Watching my daughter’s pregnancy was excruciating. The whole pregnancy from about 16 weeks on was fraught with worry. Around 16-20 weeks, it was noted via ultrasound that Joel’s lateral ventricles were enlarged. The doctors suspected hydrocephalus, and my daughter, Cassie, was transferred to a high-risk OB GYN for the remainder of her pregnancy. Amniocentesis was performed with no obvious genetic issues. There were multiple non stress ultrasounds and another amnio, as the ventricles continued to appear larger. At about 28 weeks gestation, they performed a fetal MRI and discovered that Joel was missing his corpus callosum. We were told he had complete agenesis of the corpus callosum (C-ACC) and colpocephaly. It felt like a death sentence. The high-risk OB doctor started that conversation by putting his hand on Cassie’s and saying, “Mom, this is not your fault” following up with the offer of a late term abortion. In hindsight, Cassie says she never would have allowed any of the invasive testing prior to Joel’s birth. He didn’t have anything that was threatening his life, and all they did was fill our hearts with worry to the point that this joyful time of pregnancy couldn’t be enjoyed.
Joel was born full term. His diagnosis of C-ACC started us on a journey that has taken so many winding roads over his 11 years. At first, we concentrated on birth-to-three therapies, as Joel was very low tone and had mild chronic obstructive sleep apnea. We learned about “midline” and “wait and see.” Joel met all of his milestones late, but he eventually did meet them. It was when he entered Head Start and pre-k that behaviors became an issue. Joel was completely resistant to any demand placed on him whether for something fun or otherwise. A lot measured up against the C-ACC diagnosis as far as difficulties with social situations, processing delays, high pain tolerance, strabismus, etc., but a lot did not jive. At kindergarten age, Joel was also diagnosed with ADHD, and he began taking medication. This helped some, but the behaviors were still so challenging. An advocate at that time suggested we explore a genetic finding that was in Joel’s records but deemed insignificant at the time. Joel has a 10q26.3 micro deletion. Upon researching, we discovered that Joel ticked off so many characteristics of this chromosome disorder that it almost overshadowed the C-ACC.
By kindergarten, Joel was transferred to a special education school and has been there since. He is currently in the 5th grade. In addition to C-ACC, ADHD, and 10q chromo disorder, Joel was finally diagnosed with Autism Spectrum Disorder with a Pathological Demand Avoidance profile. PDA is anxiety driven and not formally recognized in the US. All these things together make for a very complicated little man. He struggles continuously with school and social norms, is deemed intellectually disabled, and is globally delayed. He doesn’t read, and math is a mystery. As we’ve explored PDA (pathological demand avoidance) we’ve reduced demands and have changed many ways that we react and interact with Joel. This has resulted in a much calmer household. If you are an important person in Joel’s life, he describes you as “his best.” So, when Joel tells me “Grandma, you’re my best,” what he’s saying is he not only loves me but he trusts me. Sometimes that’s not pretty. Sometimes that’s behaviors that have to come out because it’s only safe to do that in the presence of someone who is his “best.”
Joel loves his dogs and all animals, loves to be outside fishing and playing in the dirt, and he loves to
I was asked what advice I would give for other grandparents, and my first advice is to just love them unconditionally. Throw out the window any preconceived notions you have about how children should be parented. Oftentimes, our circle of friends and family shrinks with the presence of a special needs child. If you can, be present in the life of your grandchild, and if you are able to offer the parents an occasional break, know that they’ll appreciate it and be better for it.
–Trecia
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