Posts in: Family
Three Tips to Deal with a Special Needs Diagnosis
By: Michelle Gilliam
As a public relations professional, I am often tasked with producing special events. At approximately 28 weeks pregnant, I was preparing to introduce the new executive director of a local nonprofit when my cell phone rang. My OB was finally calling with the results of my amniocentesis that I had been awaiting for ten days, but I was ready. I knew the beautiful baby growing inside me had Down Syndrome, and I was prepared to love him with all of my heart.
At our 12-week ultrasound, the obstetrician saw an enlarged neck on the tiny fetus I already loved so much. She measured the nuchal fold and brought in a nurse who specialized in genetics to discuss the little baby’s chances of survival. Just five months earlier, I had suffered a devastating miscarriage, and I wasn’t sure I could lose another little one. The nurse explained we had a 33 percent chance the baby had Down Syndrome, a 33 percent chance of a fatal chromosomal abnormality and a 33 percent chance that my child had no special needs at all. My husband weighed the numbers while I cried. It was all too much to handle, but down deep inside, I knew everything was going to be just fine.
My son is now 16 months old and is the light of my life. He is outgoing, loves to smile and laugh and is one of most popular children in his daycare class. When I post photos of him on Facebook , he gets hundreds of likes and tons of comments in minutes. I only wish I had known how much joy he would bring when I first found out he might have special needs. For anyone facing a special needs diagnosis, I have some advice:
1. Do your research: While all of the information about various chromosomal abnormalities is overwhelming, research on various special needs can help when faced with a diagnosis. Within weeks of finding out my son had an extra 21st chromosome , we were already connected with the Down Syndrome Association of Jacksonville and Hope Haven Children’s Clinic and Family Center . Knowing what to expect made coping with a special needs diagnosis much easier.
2. Don’t get discouraged: When a local daycare center wouldn’t accept my baby because of his extra chromosome, I was devastated. I thought I might have to quit working to raise my son. I was very wrong. Most daycare centers were delighted to care for my son, and we enrolled him in one that encourages and guides him.
3. Stay positive: A positive attitude is vital to dealing with the challenges facing a parent with a special needs diagnosis. Before you have had the opportunity to meet your lovely child, it is difficult to wonder what the future might hold yet it is easy to bury yourself in self-doubt and disappointment. When feeling down, remember that your child is unique and wonderful in his or her own way and keep looking towards a bright future. A positive attitude makes every challenge easier.
When I found out my son had a special needs diagnosis, I thought of all of the things he wouldn’t be able to do. Then, I started to meet people with Down Syndrome, and I discovered he would be able to play sports, go to college and get married. I quickly realized that Down Syndrome isn’t a disability at all. It’s just one extra chromosome to love.
Healthy Development: Search Engine Parents Beware!
By: Holly Bishop
When your new baby is born one of the first things family and friends ask is, “How much did she weigh?” Healthy growth and development has such a wide range of what is acceptable it can sometimes be difficult to notice if there is a problem.
As a mom, I am guilty of “Googling” every little odd symptom my daughter has had since birth. I have probably visited more than 100 mommy blogs, health sites and pediatrician’s websites; I even looked for similar photos of rashes in hopes of diagnosing the problem. Something I have come to realize in my first 18 months of parenting is there really is no such thing as “average” or “normal.” Every child is different, thus, symptoms and growth chart levels will be different. The important thing to remember is to weed out the bad information and use your doctor and trust care provider as a resource, when you have concern
Be wary of opinion based information people put out there on blogs and forums or websites from organizations written by individuals that are not medically trained or certified. That’s a hard thing to stay away from, especially while you’re frantically searching for answers on the internet at 3 a.m. While the internet and search engines are a wonderful tool, they can be tricky with information.
While it is important to educate yourself as a parent on the general developmental milestones, health issues and common problems in young children, be picky with the websites you base your knowledge from and always go to legitimate physician based source first.
As always, no matter what any reliable website says, if you as a parent have a gut feeling that something is wrong, take your child to the pediatrician immediately. Most doctors would rather parents be proactive, than wait until things got worse.
A few great sites with quality information:
http://www.Kidshealth.org – Based from Nemours Children’s Clinic and most articles written are from Nemours physicians.
http://www.Healthychildren.org – Sponsored by the American Academy of Pediatrics
Surviving the TERRIBLE TWOS
The “Terrible Twos” have been my hardest challenge as a parent so far. Sleepless nights with a newborn seem like a cake walk compared to the strong willed and bossy little girl I have now. This is the stage where they no longer look or act like your sweet little baby. They turn into these tiny daredevil earthquakes that can destroy a house in less than five minutes. My daughter is not quite two but she is already in the stage many like to call the “terrible twos.” Her preschool teacher refers to her as the monkey because she climbs up any ledge, table, chair, door or wall she can find. Her favorite word is “no,” and she says it with gusto and a finger pointed directly at you.
A friend told me years ago, long before I even had thoughts of being a parent, the “terrible two’s” are only as terrible as you allow them to be. All too often parents allow their children to dictate their lives and their level of happiness or stress. I firmly believe children need reasonable boundaries to develop as well rounded children. Schedules and routines are my trick.
Since my daughter, Mckenli, was about three months old, my husband and I worked together to develop a schedule that helped her transition more easily throughout the day. And we still have the same schedule, with a few adjustments, for our now 18 month old. At bedtime she knows to get her blanket and teddy and go to her little bed. I have no doubt she is a happier child because of her reliable routine.
Part of a toddler’s healthy development is learning their own independence and exploring. Their little minds absorb so much in a single day; it can be overwhelming at times. This often leads to mini outbursts or defiance towards you as a parent or other authority figures. They are simply trying to test the limits and in a way, test how consistent you are with your rules.
So my advice as the parent of a toddler is first and most importantly to be patient. I know this is easier said than done, but toddlers still can’t fully express what they are feeling or what they are thinking. They get frustrated and angry. It’s much easier to be comforting and reassuring than react to the outbursts with discipline.
Also, give your toddler some slack on the “rope” every now and then. Keep a close watch, but let them explore a little more each time you are in a new situation. Constant boundaries, rules and saying “no” can lead to more frustration with an already impatient little one.
Finally, remember you are not perfect. You will make mistakes and there will be good days and bad days. But as you tuck your little ones into bed each night, remember they are looking at you for direction. Show them your love and willingness to learn and change with them as they grow.
Being a parent is the hardest job in the world. But even with a “terrible two-year-old” it is also the most rewarding.
Caption: My daughter Mckenli at 15 Months Old)