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?!”

“ 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

Rage Monster

While I was pregnant with Oliver, I was hoping and planning for a VBAC with the water birth center (I specifically requested NOT to be on the care team of the midwife who had hurt me at the BWF conference, see previous post).  Though this time my eyes were open from Killian’s HBC. I told myself the entire time that it could end up in the OR again. My motto became, “Hope for the best, plan for the worst.” And I am glad that I kept that in the forefront of my mind.

Let me bunny trail for a minute. Anxiety runs extremely heavy on both sides of my family.  I have dealt with it for as long as I can remember but it was always a come-and-go sort of thing that I was able to manage on my own.

OK, now we are back.

I REALLY wanted a little girl.  We kept calling the baby in my tummy, “Baby Lilly,” who we were going to name after my grandma Lillian. Well, lo and behold, I am destined to be a boy mom.  I was so disappointed for about a week or 2 until I realized several things. 1, we were going to save a TON of money because I saved all of Killian’s old clothes and they were in brand new condition thanks to Spray-N-Wash and Borax. 2, Killian would have a best friend for life. And 3, NO TEENAGE GIRL HORMONES!!! (Plus it means I won’t be passing on my PCOS to anyone)

At the beginning of my 7th month in pregnancy, I made an appointment with DR. Johnson, the OBGYN who did the c-section for Killian, so that I would be on his schedule just in case. While I was there he did an ultrasound and guess what he found? Oliver was presenting breech just like Killian was. Of course. At least there was still lost of time for him to flip so I wasn’t super worried. I made an appointment for 2 weeks later and he was still breech.  I didn’t want to go through another version because they are painful so I left it in God’s hands.  I decided at that point to just switch over officially to his care full-time at that point because I had resolved in my head that this was going to end up in the OR again and was oddly at peace with that. Before leaving the office I scheduled the c-section for my due date and let my family know so that my parents and husband could get the time off work that they needed.

At 38 weeks I went back in and Oliver had flipped and was facing down! At that point everyone already had the time off so I figured if he came before the scheduled c-section then I would try for the VBAC there at the hospital and if not then we would just stay with the cesarean.

Our check-in time was at 5am and Killian was staying the night with my parents who would bring him to the hospital after his nap to meet his new baby brother. And here is when my anxiety starts to kick in. I couldn’t sleep a single second the entire night before. I kept having this fear that something was going to go wrong. I felt a sense of dread and unease. I would be fine one second and then couldn’t stop crying the next. I remember taking a shower with my husband right before we left for the hospital and I cried the entire time.

I kept having to close my eyes and take deep, slow breathes to calm myself down. During our short drive to the hospital, one of my favorite songs came on, Dirt On My Boots by Jon Pardi. It was a great reprieve from my building stress and anxiety. My husband and I sang/yelled and danced to the entire song and right as it was ending we pulled in to the parking lot.

I continued to have an uneasy feeling and would start crying again randomly throughout the entire check-in and pre-op process. Thankfully all of the nurses were sweethearts and told me it was totally normal and fine or blamed it on hormones. After about 2 hours, all of the vitals were taken care of, IV fluids started (and whatever else they did that I can’t remember), Dr. Johnson came in to check on me and let me know that his team was finishing setting up the OR and the anesthesiologist would come in and walk with my husband and I into the OR.

When he asked me if I was ready and excited to meet Oliver, I told him yes with a shaky voice and started crying again. I explained to him that my anxiety had gotten really bad and that I was having a really hard time this time around. I tried to make a joke about how you would think that my anxiety would have been bad before Killian’s c/s since it was so unplanned instead of having it now when I know what to expect. I asked if he would pray with me and he said of course, came over to put his hand on my knee, bowed his head, and prayed over me, Oliver, and the entire surgical team. I thanked him and he gave me a hug before leaving to go scrub in.

A few minutes later the anesthesiologist came in and she helped wrap me in a blanket and get my IV ready so that I wouldn’t get tangled up. The 3 of us walked the short distance into to OR and I climbed up onto the operating table. Because I have a fear of needles they were allowing my husband to come in at the same time as me instead of having him get in his scrubs while placing the spinal block.

I got really dizzy 3 times and each time would start throwing up the little bit of water that was still in my stomach while undergoing the procedure. Of course my dumbass husband decided that would make a great photo op…*insert evil glare* The anesthesiologist said that the dizzy spells were caused by my heart rate and oxygen levels dropping so they kept putting the oxygen mask on me.

