families-helping-families-northshore

Fragile XOXO

Mon, 06 Jul 2020 02:30:20 GMT

“Are you sitting down?” is not a question you want to be asked when your child’s doctor calls

to give you test results. I remember feeling sheer panic. My mind jumped to the worst possible conclusions. She then explained that the results of my son Beau’s genetic testing showed that he had Fragile X Syndrome. At the time, that meant nothing to me. I had never heard of it. All I wanted to do was hang up the phone and Google it.

“Is it life threatening? Does it shorten his lifespan?” I asked. I clearly remember when she said no, I felt an incredible sense of peace and relief. “Then what could be that bad?” I wondered.

“Don’t Google it,” were her next words. “You’ll see worst case scenarios and the people you read about may have multiple diagnosis that your son might not have.”

My life was forever changed. I began by doing as much research as possible on reputable websites, like the National Fragile X Foundation, and checking out books at the Northshore Families Helping Families’ office; but none of the information changed the immense love I felt for Beau. What I learned is that July is National Fragile X Awareness month. Fragile X Syndrome is a genetic condition that causes intellectual disability, as well as behavior, learning, and language challenges. Although Fragile X occurs in both genders, males are more frequently affected, and generally with greater severity. At the time, Beau was two years old, walking, but falling a lot, very noisy, but speaking few words, super moody, but also super loving. Over the

next year, as I continued working with his speech, occupational, and physical therapists, as well as looking for guidance and answers from doctors, Beau was diagnosed with ADD, OCD, severe anxiety, and sensory processing disorder. Even with medication, Beau’s frustrations due to his various disorders and lack of communication skills often bring on major meltdowns, including aggression to himself and others. Speech is a major area of frustration for him because the ideas are in his head, but he struggles to express them. He currently uses a mixture of PECS picture cards, signs, words, sounds, and pointing to communicate his wants and needs. With the help of wonderful speech therapists over the years, he is steadily making progress and just last month he gained and kept five new words.

On an even brighter note, Beau can be the sweetest, cuddliest, most lovable child in the world. He loves to hold hands and gives many impromptu pats, hugs, and kisses. He loves being a helper and works extra hard for verbal praise. He’s also really funny and he knows it. Even without many words, he keeps us laughing. His facial expressions and comedic timing are impeccable.

Looking back, I definitely experienced the full range of emotions associated with grief after finding out his diagnosis of Fragile X Syndrome: shock, denial, anger, bargaining, depression, and acceptance. I would also add “guilt” to the list, as I also found out that I had passed the mutated X chromosome to him. I read in a book that it was okay to mourn the loss of the life you had imagined, and that’s exactly how it felt. But you can’t stay in that dark place for long, because it is not changing anything or helping anyone. I battled my way through these emotions with the support and encouragement of friends, family, and everyone who worked with Beau, and I’m happy to say I came out stronger, more appreciative of the little things, more determined to fight for my son’s rights, more patient, and more in love with my little guy than ever.

Beau is now five years old and we are in an amazing place. He will start his kindergarten year in August, in a special education classroom. He loves to be outside and will gladly play with any ball. He also surprised us all by being an exceptional swimmer. We have the unconditional love and support of our family and friends, so many excellent teachers and therapists that have joined our journey to help Beau find success, Fragile X specialists at Ocshner who guide our medical needs, and an awesome First Baptist Church family who welcomed Beau into the Special Friends class with open arms. We pray our way through every challenge and praise God for every victory, no matter how small.

The best advice a special education teacher told me was to keep my expectations high for Beau. That doesn’t mean setting him up for failure, but it does mean that the standards I have for myself as his mother, anyone who works with him, as well as for him are very high. The goal is to help him reach his full potential.

These days, I relish the love, laughter, and silliness that Beau brings into our family and count him as one of my greatest blessings. We are on this journey together and figuring it out as we go. I have no idea what the future holds, but I do know that my son is not defined by his disability and will change many lives for the better, like he has done mine.

The Day Hydrocephalus Changed My Life: Christina's Story

Sun, 14 Jun 2020 02:33:43 GMT

I am a member of the Hot Mess Express. I’m on that train every single day! Some days I’m just a passenger, other days I am the conductor; toot-tooting my way down the track that is my crazy life! I am imperfect, I have baggage; I procrastinate, I am unorganized, stressed. I yell, cry, and am overwhelmed most of the time. Some days I am downright scared! Is it my personality? Is it because I’m a mom of an active five-year-old, or is it my diagnosis? In 2014, I was diagnosed with hydrocephalus, the build-up of fluid in cavities of the brain.

After learning I had a subarachnoid cyst in my brain, I remember lying in the hospital bed and praying, for the first time in a long time. I prayed as I had never prayed before because I wasn’t only praying for myself—I was also praying for my unborn child. I was five and a half months pregnant when I took a trip to the emergency room seeking relief for a headache that lasted more than a week. When I first arrived, the medical staff seemed unconcerned. I’m sure they thought I was just pregnant with a headache. Thankfully they decided to schedule a CT scan, something that is a common protocol for headaches and migraines. I remember the technician asking me why I was having a CT scan performed because it isn’t recommended to have something like this done while you are pregnant.

