CDO’s 15 Giving Days AND 15 Giving Ways


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CDO’s 15 Days of Giving AND CDO’s 15 Ways of Giving

Chromosome disorders may affect 1 in 150 individuals.

Help CDO to always be there for those affected and their families by supporting our 15 Days of Giving Campaign.  Together we can do it!


1. CDO manages a Facebook group so members can share pictures, stories, and questions!
2. CDO offers personalized networking programs.  We work hard to match members with those who have the same or similar disorders, share medical conditions, and live in the same region.
3. The CDO Ask the Doctor service is available to all website visitors.
4. CDO maintains a library containing thousands of articles – we add up to 50 new articles monthly .
5. CDO employs consulting geneticists who answer personal inquiries and make referrals to additional resources.
6. CDO publishes a periodic newsletter.
7. CDO archives several years’ worth of newsletter issues that may be downloaded on demand from each member’s private CDO account.
8. CDO maintains an interactive website and is continually adding new resources to further help individuals and their families.
9. CDO offers personalized research services.
10. CDO monitors a telephone helpline 561.395.4252
11. CDO keeps a detailed database registry including medical and developmental symptoms allowing us to provide very real data (de-identified) to researchers
12. CDO raises awareness through Rare Chromosome Disorder Awareness Week each June.
13. CDO creates a calendar of member artwork and photos every holiday season… highlighting the beautiful faces and the beautiful creations of these members.
14. CDO operates an online store to help raise awareness.
15. And most importantly… For 25 years CDO’s many programs have ensured that individuals and their families know they are never alone. Whether this diagnosis is received prenatally or when a patient is an adult – CDO will always be there to help.

 

Recognizing Potential & Beauty: The Story of Emily – By Kathy Paulsen

Paulsen

When I received my daughter Emily’s diagnosis of a chromosome 5 long-arm deletion nearly 20 years ago, access to information regarding disabilities was minimal. There was no Internet. We had no personal computer. I received one very bleak case study from the genetic counselor, and was told, “She’s still the same person, take her home and love her.”

Of course I did that, but I struggled to do more as the doctor’s words “mental retardation” and “early intervention” echoed in my head. I was desperate for information, for compatriots in this foreign
community, for predictions of what my daughter’s life would be like. My lifeline was my CDO newsletter and parent network. I later discovered Unique, and I subscribed to Exceptional Parent magazine. I received some valuable information, but nowhere did I find a child just like mine. I found myself constantly trying to explain to others what I didn’t even understand myself.

I wish then there had been the uplifting and relatable stories of The Mighty back then, the ability to Google her conditions and to find a few others like her in a Facebook group.  I would have loved to have others’ online cheers for her inchstone successes, and to commiserate over the unique sorrows we faced. It is wonderful that those resources exist today. But she is still rare among the rare. Getting early services was easy, the needs of my verbal but largely unintelligible daughter clear. At 3, she had the developmental abilities of an 18 month old. I was warned that she would likely never learn to read. She started in a pre-primary impaired preschool and received speech, occupational, and physical therapy. I had some guidance and some support. The cloud was lifting.

As we fell into our “new normal,” life became happy again. My initial quest for answers softened into a day-at-a-time perspective. With the help of some excellent teachers and professionals, I could once again have mom as my primary role, putting educator and therapist secondary. And I realized that no child arrives with his or her fortunes foretold. So I could let go of trying to figure out Emily’s future, feel more content with the knowledge that we would be there to give her what she needs, when she needs it. I learned to let Emily be my guide for many things. I learned, as parents do with all children as they raise them, to interpret her body language and temperament. With her clues, I could avoid most crises and melt-downs. She knew more than anyone what she could do. My role was to coax and encourage, watch and listen.

