A Letter To Everyone Who Says My Kid Seems Normal

Every time I talk to someone about Killian and how he has been diagnosed with High Functioning Autism, I get the same response. “Oh, but he seems just fine.” “Really? He seems like a normal 4 year old.” “But don’t all 4 year olds act that way?” “He’s fine, he will grow out of these behaviors.” And so on and so on.

You say that all kids have a hard time touching the inside of a pumpkin when carving a jack-o-lantern. You say that all 4 year olds have an attitude and tantrums. You say that all boys are hyper. You say that he talks just fine.

I want to tell you this.

Stop. Just stop.

I don’t need to hear your skepticism. You have spent 5 minutes with him. I spend 24/7 with him.

What you don’t know is that it took us an hour to help him touch the pumpkin guts. It took hand-over-hand to get him to do tiny finger pokes into the gooey mess. We held our son as he screamed and cried because touching the pumpkin innards caused his whole body to “shiver” when he touched it. You didn’t see the patience my husband had when creating elaborate stories about having to do surgery to save the pumpkin and needing to fix its heart. You didn’t see the mental exhaustion and frustration we endured to just have him stick his hand in a pumpkin.

What you don’t know is that for a year, he has been working on touching different textures and being able to just finger paint without the sensation hurting his body. What you don’t know are how many occupational therapy sessions it has taken for him to be able to accomplish this small act of a “normal” childhood.

What you don’t realize are all of the meltdowns we endure on a day-to-day basis. More than they typical toddler. I bet your child doesn’t scream and cry and tear away at his clothes because he got a few drops of water on the sleeves of his shirt while washing his hands. Or how I can’t take him to the splash pad with his friends to play because water got on his swim suit and having the clothes stick to his body causes him so much anxiety that you would think the world is literally coming to an end all around him. That he will have sudden bursts of emotion that don’t pertain to the situation he is in and become angry at everyone around him because they don’t understand what he is feeling or why it is happening.

You don’t see how he can be so calm and mellow and out of nowhere he is throwing his arms around while flicking his fingers together, kicking his legs, and yelling random sounds. You don’t feel his limbs hitting and kicking you so suddenly that you have no time to react and block the advances. You have never seen how he runs at full speed and crashes into the nearest object or how long it has taken to get him to only crash into soft objects like a bed or couch instead of the wall. You haven’t been tackled while doing the dishes by him because his body “felt like it was going to explode” if he didn’t get that hard pressure hitting his body.

You hear him having a conversation with you and using big words., but have you actually stopped to realize that he is only talking to you about the subject HE chose? Have you noticed how he won’t look you in the eye when he talks to you? Or what about the fact that he acts completely oblivious to your existence if you bring up a topic he has no interest in. And I’m sure you still haven’t noticed that if you initiate a greeting then he will get angry and growl at you, despite the fact that he was just in the happiest and friendliest mood.

What you don’t realize when making these comments to parents of kids who “look fine” on the outside or are having a good behavior day, is that you negate everything we have worked so hard for. You remind us of all the doctors who have told us that there is nothing wrong with our kid even though we know there is. You are basically telling us that we are overreacting and causing more stress and chaos in our lives than there really should be.

We have fought so hard to get to where we are today. We have gone through hours and hours of testings with specialty doctors, therapists, and school educators. We spend more time trying to help our kids succeed in the simplest tasks that to your kids has come so naturally. I’m sure your 4 year old can tell you he needs help. Mine can’t do that on his own. He throws the object and screams that he can’t do it. We have to tell him that when he can’t do something on his own that he has to ask for help. We have to coach him on how to ask for help. He will be 5 in 3 months and still has to be coached every single time. Not just here and there. Every. Single. Time.

So please. Before you start trying to tell me that you don’t think there is anything “wrong” with my son, think about how you are only seeing a tiny glimpse into our life. Remember how hard we, as parents, are struggling and fighting to make what you are seeing, an all-the-time occurence.

We really don’t need more people in our lives throwing skepticism our way. We just want to know that you care for us and will support us, even if it’s just with kind words.

-The Lazy Mama

The Results Are In!