The technician covered my pregnant belly with several lead blankets to protect my baby and once the scan was complete, I was taken back to my room to await results. Finally, the ER doctor came to my room, but I wasn’t prepared to hear what he had to tell me. The doctor told me I had a subarachnoid cyst taking up ⅓ of my skull and I would need to wait until the neurosurgeon could see me, to find out what my future held.

After finally meeting with the neurosurgeon some hours later, I was informed my cyst was the largest he had ever seen and if I weren’t pregnant, I would have been rushed into surgery. What was going on? I simply had a headache that wouldn’t go away. The reality of my situation didn’t sink in until a few days later and making this situation harder, I was by myself. My husband was away for work and would take at least a full day for him to get to me. This isn’t something you’re faced with every day. I had to call my husband and tell him I had a cyst on my brain that would eventually require surgery. I can’t imagine how he felt once I told him, knowing he was going to have to fly home with worry for his wife and unborn child.

A few days had passed when I finally realized the significance of my diagnosis. I immediately began to worry about my baby. Was I going to have to have surgery while pregnant? Would I still be able to deliver the baby the way I had planned? The first of many specialists I had to begin seeing was an MFM, (maternal-fetal medicine) to check the baby and make sure my cyst has not impacted him. Thankfully, everything was fine and the baby was healthy, so I was released back into the care of my OB. I did, however, decide to wait until my baby was one year old, to have surgery, as I decided I wanted to breastfeed him as long as I could, safely.

Approximately three and a half months after receiving my diagnosis, I delivered a healthy baby boy, without complications. I know God was watching over us during this dangerous time. Although I was grateful for my beautiful, perfect baby, the symptoms of the cyst on my brain only became worse. I lived with continual migraines and dull headaches daily. Thankfully my optic nerve had not become compromised, but this could have been different had we waited much longer to have surgery.

I may never know how this diagnosis has impacted my husband, but he remained strong for me throughout all the numerous doctors' visits and even the surgery when he had to leave the same night to go back to work. He stayed so strong, but I knew that night he was scared. It was July of 2016 and time for my impending placement of a Ventriculoperitoneal Shunt, to release the pressure building on my brain. I was scared. I had never had surgery before, much less brain surgery. I was worried about how long my recovery would be and I had no idea how I was going to take care of myself and my one-year-old child.

The surgery was horrible; there is no other way for me to say it. The surgery itself went fine but recovery didn’t go as planned. I was supposed to be in the hospital overnight, but I wasn’t discharged until three days after the procedure. The neurosurgeon drained the majority of the fluid from the cyst which caused negative pressure in my head. My body wasn’t used to not having the fluid, so this was a major contributor to my pain. I also had an adverse reaction to the initial pain medication and was physically sick for the first 24 hours; leaving me behind the curve in pain management. The recovery time was supposed to be two to three weeks—my mom was with me for eight.

Physically, mentally and emotionally I was drained. I didn’t leave my bedroom for the first week. I was in physical pain, but I was also in so much emotional and mental pain, I felt alone and broken. I felt like no one could relate to what I was going through. I forgot through empathy, sympathy, compassion, and love, someone could listen to you and care about you. Fear and doubt began setting in, trying to make a home in my mind and heart.

I relied on my faith in God to keep me strong during my recovery. I also developed a deeper appreciation for my friends and family, especially my mom. She slept on a twin mattress on the floor of my bedroom so she’d be close if I needed her. She helped me brush my hair, bathed me; cooked for me, and pushed me so I could heal—mentally, emotionally, and physically. She was my primary caregiver for those eight weeks. I know my family wouldn’t have made it through my recovery without her.

Since having a Ventriculoperitoneal Shunt (acting for the natural drain we have, to remove excess spinal fluid and toxins from our brain) placed, my symptoms began to subside. Before surgery, I had a daily, dull headache. It had been that way my entire life. I remember a few months after surgery I realized I didn’t have a headache. Then the next day, no headache and after about a week of that, I realized my headaches were gone and it was an amazing feeling. I still suffer from chronic migraines, but, I’ve learned those are not related to Hydrocephalus or my cyst. One symptom I had, not knowing the cyst was the cause, urinary incontinence, and the constant urge to urinate. I just thought I had a “peanut bladder.” After surgery, the incontinence was gone and the first time I was able to sit through a movie without having to go to the bathroom was AMAZING!!

While I was afraid of having surgery and even more afraid of the consequences of not removing the fluid from my brain, my family now lives knowing we don’t have a subarachnoid cyst lingering in our future. I’m sure I will face future procedures for maintenance of the shunt, but this is normal. For the most part, I can live my life as nothing happened. My son, Robert, knows mommy had had a boo-boo for a while. I told him the doctor gave me “robot parts.” It was the least frightening thing I could think of and it stuck. He knows my “robot parts” are in my head and he needs to be careful when we’re playing around or roughhousing.

Since learning of my diagnosis and having brain surgery, I began sharing my story. In hopes of spreading awareness and helping others. Unfortunately, there isn’t a Hydrocephalus support group near me, but maybe I’ll start one, one day!