There were, however, battles. Battles with insurance companies, with school personnel, and yes with my husband and with myself. Battles to get people to listen to information about a disability that has no syndrome name. Battles to be seen as the authority on Emily by the doctors charged with treating her. Battles to get school administrators to address bullying. Battles within myself to ignore the judgments thrown our way from friends and strangers alike when they would witness things they did not understand, and to figure out when to respond or explain. Battles to answer questions with elusive answers: what surgeries and treatments, what therapies, am I doing too little or too much, how much do we push her academically? Socially? Physically? How do I keep her identity and mine separate when our lives are so entwined? And the biggie now: How do I help people understand that disabled and capable are not mutually exclusive?

As we begin the journey to navigate Emily’s life as an adult, the lack of clarity persists. Organizations and individuals want proper labels for her, but they don’t exist. Maybe it’s a human tendency, to create neat categories to put folks into? Emily doesn’t fit into any easy category and never has. She did indeed learn to read. It took 6 years, but she hasn’t stopped since. Against all odds, she finished high school with a true diploma and now attends classes at community college. She delights in working with the 3 year olds at the Easter Seals preschool where she volunteers. She enthusiastically cheers for her Special Olympics swim teammates and gives her all to the sport. She has gifts and talents and loves putting them to use. She has a heart and soul that inspires all of us who know her to be better people. She has persistence and perseverance, creativity and kindness. But she also needs help crossing the street safely, buttering a piece of bread, and brushing her hair. She has very serious medical issues and real disabilities including developmental, vision and speech impairments.

I still struggle with how to explain her chromosome deletion to new people. Maybe that’s better. If I had a tidy label that people widely understood, in their own way, it would not tell the whole story of who she is. I would name the condition and people would think that’s her. It’s not. Not for anyone. We are each a messy array of personality traits, strengths and weaknesses, abilities and deficits. This array is impossible to fully discern from outward appearance or generalized category. Perhaps this understanding is one of Emily’s greatest gifts to me, recognizing potential and beauty in every individual.

10 Ways to Celebrate Rare Chromosome Disorder Awareness Week

TEN WAYS TO CELEBRATE RARE CHROMOSOME DISORDER AWARENESS WEEK JUNE 7 – 13 2015

PURCHASE and wear with pride your new RCDAW t-shirt.

ORGANIZE a RCDAW event. The event organizer and their child receive free t-shirts. The event could be a “dress down for a dollar” day, bake sale, dine-around at a local restaurant (portion of proceeds to CDO), or something else.

PARTICIPATE in CDO’s sibling poetry contest. Send poems (with first name and age of author) to info@chromodisorder.org or post on our Facebook page. Winner receives a RCDAW t-shirt.

CUSTOMIZE the new RCDAW logo to include your child’s picture.

VISIT the CDO website for all the latest information and news… www.chromodisoder.org.

SHARE the CDO link with Facebook friends and Twitter followers.

READ a book to your child that celebrates everyone… for example, Special People Special Ways by Arlene Maguire.

WRITE a letter to your congressperson expressing your support for the 21st Century Cures Act.

POST on Facebook or send a Tweet every day for the week describing how your child with a chromosome disorder is courageous, determined, optimistic, and more.

EMAIL information and a photo of your child to CDO at info@chromodisorder.org (diagnosis, likes, daily accomplishments, etc.). We will feature several children each day on Facebook, Instagram and Twitter during the week of June 7-13.

Chromosome Disorder Outreach Inc. is a non-profit organization providing information and support to all those coping with a rare chromosome disorder diagnosis.  Whether this diagnosis is received prenatally or as an adult, CDO will always be there to help.

2015RCDAWLogosmall

Smooth Surgery

Comforting your child at the hospital is never fun. However, there are some vital steps that can make it more relaxing and more effective for both you and your child.   You can bring familiar items with you, create a peaceful environment before and after surgery, and calm yourself.

The most frightening thing seems to be the unknown. I know my daughter was far more upset by her first few surgeries than she is now. The hospital has become familiar. The staff remembers us and we remember them. We kid that we are just trying to get enough “frequent flyer” miles from the hospital to earn the trip to Hawaii. I always talk to my daughter about the surgery. I remind her of the waiting room and the beds and the funny gown she gets to wear. I talk to her about the elevator rides and how I’ll be waiting for her. I try to remind her it’s going to be fine, just like the last time and the time before that and the one before that.

