invisible disabilities and judgement

Mikisa has several invisible disabilities that i am finding are much more complex and challenging than her obvious physical limitations.  they are: epilepsy, ADHD, learning disabilities, cognitive impairment and sensory processing disorder [on top of the “visible” ones: hemiplegic cerebral palsy, hearing loss, and left sided neglect].  particularly her epilepsy is a continual topic of conversation in our house, as we analyze which of her behaviors could have been triggered by the previous night’s seizure activity (still happens every night).  for example, this week at school she had a near-perfect day on monday, with glowing reports of how amazingly well she did…then on tuesday we were slapped in the face with a horrible report of her hitting, scratching, kicking and being generally defiant and unruly.  so we ask a lot of questions: what were the triggers?  did we notice anything different when she woke up?  could it be that she had a lot more seizure activity in her sleep?  it is so frustrating to analyze the unpredictability of it all.

epilepsy is often the only disability a child has.  severe epilepsy, such as ESES, can be hard to “see”…the child can experience all different types of seizures.  one of the most common types is the absence seizure, where they go blank.  some children have hundreds a day!  or, like Mikisa, they can have continual seizure activity every time they “sleep”.  either way, it is a disability.  these abnormal brainwaves or “discharges” have significant impact on quality of life for a young child.  in school, for example, if a child is experiencing seizure activity every few minutes, they might miss half of what the teacher is saying.  that would in turn cause confusion and possibly agression or other negative behaviors.  also, a child experiencing drop attack seizures may require a wheelchair to get around or a helmet to protect their head.

several months ago, when Mikisa was really struggling with a lot of negative behaviors, i realized that people who had no idea what we were dealing with regarding Mikisa’s health were looking at us.  probably thinking, would you please make your kid shut up.  or are you seriously letting your child hit you while you pay for your groceries?  and then, when she would collapse on the floor, i would get looks that said, that’s nasty, you letting your kid sit on the dirty floor.  it was really hard for me to be in that position…i’m a perfectionist and actually quite a stern disciplinarian.  but my child, with her limitations, is often defiant and noncompliant.

the strange thing is: i used to judge people whose kids were unruly.  i would glare at the woman holding the screaming child and think to myself: i would never let my child act that way in public.  i would look at the awkward 6-year-old in a toddler stroller and think, that kid is going to end up obese if you keep pushing her around like she can’t walk.

and now i am that mom.  you know, the one with a 6-year-old who is still learning to walk and throws temper tantrums in public.  and now that i see things through this different lens, i wish people would realize the complexity of the human body and how many children struggle with varying disabilities to varying degrees.  it makes me realize what a gift it is to have a brain that is in tact and seizure-free.  what a gift it is to have comprehension, hearing, and the ability to reason with logic.  what a gift it is to have the ability to clearly communicate my thoughts and feelings and be understood.  and it makes me wish that Mikisa could have these gifts too.  but if not, then i wish that people would see past the rough exterior of her different behaviors and recognize the beautiful soul that is inside.

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5 responses to “invisible disabilities and judgement

  1. Hi Christina,

    Yes, I too have grown very discouraged dealing with the condescending judgments from others about my parenting or the home environment. In fact, this has hurt me more than dealing with my own kids’ , public tantrums. Remember Angie and Jeremiah in LosAngeles? I so understand. Also, it has been other believers that have judged and hurt me the most. The only church whose members have NOT judged, or at least made it obvious, has been the Russian Orthodox.

    I also have been on the other end of this. I remember back when I was teaching and thinking to myself how pathetic some of these parents are in regards to managing their children. I would always think that I could do better. If I was their mom, these kids would be much different. I remember one boy in particular. His behavior was so out of control in the classroom. He wasn’t in special ed, but he should have been. His mom was young and single. She would escort him to his class every morning. I would see her walk him, and I would judge her.

    Now, I so wish for me to see her again. I would beg her for forgiveness. How painful it is to be blamed for your children’s maladaptive behaviors when it’s not the environment that spawns their behaviors, it’s their impaired brains. A healthy brain is a happy life.

    Cindy Narvaiz

    ________________________________

  2. Thanks for your frank sharing. You are dealing with so many unknowns. Your recognition will help you find the way to persevere in guiding and helping her to blossom. I Love the photos.

  3. What a beautiful post!! Even as a special education teacher, I still have to remind myself to have even that much more grace & mercy with my students! People take for granted these blessings they forget are gifts & that not everyone has those same blessings! I hope I never forget to be thankful for so called “normalcies”!!

  4. I was definitely that person who witnessed children throwing temper tantrums in public, conducting themselves in a completely inappropriate way, and thinking that that would never be my child. I also now know reality. Reality is that each child is going to be different. Each child is going to have their own special needs and expressions of behavior. While we have gone through a challenging 2nd year with Noah, I also am able to appreciate how far we have come. I am able to take each obedient step he takes and choice he makes and be thankful. Noah doesnt have the physical disabilities and challenges that Mikisa faces, so I can’t even imagine the strength that God has equipped you with to deal with the difficult times you must be faced with continuously. Being a mom is definitely something that no one can ever fully describe or prepare you for. It is a gift. It is a challenge. It is a blessing. It is an honor to play such an important role in someone’s life! I can also say…being a mom has taught me that the little things dont matter…the messy clothes and face that result from a meal, art project, or playing in the dirt are no longer the end of the world. They rarely even phase me anymore. The looks from strangers when my child loudly announces that he wants me to dance with him in the middle of the grocery store is something that I now do proudly without hesitation. The things that once seemed embarrassing are now a blessing to me…they remind me that life is very short, I only get to do this once, and my actions will last forever in the minds of my children and in the eyes of God. I say all of this to say, while I can’t relate to being a mom with a special needs child, I can relate to being a mom. I think you are amazing. I think that God has given you and Troy such an amazing honor to be Mikisa’s parents. I encourage you to embrace every single moment, and remember that the people passing by who give you those looks when you have a challenge at the checkout lane, have no idea how blessed you are to be with that little girl. They have no idea the love in your family and to be honest, they probably cant even understand such an unconditional love. The love of truly caring and Godly parents!

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