Many of my doctors informed me, it’s amazing I had not developed any developmental or intellectual disabilities as a result of the cyst. I can’t believe I went through most of my life not knowing I had a cyst on my brain. However, I know God was in control and watching over my family and me.

A Mom's Journey

Mon, 01 Jun 2020 02:36:51 GMT

Author: Pat Ehrle

Wow! Looking back to write this, I’m thinking that it is hard to believe that so much time has passed since Craig was born and my life changed, dramatically—for the better. Today, I am not the person I was over thirty years ago. I am a mom, an advocate, and have the courage to speak and work toward better lives for individuals with special needs and others who can’t speak for themselves.

I compare my journey to traveling on a crooked, cobblestone road. A road without a smooth, clear path, but a road that is rocky and each turn is unknown, leaving you unaware of your next step or what is around the corner.

I was twenty-six years old when Craig was born. I had a perfect pregnant; not one day of sickness. I felt wonderful throughout. Working a full schedule, completing college courses; with final exams one week before my due date, I delivered a beautiful 8lbs 12oz baby boy—Craig David Blackburn.

I had no idea that Craig was born with Down syndrome. I was in a complete state of bliss and euphoria. Life was great! The next morning was my day of awakening. On his rounds, a pediatrician, walked into my room and told me “he thought” my baby was “mongoloid” and walked out of the room. I broke down and sobbed uncontrollably.

To this day, I still believe I was touched by an angel. An older (probably my age now) hospital volunteer was passing by my room and heard me crying. This stranger came into my room and held me while I cried my heart out and shook with fear. I will always be grateful.

I so loved my baby, but I was confused, afraid and just could not understand how this could have happened; I respected my body, never had a drink or smoked and I ate healthy.

The doctor, who had broken the news, said it would take at least two weeks to confirm whether or not Craig had Down syndrome. In my heart I knew. He had too many of the characteristics for it not to be so. The confirmation was received; Craig did have Down syndrome as well as a very weak heart due to endocardial cushion defect. Craig’s condition was so critical that surgery to repair his heart could not be considered at the time. He was also diagnosed with Hirschbrung’s disease at birth.

Craig’s physical condition was very weak; during the first six months of his life, it seemed like we lived in the hospital. At two months of age, a doctor told me he was not sure that Craig would make it to his first birthday. That was the day our life changed! Down syndrome took a back seat to his being able to survive. Survival was our immediate concern. The first action I took was to contact our family and ask everyone and anyone to pray for Craig.

We learned, through intensive research, at the time, one of the best cardiologists was in New Orleans. I took this as a positive sign from God—and it was! With constant monitoring and medication, Craig took a turn for the better! Surgery for correction of Hirschbrung’s disease occurred when he was two and heart surgery was able to be delayed until four. After both surgeries, there was no looking back. Craig was full speed ahead!

I am sharing these stories with you to help other parents who are struggling with their children’s health issues. For us, a difficult beginning has not equated to a lifetime of issues. In raising Craig, one of the most important lessons I learned, early, was to listen, absorb and then make decisions. I realized that I did not know it all and to take advantage of others who had walked the walk before me. If I could avoid mistakes and make life better for Craig, I needed too.

Shortly after Craig’s birth, I received great advice and literature about raising a child with special needs. I chose to incorporate much of this into our lives. One piece of advice was to avoid negativity and not be your own child’s barrier. This advice helped when I was fearful about a decision that needed to be made. I was not going to be Craig’s barrier. I would permit him to grow and experience, of course, within reason—I am still a mom.

I knew to be successful, Craig needed stimulation and early intervention; I pursued early intervention through the ARC of New Orleans, when Craig was three months old. They offered a program that mirrored a typical school setting, including a full day’s schedule. I knew it was right for Craig, but I was still anxious for my three-month-old baby; however, fears were calmed within a short period of time, as I began to see the progress. The staff were truly devoted to the children and the program.

The ARC was also beneficial for me. I learned how to create an IEP and be an active participant in the process. I also learned what was important for Craig to succeed and although I would not get everything I wanted, to remain strong for his priorities. One of the most important things that I learned was to keep the focus on Craig. It was not about what I wanted or what the school wanted, but what was best and would benefit Craig the most. This has been true in so many aspects of our lives; participating in teams, on boards and even our personal lives. If you lose focus of your goal, everything begins to fall apart. The ARC taught me how to be an advocate and a voice to speak for Craig. If it was going to happen for Craig, since he could not speak for himself at the time, it was up to me.

We started writing Craig’s IEPs at three months old. I always felt a key to Craig’s success was the ability to communicate and this was always the number one priority on his IEP. Craig transitioned into the public-school system at three years old but was in a special education setting without the benefit of inclusion from 3-8 years old.

We attended a weekend parent training conference, where we were bombarded with information; I sat and listened to the presenters, I felt like the messages were being delivered directly to me. I never believed Craig was appropriately placed in a non-inclusive educational environment. Every other aspect of his life, he was included. When the training was over, I felt empowered and excited, ready to meet with school administrators to share what I had learned.

I was surprised to learn, that our school system was participating in a model, funded by a grant. The model was intended to enable individuals with special needs to participate in inclusive environments with a resource teacher who was available to assist others and, therefore, not label the student with special needs. I could not understand how I hadn’t heard of this model and even more surprising, was that Craig had not been approached to participate. I was determined, after leaving the conference, to have these changes made for Craig.