When my daughter was preregistered for her first surgery, the nurse asked if there was anything that brought her comfort. The only thing I could think of was me. As she has gotten older, and tolerates more sensory stimuli, she has adopted a favorite blanket. That always goes with us for surgery now. My daughter also loves music. When we pack for surgery, I make sure my phone is charged and that I pack a charger. That way I can make sure to have music for her. If we end of being admitted after surgery, I have several cd’s that I take, as each room in our pediatric wing has a cd player.

I also pack some of her favorite home “smells.” I love to have peppermint essential oil scenting my home. It’s a smell my daughter is very accustomed to. For that reason, I pack some essential oil blended into fractionated coconut oil. I rub that on my hands. Then as we snuggle, she feels more at home.   As with all essential oils, I take care not to rub it in her eyes or my own eyes.

When surgery is scheduled, I try to get one of the first appointments of the day. This allows for my daughter to fast while she is sleeping. It also helps with time management. We don’t end up waiting in the waiting room forever while doctors attempt to hurry with other procedures that have gone longer than planned. Her doctors are also more rested and refreshed. The waiting room is not as crowded, which allows us to have a little more breathing room and a little less stress.

Once my daughter has been taken back to the operating room, I usually put my headphones in. Just because you are wearing headphones doesn’t mean you have to listen to them. I usually do listen to my calming play list, but sometimes I just want that separation from the other people in the room. It allows me to rest a bit without having to answer questions from others. I usually can’t read a book, but a frivolous magazine comes in handy. I also like to play Sudoku on my phone because it forces me to concentrate on the numbers and not on what is happening with my daughter at that particular moment.

The most important thing I do during this time is to find a way to relax. I know that relaxing is extremely hard to do in this setting, but it is vital. As soon as surgery is over, and my daughter goes to recovery, I will need to be calm and able to hold her, sing to her, and make her feel better. I can’t do that if I am completely frazzled.

When I finally get to be with my daughter, I usually hold her in my arms. She is four years old, but very small.   She loves to be held in a particular way, so I hold her just that way. I ask for pillows to put under my arms so that I can hold her there as long as needs be.   I also sing to her. I don’t care that my voice is not that great, nor do I care what the nurses think. My girl likes me to sing to her, so I do.

The most important thing to remember is not to freak out. If they had to try five times to get her IV in and my daughter is covered with bandages from that and bruised to boot, I can be angry later. If she throws up all over me as she is coming out of the anesthesia, I clean myself up and snuggle her more. If she screams like a banshee and cries great big alligator tears, it breaks my heart. But, I have to keep myself calm so that she doesn’t pick up my stress and get more agitated.

I try to maintain this calm composure throughout the remainder of the day.   I utilize my hospital’s valet parking to help us arrive and leave. If I haven’t eaten, I pick up lunch, via drive through, on the way home. I usually put dinner in the crock pot early in the morning, pull out a freezer meal or order pizza for the family.   I don’t worry about the daily cleaning that isn’t getting done. It can wait. We all wear our comfy pj’s and watch silly old movies for the rest of the day.

The most important part of helping your child is to be calm yourself. Help them get familiar with the hospital. If they haven’t had surgery there before, take them to the hospital. Show them the waiting room. Help them meet some of the staff. Let them ride in the elevators. The day of the surgery, take familiar items with you. Remember that all of their senses may need to be calmed.   If your child likes to be massaged, remember to do that. If they can’t stand their feet rubbed, don’t rub them! Remember to calm yourself. Take deep breaths. Eat a snack. Stay hydrated. Talk to a friend. Both you and your child will feel much better about the day if you go about it calmly.

Submitted by: Kori Lester

 

 

Surgery from a Parent’s Point of View by Meshell LaBaun

You have been told by one of your child’s doctors that surgery is recommended to resolve an issue, what do you do now? In my experience this recommendation was never unexpected. My son was diagnosed with club feet prior to birth, I had weeks of preparation for his birth and knew that he would be placed in casts within a week after hospital discharge and a few months later he would have an outpatient surgery.

