The 3 Milestones We Needed to Settle Into Life as a Special Needs Family

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Emily Perl Kingsley wrote “Welcome to Holland,” a beautiful poem about planning the life we intend to have with the healthy child we anticipate, and learning to live with the profound challenges some of our children have. Emily talks about planning a trip to Italy and ending up in Holland – a strange place you’re not ready for, but in time, you see it has beauty all around.

As the father of a 5-year-old boy named Jack who has cerebral palsy, cortical visual impairment, epilepsy, and dysgenesis of the corpus callosum, I can relate to the challenge of that transition. I intended to share all of my favorite things with Jack, like motorcycles, airplanes and playing catch in the yard. All of the plans I made going into fatherhood didn’t apply to my little boy, and it took some time to recognize how amazing our life in this unexpected place really is. I have a short list of milestones I believe were crucial in transitioning into what has become a life more fulfilling than anything I could’ve ever dreamed of.

1. We stopped isolating ourselves and reached out to friends and family.

In December 2011, Jack had MRI results that indicated he had leukodystrophy, which is a difficult diagnosis that carries a very serious prognosis. I don’t recall that period of time very clearly; it’s a blur. My little boy was likely going to be leaving us early in his childhood. My whole being cried… body, heart and soul. I cried until I couldn’t cry anymore. I was also distraught knowing my wife was the primary household earner, and she wouldn’t be free to spend her remaining time with little Jack. 

I set up a crowdfunding project to raise funds that would allow her to stop working while she stayed home to focus on our boy. The effort was received so well by our family and friends, and quickly we had support from all over the United States and beyond. Then, about a week into the funding effort, the phone rang and the doctors retracted the diagnosis of leukodystrophy. Wow! A lot of prayers were answered in that moment. Ultimately, we ended the funding effort and returned the money that was so generously donated. Only there are some things you just can’t return – mainly, love.

When the initial email went out describing our situation and Jack’s challenges, the most common response was, “We had no idea you were going through this! How can we help?” Without even realizing it, we’d become so buried in challenges that we cut ourselves out of the lives of friends and family. Coming out of that isolation was the most helpful thing we did to become comfortable and ultimately embrace our life as parents of a special needs child. If you’re isolating yourself right now, please know many of the people in your life want to help, so let them – the first step is opening up and letting them in.

2. We found a unique way to connect with other special needs families.

The amount of love we’ve received from the world since Jack’s arrival is, like so many things in our lives, hard to describe. I found myself so surrounded by it, I felt obligated to give back to other families like my own. As it turns out, Jack bought me a guitar after we learned he was blind, and that became one of the primary ways we bond with each other. 

Ultimately, it was this bond we used in our effort to make Holland a better place when Jack inspired the creation of Giving Songs.  This is an all-volunteer group helping families with blind, multi-disabled children through the sale of locally recorded music. The remarkable thing is that every family we help offers some form of help in return, in addition to a priceless new friendship. I’m not suggesting every family should start a foundation, but I do suggest finding a local organization that supports your child’s community and getting involved. You’ll make friends, learn to avoid unnecessary pitfalls, and learn about resources you didn’t know existed.

3. We realized we’re happier where we are than where we thought we wanted to be.

In 2008, I answered an interview question about my five-year plan with this: “I’m 30 – I want to finish my MBA, buy a home, start a family, and ultimately be sitting on your side of the desk.” I did get that job, but my five-year plan was a bit bumpier than expected. Although I completed each of the goals I mentioned, I didn’t know that I’d also become an entirely different person. 

I know what true love is now. I’ve watched an amazing woman raise our amazing boy. I know what’s important, and it isn’t the stuff you buy with money (except for wheelchair-accessible vehicles, those are important and typically require money). I’ve learned to embrace the world as it is, and the people in it as they are. 

The road we’ve travelled is so much more difficult than I ever could’ve imagined, but it’s equally as rewarding and beautiful. The day you realize that you’re happier where you are, than where you thought you wanted to be, is the day you’re truly at home here in “Holland.”

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The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) 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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Little Boy With No Eyes or Upper Jaw Gets Transformational Surgery

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Yahya El Jabaly was born without eyes or upper jaw, and with a hole where his nose should be. Due to a rare birth defect, his facial bones didn’t fuse in the womb, leaving him unable to speak and susceptible to infection, according to Sunday Night, an Australian news outlet. His parents reportedly limited his interaction with others whenever they left their small village in Morocco, worried his appearance would be too jarring.

Then, when his father’s friend posted a plea on Facebook for a surgeon willing to perform a high-risk facial reconstruction surgery, the world took notice. Fatima Bakara, a Moroccan-born woman living in Melbourne, Australia, saw Yahya’s picture and decided to help find a surgeon for him. In 2014, she contacted Dr. Tony Holmes from Royal Children’s Hospital in Melbourne.