During a meeting to revise Craig’s IEP and discuss my recommendations, I came to understand what the term “roadblock” meant. I was hurt, confused and shocked; not only did the educators, my friends, not agree with my recommendations—they were totally opposed. They were knowledgeable of the model but didn’t believe it was appropriate for Craig and that he would not succeed in an inclusive environment. I left the meeting doubting my judgment for Craig and feeling like the worse mother ever. The message communicated was that I was imposing my own goals on Craig and that he would crack under the stress.

I first cried and then prayed. Something within me, made me know that Craig, being included, was the right path. I was determined and was not going to give up—no one knew Craig better than I did. All we were asking for was Craig be able to try.

I approached two ladies who presented at the parent training conference and explained our situation. They agreed to attend the next meeting with us and would only speak if required. The IEP team met during the same week and their presence was a game changer. Our message was clear that Craig’s team was serious about inclusion. Everyone agreed to give it try for nine weeks and would, again, meet to discuss Craig’s progress and success. Everyone, also, agreed that Craig would be included in the model program.

At 8 years old, Craig was enrolled in a regular curriculum and included. Although he started first grade at 8 years old, the setting was appropriate for his size and mental level. During the nine-week meeting, the team agreed that Craig was making progress and we added, to his IEP, additional objectives that would enhance his success.

We were now familiar with the IEP process and understood the priorities for Craig; as well as, how important it was to understand what was being signed and agreed to. We also knew the goals, objectives and resources he would need, to be discussed and negotiated. As I stated, previously, speech was always number one. We always requested Craig’s IEP be completed and in place at the end of one school year in preparation for the next.

For Craig to be successful, all team members had to believe, be willing to work and ensure the appropriate resources were in place. As parents, we also were not going to just hand off his educational responsibilities to the school; we were going to take over when the school day ended and do what was necessary for Craig to succeed.

We have always recognized how important communication and language are in dealing with others and tried to place emphasis on what was in Craig’s best interest—not what we did or did not want. We tried to remember; meetings are a negotiation process and priorities need to be decided before entering the meeting. Craig was the ultimate winner. Our goals for Craig were first, he would be happy and next he would be the best that he could be; we wanted him to be an active participant in his classes.

I realized how important it was that Craig be recognized as a part of the school; so I became involved and conveyed the message that Craig’s family was willing to do their part. I volunteered as a room mother, volunteered for events and parties and was active in the PTA as either a member or on the board. I wanted Craig to have every advantage in life so as his advocate, I needed to be educated on various subjects that would impact his life. I became involved in organizations related to individuals with special needs, attended workshops and conferences and took advantage of opportunities to become more aware.

A life changer for me was Partners in Policymaking (PIP); after PIP, I truly understood what we were advocating for was our children’s civil rights— rights to which they, like everyone else, were entitled. PIP was a powerful resource. In 2004 Craig attended the training and graduated from PIP. As his final project, Craig chose to become a motivational speaker and today is able to give back to others as they have given to him.

Craig was active, his whole life, in and outside of school. We always remembered the advice to not be the barrier in Craig’s life; to allow and encourage him to try. We were always aware that Craig had special needs, but that was not who he was. He is a person first and that’s how we treat him.

Craig was included from the very beginning of his life and in every way that any other child without special needs would be. Craig wanted to be a manager of football in middle and high school. We told him it was good with us, but he needed to approach the coaches; he did, and this made a difference in his inclusion in school. The academics of high school were extremely challenging for Craig, our family and the team; but everyone continued to remain committed to supporting Craig in achieving his goals. He had to spend time in the evenings, on weekends and during breaks to stay on track in school, but his motivation was to graduate in 2000 with his classmates. Four years after Craig graduated from high school, we learned there had been non-believers on our team who thought that Craig would not meet his goal to graduate.

Craig was going to give his first motivational speech in Alexandria at an educator’s conference, where we were surprised to learn the St. Charles Parish Special Ed Director was going to introduce him. Ms. Yvonne Adler had been with us from the very beginning of Craig’s education. She was one of the barriers, but once Craig proved himself, we believed Ms. Adler was a supporter. She did support us but was fearful Craig would reach a plateau and not earn a regular high school diploma. She was not being unkind, but fearful for Craig and us. She began her introduction by explaining her fears and then stating she had been the one who was wrong—yes, she used the word wrong.

She said through Craig, she saw how hard work and a strong support system can make a difference. She then stated her approach with parents of individuals in Special Ed changed and she now encourages them to work hard and push the educational systems to do the same for their children. Sitting in the audience, tears streaming down our faces; we realized this was the first time, since Craig entered first grade, an educator verbally expressed that we had made the right choices for Craig. Needless to say, Ms. Adler is a very close friend today. We will always be grateful she had the courage to recognize, parents can be right in the choices they make for their children with and without special needs.

