Hi, we are the Ohlschlagers. Mom is Ashley, Dad is Matt, and Big Sister is Lily, but this story is primarily about Emma! We live in the rural county of New Kent, Virginia between Richmond and Williamsburg with our rescue dog, Boomer. Everyone in New Kent knows Emma. She loves going to school, waving hi to all the cars that drive by, and being everyone’s helper. When we are not home, you can usually find us at church, Lily’s field hockey, or the lake!
Emma was diagnosed in March of 2018 when she was 8 years old. Mother’s intuition told me during pregnancy something wasn’t right, but it wasn’t until 6 months that our doctor agreed. Over the course of 8 years, we saw every kind of specialist you can think of. Many of them gave us a diagnosis for each symptom like developmental delay, ADHD, growth hormone deficiency, low muscle tone, sensory processing disorder, autism, speech and language impairment, etc. No one could put their finger on the root cause leading to her many atypical behaviors and development. Finally, when whole-exome sequencing (advanced genetic testing) became covered by insurance, we agreed to do the bloodwork. It revealed she had a mutation of the naa10 gene on one of her x chromosomes. It was unique to her, neither her father nor I had the mutation. I cannot explain the relief it was to finally know WHY behind her challenges.
Life with Emma is an amazing growth opportunity for me as a person, mother, and Christian. I know that sounds crazy but when I reflect on our lives and the challenges we have faced; I see triumph all along the way. Watching her be happy and positive despite her challenges has helped me put my own problems into perspective and be grateful. Seeing her never give up no matter how many tries it takes her, makes me realize I can do anything I put my mind to. Experiencing the unconditional love she has for complete strangers, gives me a glimpse of how God sees all of his creation and how he loves us, period. This encourages me to break down my own walls or judgment of others. Being in her comfort zone where she can safely express her frustration and anger, makes me learn patience and compassion. While it has not been easy, it has been amazing. I have had to remind myself regularly God’s got this! As much as I want to be in control and fix things for her, she is “perfectly and wonderfully made.” What He wants for her is better than anything I could ever imagine for her.
Early intervention starting at 6 months and therapies of all kinds have been extremely helpful. I have learned that the most important aspect of therapy is her connection with the therapist. When there is a strong connection, Emma is more compliant, therapies are more productive, and Emma makes the most progress. Because she needs help with every little thing it’s hard to pinpoint what therapy has been most helpful for her, but for me personally, ABA therapy has made all the difference. It has helped ME learn to better manage myself and how I help and support Emma with her needs. Emma’s independence is growing and her tantrums are fading and life is amazing right now. But that’s just it, you can only focus on the now! I know there will be more tough days with tears, frustration, and mourning the loss of what could have been… BUT then I get back up and push on just like she has to every day!
-Ashley and Matt