Challenges of an Unknown Syndrome

Kymee's Turning OneAt three months, Rose was diagnosed with Fetal Valproate Syndrome by a geneticist. That geneticist is the only doctor’s she’s ever had who knew what the diagnosis was without looking it up on google. If the doctors we deal with on a regular basis don’t know what it is – you can bet friends, family, babysitters, teachers, and random people who see her at the park or store have never heard of it.Kymee's Turning OneFetal Valproate Syndrome is a disorder caused by exposure in the womb to certain prescription drugs. For Rose, the symptoms included cleft lip and palate, a hole in her heart, specific facial and body features, and sticky ear – sometimes causing hearing loss. As she grows older, we are encountering both learning challenges and behavioral issues.d49c7-grandmaThere are many challenges with parenting a child with an “unknown” syndrome. There is next to no research and studies done on it. Little information is found through google. There are no other parents around whose kid has the same thing and I can compare notes. The lack of information available makes me as a parent questions everything I do – “Is this behavior because of the syndrome or am I doing something wrong in disciplining?” “Is this naughty behavior, or unavoidable behavior?” Another frustration is the inability to streamline all of her treatments and therapies. The Genetic and Rare Disease Information Center says this about treatment, “Currently there are no specific treatments for fetal valproate syndrome. Each symptom or birth defect associated with fetal valproate syndrome are managed individually, and may require a team of specialist.” The team thing never happens – it just means I have to go through a ridiculous intake program every time Rose sees a new doctor or therapist. This is time consuming and inefficient.3e604-12-may3So, what can you, the reader do?

  1. Be kind. Have empathy. If you see a kid having a melt down at the store don’t automatically assume the kid is a brat in need of better parents. Mom is frustrated – she doesn’t need your judgmental look or underhanded comment. You don’t know what that family is facing – so just be nice.
  2. Be informed. If someone with an “unknown syndrome” is in your acquaintance – find out about it – to the best of your ability.
  3. Don’t compare. My child is not like other kids her age. She is not like kids with other syndromes. She is not defined by her syndrome alone. She is beautiful and she has some challenging behaviors. She is herself – period. Let’s celebrate her growth – at whatever speed it is, and work on her challenges – without comparing them to others.
  4. Listen. I need a listening ear. I get frustrated and sometimes just need to talk about it.
  5. Ask.Don’t be afraid to ask, “How can I help you?”
  6. Do respite care. I trust few people with the care of my daughter – I trusted even less when she was smaller. If you are in the “trusted few” – I need you. I need you because somedays I need to get away or I am going to go mad. If you aren’t in the “trusted few” – spend some time with me and my daughter and become one of the few. My few are getting burnt out too, and I need you.
  7. Be patient with me when I am having a bad day. It probably isn’t directed at you – but at the frustrations of dealing with my child’s behavior, or the countless calls and visits I make to doctors and therapists.

Kymee 1

I remind myself often of the question the social worker asked us before we adopted Rose. “How do you feel about the possibility that she may have disabilities?” I responded, “God has given her everything she needs to accomplish everything He has set out for her to do.” Our job is to stay close to Him allowing him to direct us as we navigate this unknown syndrome – because it is not unknown to Him.

 

 

 

 

 

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