Our road to discovering Rex's Diagnosis- hopefully our hard won journey will pave the way for some of you out there just starting your's

 

I ended up leaving my job (the first time) back in 2009 to stay home and care for our family. We ran the numbers, salaries vs. expenses and I made the least of the two of us and I could cut down a lot of our food expenses by actually cooking meals rather than getting drive through since we were always so busy, so it made sense.

Rex really needed a lot more direct care at this point. Rose and Char were also not having the best of times with school and child care so they all really benefited from having a parent home full time. I always thought there might be something different about Rex. Everyone told me I was wrong. Char was very advanced and Rex a bit behind. So, everyone told me not to compare them because the gap only seemed larger because of this. I just knew there was something off with my baby though. With mother’s intuition strongly raging Bruce and I agreed to start some researching.

He had no one his age to interact with, being much younger than his brother and sister. So even though we did not need him in daycare when I was staying home with them, Bruce and I decided we would put him in a daycare facility to interact with some peers and learn how to be part of a group. I had disclosed our reasons for using the childcare for only two hours twice a week, and the facility manager agreed to help. However, saying is less difficult than doing, and they ended up just dividing him from the other children with one carer watching him and the other in the room looking after all the other children. (The two carers were visibly angry when they found out that I went to the grocery store while they had him and not doing something “more important, like work”. It really burned my biscuits that doing some family care tasks were not considered work by them. And I was paying them full price, so they really had no reason to complain anyway.) Rex had also been kicked out of a preschool, a MOPS group, and after the first two had failed, the daycare facility. All because they had no idea how to take care of him. It was after this, another difficult ejection from a children’s facility, that we began to seek other help.

Disappointment in our hearts and starting to believe he would never be able to go to school or get the peer experience he so desperately needed, we sought the help of the school psychologist where Rose and Char went. We had already met her to seek some accommodations for Char in class, so we thought she might be a valuable resource to at least point us in the right direction. Happily, as it turns out, we reached the right person for the task, as she was exactly what we needed. She set up an observation of him with a few different people and then a meeting with Bruce and me. It was pretty quick and only took a few weeks. It was this group that first told us that he had at the very least, educational autism. That allowed him to join a special needs class for pre-elementary children. He finally had a group of kids and teachers who understood. This led us to seek some specialists and seeing how we could also help him at home more.

Several doctor’s visits later he ended up with eleven different diagnoses. It sounds like a lot. However, every parent out there should know it was a good thing. For those who may just be embarking on this journey, I will tell you why. For each diagnosis there is a therapy. The more itemized it is, the more individualized therapy there is available. These were Rex’s and what we utilized to help him with them:

Sleep initiation disorder/He couldn't fall asleep on his own- there is melatonin. A small dose, but just enough to supplement the melatonin his body was not already making.

Sleep maintenance disorder/Once we finally got him down, he couldn't stay sleep for more than an hour or two at most- there is different medications that help them to stay asleep. We only had to go through two to find one that worked for him.

 Expressive language disorder- they have a challenging time verbally expressing themselves, for this there was speech therapy.

Receptive language disorder- this is where they cannot understand what you are saying to them despite it being their native language because the words get all jumbled up in their heads, more speech therapy but with more pictures to represent things.

Restless limb syndrome- ferratin deficiency also contributing to him not being able to sleep, so he took a ferratin vitamin.

    ---- I should mention, before we got the sleeping disorders under control it was usual for Rex, at only three years old, to only get about four hours of sleep a night. No naps. It was not conducive for his growing, or for his mental abilities. I know how cranky normal toddlers are who miss their nap. Now we multiply that in a child who just cannot sleep and does not understand the world around them enough to know why. After the sleeping disorders were addressed we were able to start work on everything else a lot better. ----

Severe multiple Sensory processing disorder- this one was Rex’s main issue as a small child. With this there was a lot of problems trying to sort out where the input was coming from in his senses. Everything was mixed up, like dyslexia for your five senses. We treated this with a lot of occupational therapy.

Regulatory disorder- being able to control his body, volume of voice, and limbs, more occupational therapy. Honestly, we also needed time. He seemed to get better with this the older he got. Not that the therapy was not helpful, but the two coincided very well.

ADHD- everyone knows this one. We found a low dose of medication to help treat him, as well as a lot of physical exercise.

Low muscle tone- for some reason Rex’s muscles were not developing like other children his age. He needed to work harder to do everything. Physical therapy helped a lot, but even at 16 we can still see some traces of it. He is a pretty trim person, but it takes him longer to build any endurance or strength than the rest of his peers. Football was exceedingly difficult for him and so the coaches almost never let him play. Yes, he quit after only one season. He loves tennis and his coach is pretty amazing. He made Varsity his sophomore year, something I never thought I would see when he was five years old.

Extensive food aversion disorder- lots of food tastes and textures he could not eat, and not just being a fussy eater, he could not put certain tastes or textures in his mouth. He would rather starve himself than eat something ‘icky’. We went to a nutritionist who specialized in food averse therapies and found some ways to slowly broaden his horizons and acceptance of other food tastes and textures. He has grown so much that he will eat at least one bite of anything I give him. I know one brussel sprout will not have a big effect overall, but each time I can get him to eat one, it improves his likeliness of being able to eat the next one.

Autism- Yes, the hard one. Occupational therapy, lots of accommodations in everyday life, and the best people who care about him to help him along. We had to switch schools in the middle of his kindergarten year because we thought that he was in the best school possible in our area, but we were very wrong. They were not set up to help educationally and behaviorally someone like my Rex. Most of the time they let him sleep all day in the special needs room so that when he came home he was cranky, hungry and would not sleep at night. We moved him to a school where they had an entire wing set up for helping students like him to succeed. He was able to get an educational aid person to stick with him all day, every day and help him through his classes. He got educational therapy with the school, and the team that took over his education was simply amazing. I could not sing their praises enough if I tried. At 16 and a sophomore in high school, he is in mostly regular classes, gets surprisingly good grades, and the few classes he does have for the neurodivergent, teach the same material, just slower and in a way that these students understand better. It is more individualized attention, so next year they might be able to be in the normal class with only a few accommodations.

These are things that I never would have thought possible when he was young and first getting diagnosed. Those days were hard. I am not going to sugar coat it. He did not sleep more than four hours at a time. Which meant we did not get much sleep either. He could not speak about his needs, things would bother him, but we had no idea why. You could hug him, and he would scream in pain, and other times he would want you to squeeze so tight and feel like you were not touching him at all.

This is in no way an all inclusive list of diagnosis, or symptoms. Or even what we dealt with several years ago. It is, however, a taste of some things we dealt with and how we overcame them.

I would like to mention this: Rex was about two and a half to three years old when we started this journey with him. Since then, due to what we learned with him, we have since researched, studied, and diagnosed everyone else in our family if they had similar issues. I am not trying to say that every single person has them, or we had to get them diagnosed to be part of something. Rex’s were so severe that we were able to get them noticed and go down the right path right away. Everyone else was good at masking, even at an early age. We had no idea what anxiety or overstimulation looked like in children. Back then you were only told stories of the mentally unstable people in homes, or the ones who lost their temper in public places. Once we saw the walls come down we started using the same techniques we learned with Rex and translated them into our parenting style overall, all three kids flourished and were better equipped to face the world. A world that was certainly not set up for them.