This is the story of the journey with my son. While some of these things are considered age appropriate, I just want to give you a perspective of how paying attention to everything your child does is important as one thing coupled with something else could raise a flag.
My name is Destiney and my amazing son is Dylan. Even as a baby he was special – finicky, and wanted to be held constantly. He only ate small amounts of formula at a time. He wasn’t colic; he just never wanted to stay asleep or be put down. He was always low on the growth chart being 5lbs 14oz at birth which is partly my fault as I had a Tilted Septate Uterus. Although I wasn’t aware these were related symptoms – Hindsight is always 20/20.
My Initial concern began when Dylan was about two. He was a very late walker, late talker but he was so smart! Everything had to be particular. If his food was not in the exact same spot on his plate every night he would scream until you rearranged it to his familiar. The food could not touch or be mixed and if his cup and fork were in a certain spot and you moved it, he would have a meltdown until it was returned, His OCD outdid mine, I believe, (and that’s tough). His toys, especially cars (that’s what he had the most of), were lined up through the house, usually by color. He loved puzzles, kept his room clean lol (yes at 2), he hated messes, hated being dirty or sticky, had uncontrollable movements when he was overstimulated, and stayed on his tiptoes. He was very lovable yet very angry. He didn’t handle big groups well – family Christmas Gatherings were very much a stressor for him (too many people, too many sounds, too many smells, too much attention). There were times he would get so frustrated or overstimulated that he would attack me physically at age 2, 3, and 4. (Like head down, face twisted, arms out, full on charge). It was saddening and frustrating and I just couldn’t understand why he was so angry. He was loved, fed, clothed, bathed, attended to, and most importantly completely safe.
He was in Early Headstart at age one and then transitioned to Headstart. Once in the classroom setting, his emotional breakdowns and social awkwardness became increasingly apparent. He was still always on his tiptoes, refused to eat most meats and some foods (because of the texture). He had to start adding Pediasure to his diet to try and get his weight in range. Thank goodness he loves peanut butter and hard boiled eggs! He had various meltdowns at school if his peers entered his space or touched his belongings, projects, puzzles and schoolwork. A meltdown for my son in class consisted of tearing kids art work off walls, turning chairs, charging teachers, completely messing up play centers, dumping blocks, knocking over all the kitchen center items and ending with him crying under the tables. He had been such a great, kind, helpful kid that the first time it happened, his teachers called me with tremendous concern. I Quote, “I Didn’t Know Such a sweet little thing could do so much damage”.
So at age three in 2013, I made my first attempt in getting help for my son. It pained me to watch him struggle so much! I reached out to Early Intervention. As soon as the lady entered the house and began talking, I knew this was about to be a waste of time. She began talking about how everybody nowadays thinks their child is autistic and it’s not true…etc, etc. Needless to say my frustration was growing. She looked at my son, said his name and Dylan glanced at her BRIEFLY. Her response “Oh see he made eye contact he’s not autistic” and she got up and left. I was completely shocked and felt completely dismissed. I reached out to his family physician and they suggested that because he was smart, his mind was just processing Information faster than his speech and emotional awareness could express. This could causing the above behavior ripple effect; so I thought – Ok that could be a possibility. Hey, it’s coming from my doctor, right?
A few years passed, there were some promising changes and some not so promising. The charging anger fits did diminish as his vocabulary grew but at the same time his communication was a struggle. His emotions became quick to vary, he refused to wear -jeans, started not letting me brush his hair even the softest brush hurt his head, not any tangles pulling just the brush touching his head, brushing his teeth became an all-out war.
Dylan excelled in Kindergarten, straight As in Kindergarten terms, despite his quirks and mounting speech issues. He still had his meltdowns when triggered by kids. He still had sensory Issues, still walked on his tiptoes, became fascinated with numbers and sonic the hedgehog. He hated loud noises, stimmed when he was super excited, never showed much emotion in his voice unless he was angry. He still didn’t think he needed to sleep, was still a very picky texture induced eater and he became obsessed with little stuffed animals. I was still told his quirks were due to his intelligence.
I’m a very hands on mother; in 2014 I became a substitute teacher for HeadStart working with other children on the spectrum, and I just knew my son’s struggles were deeper than his Intelligence. I now had visual proof at work every day, yet I was denied because at that time Autism was bound by concrete symptoms which we now know are variable. Still I trudged on in hope of getting enlightenment for my son and me. I’m not one to settle when my spirit is not!
First and second grade followed the same pattern as kindergarten: he excelled in school, struggled at socializing, preferred to be doing a puzzle, drawing, or coloring. He became completely focused on numbers. If he saw a coin, he had to know the date it was made, how old was everyone in that year, how many years ago was it, and prices at stores. He wanted to know how many of an item he can get for this, etc. The plus side was the school he attended had the same class and same teacher for a two year rotation. In second grade he had a pretty serious, emotional meltdown so his teacher and I agreed it was time for an evaluation so I made the appointment. Here we go, time number two, I’m feeling confident and almost assuredly about to be vindicated and get the ASD diagnosis. On October 31, 2017, I got his results – above average IQ and an Emotional Dysregulation Disorder. They didn’t see him stim. My response was well then you didn’t stimulate him enough. I felt frustrated again and unheard again. They told me since he wasn’t having physical issues or interruptions of his grades he didn’t need any type of counseling.