It finally happened! After pushing and fighting for my son for so long, the ADOS was scheduled! The Autism Diagnostic Observation Study is a 2-3 hour where they have a script of things to say, ask, or do with certain toys or objects and write down word for word what the child says or how they respond to the situation. Dr. G would bring out a tiny doll set with a mommy, daddy, brother, and baby and then create a situation for them like saying, “Uh-oh, the baby is crying.” Then wait for Killian to respond, if nothing happened she would repeat herself saying the exact same thing. She used different scenarios and would write his response. Then she brought out a few random objects to see what he would do with them. One of them was a CD and Killian was overly fixated on the colors as the disc spun with “atypical visualization.” He would continue to spin it and intently watch in silence and was seemly oblivious to what was being said and done around him. During the Lego portion he would ask for more pieces without making eye contact and instead hyperfocused on the dragon that he was creating. Dr. G would not respond to him the several times he asked until he would make brief eye contact and tell her he needs more pieces, then she would acknowledge his statement and reply.

During the make-believe portion of the test, Killian had a very difficult time pretending that one object was something else. He did not respond well to social intrusion and would become upset if Dr. G would try to play along with him. The dolls were always referred to as “that guy” or “this guy” instead of by name or pronoun of mommy/daddy/sister/brother. When she would grab the disc and say, “This is a space ship,” Killian would reply with an irritated voice, “No, it’s a disc.”

He exhibited functional play with cause-and-effect toys and throughout the entire 3 hours his sentences were disjointed and sometimes incoherent even though his words were said in a correct fashion and included some complex vocabulary. He would engage in brief conversation but usually it was only with topics of his choosing or interest, otherwise he would ignore or even start talking about something completely off topic. He showed zero interest or even recognition in Dr. G’s feelings or emotions when the social press portion of the exam took place. His eye contact was fleeting during the Reciprocal Social Interactions segment. His imagination was limited in play and in the end he met the cut-off criteria for Autism in the ADOS-2 classification.

Based off of my large family history of anxiety and the results of the DSM-5 questionnaire that I and his teacher, Mrs. E, filled out, in addition to the behaviors witnessed during the ADOS, Killian tested positive for Autism and Generalized Anxiety Disorder. His anxiety results showed high levels during social peer interactions and communications.

Killian was also diagnosed with Sensory Processing Disorder and ADHD (Attention Deficit Hyperactivity Disorder). Ya, I know, It’s a lot. But you know what? The second I got off the phone with Dr. G and I had conformation that proved my claims correct, I printed up the copies of his ADOS progress notes and diagnostic results and I danced around my front room. I felt like I could finally breath as a huge weight had been lifted off of my shoulders. My heart didn’t feel as heavy and my stress melted away. I finally had answers and reasoning! I finally had proof!

Now, this is going to sound really bad but there is truth in this. Autism is “The Golden A.” As soon as that diagnosis has been given and the child has been labeled as Autistic, your world has COMPLETELY opened up to specialists, therapists, school mandated assistance that the law will crack down on to make sure that it is being held to the letter. An IEP will be written and I PRAY that he will be given a one-on-one aide at school, even just part-time for the most troublesome parts of his day once he starts Kindergarten in September.

And as happy as I am with all of this, I am also extremely overwhelmed and my anxiety starts creeping in. I start wishing that I had a personal assistant to help me schedule my life. We are now adding ABA Therapy (Applied Behavioral Analysis) to this schedule along with speech therapy and an audiology screening. I am having to call and find people who accept his insurance AND are accepting new patients. I have to fill out even more paperwork for each of those places and add him to the waitlist hoping that a slot will open up for him before he ages out of the specific program that would be best suited for him. I am trying to figure out when we can schedule appointments around school, behavioral therapy, chiropractic care, occupational therapy, little brother’s speech therapy, and the everyday doctor’s appointments like dentists, general practitioners, and pediatrician appointments.

This is all just the very beginning but I am happy to be where I am now.

And then the realization hit that I still needed to break the news to my husband. The man who hears the word Autistic and only sees the kid flapping his hands in the corner of the room while rocking and making the same loud sound over and over again. The man who thinks that Autism means that the child is mentally retarded and can’t do anything. The man who told me he didn’t want to put a label on his son when I told him about the ADHD diagnosis and said that it doesn’t matter because it won’t change how he is with him and then said he doesn’t want to talk about it. The man who used to tell me that everything that was wrong with Killian was my fault and that there is something wrong with me.