Right as Dr. Johnson was about to pull Oliver out, he chuckled and said, “Hey Alyssa, guess what? He’s breech again.” I just rolled my eyes and sarcastically said, “Of course he is! Why wouldn’t he be?!” Evidently BOTH of my children are directionally challenged like their mama. We just can’t live in a world without GPS it would seem.

He was a chunky little guy with a full bladder who decided that the guy cleaning and weighing him needed to be peed on….5 times! HE weighed the same 8 lb 9 oz that his brother did and was half an inch longer at 21.5 in long. And of course they both have their daddy’s big dome so it was probably good they were both breech and c-sectioned or I would need a full on vaginoplasty or some shit.

Anywho, so while I’m getting closed and glued up, Zeb took Oliver to our room and was sporting the sexy skin-to-skin look with our newborn baby boy. When I was wheeled into the room on my bed, my body temperature was down to 94°F so they quickly threw heating pads and blankets all over me. I felt like I was literally dying from heat! I am a normally very warm person so this was seriously hell. I had Ollie on my chest but eventually Zeb took him back because he was getting overheated. I kept telling them that I was so hot and needed out of them but they would just tell me that my body temp was still to low and that I needed to stay under them until I was back at 98.6°F.

Everything after that went great. Killian came and met “his” baby and gave him his big brother present which was a super soft stuffed bunny (Killian has 2 bunnies that he loves and sleeps with every night so he picked out a bunny for Oliver all on his own) and then Oliver gave Killian his baby brother present which was a monster truck toy from the Dollar Tree that he thought was cool on our last trip there. My parents fell in love all over again, my little brother and SIL came to visit, and one of my best friends came to visit. Life was awesome.

Fast forward a few months.

I had been feeling like I was constantly angry. Every little thing Killian would do was setting me off and I felt like I was constantly yelling at him. I loathed the stupid Hot Wheels tracks and wanted to nut-punch my brother for giving it to him on his 2nd birthday because he would bring them out, dump the pieces all over the living room, and be upset because he would ask me to build the track which took forever, and then get upset about not being able to get the cars to flip, and I would have to clean it all up while he threw a fit. So really nothing that out of the norm with a 3yr old. But it would get me so angry and frustrated regardless. I hated the feeling like my relationship with my son was going to shit because I couldn’t seem to calm this feeling inside. It was that feeling like I had done something incredibly bad and had gotten caught. Like I had cheated on my husband and he found out. Or something else that gives you the horrible impending doom feeling.

One night I was scrolling through Facebook and read an article, I think it was by Scary Mommy but I’m not totally certain of that, about a mom who felt like she had this rage monster within her and she kept lashing out at her family. She went on to explain every single thing that I had been feeling, doing, and thinking. At the end of the article she explained that that was how her anxiety was manifesting. It was like all of a sudden this light bulb went off over my head and I knew that I needed to see my doctor and get help if I wanted to save my relationship with my son.

The next morning I called my doctor and was able to get in with his PA the following afternoon. She asked me if I wanted to take a prescription or do counseling. I explained to her that I would like to do counseling but I needed a quick fix in order to repair and reverse the damage I had done between Killian and myself. She agreed with me and set me up with the lowest dose of Zoloft aka Sertraline since it is safest to take while breastfeeding. Thankfully, I didn’t need to try anything else or adjust the dosage like she had warned me might be the case. I did 3 counseling sessions, once every other week, and things started getting so much better!

Finally, I was feeling back to normal. I could play with my son and not be irrationally angry with him just because he asked me to get on the floor and play with him. I was enjoying being a mom again. I was able to come back as needed to speak with a counselor which I have done multiple times since just to touch base and get a new perspective or advice on how to manage life with a child of special needs and a husband who is not on the same page (that’s another post for another day though). It was like I could finally breath again.

Back in October I emailed my doctor and told him that I was noticing a change and that I was becoming more anxious and agitated lately. I felt like I was in a constant state of running super late for something important. He said to go up to the next dosage which was double what I was taking. After I did that, within a week things got better again.

I’m afraid to think about what I would have become had I never took the time to read that article and realize that my anxiety was manifesting itself in the form of anger and rage. I am so thankful to the mom who took the time to tell her story that led to me getting professional help.

Mental health is so important to keep track of and unfortunately is shamed in our culture. I know that people are speaking up and advocating on behalf of seeking help and I am definitely a supporter. I honestly feel that everyone should be in counseling or therapy. I mean, who DOESN’T have something stressful going on in life or need an unbiased person to talk to about life?

If you aren’t already in counseling, I implore you to do so. If you think that you need something that will work faster, then talk to your doctor about starting an antipsychotic and couple it with therapy.  I guarantee you will be happier and live a healthier life.

-The Lazy Mama