Hey guys! I am finally sitting down to write about all the emotions we, Joe and I, went through when AJ officially received his Autism Diagnosis at 20months old. If you missed the blog about our road to a diagnosis, I will link it here: https://wp.me/pbB0Al-66
Ok, so let me try and pick up where I left off on the blog linked above. I was emotionally drained, mad, and just in disbelief that anyone would think something was wrong with AJ. I know autism does not equal “wrong,” but at the time that was where my head was.
Anyway, as one could imagine, I cried on the drive home. Most of the day was a blur after the appointment. All I know is that Joe had to go back to work so it was just me, AJ, and my thoughts at home afterwards. I remember AJ was sitting in his play area and I was just staring at him with tears running down my face.
I kept telling myself to stop looking at him differently, but I couldn’t in that moment. I was trying to see what they (the doctors) saw. I had all these doctors in my head, particularly that developmental pediatrician who I despised. I was thinking of the future. Will he this & that? Oh wait . . . he turned the toy a different way, is that autism? What does that mean? What else is he doing that is an autism sign?
You see, I had no clue about anything autism. I saw it as a leech that was on my son. I didn’t see it as a part of his being. It was a label that I feared. I remember crying for days thinking about his future.
He was one year old, and I was crying about his play dates, school years, jobs, adulthood, almost anything you can think of for your child’s future. I remember talking to Joe about how angry I was about his diagnosis. I remember being fearful that every organization or school that saw his diagnosis would instantly dismiss him, look at him differently, turn us away, or look at him with pity.
What if Boy Scouts or sport teams didn’t accept special need kids? What if there are no activities for him to take part in and make fun memories? What if he gets bullied or never makes a friend? Will he learn to drive? Have a low paying first job that gives him the feeling of independence and that gratifying first check every teenager rejoices in? What if no one accepts him if/when they find out about his diagnosis????
As a mother, I NEVER want someone to look at my son with the “oh, I’m sorry” eyes or for him to face instant rejection. I want the world to see AJ and all his amazing abilities. At that time, I thought a diagnosis was that open door for the awkward pity moments to take place. With this mindset, our family wall went up (my doing, not Joe’s) and I was in defensive mom mode. I didn’t tell anyone. The only people who knew about AJ’s diagnosis were a handful of my friends, like maybe four of them, my mom and mother-in-law.
I wasn’t ashamed or hiding AJ from the world. I just didn’t make any announcement. I was a very “it’s none of their business” type of mom. In my mind, that is how I protected him from judgment. Whatever I shared on social media was factual and silly things AJ would do. I never disclosed his hard moments.
I did not need outside advice coming in or people looking at AJ differently. I wanted everyone to see AJ for his spunky quirks and achievements. I was worried if I disclosed his diagnosis, those pity comments would come in and I know I would be upset. I guess it was more of a guard for myself really. I was still processing a lot.
Another reason I was not comfortable sharing in the beginning was because I knew questions would come. What is autism? What causes it? Will he ever talk? etc. I didn’t have these answers. I was barely okay saying the word autism out loud. Last thing I needed was to teach others when I had to teach myself.
AJ was diagnosed on the severe end of the spectrum, meaning he would need a significant amount of care and support. I know many do not like labeling, but that was the reality for us. We started early intervention therapies and a special needs toddler group until his aba based class had an opening. Those simple thirty-minute toddler groups were so draining!
They included head bangs, eloping, crying, the whole thing! As a young mom with the child who had pretty intense behaviors, even in the special need’s playgroup, it was mentally and physically draining. At one point, I literally picked up AJ while he was having a full body meltdown and walked outside the class.
I didn’t care who saw or who I walked by, I just scooped him up while he was kicking and screaming and exited the room. I knew I was about to hit a breaking point and I needed to do that without everyone staring at us. I sat by the class door in the hall and just sobbed. His therapist came out and helped both of us work through our emotions. Once AJ and I calmed down, we went back into the class.
You see, they didn’t want AJ or me to end on a bad note. That would set the tone for future visits. AJ lost it when we went back inside, but I put my brave face on and just tried my best to keep him safe during his head bangs. They told me it was going to get worse before getting better and me being me, I just nodded and cleaned my tears in agreement.
That playgroup session concluded with AJ’s therapist advising me to look into support groups and therapy for myself to address my feelings of depression and isolation. Joe was gone all the time, we had zero family members around, and I still wasn’t talking to anyone about the hard days; not even my mom because I didn’t want her to worry. I was putting a fake smile everyday and it shattered in that hall.
I went through every stage of the grief cycle. The weird thing is, I knew exactly what step of the cycle I was on because I have a degree in psychology and learned about it. Knowing what I was going through didn’t help though. I still processed on every level. In short, I went from being in complete denial, to anger, to being sad/depressed, to giving some leeway to therapists, to being cautious in telling people (fear of judgment) and then coming full circle to accept and acknowledge the hope and joy my son gives me.
