5 First Steps to Take When You’re Told Your Child Is Different
The moment you are told your child will not be like other children and will likely struggle to keep up or never keep up, is the toughest, most gut-wrenching moment of your life. I can relate. Read my story for more. I remember hearing expectant moms saying “I don’t care whether my baby is a boy or a girl, as long as it’s healthy!” Well, what if “healthy” is no longer an option? Do you discard the possibility for joy? Some do, but I urge you not to. Here’s an alternate way to approaching a tough diagnosis.
After crying and praying for help, it’s time to roll up your sleeves and assemble a team to support and guide you through this less traveled journey. With the help of a team of experts, you can begin to construct a system and strategy by which your family can find relief and ultimately, joy. This team will take time to assemble, but if you persevere, I promise, all the work will be worth the time and trouble.
1. Find a pediatrician who specializes in medically complex children.
This is a tough one, I found, but really important. I had to replace our first pediatrician for her lack of experience with children that don’t fit the mold. She simply could not direct me to the resources Caiden needed. Besides vaccinating and relaying bad news related to milestones and growth charts, she had little to offer. The next pediatrician didn’t have much more experience, but what she lacked in experience, she made up for in eagerness to help. I could bring her my research and together we could decipher the next move. Although not ideal, a compassionate pediatrician is good alternative while you search for the optimal solution.
It wasn’t until we moved to Greenville, SC and discovered The Ferlauto Center . There we found a great pediatrician to address all of my son’s needs from head to toe! Dr. Cady Williams and the entire staff at the Ferlauto Center and their one-stop-shop approach relieved me of the duty of coming up with all the answers myself. All the patients at this special practice are unique, like my son, and require a custom approach for their complex medical care. On our first visit, I was met with Caiden’s pediatrician, his new dietician and a nurse coordinator. Together, they talked me through Caiden’s next steps, made referrals, walked me through the Medicaid insurance process (a minefield), made new suggestions for treatments and placed orders for new and much needed equipment. This holistic approach helps avoid headaches and lots of wasted time and money! Less stress, more Joy!
Ideas on how to find a pediatrician who specializes in medically complex children:
· Perhaps the best place to inquire about a pediatrician for the medically complex is the NICU or pediatric floor at a hospital you respect.
· We found the Ferlauto Center by asking the school nurse of our son’s preschool, The Meyer Center for Special Children. The special school in your area may direct you to the right path.
· ASK everyone that might know. Social workers, therapists, other parents of kids with disabilities, a developmental pediatrician or other specialist your child sees.
2. Enroll your child in Early Intervention ASAP!
As a matter of fact, you can have your child evaluated and enrolled before you even have a diagnosis. Caiden was enrolled at 4 months old, but enrollment process can begin as soon as developmental delays are noticed or anticipated. Usually, your child’s pediatrician will provide you with a referral to an agency where evaluations can be attained by Speech Pathologist, Physical and Occupational therapist. In our case, my sister is a Speech Pathologist, so she was able to guide me through the process step by step. She put me in contact with a local agency in NYC that provides EI services. A service coordinator arrived at our doorstep, made an assessment, and within a few weeks evaluations were done and therapies were started from the convenience and comfort of our home! I can’t begin to tell you how invaluable these therapists were to our lives. The best referrals, wisdom and advice came from these knowledgeable people. Also, these 30-minute sessions, once Caiden had adapted to the therapists, were a much needed break for this momma!
More helpful information about EI can be found at Understood.org.
3. Specialists to address all your child’s particular health needs.
I believe the first year of life in a child with special needs is incredibly draining due to all the different doctor’s visits. (And if you live in NYC, the stress of parking or commuting with your baby through mass transit could drive you to drink!) Nonetheless, it is vital, that experts on each of your child’s particular diagnoses address each accordingly. For example, Caiden’s main medical issue originated in his brain, so the first special doctor we went see is a neurologist. He became Caiden’s primary specialist and as Caiden’s prognosis became more clear he referred us to other specialists, such as an Orthopedist, an ophthalmologist, a gastroenterologist, and a physiatrist. More than likely, if your child was diagnosed at birth, then the hospital will have referred you to your child’s primary specialist. However, if your child’s diagnosis did not become clearer until later or you suspect your child may be developmentally delayed or something is just not right, follow your gut and find a specialist to address the specific problem. Click here for a comprehensive list of pediatric specialists. Helpful hint-try to obtain all your pediatric specialists within the same hospital system so they can easily share your child’s information with each other, saving you time and trouble.
4. Find a resourceful Social Worker to help you obtain respite or nursing care.
My hope is that your pediatrician will have already connected you with a social worker or nurse coordinator to assist you in navigating the insurance system and get you the REAL help you need at home. One should be appointed to you through early intervention, who manages your case, but depending on fortune, you may get someone who is barely adequate. Here is how we found a great social worker. Once Caiden reached 2 years of age, was still not sitting up or walking and began to have seizures, I needed help! After insisting, our Early Intervention Coordinator transferred Caiden’s care to NY’s Care at Home Program. We then had the choice of several agencies to manage Caiden’s overall care. We chose Compass Case Management. We were assigned a wonderful social worker and human being, Maureen, who brought us the pivotal change from burnout to joy. Maureen, also a mom of an adopted boy with special needs, was able to connect us with a nursing agency and obtain the services of an LPN. In addition, she would visit our home on a monthly basis and assess our needs for equipment and therapies. Maureen compassionately helped us make the tough transition from Early Intervention to Preschool with an Individualized Education Program. She even helped us transfer care from NY to SC when we moved giving us invaluable information about health insurance under The Katie Beckett Fund. This federally funded program allows children to be eligible for Medicaid solely of the basis of disability and not their parents’ income, saving families thousands of dollars in medical costs! Definitely a cause for joy! For more information on the Katie Beckett Fund, see below:
https://www.health.ny.gov/publications/0548/care_at_home_physically_disabled.htm
https://www.nytimes.com/2012/05/23/us/katie-beckett-who-inspired-health-reform-dies-at-34.html
5. Get yourself in a support group of some kind.
So, this is tough! This is one of the main reasons I have started this website, to help others find the support they need. I have searched long and hard both online and in person, and other than some great Facebook groups, I have come up empty. I have traveled to support groups to find locked doors and cancelled meetings. I joined online groups, only to discover inactivity. Once Caiden’s seizures began to worsen, I decided to take matters into my own hands. I invited 3 other moms who have children with a variety of special needs to start a texting group. I’m so grateful they said yes! We encourage, pray and gently advise each other when asked. These texts of love have helped me take small steps forward towards a more joy-filled life!
If you can’t find a group and don’t know anyone yet, perhaps consider talking to a counselor to help you cope through all the stages of grief. Another great option is life coaching. A life coach can help you take steps toward the finding the balance needed to manage the stresses of care-giving, so you can reach your personal goals and start enjoying life again. Maybe, consider making me your life or marriage coach and book your free first session by clicking here? I promise, I won’t bite. ; )
Here are some Facebook groups that have been helpful to me:
https://www.facebook.com/groups/tinysuperheroes
https://www.facebook.com/groups/1855573214536750
If you are part of a group that has helped you please share your experience in the comments below. No matter where you land, make sure you give yourself the time and space to talk, share, and receive healthy solutions to the many challenges you are facing.
Prayers these first steps bring you closer to Joy!