by Lyz Bryant
In light of Autism Awareness month and our recent run in with the skepticism by the current school over our son’s diagnosis, I feel it’s finally time that I share our story with the community here. If our story can help just one other family going through what we WENT through to know that they aren’t alone, when we thought we were, then everything we went through was worth it. I’m sure there are things I have left out, or skipped and if this is all over the place, I apologize. It’s so much and my brain is crazy.
On June 26, 2005 we became parents to an amazing little boy named Randall Alan Bryant Jr., aka RJ. He was an amazing infant. He hit every mile stone on time or early with the earliest mile stone being walking at only 7 months! He has always had this light in his eyes.
He spoke late due to a tongue tie and lip tie but was speaking in 3 word sentences by 13 months, about 3 months after the revision of the ties. At 18 months he had the vocab of a 26 month old. He was such a curious little thing. At about 12 months though, we started to joke about him hitting the terrible 2’s early, but we were scared. Our funny, loving, toddler would throw violent tantrums lasting upwards of an hour, where I would have to lay on the ground with him in a hug hold to keep from harming himself. He once slammed his head against the wall, purposefully, so hard that he had a bruised goose egg on his forehead the size of at least a golf ball, and yes, at only a year old. He would hit, kick, bite himself, and slam his head on the ground, walls, anything. We asked for help but were told, “Oh he’s so smart and friendly. There is nothing to worry about. He will grow out of it.” Right after he turned 2 we found out we were expecting our second child.
When I was about 7 months pregnant we had taken RJ in to meet his new pediatrician because we had just PCS’d to Georgia. The pediatrician took one look at him and said, “He’s rough” to which my husband and I agreed. He looked at me and asked if we had thought about medicating him. I said “No, he’s too young for that”. The pediatrician went on to tell us about this medication, Risperdal, for kids with autism sometimes and it works great. He said we should try it because with the new baby, his behavior at the time would be detrimental to his (baby’s) well-being. So we agreed because we didn’t want to take the chance of our newborn being in danger. We saw absolutely no change in him at all a couple months down the road and decided that there was no reason to put that into our 2 year old if it did nothing so we stopped it.
When RJ was around 3, my husband had been deployed for a few months and there was a big falling out with a group of our friends because RJ was too rough. Another friend shared with me that she had just had her son seen by a psychiatrist through Tricare, no doctor referral needed. At that time I needed a break from the constant craziness of life of a deployed spouse with an infant and a preschooler who was too smart for his own good and on the go 24/7.
We got in with a psychologist who confirmed ADHD and said, “Here are med choices that will help and you should see our therapist in office for behavior modification.” I decided to talk it over with my husband and we went back a few weeks later and started him on Adderall. It worked… until it didn’t. And that started the never ending trial and error of medications. By the time RJ was 5 years old he had been on every single ADHD stimulant and non-stimulant that you could name at the time. We had also dove into anti-psychotics because his mood swings and meltdowns were getting worse. We were sent for a psychological profile that came back with ADHD, Anxiety, and Bipolar Disorder. It took me a while to wrap my head around that one.
In 2011 we moved to Cape Cod, MA with RJ on a cocktail of meds. When we arrived we couldn’t find a doctor to prescribe any of his medications or who would even see him to make adjustments. He did not handle the move well at all and ended up with his first psychiatric hospitalization at just 6 years old during Thanksgiving. He came home once again over-medicated and gained 25 lbs in a month. By this time we had lived there for 3 months and still another 3 weeks away from seeing a psychiatrist. We ended up having to receive a secondary insurance through the state to get him any services because Tricare covered nothing on Cape Cod.
Over the next 2 years we had been seen by doctors at Tufts medical center in Boston, and he had a full evaluation done by the May Institute for Autism. At Tufts they came back with a laundry list of diagnosis including RAD, ADHD, BPD, PDD, ASD and more I can’t remember at the moment. But the May Institute insisted there was no way he had any form whatsoever of ASD because we couldn’t name something he was hyperfocused on, the fact that he tried to make friends and that his speech was advanced. We had a few calls to the Crisis Management team where they would come to our home and try to calm him down without hospitalization and it worked for the most part.
In 2013 he just went downhill fast after an amazing summer visiting family. There was an incident with another family on our street that involved the police and then the Coast Guard command trying to kick us off base. A week after the incident, RJ went into an explosive melt down and threatened to hit his father over the head with a hammer after completely destroying the house which ended up with his second hospitalization. Two days later, we found out baby number 3 was on the way.
During this hospitalization he seemed to do well. He was home 10 days later and back to school for his 3rd grade year. The school had always been an issue in Massachusetts. RJ started kindergarten in Georgia and at that time his teachers raved about how smart he was. He scored the highest in the grade on the standardized tests they took at the beginning of the year and he was permitted early testing for the gifted program, and accepted. However, when we moved to Massachusetts, they were a year behind where he had been in Georgia and they had no gifted program. He fell behind quickly due to boredom and no matter how much I tried to work with them they said unless he showed he could do the work then there was nothing they would do. I was at the school numerous times because of bullying issues, and teacher/ classwork issues and trying to get RJ on an IEP, to which they changed their minds.
Around Christmas time 2013 we found out that we were receiving a compassionate reassignment to Colorado Springs, news we had waited for since moving to Cape Cod. We received the official orders on my birthday just a couple weeks later. The end of January brought a tough time for RJ and he was hospitalized again just 3 weeks before TMO would show up and start packing our house for our move. He came home just in time to finish one more week of school and then we were moving. In the hospital this time he was put on Lithium, Abilify, and Chlonodine, the least amount of meds he had been on at one time in a long time. The move went relatively smoothly and RJ did okay for about a month, and then he went out of control again. Our new psychiatrist here left us in the care of his nurse. She tried to do an entire medication overhaul even though I insisted that his Lithium levels had to be low. No matter what, we could never keep his levels at a therapeutic dose. The cocktail that she put him on sent him spiraling within a few hours, and I stopped it immediately, being 8 months pregnant, because I couldn’t handle that.
