by jphilo | Jun 15, 2012 | Different Dream, Holidays, Special Needs Parenting
With Fathers Day right around the corner, guest blogger Rudy Cordeiro has been thinking about his early days as dad to a child with special needs. His experiences over the years haven’t all been easy, but they have given him encouraging words to share with other dads just embarking on the same journey.
My First Fathers Day
by Rudy Cordeiro
The day seemed surreal. Sunday was usually my favorite day of the week, but on this Fathers Day I felt strangely out of place. “Happy Fathers Day!” people exclaimed.
Politely, I replied, “Thanks!” But my response felt empty.
I knew I would be a father, because I had dreamed of being one; just not like this. Talk about a different kind of dream! We had been anticipating our first child, but not this soon. My wife Rachel had been on hospital bed rest for five weeks, having initially experienced pre-term labor. Because we were hoping that the labor would hold off at least for a few weeks more, I proceeded to help lead a missions team on a trip to southern Brazil. I wasn’t scheduled to come home for two more days. (Rachel’s mom was staying with her while I was gone). But those plans changed.
Fathers Day Surprise
To our surprise, Camelia Faith came into this world just one day over 23 weeks gestation—three days before my first Fathers Day. I was in shock when I received the phone call and my heart was broken that I wasn’t able to be with my wife. Would my child even be alive by the time I arrive?
Within twenty-four hours, I had managed to drive back to the state capital of Brazil, catch a flight to Sao Paulo, and fly back to DC to meet up with my wife at the hospital. Although I had been in Brazil only 24 hours before, the trip quickly became a distant memory as my wife and I now had to face the grim realities of coping with a baby whose life was in jeopardy due to a severe premature birth.
Eight Years Later
Eight years later, those memories are still burned in my mind. They are sobering memories of a life seemingly lost, but thankfully I can rejoice today that my daughter, Cami, is alive and well. However, I still find myself asking: Am I really the parent of a special needs child? More often than not, I don’t even have time to consider that thought; but for the times I do, an overwhelming sense of responsibility plagues my soul. I often wonder, Am I adequately taking care of the needs of my special needs child, or have I neglected some aspect of providing for her?
Though at times these questions bother me, I am encouraged by the fact that my miracle daughter is alive today, and her overall health is better than what we had originally hoped.
As a result of raising our first born, Cami, my wife and I have been blessed to learn so much along the way about the world of parenting a child with special needs. We have discovered a wealth of resources through wonderful people—many whom we now call friends—that have been providentially placed along the path of our life’s journey.
Encouragement for Dads
To all the fathers of children with special needs, I want to offer this encouragement: the future holds much promise for each of our children. As dads to special needs children, the future seems intimidating, but retrospect often proves we have been harder on ourselves than we needed to be. Instead, focus on cherishing each moment you have together as a family. Make memories and relish in them by making the most of every opportunity. Being a father is an awesome responsibility, but it is one of the most rewarding callings in this entire world.
Happy Fathers Day!
What Was Your First Fathers Day Like?
Thanks, Rudy, for sharing your story and for encouraging other dads on a similar path.
How about you, readers? What is your first Fathers Day story? What lessons have you learned as the dad of a child with special needs? What encouraging words do you have for other parents? Leave a comment!
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by jphilo | Dec 23, 2011 | Different Dream, Holidays, Special Needs Parenting
Christmas, the holiday of joy and peace and hope, is almost here. But for parents of kids with special needs, it can be a time of sorrow and restlessness and despair. We wonder how a perfect and all powerful God can identify with the struggles our children live with every day.
The more I learn of God, the more convinced I am of his complete understanding and empathy for our children. After all, God is the creator of the special needs Christmas. When his Son came to earth in human form, he laid down perfect power, knowledge, and communion. Encased in human flesh, he was encumbered, dependent, and limited. The Son, both as a child and as an adult, lived with his own version of a special needs life, and it all began with a special needs Christmas.
May that thought provide a new perspective as you read the Christmas story (Luke 2:1-40, The Message Version) below.