I don’t see a deformed child,” Holmes told Sunday Night. “I just see this beautiful little child, a beautiful little soul, that’s all I see.”

After 18 hours of facial reconstruction surgery on June 28, Yahya had a new face.

close up of young boy born with no eyes
Screenshot from Sunday Night video below.

“It’s a huge joy, a huge happiness to see my son in such a situation,” Yahya’s father, Mostafa, told Sunday Night.

Watch the incredible transformation in the video below:

h/t BuzzFeed News

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The Apology I Owe My Facebook Friends With 'Typical' Children

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For parents of special needs children social media can be an amazing network of support and knowledge to help us care for our kids.

We can find people locally and across the country who understand the frustration and joy that our current friends with typically developing kids (or no kids) sometimes cannot. We can find adaptive toys, equipment and clothing that will help our children have more inclusive lifestyles. It’s also easier for us to keep people up to date on our kid’s progress so we don’t have to constantly tell the same stories.

But as wonderful as this outlet can be, for us, social media can also be painful. So painful that if not for all the reasons above, I would have deleted my account over a year ago.

I owe an apology to my dear friends with “typical” children who have been so supportive. These are my friends who “like” so many of my son, Jak’s, photos I post and leave comments that are so encouraging. You do this for me, my husband and for my son, yet I can’t do it for you and your children.

I have written this to try to help you understand why, and to heal any hurt I may have caused by not doing so.

I feel I have come to terms with my son’s injury, as well as all the diagnoses and delays that have come with it so far. I generally feel I have processed the event in a healthy manner, but that doesn’t make facing it is easy.

Seeing kids who are years older than Jak (in photos, videos or real life) usually doesn’t bother me. But kids who are his age or younger and who do things he cannot often strikes a chord in me. I end up in a sad and angry place that doesn’t have a name, that doesn’t understand, that feels a tinge of jealousy and doesn’t have the energy to feel joy for someone else because the pain of sadness is overwhelming.

So far, my understanding is these feelings will never go away, but they steal away into the recesses of my mind to sometimes pop out when I’m at my most vulnerable. I don’t feel this way every day, just sometimes. And in those times, I could not “like” the video of your daughter guiding herself across the stair rail, wobbling with the sweetness of first steps.

I cannot comment on how adorable your son is in his high chair eating Cheetos, though when I post photos of Jak, messy from his therapeutic tastes, you always like them right away.

I won a battle with myself when I “liked” the photo of your daughter smiling brightly and hugging her face tightly to yours. I mourned because I can’t have that yet with Jak and the love of it all broke my heart. But I told myself I would show you both the love I had for you, and I did. But I didn’t have the strength to do it the next time.

Woman and her baby son, smiling.

Sadly, I am most sensitive when I find out my friends are pregnant or have had their new babies, because Jak’s injury was at birth. Thinking about that time upsets me more than anything else. When I see these things I have to quickly scroll on to try to stay away from that dark place within me. 

Your children are amazing and they are beautiful. You are wonderful parents and I love you all, but I often can’t show it. Please don’t think I’m asking you to stop sharing to spare me. I will see things that upset me all around. But I love you, so keep sharing.

Share their steps, share their words, share their laughter and all of their accomplishments. Show me their beauty. Be proud, but please understand why most times I cannot participate in the comments and the “liking” of your posts.

Please don’t be hurt or hold it against me when I don’t seem supportive, especially when you are. I am trying and I will get better. I love you and I’m sorry.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or 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 “Share Your Story” page for more about our submission guidelines.

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20 Items on My Cheat Sheet for Parents with a Recently Diagnosed Child

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When my son was diagnosed with an incurable disease as an infant, it was a scary time for us. But in a couple of weeks he’ll be 7, and I can’t believe how fast he’s grown. In honor of this milestone, here’s a cheat sheet I would have wanted to have as a mother of a newly diagnosed child:

1. You don’t have to have all the answers right now.

I know it feels like you should, but deal only with the issues in front of you. Ask questions but don’t overwhelm yourself. There will be time to become an expert, but it won’t happen in a day.

2. Take what you learn while researching lightly.

No child is the same. There are worst case scenarios for every illness, but don’t assume the worst until you must. Again, deal with the here and now.

3. Do not be afraid to make a phone call to your child’s physician.

I once was hesitant to call my son’s neurologist, but I got over it. Don’t hesitate to pick up the phone, even if it’s to ask additional questions. Medical staff really are there to help.

4. Buy a notebook.

The first year of post-diagnosis is a blur. It will be hard to remember everything. Write down what you feel is important. It will come in handy during doctor’s appointments. Also, write down all your questions before those appointments. Until you get the hang of your new normal, life will be chaotic.

5. Speaking of papers, you may want to organize a place for paperwork.

Life in a few years will be full of paperwork. These documents can be a lifeline of valuable information. Don’t lose them.

