K

K

Male / 13 years & 2 months

K’s Journey

Share the first part of K's story for readers on Sleuth! When and why did you start to feel concerned?

Keith was a good baby. He met all his milestones early; he was rolling over, crawling and walked at 8 months. The area he lagged in was speech. Around 6 months, I noticed he wasn’t doing any babbling. He started having chronic ear infections and had tubes placed in his ears at about 9 months so I attributed that to his slow developing speech. His speech began to pick up at about 18 months. He started stringing words together and talking in short sentences. He was interested in other children and would play with neighborhood kids. His father is in the military and deployed right before K’s 2nd birthday. Towards the end of the deployment Keith began losing words, he stopped talking and developed what I called gibberish, non-verbal noises he would make constantly replaced language. He stopped being interested in other kids, the friends he used to play with, he stopped interacting and talking with them and stopped making eye contact. It was very confusing and concerning for me so I referred him to early intervention for an evaluation.

What was your experience, if any, seeking a diagnosis or treatment?

At the time I was working as a child service coordinator and had been in this role before I even had K. My job entailed completing developmental assessment to children, connecting them to resources, walking through the evaluation process for suspected developmental delays and behavioral issues. So when K’s development became a concern for me I knew what to do. I made a referral to early intervention services to have him evaluated. They came and assessed him and confirmed the speech delay but they also voiced concerns about atypical behavior. They never said autism, but I was familiar enough with the lingo to know what they were referring to. They referred K to have an ADOS evaluation to screen for autism. With this evaluation, I took K to a clinic where they had lots of toys and observed him play. They would instruct me to call him to see if he responded to his name when called (he did not, it took several times), they had me call his attention to something outside and point to it to see if he would look in that direction (he did not), they attempted pretend play by modeling feeding a baby doll and asking K to do it (he did not). We left that evaluation with a diagnosis of autism.

Do you have any other thoughts or advice you would like to share from this experience?

I remember leaving the clinic the day K was diagnosed feeling like my world had been turned upside down. The clinician that day told me I was taking home the same child I had brought in that day, but it certainly did not feel like it. It was as if everything had changed and life felt so uncertain. Those first few months after his diagnosis were so tough. Especially seeing no changes or improvements after starting all these therapies. I made a tough decision about 6 months after to quit my job to stay home and work with him. It made all the difference. Being able to sit in speech and occupational therapy sessions to observe how they were working with K so that I could implement these strategies at home, asking therapists for homework and activities I can do at home to reinforce what he was learning in sessions, collaborating with his therapists and teachers and helping them to learn about K so they can make the most of their time with him. K blossomed, his speech exploded and everyone could see it. His school reaffirmed me by sharing how much they felt me staying home had greatly benefited K’s developmental progress. I learned that I am the expert of my child and his most important therapist.

Timeline

Below is a timeline of K’s observed symptoms, diagnosed conditions, and treatments and therapies.

K's Medical Notes

Signs & Symptoms

Slimming (vocal and hand flapping)

Social issues / Restricted social interaction

Eating or diet issues

Delayed speech or vocabulary

Diagnosed Conditions

Autism

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