Diagnosis Road: Ahmond's Story (hypotonia, seizures, non-verbal, spd)

The diagnosed: Ahmond is 6 years old

Those who love and care for him: Raschard, Jenn and big sister Addie

Name the diagnosis and tell us as much about the diagnosis story as you wish.

When I was pregnant, I had Polyhydramnios (excess amniotic fluid) and they told me that he may not have a stomach or might have esophageal atresia judging by the ultrasounds. But then he was born with all of his organs they were just like, oh ok, he's fine.

As a mom I knew differently. He was lifeless, very limp and he looked right through us. We took him to the same pediatrician until he was 6 months old, NOTHING. Even after knowing my pregnancy history and looking at him. 

We took him to another pediatrician who had great ideas, but never did anything with those ideas other than get us to Birth to Three (an early intervention program) which I'm extremely thankful for! Finally, we got him in with a different pediatrician, but honestly I've had to do things on my own. I got him in with a neurologist myself and I transferred him to Cincinnati Children's neurology department after begging his pediatrician to transfer us. 

Thank God for Cincinnati Children's. They have gone above and beyond with Ahmond and our family. The only doctors who seem to pay attention to us are at Cincinnati Children's. His neurologist has made referrals to a dental specialist, orthopedic department, speech pathology, and cerebral palsy clinic-- all there in the hospital.

I felt helpless in the beginning, but I just kept pushing for him. He had testing denied in the past so I wrote our governor and told him, "I'm a nurse, my husband is a law enforcement officer, we pay for insurance, we both serve the public and you're telling me that I can't have testing approved that could aide in the care of my son?" That week I heard back from Governor Tomblin’s office. They sent me papers to sign and made the West Virginia Commissioner of Insurance approve his testing!

Ahmond went without any diagnosis until he was 1 year old, which was still only hypotonia (low muscle tone) and doesn't explain any of the other delays that Ahmond has. He was diagnosed with epileptic seizures at age 5, although he had been seeing a neurologist since 9 months of age. 

Ahmond did not sleep through the night until he was about 5 years old; he will still sometimes wake up in the middle of the night, but he's not fussy. He has sensory processing disorder (spd) and while he does make several sounds and will hum along to a song or tune, he is nonverbal. 

He doesn't crawl, walk, or stand, nor is he is able to chew. He can swallow liquids and solids by mouth but they still don't know why he can't chew. He has a tilt wheelchair and a wheelchair that doesn't tilt. His tilt chair is more of a leisurely chair and the other chair with larger wheels is to try and get him to self-propel. He has to be strapped in by a lap belt and chest harness to keep him from falling out. He has a walker at home and he wears AFOs to keep his feet lined out, along with knee immobilizers to keep his knees from buckling.

Ahmond has received occupational therapy, physical therapy, speech therapy, and vision therapy since he was about 9 months old. Along with MRIs and EEGs, he has gone through multiple different genetic testings and some of the results were so new that they don't even know what they mean yet. 

How does it affect your relationships? 

I know God blessed our family with Ahmond because He knew we would take care of and love him more than anyone else ever could. I'm not saying it's easy by any means, but we work together as a family to make sure all of his needs are met. I had to quit working a full time job because Ahmond was very sick through the first few years of his life. I couldn't ask an employer to let me call in as many days as I ended up needing off to get him better. 

I will say though that my employer has been great and I still work one day a week for the same doctor. My husband's employer has been great as well. 

What is the hardest part? 

One of the hardest parts for me is that Ahmond cannot talk. I would love for him to be able to tell me what he's thinking, what's wrong if he's upset, what he would like to eat or drink, etc. We have learned to judge what he needs by the tone of his cries or screams.

What is an unexpectedly good part? 

With all that being said, for the most part he is the happiest kid ever! They love him to pieces at school. He goes to school full-time and we're more than blessed with the people there who love him like he's their own.  His principal takes him to the playground and puts him on her lap to swing! His teacher and aides send me pictures and videos of him throughout the day, playing and having fun. 

When people try to comfort you, what is the least comforting thing they say (even though it may come from a good, kind place)?

"Everything will be ok." 

"He'll be walking and talking before you know it."

Do I want him to be ok? Do I want him to walk and talk? Yes!!! I'm sure it's supposed to be comforting, but it's not.

We live it everyday and these phrases just go in one ear and out the other, the only thing we keep is the love and kindness they're meant to give us. We appreciate people trying to encourage us, but what we'd rather hear is: 

"Wow, he has come so far in the last six months or year."

I think what I like most is when people engage in a conversation with me about Ahmond and try to learn about him rather than trying to pacify me or us. After all, he is my child, just like Addie or any other child to any other parent. I love to hear people comment on his progress because it lets me know that not only we notice, but others do as well.

Are there any places you just cannot go and do you have any advice for how the world can be more inclusive? 

Anywhere that requires him to be silent!! You never know when he will scream or just start being loud. Obviously, this doesn't bother our family or anyone who knows him, but if it's somewhere that requires "quiet" we can't go. People are usually caught off guard by his outbursts and arm/leg flapping. 

What do you want other people to know about parenting this diagnosis?

For the most part he's a happy boy and I love him more than life. I'm not gonna lie I do have a breakdown and cry probably every 6 months or so, just letting all my stress out and that's ok. It's just very overwhelming giving 24 hour/around the clock care to my baby boy and not having answers. 

It's not the taking care of him part that makes me cry. It's me wanting to know everything I can to improve his daily routine and help him function at maximum capability. But here's the thing...doctors can't even tell me a lot of things for certain...I have to research and learn them on my own. 

More than anything I guess I just hope that I can give him everything he needs and wants. Through all of this I can't leave out a few people that make our world go 'round! My husband, Raschard. Ahmond has the best daddy in the world..like hands down could not ask for better!! Addie is the best big sister ever. She's always been his protector; she can calm him when no one else can, their bond is unbreakable. And my mom...she is certainly my rock. Other than his teachers and aides at school, my mom is the only person I trust to keep Ahmond and that says a lot!