6. Get in contact with your local county funded board of disabilities.

There are many people and programs designed to help children facing life altering illnesses. Head Start and the local health department are also good places to contact. You may also want to speak with a social worker at the hospital.

7. Feeling distant from your child is normal and you are not a bad parent.

I know this may sound silly to say, but sometimes the addition of a diagnosis can make you feel distant from your child. There will be days where you will feel like you can no longer relate. He or she is the same child they were before you learned of this reality.

8. Love your child.

A child can feel a difference even if they aren’t able to verbalize it. Affection speaks it’s own language and is understood by all. I assure you, you still love your child and you will experience a love deeper than you have ever imagined.

9. Life doesn’t end here.

Right now, it feels like the life you knew is over. Yes, you will mourn. This is normal. The loss of a healthy child is real and you need to take your time to work through the grieving process.

10. Life is now about taking it one day at a time.

This was the hardest reality for me to face. I could no longer dream of tomorrow because every day with disability and disease is about getting through today.

11. Do not limit your child.

Some may disagree, but your child has great potential. Even if your child is severely disabled, he or she can teach you great things.

12. The sooner you let go of the guilt, the better.

Guilt doesn’t change reality. Replace guilt with determination. Every time you feel like you’re not doing enough, resolve to try harder.

13. You don’t have to be strong for anyone except your child.

There will be times your child will look at you with fear in his or her eyes. At those moments, you must be ready to say, “I’m here and everything will be alright.”

14. You are this child’s hero and you will be their champion.

You are stronger than you know and you will do great things, even when you feel like you’re failing. You will be a soft place to fall, a source of strength and a light for your child in dark times. You may feel at your weakest now, but your courage is about to be unleashed.

15. Speak up and speak out!

You have this child for a reason, find it and fulfill it! Use your voice and don’t feel bad about it.

16. This just may revive your hope in others.

You will experience compassion and understanding from many people, and this will give you a rare and special opportunity to see how much love there is in this world.

17. Don’t be afraid to reach out.

There are resources and people waiting to help. You now have a heavy responsibility, and asking for help doesn’t make you weak.

18. It’s never too late for a new start.

There have been difficult days I would rather forget, but there’s always a chance to try again. Regardless of what happens in a day, you can always step back, take a breath and work for the better.

19. You won’t always feel this bad.

I know it’s hard to believe right now, but it will get better.

20. Blow bubbles, sing silly songs and laugh with your child.

Smiling won’t be a cure, but it will help heal your heart!

There will inevitably be days you feel life is unfair and you’re powerless to change it. Remember, you are not alone. Many parents experience the same thing, and most will tell you how they’ve been transformed for the better because of the journey you’re about to embark on. You will see life more clearly and love more selflessly. Seeing life through the eyes of a child with special needs is life changing.

This post originally appeared on CrossRoadTrippers

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To the Speech Pathologist Who Said My Son Wouldn't Be a Genius Overnight

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“You know, with his developmental disability he isn’t going to become a genius overnight.”

I wasn’t prepared when these words tumbled out of the speech pathologist’s mouth. I didn’t respond. I was in shock.

All we had done was stand our ground and request to keep the same level of service. “Did she really say that?” kept running through my mind as we concluded the IEP. I wish I had the confidence and presence of mind during the meeting to respond to her harsh words.

So, if I could respond to her now, I would hope it would go something like this:

Do I know my youngest son has a developmental disability? Yes, I am quite aware. I was aware from the moment we took him home from the hospital and realized he couldn’t muster the coordination or energy to suck on his bottle. I was aware from the day our pediatrician said, “Are you sure you want to go through with this adoption?”

Lady, I have been with this treasure of a son from day one and I know everything about him.

But, do you know how his cheerful personality can light up a room?

Or, how much his teachers and caregivers enjoy his sense of humor and joie de vivre?

Do you know how brave he is when faced with many medical pokes and prods?

Do you know he loves sports and music and has a gift for mimicking the graceful moves of others?

Do you know he loves lions and tigers and dogs and Disneyland and “Star Wars?”

Do you know he has so much to offer the world beyond the constraints of your definition of genius?

So, by asking to keep the same level of service I was not holding on for a miracle. I walk in his reality every single day. I was asking to keep those services so he would have the same access to curriculum as children without speech impairment. It would not be fair to limit a 7-year-old’s potential in life to only academic success. We have just this small window to refine his speech development, and it hasn’t closed yet.

We are realistic, but we are not giving up yet. For our son’s benefit, I hope you haven’t either.

My son is happy, kind, and curious. He is braver than I will ever hope to be. He teaches me about joy every day, and I think that is what success is all about.

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The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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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29 Secrets of Being a Caregiver

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Caregiving can be a complicated job. Whether you’re a loved one or a medical professional, the experience is often exhausting and frustrating. But it can also be joyful and deeply rewarding.

