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.
I first met Linda and Sara when my family and I lived in the Wilkes Barre, Pennsylvania area. Linda was one of my first clients and I so loved photographing Sara and staying in touch since then. Linda is so open and honest about Sara’s struggles with behavior and anxiety and I’m grateful she was willing to share her story here.
Tell us about you and your family.
My name is Linda and I'm a single mom to my daughter, Sara Alizabeth (10). We live in Northeast PA in a town that is in between Scranton and Wilkes Barre. I work part time as an administrative assistant for a Heavy Equip Dealership and my daughter just started Middle School and is in 5th grade.
Who are you specifically talking about today?
Today I will talk about my daughter, Sara
Tell us about Sara!
Sara is 10 and is in 5th grade (but has an IQ of an 8-year-old). Sara doesn't have any favorite subject as she dislikes school very much. If there was a subject called “Social Butterfly” that would be her favorite! Sara is always on the go; she loves to be moving around at all times, day or night. She loves to dance, sing and be an entertainer. She has a very straightforward personality and doesn't hold anything back - good or bad. She has a very soft side and is very compassionate and loving, especially to others that have a disability or elderly people.
Her favorite hobbies are hip-hop class, riding her bike, swimming, ice skating and jumping on the trampoline.
What diagnosis(es) do/does your loved one have?
Sara was diagnosed with ADHD, Generalized Anxiety Disorder and BIF (Boderline Intellectual functioning) in November of 2017 when she was 8 years old. Borderline intellectual functioning, also called borderline mental retardation (in the ICD-8), is a categorization of intelligence wherein a person has below average cognitive ability (generally an IQ of 70–85), but the deficit is not as severe as intellectual disability (below 70).
I would say it's 50/50 visible/invisible and yes, now that we are back to school it makes the % go up to about 70/30 visible/invisible.
What was your initial reaction to this diagnosis? What was your greatest fear?
My initial reaction was a sigh of relief that she would start getting the help that she needed since she was 4 years old. My greatest fear is that she will never be able to live a "normal" lifestyle. What I mean by that is the constant reminders and redirection that she needs on a daily basis -- everything down to reminding her about personal hygiene, cleaning up after herself, etc. etc.
How does this diagnosis affect everyday life for this child? What are their greatest struggles?
Sara is constantly all over the place -- she will start an activity and become bored or distracted and move onto the next activity and never pick up from the first. She struggles the most with staying focused and sleep is a huge issue as well.
What do you think is the biggest misconception with your child’s diagnosis?
That she is a spoiled only child and is being a brat just to get her own way.
What does an average day look like for you and your child?
I wake up at approximately 5:30 to start my day prior to waking her at 6:45. I know the minute she comes downstairs, all of my chores and my daily routine needs to be complete because she needs my full attention in order to get to the bus stop by 7:45. Once she goes to school I go to work part-time for 5 hours a day and then she arrives home at about 3pm. We then have a snack and some playtime with the dog and then it's right onto homework. After homework I cook and clean up and then she could play until 8:00. Then her bedtime routine starts and she needs to be in her bed laying down by 9pm. I then do whatever chores that need to be done and go to bed around 11pm.
What areas are the hardest -- everyday functions, education, employment, behavior, etc -- and why?
Oh boy! This is a tough one - I'm struggling right now with all of the above. Trying to get back into a routine is very hard and as summer just ended and we didn't have structure or set schedules during the summer months it's very difficult trying to get back into the swing of things.
Her education is my main concern and I question myself each and every minute of the day, whether or not I should have held her back in the 4th grade. Actually, I have been doing this each and every year since she started Pre-K at 3.5 years old.
Sara's behavior has improved tremendously since we finally found a medication that works for her.
What is your greatest wish you have for your child?
For Sara to continue being the caring, compassionate, and loving child that she is and to always strive for the best that she is capable of doing.
If people would like more information on this, where can they find it?
I belong to several support groups on facebook:
ADHD/ADD/ODD/DMDD parent support group for children 16 and younger
Moms Of ADHD, Anxiety, ASD, ODD Kids (Support Group)
BIF support group