The Birth
About that time Caesar Augustus ordered a census to be taken throughout the Empire. This was the first census when Quirinius was governor of Syria. Everyone had to travel to his own ancestral hometown to be accounted for. So Joseph went from the Galilean town of Nazareth up to Bethlehem in Judah, David’s town, for the census. As a descendant of David, he had to go there. He went with Mary, his fiance, who was pregnant. While they were there, the time came for her to give birth. She gave birth to a son, her firstborn. She wrapped him in a blanket and laid him in a manger, because there was no room in the hostel.
The Announcement
There were sheepherders camping in the neighborhood. They had set night watches over their sheep. Suddenly, God’s angel stood among them and God’s glory blazed around them. They were terrified. The angel said, “Don’t be afraid. I’m here to announce a great and joyful event that is meant for everybody, worldwide: A Savior has just been born in David’s town, a Savior who is Messiah and Master. This is what you’re to look for: a baby wrapped in a blanket and lying in a manger.” At once the angel was joined by a huge angelic choir singing God’s praises: Glory to God in the heavenly heights, Peace to all men and women on earth who please him. As the angel choir withdrew into heaven, the sheepherders talked it over. “Let’s get over to Bethlehem as fast as we can and see for ourselves what God has revealed to us.”
The Joy
They left, running, and found Mary and Joseph, and the baby lying in the manger. Seeing was believing. They told everyone they met what the angels had said about this child. All who heard the sheepherders were impressed. Mary kept all these things to herself, holding them dear, deep within herself. The sheepherders returned and let loose, glorifying and praising God for everything they had heard and seen. It turned out exactly the way they’d been told!
The Dedication
When the eighth day arrived, the day of circumcision, the child was named Jesus, the name given by the angel before he was conceived. Then when the days stipulated by Moses for purification were complete, they took him up to Jerusalem to offer him to God as commanded in God’s Law: “Every male who opens the womb shall be a holy offering to God,” and also to sacrifice the “pair of doves or two young pigeons” prescribed in God’s Law.
The Promise
In Jerusalem at the time, there was a man, Simeon by name, a good man, a man who lived in the prayerful expectancy of help for Israel. And the Holy Spirit was on him. The Holy Spirit had shown him that he would see the Messiah of God before he died. Led by the Spirit, he entered the Temple. As the parents of the child Jesus brought him in to carry out the rituals of the Law, Simeon took him into his arms and blessed God: God, you can now release your servant; release me in peace as you promised. With my own eyes I’ve seen your salvation; it’s now out in the open for everyone to see: A God-revealing light to the non-Jewish nations, and of glory for your people Israel. Jesus’ father and mother were speechless with surprise at these words. Simeon went on to bless them, and said to Mary his mother, This child marks both the failure and the recovery of many in Israel, A figure misunderstood and contradicted – the pain of a sword-thrust through you – But the rejection will force honesty, as God reveals who they really are.
The Hope
Anna the prophetess was also there, a daughter of Phanuel from the tribe of Asher. She was by now a very old woman. She had been married seven years and a widow for eighty-four. She never left the Temple area, worshiping night and day with her fastings and prayers. At the very time Simeon was praying, she showed up, broke into an anthem of praise to God, and talked about the child to all who were waiting expectantly for the freeing of Jerusalem. When they finished everything required by God in the Law, they returned to Galilee and their own town, Nazareth. There the child grew strong in body and wise in spirit. And the grace of God was on him.
God had a great purpose in mind for the Christ child encumbered by special needs. He has a great purpose for your child, too.
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by jphilo | Dec 22, 2011 | Different Dream, Holidays, Special Needs Parenting
How do parents and children experience joy beyond special needs at Christmas? Guest blogger Kathy Guzzo shares her journey to experiencing joy while celebrating Christmas with her adult daughter.
Experiencing Joy Beyond Special Needs
The holidays are a time for so many heartfelt events. From the excitement of the children as they write their letters to Santa, to the gatherings large and small of family and friends there seems to be laughter, and fun everywhere. Yet, for many families, like ours, there are times when the joy is dimmed by the reality and reminder that life isn’t all laughter and good times.
