Hi, we are the Ohlschlager’s. 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. 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 life and the challenges we have faced; I see triumph all along the way. Watching her be happy and positive despite her challenges have 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 judgement of others. Being 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 kind 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 its 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!
Connecting with other families has been a life saver for many reasons. Because Emma is one of so few, we are learning what to look for medically from other children in the group. We have used the experience and learnings of other families to inform our own medical decisions. You will often hear me say, “You cannot understand what it’s like to have a special needs child unless you have lived it, not just experienced it for a day here or there but day in and day out.” Connecting with other families has given us a support group that can relate to what we are going through and provide that unspoken, immeasurable mental health support that cannot be replaced.
My hope is that by sharing our story, readers will see the amazing gift these children are to the world; they are the “light of the earth.” My hope is that readers walk away encouraged that all the pain and suffering they may feel will be a small investment made for a more amazing life than they could have ever imagined for themselves and for their children. My hope is that readers will see the value of bringing groups like ours together.