6 Things I Wish Someone Told Me When I Became a Special Needs Parent

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When you receive a diagnosis for your child, your life completely and irrevocably changes.

The life you expected and the path you laid out for you and your family is now a maze with no clear direction or conclusion.

I can still vividly remember all the overwhelming feelings that hit me with the first diagnosis we received. There was shock, disbelief, anger, guilt, dismay, panic, denial and confusion.

I felt each and every one of those emotions all at once. Over the following weeks, months and years, those feelings remained, in one form or another. And with each subsequent diagnosis we received, they hit me again with renewed force.

Over 10 years on, I now know these feelings will never completely go away, and I have learned to manage them better. But for someone new to the special needs parenting world, it can be a huge shock to the system.

So I want to give them the advice I wish I had received when my journey began.

1. Don’t be afraid of your emotions.

You need to recognize and accept that everything you feel at first is natural. In order to accept the diagnosis and move forward to give your child the best possible outcome, you need to acknowledge your feelings and move through the stages that will follow.

It is fine to seek professional help if you feel you aren’t coping. It is fine to take some time out to try and work through everything. Don’t fight your feelings. Accept them and then use them to move on.

2. Know that you are not alone.

There are other families out there with special needs, and it’s important to connect with those facing similar challenges as you. I was not comfortable with this at first — I didn’t feel I needed help and thought I could do this on my own. But it has only been in the last few years (coinciding with finally joining some groups myself) that I have felt more at peace with the diagnoses and how we are dealing with them.

3. Find a support group and have the courage to join up.

If it’s too raw and confronting to meet with others in person, find an online group to join. There are countless local, national and international support groups on Facebook and they offer a wealth of information, personal experience and support.

There are also fabulous special needs parent blogs out there, not to mention the many specialist pages providing advice, assistance and support to the families of the newly diagnosed. Find them, join them and take in information at your own pace.

4. Make time for yourself and your partner.

This is not easy, but you need to give this a try. You will not be an effective caregiver for your child if you are mentally and physically exhausted. You need to look after yourself and that means trying to find some time away and not feeling guilty about it.

If you are in a relationship, you also need to find time to spend with your partner. The daily demands of parenting a special needs child can be strenuous. At times you have to consciously set that aside and devote yourselves to each other, or else you may lose yourself and your relationship.

5. Regardless of the diagnosis, your child is still the same precious person he or she was yesterday.

Do not let a diagnosis or a name or a label change how you love and cherish and protect your child. Your child is more than just a condition or a diagnosis. Celebrate their achievements, recognize their strengths and support their efforts.

6. Believe in yourself and in your ability to make decisions regarding your child’s treatment.

You will feel powerless and overwhelmed at first. You will wonder if you will ever be able to have the knowledge to make treatment and therapy decisions for your child.

Never forget that you know your child best and you will always be their best advocate throughout your journey. Believe in yourself and trust your instincts when it comes to making decisions for your child. You may not be an expert in your child’s condition, but you are an expert in who they are, which is just as important.

Follow this journey on My Home Truths.

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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Two simple words. That’s all it took for a flood of memories and grief to come rushing back. With two little words, I was brought back to June 23, 2013, the day I delivered my triplets and the day my first child died.

Our surviving triplet, Peyton, has a special bedtime routine that includes saying hello to her brother and sister. Above her changing table hang three shadow boxes, one for each triplet. Inside, pictures are on display along with other hospital keepsakes from our 22-week micro preemies. Peyton loves to look at the shadowboxes and often says “Hi Abby” and “Hi Parker.” But this night was different. As Peyton said hello to Abby, she looked closely at the picture, and then with her little voice she said, “Wake up.”

How do you explain to your daughter that her identical sister will never “wake up”? How do you tell her that her sister lived for only hours, and her brother for only two months? How do I explain that we never saw Abby’s beautiful eyes, because at 22 weeks they were still shut? In that moment, tears began to well up and a massive lump formed in my throat. My sweet child is now starting to comprehend things. And just recently, Peyton found her voice, a quiet and beautiful sound that takes me by surprise. I never imagined that two innocent words could be so sweet and endearing, yet so unbelievably heartbreaking. As Peyton told her sister to “wake up,” my heart swelled with pride. She remembers her brother and sister, sharing a special bond that dates back to the early days in the womb. It was at that moment I realized we will someday have to explain to Peyton why her brother and sister are no longer here. It’s a conversation I knew would eventually come about, but never did I imagine that she could be asking this early on in her young life.

