Last day of September, really?

SHHH- don't tell Ty it's the last day of September. I'm trying to hold off because once he knows- well one word: Obsession and Overwhelmed. Okay, that was two words.... but anyone who has a sensory kiddo knows the overwhelming holiday of Halloween. It probably is one of the worst holidays as far as a sensory kiddo goes. And therefore for the parents too! So not looking forward to this month- how terrible is that? I guess when you have a history like ours, pretty much no Halloween passes without literally all hell breaking lose. And you probably can tell, our hell is quite different. And it's just when things are finally quieting down over here. Three days of a much calmer little guy, happier kid, kinder, actually sitting and playing with toys for even just a little bit. And tomorrow, begins the month of October. The month that begins with the same letter that causes so many issues for my son: his obsessions get the best of him, he's overwhelmed, he's completely dis Organized in his brain. So, happy last day of September - wish us luck in October. Did I mention we are on three days of things being a little calmer around here? And please do not tell Ty it's October and I beg you do not ask him what he is going to be for Halloween!!!! If you do, well you get to come babysit :)

An entire day without......... and then waffles?

Here is the sleep picture of the day:

.......................................................... Yesterday was an entire day without behaviors. Not hitting, no throwing, no kicking, no screaming. A day that was quite nice, a day that was calm. A day that was filled with smiles, kindness, and engagement. This was day 11 of air tight, zipped bubble. And even though he was up at 2:30am until 4:30 am kind of manic- he ultimately went back to sleep. And then at 8:30am I could hear almost like a quiet little mouse. Creeping about, closing cupboards. Opening the fridge, the dishwasher door. What was going on? Who was in the kitchen? I was tired for sure- when you're up from 2:30am to 4:30 am, even just pretending to sleep (but you really can't knowing your child is wide awake doing who knows what??) But what is going on now? I finally muster up the strength to open my eyes and go check. Know what I found? My son, making waffles for breakfast for everyone. Yep, that's my boy! Making waffles to surprise us all when we get up. Pretty amazing.

Look what my little boy made me......

Can you believe this sweet little garden wine glass holder table was made for me and Brian by our little guy. He painted it orange because he knows I like orange. The only thing he asked for help with (since he's not allowed to use the saw, for obvious reasons) was the 4 triangle cuts. The rest was all him. Scrap wood we always have laying around- and lots of creativity and hammering of nails. This was pretty cool and a glimpse of what and who our son really is- when his body and soul are not being bombarded by so many difficult things that he is not able to properly process that make him struggle so much with everyday tasks we all take for granted. This is my boy! And he makes me so proud!

Sleep picture for Friday.....

I can't believe what he asked for.....

Happy Friday! Good morning sunshine! Hello birds and butterflies. What a day it was yesterday- Ty built I think 5 things out of wood, including a garden wine glass table. The kind that holds your wine glass while sitting quietly in the garden. Yes, he built one for me. He also built me a shelf. We didn't know what he was up to. He really didn't want anyone around. Not me, for sure not the behaviorist. But yesterday had to have been the most independent he's been in well over 8 weeks. Very focused, just building away. Do not interrupt the creative process, otherwise you'll probably get growled at. But all the hammering, drilling, creating, painting makes for really good sensory inputs into the body, which then hopefully means a calmer more organized little boy. And he was for almost the entire day. Not one behavior until the transition of dinner and potty. Pretty typical unfortunately. But ALL DAY- not one hit, not one thing thrown at me, and really not unkind words directed at me. A very nice change of pace. Now no reason to go into details regarding the behaviors last night- okay fine, blah blah blah... and off to bed. This morning, he slept until 6:24am- wow! Awesome. Went about his morning- he was a little off. You can tell by how he talks, how he demands something and if you don't comply- watch out. Pretty usual for him. A few minor behaviors, okay and then he said something. He asked for something. I couldn't believe my ears. Did he really just say that? What? Okay, ready....... He said oh my back, I don't think I can run and play today without my back being rubbed. !!!!! WOW - what an amazing moment to us as parents. He is asking for something to help his body. He wants his back to be rubbed because it feels good- to the body and the brain. WOW!!! Brian and I just took a moment and looked at each other, and smiled a very happy proud moment smile. It was amazing. Which of course daddy jumped right in and sat on him- which Ty likes while he lays on his tummy on the ground and used deep pressure along his arms, back, shoulders, legs. We know what kind of touch he likes and doesn't like- but really unless your hands are hurting, you're not doing it right. Ty loves deep pressure where you would think it would hurt- but not to him. He just laid there- smiling. What a beautiful start to our Friday. He then get focused on making a costume out of cardboard box for our dog Oliver. Lots of cutting, planning, tying, creating- for about 35 minutes. Then he was onto the next project in his head. Building more things. I hear hammering, drilling and carrying of wood. This is his project. He wants to do it by himself- I want him to do it by himself. He's in a calm state- he knows tool safety when he's better regulated. Last week, no access to tools, he wasn't calm enough, regulated enough, he was way to unpredictable. But I love when he can do it- this is what he and I do best together. BUILD!!!! Ever since he was little, he likes to use tools and build things with me. That's how we really connect. So I will come up with some project so I"m outside building too, along side him. Sometimes he'll politely ask for help with something. I help him, he says thanks mom. Because that is who my little boy really is! I am a proud mama this morning.

A sweet moment with littlest.......