Craig’s graduation was one of the happiest days in his and everyone who supported him, lives! Again, to our surprise, the guest speaker mentioned Craig as an individual who never gave up and, in the end, reached his goal to walk across the stage and receive the diploma he earned. We told Craig, his whole life if he set a goal (reasonable), took all the steps to achieve the goal— we would support him. One of these goals was independent living. When he came to us and said he was ready to pursue this, we took a step back. What we promised was here; today was the day! We had told Craig that living independently was an achievable goal and he did everything we asked. There was no recanting this promise— so we started house hunting.

Our prayers were answered when we found a condo, centrally located and about 30 minutes from our home, with security. We knew immediately we were being given a sign, and this was it! Craig became a homeowner, has lived independently for almost seven years and loves it. Craig does not drive so the NOW Waiver provides him with transportation. He has his own set of friends and activities and is close to work.

Craig met a young lady, seventeen years ago at a National Down Syndrome Society (NDSS) conference in St. Louis, Heather Hancock who was from Oklahoma. A beautiful friendship which blossomed into a love story came into being over the years and nine years ago, Craig proposed to Heather. On June 7, 2016, in the St. Thomas, Virgin Islands, they made a commitment to each other to spend their lives together.

After working for Winn Dixie for 18 years, in 2017, Craig came to me and said he needed a change and wanted his dream job; to work for either the New Orleans Saints football team or the New Orleans Pelicans basketball team. I knew Craig would have a challenge making it through the typical application process so, together, we composed a letter explaining Craig’s accomplishments and his desire to be the best worker he could be. Six weeks later, he had an interview. The skills he acquired in middle and high school on the sports equipment team benefitted him by earning a position on the equipment team for the New Orleans Pelicans NBA basketball team. Every day Craig looks forward to a career, not a job, that he truly loves.

Craig has had so many opportunities in his life, but he has also worked very hard for them. He is truly a wonderful, caring son and person. It is because of his belief in life that everyone has something to offer that I believe others relate to him. My journey is not close to being over as we will always support him, but the efforts required are much less. Craig advocates for others and himself which is great because, as parents, even though we talk the talk, we will never walk the walk as our children do.

I go back to what I said in the beginning; “others have walked the path before you, be willing to take advantage of their lessons learned so your journey is on a straighter road.” Remember, to not judge your child’s success based upon another’s; set your own goals for your child, let them set their goals and work toward them.

The path is crooked and not always clear. The journey is tough and, I promise, you will be so tired at the end of many days that you don’t know how you can go on; but never give up. There will never be a path that is more rewarding, and you will truly understand why you have taken the path you have. To quote my favorite motivational speaker, Craig, “Success Does Come In Trying!”

I wanted to quote you all in the article, so I've been FB stalking you... haha Do you mind if I use "How could anyone believe our daughter's life was not worth saving simply because she has an intellectual disability?"

How Anxiety Controlled My Happiness

Fri, 15 May 2020 19:27:10 GMT

How Anxiety Controlled My Happiness

I’ve recently noticed a lot of posts on social media concerning depression and anxiety from fellow moms and organizations.

This isn’t coincidental , it’s God telling me it’s time to open up and share more of my story. “Caregiver burnout,” “do you fear something will happen to your child;” “do you feel like you’re a bad mom?” I’ve been there and I’m still living with these questions. This is part of the reality of my life and anxiety impacts me everyday and my experiences haven’t been easy to talk about, much less share. No one wants to talk about the bad times, but I am compelled to; as I’m committed to being open and honest about my postpartum anxiety (PPA) diagnosis and my life as a special needs parent. I am not the only mother and caregiver who has rough patches. I hope by sharing my story I am able to help other mothers through theirs.

I’ve struggled with general anxiety for many years. I’ve been prescribed medication, gone through therapy/counseling and have learned ways to cope with and manage the anxiety. Prior to my triplets birth, I had a healthy management over it. Well, January 29, 2017 (the triplets birthday) changed from managing and coping with my anxiety, to being completely out of control. What was worse, the anxiety I was experiencing was different than I was used to.

After the babies were born, I physically couldn’t go into public because I had developed a crippling fear of germs (germaphobia), causing me to become obsessive about cleanliness. This fear was so real, I had become completely isolated— even from my family. I struggled with allowing people to come into my home to help me with the babies, because I was scared of what germs they would (not might, would) bring into my home.

Coldon, who has Trisomy 21—Down syndrome, was still in the hospital when the anxiety had complete control over me. Having a premature baby who has a disability that can make them more “immunocompromised”, only escalated my fear and increased my anxiety. I honestly don’t know how many bottles of purell I kept on me at all times and how many times I would use it. I know it was alarming, because I would get looks from anyone who saw me with it. The smell of Purell still reminds me of the NICU. It is etched in my brain and I’m sure every time I sanitize my hands, I will think of our time in the hospital.

Prior to giving birth to the triplets, I didn’t think twice about germs. I washed my hands and went on with life; I wasn’t afraid to touch a door handle or someone's ink pen. The time I spent in the hospital before the babies were born, our country was experiencing the worst flu epidemic in decades—I wasn’t fazed by it. So, did something traumatic happen to me? I gave birth to triplets, I wouldn’t consider that traumatic; life changing and scary, but not traumatic. Was Coldon’s Down syndrome diagnosis traumatic? Some might say yes, but I’ve only felt a peace about it. What I experienced while the babies were in the NICU left me scared.