To say that my anxiety was in full blast was an understatment. I didn’t know how to tell him. He can be a conspiracy theorist when it comes to doctors and will say that they don’t know what they are talking about and are only trying to get money out of you. I was scared that when I told him, he would respond with all those thoughts and reactions geared at me again. I was terrified that he would be in denial and say that the doctors and myself don’t know anything and that there is nothing wrong with him. He would see the very physically capable son of ours and say, “Look at him! He can walk, talk, and do everything that any normal kid can do. He isn’t sick or dying! He is perfectly fine and there is nothing wrong with him! He just needs more discipline and you aren’t being strict enough with him! It’s your fault for the way he acts!” Every one of my fears about our marriage falling into the statistic of divorce with a special needs child came to me. Even though we both are very against the idea of divorce (obviously in the instance of abuse we believe safety comes before staying).

I was scared. I know I needed to tell him. I needed it not only for our marriage and the fact that he is the father of this child and deserves to know what is going on with his son, but I needed to tell him for me. I needed help with my stress and the weight of going through everything completely on my own for so long. Even though he is not an emotionally empathetic man, I needed my husband to share in this new life WITH me.

So, one night after I put the boys to bed, I asked him to pause his game because I needed to talk to him about something very important. I told him that it was regarding Killian and that I was really nervous to tell him. He got worried that something deadly was wrong and I immediately squashed that fear so he then got frustrated and told me to just spit it out because he needed to know if there was something going on with his son. I reminded him about all of the therapies and doctor’s appointments and evaluations and testings that I had mentioned to him that I have been taking Killian to and he said yes. I then let him know that I got the results back.

I took a deep breath and said, “Killian has been diagnosed with High Functioning Autism, ADHD, Generalized Anxiety disorder, just like my entire family and myself have, and Sensory Processing Disorder.” To which he just calmly replied with, “OK. Is that it?”

I was pretty taken aback. I mean, on one hand I’m like, Is that it?! That’s a long list dude!  And on the other hand I’m thinking Oh thank God! That went WAY better than I had anticipated.

I asked him if he believed us and he said yes and asked why he wouldn’t. I told him that he normally says doctors don’t know anything and make things up and he says, all shocked, “When have I ever said that?!”

“Umm..like EVERY time you go to the doctors.”

“Oh well that’s different. That’s for me,” he says. As if that makes all the difference in the world. *Rolls eyes*

I asked if he had any questions and he said that he didn’t. We did the tests and paperwork and this is what it says. He said he knows that Killian is a little different from other kids his age but he will never love him any less.

I started crying. I told him that I was so afraid to tell him and when I told him why, he said he has no memory of ever telling me those hateful things about it being all my fault or that something was wrong with me. He apologized for having ever said it and asked me to please forget that he ever did since he doesn’t even remember it. I explained to him why I am always so stressed and exhausted when he gets home from work is because my brain never shuts off. I am constantly thinking of things that I need to get done in the house, or appointments that I need to make, doctors I need to call, therapy schedules, school and how he was sent to the office twice this week for hitting kids and the teacher. I told him that I really needed his help carrying this responsibility. Even if that just means he take a little more initiative around the house and with the boys before they go to bed or let me be cranky and frazzled until they are in bed and I can just sit down and talk to him.

He then took it a giant step forward and apologized for adding to my stress by not being more self-reliant and always asking me to do everything for him (find his glasses, get his night-time meds, get him food/drink, etc.) when he is fully capable of doing simple tasks for himself instead of asking me to go and do things for him while I singlehandedly get the boys fed, food put away, get them in their jammies, teeth brushed, and into bed while he stays laying on the couch playing a video game.

That realization and apology was not at all expected but it is definitely VERY appreciated and welcomed.

My friends and family have been praying for me and for my husband’s mind to be open and accepting of this information. And to them, I again thank you.

Our journey has only just begun and I know that there will be a lot of trials and tribulations ahead. But for now, I am rejoicing in the answers we have and the acceptance that was made.

-The Lazy Mama

Fight No Flight

An hour after Killian got to school yesterday I received a text from his teacher that I needed to come pick him up from the office because he had punched a child in the face.

Mom guilt and embarrassment floods through me. I start thinking: Why does my son have to be so violent?  Things were going so well, why has everything gone to shit recently? Why can’t he just listen to me when I have told him repeatedly NOT to hit people and just use his words?!  