Physical Reminders of an Illness are Tough on a Mom
Every time our adult daughter, who’s had many complications from lupus and other chronic illnesses, comes home for a visit, especially during the holidays, reality hits. My mother’s heart wants to see the beautiful vibrant and athletic young girl with the thick long hair that I remember as a teenager. So when she walks in with her hair piece on, heavy makeup to cover the open ulcers on her face, long sleeves even in the heat of summer, because she’s so thin she’s always cold, and a sadness around her eyes my heart breaks a little. I’m sure part of my gut reaction is because she lives 500 miles away so I don’t see her very often. The other part is that as her mom, I just don’t want to see her like that.
I remember going out to for lunch after helping her move a couple years ago, and I got so frustrated with the people who would stare at her when they saw her. I knew it was really uncomfortable for her too. I wanted to tell them to quit staring, that she’s a fighter, that she’s honest, loyal, responsible, and loving, because I wanted them to see beyond the outward appearance.
Looking Beyond the Disease
Not long after that, when she came home for a visit, I realized I was acting like those strangers in the restaurant, looking at what the disease had done to her physically. This was a real jolt to me. I didn’t want to be the mom that looked on the surface. I never wanted her to doubt that she was loved unconditionally regardless of her appearance. Why? Because she was not the disease that had attacker her body. She was still the amazing young woman God had created to be my daughter and so much more.
From that point on whenever I’m going to see her or even talk with her on the phone, I ask God to give me the strength to go beyond than the disease, to see her with His eyes which go so much deeper than the surface. I can honestly say my heart is more at peace and our relationship has grown because I’m not constantly focusing on her illness. I’ve chosen not to always ask how she feels, if she’s been to the doctor recently, if she’s on new meds, if she’s eating or if she’s getting enough sleep. Instead we discuss the same type of topics I discuss with my kids that are healthy, and if she chooses to bring up her health we go from there.
In fact, I recently had a great time while visiting her. It wasn’t until I looked at some photos I took that I realized I hadn’t thought at all about her physical appearance the entire time I was with her. It was obvious by the photos that all the symptoms were still apparent, but I hadn’t noticed them. I was truly focused on enjoying my time with Andrea.
Joy Is a Choice
So as Christmas approaches I can’t wait for the time I’ll spend with my family laughing, eating lots of Christmas cookies, playing games and reminiscing. My heart will still ache each morning when Andrea comes downstairs extremely thin with a bandana on her head, because I hate that she has to deal with so much, but I know I’ll be able to focus on her, because she really is so much more than the diseases that have invaded her body. She is my daughter, and I’m choosing not to allow her illnesses to dim the joy that I experience this Christmas.
How Do You Experience Joy Beyond Special Needs?
Oops, I forgot to warn you that Kathy’s post carried a two tissue warning. Take a minute to grab some before leaving your comments about how you experience joy beyond special needs.
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by jphilo | Nov 10, 2011 | Different Dream, Holidays, Special Needs Parenting
Nancy Flanders knows Thanksgiving will be here in a few short weeks. So she’s back today with 6 Thanksgiving survival tips about how to make the day a success for kids with a variety of special needs. Once again her ideas are practical and simple things you can implement before the big day arrives on November 24.
6 Thanksgiving Survival Tips for Special Needs Families
Thanksgiving dinner is perhaps the biggest meal of the year in the United States. We spend most of the day eating, and then we continue to eat the leftovers for weeks. For families of children with special needs, big concerns come to the surface on Thanksgiving. It isn’t just about making the best turkey or pumpkin pie, but keeping our children comfortable, healthy and safe.
Over-Stimulation
For children who are easily over-stimulated, having a plan is the best way to keep the situation from getting out of control. Plan ahead with your child. If you are going to a home he hasn’t been to very often, show him pictures of the home and of the people that will be there. Talk about what the party will be like and what he can expect. Include in your plan, a way for you and your child to escape if a meltdown occurs. Talk to your host about a space in the home where your child can go if he feels overwhelmed. Bring a bag of his favorite things to have on hand during this downtime.
The Child Who Can’t Eat
For people with Prader-Willi Syndrome, overeating can be deadly and Thanksgiving is traditionally a day of overeating. If you are the parent of a child with PWS, you may feel isolated, especially around the holidays. You can go to the family get-together, but you have to have a plan and be vigilant. Make sure your child plays in a different room than where the food is, but try to position yourself so that the food is in your line of sight. Make sure you are the one who makes a plate of food for your child, and have her sit at a table where there isn’t any other food. You can find more tips for your child, your host, or your guest with PWS at the association website.
