It's a term that makes me cringe. One that I hear quite a lot when it comes to Marvin. Twice gifted. The more common term is twice exceptional. It means intellectually gifted children who have some form or forms of disability. These children are considered exceptional both because of their intellectual gifts and because of their special needs.
This week I sat down at UVA with a neuropsychologist. Marvin has spent several days testing at her office and I was ready for the results. What was supposed to be a 30 minute follow up expanded into 90 minutes and she ended up being late for a meeting. But there was just no way to condense the results into a short and sweet package.
She started off with what she calls the "good news". Marvin has a normal IQ. He also tested average or in several cases above average in the learning department. She (and Marvin) credit homeschooling and his reestablished love of learning. The Dr. says he is super smart and tries really hard. That was good to hear.
But she stated, for every strength there were strong deficits. She went on to explain how brains are supposed to work and areas that are supposed to do certain things. She went on to explain how three events reshaped Marvin's brain and in some cases destroyed vital connections that are essential.
Marvin was exposed to Meth in utero. He was born addicted. Strike one. Then he he was shaken resulting in Shaken Baby Syndrome and seizure activities. Strike two. Then he was placed in foster care and had trauma and stress of non permanent situations until he came to live with us. The longer you stay the more trauma. Strike three.
What does it mean for Marvin? Well it simply means that even though he's smart his brain sustained a ridiculous amount of damage. Unrepairable damage. That part hurts. I can't fix it. For years we have tried to "fix" Marvin. Having a Dr. tell you you can't make it better cuts to your very soul. I'm a fixer. That's what moms do. But sometimes you just can't and you have to learn to go forward with what you have.
Marvin will have to learn adaptation skills. We will have to teach him how to work with what he's got. Marvin has already subconsciously learned some skills. He will have to have stuff broken down into manageable pieces. We also will have to have more therapeutic and medical intervention. Marvin gets caught in loops and can be inflexible. He then has triggers and emotional meltdowns. Intensive therapy will help teach Marvin coping skills. Additional OT will help with fine motor adaptations. Marvin may also require in home therapy.
The Dr. found that Marvin is struggling at school. Yes, he is back in school. He wanted to try. We love where he is and it has a special place in my heart. The Dr. has a large list of modifications that will need to happen there as well. We spent a good amount of time talking about how great alternative schools are (she grew up Waldorf) for kids like Marvin. But she also advocated for homeschool and said she believed that Marvin learns best one on one.
When I left I felt totally overwhelmed and sad. And angry. I don't think it's fair that he's had to have gone through so much. When the Dr. tells you that your child will always be harder to parent than the average child and lots of people won't understand how complex his needs are it's a huge punch in the gut. I went home and had a good long cry. Then I binged on chocolate and chick flicks.
Right now Shannon and I are wading through it all. Here's what I know. Marvin is still Marvin. Just because we know more now doesn't change who he is. It does help me be a better advocate for him. He's an amazing kid who lived through a lot of crap and came out scarred and battered but still victorious. He won a huge battle by thriving. Most kids who go through what he went through aren't as lucky. He has a family who has his back and loves him unconditionally and will advocate for him fiercely. Just because he had a rocky start doesn't mean he will have a rocky finish. We will continue to stand strong together and we will overcome.