(Thankfully the other child was not injured and “brushed it off” from what the teacher told me.)

I go in and get Oliver out of bed since I had just laid him down for a nap so we can go pick up my little deviant child.

When I pick him up he begins crying because he does not want to go home, he wants to stay at school. As we walk to the car I ask him why he hit Z in the face and he said simply, “Because he took something from me.”

You see, Killian has a very strong fight instinct. If someone does something that he sees as a threat against him then his knee-jerk reaction is to get that threat away from him as quickly as possible. Normally that results in a shove, hit, or kick depending on how his body is positioned.

I can not even tell you how much breath I have wasted on what seems to be in one ear and out the other talking to him about how he needs to NOT hurt people with his body. If someone does something that you don’t like, you need to tell them to stop and if they don’t listen then find a grown up. Unfortunately, Oliver takes most of his hits since he is 1.5 years old and lives with him. Killian just doesn’t seem to get that violence is not an appropriate response.

Now, I am NOT justifying or saying that what he did was OK. But, looking at it from my 4 year old’s eyes, it makes sense that he punched the kid. I mean, I get pissed when people take things from me. However, my brain is not only much older that his, but it is hard wired differently than his.

Did you know that between 25% and 45% of kids with ADHD stuggle with physical aggression? And everyone knows that people with Autism can be physically aggressive. Do you know why?

Because when they are off in their own little world, doing their own little thing, and all of a sudden a new stimulation attacks them and brings them in to the real world, it is scary!! Imagine sitting on your bed, headphones on, closing your eyes, and dreaming of being on a nice warm beach somewhere. Let that sink in for a minute. It’s so relaxing to be in your own little haven. So peaceful. Not a care in the world.

Now imagine that some asshole just thew a pillow at your face!!

How do you react?

Me? I’m pissed as hell!! I just screamed out a string of curses and chucked the pillow back at their face, calling them all sorts of obscenities.

That’s pretty much what it is like for a 4 year old boy with a brain that is hardwired to tunnel vision onto everything he is doing. When that little boy took away Killian’s toy, to him, it wasn’t just a simple toy. It was the ONLY thing that was happening in his life. Nothing else around him was even existing until it was wretched from his hands. His fight response kicked in and he threw a fist.

Again, I am NOT condoning this behavior. Just trying to understand where he is coming from. Which brings me to my next issue, and I will have to do another post about this at a later date. Empathy.

How in the HELL do you teach a toddler empathy?! ESPECIALLY a neurodiverse one.

When he punches his brother I will turn it around and ask him how he would feel if brother were to punch him? I have him look at Oliver, ask him to define what brother is feeling, then TELL him what brother is feeling since he says he “doesn’t know,” and then I ask, “How would you feel if I were to punch you?” He then gets huffy and says something along the lines of him punching me back or catapulting me. I then ask him again how he would FEEL, and really enunciate the word ‘feel’ and he will tell me the same thing. He would do something to me.

He doesn’t understand feelings when it is about someone else. He knows how HE feels and that’s really the only thing that matters.

So, today when I dropped him off at school I asked him to please say sorry to Z for punching him instead of using his words. He just responds with, “I hope that Z isn’t at school today. He is a bad guy. He takes things from people.” In his side of the story, the other kid is the bad guy and he did nothing wrong.

Now, is it OK to take things from people? No. Is it OK to hit people? No. We all know this. Except for the kids who have a stronger sense of fight and no understanding of empathy.

I really do hope and pray that one day my words finally sink in and he won’t live half his life in time out for beating up on his brother. And I also REALLY hope that brother will stop following Killian into time out right after he was just punched for taking a car or block away from his big brother. I mean, seriously kid. It’s like you’re just asking to get punched at that point. Just leave your big brother alone for 4 minutes while he is in time out. You really don’t need to go sit on top of him.

Anywho, I digress. I guess really all I wanted to say is that even though my son did not respond correctly, he is not a bad kid. He really doesn’t seek out to just randomly hurt people for no reason. He just goes from 0 to 60 like *snap* that.

I will continue to do my best in teaching him how to appropriately respond to these types of situations, but PLEASE, I beg of you, please do not label him as a bad kid or a bully. He is such a sweat and kindhearted kid. He just needs more time than others in learning how to deal with the world and people around him.

-The Lazy Mama