was a bundle of nerves as I sat with D.

“Ger, we all need you. You have spent months crying. We need you now to put that hurt and anger into the fight for Ethan. I can’t do it alone. I need you. I need you to walk with me — Ethan needs us both.”

I nodded, knowing he was right.

“We are a team, remember? I bring home the big bucks and you spend them! Where has the bossy woman gone, the one who would not trust me to go grocery shopping alone?!” He laughed. It was true, I ran the house, the kids and him before Ethan’s diagnosis. I handled the specialists, the doctors, the schools… pretty much all of it.

“That was easier. I don’t know how to talk to these kind of specialists. They told me he is dying. What else is there to say?” I pushed back the tears.

“Ethan is alive, Ger. Cry, it’s OK to cry. Just remember to smile, too. We can do this, but we must be a team.” I heard his voice wobble. I had heard him crying the night before, I had heard him crying the day of the fundraiser, I had heard him cry the weeks leading up to this appointment… I had never seen him cry until then. In that moment, I knew it was my turn to be the strong one.

I took his hand, rubbed it and faced the trip to Dublin.

Our relationship changed. We no longer could expect one of us to make all the appointments alone; it takes two to handle Ethan. We talk about our feelings more openly than we ever did before. There’s a comfort knowing it’s not just you who cries.

We laugh at the things most parents would be mortified over. For a child who is losing the skill of speaking, Ethan sure knows how to communicate. If a stranger doesn’t understand him, he has no problem losing his patience and telling them to fug off.

We argue. We can snipe at each other, especially if Ethan has had a bad report telling us he has declined or his behavior in school has caused huge problems again. But money doesn’t actually cause us to argue. We used to like most couples, but now we simply have it or don’t. Perspective is a beautiful thing.

We will try anything once. Ethan has shown us life is too short.

Ethan and his diagnosis have brought D and I closer together. Despite what is “widely” known, I believe we’ve become more of a team than most couples. We take turns at being strong, and when we are strong together, we feel like we can accomplish anything.

We need each other to get through what is facing us — and there is nothing more comforting than knowing you are not alone in a battle against an incurable condition.

So if you’re a newly diagnosed family (because a diagnosis affects everyone in the family, not just the person with the diagnosis)don’t listen to the “facts” regarding your marriage or partnership. I am a special need parent with a wonderful husband who has stood by my side each step of this journey. Yes, we’ve argued. Yes, we’ve gotten angry. But he’s the only person in the whole world who feels what I feel.

And that feels like home.

Follow this journey on It’s Me Ethan.

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 [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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5 Ways to Support Veteran Mental Health This Veterans Day

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This Veterans Day, it’s time we face the scary reality of those who’ve served — 30 percent of soldiers develop mental problems within 3 to 4 months of returning home, and of the 1.7 million veterans who served in Iraq and Afghanistan, 20 percent experience post-traumatic stress disorder (PTSD) or major depression.

Honor our veterans by supporting their mental health. Here are some things you can do.

1. Know the warning signs of suicide. 

Half of Iraq and Afghanistan war veterans say they know a fellow service member who attempted or died by suicide. But suicide is preventable, and knowing the signs can help. According the the Veterans Crisis Line, warning signs of suicide include feeling anxious or agitated, trouble sleeping, neglecting personal welfare, losing interests in hobbies, frequent and dramatic mood changes and acting recklessly.

2. Learn about potential triggers.

For veterans who experience PTSD, everyday events can be triggers. For example, violence on television, being in crowds, seeing an accident, or hearing a car backfire can bring back memories of a traumatic event. According to the National Alliance on Mental Illness, it can also be helpful to notify local veterans groups before events that include fireworks.

3. If you notice a veteran is struggling, suggest some resources. 

Restored Warriors is a great online resource to help veterans help themselves heal what they call the “invisible wounds of war.” The site includes a self-assessment test for veterans, training exercises for managing stress and relationships and resources for getting professional help.

 

4. Make the connection, and tell veterans it’s OK to seek help.  

Make the Connection is an online source that has tools for reaching out to veterans. It provides a collection of sharable graphics and stories letting veterans know it’s OK to seek help. You can post veterans’ messages instantly on social media, and browse their collection of videos to share with someone who might need a story of hope.

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5. Know what to do in a crisis.

The Veterans Crisis Line is 1-800-273-8255. After dialing, press 1. You can also text 838255 to receive confidential support 24 hours a day. This resource is for veterans, their families and their friends.

Related: Without Saying Without Saying a Word, Military Wife Spreads Heartbreaking Message

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To the Impatient Woman Standing Behind My Child With Special Needs and Me

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I used to be like you. I used to be impatient. I used to be in a hurry. But the little boy I was in line for changed all of that for me.

