My biggest Mistake as a Mom.
This is probably the most passionate thing I will ever blog about. I know there is a mom that needs this information, because I was that mom. I was the mom googling over and over again. I need this to reach that momma. I need that momma to read this information so she does not have the same regrets that I have. The regrets that tear me apart daily. I am going to take you through the last 6 years of my life, but more importantly my son's life to share with you what took place. I know multiple mommas going through this same unplanned and scary time of child development and I want to give you the whole story so they can see what happened and why I am so upset with myself, but so proud of my boy!
Our son, Emmet, was born just 2 weeks before mine and my husband's second wedding anniversary. He wasn't a planned baby, but once we were over the shock we were terribly excited. My husband and I desperately wanted to have a little boy so he was a dream come true for us. He was born while my husband was still active duty in the Army. We decided it was best for my husband to transition out so we could raise him back home around family.
Emmet was a needy baby. I had many nights where I couldn't understand why people had so many children willingly. However, he was healthy and beautiful and I felt blessed to be able to call him mine. I always dreamed of being a mom.
Emmet's doctors appointments were usually pretty standard. That was until his 18 month check up.
As a new mom I was pretty on top of all of the trends and information. As we know there is a ton of information for mommas! So, I was aware that he was supposed to have 5-10 words by this check up. Of course I asked the doctor as well as filled out a questionnaire about him. The appointment went well though! We got some information about speech therapy if we wanted to go that route and the appointment was over. As my husband and I gathered our things and left the examination room the doctor shouted down the hall at us on our way out, "Oh, by the way. He is showing some signs of Autism!"
Out of the exam room with no time or space to follow up on that statement we were left with this seed of information that felt like an elephant in the room. We were blind sided. We went out to lunch and stayed in complete silence for what may have been way too long had we even realized it was happening. We were already grieving his future and what our dreams were as parents. We didn't know anything about Autism really so it felt like a terminal illness to us. I know that is dramatic, but we had just became legal to drink to provide a perspective on how young and naive we were.
As soon as we got home I called the state's Early Intervention Program. The people that came out were throwing around lots of different words like: Delayed, Disabled, and Special Needs. As a 21 year old mother I was sick over it. I felt like a failure. I thought our lives were over. I just saw my beautiful boy and wanted to fix whatever was happening and make him normal so we could move on from all of this.
I spent every moment I wasn't at work googling about different speech related issues, child development, looking at other mom's stories, finding resources. Just about whatever I could find! I would often go through the list of Autism symptoms and use what I found to test him or carefully observe what he was doing to compare to the things I read. I often used this same technique to test other children without anyone knowing of course. I was comparing those kids to mine to see if there was something I was missing.
It was exhausting.
Early Intervention recommended a therapist, but it wasn't for speech. It was for Development in general. He was so delayed that they didn't think speech would help yet.
However, I am so thankful that is how he was offered help, because that gave us the best therapist, for him and me. Kelly was Emmet's therapist from 18 months to age 3 when he was no longer eligible for the program. I spilled it all out to Kelly! Everything I read, what I thought, how I felt, all of it! She was the calm in what felt like my darkest days internally. When no one else I knew could provide advice or a way to tell me to calm down since they had no idea what I was experiencing, Kelly did.
Kelly gave me her thoughts and her opinions based on her experience. She helped me understand the terminology I was anxiety ridden over. She helped me learn strategies to help my son. She was my saving grace.
Thanks to her I was able to numb myself to the fears I was experiencing and reel me in to be solution oriented. Thanks to this I saw all of this from a different perspective and I started advocating, and I advocated hard!
I realized my biggest fear regarding a diagnosis was the fear of the unknown. With just about any child development condition there was a gray area where every child fit differently. I live in an instant gratification world and I was impatient to find what my son's future would be. However, with this new calm I was not a "what will the future be?!" mom, I was a "I will make the future great" mom!
This is about when Emmet was 2 years old. Emmet was 6 months into his therapy sessions and it was becoming obvious how difficult of a time he was having. Other moms and other kids would ask about why he squealed and why he couldn't talk. We weren't able to take him out of the house because he was experiencing frequent melt downs and angry outbursts. Was I embarrassed? Honestly, writing this now I am embarrassed to say that I was. I am regretful about many things that took place.