About 2 months after we arrived in Colorado Springs, RJ ended up in the hospital again. This time he was at Cedar Springs. At that point they changed his medication again and put him on Depakote, and left everything else. We also decided at that point to go for RTC because he needed more than we could do at the time. We felt he needed a longer stay. I spent the last few weeks of my pregnancy going to visit him 4 times a week plus weekly family therapy. There were SO many issues with his entire RTC stay. The therapists were great but he only spent a very small portion of his day with them. The techs on the other hand… they would sit and WATCH the kids break out in fights until they had to put their hands on them. We would sit during visiting and they seemed to sometimes almost encourage the fights. One of the techs sat and watched as RJ and some other children got in a fight to where it escalated so far as to RJ biting another patient hard enough to break the skin and require HIV testing. This happened twice and both times “no one saw what happened”. We had also had medications added and changed. One day I got a call asking if they could give PRN (as needed) and I agreed. Then, I got a call back a few minutes later apologizing to me that they gave him the wrong medication, then again another call saying “Oh the doctor was going to add that one on anyways”. I was stunned and had no clue what to do. RJ also broke out in a rash all over his body from the beginning of his stay. He was allergic to the soap they used to wash the clothes so we were required to provide soap for his laundry. They washed clothes twice a week and the bottle we brought was for 64 loads. About 3 weeks after being in RTC they told us he was out of detergent. Not low, out. We ended up finding out that the techs had been using his detergent for EVERYONE else on the ward. We told them that they needed to replace it ASAP. We were told they would. A week later it still hadn’t been done. We found that out because I received a phone call to authorize Benadryl for RJ because he had broken out, not just in a rash, but in hives from head to toe. At this point we were beyond fed up and brought him home. He came home on Depakote, Haldol, Cclonidine, Seroquel, Abilify and Melatonin.
About 2 months later, after watching him drool all over himself uncontrollably, shake so bad he couldn’t button his own pants, and watch him gain weight so quickly that a boys size 14 was too small around the waist for him, we decided to try some vitamins that a friend of mine had tried with her son. We figured if they didn’t work, we were no worse off than we had been.
The first few months were rough on the vitamins. The way you know they are working is when the behaviors get worse, then it’s time to taper down off meds. Then you have another month or two after all the meds have stopped for all the chemicals to make their way out of the body. It can happen sooner depending on how much protein intake there is, but RJ quit eating for a while. We opted for online public school through Connections Academy until he was stable enough to go to school. About a month into everything we realized that homeschooling wasn’t working as RJ and I do not work well together as teacher and student. We talked to our local school about him coming back. They automatically set up a meeting to “discuss the best possible way to help RJ when he returns,” with the school psychologist from another school that offered a class of only five students, more supervision and an IEP which I had been fighting for years to get him.
Once the meds were completely out of his system we were seeing more “classic” Autism signs. It was like the medications hid EVERYTHING that would make the doctors say “YES it’s Autism!!!!” Dr. Drozd has been absolutely amazing for us. He got RJ the sleep study I had also been wanting for years. We found out this January that RJ has severe pediatric sleep apnea and possibly narcolepsy. He had his tonsils and adenoids removed, but we are still waiting on another sleep study and other testing on the narcolepsy side. He still sleeps a lot during the day, which gets him in trouble at school. He still is not sleeping through the night.
We have had countless issues with bullying and his school district letting it happen. RJ was suspended once from his current school, for choking another student on the playground and yelling some pretty nasty words to this child. The other child admitted to verbally attacking RJ and pulling on him. Nothing was done to the other student. On his IEP he has transportation written in. We pulled him off the bus for a while because one day, the bus pulled up and I could already see it was bad. I went out to get him and was met with the bus driver yelling at me, all the kids going ballistic, and RJ cursing up a storm (something he picked up from his stint in RTC). Later that night I had gotten on a local Facebook group to vent and low and behold, the para from his bus jumps on and messages me. She had the gall to call RJ a “problem child” and then admitted that what had happened was that another student was making fun of RJ for his ears being pierced, calling him a girl, and making fun of his glasses. She REFUSED to assist him and indeed, she and the driver joined in on the bullying coaxing the other students by saying that is earrings were “SOOOO PRETTY”. NOTHING was done to neither the driver nor the para. She REFUSED to apologize to me or my child. She still is a para on a bus but they put her on another route per her request.
We have been through hell and back with him. I know it’s not over yet, it probably will never be.
But he is getting better.
We have ABA now, and OT, and a dx that fits him better than any of those others ever did. Life as an Autism parent, even a high functioning one, will NEVER be easy.
Our middle son takes the brunt of it a lot and I am so proud of the person my middle son is.
There are days where I sit and cry. I just don’t know what to do when RJ is screaming and yelling at us and calling us horrid names and saying he hates us. Those are the days I hate what we go through. The good days can be few and far between, but we have also learned to cherish those days.
I think as a parent of a child with Autism, we all know that feeling. I think we are more fortunate because we don’t take the good for granted. Again, if our story can help encourage just one other family going through what we WENT through to know that they aren’t alone, then everything we went through was worth it. Just to help one other family feel relieved that it’s not them, it’s not their parenting, they didn’t fail, that things can be better. I’m sure I have left things out because things come up and I’m like “OH!!! I have to add that!!!” so, if you have any questions or want to talk more, I’m on Facebook and am always up for sharing more of our story.