My daughter has a diagnosis of apraxia. This is difficult to write because most people don’t put this kind of stuff out in the open for public consumption, but I  know there are many families going through similar journeys and perhaps putting this out into the universe will inspire or support just one mother or father feeling heartbroken or alone. This is a story not of sadness, but of hope, perseverance and growth. 

According to The Mayo Clinic, “Childhood apraxia of speech (CAS) is an uncommon speech disorder in which a child has difficulty making accurate movements when speaking. In CAS, the brain struggles to develop plans for speech movement. To speak correctly, your child’s brain has to learn how to make plans that tell his or her speech muscles how to move the lips, jaw and tongue in ways that result in accurate sounds and words spoken with normal speed and rhythm.”

In other words, lots and lots of speech therapy, among other things.

Vivi arrived on May 7th, 2012, an 8 lbs bundle of adorable rolls with a full head of thick brown hair. She was the picture of super chubby, rosy cheeked health. She and I were very attached that first year: I was home with her and nursed until just after her first birthday. It was at around 9 months that I noticed she wasn’t doing all of the developmental things she was supposed to be doing…rolling over consistently, crawling etc. She started PT privately as I scheduled evaluations with Early Intervention. Soon enough she had an IEP (Individualized Education Plan) and started walking at 18 months. Late, but still in the normal range. A short time later, her physical therapist thought she would benefit from occupational therapy as well so she started OT to help with her fine motor skills. Around the time she turned 2, and wasn’t talking all that much, she started speech therapy.

Needless to say, it was A LOT of therapy.

We knew early on she had low muscle tone which was contributing to her motor delays but the expressive speech delay was a bit of a mystery. All of her therapists at Support By Design in Tribeca were amazing and constantly kept me up to speed on Vivi’s progress and what she needed to work on. I also often participated in the sessions, partly because I wanted to reinforce things at home and partly because Vivi had separation anxiety and would cling to me before sessions. Even though she didn’t speak very much early on, her receptive language was very good. We all knew she understood what we said, which was a very positive sign. 

At first, I wasn’t anxious for an official diagnosis because I knew the course of therapy would more than likely not change. Yet as pre-k approached, and I thought more about the best academic environment for her, I felt compelled to seek some solid answers. Vivi was beginning to struggle socially at her mainstream preschool because her expressive language delay prevented her from seeking out friendships and initiating play with her peers. I knew she had a motor coordination disorder that not only effected her gross and fine motor skills but her speech as well. It was time to put a label on it to gain a better understanding of what I was up against so I could figure out next steps and craft a longer term strategy. 

After appointments with a neurologist, developmental pediatrician and later, a neuropsychologist, the answer was becoming clearer: apraxia and some sort of processing delay, average IQ and a probable learning disability but too early to tell. Dyslexia, ADHD? Nobody could say yet because she was still so young, but both run in our families and very often with apraxia there is a comorbidity with a learning disability. Not the greatest news ever but very manageable with the right support!

Emotionally processing that my daughter was not an average neurotypical toddler was no small task but I  was determined and focused to give her every support she needed. One of the many wonderful things about living in New York City, are the amazing, best in class resources available: doctors, therapists, teachers, schools, social skills groups, extracurriculars, camps etc…you name it, many of the services in this city are absolutely top notch. 

Vivi stayed in her private preschool for pre-k with the help of the hugely supportive staff at The Barrow Street Nursery School, in addition to an amazing SEIT (Special Education Itinerant Teacher) provided through Early Intervention. With the guidance of this fantastic support system at school in tandem with her therapists, I was urged to research specialized schools with smaller class sizes and more support for kids with learning issues. “Special Needs” schools if you will. A little bit of a tough pill to swallow because we were zoned for one of the best public schools in the city. And also, the “special needs” label. Ugghhh.  It was hard. 

What I learned quickly though is that not all special needs schools are created equal and it was very difficult for me at first to uncover exactly what school catered to which needs. It’s an opaque process for the newly initiated and it requires a lot of time and research to pinpoint which place might be the best fit. School tours, message boards, meeting with current parents. Not only that, all of these schools are nearly impossible to get into!! The demand is high and there are only so many spots because the class sizes are small. Generally, people apply broadly and hope for the best.  I  crossed my fingers and said a few prayers because any of the options were better than the alternative of my sweet but shy, apraxic, potentially learning disabled daughter being swallowed up and lost in a public school ICT classroom of 35 kids. This was the case for Vivi at least, as recommended by her neuropsychologist, who aided us in narrowing down the options.  And here’s the even bigger rub, the yearly tuition is even more than the top tier mainstream NYC private schools. 

With that said, many of these special needs private schools are publicly funded so if your child “qualifies” (which generally they do if they’re accepted in the first place), the tuition will be paid for by the Department of Education. But lawyers often need to be involved and and it’s generally a whole big mess that makes no sense and with no guarantees. I’m actually glossing over quite a complex process but it’s too much to get into now. For those more interested in the process, I  recommend Regina Skyer’s,  How To Survive Turning 5.

There is a happy ending to this tale though. Vivi was offered a kindergarten spot at The Churchill School & Center, which focuses on kids with language based learning disabilities, and it has been an absolute blessing: small class size, constant reinforcement of speech and fine motor skills, amazing teachers and staff, and an overwhelmingly supportive community of parents. Vivi continues to blossom and is absolutely loving school and the connections she is making there. It’s kind of a weird feeling considering the initial heartbreak and heartache, but now I feel like we’ve won the lottery. 

This may be the end of this story but I know this is only the beginning of the road for us on this academic, social and emotional adventure. Vivi is the love of my life and whatever learning deficit she may have, I want her to not hide behind it, but purely acknowledge both her weaknesses and strengths, because every human has them. She needs an environment that builds her confidence and character so she grows into a strong woman, capable of handling life’s meandering twists and turns. Building this life will come with its challenges, but I am laying a strong foundation for her and putting together the framework. My baby girl will grow up, and somehow and some way, learn how to put all the pieces together.

*Feel free to reach out to me anytime about this process. Any and all questions are welcome: from Early Intervention to the doctors we saw, the lawyers I hired, the schools we visited etc. The above is really just a snapshot of everything we’ve gone through and I  am happy to offer further insight and personal perspective! kalexisgodley@gmail.com