My son started retreating into his own world. His attachment to his small stuffed animals became his priority. Everywhere Dylan went at least five had to come along. They all have names and rolls they play in his life and you better not touch any! If you didn’t pretend the way he did, you weren’t allowed to pretend. This led to struggles with my daughter. He becomes so upset when she pretended because the way she pretended just isn’t possible and he just couldn’t accept it. He constantly talked of only one friend at school but that friend was never allowed to come over, he was never allowed to go over there, and yet for two years he stayed fixated that this was his best friend. He had no control over his emotions, began grunting when asked what was wrong or was completely nonverbal just staring at me with a blank face. He really didn’t want to leave the house. When my son started second grade, my daughter started kindergarten. She is a social butterfly to an extent and one of her friends had a brother in first grade. We got them together they had fun playing video games together and every now and then they hang out but they don’t talk on phone or see each other often. Dylan is completely great with being with just his stuffed animals and his sonic fascination. When Dylan started third grade, he was accepted into the STEAM Academy which stands for Science Technology Engineering Arts and Mathematics because he had the grades and although he was super emotional he never physically hurt anyone else in school. We thought it was going to be the best thing for him. When I say the beginning of third grade had me completely flabbergasted, I mean a complete loss for words. I had no idea who this sweet quiet caring Boy was. He began yelling at me, disrespecting teachers, fighting with classmates, failing tests and started taking a shower as soon as he got home from school (water is one of his stress relievers). I got message after message from his teachers the first month of school who seemed confused that I was brand new to these behaviors. I even had to meet with the School Psychologist because every calm down/what’s wrong technique they tried was answered with grunting and crying. They did implement a break time system; if he shows his ‘I need a Break’ index card, he is given time to regroup. When he is calm and able, he flips it over to ‘Ready to Learn’. I spent time in tears myself what happened?? Dylan loved school, not necessarily the reading and writing, but most certainly the math, science, art, music and gym.
So again, I spoke with his Primary Care Provider at his 8 year checkup. She actually agreed with me that he should be screened because of his sensory issues, poor hygiene, and lack of communication skills the OCD and irritability/anxiety issues. So Dylan was referred to the busy and very corporate Medicaid counseling office. His Counselor was very nice, heard out my concerns and suggested his teachers each fill out a Vanderbilt Scale sheet. This appointment occurred last fall (2018). I started taking him to counseling. Anybody that has been to counseling knows they ask you to make goals. Dylan’s goals were: learn how to ignore his sister’s behavior, speak his feelings, and get better with leaving the house. I don’t mind my son’s quirkiness at all. I Love it. He’s very insightful, helpful, kind and smart .
When we returned for his third appointment, the counselor informed me that the doctors had decided he was ADHD due to the assessments from his teachers as well as having an Emotional Dysregulation Disorder. They set me up with a medical appointment. Still my spirit was just not quite right. My son is not ADHD. He’s calm unless triggered, able to sit and focus for hours, take his time, finishes puzzles and drawings, and most of all, he loves to be by himself. I cancelled the medical appointment and I continued my search for his enlightenment and freedom from the daily strain.
In February 2018, my daughter had a best friend who passed away at age 6 due to DIPG. Her grief mixed with her ADHD was exhausting as well. She started having a BSC with her in class. This BSC also did therapy sessions at the house. She observed the function in the house and tried to help me implement an award system fitting to both my children for compliance. So, even though she was my daughter’s BSC she listened to my concerns about my son and referred me to the doctor in her office who was not bound by corporate and insurance bullying for both of my children! At our initial appointment, we talked about our journey and disappointment to this point. The doctor observed my son while I did most of the talking. After the first five minutes, she looked at me and said, “He is definitely not ADHD and I learned that the Emotional Dysregulation Disorder they diagnosed my 8 year old son with is not even a valid diagnosis until age 18! Needless to say after the appointment was over and she without a doubt believed he was ASD Level 1 and had a generalized Anxiety Disorder. I was flooded with relief, panic, fear, hope and a bit of sadness. Finally, the thing I knew for so many years was presented to me because someone paid full attention to my son! With the correct diagnosis, there has been a world of opportunity open. Pending another assessment, he may be able to attend “The Amazing Kids Club “, which I’ve heard good things about. He’ll get the emotional support he needs and be more understood. Right now, his social maturity is below age appropriate, his response to his environment is below age appropriate and his expression and communication are below age appropriate, among other things. I just pray he can internalize, understand, try hard and flourish. I was told with his level of intelligence he was unknowingly able to manipulate the test leading to the incorrect second evaluation. The third evaluation was incorrect because of the EDD diagnosis and his fear of transition fueled the ADHD. Some behavior that he began the year with (He was Student of the Month for January because he had finally adjusted to the transition.
Of course, the struggle doesn’t end with the diagnosis, it only increases the hope that things CAN get better and that he can get some of the therapy and help he so desperately needs. He is not defined by the diagnosis or the struggle, he is defined by his desire to try his best every day. And on the days that aren’t very good, he knows I’m there!
by Destiney Boldizar
