February 12, 2023
Good morning, Church. I want to first thank Pastor Luke for giving me this platform and opportunity to give and receive support.
I approached Pastor Luke a few months ago about using the church as a meeting space for a support group I had envisioned. Those of you that have had personal conversations with Pastor Luke know it went something like this “Pastor Luke, I want to st…” and he interrupted me and boldly said “Yes, whatever it is, yes”. I laughed and said, “you don’t even know what I was asking” and he must’ve trusted my judgement, and just said Yes.
That brings us to today. I’ve been asked to share my story. So, here it is. Once upon a time, I was a perfect parent. Then, I had children. The end. I promise you will see how that ties in. On a serious note, I’ve been asked to let you know who our family is, and what burden we carry. I want to ask, how many of you in this congregation either HAVE, KNOW or LOVE a child that has *High Needs*? This can mean ADD, ADHD, ANXIETY, OCD, AUTISM, SPD…. the list is long. Please raise your hands if you fall into a category like this. It is a sad comfort to not be alone in this. This issue is widespread, and is not affected by your income, housing, education level, etc. What it is affected by is your access to resources to address it. Mental illness diagnoses only become a tragedy when society fails to provide the things needed to lead one’s daily life. That is where I hope to help in my very small way, and hope that sharing my brutally honest story might help a family out there.
My daughter was born via c-section and was a healthy baby. Looking back, we always knew her needs were higher. We called it colic, or being fussy, but as she grew and could communicate, we realized it was likely more. As a very young child, her disposition was often extremely inflexible, and full of what we then thought were normal anxieties of a child learning the world around them. However, a move from North Ridgeville to Medina proved to be an event that sparked a level of anxiety that could no longer be passed off as normal. Anger, emotional dysregulation, anxiety that manifested in picking nails until they were bleeding, coming out of her bed incessantly all night long and many other presentations set in. Then the event changed it all forever. You are probably thinking I am going to divulge some huge trauma or event that is unthinkable. See, that is how anxiety can be so wild and strong and trick your brain into believing these heightened senses of reality.
The event was a child in kindergarten vomiting in the classroom. Now, who here likes to throw up or watch someone else throw up. No one, of course. My child came home from school that day and told me her friend had thrown up in class. She was visibly upset by it, and it consumed her conversations for the next few days. It wasn’t until she was screaming in the drop-off line and I was carrying her into school that I realized we had an issue. It had been months, and we were exhausted, her the most. I called the Pediatrician and was referred to a University hospitals psychologist. That event began the 6-year journey that we have embarked on. A comprehensive neuropsychological evaluation diagnosed anxiety with OCD features and ADHD. Those diagnoses can unpack a lot out of those few letters.
What has this looked like and how has it impacted our home? I always describe it as similar to what I imagine living with a drug addict or alcoholic might be like. The family circles around the “sick” member of the family. Everyone takes on a role. Mom and dad live in a spirit of help and recovery for the sick family member, other siblings take on roles such as “the glass child” a term we have learned in counseling. Holidays, vacations, weekends, sports, there is nothing left untouched in the wake of something this profound. School drop off, for months at a time, would be my child running from me yelling “I can’t go in, what if I throw up!”. Evenings at home were full of literally hundreds of questions of “do you think I’m sick, will I throw up, my stomach hurts”. Nothing is “normal”. Every moment is now intentional. The flow that most families enjoy as organic is not our experience. Finding connection with your child is much harder, and therefore impacts the relationship. Add to that ADHD can cause impulse control issues and emotional dysregulation that causes anger and frustration. These children need the most love and will ask for it in the most unloving ways. It takes skill, patience, and empathy DAILY. We face constant worries of how will this child be ok later in life; one day she will need to be without us. A parent is not only a person to lean on, but a person to make leaning unnecessary.
In the 6 years that we have been at the meat of this struggle, she has battled her own labels. We, as parents, are not shielded from those labels. After all, everybody knows how to raise a child except the people who have them.
When she was young and we would tell family or the pediatrician we were concerned, she was labeled “willful”, and we were labeled “new parents”.