This is also about when I went on an obsessive journey to find something wrong with Emmet. Something that would make this make sense. A diagnosis of any kind!
I was using all of my off days to take him to appointments. Audiology came back clean twice, his pediatrician saw nothing to indicate anything, however his neurologist was where things got pretty in serious.
The neurologist visit came after a BBQ we hosted where Emmet fell asleep on a swing then spent the next 4 hours with an unbreakable fever. I don't remember where this idea came from, but I thought it might have been a seizure. The neurologist did confirm that the information I shared was accurate to the invisible seizures I thought could be present.
Thats when we went for multiple tests at St. Christopher Children's hospital. Emmet was sedated twice for testing. Then we were sent home with a wild set up (Pictured above) for a 3 day long EEG. This testing took a few weeks to get completed. I hate to say, but I was actually hopeful my son was having invisible seizures.. how awful is that? I was just hoping someone would know why my boy wasn't talking. I was hoping it was something that could be treated and he the words would just start flowing!
I just wanted to talk to him. I wanted to teach him things. I selfishly just wanted to hear him call me Mommy and tell me what his favorite color was.. I am tearing up at just remembering these things because I can still feel the fear and hopelessness. I was trying everything. Changing his diet and constantly making sounds at him. I was juggling his appointments and his tantrums of frustration because he couldn't express his needs. I just wanted to know that everything was going to be ok.
The Neurologist follow up came and it was determined that Emmet was not having seizures. Everything came back normal. His Neurologists then asked me, "Have you ever heard of Autism?". How badly I wanted to say, No Dr. Dip-Shit I live under a rock. However, that gave me what I needed. It was time to find the next outlet to help my boy.
I knew from my extensive and obsessive googling that whatever my boy was dealing with at this point, It was definitely a developmental issue and the best things you can do for that is getting help and getting it as early as possible!
I was finally given the information to seek an Autism diagnosis. We had to schedule with Children's Hospital of Philadelphia's Developmental Pediatrician's office. To which I found out was a year long wait to get in. I was not happy about the wait, but I was determined to get him the help he needed. We were maxed out for what he could receive at this time, but a diagnosis could open doors for more services.
That's when something AMAZING happened. Mid session with Kelly, which sessions usually included playing games and activities with him, Emmet said his first word. It was out of no where as we were getting ready to go a new activity that he just blurted out, "BA-BL". Kelly and I just held our breath for a moment and looked at one another. I don't even remember who asked, "Did you hear that, too?!". Of course we both celebrated with him and blew all the bubbles.
2 months later Emmet aged out of Early Intervention and no longer got to have Kelly for services. However his vocabulary was up to 20 spontaneous words by the time of our last session. We still exchange Christmas Cards. She will always be a core memory for us and I will never be able to express just how grateful I am for her.
In New Jersey at 3 years old children are transferred to their school district to continue services. Kelly actually came with me to the first meeting to discuss the plan to stick up for Emmet.. I now realize that was completely volunteer on her part which just makes me want to break out in tears knowing how much she cared about my boy. However, it was almost unnecessary for more than just moral support for me. We are extremely lucky with our small district. Emmet was sent to school at 3 so he could be assisted in a classroom setting and offered services at school. Above is the photo of his first day getting into a carseat on the bus by an aid that the school provided for him. My momma heart was not crazy about sending my boy out, but it was 2 weeks from by due date with our second and I knew this would be good for all of us.
Emmet's Teacher, Amanda, and her sister, Jen, who has Emmet's aid took Emmet in to their classroom of 4 year olds and were so helpful and involved and so great at communicating what they were seeing and what their ideas were. Emmet also worked with his speech therapist Michele who built such a great relationship with him and worked with him so well.
These 3 were the best hands we could have been transferred to from Kelly. They made this entire experience so comfortable and I trust them and thank them so much for the time and effort they put into my boy, but the care and love were beyond what any parent could ever ask for.
Like how often do you hear of a student going to their therapists wedding? Or a class aid coming to their students birthday party and giving them all the things to make their first visit to Disney even more magical? No where. I have never read about that anywhere, ever!
I am crying. I am actually crying.