I witnessed things I never imagined seeing in my life, sounds I will never forget. Babies addicted to drugs, screaming because they were coming down from drugs; babies who had MRSA, one in a crib next to Coldon, only separated by a curtain. Babies who required constant resuscitation; we knew when this was happening, because the alarms sounded different and nurses were running. To this day, I can’t listen to any of those noises when Coldon is in recovery post surgery. Another baby even contracted Chicken Pox while my family was in the NICU. We were thrown into an infectious disease nightmare, with one week old, premature babies. Finally, one image I can never forget; tears flowing down the face of a new mother, as she was saying goodbye to her baby who had passed away. Sadly the baby was born too premature to survive. Even as I’m writing this today, I have to slow what I’m doing and take time to remember the mother and her loss.

This is a reality most triplet moms have to face, soon after learning we are pregnant. We are greeted with “congratulations, you’re having triplets and you’re about to begin the toughest fight of your life.” I was informed the day I found out we were having triplets, they are high risk for brain bleeds, severe brain damage and a myriad of health complications if they are born to early, “so brace yourself, because this pregnancy isn’t going to be a beautiful exciting moment of your life; it’s going to be a fight to save your babies lives.” When you’re pregnant with triplets, the doctors make sure you are made aware of possibilities you most likely wouldn’t know existed if you were pregnant with one baby. So here I was, recovering from a fight that had crippled me, out of fear for my babies lives, watching a mother grieving my nightmare.

By this point I had spiraled out of control; simply breathing scared me.

Living like this isn’t normal, isn’t healthy and it wasn’t realistic. I knew I had to get help, so I reached out to my doctor, who prescribed the anxiety medicine I was taking. However, instead of addressing the problem, my dosage was increased and I was sent back to my germ fearing, anxious, out of control life. Somehow, by the grace of God, I had been managing my anxiety enough to cope day-to-day, but it wasn’t going away; I was simply covering it up and slowly, the medication was killing my spirit.

Fast forward to April 2019, since our time in the NICU. The babies were older, life hadn’t gotten easier, but the challenges changed. The babies were becoming toddlers and were becoming more independent, allowing me a little extra time to focus on myself. Enduring a triplet pregnancy wreaked havoc on my body and I still didn’t feel like myself; so I had a complete hormone and blood panel drawn to make sure I wasn’t experiencing deficiencies or metabolic changes. Surprisingly, everything came back normal, so why didn’t I have emotions; why couldn’t I cry when I needed too? I felt like I was watching my life in a dream, unconnected from my body. After numerous appointments my doctors were listening to me. My anxiety was building and compounding on me, to the point my family was starting to feel the ramifications. I knew at that time, things weren’t going to get any better, because I was facing Coldon’s fourth surgery—hospitals, the birthplace of my nightmares..

As you have read a fraction of my experience, since you’re still reading, you probably understand, I don’t do well in hospitals. I become anxious when Coldon simply has a routine doctors appointment, so naturally I go into infectious disease clean-up mode when we have to spend the night in a hospital. Typically I go through two or three containers of Clorox wipes,after wiping the entire room and every surface in it, down. I also have a scripted (in my mind) conversation with each nurse and doctor who comes into our room; not only do they have to wash/sterilize their hands, I request they wear gloves. Any component they have to touch Coldon with must have a glove or some sort of barrier over it. I even ask them to put a glove over their stethoscopes. Sometimes I get weird looks or remarks made under their breath, but they have always been accommodating. Usually, they feel sorry for me because I am so paranoid and anxious, yet I’m sitting in a petri dish. Sidenote, the most recent surgery was the first time I didn’t feel like I had to clean the entire room and I didn’t ask any of the staff to take extra precautions when they were examining Coldon; huge progress for me!

Coldon was diagnosed with obstructive sleep apnea and had surgery last year to remove tissue blocking his airway. The surgery was very successful and we left the hospital without extra germs. Life was running smoothly. However the tissue his doctor removed grew back, so we were staring down the barrel of another surgery to clear his airway and another night in the hospital. I felt like I had a handle on my anxiety and was under control, but I couldn’t have been more wrong. This time, I wasn’t battling anxiety and fear, I was battling an overly confident, unqualified nurse who refused to listen to me causing Coldon’s pain to remain out of control and my anxiety to spiral.

I am used to advocating for Coldon, but I have not had to fight so hard for him until this instance and I felt like I didn’t fight hard enough. He shouldn’t have had to endure the pain as long as he did and I still feel like a horrible mother for holding him down and forcing him to take the medication orally. Many will try to tell me not to beat myself up over this, but I’m afraid it’s going to take a little longer for me not to think about the way he was screaming in pain while I was holding him against his will.