My youngest, age 6 said the cutest thing today. She say's lots of cute things. One time when she saw a big RV driving down the road. She called it a "home bus". We all just smiled and laughed it was so adorable. And she's right. It's a home and a bus, kind of. So this morning, it definitely feels like fall for the first time. Cool, crisp, windy morning. She decides she wants to wear her black boots from last year. So I tell her to try them on first to make sure they still fit. And they do. So as she's sitting there putting her own shoes on, pulling the zipper up on her boots (which to me I marvel at because wow she can do things she's developmentally supposed to, and when you have a child who is developmentally behind in so many ways- you forget and lose perspective of what neurotypical children are able to do. Like, wow she put her own jacket on without help. Or gets dressed without crying. And even she has some pretty big sensory issues- but she simply says I don't like how that feels, so I'm going to change. Or that is too loud, please turn it down. Or she will cover her ears. Basically she has really good coping skills and self help skills. So, back to her cute thing she did this morning. BTW I thought I would put a different spin on the post. As yesterday was actually a really tough day- lots of behaviors. Lots of good times, but lots of behaviors and lots of tears. He needed restraint several times. He was an emotional roller coaster. It was just that kind of day. So rather then always sounding negative, which I try really hard not to because who wants to listen to someone when they are always negative. Now, yes what I post is the everyday facts of what we go through, what our day to day moment by moment is like raising a son with special needs. But in all of the tough stuff, which ours is pretty uniquely tough- we get those moments. So back to this moment with my littlest. As she was putting her boots on, she says these boots would be perfect for pony lessons when you sign me up. I said, pony lessons? She said yeah because horses are too big, so I thought I could take pony lessons. It was so cute- both my husband and I started smiling and saying how cute that was. This was a shared happy moment of enjoying the little things each of our children do that if you're not paying attention as a parent, not engaged with our surroundings, we would have missed. It's not always easy to pay attention to all these little things at times, especially when it's a tough moment. But we try extra hard to enjoy the little moments our girls also have. And some day they will realize it's the little loving moments that count and are so special. They may only be moments, but they are extra special and shine a wonderful light on each of our kids special qualities that make them who they are. And that I love!

You know things are improving when......

You know things are a little bit better when even after sleeping in until 6:45- yeah- and although he went right back into an obsessive thought and started in with behaviors; but when daddy stepped into help, he simply began giving him deep pressure touch. He scratched his back with firm pressure. And first thing which is amazing is Ty was accepting this. He usually resists especially the more dysregulated he is, the less likely he is to accept assistance to calm down and do all the helpful things we know help him- that makes it frustrating. But he was accepting, he allowed Brian to deep pressure massage his arms, shoulders. He just laid there and second after second was getting calmer. This was a beautiful moment. He may have started with behaviors, but this is how we know things are improving- he accepted the help he needed to calm down. And it worked!!!!! Now, it's only 8:30am. Never know what the rest of the day will bring- but I've already had a pretty awesome moment.

Wednesdays sleep picture of the day.....

A boy and his best friend!

Sleep picture of the day.....

This is a moment I enjoy- watching him sleep! It's like watching your newborn baby and all the sweet little movements they do when sleeping. First moment of the day- sweet!

Autism is making me cranky!

Up at 4:45am yesterday morning and not in a nice pleasant roll out of bed, stretch your arms, breath and be ready for the day kind of way. And a repeat this morning, but worse. Up at 5:00am which I would ordinarily not mind, usually Ty is content to watch a video, eat some breakfast and just lay quietly while the rest of the family sleeps. It doesn't matter if it's 5am or 2am. It's really hard when he decides everyone else needs to wake up because "I'm dysregulated and can't get myself under control so I"m going to scream at the top of my lungs and behave like a maniac". UGH.. it's so hard to properly deal with behaviors when it's so early and you were up the night before so early. This is when Autism starts to make me cranky! It's hard to handle the every day challenges of parenthood when you're tired. It's hard to handle the every day challenges of having a child on the spectrum with major behavioral issues. It's hard to keep your cool and calmness to get through a more difficult time. I don't think there's enough coffee to get me through the day. But I will. I have to. These are not choices. These are the privileges, the ups and downs, the calm one finds in the storm. Our day will continue as usual. Behaviorist will be over shortly. We'll continue working on skills, especially coping skills and finding alternatives when he feels angry or frustrated. We'll continue about the day just like everyone else in the world. I know there will be some very great moments today- and my eyes are always ready to witness the moment when it happens. If you're not paying attention, you will miss them- but I"m always ready to take in the special moment when it occurs. That is better than any coffee. Even when Autism makes me so cranky! So I'll be waiting for my moment of the day. It hasn't happened yet, but it's still early.

A glass of wine and good company....

A glass of wine and good company from the neighbor walking down the street who actually understands our circumstances more than most ever will because she has her own circumstances (hope that's okay to say that).... but as I was sipping my wine after a long day, opening old wounds at a SST meeting for Junior High, I yelled to my husband- quick get a glass of wine ready... and rushed it over to her as she passed by with her dog and son. That ended up being a wonderful time, enjoying a glass of wine with someone who is just purely kind. Enjoying watching kids who struggle so much in almost everything they do just playing, laughing and being kids, dogs just co existing in good compny, a second glass of wine (can't throw away good wine, now right!) One of the best evenings we have had in such a long time. Sometimes you never know how great it is to have a neighbor who you can enjoy a glass of wine with and simply appreciate every small thing that's good in that moment. It's what I needed, so thank you friend! It may only be Monday, and I've been up since 4:45 because of behaviors that began that early in the morning. But I'm ending this day pretty well- on many levels. I got through a tough meeting by myself, (I was so nervous) and I enjoyed some time with my husband, and a good chat with a friend. My kids transitioned back home well, we laughed at dinner, we transitioned to his potty routine, and things were happy and joyful! Happy Monday- happy happy day, happy moment, and now I'm officially exhausted and ready for bed. But a good glass of wine and good company was certainly an added bonus to today!