By the end of my grieving process, I no longer saw the label. I didn’t see autism as this life defining leech that would hinder AJ from living his best life. The kid lives his life in the purest form with no regard to social constructs. I am a little jealous of that.
I have come to see his many diagnoses (ASD, Apraxia, Developmental Delay and more) as a small part of him. AJ is his own being. To me, AJ was born with set characteristics and his diagnoses give him the ability to experience everything in the purest form or make him work a little harder to do so. When you see/feel everything around you at 100%, it can get overwhelming; hence some of his aversions/struggles.
Overwhelming? Yes. Life debilitating? No.
I try my best to build his team with those who see AJ first, then the areas he needs help with next. I also want to say it took me a year to get out of the sad/depressed stage. Once I healed myself, I was able to help AJ more than just driving him to therapy. I was awake and engaged, like he deserved from the very beginning. I can’t change that now, but I do my best to make up for that year and advocate for him as much as possible.
So how did Joe cope with all of this? Well, he did not go through the grief steps like me! I do not know if it’s because he was gone a lot of AJ’s younger years, so I took it harder solo parenting, or because Joe is a logistics man; he doesn’t sit in emotions like me. He was ready for AJ to receive anything that would help him live his best life and grow from day one without viewing it as threatening like I did.
Joe was the one who helped me get out of my sadness. He told me to stop looking for things because AJ was still our same baby boy. He was right! I was just drowning in a circle of grief that I lost sight of that.
On the hard days that had hour long meltdowns at every transition, and me crying because I didn’t know if I could handle another day of seeing AJ struggle, Joe would step in. He would respect me processing my breaking points and then when I was calm, he would point out areas where AJ made improvements. Highlighting the good and reassuring me that was because I was doing my best to help AJ grow and be there for him. I didn’t see it, but Joe did. Joe was the rock of the family and still is. I am forever grateful that AJ had him when I was lost.
Instagram Autism Diagnosis Q&A
Did you ever ask how or why?
Joe: I never asked why or how. To me there was nothing wrong with my son. I had never known more of autism except that it was a developmental disorder. To me, AJ was just delayed, and he needed help to get him to where he needed to be. The question of why or how never crossed my mind. I never sought something out to blame for my son being autistic, which is why I probably never asked the question.
Suhay: I asked why and how the day of his first evaluation at sixteen months. I was constantly wondering was it something I did during pregnancy? Was it the hard labor? Was it because I didn’t bond with him the first few months? Did I do something to make his life harder without knowing?
How did you come to accept it?
Joe: For me there was nothing to accept. A diagnosis didn’t change how I saw or treated my son. AJ was just AJ, diagnosis or not. If you know anything about him, you will know exactly what I’m talking about.
Suhay: I came to accept the diagnosis when I realized it was not an all defining word that described AJ. The moment I realized it was a part of his being and played a role in how he learns and process the world, I woke up. I went through every stage of grief to get there, but I got there. Mom’s who say they grieved when their child was diagnosed typically get slammed online. I am not afraid to say it. It’s the truth. I was not grieving my living boy as if he were gone (what people think), I was grieving the dreams I envisioned for him not knowing if they would play out. They definitely can, but in that moment of shock and fear, I didn’t see that.
How do you feel in protective parent mode if someone is not being patient or understanding of AJ?
Joe: I don’t think I have experienced this personally, but I will say being aware has given me a perspective on people’s ignorance. I have coworkers who make wise cracks about people being the “R” word and referring to them being autistic. The few people who know me and know about AJ understand that others ignorance does not bother me, but they are quick to put a stop to the conversation before I can out of respect for my son.
Suhay: I should say that I carry myself in a very don’t mess with me or my kids type of way in public. I’m just naturally momma bear mode when I am out with them. I’m not like that towards the kids though, like we will be doing us no matter what people think. I allow AJ to happy flap, gallop, whatever makes his heart happy. If I do come into a situation like this, I usually will lay the ugliest look on them with direct eye contact and ask if there is a problem. Most of the time that’s not needed though since we usually get quick glances and that’s all.
What were your initial reactions and how did you handle it?
Joe: I don’t think I had a reaction. When Suhay told me about his diagnosis, I processed all the information she had given me and proceeded to convince her that early intervention was necessary. I never concentrated on the diagnosis. I was told AJ was delayed and to me services would only help him.
Suhay: Hopefully, you read the blog and already know my response to this lol. If not, I got stuck on the label and fear paralyzed me in grief for a good time. I worked through it, but that was it in a nutshell.
If you made it through the blog, thank you for being here with me. Writing about our experience has helped me and if I help one person feel less alone, it’s worth it. Feel free to follow me on social media if you aren’t already and share with a friend who may need to hear these words.
Until next blog ❤
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