Kara Bender Solomon

@karabendersolomon | contributor
I am a 2nd grade teacher and mom to Bennett, 5(CDD), Parker,8, and Weston,2. Bennett was diagnosed with CDKL5 Deficiency Disorder when he was 11 months old. Since his diagnosis, I have been very passionate about advocating for disability rights and children with special needs. I believe that neurodiversity is a gift to our world, as long as our world is willing to understand and embrace it.
Community Voices

The Weight of Parenting a Medically Fragile Child

Debating whether to call the paramedics or take him to the E.R. this time…

Heavy.

Being your child’s nurse, without any training and constantly watching, listening for any sound of distress, and jumping up in an instant to suction him or care for a seizure…

Heavy.

Knowing that no one truly understands our life unless they have lived it.

Heavy.

Thinking that if we are authentic with our struggles, then people will say we are “negative thinkers” or everything is “all about us.”

Heavy.

Driving in the car, praying he won’t have a seizure until we get home and then having to pull over to reposition and suction because, of course, he did have one and now needs oxygen.

Heavy.

Suctioning at every stoplight. Checking my mirror to make sure he is breathing…

Heavy.

Dealing with the school district and fighting for my child’s rights and safety…

Heavy.

Hearing my oldest ask why we have to be one of the “rare” families with #Topic and that it’s not fair…

Heavy.

Making call after call for medical equipment, dealing with insurance companies, appointments, interviews, social workers, ordering medications, talking with specialists…

Heavy.

Making decisions on treatments, medications, therapies, and life-saving devices without any prior training…

It’s very heavy.

Wondering if your child will wake up in the morning…

It’s a lead brick kind of heavy.

Going on with life, pushing through the weight of it all, because he is worth all of it.

Heavy.

Community Voices

It’s Almost Time

It’s almost that time. The time I have been anticipating, and dreading, since Bennett’s diagnosis of CDKL5 Deficiency Disorder. The time when strangers will know instantly that he’s disabled. The time when the stares, comments, and judgements will start.

Up until now, Bennett is “just an adorable, sleepy baby” to the average person he meets. We get “Oh, isn’t he adorable!” comments from passerby mixed with big, smitten smiles. I’ve grown away from my feelings of insecurity and scrutiny when he was an infant and now we merrily go about our day, not giving a care in the world what other people may think or say.

It’s almost that time to get a wheelchair. I knew it was coming. His therapist has been mentioning it for months. Every time I thought about it, I would feel a mixture of excitement for my baby boy to have the support he needs, and a feeling of pure devastation that this is WHAT HE NEEDS. I have a child with a lifelong, severe #Disability. He is most likely to never walk, talk, or feed himself. He also has daily seizures that seem to be getting worse as he gets older. At 2 ½, most parents are contemplating which preschool to send their children, not which wheelchair to buy them. I feel like I want to keep him in his little stroller, his legs hanging out, his head reaching over the top of the lining, until he can’t fit anymore. I want him to continue to look like a cute, sleepy toddler to the average person, not a disabled toddler who keeps his eyes closed because of his #Blindness.

It’s almost that time. Do we just get an adaptive stroller and put off the inevitable wheelchair, or do we dive right in and get the wheelchair van so we don’t have to do it a couple of years from now, anyways? I want to do what’s healthiest for Bennett, his father and I, and his caretakers. I’m beginning to think that the best choice is sitting right there in a lump on my heart. I think that it’s time.

Raising a Child With CDKL5 Disorder: What to Know

After our son Bennett was diagnosed with a rare, neurodevelopmental disorder called CDKL5 deficiency disorder at 11 months old, I was told that the future was unknown for him, that he would “write his own story.” That was the most positive thing we heard. Then we were given some websites to visit and we read about the statistics for a child like Bennett. It was grim, to say the least. The neurologist and the geneticist chose their words carefully, careful not to be too devastating and careful not to be too positive, in case we were to become disillusioned about our son’s condition. We were also told to call our regional center to seek an assessment and services as soon as possible. What they didn’t tell us was how we were in for the fight of our lives. The fight for services, for medical equipment, for the best care possible for our child. We have to fight for medical coverage. We have to fight for the safest and most effective anti-epileptic medications. We have to fight for therapies. And we have to fight for the best placement in the school districts. Every day that I am not working, I am making phone calls and emails to case workers, therapists, doctors, specialists or advocates whom I have questions for. In between that, we are at therapy and doctor’s appointments, or completing our home therapy programs for physical therapy, speech, occupational therapy, early intervention, vision, and feeding and oral motor development. Having a child with a severe disability and medical needs is indeed a full-time job. But here’s one more thing they didn’t tell us. They also didn’t tell us that our son Bennett would make even the grumpiest stranger smile. That his pure, sweet innocence would make anyone’s day better. That a cuddle or giggle from Bennett would feel like sunshine on my heart. They didn’t tell us that Bennett would lead to living a life I never knew I wanted, and to experience feelings I never thought I would understand. They didn’t mention that Bennett would be a true gift and enrich our lives in every way possible — teaching us empathy, advocacy and unconditional love. They didn’t tell us that our son would be our angel and we would want to do anything to make his life the fullest, happiest life possible. So remember, when you’re given a diagnosis for your child, there’s a great deal doctors won’t tell you. Some of it may feel like insurmountable challenges, but some may also be the best surprises of your life.

Raising a Child With CDKL5 Disorder: What to Know

After our son Bennett was diagnosed with a rare, neurodevelopmental disorder called CDKL5 deficiency disorder at 11 months old, I was told that the future was unknown for him, that he would “write his own story.” That was the most positive thing we heard. Then we were given some websites to visit and we read about the statistics for a child like Bennett. It was grim, to say the least. The neurologist and the geneticist chose their words carefully, careful not to be too devastating and careful not to be too positive, in case we were to become disillusioned about our son’s condition. We were also told to call our regional center to seek an assessment and services as soon as possible. What they didn’t tell us was how we were in for the fight of our lives. The fight for services, for medical equipment, for the best care possible for our child. We have to fight for medical coverage. We have to fight for the safest and most effective anti-epileptic medications. We have to fight for therapies. And we have to fight for the best placement in the school districts. Every day that I am not working, I am making phone calls and emails to case workers, therapists, doctors, specialists or advocates whom I have questions for. In between that, we are at therapy and doctor’s appointments, or completing our home therapy programs for physical therapy, speech, occupational therapy, early intervention, vision, and feeding and oral motor development. Having a child with a severe disability and medical needs is indeed a full-time job. But here’s one more thing they didn’t tell us. They also didn’t tell us that our son Bennett would make even the grumpiest stranger smile. That his pure, sweet innocence would make anyone’s day better. That a cuddle or giggle from Bennett would feel like sunshine on my heart. They didn’t tell us that Bennett would lead to living a life I never knew I wanted, and to experience feelings I never thought I would understand. They didn’t mention that Bennett would be a true gift and enrich our lives in every way possible — teaching us empathy, advocacy and unconditional love. They didn’t tell us that our son would be our angel and we would want to do anything to make his life the fullest, happiest life possible. So remember, when you’re given a diagnosis for your child, there’s a great deal doctors won’t tell you. Some of it may feel like insurmountable challenges, but some may also be the best surprises of your life.