Of course life did not happen that perfectly. We had other medical issues which delayed discharge and the outpatient surgery ended up being an overnight, but I still knew it was coming. A few years later I asked his orthopedic surgeon if surgery was necessary again; she asked if we ever suspected a tethered spinal cord. The following week we were scheduled for his third spinal MRI after which, spinal surgery was recommended. We had been researching the pros and cons of spinal surgery for months so, again, it was not a surprise. A few months later we did need foot surgery again, as a mom I knew his feet were not correcting well. A year later I called the orthopedic surgeon to up our appointment, the feet were not right again, I was concerned surgery was the only option…I was right.

You know your child better than any of the doctors so learn to teach the doctors about your child because in many cases they may never see a child like yours again and you have the ability to truly express how great, fantastic and unique your child is. If you think surgery may be an option, inform the doctor, ask their opinion, ask another doctor if you want and then think of all the pros and cons regarding the surgery and make an informed decision. If a doctor does mention surgery and you are not prepared for this option to let them know you would like more information, a second opinion or at least some time to think about it. Unless the surgery is an emergency you have the right to take some time to prepare yourself and your child.

Typically you are given a few weeks’ notice before the surgery in planned, I tend to call the doctor to speed up scheduling. Take this time to familiarize yourself and your child to the hospital and the expectations of the day. My son is still young and not as aware as an older child but he does have an older brother so I take the time to explain to my other child what his little brother will have happen, how his daily schedule may be changed and why we are doing surgery. Let family know and if you want their assistance see who may be able to help. For our family we notify my younger son’s daycare staff, my older son’s teacher (to give her warning in advance for anxious behavior on his part), our places of employment and family. We ask the doctor when he will be clear for daycare so my husband and I can take the appropriate amount of time off work. We consider and ask advice on how to handle issues such as bathing, riding in a car seat, sitting chairs, sleeping to ensure that we are prepared to handle post-surgery care (which involves casts for us a lot of the time). See if it is possible to preregister for surgery by either calling the hospital or online, this can save you time the morning of the surgery. Make a list of things to take to the hospital both for yourself and for your child and ensure that the hospital does not have any restrictions. I am packing snacks, drinks and something to read for myself and books, toys, a sippy cup and snacks for my son. Don’t forget to pack any medications your child takes.

The night before surgery make note of when you are to stop giving your child food as well as when you have to hold off on clear liquids.   If you have to travel to a destination you are not familiar with review the path and give yourself plenty of time to arrive to the hospital. You may also review the hospital’s website for information on what to expect, some children’s hospitals have videos the kids can watch so they know what to expect that day.   Ensure your bag is packed and you have medications, insurance information and identification for your visit. Be as calm as you can to help reduce your child’s anxiety and everyone should get a good night sleep.

When you arrive at the hospital you may need to check in and finish registration, this is when you will supply insurance information and your identification and sign documents. Your child will be given an identification tag and you will have a choice as to where it goes, my son loves to chew anything so if possible we had it placed on his legs, if he was going to receive leg casts of course we had it go on his arm. Any issues with billing or parking should be discussed at this point in your visit. Next you may be directed to surgical waiting, or you may go directly here to check in until the staff is ready to take you and your child back to pre-op, there may be a limit to the number of visitors that go back so check with hospital staff before you arrive with family in tow. In pre-op is where you will meet anesthesiologist, nurses, doctors, etc , who are there to help you and your child as well as prepare your child for surgery.

If it is a teaching hospital, like the one we go to, you will typically meet two of each type of staff. The resident comes in first then the attending staff later. Help the hospital staff by informing them of what makes your child unique, they will ask a lot of history questions and do your best to answer questions and if a procedure was done in the hospital prior ensure they know to review prior notes. Items I have brought to the attention of staff are:

  • Ability for my son to get things off his hands (important for ID bracelets and IV lines)
  • Past difficulties with anesthesia
  • Ability to use a cup, sippy cup, or bottle and what drinks he dislikes (this is important for after surgery)
  • My son’s personality around strangers

 

As I said before you know your child the best so think about what is most important for someone to know about your child when you are not around and let them know how to best care for your child while they are in the hospital staffs care.

