Tuesday, November 29, 2011

A quick awesome post...

I forgot to mention in my previous post how Dylan, Ryan and I walked to school today. We were in a rush to get there but Ryan and I decided to take our time coming home. Some of you may have already seen these pictures on Facebook, but they are too cute not to post in the blog (that Ryan may one day look back at... maybe).
He stopped at this tree along our walk home and we were there for at least 20 minutes. He loved all the leaves and I loved that the people who lived there didn't come out and shout at us to get off their property because Ryan was too cute!
He proudly showed me every stick, leaf, etc. while we were there. It was awesome. I just kept playing over in my head the various things the OT said today about how differently he processes things and how he experiences life differently. On any other day I would have rushed him home and gone to the gym or whatever. Today I just stopped my brain from rushing me from this moment.
He was so cute throwing the leaves all around over and over and over... I loved it. Only when he was done did I usher him to start walking again. It was a beautiful mommy and Ryan moment. Gave me a breath of relief just watching him. I felt better. :)

Then later that day, after we got brother from school and had snack, Ryan got up from snack and starting acting rowdy. The OT today was telling me I need to watch Ryan for signs for developing his schedule. I saw his sudden switch as a sign and I set up the living room as a obstacle course. Pop up tent, pop up tunnel, stacked the couch cushions and we rough housed. Ryan, and Dylan for that matter, played rough for 45 minutes nonstop! I even played fun, playful kids music. When Ryan was done he just picked up a plane and started playing by himself. I could tell he was over it. I cleaned up. Dylan started homework. I changed the CD to a Pooh story on CD and this was what Ryan did. ... Sat down and spaced out.
Then he did this for the next 20 minutes...
He didn't sleep.. just laid there and relaxed. Then he came to the table and joined Dylan for some activities. It was awesome.

Second OT Appointment

I'm sitting here doing some research while Dylan is in school and while Ryan takes a nap. My mind is going a million miles a minute because there's one million things I need to do in this brief time of solitude, but research is the heaviest weight I am carrying right now... so here we are. Before I start into the scientific stuff, I wanted to say thank you to everyone who gave me words of encouragement yesterday. Guess I just hit one of life's speed bumps. I have since smacked myself out of my stupid pity party and am back on track. Focused to do whatever it takes to be a strong mommy for Ryan and Dylan. It really just comes down to finding life's balance. But without your love and support yesterday would have been so much worse. By the time daddy came home from work I was all better and ready for dinner... and bed of course. But that had to wait since Ryan decided to take his sweet time falling asleep. It was nice cuddling with him and just ending the day relaxing. I love Ryan for who he is and I refuse to look at him as if something is wrong with him. He just needs work in certain areas.. we all do. So, for those of you who reached out to me, thank you. I needed it and am glad you made my day better without casting judgment. This is why I have chosen to share this part of our lives with you. :) Now, down to business. 

I'm researching what SPD (sensory processing disorder) really means and how it relates to Ryan individually. I joined an online community last night and the parents on there (as well as a good friend of mine) suggested I speak to the OT about what forms of SPD Ryan has... A website I found easily stated those with SPD display sensory defensiveness and "sensory defensiveness is the over-responsiveness of the protective responses of the nervous system."

Today the OT gave me some handouts that better explain some of the different forms of SPD and how it can affect the tactile system. I'm not sure because it seems like Ryan has both a hypersensitive (decreased sensitivity to touch) and hyposensitive (tactile defensiveness) tactile system. Ryan seems more tactile defensive though. The OT today did say that she thinks he has a hyposensitive vestibular system and hypersensitive proprioceptive  system too. When we're at therapy Ryan is constantly on the move and is virtually fearless. He wants to hang from the ceiling and bounce off the trampoline. It's incredible and he loves it! I wish we had a room just for him to be rambunctious in! I'll be continuing the research about it too. 

For the varying degrees of SPD that Ryan has, the OT recommended continuing the Wilbarger Brushing (specific pattern of stimulation delivered using a special type of brush and gentle joint compressions) she prescribed at our first visit, a weighted vest, and various physical activities. She also suggested when we go places to take a pop up tent so Ryan always has a safe place to basically avoid people. She mentioned a weighted blanket too to help him sleep. She also suggested I follow a typical preschool schedule (snack time, nap time, etc). She didn't specify how the schedule needed to be displayed but she did say that therapeutic play should be part of the schedule but to try and fit it into everyday activities (like rolling on the floor to the dinner table, etc). Basically, the stuff boys usually do (rough house, jump off the couch, etc.) is therapeutic for Ryan and gives him a sense of release from his efforts to try and avoid what he doesn't like (light touch for example).  I'm still trying to understand all this too... We wanna get Ryan a Jumpolene too.. that will be fun.. AND therapeutic! 

I am also looking into the Wilbarger Brushing Protocol,  now known as The Wilbarger Deep Pressure and Proprioceptive Technique (DPPT) which is what the pediatric OT prescribed at our first appointment about two weeks ago. I mentioned it in my first blog entry but I am still confused as to the purpose.  I was interested to find that the article states, "emerging evidence and expert opinion indicate that a deep-pressure proprioceptive protocol may be useful in helping children improve their ability to process sensory information effectively... and "It is recommended that using the protocol prior to stressful situations or activities (i.e., dentist, haircut, starting school, etc.) be considered to help the child tolerate participation in these stressful activities." 