Our two angels will always be a big part of our family, and I will always be their mother. I don’t know what I’ll say when the time comes or how I’ll help Peyton understand, but I know we’ll be ready. As for those two little words, “wake up,” it’s a moment I will remember and cherish forever. Because in that moment, all my fears went away, my motherly instinct taking over. I looked at Peyton and smiled as I said, “Abby is sleeping in heaven.” I then wrapped my arms around my precious daughter and gave her a hug, not wanting to let go. As tears rolled down my face and onto my child, Peyton quietly whispered back, “Heaven.”

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Amusement Park Shamed Online After Man With Special Needs Lost His Job

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Dorney Park and Wildwater Kingdom, an amusement park in Lehigh County, Pennsylvania, came under fire recently for deciding not to re-hire an employee with special needs who has worked cleaning bathrooms at the park for the last 12 seasons, The Associated Press reported.

Chris Emery, 29, was told there was a new interview process being implemented this year for the job and at the end of the interview his mother, Claudia Emery, was told Chris didn’t do well enough to be re-hired, The Morning Call reported.

The company offered Emery a chance to interview again, but his mother said he’d been humiliated and declined the offer. Outraged at the news that Emery didn’t “pass” the interview, a former co-worker, Matt Redline, took to Facebook to vent his frustrations.

I can’t express how angry and hurt I am right now!!! This is my buddy Chris. I had the pleasure of getting to know him…

Posted by Matt Redline on Thursday, February 4, 2016

 

His post read: 

I can’t express how angry and hurt I am right now! This is my buddy Chris. I had the pleasure of getting to know him and his family during my 10-year employment at Dorney Park and Wildwater Kingdom. In his hands he is holding a certificate praising him for 12 years of service at the park. Chris is a special needs person but let me tell you he is one of the most gracious human beings I have ever met. Today, his mom Claudia was told Dorney will not be hiring him back because he doesn’t “fit what they’re looking for.” You should all be ashamed of yourselves. Chris lived for that park. He has a bigger heart than any of you will ever know and it sickens me that a company who prides themselves on cornerstones and family values would turn their backs on one of their most loyal employees for being different. Again shame on all of you. Claudia Peiffer Emery, hang in there…You know your family has an army behind them of all of the people whose hearts Chris has touched!

Since he posted it on February 4, Redline’s post has been shared more than 35,000 times. It succeeded in creating a social media firestorm, with people taking to Twitter as well as Facebook to shame the amusement park.

The outcry succeeded in getting the attention of the amusement park executives who then offered Emery back his job.

Mike Fehnel, Vice President and General Manager of the park, posted on the Dorney Park Facebook page, saying that when he became aware of the situation he immediately requested his team reach out to Emery and request to re-hire him. Emery however, has declined their offer.

It was all a little too late for us,” His mother, Claudia Emery, told The Morning Call. “This should never have happened. It just wasn’t fair. I’m not going to boycott Dorney, That’s not fair to him either. I just want them to revise that interview process. I hope this helps another family.”

Chris Emery says in the future he’ll return to the park to play the games but not as an employee.

Get more on the story from the video below: 

 

The Mighty reached out to Dorney Park for comment but has yet to hear back. 

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5 Mighty Sports Stories You Don’t Need to Be a Sports Fan to Love

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Maybe you’re not a huge sports person. Maybe your favorite parts of the Super Bowl are food and commercials. Since that’s the case for a lot of people, we thought we’d round up some of our favorite Mighty sports stories. The best part? You don’t need to be a fan to understand why we root for moments like these to happen.

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In July, Nike debuted a sneaker for people with disabilities. The shoe was inspired by Matthew Walzer, a 16-year-old who has cerebral palsy. The teen wrote a letter to Nike asking the company to consider developing a shoe designed for people who have trouble tying shoelaces. “My dream is to go to the college of my choice without having to worry about someone coming to tie my shoes every day,” he wrote, according to Nike. “As a teenager who is striving to become totally self-sufficient, I find this extremely frustrating and, at times, embarrassing.” Nike listened.

