Do I tell Others About My Child’s Diagnosis? Who & When?
When my daughter, Hailey was diagnosed with a communication disorder, she was about 2 years old and I never really thought to tell others. Close family members and friends only knew because they were involved with her everyday life. It wasn’t that it was a secret or I was trying to hide something; (If you were observant and hung around for 10 minutes - It was likely pretty evident by her communication and language). Honestly, I just never thought to tell new people who entered our life.
A few years later when Hailey was in kindergarten she received another diagnosis of an intellectual disability, along with her communication disorder. There were a lot of new changes and adjustments happening in a short amount of time. Just to name a few, we went from an early intervention family plan to an individualized education plan (IEP) in a mainstream school, we were brought in by her school to be shown how far behind she was (even though she was just starting her education career; it was such a huge difference from examples of her peers), later she would receive an aide at school due to wondering outside of the school on more than one occasion & to assist in her academics. She would play nicely alongside a peer (or an adult) but wouldn’t ever initiate any interaction. Not to mention, that all of a sudden, there were a slew of tests, evaluations, doctor appointments, therapies, paper work, etc.
We were quickly realizing that there was a lot we would have to learn ourselves in order to help her be as successful as possible. At the time, I was working a dream career that I loved, in a high-tech company. I received amazing opportunities in leadership, to travel internationally, worked with inspiring, intelligent, caring, and charismatic people, had great benefits, and learned so much! However, it was also extremely demanding and at times I felt married to it. I knew that my young family needed me home more and the immense time I would need to spend taking Hailey to appointments, mastering this new learning curve for both her & I, in overcoming challenges related to developmental delays, how I would need to advocate for her, etc. all contributed to me concluding that I needed to make an adjustment because there just weren’t enough hours in the day for me to physically do it all. It was a difficult and hard decision, but in the end it was the best choice for our family, to resign.
In order to have more flexibility and be at home with my kids, I reopened my childcare. It wasn’t till an incident occurred and exploded that I thought, from this moment on, I would have to explain to every new person I met, the list of diagnoses my daughter's received. One afternoon, Hailey, her little brother Austin, and two brothers were playing in the room next to me; just about 20 feet away. I was bottle feeding and rocking a baby to sleep, so having four energetic kids (all between 3- 6 years old) was naturally, not the best idea to have next to me when I was putting a baby down for a nap. It was the perfect time for them to play with toys & watch a movie in the other room. I reminded them a couple of times, that it was quiet time and the door needed to stay open. Later that evening, after I was closed, I received a surprising phone call from the parents of the boys who were playing earlier and they had some shocking news for me!
Before I go any further, I think it's a good time to note that I am allowing myself to be completely vulnerable with what I am about to share and I do so, in hopes to enlighten others what special needs families can go through, bring awareness, so that together as a society we can better understand others (of different abilities), be a support, and be fully inclusive. So on the other side of the phone, the boy's parents said their sons stated, that Hailey had pulled her pants down (showing her bare bottom) and thought it was funny. They further went on to say that their boys were hysterically crying and were traumatized and would not be coming back ever. I apologized, and was shocked because everyone was all smiles and giggles earlier. No child told me anything, I could hear basically everything going on (again, I was only 20 feet away), and nothing seemed to be out of normal at all. Nonetheless, I didn't want to disregard them; I took the concerns seriously. On the other hand, I tried to also put it into perspective; explaining to them (for the first time), that Hailey had an intellectual disability (she was 5 years old at the time, but developmentally & cognitively was younger). After we received the info. and talking with Hailey we quickly realized that if it did occur, she definitely didn’t understand or grasp any concept of wrong-doing at all. It was clear they were very offended and had no understanding (in regards to Hailey) but didn't care to either - They insisted their kids were "scared for life". From their prospective, they were 'protecting' their kids, which as a parent myself, I can understand and appreciate. It was the response and how they handled the situation that bothered me.
What made this more difficult was the business card left on my door, that I came home to about a week later, from an investigator. I called the number on the card, but they didn’t call back – days later, I received a letter of a complaint from a different state agency stating I was "neglectful", to let this incident happen & that my business could be filed against. A couple of days after that, the investigator who left her card on my door, came to investigate. She apologized for not returning my call and explained that she was not able to, at that point because she needed her visit to be “an unannounced, surprise visit”. After seeing my set up and providing all the details of what happened, and explaining the other letter I received, she said that there is no found evidence to validate this complaint and if one more complaint comes through, from this person, it would go to the district manager because it showed that each complaint was false, invalid, and looked as if I were being harassed. Thankfully, no further official complaints came in.
Setting aside all the various emotions I went through with that situation (i.e. humiliation, anger, stress, sadness, etc.) – I came to realize they didn't understand, (nor want to) and I just needed to let it go. However, in that process I really asked myself, “Do I need to tell every new person we meet or that comes into our lives, my daughter’s diagnosis?” Because I don’t want to, and I don’t believe I should have to. How do I navigate new relationships? Will anyone ever understand? I can’t guarantee that she will never do something inappropriate. Will I be able to make new friendships? Will I lose relationships if something happens in the future?
These questions raced through my mind and began to make me hyper-conscious of where I took my kids. It made me want to retreat and become hermits and stay in my home that I knew was a controlled, safe environment. But that’s not realistic or healthy…So do I go around providing a diagnosis list along with her name and some sort of disclaimer when I introduce my child? Of course not!! That’s absurd! Here’s the deal…
There will be natural situations that you will talk about your child’s diagnosis - For instance, at school, in IEP meetings, with medical professionals, or with your childcare provider. Other times, you may want to share more (obviously, at your discretion), when you may be talking with another special needs parent or friend that strengthens you in this area, that you confide in, swap helpful tips and knowledge, or share your experiences to provide hope and encouragement.
However, you DO NOT need to call up all your friends and family one by one to tell them your child’s medical conditions – Nor do you need to tell someone you just met! Ultimately, it is up to you, who you open up to, who you tell what, etc.
My child is always my number one concern – I never want her feel as though, something is "wrong" with her, ever! - Because there is NOT! She has been made in God's perfect image! Adding to that, I always want her to stretch herself to grow, to keep trying, keep learning, and reach her full potential. She is capable of doing anything, her journey to get there may just look different.
I'm typically very open to the special needs topic (as long as it's respectful). I can appreciate when people may ask questions or are trying to get understanding and I’m always happy to answer what I can. These are the ones I give my time and energy to. The others who choose to be arrogant are not ready to hear truth and ultimately it falls on deaf ears anyways; so I let them go and hope that in time, they will eventually turn around. I’ve taken a public stance to help educate others, create awareness & advocate for children with varying abilities, and to empower families to thrive on their own journey. Regardless of where you are on your journey, my hope is that you take hold of the power you have available to you, in your life…and Go THRIVE!
Every problem has a solution.
About the Author: Christina Rauschert is living an on purpose life & fulfilling her dreams - Wife and special needs mommy of two, woman of faith, special needs advocate, and founder of the Limitless Ability Organization. She loves spending quality time with her family, has a passion for educating and advocating for the special needs community, exploring cultures through food and travel; and creating memories through fun experiences.
