Back in 2010, I gave birth to a perfectly healthy baby boy, named Jack. My OB at the time described my pregnancy and delivery as “textbook”. I was a young female age 20 and my husband was 31 years old. Neither of us had any health problems and came from boring families. 

We were so excited to welcome home our first child. I remember looking at him sleeping that first night and thinking about his future and the kind of man he would grow into. 

By 2012, I began noticing my son was different than other children his age. I was a nursing student learning about developmental milestones and began comparing him to expected milestones and to his cousin, 6-months his junior. My son seldom enjoyed being held, rarely cried, never babbled and wouldn’t even turn to his name being called out. I confided in my husband my feelings at the time. He dismissed them but said we should talk to his doctor during his next visit. 

I reluctantly asked his pediatrician about possible issues not wanting to sound overbearing or dramatic. I could tell her annoyance with a young, minority female questioning her medical knowledge from her eye rolls and sighs of exasperation. Eventually she agreed to refer my son to an audiologist if “it’s that big of a deal to you”, she said.. And yes, it was THAT big of a deal to me.

We took our son to audiologist who said that his hearing was normal. She stated that IF he was allowed to hum and move around during the exam he scored high. When he was made to sit still, he noticeably missed more on the exam. The audiologist noted that Jack’s humming helped with his sensory processing of verbal language and his ability to focus.

I was grateful his hearing was fine and we moved on to the speech therapist. Jack developed speaking very fast afterwards, but still had issues with engaging in a real conversation. He could express his needs and wants, but that was his limit. 

Jack went to three different daycares/ pre-k programs due to constant issues. His teachers were frequently critical of him and called my husband and I at least weekly to pick him up early. Jack had difficulty staying in his seat, focusing on his work, and hummed to himself often. The teachers described him as overly active and a distraction for others. 

During those early years, families and friends often offered unsolicited advice. Either they had a magic solution, we weren’t effective parents, our parenting style was flawed, or they knew someone who tried something and it worked so it would obviously work for us too. 

I felt like a failure, alone and depressed during those years. Jack didn’t have any official diagnosis despite countless medical visits, speech therapy and occupational therapy sessions. No one was offering advice and the schools were too busy to deal with him. They consistenly recommended medication. They wanted me to sedate my child instead of dealing with his needs.

At some point, I gave into the notion of medication. I asked his physician about medication and was told that Jack didn’t have any diagnosis for medication. I even went on my own to find a ADHD specialty clinic to have him evaluated. Again, he didn’t meet criteria for a diagnosis or medication. I was left on my own to navigate his care and education.

At no point, did anyone offer me resources or help. It was always the schools saying he was a distraction and to pick him up or the medical professionals saying he doesn’t need anything and send him back to school.

My husband and I were so frustrated, we decided to hold him back from Kindergarten another year. We wanted to give him time to mature and for us to help him acclimate to school norms. 

I stayed by my phone his first day of Kindergarten expecting a call to pick him up. I was relieved when he made it the first day, the first week, and eventually the call came. We meet with his teacher and other school personnel to create his IEP (Individualized education plan). The school had reviewed all of his prior medical records and we discussed a plan of action.

The funny thing with IEPs are they are never really adhered to in my experience. No matter the goals or solutions, the end result is always to put the child on medication and keep them quiet and subdued. 

My husband and I found ourselves again in a constant cycle of seeing specialist recommended by the school, calls and emails regarding behaviors known in his IEP (e.g., humming and fidgeting) and the constant hassle of medication. And again, the medical professionals left us without a diagnosis, medication, or resources. 

Each visit ended with an array of possible diagnosis but nothing concrete. He was often described as intellectual, curious, and either having autism, Asperger’s, ADHD, sensory processing, anxiety, a combination of diagnosis, or all of them; but, no one wanted to “label” him because he didn’t neatly fit any box.

I became angry and hopeless with the lack of answers and help we received. Without an official diagnosis, it was hard to gain resources to help him. Jack was never given the help he needed and teachers refused or were unable due to lack of knowledge regarding special education needs to comply with his IEPs appropriately. He was often bullied and seen as a distraction in class. 

It became apparent to me that the teachers just wanted him out of their class so they didn’t have to deal with him. Many of his teachers wanted to put him on a discipline track, so if he didn’t modify his behaviors to the norms of his classmates, he would be punished. It wasn’t like he was talking back to teachers or violent. Jack would hum in class, fiddle in his seat, and would take longer on his work due to spacing out or need the directions to be given to him differently. All of these items were addressed in his IEP and we spent time discussing his issues with all new teachers at the beginning of the year. But I guess it was taking too much time to deal with my son, so they just wanted him gone.

Many friends and family asked why Jack wasn’t offered space in the special education classroom. Interestingly enough, his unusual behaviors did not keep him from excelling in his grades and in class. He wasn’t considered to be in need a separate class according to the schools, but the teachers also didn’t want to deal with him in the class. Again, leaving him in a situation to be bullied and without lack of help/ resources. 

After years of changing schools and battles, we finally received a diagnosis when he was 12 years old. I had sought out a psychiatrist for another educational evaluation. Now that autism and Asperger’s were coded the same, Jack was diagnosed with Autism level I (high-functioning autism), anxiety, ADHD and sensory-processing disorder. He was finally capable to get specialized services. I was so happy when the diagnosis was made official. 

I’ll never forget the battle of fighting for my son to get the diagnosis and services he needed. It shouldn’t be that hard and it took consistent pressure and follow-up from my husband and I to have him properly diagnosed. The medical professionals and more importantly the schools let us down countless times. 

After his official diagnosis, we were able to look at different schools specializing in his needs, obtain ABA therapy (after a two-year waitlist), and obtain medications appropriate to his needs. I will discus autism tools, toys, specialized schools, ABA therapy and medications in a separate blog.

If you believe your child needs medical services or evaluations keep fighting for them regardless of how alone you feel. You know your child better than anyone else. Never give up on seeking the best for your child and never be afraid to stand up for them. You are not alone!