Do you have a sports story you’d like to see featured on The Mighty? Send one to [email protected]

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To the Parent Whose Child Received a Life-Altering Diagnosis Today

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Today is going to be hard as you arrive at the doctor’s office or you pick up that phone call. You will receive a diagnosis for your child that may feel impossible to hear and accept. Maybe it’s something you have suspected, but at times doubted, too. Maybe it’s something that caught you by complete surprise. Maybe your child isn’t born yet, and they are sharing this information as your little one is still growing inside you. Either way, hearing the words from a professional will be difficult.

You may have waited for this day a long time. Maybe it’s been months of testing and unknowns. You may have researched specialists and conditions and tests. You may have had to urge your doctor to keep going in the quest for answers. You knew there was something. Or you may not have suspected a thing. Either way, this is going to feel so life-altering. You may grieve for what you envisioned to be.

I know this feeling, because I was that parent yesterday. I sat in the doctor’s office with my husband and learned that my sweet little girl has a rare genetic mutation. After a long road of testing and wondering, the answer came. It was hard, it was devastating, and the world stood still for a moment. I reached for my husband’s hand for strength, and we kept listening as terms and processes were explained to us. We walked around the hospital holding hands because we needed to process all we learned before heading home. We checked on each other throughout the day, and between tears we assured each other that we will walk this journey together.

If you are that parent today waiting for results, I want you to know that it’s ok to grieve. I am just a day ahead of you and things are better already. This morning as I woke up in a flood of emotions, I went to my daughter’s room and there she was, unaware of anything different. She reached up her arms and wanted to be picked up as any day before the diagnosis. She is the same as she was, now we just know more. My initial shock turned into more research and a determination to make each day count.

Who knows what the coming days, months and years hold for us. And who knows what it will hold for you. I don’t have any cute sayings or words of wisdom. I can only say today is better than the day before. And tomorrow may be better than today. Nothing has changed, and everything has changed. It is our faith, linking arms with friends and one brave little girl that give us courage. And I believe that will be true for you also.

A version of this post first appeared on Joyful Journey Mom.

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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.

Lead photo source: Thinkstock Images

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To the Moms Like Me Who Have Limited Support in Their Lives

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“In case of emergency call…”

I get stumped by that question every time I see it. I always put my husband and his information down, and I’m sad to say that I don’t have a back-up. 

I don’t have anyone to talk to about how hard my life can feel. I struggle with my own illnesses and disabilities while raising two beautiful little girls, the youngest also living with disabilities. 

I don’t know what I’m doing, and I’m scared every single day that I’m screwing it up. What I do directly affects my children. I believe the people they will become rests in my hands, and that is a lot for one person to handle. 

I don’t have anyone to come over my house and relieve me for a day. I don’t even have anyone who could do it for an hour. My kids are with me 24/7. My husband works hard to provide for us, and that means working six, sometimes seven days a week. He’s my “in case of emergency call” person. I’m pretty sure I’m his, too. It’s scary because that’s a lot to put on just one person. But when that’s all you’ve got, that is literally all you’ve got. 

There are no “Hey, let’s take your kids for the night” or “Why don’t I watch the kids for you so you guys can go out to eat?” moments. There are appointments for me that I make and hope I can go to, and then I feel bad when I have to call and reschedule.

I believe being a parent is the hardest job in the world. It’s nice to have support and family to help you out when you are in need of help or just be there when you need to talk. It’s nice to know you’re not alone and that your support system has your back. And if you have that, that’s great and I’m happy for you. But I’m going to let you in on my deep, dark secret that eats at me. I try not to let it, but I just can’t help it. 

I’m kind of jealous! 

We have respite, but it’s not enough. We are extremely limited on who we can have care for both our children. We need to make sure each child’s needs are met, and we have to have someone who is available. That’s the hardest part. 

I have to tip my hat to single mothers, military families and families like ours with limited support and resources. This is not an easy job, and no one knows more than I do how hard you work. You give me strength, and you show me that if you can do it, I can, too! 

So to all the moms out there raising a child with special needs — I see you, I hear you, I feel you… and you kick a**! Please make sure to take care of yourself.

I applaud you, I salute you and I thank you. You’re my back-up “in case of emergency.”

Follow this journey on Melissa’s Facebook page.

Lead photo source: Thinkstock Images

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