Welcome to Ryan 101

This is my first, spur of the moment blog post about my son Ryan. I figured it would be easier to blog about my journey and save it in cyberspace than to do it on paper and possibly lose or ruin it. So here we are. My boy Ryan is 3 and a half years old and was recently diagnosed with Sensory Processing Disorder. My goal with this blog is to share/track his doctor visits and progress through this diagnosis. Besides that, it's easier to send people to read the blog for an update than to rehearse the doctors visit over and over and attempt to remember all the facts. This will serve as a great tool for me when talking to his doctors too. So let's see where the journey takes us... 


For starter, and without typing all the history about Ryan in one post, he has always been a "strong willed" child. He never liked to cuddle or be soothed and he has always preferred to play alone and when with other kids he tends to play rough.. None of this really raises eyebrows since some kids do this and nothing is wrong with their nervous system. On top of that, his brother is only 18 months older than him so his tendency to "act out" was always written off as an attempt to get attention anyway. (Side note, I did not plan on having two kids so close, but that's another blog entry...). I, as his mother, have always felt in my heart that it was more than him just being a typical boy. His continuous head banging, biting, scratching, etc. was worrisome and I eventually took him to his pediatrician just so she would notate in his profile that he causes harm to HIMSELF so CPS wouldn't get involved. 


Recently a good friend's son was diagnosed with the same disorder. I don't know how rare or how frequently kids are diagnosed with this type of disorder, but it was random to say the least. I can't help but feel that God works in mysterious ways and that I am grateful that I have someone close to me that understands. However, for whatever reason, unknown to me, her son had no problem getting help/referrals. Whereas my pediatricians wrote me off like some dumb mom... Since she was able to get therapy for her son (and I'm grateful she did because with an 18 month old she will need the help and I only wish I had had the help/resources) she was able to tell me what they diagnosed her son with and she advised I speak more firmly (to say the least) to my pediatrician and insist he get tested. So I did... and it worked... 


After researching the disorder and finding a website that compiled a list of symptoms (most of which Ryan displays!), I emailed the pediatrician. At first I just requested he be tested. She requested I explain what it is that I think he has, and that the behavior is most likely a phase... I thereafter used the symptom checklist and almost listed them directly from the website. I just pretty much begged her to help me put my mind at ease. She, having her own 3 year old, hesitantly gave me the referral to meet with a behavior specialist, insisting that she even has a hard time nailing down a diagnosis like this since she sees so many varying degrees of rambunctiousness when she volunteers in her son's school. Don't get me wrong, she's a great pediatrician and I'm sure she gets plenty of crazy requests and mom's who insist that their kids are sick when they're not... but I pay for friggin health insurance so I should be able to get what I think I need. At least when it's as simple as meeting with another doctor. You would think I was asking for the moon! 


Anyways, so I got the referral to meet with a behavior specialist. After filling out the 10 million pages of paperwork that the doctor barely glanced at, we we're finally talking to someone that could get us help. She asked my husband and I a bunch of questions and I wasn't going to leave without a referral to come back or meet with someone who could "hands on" work with my kid! Mind you, this appointment was only a parent/doctor conversation. It was nothing where she even interacted with Ryan much. Almost like an interview to see a therapist... It was weird but she was great, the nurse was great and ironically enough, she could tell based solely on my responses to her questions that Ryan needed to see a therapist.. She didn't need to feel the "goose egg" welt on Ryan's skull from repeated trauma (from him banging his head on the floor). She didn't have to experience a melt down... she simply knew that he, as she put on his profile, "developmentally delayed with speech delays." She told us someone would be calling to schedule a occupational therapist appointment, a speech therapist appointment and a hearing test. It was a successful doctors appointment. Oh and did I forget to mention this appointment occurred on Halloween day... just a random fact...And unrelated to this whole diagnosis thing, Ryan was born on Easter... The kid must have a thing for holidays... Moving on... 