When she would be incredibly impulsive with both her words and actions, and would misbehave at a holiday or playdate, she was labeled “a bad kid” and we were labeled “too permissive”, or “bad parents”.
When she was old enough to understand the external judgment, she formed her own label by asking” Why did God make me this way?”. Her label was unworthy.
When she started asking hundreds of times if she would throw up or cried and screamed for months on end at school drop off, she was labeled “weird” and we were labeled “the parents of the weird kid”. What must be going on in that house? I can’t have my child around that”.
In all of these labels, you have well intending individuals around you making “suggestions” or trying to “solve” your problem. To all of the unsolicited advice we’ve been given, I say “unless your parenting advice is which wine pairs best with 3 weeks of laundry, keep it to yourself”.
We have walked away from friendships because of those labels. We have missed events because of those labels. We have questioned ourselves as parents and humans many times because of those labels. I am proud to say today that the only label I carry is that of a mother who will never give up on her child. That is why I am comfortable to share this story with you.
So, why am I sharing? Well, for a few reasons.
Statistically, do you know that over 5.6 million kids had been diagnosed with anxiety diagnoses and 2.4 million had been diagnosed with depression in the year 2020 alone. This is pre-pandemic, meaning these numbers are severely inflated today.
Do you know that most pediatric counseling has a 4 to 6 month wait? And even at that, weekly sessions take months in and of themselves to make significant progress and impacts on the child.
Did you know that 13.6% of US children between 5 and 17 years old had received mental health treatment, and 8.4% had trialed or were on prescription medications?
Do you know the burden that parents of High needs children face? Judgement from others on parenting, isolating, depression, guilt (oh the guilt), expenses (a counseling session for us is $25 co pay per session alone, not to mention lost wages, medications etc.), the lack of guidance once a diagnosis is given, the impact it has on the family unit, the marriage, the relationship with the struggling child. The burdens are many. My mom once said to me that my child and I are both being cheated out of the natural joys and experiences of childhood.
I am sharing my story in the hopes that starting a support group for all parents or loved ones of children impacted by mental illness can have a space to be vulnerable, to feel safe and supported, and to walk a path together that they otherwise would’ve likely walked alone. I have learned that the best advice comes from other parents and not from doctors as you walk the higher needs parenting journey.
When I met with Pastors Luke and Megan, I told them I stumbled across a powerful quote once that I felt described a parents struggle, no matter what the cause of the struggle. It was a quote that stated something to the effect of an outsider commenting on how a burdened parent was so strong and how do you continue down your path? The parent replies, what made you assume I had another path to choose? There is no glory or honor in the path itself, but there is in the dedication to walking that path educated, loved, supported and with intention.
My hope is that everyone that raised their hand that they knew or loved a family that has this struggle will leave church today and think of a way to support this family differently than you may have in the past. Ask the parents, how are you coping? instead of “how are you?”. It symbolizes that you realize the struggle, and care about how they are coping through it. Or maybe you invite them to our support group. Maybe you even offer to come alongside them to the support group, just to understand it on a deeper level. Their journey is likely a marathon, ever changing and fluid.
My other hope is one of not just tolerance or acceptance, but a respect for the decisions and challenges that burdened parents of this nature go through. The WISE certification is to be Welcoming, Inclusive, Supportive and Engaged. In my opinion, to hear this and other stories on a real level will help you to be all of those things to a topic that traditionally carries stigma and judgment. The message I want to give to my own child, myself and other struggling kids and parents is may you find grace and love for yourself on your journey, and may you be brave enough to surround yourself with a world that matches.
I am heavy burdened. My family is heavy burdened. Yet Jesus says, “Come to me you who are heavy burdened, and I will give you rest.” That’s what I want to foster here. A place of sanctuary for parents like myself. A place of rest where I can share this story in a small group and they will nod and know fully what my words mean.
I want to thank Pastor Luke for being a pioneer in so many ways. You change lives in this church, and I’m honored to be on this ride alongside you all.
Our support groups will start in March and will run monthly on Thursdays at 7pm. Please encourage those you know to come.
Thank you for listening to my story.