Here's the oops story

So, it was day four yesterday of our air tight bubble. Things were improving a little bit everyday with Ty. He wasn't demonstrating such aggressive behaviors. He wasn't so difficult to manage. He even had a few periods of good engagement time. He was wanting to participate in an activity with me. He was calmer, more organized (at least compared to the previous days), and just slowly as we say recovering from this 15 days of hell. It's going good- I even offer to go walk to our local market to pick up dinner. A place that we all have a favorite, so it's perfect. Ty's first choice was sushi (aka rice and seaweed roll with avocado and celery). But being a friday night I knew there was a chance they would be out- So I asked him what his second choice would be in case they didn't have his first choice. This sometimes alone can cause major problems. But even this day four, he demonstrated flexibility and gave his second choice of a smoothie. Great- okay I'm off! I get there and check the sushi counter and as I suspected they were out. Then I got focused on the other things to get. Plus I thought added bonus mom is bringing home dessert. Yeah, this will be a nice family night- after a long couple of hell weeks- things are looking a little brighter again- we haven't left our bubble now for four days. Not one step, except playing in the front yard. I get everyone's choices. I get gluten free bread because I do remember talking about sandwiches and Sarah agreed and in my mind so did Ty. Hmmm And I got ice cream!! This is going to be great. Here's a cheers to my family. I walk home with my groceries. I walk in the door and I'm excited to tell everyone I got dessert- yeah!!! Everyone asks what they got and I simply remind Ty that in deed they were out of sushi so he and Sarah will have sandwiches- He loves when daddy makes him a triple decker turkey sandwich. And then my oops. Oh boy my oooops!!!! Now I'm a mom. I'm a wife. I'm human- and first to admit I make mistakes. I forget things a lot, I mess up. Who doesn't, right? Well, this is a glimpse into my wild world. A good day, things improving. Lots of laughing and smiles. And then Ty yells "where's my smoothie???" "I wanted a smoothie!" Oh boy, it's starting. His over reaction to a pretty small event. But in his mind, there are no small events. Everything is a major catastrophe. Everything causes an eruption of yelling, screaming, behaviors, throwing. It could be small like I gave him the wrong spoon. (yes spoons can be an issue:( ) Or it could be a major issue. But when everything is a big deal and big major behavior problem, it all blends together. Yes, I forgot his second choice was a smoothie. I know, bad mommy! But I got dessert. Daddy will make you a triple decker sandwich like you love. But nope- never enough. I would have actually gone back to the store to get his smoothie- had he not started in immediately with such an over reaction. So there is no way I can reward this behavior by actually getting the smoothie now. He blew it at this point. He not only was screaming at me, but throwing objects. I know he was disappointed. I know he was feeling frustrated. I know he was not sure how to handle the emotions he was experiencing- let down, disappointment, something different, probably anger too. But as we consistently remind him- it's never okay to hurt someone, or throw things, destroy property. I'll sometimes accept the yelling and screaming, because if that's the only behavior- hey, he's not hitting- he's using his words. People who live in an Autism world that has behaviors like this- probably understand what I"m talking about. We are always asking him to use his words. It's okay to feel frustrated and mad. It's not okay to hit, kick and other behaviors. And yes, I made a mistake- an oops! I forgot he wanted a smoothie. But does it have to ruin the entire evening? Ruin the good run we've been having? Ruin our nice day that up until I made this "mistake" was going so well? Damn- I screwed up. But geez, imagine parenting where you are not allowed to make a mistake. Not allowed to be human. Not allowed to accidentally disappoint your child. Forget the times you just disappoint them because they are kids and you are the parent. This is how we have to operate. Knowing when we screw up, as we do- really what parent doesn't screw up, but this is always the response from one of your kids. These complete and utter world crashing on his shoulders because we made an honest mistake. It's not easy. It's frustrating. It's tiring. It's sad. It's stressful knowing I"m the reason that this behavior is occurring now. Had I remembered the darn smoothie- things would be fine. We would have continued the day with smiles and laughter. But I forgot the smoothie- so it wasn't. It ended with frustration, with yelling, with stress, with very difficult to control behaviors. Difficult to control since he was out of control, and for us to try to gain control of him so none of us were hurt or property destroyed. Yep, all over a smoothie forgotten. This is the life we live everyday. Not allowed to be human and make an oops. Or if we do, there are consequences beyond what most people would ever ever understand. But tomorrow will be another day. (or it's today, and yes he was up at 5:00am, feeling disappointed about some TV show or something- I don't know, I was asleep and can't remember what he was really saying. ). And it's continued to be a little bit of a roller coaster ride of emotions today. It's Saturday- the schedule is different, it doesn't matter to him that it's a weekend. That only means things are different. So it's a bit harder for him- we're all home. Not the same routine. It's different. So we'll ride the weekend, get through- lots of divide and conquer as we call it. And know tomorrow is another day. And will probably have it's own oops moment- what family doesn't have regular oops moments?

Day four doing great, and than.... I made an oops!

Okay doesn't get more frustrating than this.... typed out a complete post of my day. What the oops is about.... was ready to post it. And I have no idea what happened next, except I lost it all! Every word, every sentence, every letter- ugh! I will have to get back with the meaning of the oops. Too tired after a pretty decent day. So stay tuned, I'm retiring for the night!

A new day makes a big difference.....

We are going on day 3 of a very secure, zipped air tight bubble world. Other arrangements made for my littlest to get to and from school. Ty and I are continuing our routine. He naps in the morning. Behaviorist comes. We build, bake, and hope the day continues to go well. It started off with the morning school transition not so well. But after daddy and Sarah left- about 10-15minutes and he was calmer- it was just a transition fit as I call them. And then our day continued. I actually built a bookcase that is made to look like it's made from old wood crates- and it's made from repurposed fence boards I acquired from a neighbor. FUN! I love doing this stuff- and Ty got involved and was coming up with his own stuff to build. He had minimal access to a few tools with my very close supervision. And very strict rules. He displays as so much a funny aggressive look, building time is over- tools away! But I knew on a day like today, he was going to be able to handle it. Two days ago- no way! These are the ups and downs and all arounds we deal with. But I know him and I don't take risks- that's stupid since I'm usually first in line towards his negative energy! But I knew everyday since Monday has been a little bit better than the day before. Little by little, baby step by baby step- you see the difference in him. Not for a full 24hours, but there are moments, the next day a few more moments. He didn't explode when a "restriction" was placed on something. His defiance is less. He's more cooperative and more engaged. His posture is different. His eyes speak differently. He is overall in a calmer state. Now I didn't say calm state. He still can be volatile- he's basically still coming down from the last two weeks now of very difficult behaviors, very aggressive behaviors, very unregulated state of his body and mind. But as we have known, we get back to what we know about him- this bubble world where he thrives, grows, and can breath and handle life- so as I said, it's zipped air tight right now. Yes it's unfortunate. It's very isolating and lonely. But so is seeing how much your son suffers and is literally crawling out of his body to try to exist- and not with much success. Our job as parents is to protect our children, provide them with an environment in which they can thrive, grow, feel safe, be loved and learn. And so the bubble continues in order to provide this for our son. It's what he NEEDS! A new day has made a difference- and it shows!

Todays music choice.....

my reality check.....

