When everything changed…

For the first year of Quinn’s life, everything felt more than perfect. We looked like we were rocking life and living the dream. I got a promotion at work. Mike’s start up company was doing well. Ty was rocking Montessori school. Quinn was such a sweet and chill baby. We looked as if life couldn’t get any better.

I was always worried about Quinn but everyone dismissed my concerns because I was a natural worrier. To me, she was always…. a bit different.

• She was sleeping through the night by 2 weeks old.
• She would go overnight with a dry diaper at 3 months old.
• When she entered daycare at 3 months old, she refused the bottle for a solid month. 
• Quinn eventually took a bottle but only from one specific daycare staff and in the same dark spot. When she graduated into the next classroom, they had to return her back to the same staff in order for her to eat.
• She wasn’t speaking or even cared to gesture when she turned 1 years old.
• She didn’t seem to care if I left the room or not.
• It was very hard to get her attention or get her to look at what we were doing.

Everyone would tell me “Stop comparing her”, “She’s fine”, or “Everyone develops at their own rate.” That’s my lesson on trusting my mother’s intuition.

BirthTo3

Fast forward to her one-year-old appointment. That’s when our pediatrician took my concerns seriously. I was answering “no” to a lot of her developmental questions, specifically around speech and communication. “If you’re open to it, why don’t we try BirthTo3, just as a precaution?” The doctor really thought Quinn might not need it but maybe BirthTo3 would give us pointers to get Quinn to speak more. Quinn made good eye contact and was generally a happy chill baby.

BirthTo3 is an early intervention program provided by Connecticut State to come into the home or daycare and teach caregivers strategies to get your child to meet his/her milestones. This service might be called a different name under your state. At the first meeting to determine eligibility, Quinn had to exhibit delays in 2 or more in the following areas in order to qualify for this service.

• Cognitive Development is the child’s ability to learn and solve problems.
• Social and Emotional Development is the child’s ability to interact with others
• Speech and Language Development is the child’s ability to both understand and use language.
• Fine Motor Skill Development is the child’s ability to use small muscles, specifically their hands and fingers, to pick up small objects, hold a spoon, turn pages in a book, or use a crayon to draw.
• Gross Motor Skill Development is the child’s ability to use large muscles. (ex: jumping, climbing). 

Quinn showed delays in all areas except cognition. They quickly set us up with Jeannie, our first coordinator. Jeannie and I developed a great relationship from the beginning. I was thirsty for actionable items to work on and took each session seriously. She was a special needs mom herself and we really connected on a deeper level. She was an integral part in shaping my mindset and teaching me how to advocate for Quinn.

We had a team meeting every quarter and it became clear that Quinn couldn’t meet the small goals we set for her. An occupational therapist (OT), Stephanie, was added to Quinn’s program and we also got along well with her. She worked Quinn hard with climbing stairs and puzzle work, as well as independently eating and dressing. By the one year anniversary with BirthTo3, Quinn was delayed in all 5 areas. 

Stephanie and Jeannie were convinced that Quinn just had low muscle tone and that was the reason for the delays. However, shortly after Quinn turned 2, Stephanie flagged something that revealed another puzzle piece of Quinn.

Epilepsy

It was just after Quinn’s second birthday. I was working full time with a 1 hour commute while Mike worked on his startup business from home and was the main caregiver for the kids. Mike was noticing these behaviors in Quinn, but didn’t know what they were. She looked like she was falling asleep. Stephanie (OT) was at our house doing therapy when she noticed Quinn doing it. She told Mike to immediately get it checked. Since these behaviors were unpredictable and I was working a lot, I hadn’t even seen them and had no idea what Mike and Stephanie were talking about. So he recorded them and emailed them to the pediatrician, who immediately referred us to the neurologist. One appointment and an EEG later, we had a confirmed diagnosis of epilepsy for Quinn.

Quinn’s seizures are very subtle. They are called generalized absence myoclonic seizures. They are very quick seizures and to the untrained eye can be unnoticeable. Her head would fall down and back up as if she fell asleep for a quick second. Then she would continue like nothing has happened. If the seizure lasted a little longer, she would fall or collapse on the floor. A lot of people would not have noticed her seizures if we didn’t point them out. So in that way, it’s been nice. We are able to avoid a lot of questions.