The Child Who Must Eat
Children with cystic fibrosis must eat up to 150% more calories than their peers every day. So Thanksgiving is a great day for these families, unless of course, your child with CF is too distracted to eat. There’s so much going on that your child may not be able to focus on her food and may just want to get down from the table to play. Try to entice her with her favorite foods. One trick that has worked for my daughter with CF is to put whipped cream on everything. She seems to dive right in. You can also remove her from the distractions to a quieter area of the home where the two of you can sit and eat together.
The Child with a Feeding Tube
For the child who is fed exclusively by feeding tube, a big family dinner can be tough. If relatives are comfortable having your child tube fed at the table while everyone else eats, there are some Thanksgiving tube feeding recipes you can try. You can also feed your child ahead of time, or if your child is uncomfortable with these options, you can wait to attend the party until after dinner has been served.
The Child with Tics or Outbursts
For children with Tourette Syndrome or non-verbal children who make sudden load noises, Thanksgiving dinner can make some relatives uncomfortable. And when they stare at your child or make comments, it hurts your child. Talk to the host and other party guests ahead of time to explain the situation and remind them that your child faces stares and rude comments every day, and you and she are both excited to be at dinner with understanding family members. Offer them your best advice for having patience with stuttering and not reacting when a child has an outburst. Give them the knowledge you have gained so that they can handle the situation and your child can feel comfortable.
The Child Who Can’t Get Sick
My family’s biggest issue during Thanksgiving is germs. It’s cold and flu season and people with cystic fibrosis need to avoid respiratory germs. This is a tough topic to bring up when planning a Thanksgiving dinner. Whether the party is at your house, or a relative’s house, you need to make sure everyone understands that they should stay home if they are sick. Inevitably, someone will show up saying he just has a cold. When this happens, you have two choices. You can turn around and leave, which will probably upset your child, or you can stay. If you stay, there are rules you can follow to reduce your child’s chances of getting ill. Keep at least 3 feet away from the person who is sick and the rest of their immediate family. Wash your hands or use hand-sanitizing wipes like Sani-Wipes often. If it is a child who is sick, this makes life a bit tougher. When my daughter was younger, we simply put up a baby gate and kept her in it with a bunch of clean toys. Now that she’s a bit older, we are extra careful to wash her hands and keep certain toys away from the sick child.
Thanksgiving is a holiday that should be celebrated, no matter what special need your child has. Don’t deprive her of family time if you don’t have to. With a little planning and a lot of attention to detail, you and your child can enjoy a traditional Thanksgiving.
Share Your Thanksgiving Survival Tips
Nancy had some great tips. Maybe you have some other tips about specials need not mentioned in this post or simple things that have made a positive difference in the past. Please, we’d love to hear them, so share them in the comment box if you like.
Nancy Flanders is a wife and mother of two girls, one with cystic fibrosis. After her daughter’s diagnosis at just 6 days old, she altered her career path to focus on writing about raising a child with a special health need. She spends any free moment she can find fundraising for a cure for her daughter and volunteering for her hospital’s cystic fibrosis advisory group. Visit Nancy at www.chronicadmissions.blogspot.com and www.parentingsquad.com.
Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.
by jphilo | Oct 18, 2011 | Different Dream, Holidays, Special Needs Parenting
Only two more weeks until Halloween and Nancy Flanders is here with a few tricks for parents of kids with food restrictions. Take a look at her suggestions and see which ones could work for you on October 31.
How To Trick or Treat with a Food Restriction
Halloween is just around the corner and millions of households will be taken over by candy. So much delicious candy! But for some families, the debate isn’t about how much or how little to eat in a sitting, but how that candy will affect their child’s health and life. Conditions like food allergies and diabetes are cause for serious concern around Halloween, but having a strategic plan can help.
Trick-or-Treat with Care
Sit down with your family and make a set of rules for the evening. Make sure your child is well supervised if she isn’t old enough to be trusted with the rules on her own. Don’t let her eat any candy until she gets home when you will sit down together to go through the candy and check for allergy or carb count dangers. If your child has a condition like cystic fibrosis, you can give her an enzyme or two before she heads out to trick-or-treat or agree that she has to wait until she gets home to eat any candy.