Another sunrise, another coffee, girls off to school (however I wasn't able to take littlest), Ty taking his morning nap with the dogs. And I sit here, wondering, what will today be like? What will tomorrow be like? __________________________________________________________________________________________ In the summertime, it's easier to work things out. We don't have to be anywhere. I can easily arrange for things around Ty so that he doesn't have to leave the house. We know this about him- this is why this blog is Paradise in a bubble. __________________________________________________________________________________________ The teeny tiniest of "leaks" from this bubble, have caused this major disruption to his system. Cause him to be more agitated. Cause him to be more aggressive and angry and just plain dysregulated. _________________________________________________________________________________________ Why did I think this school year starting off would be any different then the time and time and times before? What was going to be different that in the blink of an eye, school starts and we are leaving the home environment to take little sister to school? _______________________________________________________________________________________ So my reality check today, not gonna happen! We can't allow these behaviors he's having to continue, it's too hard on all of us. It's exhausting. It's overwhelming. It's scary. It's dangerous. It has to stop. Well, two days now of not leaving for one minute our home environment. Other temporary arrangements for school drop off and pick up. ________________________________________________________________________________________ I miss being able to take my first grader to school. Have a few minutes with her inside her classroom. This is a moment that I pretend my life is "normal". By normal I mean, I'm able to leave my house with my family and enjoy time together and smile. By normal I mean, being able to eat a meal without the constant chaos and behaviors that interrupt almost nightly the dinner time we have together. By normal I mean, not being afraid that my son will flip out on anyone of us for what we see as no reason. We try to see the world through his lens- and I think we do a pretty good job at it. But one day it's this, one day it's that. It's a revolving door of what will set him off and how he will respond to "life" at any given moment. I want what most parents want- my kids to be happy and not have a family life that is in constant chaos and disarray. Never would I have dreamed this could happen to any family. We love our son, Autism and all his other issues. _________________________________________________________________________________________ Our reality of what happens day to day, minute by minute some days- it's like we watch him suffer and can't do anything about it. His true self is so locked inside his body and it's like winning the lottery to find the key to let "him" out. In one word, it's just not fair that my little boy has had to suffer so much in his life. And in his eyes, we only make things worse for him. But we continually remind him that we love him, we are very proud of him, we know how hard he works, and he is a good boy. __________________________________________________________________________________________ So my reality check is what my life is. I thought I was going to be able to "make it" different and take littlest to school and pick her up. But reality check, the cost is too high. Ty's body and mind can't handle it- and this is the result. My reality check, why am I surprised. We know this about him. Why would it all of a sudden be different. My fault- back to our bubble. And right now we are going to have to work really hard to get some sense of paradise back in the bubble. ___________________________________________________________________________________________ So I will sit, listen to my calming music, and get into my calm place so that I can tackle what ever life has in store for us today. I will stay calm, and be patient and help Ty restore his calmness and get back in tune with his body so that he can have a happy day where he can grow, thrive and smile. Wish me luck!

Sleep picture of the day

My cello music.....

A new day, another sunrise, another breath of fresh air, another morning that starts with my music. My latest love is the cello. I particularly love this album- by Steven Sharp Nelson. Always puts me in my calm place. Now I myself am not musical. I do not play any instrument- okay I can play Mary had a little lamb on the piano and a few Christmas kids songs, but believe me I'm at a 8 year olds level. I should never have quit when I was 8. So I do love listening to the piano, George Winston, Jim Brickman, so many beautiful composers. And now the Cello. So I thought I would share, as a new day is a new beginning. I even told my husband that I would love to learn to play the cello. Maybe someday! It's important to have things to look forward to.

when will this end.......