Oh and before I forget, the behavior specialist also gave us a letter to take to the school district. We had no idea why because we knew the school district we live in doesn't have public preschools. Well we were in for a surprise. When I went to the enrollment center I quickly went over why and how I ended up there. They directed me to special services (a building less than a block away). There I was told about a special preschool for kids with special learning needs.. They obviously have autistic kids, other learning delays, and more. There's 80 friggin kids in the program! I'm not alone! ;) 


I was excited yet again! (Mostly because the impending school years are a topic I'm pretty much, or was, loosing sleep over! His behavior alone is borderline only tolerable by his parents!). The secretary gave me some paperwork to fill out and a list of forms to be brought back in. The preschool is for 3-5 year olds and the kids get assessed and assigned a therapist/counselor and a IEP (individual learning plan) is set up for them.  (My mom and sister are teachers so I had heard about IEP's but it was never in this sense. It was usually for "bad" kids or those whose first language isn't English). Regardless, at this point I don't care what they call it or how they label him, I just need the help! 


I went back to the special services office that same day (still Halloween day) and submitted his enrollment paperwork. I don't have much info on the program, but I do know he will be in a class with kids that are dealing with the same things he is. Knowing he will be around others who know how to handle the disorder gives me peace of mind. I've made an appointment to have him assessed since this initial paperwork submission and that will happen early December. Until then, we're just waiting. 


Shortly after meeting with the behavior specialist the speech department called me and scheduled his appointment for therapy and the hearing test. We're still waiting for those dates to approach but we have met with the occupational therapist. She's actually the one to specifically say Ryan has Sensory Processing Disorder. In short Ryan's brain has a hard time interpreting input from the 5 senses.This first appointment was really just another assessment and so the therapist did a lot of watching him and I did a lot of talking. Not that she was asking questions, thought I asked a lot, but I have this innate response to explain all of Ryan's "quarks" because I'm so used to other people judging him or writing him off as a difficult kid, a bully, mean, too aggressive, blah blah... The therapist wasn't shocked by it and she seemed to enjoy all the history I willingly gave about Ryan's 3 years so far and how we usually deal with him. 


In short, the appointment was awesome. The facility is awesome. The therapist is amazing and the lady at the front desk is wonderful! I'm sure that soon enough I will have them on speed dial and know them on a first name basis. It's so nice to see another adult besides Ermes and I interact with Ryan purposefully. She watched him play and even got to experience his meltdowns. She reassured me that it's normal and made me feel like it's totally manageable. She described Ryan's brain as a freeway with the exits backed up. The brain has to find another way to get signals to where they're going and sometimes they don't make it at all. Kids like Ryan hate light touch which explains his lack of desire to snuggle, be held or comforted even when he gets hurt and his desire to play alone. Another thing the OT addressed was his lack of eye contact and how he rarely responds to his name being called. Some assume this is a sign for autism (and it can be), but the OT believes Ryan doesn't have autism. She explained that she thinks he as learned that if he avoids eye contact he avoids the light touch that accompanies hugs, kisses, etc. This was a relief because I swear the kid is either deaf or rude. Now I guess I understand a little better. We have yet to really address that he lacks the common sense danger issues in life, like running into traffic. Ryan doesn't seem to really differentiate between a "Come here Ryan, mommy want's a hug" and "RYAN STOP YOU'RE RUNNING INTO THE STREET..." This has been the case since he could walk too!!! I guess I will have to bring that up in our next appointment. 


For treatment, we are brushing his skin with a brush to sensitize the nervous system and massaging his joints. This has to happen at least every two hours if not every hour. It doesn't require much effort or time so it's an easy first step.She also recommended a book and a website to check out. I will order the book today and I would like to have it read in a couple days. We shall see. As of right now therapy will be for about 6 months meeting every two weeks and I am already eager for the next appointment. 


Well, I think that's all for now. I didn't intend to write a novel but it looks like that's what it turned into. Hopefully I will be able to help some other poor moms out there who can't understand why their kid acts the way they do... turns out it's more than just behavior! 


Oh and here's a great website I've been checking out.