After your child goes into the operating room you will be directed to return to the waiting area and be told not to leave. Some people bring most of their family, others have just a spouse or perhaps another child, some are like me and sit alone. Each person knows how they can best deal with the situation and how they are most comfortable. I typically bring something to read and a few snacks so I don’t need to even run to the vending machine. If you do need to leave the room and you are alone inform a staff member that you are leaving and insure they have your child’s name and yours written down, if you have a cell phone give them your cell phone number so in the event that the doctor needs to speak to you they can reach you even in the restroom. If you wish updates on your child’s progress you may be able to ask the staff to check on it, sometimes a message will be given to you periodically, especially if it is a long surgery.

When your child is out of surgery you will be notified and will have an opportunity to speak to the doctor. Sometimes this is a quick chat in the waiting area, sometimes it is over the phone, other times you are escorted to a conference room. These are doctor preferences and do not mean the conversation is bad or good news and I am sure if you requested a personal conference room the doctor would grant that request. If surgery is outpatient, you will be able to go back to recovery once your child has awakened and had something to drink to sit with them while the anesthesia wears off. If your child’s surgery requires an overnight stay you may be given the room number and be asked to proceed to the room and your child will meet you there shortly. Remember that you are on hospital time and shortly means as soon as we feel your child is well enough to be moved and could be an hour or more.

If you are having same day surgery, stay as long as you feel is necessary in the recovery room. Ask nurses as many questions as you can think of to ensure that you will know what to expect at home and when a call to the hospital or your doctor is warranted. For an overnight stay understand that you will most likely get little to no sleep, my son is notorious for getting wires moved and causing his monitors to beep hourly or more frequently. Know when shift changes are so you can ensure you are in the room to meet the next nurse, ask if they have any questions as many nurses are curious about what brought you to the hospital and what you hope to gain from the surgery. Know where to get food for yourself and if you have to leave your child alone stop by the nurses’ station to let them know you will be back shortly. Know your child’s medications and their individual schedules, some like antibiotics require strict doses, others such as pain medications typically are as needed at least so many hours apart. If you don’t think your child needs pain medicine on schedule ask if it can be delayed. If you feel your child is not being helped by the pain medicine, let your nurse know so they can ask about alternatives. You know your child and how they show pain.

When you come home with your child make any adaptations necessary, ensure you have their medication on hand and know the dose schedule and make any follow up appointments with their doctor. Recovery does not end when you leave the hospital but you may be surprised at how quickly your child returns to their old self.

 

Submitted by: Meshell LaBaun

 

Take 5 Minutes and Recharge

At night, I’m generally pretty exhausted, but it’s not always easy for me to sleep. I lay there trying to think through all the ways my two girls could get hurt, how I could respond to each of these situations, and whether I would even be able to help them. Most of these scenarios are somehow related to their disabilities, so there may only be only a certain number of things that I can do within the realm of possibility for them. The one that keeps me up most frequently is the fear that they will fall down the stairs. You may not have the same worries as me, but you may resonate more with the fears that other moms have expressed to me:

 

  • Will my child ever make friends or fit into a group?
  • At what point will my child realize her or she is “different “?
  • Will I always be able to care for my child?
  • What if I see a medical issue but the medical professionals won’t or can’t do anything?
  • What if the disease progresses to a point that his or her body starts shutting down?
  • What will he or she do without me?

 

Lots of things to worry about, only so much time to think about that AND everything else. That can be exhausting without bringing in the day-to-day routines of actual caring for your child.

Well-meaning people (and magazines) who may not understand try to give helpful advice to help decrease our stress level. “Get some exercise,” “Meditate when you wake up,” “Grab 5 minutes by yourself to recharge,” “Go out on a date night.” This is generally great advice, but easy platitudes like this aren’t useful by themselves because they don’t address the obstacles that keep us from taking advantage of that advice. We don’t exercise because of our exhaustion. We would meditate if we could remember, which we can’t do because we’re so tired. And you’re joking if you think 5 minutes is going to help us feel better. If we could get about 3 days of just laying in bed, that may begin to help, but we also wouldn’t be able to because to be able to get away guilt-free because do you know how hard it is to get a babysitter for a couple of hours, never mind a couple of days? (Breathe!)