When you impatiently moved into our personal space to let your hurried presence be felt, please know we sure felt it. When you realized we were there to handle a large order, you said loudly, “I sure picked the wrong line,” as you walked away. You gave me the nastiest look you could possibly muster. I felt myself get defensive as the tears stung the back of my eyes and threatened to appear. I had to remind myself I used to be just like you. (And remind myself I was slightly more emotional today due to the prolonged worry over my baby.)

I realized you couldn’t possibly know these things about my son and me.

You couldn’t possibly know just last week we celebrated his miracle anniversary, the date he was discharged from hospice care.

You couldn’t know waiting is my job now.

You couldn’t know that just today alone I spent a lot of time texting, emailing and speaking to multiple people on his care team to coordinate his extensive needs.

You couldn’t know we went to multiple specialist appointments, including palliative care. Palliative care doesn’t mean end-of-life care like some may think, but it does mean he has a lifelong, incurable and complex condition.

You also couldn’t know one of the reasons it took us longer is because I needed pharmaceutical counseling for yet another new medicine, making it a grand total of 32 doses of medicine every day.

You couldn’t know his entire family had to learn CPR hoping we never need to use it for him, or that we go everywhere with a defibrillator for preventative measures.

How could you know we’re regulars at the local children’s hospital? That most faces we see in the hospital’s hallways are as familiar to us as your neighbors are to you?

You couldn’t possibly know that.

I’m grateful our pharmacy team gives us all the time we need to make sure he gets the best care possible. They play a large role in our lives and do a wonderful job. But I do realize filling his pharmaceutical needs can be time-consuming. I’m sure you can’t imagine what it takes to accurately draw up 32 doses worth of medicine each day. Until he came into my life, I know I couldn’t possibly fathom this.

I’m really not upset with you, dear lady.

While I hope tragedy never impacts your life, I do hope someone inspires you to change the way someone changed me.

I used to live in the fast-paced world, but this little boy of mine forced me to slow down.

Things take time. Waiting rooms and doctors take time. Nail-biting test results take time. Getting medicine filled and ordered takes time. Waiting on him to reach milestones his peers reached a long time ago takes extra time.

You couldn’t know how lucky we feel that he’s even alive.

You don’t how lucky we feel to even know the name of our son’s disorder: Barth syndrome.

How could you know just by looking at him that he still struggles to run and jump? Or by listening to him that he couldn’t talk before he was 4 years old?

You could never  know doing things people take for granted, like enjoying the snow, caused him to have a stroke, and we had to wait some more. We had to wait for him to regain skills that took him so long to reach already. Walking, talking…doing things we take so much for granted took a lot of time for him to achieve (all over again).

His heart may need to be treated with care, but it’s so full of might. You just could never know because he won’t let his challenges stop him. He may be slow, but he never stops.

One thing is for certain — I don’t mind the waiting anymore. It’s what I do.

Things I used to regard as the “little things” are the most important and precious things in life to me now. I believe he and God has shown me strength, courage and patience I never thought I had. And you know what? He is so worth it.

I’m so excited to see what his future holds. I will take all the time he needs.

Kristi Pena.1-001

Follow this journey on Facebook at Crusade4Christopher.

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To the Parents of an Older Child With Special Needs

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I’ve barely even begun this journey, and I’m exhausted. Seven months, three weeks and six days ago, I was oblivious to the road ahead. Our fourth child had a seizure at just 4 weeks and 3 days. Shortly after, we learned the cause was due to a genetic mutation on her CDKL5 gene. After a quick Google search that day, I learned my beautiful baby would most likely not walk, talk or feed herself. According to the International Foundation for CDKL5 Research, most children with CDKL5 are in wheelchairs and “dependent on others for everything.” My husband and I were left feeling devastated and at rock bottom. 

There have been many days since that I’ve wished to throw in the towel and give up.  Instead, I give myself a proverbial smack, wipe away the tears, suck it up and just keep on going. More often than not, I go through the day as if I’m an empty shell, simply going through the motions but not present. There have been a couple days where I do not know how I functioned at all. I feel so guilty because I’m sure my other children can tell. I have conversations in my head about what they will say about me when they’re older, that I was always preoccupied or appearing sad or frustrated all of the time. 

It’s often during these more challenging days and times when I think of you most.

I think of how many times over the years you’ve had to pick yourself off the floor on days when it was just plain hard. I think of all the times you must have wanted to say, “I’ve had enough.” I think of all the challenges you might’ve endured, and I’m sure there are some I don’t even know exist.  It all makes me wonder, how have you done it?  How do you do it?  How do you keep doing it?

People have told me I’m strong, that they don’t know how I do it, that I’m an inspiration. You know better than I do that I’m only doing what I have to, what any parent in our situation would do. Maybe you can relate when I say being told I’m “strong” or that I make someone “proud” is not always enough. 