By when will this end, I mean- the cycle- the cycle of whatever is causing our son to behave in the manner he is- his obsession - his complete obsession that has taken over his being- his body, any control he may have had over his self before 10 days ago. Go back to last Thursday, September 5th- it all started to our surprise the obsession in his head to "buy something". It ended our nice start to the school year, it ended the transition of a good string of many days in a row of calmness, kindness, engaging, helpful, completely almost present of HIM.... and then little by little day by day that obsession got into his head- and everything has continued to go to hell in a hand basket, as they say. I really thought yesterday was the end of it- it has been going on long enough (we usually do see a pattern with these behaviors). And my husband took our littlest to school once again, giving him the break and exposure of leaving our house. And yet, this morning after he woke up from a normal morning nap he takes, and the behaviorist came over to the house- he as quick as a flash jumped into behaviors and literally riding off on his bike "to buy something". Oh crap is all I can say. He can't be eloping again. Eloping for those that haven't heard this word used in this way, no he's not off getting married. He is "running".... or in this case riding off. He rode his bike off to the local drug store around the corner, and to our surprise had raided his sister's piggy bank and took her money. We caught him before he was able to purchase anything. Slowly we just said, it's time to go home. And of course I was smart and even though he ditched his bike in front of the store, I locked his bike up with ours so that he couldn't take off without us. So we go home. Well, we thought. He purposely was trying to make us crash while riding the bikes home. Even to the point that he crashed into the behaviorist, ditched his bike once again in the middle of the street and ran "home". Okay, he's home now. Oh and of course I had my purse so that he couldn't lock us out of the house again. He couldn't steal my money from my wallet to try and buy something, so I thought we were in good shape. He is too damn fast and smart- and this obsession is completely taken over him. He ran into the house- and he knew my purse was in the garage hidden, I thought- but he knew where it was- and went back into the house and locked the house door from the garage and the front door. It's relentless, it's ongoing, it's becoming dangerous. He's done this once before, to this level of what I call "craziness out of body experience". But not for 10 days- not with running off. So he had run off Sunday night- luckily I was able to follow him, and he ultimately calmed down. This morning, he was off and running once again. And I was just telling the behaviorist luckily my girls are at school. What the "he...." do I do if I have Sarah. The littlest. I can't leave her to chase after him. And so the morning continued. He calmed down. He participated with "things" with the behaviorist. He seemed to once again snap out of this. We ride bikes to get Sarah and home. Things seemed to be fine. Until he jammed home quicker then a flash, which is pretty typical for him, no surprise. He usually likes to wait for me on the front porch to say he beat me. Okay, fine- except he crawled through the dog door- got in the house. Once again found Megan's money, I didn't even know where he found it from- and began to once again take off to the store. He said he was off to target, or CVS. Now CVS is around the corner. Target is about 2 miles away and I"m pretty sure he doesn't know his way there- but he is full of surprises these days. Sarah and I hadn't even gotten into the house before he was saying he was off to "buy something". UGH!! What do I do, I have Sarah with me now. As if my words mean anything to him in this altered state, I keep it simple and simply say "home now" and I point to our house. Ultimately I realized he wasn't going to comply with my request- so I brought Sarah over to a neighbors house and just asked if she could stay there for a few minutes. Boy people have no idea- but that's another story. But at this point, comments are not helpful :( Anyway he and I almost have a show down in the middle of the street. Will I crack? Will he crack? What will happen next? Please no more chases to the store..... well he ultimately after lots of time complied and went home. So I thought okay, at least he's home. I lock up the bikes again (btw all bikes he could possibly ride are locked up right now so he can't take off (until he figures out the scooters are not.. but don't tell him). So I get Sarah from the neighbors. And here he comes- threatening us once again. So I call my husband at this point since there is no end in sight and I have Sarah- and have no idea how exactly to handle this. She and I go to another neighbors house and sit in their front yard until my husband arrives. Well, it finally ends. He begins to act like what's the big deal. We follow our behavior plan of ignoring him and his pleads to engage in an activity with us at this point. He then falls asleep in the house. Now my husband and I are left to talk about, what do we do? This can't continue. When will this end? We need a major plan discussion as ABA works for certain related behaviors. What about when it's an obsession- and obsession that takes over any rational thought he might have. Which is already impaired so much by his other diagnoses and issues. Autism, Mood Disorder, PTSD, we can probably say OCD they say, but really it's probably more of a symptom of some of these other things he has going on. And why- why for so long? Why won't it end? We ignore it, we ignore the pleads he has to "buy him something". Now a bit of history here- this isn't new. I think I mentioned before if we hear him say "buy me something at target-" wooo run the other way!! This is his dyregulated obsessive self talking and nothing will stop him. If one entertains the thought- it only feeds the obsession. And in reality- it's not any one thing. It's the lack of control and obsessive behavior he gets to try and gain control of himself, his world and his thoughts. This time it's a power rangers samari sword set. No big deal many may be thinking. However, he has a sword playset because he was a ninja for Halloween last year. He's very inventive, and creates these "weapons" to play ninja and karate. And one thing we know for certain- it's now about the "thing" he chooses to lock his brain on. Because in reality- nothing will please him and take this obsession away- except himself. We could buy him whatever he starts to obsess about- but it doesn't matter- it doesn't stop, it doesn't go away, it only feeds it and it grows and grows. And when we are working on functional language skills- asking for things, using his good manners to request something, to use his words to engage others, to state his wants and or needs- talk about oxymoron. Here he is clearly stating what he wants (or needs as he thinks so), and we are to ignore all pleas from him. This in reality isn't functional language like many may think. Where as if he simply requests in a nice manner a cookie. "Mom can I have a cookie please?"- well it's 8:30 in the morning, but since you asked so nicely, sure. Thank you for using your good words. Which of course if one of the girls asks for a cookie at 8:30 in the morning, of course it's a different answer- no, it's 8:30 in the morning. These are just the constant daily struggles that our family continually juggles, and then when he throws his obsessive self into the pot- all I can say is - what do we do? And so far, no one has an answer. So, I again wonder at the end of this difficult day once again, when will this end. I'm tired. My husband is tired. My girls are tired. Our family needs a break- and we need this obsessive self to move past and let our little guy come back, please.

Fight or Flight Article and information

This is an excellent resource on Fight or Flight- by Angie Voss, OTR at A Sensory Life. Picture Fight or Flight Information Source: Your Essential Guide to Understanding Sensory Processing Disorder ~Angie Voss, OTR Understanding what fight or flight looks like with a child is CRUCIAL in determining how to respond. The primitive and actual purpose of fight or flight is to divert blood from the brain to the muscles in order to respond quickly and with great strength as needed. For instance, you hear stories about the mom who lifted the car or tree off of her child...the mom was obviously in fight or flight to protect her child and the brain and nervous system responded accordingly. When the blood is diverted to the muscles instead of the brain, the brain is no longer in a cortical level of thinking or using executive functioning...it is simply in protective mode. This may sound a little scary, but somewhat like a wolf in the wild. They react and respond on instinct and survival...you can not rationalize with a wolf and ask it to sit for a treat, or to choose the raw steak over your arm. Ok, ok...I am getting a little graphic here, but my point is...this is the same type reaction our sensory kiddos have, but unfortunately their little nervous systems switch over to fight flight regularly, sometimes even daily. There has even been research done on this specific issue...the correlation between fight or flight and SPD. Here are some more examples of what "fight or flight" might look like for a child.... Kicking, screaming, biting, spitting, throwing things, etc A child may try finding any place possible where visual and auditory input are decreased, as well as it being somewhere that they will not be touched or are required to make eye contact. They may try to find a cozy and tight space where their body will receive much needed proprioception and deep pressure touch. Possibly under a table or bed, buried in your arms, or retreating to the corner of a room. They may cover their ears, close their eyes, and tuck their arms and legs in as much as possible They may run and try to escape from the situation at hand...without any regard to safety The child may lash out...keep in mind this is not the child being aggressive or intending to hurt someone, their nervous system is doing the talking. They child may scream, talk back, call names, cry uncontrollably (also the nervous system) It may also present in a much more subtle way, such as "checking out" or zoning out. You may also observe a quick change in facial expression and quick shift of mood and emotion...possibly to irritability, frustration, anger, or crying and panic.

My hope today.........