Every parent has their own set of worries. This is not a political piece on how our lives are so much harder than those with typical children. Instead, I want this to be a discussion on our levels of stress, and our lack of self-care. Since our kids need a bit more attention, and for longer periods, we have to figure out how to take care of ourselves somehow. We need a plan for support.

We may not be able to get a day at the spa, or even a full day at home to get stuff done, but we can take steps to help ourselves and our families. What government or community supports do you have access to? Respite? Social work? Family or friends? Start making a list of these just to be able to reference. Also, because our families tend to be high needs, it may not always be about getting a break. It may be more about making the everyday routine run smoother. Can you get groceries delivered? Can you afford an occasional cleaning lady? What about freezing dinners for those extra hectic nights? Sometimes, it may be as simple as taking a step back and remembering that these are our children. We take on so many roles (parent, therapist, body guard, nutritionist, teacher, etc.) that sometimes we need to relax, forget those roles, and just play with our child. Those are the memories that they will remember.

I don’t want to bring you down with this article. I do want to leave you with some hope. And here is that hope: as much as you worry, and go through your hard times, you are not alone. We all have, at minimum, this group. Please use us as a place of support. Some of us are lucky enough to also have family close by or the financial support of local agencies for respite or nursing services, and hopefully some of us have good relationships with our children’s therapist(s). And there are those who are just beginning our journey into the world of special needs parenting. To the new families, I urge you to start doing your research now so that you have the support system in place when you need it. Because you will, and that’s OK.

Submitted by Jacqueline Bair

 

The Mom Identity

I was talking with a friend yesterday morning and we were discussing how we almost can’t remember who we were before we were moms.  It seems like so much of our identity has been lost to the needs of our very young children.  And for me, this goes a step further.  I am not just a mom; I am a mom of a child with special needs.  Sometimes, it seems that 99% of my time, my thoughts, and my efforts go toward my children.  Semmes, my typical 13-month-old is in the throes of separation anxiety; not even my husband can make him happy much of the time.  He needs his mommy ALL THE TIME.  I know that this is a short season of his life and in some ways it does make me pretty happy, especially when he sees me across the room, throws his hands up in the air, and moves as fast as his little legs will let him go toward me (I would say run, but that would esteem the movement). I am conflicted with my emotions, to say the least. And with Cooper, my 3-year-old with special needs, it seems like there is always a doctor’s appointment, or a medicine to give, or his oxygen levels need to be monitored, or he’s crying for absolutely no reason, or he’s overwhelmed and needs to go off by himself and lay down.  You know, things that normally aren’t on the mind of a mom of a three and half-year-old. In many ways, being a mom will always be a big part of my identity.  Obviously.  But as my children get older and need me less and go off to school and become their own little selves, I will be less needed and will less identify that way.  Except for Cooper, who at three is the developmental equivalent of a 9-month-old, who will never be potty trained, who is tube fed. I will always be needed with Cooper.  And I will always be a mom of a special needs child as much as I am right now. And some days, this is a hard, daunting reality to face. And some days, I wouldn’t change it for the world. At book club last night, we were talking about how strange it is for us to realize that our parents were PEOPLE before they were parents.  They had relationships, opinions, lives.  And I think it takes having a child of your own to really realize that.  Because you know that you were a person before you were a mom and you know that being a mom isn’t 100% of you.  But when your children are young, it’s hard to remember that.  Some days it’s all I can do to keep my head above water. I’ve realized how important mom relationships are. Finding people who are supportive, who go on playdates, who sit with your special needs child while you change your typical child. I’ve become more choosy, but this choosiness has made the relationships with my friends more substantial. Sometimes, they’re the only way I get through a day and sometimes I’m the only reason they do. submitted by Crady Schneider