Sure, those sentiments make me smile and give me a little boost of reassurance, but then looking at my daughter, being “strong” and “inspirational” has done nothing to help her physical, mental or emotional development. 

I know this journey is going to be an uphill battle, and there will be depressing and challenging days. I also know the journey will have plenty of celebrations that will counterbalance the negatives, and of course, in the end, it will all be worth it. 

However, no one knows more than you that this road with all the bumps, forks and unpaved paths can be hard. Tell me, how do I maneuver through it all? I know like parenthood and life in general, we all experience things differently, and I’m sure I will learn along the way — but what advice can you give a rookie to reference for many years to come?

What I’m asking, dear moms and dads who have traveled this road for much longer than I have, is this: What gets you out of the slumps? What makes you stay sane? How do you balance your fears alongside reality? Is there anything that will help heal the feeling in the pit of my stomach or the ache in my heart? When all you have is hope and faith, and you begin to see those fade, how do you get them back? How do I climb to the top of the mountain and get some fresh air? If I keep my eye on the prize, what does that look like? If I’m honest and realistic about what the future holds developmentally for my daughter, have I given up on her? Does that mean I already lost the hope? If I keep dreaming about what the future might hold, am I just naive if I think those dreams might actually become a reality?

My motto over the past eight and half months is that we will try everything once. It doesn’t matter if the idea appears ridiculous or holds no water. If someone tells me dancing in rain puddles will get my daughter to laugh, you bet I’ll place her outside in a storm. I’ll continue to dream and take chances, but how do I protect my heart from the extreme pain that follows when those “miracle treatments” just don’t work for us? How do I balance the fact that I feel like a failure, when I know deep down it really won’t make much of a difference if I sit that one “potentially life-altering experience” out?

If you, my dear veterans, could give some advice for me on this journey, what would it be?

Sincerely,

A rookie mom to a special baby girl who has special needs

Follow this journey on Sonya’s Story.

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A Letter to the Future, From Someone With a Mental Illness

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Dear Americans living in 2100,

I am writing you from the year 2015. Those of us living now often look back on the past and wonder, “How could people live like that?” “How could people do that to one another?” or “How could people have believed that?”

Since you’re reading this letter 85 years after it was written, I’m sure you have some of the same questions for those of us living now.

First of all, I want to tell you that we are not bad people. Most of us are not cruel, hateful or lacking in compassion. It’s not that we’re ignorant either — we have access to information from all over the world 24 hours a day.

But I’ll try to explain to you how we came to treat our fellow human beings in such despicable ways. One thing that might shock you, if you look up pictures from this period, is that most dogs and cats are treated better than some of our citizens. In fact, if a dog or cat is abused, it’s called animal cruelty and people can go to jail for it. But yet, we still have people living on the streets. Yes, we have people without homes living on the street. It is not just a few people either. The population has been steadily increasing since the 1970s, and about one-third live with a various mental illness.

I want to talk to you about those people who have a mental illness, like me. Some things have changed for us over time — we no longer stick what looked like an ice pick in someone’s eye socket and sever part of their brain – a widely accepted practice in the late 1940’s and 1950’s. We also have stopped strapping people into baths, giving insulin-coma therapy and forcing chemically induced seizures.

We used to have asylums to house the mentally ill. Asylums were like hospitals, but it was discovered that people were being mistreated in these large institutions. These asylums were closed in a mass movement starting in 1955. But the problem was we didn’t have an alternative plan, and now, many of those people are now living in the streets or are in prison. There are now more people with mental illness in jail than in hospitals.

What I want to tell you is the why it happened, and why it is still happening. People with mental illnesses have been systematically marginalized and dehumanized since before this country was founded, and the implications of that marginalization and dehumanization have not made their way out of our culture yet. For instance, people use language on a daily basis that is degrading to the mentally ill. The use of this language is so widespread that it is even found in art, literature and in comments from politicians. Recently, a politician said that people who wanted God out of our country are schizophrenic. In 2015, while I believe no one would make a derogatory remark about cancer or diabetes, there are people who dress up as mental patients to celebrate Halloween.

Right now in America we have a crisis with guns. Basically, the problem is they’re being used to kill people every day. It is common to blame these shootings on people who have mentall illness, another tactic that not only dehumanizes people with mental illness, but demonizes them.

So, you can see that our negative treatment of people who have mental illness is a longstanding one. That’s why I’m writing to you, in the hope you don’t carry on our beliefs, our discrimination, our jokes or our derogatory language.

You are the future — a future of cures and hopes. We have failed in so many ways. Please don’t be like us. Please rise above us and be better. We are counting on you.

All rights reserved. A version of this article originally appeared on PsychCentral.com as “Letter to Future Americans.” Reprinted here with permission.

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