"Based on the theory of Sensory Integration, the DPPT uses a prescriptive method of providing stimulation to help the mind-brain-body self-organize. " And the benefits include: 
  • "An improved ability to transition between various daily activities
  • An improvement in the ability to pay attention
  • A decreased fear and discomfort of being touched (tactile defensiveness)
  • An increase in the ability of the central nervous system to use information from the peripheral nervous system more effectively, resulting in enhanced movement coordination, functional communication, sensory modulation, and hence, self-regulation."
So the next time someone asks why we're doing it I can tell them why... kind of. ;) 

I quickly put together a schedule for Ryan... what do you think? Let's see how it goes for a couple of days... I'm already thinking of accommodation that need to be made on Tuesday, but other days of the week should be ok... I think... 
Tentitive schedule is as follows:
8:30am Breakfast/ free play with movie
9:30am Take Dylan to school
10:30am Ryan therapy play
11:30am Speech activity
12 Lunch
12:30pm Read/Nap
1:45pm Pick Up Dylay
2:15pm Snack
2:30pm Ryan speech activity/Dylan homework
4:30pm Therapy play
5pm Movie
6pm Dinner
7pm Bath 
7:30pm Therapy Play with Daddy
8pm Read/Bed Ryan
8:30/9 Read/Bed Dylan

That will have to do for now. I will see what else I can find. I am adding some more links to the blog to help remember where to go for info and to help others have a resource guide. Also, I called and scheduled a follow up appointment with the speech therapist to develop a home plan for Ryan. 

Monday, November 28, 2011

Hearing Test and First Speech Therapy Appointment

Well let's start out with the hearing test. Not much came from it. I figured Ryan could hear so I wasn't too worried about it. He didn't cooperate in the age appropriate test so they used the infant test on him (where the a toy makes sound at either end of the room and they turn their head to acknowledged what ear they heard the sound in). He also sat through the test where they bounce sound off his ear drum to confirm both ears we're working/responding to sound. He fussed most of the appointment. I thought it wasn't a big deal since he at least completed the infant test. Unfortunately I do have to go back for a second go at the age appropriate test because they can't confirm he is hearing completely out of both ears until he does... Kind of a hassle but not the end of the world.

Today was the first speech therapy appointment. It ended up being more of a consultation and she just assessed where he is at on the spectrum of standards. The test of early language development was administered and he scored pretty low. His receptive language quotient was 70 which is the age equivalent of 1 year 10 months, and he is in the 2nd percentile. For his expressive language he scored a quotient of 75 with the same age equivalency of 1 year 10 month old and he is in the 5 percentile. Overall he scored a spoken language quotient of 67. The average is 90-110 and he fell into the Poor/very poor category. Not good. The therapist took some further notes after some of the testing and she wrote the following:

Receptive Language: "Ryan was able to identify objects, pictures of objects, and basic body parts. Ryan was able to give one block on request with repetition of request. He was not able to demonstrate an activity ("show me how you brush your teeth" -he instead just showed his teeth) or accurately identify pictures depicting the location words of "in" and "on". He only followed one part of a two-step direction.

Expressive Language: Ryan was able to name pictures of familiar objects. He was heard to use up to 3 word sentences, however his mother reported that he can use up to 5 word sentences. Examples of sentences heard today include "There, it's gone", "No see it", "Is this airplane?", "What's that?". Ryan still mixes jargon with true words.

Summary: Ryan presents with poor receptive language and poor expressive language skills. His speech skills are appropriate given his expressive language age level.

That was pretty much the appointment. I wasn't able to say much. I couldn't help him understand and when I did talk I sounded stupid and fumbled over my words because it was so nerve-racking. The therapist was a no fluff kinda person and was down to business. Which made it worse for me. It was hard not to help him and it was hard to sit there and watch her take notes on some chart about him. I know this is all part of the process and you do what you gotta do. As far as a after appointment plan, she was very aloof about what I was supposed to do. Probably because I mentioned Ryan is getting assessed with the school district in early December. After leaving the appointment I figured this was just an assessment and I would have to return to get a more detailed plan of attack on how to help Ryan.

As a result of the aloofness and the shockingly low score (I knew he was behind.. just wasn't expecting it to be SO far). I am kinda a mess today. I called my husband and cried because I feel like a failure. I should have done more with him. I should have just been better. I wouldn't really be able to explain how or what I should have done better, but something... I just can't help but feel guilty. I'm hoping tomorrow at our second OT appointment I will have something more tangible to hold onto other than a low score. Some shred of hope that this isn't a big deal and that Ryan will be fine, and that I can handle this, and that I'm not a failure, and that I am a good mom. I know these things to be true I guess but I just feel terrible. I guess I am more overwhelmed with this than I let others believe and that I do feel a sense of condemnation.

I will be ok though. I just have to bounce back. I have to put together a strict schedule or plan of some sort. Part of me is just overwhelmed with the idea that I can't seem to absorb or learn enough about what I need to do to help Ryan fast enough. I have to just get up and do something to help make things better. I can't sit here and read, I need to do something... but I have to sit here and read to figure out what to do and to figure out what to order, etc. Part of me is panics because I need to be more structured and I have come to learn that I am not very structured at all. WE have some structure but not enough. Maybe it's the whole idea of change. Who really knows. I'm just overwhelmed and there's no time to have a pity party. (cue slap to the face).

Ryan is of course clueless and happy as a clam. I can't lead him to believe otherwise. We will work together on stuff and we will have fun. I will orchestrate a cohesive plan within our little family to help everyone. There's nothing like trial and error, right? Fingers crossed my next post will be full of butterflies and candy gum drop joy. Hopefully I don't vomit my sadness crap all over the poor OT tomorrow.

Friday, November 18, 2011

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.