This is the apple cinnamon, gluten free dairy free coffee cake with ocean blue glaze that Ty (with some help from me) made yesterday to celebrate my birthday. He chose the ocean blue color because he said he knows how much I love the ocean. That's the kind of kid he truly wants to be. It's just too hard most days. So this is our second morning in a row where my husband is taking our little one to school, rather then Ty and I taking her on our bikes. This is a break day- a day with as little interruptions as possible. With minimal stimulation that potentially will overwhelm his system. A day that I hope will be full of very purposeful activities- everything providing the proper inputs and support to his over worked system to bring calmness, organization and at least a little regulation. A day that I hope he will smile more, engage more and feel more comfortable in his own skin. This is my hope for him today. If it ever seems like our son runs the show in our house- well it's because he does. Not necessarily HIM, because even on THOSE days he's not in control of Himself! It's the Autism, the Sensory Processing Disorder, the Post Traumatic Stress Disorder, the mood disorder. And he struggles to keep them all in check- to not let them take over his being. And that's why if there is just too much happening, too many inputs that his brain literally doesn't know how to organize and place in the proper bucket to achieve the proper output, to literally allow the things that everyone else never thinks twice about (eating, sleeping, all the things our body is supposed to do naturally and that system is in automatic control- sends the message and our brains respond with the correct response sending that message to our body.) Never really thought of it, did ya?? :) So much of what our bodies and brains do are without thought- it's how we operate as beings. So when those things don't properly develop, when messages are crossed, when signals are not ever sent or they flood the body to quickly- imagine the short circuit that happens. Kind of sucks, huh! I think so too. I know there's not one diagnosis to blame for all this. And I know a lot of people of special needs kids just don't probably understand even still our absolute dislike for these "things" that control our son. We love our son- you cannot even believe the unconditional love, support, admiration, and yes sympathy we have for him. No one should ever have to "suffer" and yes we believe he suffers a great deal- trying so hard to control his world, his body, his brain. The kid honestly probably doesn't even know what it feels like to feel "good". His bowels are a constant source of anxiety and discomfort- despite all of the medical worlds interventions. His brain is constantly flooding his system so that it short circuits and he literally can't deal and falls apart. His body is constantly telling him he is in danger- run run run- fight fight fight... you are being harmed, you need to protect yourself, you need to stay safe. Can you imagine- feeling this way ALL THE TIME! Our son does- he lives in this state. Every knows FIGHT OR FLIGHT. Well, it's part of our systems for a reason of course. But when your system can't regulate or send the correct signals therefore always triggering this fight or flight response- this is his every day state of existence. For him to not be in fight or flight- is quite a battle, quite an achievement, quite a process that literally takes so much energy, thought, hard work, and cooperation from not just him, but from me, his behaviorists, and anyone who really comes in contact with him. Because it's as quick as a snap that will trigger this again "danger" response and he acts on that. His body does it automatically. So, to say yes our son suffers- absolutely. He can only expend so much energy trying to physically exist everyday that it all becomes too much. And one of 2 things will happen. He literally crashes into a sleep state. (This BTW is my favorite, because the alternative sucks). Or two, he begins to have behaviors. He begins to be bothered by his environment and blames everyone around him therefore (again this is his survival mode taking over his brain and body) and he's going to "fight" or "flee". Both suck! So when we have a day, that he smiles, is organized in his brain enough to play, to engage with another person, to eat, sleep, focus on a task. Pretty awesome is an under statement. Those days are our rare days. The fight or flight system rules him 98% of the time. But wow that 2% that we know exists inside him, is the most amazing little boy. So intelligent, so loving, so thoughtful, very creative, so talented. That's our little boy- and that's why we surround him with this bubble. Because the bubble is what helps him be him- it helps him be happy. It helps him grow and develop the way children should. It's what he NEEDS! And it helps him be more comfortable within his own body. Those leaks I always talk about- the things external to him, and his world- they only drive him into a hole until he no longer can hide. And he has to come out fighting- at least his body thinks so. If you don't know much about all the diagnoses Autism, Sensory processing Disorder, PTSD, Mood Disorders, ADHD, Bowel disorders. I encourage you to learn more, because the Autism rate only keeps growing- and all children on the spectrum are all so different and unique, and have such different needs. But one thing is common, they will all grow up to be adults. And if we don't help them and support them when they are young, well I know in my son's case- I worry and have deep fears for when he's an adult. Because at age 9 he struggles so much. But one day at a time and our absolute commitment to him - he will continue to makes strides. Tiny baby steps, one moment at a time, sometimes one breath at a time. But we will NEVER GIVE UP ON HIM! That is our promise to him and our family.

Sleep picture of the day....

The sun rises once again......

Sun is up, birds are chirping, kids are off to school. However it was my first morning since school started that we were not able to ride bikes to take Sarah to school. It was really a wonderful morning ride I looked forward to. But today, my husband took her. Ty needed a big break. A break -that means no leaks and no exposures to external stimuli that he can't in the moment handle. Just when I thought our rides were successful, our little teeny tiny baby steps- I know contributed to this major fall out that occurred yesterday. When his obsessions get the best of him- it's because he cannot get his head organized enough to even just breathe. It's beyond "off" mentally. Its control, its tight grip, its negative thoughts and behaviors and actions are driven by the obsession because he can't get anything else under control and organized enough to make sense of. Too many "antecedents" as our behaviorists call it- too many things in a short period of time that just blew him over the top and plummeted him deep deep down into the earth. Today, it wasn't looking so good at first- it started to take its hold once again. But after hours and hours this morning, he finally became engaged with me. He became more focused, he became calmer, he became more present. He still seems like he is just one quick blow away from falling- but I'm hoping as the day goes on, he'll just continue to climb up and out of this deep dark hell hole that took him over yesterday. It was 24 hours of hell, of chaos, of absolute helplessness. Nothing we could do was helping him- nothing we could do would calm him down enough to help him gain some control of his own body. This ride had to end on it's own terms- and this is why Autism is always the lead teacher. But today, the sun rose again, we breath fresh air, we smile, we move on moment by moment. That's what we can do today. And know "that" moment has now passed and is not the present. Thank goodness!

Today, Autism wins........

Too tired to write much. Today is my birthday, and Autism wins. In fact, Autism has absolutely kicked my butt and makes me mad as hell. Today, Autism, has taken control of my son and his thoughts and actions. Today, Autism has caused a lot of tears, a lot of frustration and a lot of pain. Today, Autism reminds me that it is always present, and as we celebrate moments, I'm reminded that Autism is still always the teacher. Autism has taken this day away from me and my family and especially from my son. Autism interferes with so much- especially on what everyone else would consider "special days". Today, Autism wins. Damn!

a moment of my day........