My hunch was she had always had them, but we didn’t know until she started falling. In the beginning, before we found medication that would control the seizures, she was falling all over the place. Mornings were worse. When she got sick, the seizures were worse. She had so many face plants that she was always sporting a bruise on her face and legs . When her seizures would occur, her whole brain would shut down, so all of her natural reflexes to block a fall were completely gone. It was such a stressful heartbreaking period having to watch your child get hurt over and over like that.

They were unpredictable and happened maybe 20+ times a day. It started out with just mornings when she would be unstable. Then it was throughout the day.

We held her a lot. She was 2 years old so it was hard but doable. When we couldn’t hold her, we strapped a bicycle helmet on her. She looked cute wearing one so no one questioned that. We let everyone believe whatever story they want to believe.

It took about a year before we found the right medication cocktail that gave us some relief from the falls. It was a relief even though she still had seizures. The next hurdle was to get to 0 seizures and managing side effects. Quinn experienced hair loss, loss of appetite, extreme fatigue, extreme moodiness, early onset of body hair, low blood count, etc… It would take us another 2 years to fine tune things so that we are where we are now, at almost 0 seizures. She was 5.5 years old when she had an EEG that, according to her neurologist, “was like a normal 5 year old’s brain.”

It got dark real fast…

Shortly after the epilepsy diagnosis, our daycare was expressing a lot of concerns about Quinn’s falls being a liability. Our neurologist heard about this and connected us to the Epilepsy Foundation of Connecticut, who set up a session to educate her teachers and the director of the daycare on epilepsy. With their help, we were able to calm almost everyone’s worries and keep Quinn in the daycare.

Our 3rd child, Eli, was born a month after her diagnosis in April. A few months after that, Quinn received an Autism Spectrum Disorder (ASD) diagnosis (August 2016) and we had to switch to a different BirthTo3 agency who could handle a more intense therapy program. So we had to say goodbye to Jeannie and Stephanie. 💔. We were also meeting with a lot of specialists to try to gain more information about her Epilepsy (i.e. geneticist, nutritionalist, naturopathic doctor, etc). In January 2017, Quinn turned 3 and BirthTo3 had to end so the public school would take over. And a few months after that, our oldest was diagnosed with ADHD.

So yes, my mental health took a real beating during this time. I did not return to work after Eli was born and remained a stay-at-home Tiger Mom. 🐯 We pulled back socially too.

…but the future is bright.

By 2019, our whole family with the exception of baby Eli (give him time 😜) was enrolled in some form of therapy. We were practically running a pharmacy in our home to handle all the medical needs. I complained about this to my therapist and after she laughed, she reframed it by saying that we were going to be the most mentally healthy family in the town with all this therapy.

It’s 2020 and our work is nowhere near completion. But upon reflection, I have grown so much and learned so many new discoveries about myself, human behavior, and life. It was the main reason I started this blog. It’s been therapeutic to write and self reflect how far we’ve come. I enjoy documenting our journeys too. It brings me so much joy to hear how my stories and tips have helped other people. It’s also a way to give people a glimpse into the world for families with special needs.

I am so thankful for the families that came before me. We have no idea that special services such as BirthTo3, the Epilepsy Foundation of Connecticut, or the public school district are available to help families like ours. These programs and the people who do these jobs are so vital to us. Not everyone is capable of advocating for their child with special needs alone or figuring out what’s the best course of action for them. We’ve definitely met quite a few angels on our journey so far, many of whom pulled me out of the darkness and reminded me there is still light in the world. Most of those angels still remain in my life and I know I will meet more down the road. 🤗

I hope this recap gives you a bit more background into how we got our start into the world of special needs. It’s a REAL onion and we still have a lot of peeling to do. I plan on going into more detail with later posts but if you have a question or topic upon which you’d like me to elaborate, please comment below. I definitely don’t have everything figured out but I hope you will join me as I share my life lessons. My husband and I both come from technical backgrounds so we definitely try to strategize and approach each hurdle with science, logic, and a lot of lucky accidents. 🤓