By the June of that school year we had finally got in to see the developmental pediatrician. Emmet was still delayed, in many things, but he was able to speak. He gained a full vocabulary and was making friends, he was expressing his needs, he was progressing and confident and happy and the list goes on!
I wasn't sure what we were going to experience at the appointment or what the doctor would say. I was just preparing myself for anything and being very honest and giving all the details of what our last 4 years had looked like.
I wasn't fearful any more though. The terms used to categorize him for medical or educational purposed no longer effected me. I was able to breathe because of all of the support we had and the amazing people that were helping him.
When the appointment was over the results were in.. nothing. He had nothing. I reiterated all the things I said again and she said based on her findings and her interaction with him in that 2 hour appointment she felt he was just a late talker.
A late talker.
That was a term I never heard before. Never found on Google. Didn't even know was a thing. The way it had been expressed to me was that there was always a reason. Here I was finding out there was no reason.
After that appointment Emmet stayed in Speech and progressed in school, still behind his peers due to his delay, but progressed well. His personality was finally showed and it turns out he was an entertainer, a comedian, a great friend, a compassionate and selfless little boy, he was extremely empathetic and a light in every room.
Emmet was able to tell me he loved me and call me Mommy. Although I was "Nonny" for a solid year. All his wins weren't just "that's cool" his wins were a celebration. Every new word, sound, and skill was a victory.
Our life leveled out. His additional help became our normal, his speech therapy was just something he did. As he has grown he has become the biggest light of my life. He is everything you could ever want in a son.
He turned out to be an incredible artist and loves video games and playing outside. He loves wrestling every year. He also changes his mind about future plans quite often. To which I could tell past me his future is so bright he has option.
He has made huge strides in school regardless of the 2 year gap from the pandemic and his delays with speech.
This week I had a meeting that inspired this entire blog though.Tuesday, his speech therapist, Michele told me during a meeting that Emmet no longer qualifies for speech. He graduated Speech!
Did we celebrate this news? Kinda. You know what is interesting though? It was sad in a way. I didn't realize we were ready to be through with speech. As a momma I have understood everything he has said from his first "Bu-bL"... well almost everything. I was a little surprised to hear it was over. He was really sad by the news as well. He loves Michele and I made sure she got to tell him first since they’ve grown so close.
However, the point of this is not just to tell you our story. If you are a momma in the midst of this, your story may be very different. You have seen lots of stories online I know it. However, I need to tell you something.
I am PROUD and I am ASHAMED of myself.
I am so proud of the things I faced, the way I faced them, and the way I advocated for my boy.
However, I spent so much time with anxiety, fear, embarrassment, googling, testing, observing.. and everything else my memory has erased. You know what I didn't do? I didn't enjoy him.
I was a mom. The one thing I had dreamed of being since I was a little girl. I used to pray over baby dolls and hoped they would come to life so I could take care of them. This was it. It was my time. This was my dream!
But there it was.. and I forgot to enjoy him. I wish so badly I could go back and tell myself to shut up, to put my phone down, to just love him and soak him to be proud of him to be thankful that the only thing that we were facing was a silly speech delay. How could I be so ungrateful to not be thankful that my child wasn't facing so many other awful unfair things I see other children and their parents are facing? How could I not see how lucky I was?
But again, I am proud. I did everything I could to make sure he had everything he needed. The hours I spent researching and scheduling and talking to experts. I wanted the best outcome for him. I wanted him to live a beautiful life. I ensured he was going to be what he was called for. I did and I succeeded.
So, Momma if you made it this far, you needed another story. You needed a mom to slap you. Fight and Breathe. You are doing amazing. You made it here because you love your baby and you care so much about them. I am here to tell you though, do not get yourself so crazy that you forget to soak them in. The future will come and you will find out regardless of what lies ahead EVERYTHING is going to be ok. You can't control much of it, you can't see what your child's future will be. Just look at what is here with you now. You have a beautiful gift and I hope you enjoy him/her before their toddler years fade. I don't remember so many things that happened outside of therapy and doctors of my son's toddler and preschool years. I wish more then anything I could do it again knowing it was all going to be ok, but I can't. It's gone.
Don't do what I did.