So a little bit better day then yesterday. Everything a bit calmer. And this is how things can typically look when he gets motivated or an idea: this is Ty getting an idea and trying to put it into action- actually it's the leftovers of his idea:

Next step after the mess is implementing his idea: He created a mini golf course and the crafts were making dinosaur heads to hit the golf ball through. He added ramps and other obstacles as well.

And then after all that thinking, planning, organizing, playing, this is what happens to my little guy: Notice it's that drawer again... this time his body is laying over it. This morning it was his head was in it. When he crashes, he crashes. This is what he does to regulate. In fact the moment before crashing asleep, he was saying something that honestly didn't make any sense to me, he got frustrated that I didn't understand, did a little swipe kick to me, I ignore him, he falls asleep. That happens a lot, a behavior, usually pretty minimal effort for him, and then he's asleep. So, who knows what the rest of the day will bring- one thing that is consistent, is his inconsistency!

Autism and sleep really are not friends!

My son sleeps randomly, he falls asleep in the strangest, most uncomfortable looking positions and places. This is just a sample of some pictures - I almost take a picture a day because he falls asleep in the strangest ways and places. Someday I'll have to make a book and include all the crazy sleep places and positions. Autism and sleep are very interesting. And for the most part, I don't think they are really friends.

I love this Autism poem.... and it's a good reminder too!

Welcome to Holland I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this… When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy. But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never, ever, go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland. Written by Emily Perl Kingsley

and we keep sliding....

I"m going to do something different today- as I can tell today is been a different kind of day for my son. Started off pretty decent... but as of this time almost 1:00pm- pretty crappy day. I've wanted to cry because I"m frustrated, but what does that do- but I"ve had to go outside, out of sight of my son 4 times already since 10:30am this morning. I've been hit, kicked, had 2 phones thrown at me, been locked out of the house (even though duh- I did bring my keys!). I've had a few other objects thrown my way... hate mornings like this. It's hard, it's frustrating- oh you wonder what set off the behavior. I had a recommendation when he had an idea- apparently he didn't like my idea... which is so many things are hard. He wanted to make ghosts and goblin decorations for Halloween and hang them up. I said, let's hang them up outside from our tree. He wanted to hang them up in the house- so then I was stupid and dumb and boom! Behavior escalated. I just retreat- I go outside, I let him chill out- I don't want to even be in sight of him. And just when you think things are calmer, boom, another crazy escalation of behavior- since the behaviorist is here with us this morning- she usually follows me when I decide it's time to get away and go outside. We wait it out- 15 sometimes 20 minutes (she keeps track, that's part of her job)... so this happened multiple times over the course of this morning- now I"m ready to go to bed. So, this is not an unusual day for us- but no less tiring. I"m going to finally eat my lunch, hope there's no more disruptions due to behaviors, and carry on with the day. Pick up my little one in an hour and 20 minutes, oldest will get her self home an hour after that, then daddy comes home an hour after that. Then our evening routine begins- and please don't let it be anything like last night.... I'm too tired.

The landslide of an obsession......

Another Monday- first Monday of the girls being in school. I guess somehow we did get through this weekend- but it felt like barely. That snowball from Thursday night, into friday, just progressed and got bigger and bigger. Our only saving grace on Sunday is my husband and oldest go out for a few hours grocery shopping, out to lunch. That's minus 2 people in the house. Then the 2 girls and I went to a cousin's horse show. That meant minus 3 people- leaving just daddy and Ty. He did a lot of sleeping yesterday, I guess the behaviors were exhausting him too. He sleeps to regulate- It was football Sunday- and the niners were on- so he was pretty excited about being able to watch football with Daddy. The only thing is he doesn't exactly sit and watch football. That's kind of hard for him, okay not kinda, it's HARD! So he and Brian play football with a mini soft football, while watching the game. Brian throws the ball to him and he dives and crashes into all the couch cushions. Yes, perfect activity- he has to catch the ball, which takes focus and coordination and then bam... he gets that great crash feeling that he craves so much. Plus the 3 of us were out of the house. So pretty much a perfect scenario for a good day. And after the football game was over- Ty and daddy went swimming in our pool (it's an above ground pool- it's great input for him, swimming, crashing, controlling his breath, it's like a giant weighted blanked enveloping his body- it's fantastic!). So again- recipe for success???? Well, not exactly- it certainly would have been a worse day had we not "done all these things, trying to set him up for success". But it still happened. It was delayed, it was out of the blue to us, but it ultimately happened. So, to set this up a bit- Ty is a kind of kid that input into his brain has to equal input out of his brain. So for example, a TV show that is fast moving, lots of action, lots of noise, lots of powerful inputs to the brain, well it really disrupts him and really causes dysregulation in him. We know this- we've tested it. I know what shows he can watch, which one's he can't and why. We have netflix- for him to sit and watch a show is pretty huge- and can be very regulating to him. But it has to be the right setting, the right show- otherwise- BOOM!! And we have a rule- because again we've tested this- and have noticed the difficulties after watching cartoons after dinner. Cartoons after dinner, of any kind- seem to cause a negative response to him- always resulting in negative behaviors. So again, we just have rules and it's not new, this is how it's been for quite some time. And during the day there are a few shows that are absolute no no's- and he knows that. Power Rangers, Transformers, Xmen... these are shows he likes- but his brain just can't handle the input that they on his brain- too fast, too much action and quick flashes from screen to screen- lights, sounds... it's just simply too much for him to process. And it has always resulted in problem behaviors. Not new- but when he's more dysregulated, like this weekend- for some reason the obsessions kicks in and takes over. His need to watch these "forbidden" shows is greater then anything else that he can control. Resulting in problems. He has had access to netflix- we have parental controls set at Y-7. So there are shows he's allowed to watch that fall into this category. But so do the "inappropriate against the rules shows". Not new- this is how it's been for a long time. But he always used good judgment and knew those shows were off limits. Until his obsession took over this weekend. We've seen the obsessions progress since last week a bit- obsessions with halloween, with buying something. When he wants to "buy something" I know things are heading down the wrong path. This is where he goes when things start to be difficult- it's like an automatic control wheel. He's off- he wants to buy something. But this road is so well traveled that it's not about anything - it's simply an obsession, something that is taking over his brain, and all things start to fall a part. And behaviors occur simply from this obsession. Once this obsession was so out of control- he was angry at me because I wouldn't buy him a mouse. It was literally out of the blue, no one had been discussing mice, or a pet mouse, but nothing was going to stop him until"you buy me a mouse from ACE." huh?? It was so bizarre. And scary- and really the more regulated he is, the less his obsessions take over. And to be honest, I was really surprised at how quickly a new obsession came up out of the blue- I know things were still new, with school routine for the girls, but he just seemed to be handling it so well for the most part. But it progressed like a fast moving snowball, mudslide, and then boom! It hit the wall last night. First it was refusal to go on the potty like he does EVERY SINGLE NIGHT FOR THE LAST 4 1/2 YEARS! for his irrigation. Then it was him negotiating to watch a show he knows is against our rules, or he won't go on he proclaimed. Well, our deal is if you don't go on the potty- he understands the consequences (getting impacted quicker, resulting in a hospital trip for a clean out sooner), and then if he chooses to not go on, then it's bed time. We can't make him go on the potty- all we really can do it encourage him, remind him why it's so important, and really everyone goes to the bathroom- this is just his time to do it. (He doesn't ever have bowel movements outside of this "potty irrigation time"... this is how his body operates). But this obsession was greater then what he could handle... and his reaction was absolute chaos, hitting, kicking, slapping, hiding, destroying. UGH... so exhausting- it's now 8:30 (way past our normal potty time with him- he's tired and this isn't looking good). It was a circus act, it was emotional, he was out of control, he couldn't control his own body- he was being destructive. When he is like this, our only thing we can do is to help him gain control of his body by having to physically restrain him. Which at age 9 is so much harder. But he easily can hurt someone and has, or he hurts himself. This is our only last resort to keep him and everyone in our family safe- when he's like this. So after about 45 minutes of this he locked himself in his sister's room- and hid under her bed. Okay, this isn't so bad maybe. He's escaping, he's crawling under a bed into a tight, dark place- like a cave. This can be good at this point. I unlock the door, he knows he's deep under her bed hiding- I do find him, and simply walk out of the room. I'm hoping, wishing, praying this is the end of this behavior- he's doing what I always hope- seeking the dark quiet cave space that can help him gain control of his body. And about 15 minutes later, he emerges. He simply say's- I'm ready to go on the potty. It's over. Pheww.. And the obsession was over. And he slept until 7:03am this morning. WOW..... it took everything out of him. And today we start a new day. Wish me luck!

