9 mins read

How this mama became a Special Education Advocate

 To say the journey of Parenthood has been different than I expected is a slight understatement.

I watched my friends get married in their 20s, start beautiful families and live the life I always pictured myself having. But for me I has a demanding Career which I loved and was determined to live my life to the fullest with no regrets before settling down. Relationships were distractions, nice distractions but still I never wanted to lose focus on who I was before having a family. I met my husband at the age of 33, he was also older and in his 40s before we met. We got married and immediately wanted to have children.

Our Daughter came first, perfect in every way, well you know she is my little mini me so of course she is perfect. Our daughter Grace seem t come out of the womb sitting up and well ahead of the other kids her age. She sat up, made eye contact, and seemed to acknowledge people and herself from the moment I held her. It was clear Grace was a deep thinker and spoke her first word at 4 months and surprised us all at 7.5 months speaking her first sentence. She then started to speak in Hindi with my husband and seemed to understand everything. At around 17 months I noticed she stopped talking outside the house, I of course spoke to our pediatrician who insisted there was nothing wrong, “she’s a prodigy’ he said. Then at age two her verbal responses to me were getting fewer, while she understood everything that was said to her in three languages and could follow directions, she used less and less words and those words were only in English. Again, I spoke to doctors, who brushed me off because she was well beyond where she should be for her age.

At the time we had an insurance plan that required referrals, and everyone seemed to think I was crazy questioning my child’s communication. When Grace was about to turn three I was 9 months preggers with my son, I was at the pediatricians office for Grace to get her flu shot, my husband joined us because I couldn’t fit behind the steering wheel anymore. I again said to the Pediatrician I felt something was wrong, to which he turns to my husband and says “she’s just being a neurotic first time mom, wait till the second one gets here”, they both laughed as if I was Crazy. My son George arrived, the most perfect little man ever, and I tried adjusting to my new world of a mom of two, but still feared something was going on with my daughter. Right around the same time my husband switched jobs, and our new insurance did not require referrals, I immediately upon getting the new policy number, called and scheduled Grace for a Speech Evaluations with an SLP.

The SLP asked a lot of questions, seemed to observe a lot and after several visits gave me an evaluation report and a diagnosis, Social Pragmatic Communication Disorder”. Seriously at first it sounded made up. I called my sister who works in early childhood education and she pulled the information from the DSM 5 for me. Sure enough she was like “wow this really fits her”. And after spending weeks researching everything I could find out about SPCD I realized this was real,  and I was determined at that moment to do everything possible to help her get what she needed to succeed in living with this.

I took my son George with me for every Dr appt, every speech therapy appt, every evaluation, he was just the happiest baby and I felt so grateful to have him and that with everything going on with our daughter what a miracle to have the perfect little baby boy to keep me positive. This boy made me giggle and after a year of Grace’s treatment I felt some relief, she was doing so well, she was making so much progress. Then just like that my world came crashing down on me. Covid happened. We all caught it the month before it was even a thing, and all 4 of us coughed so much it was like the soundtrack of my life for several weeks. My in laws arrived from India for an extended visit just in time for international lockdown, so yay me. And then came the lockdown. No school, no therapies, no appts, just stuck in our house, all 6 of us now trying to keep ourselves from going crazy. I seriously am thankful for wine and chocolate during these months as they got me through the insanity.

But while we were home, grateful we owned a bounce house for Grace, I noticed something, my happy perfect George wasn’t so happy. He stopped saying words, stopped eating like he used to, wasn’t the happy little man I knew. I started to worry, called the speech clinic Grace went to and scheduled the first evaluation I could, this took a couple of months because lockdowns, quarantines and the insanity of covid delayed everything. But after the evaluation the SLP says, he’s delayed and we should start speech therapy to give him a push. Nothing to worry about, it happens she said. So I was like, ok we got this, its got to be easier than what we have been going through with Grace, Boy was I wrong.

George wasn’t making progress, he wasn’t saying words at all anymore, but thankfully a very happy boy. We were able to get him in the same school as our daughter, small classes because of covid fears but we felt socializing would help him, but no. I questioned the SLP, who I cant really blame, in 6 months I think George got to see her 10 times because one of us was in quarantine. We even had a OT eval done, where George used the words no, and lets go several times. He made eye contact and was clear about what he was doing. So I felt positive, but six months later still no language process. I started to do some research and kept coming across articles on CAS, Childhood Apraxia of Speech. I asked the SLP about this, she assured me he was just delayed. Well after another six months goes by and ruling out all other physical causes, the SLP says to me after doing a feeding evaluation to check for tongue movement, that it appears George might actually have CAS. I was mad but tired and at the point of trying to find answers. Mind you, still dealing with Graces SPCD, and her starting Kinder, which brought on an entire different group of problems, learning curves with the insurance and the School district, as well as getting the ARD process started and fighting the good fight for an IEP. It felt like getting Grace settled in school, only prepared me for the next battles with George. Now 3.5 years old we did everything we could to get his diagnosis determined, treatment plans, start the school district fight for him all while waiting for neurologist appts, Nuero/Psych evaluations, MRIs, genetic testing, the list and months just kept going.

Finally with Grace at 7 years old was thriving in speech, academics and making progress socially. George at 4 years old finally has official Apraxia Diagnosis, he was getting private speech, he was in the school districts early Special Ed program, also getting lots of services there. While we have ruled out a lot, we are still awaiting the next steps for moving forward. I decided to go back to school to study law so I can become an advocate for children like mine, because before having kids with additional needs I never knew the fight parents have. My mission with sharing my story is to let others know You’re not alone, many parents start this journey feeling like no one gets it. And to help other families navigate the IEP/ARD committee processes, IDEA and FAPE.

I remind myself daily that the journey has been different than I ever thought it would be, but I wouldn’t trade these kids for anything in the world, they make me who I am, and I love them more for being the bravest people I have ever known.