It's been awhile... but there's much to say!

There is so much to write and I don't even remember where I left off. SO let's just get right down to business.. We've completed the RSEED testing for the school district. The last appointment left me in tears and is the real reason I haven't blogged. I didn't know what to think or how to approach the matter. I'm better now and am ready to share. So the school district classified Ryan with high performing autism... it's not a diagnosis but they say he falls within the "range". Our meting is set for the 13th to see what the school district is prepared to offer. When I left the last testing appointment there was talk of him not qualifying for the free school district preschool and that I would need to find (aka pay for) his preschool. This kinda sucked since the original reason for going through the testing was in hopes that he qualified for the preschool. It doesn't suck in the fact that he's not severe enough that he needs assistance. He will, regardless of what they offer, still get an IEP and will have options.What those are I don't know. I'm hoping they will go over that in the IEP meeting later this month. So that was that so far with the testing. I was crying in the last appointment because I wasn't really emotionally ready for the "autism" word. I'm not worried about loving him or treating him differently. It was more a matter of "I love him no matter what" but let's be honest, no mom wants a "broken" kid. In the big picture it's not a big deal, but I guess I just had a harder time with it than I let others to believe. Moving on...  

On the other hand, having said all that, the doctors on his case at Kaiser think the school district is mistaken and everyone I've talked to thinks the idea of Ryan having autism of any form is ridiculous. The nurses I've spoken to say that the school district mislabel stuff all the time and that Ryan doesn't indicate specific signs of autism that Kaiser looks for... though this made me happy it also confused the heck out of me! I asked the OT (who firmly disagrees with the school district and blames the signs they pointed out on the SPD) for the referral to the Kaiser autism clinic anyway for the sake of peace of mine. She agreed and put the order in. The nurse from the behavioral department called on behalf of the specialist (who we met with originally, who had little to no contact with Ryan, and who was the one who had to put the original referral in to the OT and speech therapist) said that Ryan has technically gone thru 3 of the 4 steps of the clinic already. Seeing the behavioral specialist was the first step, meeting with the OT was the second and meeting with the speech therapist was the third. Apparently the last step is a final evaluation done by the same specialist. And that thereafter you meet with all of them and they give you the run down. Something that would have been nice to know YESTERDAY! (Sarcasm of course.. just annoyed that I was in the dark.. but still comforting still knowing that they're not worried he has autism). 

So we're still meeting with the OT, and the speech therapist. We have our retake schedule set for the age appropriate hearing test. And we have our meeting set with the school district. Thereafter I have a meeting set with the behavior specialist to go over the documents from the school district. Did I mention these appointments are ALL THIS MONTH! Sheesh! Well, it's all to his benefit so no big deal. I hope I'm prepared for whatever comes our way. I just want what is best for him (aside from quickly medicating him). I hate to prove the school district ladies wrong because they really were wonderful. 

As far as his sensory diet goes, I got him a jumpolene, which he popped in a matter of days. I'm considering a real trampoline now. Since watching and catering to his ques new developments have transpired in his behavior. He used to be a good sleeper (which is uncommon for SPD kids). The OT attributed this to his mental struggle to avoid light touch. Well now that he gets a fair amount of sensory input he has had trouble sleeping. He fights me tongue and cheek and incredibly attached to Dylan. Wants to sleep with him and play with him. When he isn't here he naps in Dylan's bed and  specifically asks for Dylan's bed too. It's cute but it's clear that Dylan is the new "comfort blanket". I also originally thought Ryan to be more hyposensitive (under-responsive to sensory experiences) but lately he has shown signs of hypersensitivity (over-responsive to sensory stimulation): like sound bothering him, and though he is talking A LOT more, he whispers a lot. He also has been putting things in his mouth. I'm going to ask the OT her take on this. I'm sure he's just getting more comfortable with life and people since he is given a chance to release his energy. I see the OT on Friday... Hopefully I remember to bring it up. 

As for what Ryan has begun to show a real liking too... the tire swing. Down the street at Dylan's school they have a tire swing and he loves to spin and rock in it. Just non stop! Until he sees Dylan doing something and then he is quick to follow. He also can really ride his bike now! He loves it!! 

Well that's all for now. I'm sure I left you with an earful (or an eyeful... since you're reading). I hope to blog again sooner than later. We meet with the speech therapist tomorrow so I will try to blog an update on that before I'm bombarded with other appointments and then forget to update you on all the fun details of this journey. 

For those of you interested in reading a little about what SPD is, check out this article my friend Crystal sent me. Feel free to email me anything you see or think of! I can use all eyes looking for good play ideas and tools! 

Thanks for listening and praying for me. I know having a good support system is important! Love you all! 

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.