Brooklyn is our first daughter of three and is an extremely kind, affectionate, loving, responsible and ambitious girl who also happens to have GRIA 4. She adores her sisters, family, her Judaism, school and cheer. She wants to be a fashion designer or make up artist and cheer coach when she grows up and is planning on working her way through college at Starbucks. When Brooklyn was born she was always ahead of the curve developmentally. She rolled over the day she was born and immediately crawled up my stomach to nurse for the first time. At 6 months she could clap, play peek-a-boo, was standing, cruising and communicated very effectively with baby sign and some verbal language.

At about 9 months old we started to notice that her development was plateauing. At first we thought nothing of it and figured that it was normal, the other kids in her playgroup were just catching up. Then, at about 18 months old, her gymnastics coach starting tell me that there was something up with her gross motor skills. She was still too unsteady on her feet and her gross motor planning was delayed. Brooklyn, being my first, was perfect in my eyes, (still is,) and that the coach was crazy, (I continue to think that about most people.) At about two years old her Mommy and Me teacher pulled me aside and said that she was concerned about Brooklyn’s overall development: cognitive, language, and gross/fine motor. That’s when I realized that Brooklyn was no longer advanced or average. She was behind! At that point I called early intervention. They came out to evaluate and said her cognition was an 80 and you needed to be a 79 to qualify for services. Her language was dead average and their PT saw a lot of infantile reflexes but chalked it up to development. They didn’t seem concerned when I mentioned the trajectory of her development. Brooklyn was almost 3 at this point and her pediatrician told me that early intervention and I were crazy. There was “no way” her cognition was an 80. He said exactly what I wanted to hear. The test was invalid. I shouldn’t worry about her not qualifying for services.

I couldn’t get the nagging feeling out of my head, no matter how much I wanted to ignore it, that something was up. I went to the public schools and had her evaluated again. This occurred about 9 months after the initial early intervention evaluation. The school team confirmed her below average cognition, gross motor skills and, at that time, her language was in the low average range. She qualified for a free preschool program and physical therapy but not speech and language services. Again, the team chalked up my thinking that Brooklyn was a brilliant baby to being a first time mom. The following year, (age 4) I started noticing that she spoke as if English was not her native language. She would say things like, “You pick me up to school today?” I went back to the school speech and language therapist who told me that she’s in Brooklyn’s class weekly and has no concerns about her language. At the end of the school year, I had the team complete a phonological awareness assessment to see if, after 2 years of full day preschool, she had the skills to learn to read.

She bombed that assessment, but the school continued to deny her language services so I started private speech therapy. Brooklyn also started All Star cheer at this time. You will understand why this is relevant later in her story. When Brooklyn transitioned to elementary school she was reevaluated for special education services. Her language scores fell into the below average range, so finally, starting in first grade, (6.5 years old,) she would receive school based language therapy. This is a child who was 3-4 months advanced in her language skills as an infant. Brooklyn didn’t learn to read in K or first grade. Second grade was hybrid due to Covid. She really made little gains academically and physically. Her teammates at cheer who either started at the same time or years after Brooklyn were throwing far more advanced skills. Three years into cheering 2x a week for two hours at a time, she was still working on her cartwheel and bridge/kickover. They had backhand springs, could cheer on count and quickly learned routines. Everything was so much harder for Brooklyn. She’d be running around the mat, totally lost, having no idea how to perform the routine after a year of practicing it. At the end of second grade, the school offered to pay for Brooklyn to go to a private special education school for students with dyslexia. She was rejected because her language disability was too significant for their program. There were no other appropriate placements in existence, (in our state,) so her team and I developed a co-teaching program for her at her home school. The team also sent her to Boston Children’s hospital for an auditory processing evaluation. They found a very significant auditory processing disability and there is a definite disruption in how her brain communicates with her ears. We were referred to the learning disabilities program and did a full neuropsychological assessment. When those scores came out even lower than the school’s assessment we were referred to genetics.

We found out Brooklyn has GRIA 4 in December of 2022; about two months ago. Brooklyn is in fourth grade now, reading just below grade level. With the therapies in place, I can finally understand her meaning when she’s telling me a story and she’s the strongest base on her team. If you don’t know cheer, that’s a pretty big deal. Every skill, every accomplishment, every goal takes 2-3x longer for Brooklyn, but with her persistence, she gets there. Sometimes she gets sad when she sees what her friends and younger sisters are capable of, but we just remind her of all she’s accomplished with hard work and grit. Brooklyn is our miracle and we could not be more proud of her.