The Mighty wanted to hear about the intricacies of being a caregiver from the people who do it every day. So we reached out to The Caregiver Space, a community of past, present and future caregivers. The group asked its readers on Facebook to share one secret about being a caregiver.

Here’s what we learned:

1. “Take time to do something nice for yourself, even if it’s something simple. A hot bath, a long walk… do whatever replenishes you. Don’t let your well run dry. You can’t be an efficient caregiver if you’re mentally and emotionally drained all the time. Learn to keep your well full with good things. It helps you deal with the ups and downs of caregiving.” — Marian Mengedoht

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2. “Seek help early for both yourself and the one you are caring for.” — Lorne Sobczyk

3. “It’s OK to get upset. Do not take abuse from the patient you are caring for. It’s important to understand your patient may be having a difficult time with a disability or disease, but no one has the right to verbally or physically abuse you. When this happens, seek help and talk with the patient’s doctors.” — Jacquie Harrington

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4. “Learning to be flexible and developing the ability to find the positive calm place within yourself even during a crisis has been so helpful. There are joyful moments everywhere if you look for them.” — Patricia Vreeland

5. “Ask for help when you need it. Don’t expect others to read your mind.”  — Sally Merryman

6. “Rest when you can. I have gotten really good at what I call ‘battle naps.’ Five to 15 minutes of sleep here or there will leave you feeling better since it is usually the night watch that leaves you worn out.” — Gregg McFarlan

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7. “When I get down physically, mentally and emotionally I look at my mother and see the trust and love in her eyes. In that second, I know why I do what I do.” — Brenda Simpson

8. “There will come a time when your loved one will be gone, and you will find comfort in the fact that you were their caregiver.”Karen Coetzer

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9. “Keep a sense of humor. It will be dark sometimes, but it’s still humor and will help alleviate stress.” — Cheryl Averso

10. “Stick with a routine and understand that when your loved one gives you a hard time they may just be frustrated due to loss of control. Carry on because deep down they know you won’t leave them.” — Erika Adler

11. “Even on the worst days, I know it’s worth it. And I am a better person because of it.” Raeschl Dabney

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12. “Get out and do something for yourself occasionally, whether it’s lunch with a friend, a pedicure or whatever. Join a support group, even one that’s online for advice and so you know you are not alone.” — Rebecca Grafton Grove

13. “It can be lonely and isolating.” — Laura Lynn Cowan

14. “You will discover a strength you never knew existed. Somehow you will summon the strength to love and care even when you don’t have the strength to brush your own teeth.” — Paula Wychopen

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15. “It [can allow] you to reconnect with your loved one in an unforgettable and deeply loving way.” — Cheryl Mann

16. “Take every opportunity to say ‘I love you.’ It will make you both feel better.” — Carol Masterson

17. “Compassion is a must. I care for [my patients] the way I want someone to care for my parents one day.” — Dawn Dusing

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18. “Always keep the person’s dignity priority number one, and everything you do or the decisions you make will be correct.” — Jerene Tussey

19. “The simplest thing can change a moment. Do a silly dance, blow some bubbles or point out the beauty in something.” — Krysta Malyniak

20. “I’m a caregiver for my adult son. I’m scared all the time about the future. The wait-list for group homes is long, and I’m scared to admit I look forward to the day we get our spot for him because I think people will judge me as a bad mother. I want him in a group home and happy knowing it’s OK to live somewhere else and that his mom and dad will be OK with him living somewhere else.” — Sondra Learn

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21. “Make yourself known as the caregiver when interacting with any medical professionals. Politely require them to communicate with you. They may know medicine, but you know your loved one. Make friends with nurses and office workers. They can become your allies.” — Jackie McDaniels

22. “You know what’s best for you and your loved one — don’t let anyone else tell you any different. Love them regardless.” — Traci Stroud

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23. “It’s a great honor and privilege.” — Russ Howard Sr.

24. “Caregiving is a constant learning experience. Most of us are untrained and learning as we go. Remain positive and stay on your path.” — Vivian Frazier

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25. “It’s OK to cry.” — Cynthia S. Simon

26. “Don’t ever turn down help, whether it’s mowing the lawn, doing laundry or picking up milk at the store. People will offer, so take them up on it.” — Susan Munz Marengo

27. “Do whatever you can to make the person happy. You will be so glad you did later on.” — Martha Rice

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28. “Be humble, respectful and patient. Have empathy and lots of it.” — Julianne Smith

29. “Trust in yourself and your gut feelings about yourself and your patient. Try to be tolerant and if you find it’s difficult, walk away for a few moments. Never give up on yourself. And most of all, love yourself. You are awesome.” — Madonna Nicolai

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For more resources for caregivers or to connect with other caregivers, visit The Caregiver Space.

*Some responses have been shortened and edited.

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