Talk to the Neighbors
It really does take a village. If your neighbors and friends don’t know about your child’s diet restrictions, this is the perfect chance to inform them. You can give them certain candy or safe treats that they can have on hand to give to your child when she rings their doorbell. In this case, stick to trick-or-treating at the homes of those who know your child best.
Pull a Trick of Your Own
If your child is too young to understand why she can’t have certain candies, she probably won’t notice if you swap out her Halloween bag with an identical one full of treats and toys you picked out. It’s sneaky, but will keep your child safe.
Don’t Trick-or-Treat
Rather than trick-or-treating, host a party at home. For children with diet restrictions this is the best way to control their candy type and amount without having to take any candy away from them. For the child with diabetes, you can have sugar-free candy available. For the child with nut allergies you can make sure there is only candy without nuts in your home. The child with Prader-Willi syndrome can also be well monitored during a party at home with a small amount of treats. So in the end you aren’t the bad guy, but the good guy who let them have a party.
Any Tricks Up Your Sleeve?
Those are the tricks Nancy’s developed over the years. How about you? What diet restriction tips are up your sleeves? Leave a comment about your child’s restrictions and what works for you.
Nancy Flanders is a wife and mother of two girls, one with cystic fibrosis. After her daughter’s diagnosis at just 6 days old, she altered her career path to focus on writing about raising a child with a special health need. She spends any free moment she can find fundraising for a cure for her daughter and volunteering for her hospital’s cystic fibrosis advisory group. Visit Nancy at www.chronicadmissions.blogspot.com and www.parentingsquad.com.
Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.
by jphilo | Oct 12, 2011 | Different Dream, Holidays, Special Needs Parenting
Are you feeling more hopeful about Halloween after reading Part 1 of guest blogger Amy Stout’s series yesterday? Then today’s post will encourage you even more. Today, Amy gives ideas about how to make Halloween not only fun, but also purposeful. You may be wondering what that means. Read on to find out!
A Special Needs Halloween: Creating a Successful and Purposeful Holiday, Pt. 2
After receiving our daughter’s diagnosis of Autism Spectrum Disorder (PDD-NOS), we quickly realized that Halloween is a wonderful holiday for helping our daughter to practice the skills she is learning in a very effective, natural and appropriate way.
Strategies For A Purposeful Special Needs Halloween:
Manners and eye contact: Specifically saying “Thank You” and expressing appreciation for the gift of candy (and the compliments on her costume). Before Kylie can leave a house with her candy, she must thank the person who gave it to her. We prompt her to look at the person and then to say or sign “Thank You” – by the end of the evening, she is almost doing it on her own (very little prompting needed).
Taking turns: When there is a group of children gathering at a home, we have Kylie wait her turn. This teaches her patience and being kind to our friends.
Greeting one another: When we approach or pass a child on the sidewalk, we prompt Kylie to greet them by saying “Hi, Friend”.
Boundaries: We allow Kylie a few treats during the evening but we limit them by using the “First/Then” method. It might sound something like this: FIRST Smarties THEN lollypop or FIRST Hershey’s kiss, THEN book. It sets the tone for an ending.
Safety: When she was an infant, we taught Kylie a little saying so that she would never “fight” being buckled into a car seat. We said “Buckle up for Safety” and we gradually progressed to “Buckle up…” and Kylie would finish “For Safety”. When we are out and about, we require Kylie to hold our hands. We adapt the saying to “Hold hands… For Safety”. This is just an accepted part of her routine.
Faith: We use the book The Pumpkin Gospel to put a faith base to the holiday of Halloween. (we love the object lesson of pumpkin carving to teach that God can take away all of the yucky things in us and give us a light to shine for him). Another good book is The Pumpkin Parable.
Time to Share Your Special Needs Halloween Tricks
Now that Amy’s shared the tricks she and Dan use to make Halloween successful for Kylie, it’s your turn. What tricks do you use to help your child? Please leave a comment below. To take a look at Kylie’s Halloween outfits from year to year, visit Amy’s blog at http://histreasuredprincess.blogspot.com/ . This child is absolutely adorable!
Part One
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