Coldon was traumatized and I can’t begin to think of words to describe what I felt that Saturday afternoon. Thankfully, the staff did a tremendous job in the remaining time, but we had to endure an additional night in the hospital. This experience was exactly what was needed to push me to my breaking point. Coldon wouldn’t eat; you couldn’t show him a syringe, spoon or mask for a breathing treatment without him becoming hysterical. By this time I was almost numb and each time we tried to give Coldon his medication, I became more and more frustrated. He couldn’t help what he was experiencing, he associated all the things we were trying to make him do with pain. My heart was breaking because my emotions were so out of control and the only thing I felt was anger and frustration because he just wouldn’t eat and take his medicine. This sounds ridiculous, but for the first time Coldon’s diagnosis caught up to me; all the frustration and anxiety I had pent up from his feeding difficulties began weighing on me to the point I was angry. Why couldn’t he just eat?

I saw Coldon’s disability for the first time and I didn’t like the way it made me feel. My precious, beautiful, strong little boy is perfect and for the first time I saw a flaw and I was angry. I was angry because I had let my anxiety overcome me, that I couldn’t control how I reacted when Coldon was struggling. I finally told Jay he was going to have to handle the medicine, because I couldn’t fight anymore. Finally on the following Monday morning, I decided it was time for me to not only seek help, but to demand help. I got up without waking anyone, packed an overnight bag and took myself to the hospital. I texted Jay to let him know I was ok and where I was.I knew he would talk me into staying home if I had woken him and that nothing would change.

I was humiliated at the thought of having to bring myself to the hospital, but I was there… where anxiety becomes depression; where the up-hill challenges become a mountain if you don’t choose the correct path. Humiliation was the last thing I was worried about that morning. I needed medication to calm my anxiety for once in several months, I needed to rest and a few people needed a wake up call. While the ER was of no help, the social worker was. Remember how I mentioned none of my doctors were listening to me, well one of those doctors was my Psychiatrist. After telling the social worker a very brief version of my story, she immediately set up an appointment with a doctor her daughter saw.. She couldn’t say enough positive things about this doctor and I was simply grateful to get an appointment less than two months out. I was currently searching for another Psychiatrist, but unfortunately there aren’t many of them and the few we have are so overwhelmed with patients, it’s almost impossible to get an appointment without a long wait.

This was it, this was the help I needed—FINALLY! I went home to a receptive and supportive husband who suggested I take a trip to the beach, to continue to rest and literally unwind. I went for a few days and came home in a much better place. It was hard while I was away, because I felt like I had left my family; I had let my children and my husband down. Although I felt this way, I didn’t feel like I had abandoned them. I was coming back, but I had to step away so I could be the mother and wife they deserved and needed me to be. I came home recharged and eager to work with Coldon again, the way I was eager to help him overcome his feeding challenges. I was eager to hold, hug and love my most precious blessings and I was excited to come home to my husband who needed me to be the strong, in-control woman he once knew.

Since this breakdown, I have met with the recommended Psychiatrist; I’m on a healthy path and am recovering from my regression. It’s an amazing feeling to be able to say “I am looking forward to tomorrow, to seeing those three beautiful faces in the morning.” When anxiety and depression have a hold over you, saying something like this seems impossible. I am far from a strong woman and mother. Revealing this story isn’t easy for me, but I want other mothers to know it’s ok if you feel anxious or down, it’s ok if you are finally coming to terms with your child’s disability; it’s ok if all you’ve been able to accomplish today is feeding them three meals on the floor in front of the T.V., and it’s ok if you feel completely burned out and want/need a break. BUT… What isn’t ok is when you’re screaming for help and no one is listening. What isn’t ok, is if you are seeking help and your doctors aren’t listening to you and prescribe the common medication that is furthest from the right one for you. What isn’t ok is if you are pushed to your breaking point and things don’t change.

Through many years battling anxiety, I have learned therapy is an incredible tool and although you may need medication to help you get through the tough times, you still have the potential to learn how to manage and cope with it; allowing you to live life with it controlled instead of it controlling you. Most importantly, I have learned to lean on others for support. I have found my greatest allies and support systems through Facebook groups. As much as I wish I could say I’ve met these people elsewhere, it is what it is and I wouldn’t have ever met these incredible women without it. One constant I always rely on is their support and when I had to check myself into the hospital, because my doctors wouldn’t listen, I called two of those women—because they’ve been there and they were listening.

If this is the only thing you remember from my story, remember this: YOU AREN’T ALONE! God has always provided a hand to pick me up and it’s my support system; my triplets sisters, my DS tribe. WE AREN’T ALONE and through support you can find love and help.

Dad Behind the Diagnosis

Sat, 09 May 2020 19:28:51 GMT

Dad Behind the Diagnosis

When you become a parent, it changes you. But when

tiny, brand new baby is given a life-altering diagnosis that thrusts you into the world of special needs, it really changes you.

Some people change for the better and some change for the worse. Your relationship with your spouse can get stronger or it can fall apart. The first few years of this new life will reveal that change. Slowly, but surely, you will see it developing; in the end, many husbands and wives make it through the rocky path. They learn to navigate their new life together and their relationship not only survives, it thrives.

In these relationships, 98% of the time, the mother ‘s life revolves around a child with special needs. It is usually the mama who takes them to their doctors appointments and therapies. The mama packs her bag and stays by their child’s side for hospital admissions. The mama will often leave her job to stay home and care for their precious child, and it’s usually the mama who keeps everyone abreast of their child’s health. It is the mama who openly expresses her feelings about living a difficult, yet wonderful life.

