There are few "jobs" in this world as difficult -- and as rewarding -- as being a parent. Life and destiny hand you a small human and an unpredictable 18 to 85 years, God willing, to create a kind person and to lay down the foundation for a future that is full of potential and kindness and joy. That in itself is ridiculously challenging and can be incredibly lonely. Factor in a child with special needs and you can feel absolutely alone. I love the idea of supporting other parents and offering a sense of community for those of us who face battles daily and mostly behind the scenes.
Through this new series, "Special Edition", I'm going to introduce you to some of the most incredible parents who are raising kiddos with a little extra something -- an extra chromosome, perhaps, or an extra diagnosis; maybe it's an extra health concern or an extra behavioral setback. These mommas (and dads, too!) are fierce, strong, resilient and willing to give their all and then some. I hope you learn a little bit about them and their children; it is my wish that your eyes are opened and your hearts are warmed. I hope that if you too are facing challenges and difficulties in your everyday life as a parent, that for one brief moment while reading this, you no longer feel alone. Enjoy our new series, "Special Edition."
Tell us about your family!
Brett, Andrea and Riley Haines (Riley turned 5 in March).
Tell us about Riley!
Riley is a 5-year-old bundle of energy just like most little boys! He is attending Kindergarten in the fall. He enjoys collecting items of nature (rocks, leaves, etc.). We were raised on a farm and Riley also had access to his grandparents’ dairy farm to learn and help with chores like feeding calves when he is visiting them. Riley is usually interested in any type of farm equipment or machinery; he also enjoys playing with his toy trucks and trains.
Riley’s personality is happy (most of the time). He’s usually up for an adventure and gets super excited over small weekender trips or a new playground.
What diagnosis(es) do/does your loved one have? Can you break it down for us in super laymans terms? At what age did he/she get diagnosed with this? Would you say this is a visible or “invisible” diagnosis and do you think that makes things more difficult in any way?
Riley is battling an auto-immune disease called P.A.N.D.A.S (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and P.A.N.S. (Pediatric Acute-onset Neuropsychiatric Syndrome). In layman’s terms, it is a disease triggered by strep A bacteria that causes brain inflammation, causing the child to have neuro/psychiatric implications and behaviors.
This is a disease that doesn’t get much attention because there are so many different types of symptoms a child can show that often get overlooked as behavioral or “typical” growing pains. I would categorize this as an invisible disease because to look at him, he seems like a “typical” boy.
Riley was diagnosed at the age of 4 years old by a neurologist near Baltimore (Sinai Hospital) named Dr. Yuval Shafrir. This diagnosis path was very frustrating because we had seen three other doctors before we finally got answers (we were actually lucky, as many families are still searching). One thing that I have learned as a mother is that you should trust your gut instinct and never stop looking for answers for your child because someone, somewhere has an answer!
In our journey for diagnosis, I remember feeling like we were getting somewhere with a reason for his symptoms as we visited a different neurologist. That day was so defeating … the doctor took one look at him, and shot questions at me so quickly that I didn’t even have a chance to go over the carefully written notes I had brought along and said he was “fine”. He was having growing pains and ADHD. I was so very upset, I didn’t listen to her though and I am glad I didn’t because we would have a much sicker child on our hands.
What was your initial reaction to this diagnosis?
I was relieved to get a diagnosis. Many parents are still searching for a doctor that is understanding of this illness.
How does this diagnosis affect everyday life for this child? What are their greatest struggles?
Every day is different depending on his overall environment because anything can kick off the immune system response. His greatest struggles are OCD, controlling his emotions, anxiety, to name a few.
What do you think is the biggest misconception with your child’s diagnosis?
That one shoe fits all. There are children with this disease who are much worse off than our son. Most people think that it’s a voluntary behavioral thing, but it’s not.
What does an average day look like for you and your child?
We get up and start our day with medication and getting ready for either school or errands. Depending on his overall mood/inflammation level we decide what activities are best suited for us/him. It’s not untypical of a regular household, just on off days he might have to leave school earlier.
What areas are the hardest for your child and why?
I would say school, at this point. He has a routine and change is hard for him, but he’s getting better at retraining his brain with the OCD.
Holidays and family/friend gatherings are difficult because they are different and harder to cope. It is also VERY frustrating when a family or friend comes to an event and is sick … they don’t understand that it takes him much longer to get better and his brain inflammation gets worse.
How has your life/ your parenting changed because of this journey?
I’m a lot more anxious about school, getting the call from the teacher/office. I’m more used to it now, but sometimes people look at it as a reflection on the parenting skills and it’s so much more than that. I am a lot more patient when it comes to activities, he has to ease into certain things.
What is your greatest wish you have for your child?
My greatest wish is that even if he does improve or not, that he is able to channel his creative mind to his best abilities…and that he’s happy!
If people would like more information on this, where can they find it?
ANYTHING ELSE! Share whatever is on your heart right here, my friend.
I’ve found that I am not alone in my parenting feelings by reaching out to other parents with a child with PANDAS/PANS, but it can get very lonely and immensely tiring trying to constantly prove or explain to people that my child has an illness they cannot physically see.