However, when your relationship is strong and makes it through the ups and downs, it’s the Dad behind the diagnosis who becomes a different man. He will become someone you will love exceedingly more everyday. He will listen more and learn patience. He will begin to see things in your everyday lives, with new eyes. He will think more with his heart rather than his brain and his new eyes will fill with tears at the sight of your beautiful, miracle child, when they’re doing something ordinary; something he or she was never supposed to do. All of these changes happen because your child was born with special needs.

The mama is usually the one seen crying, as she has endured yet another blow of bad news from the doctor. It may seem like the mother carries most of the load, but nothing could be further from the truth. The dad is often overlooked. A majority of the time, dad is working— a lot. Most likely your family’s finances depend on his paycheck, but he finds himself wondering how his child’s day is going, more often than not; and when he isn’t working, he’s taking care of the home front and your other children.

What you don’t see from dad, unlike mom, are his emotions. They are hidden by a strong face and he rarely lets his emotions loose, so he cries alone when no one is around. Much of the time, he wishes he was at all the doctor's appointments; hearing the news and new information from the doctor, because he wants to know everything too. However, he usually remains silent about his frustrations about this life, because he has learned to cope with it differently than mama has. This is often why most forget about Dad; his role is equally as important, just less emotional and more silent than mama’s.

Something else we don’t see is his heart aching for his child, as his mind swirls with thoughts of “what was supposed to be.” He thinks of how life should be with his child, playing catch in the backyard, not lifting him into bed at night, because he’s gotten too heavy for mama to do it. He thinks how he should be playing dress up and having tea parties with his daughter. Instead he is setting up feeding pumps to ensure her nutrients are given through a feeding tube for 18 straight hours.

Although life is different than he expected, he holds onto hope that his miracle with so many special needs, will get better. He experiences what true love really is, because of his child with special needs; so he accepts this life and puts on a brave smile for his family. He goes to work so they can pay the bills and he is always there to hold his wife when she doesn’t know what to do or where to turn. Dad experiences the joy, the heartache, the love, the fear—all of the emotions. He is willing to go unnoticed, unheard and unseen not because he isn’t equipped to live this special life, but because he is willing to be the strong, silent backbone for his child/children and his wife. He is selfless and puts his own needs and feelings aside so he can power through life and take care of his family.

In a society where moms of children with special needs are often praised, we fail to see the unsung hero behind the scenes. Dad is often snuggling, bathing, giving medications, working so he can allow for his family to thrive. The dad behind the diagnosis may be hidden from your view, but he is there, quietly supporting his family; and doing an amazing job! “Kudos to all those great dads out there who are raising a child with exceptional needs, with their spouse or by themselves! In case you haven’t heard this in a while—YOU ARE AMAZING!”

A Tale of Northshore Families Helping Families

Sun, 05 Apr 2020 19:31:35 GMT

A Tale of Northshore Families Helping Families

In the early 1990's, families partnered with the Louisiana Developmental Disabilities Council to be the driving force that founded & formed Families Helping Families of Louisiana.

It all began at a conference sponsored by the Louisiana Developmental Disabilities Council (LA DDC) in 1988 that focused on community supports and services for people with disabilities. The conference was attended by many young parents who wanted to have full inclusion for their children with disabilities, in the communities where they lived and worked. During the wrap-up portion of the conference, one parent asked for a flip chart, full of great ideas, to serve a purpose besides covering the walls. The Louisiana Developmental Disabilities Council took the challenge, began pilot projects and gathered information to write legislation to create ACT 378 of 1989, known as the Community and Family Support Act.

Through these efforts, 10 Families Helping Families centers were created across Louisiana. Each center is independent, has their own 501(c)3 from the Internal Revenue Service and are governed independently by their own Board of Directors. No center is subordinate to another and each centers independent Board of Directors selects an Executive Director for their respective FHF Center. Each center builds its programs based on the needs of its region, sharing a common mission, philosophy; creation and dedication to people with disabilities and their family member. This is the similarity in all Family Helping Family centers.

Northshore Families Helping Families (NFHF) was established in 1992 and is the only family-driven resource center who serves individuals with disabilities in the five Florida Parishes. Each staff member at NFHF has a family member who has a disability or is a self-advocate. A majority of our board members have a disability or have a family member with a disability. NFHF serves individuals with disabilities throughout the lifespan, from initial diagnosis through adulthood.

Understanding the family as a whole is important; we work to address the well being of each family member and the family as a unit. We understand the challenges a family faces and are committed to reaching out to other families with similar experiences. NFHF gives parents and adults with disabilities knowledge, support and confidence by providing peer to peer support, information and referrals to disability resources, education and training.

NFHF gives PARENTS knowledge, support and confidence.

NFHF connects ADULTS with disabilities to vital resources.

NFHF supports PROFESSIONALS who serve individuals with disabilities.

NFHF empowers YOUTH to become self-advocates.

families-helping-families-northshore

Fragile XOXO

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How Anxiety Controlled My Happiness

Dad Behind the Diagnosis

Dad Behind the Diagnosis ﻿

A Tale of Northshore Families Helping Families

A Tale of Northshore Families Helping Families

Dad Behind the Diagnosis