a good week, but then...... ..

What a pretty amazing week we have had. I couldn't be prouder of my little guy. With Labor Day which means a different schedule, and school back up and running for the girls. Ty and I riding bikes to take Sarah to school. Up until Thursday night- pretty amazing. Best days we've had in honestly over a year. He's been calm, he's been kind, he's been helpful, he's been engaging, he's been happy, he's been playful, he's been organized in his head. Truly been an amazing week- But then something happened Thursday night. I have no idea what- these are the mysteries that we are always trying to solve- but it's just what it is. He became more agitated, he became more defiant, he became more aggressive, he became manic, he became well, just way more difficult and behaviors started up. He Was working on something up until 10pm. Of course we didn't want him doing what he was doing (making an automatic dog feeder). He became obsessed with the idea- and nothing was going to stop him. He was very dysregulated, very aggressive if we approached him. These are the big parenting decisions we have to make. And boy do we hate having to make them when we are tired and it's bedtime- ugh! But sometimes we know we just have to ride it out. Pick our battles, it's not the one worth completely struggling over. We were upset and frustrated- of course. This was a moment that we had no control over him. He had no control over himself. This is why it can be scary- no idea what's running this game- obsessions, mania, no idea. But he's out of control and as parents, we pretty much can't do a damn thing about it. But like I said, he wasn't destroying property, he wasn't hurting anyone, he wasn't hurting himself. Pick our battles- just our battles are constant. So this was one we just had to let it ride itself out. And it ultimately did- after a giant mess of dog food everywhere in the garage, messes everywhere, (btw cleaning up is one of our goals because he doesn't do it.)It's late, I'm tired, Brian's tired, he's running around like a chicken with his head cut off- having so many ideas, trying to put those ideas into something- and just being very manic over the entire situation. He was even saying "I know I know, but I have to do this...". And in my heart, as his mom, I know he does- it's something inside him that he has no control over, and it overtakes him. He gets this way over different things. Sometimes the best intentions for a reward system that sound like a great idea, but then in his reality, the obsession takes over and what was supposed to be a reward system for good behavior, incentives, becomes so difficult, his obsession takes over and now behaviors are occurring because of his obsession for the reward. It's such a double edge sword many times. But we know that about him, so we tread water very lightly and if obsession signs begin- it's like a scout ant......yelling retreat retreat- turn back..... :) So, finally Ty is satisfied with this project automatic dog feeder he was trying to make. It was bedtime, well actually well past bedtime, but that's how things are with him. So everyone in the house, fast asleep- it's dark, it's quiet, it's peaceful. And then at 2:30am, my door opens and there's Ty with another one of his obsessions right now "do I have to get my button changed tomorrow?"..... he has asked us this question everyday multiple times a day now for the past 45 days. And it's usually at all hours of the night. So once again, at 2:30 am- he asks me again. Despite our new bedtime talk- which is I give him the information about what we will be doing the next day. I say, "Ty, you are not having your button changed tomorrow. We will be riding bikes, to take Sarah to school. Oliver will be in the basket on your bike. We leave at 8:15am. Then we ride our bikes home and then at 10:00 A.(our behaviorist) will be coming." He'll usually ask one more time for confirmation- I tell him once again, no your not having your button changed tomorrow. Then he's satisfied- until the next time the thought pops into his little head, and he can't make sense of what we have told him repeatedly. So at 2:30, I again tell him no he's not. He tells me he's been up since 1:30am watching a show. UGH... and this is where I need to be careful. How OFF is he, can I just tell him to go back to bed, will this cause him to flip out on me at 2:30am? What information does he need right now that will help him to want to go back to bed? I can see he's still a little groggy and tired, so I simply tell him calmly to go back into bed. And I wait...... what's going to happen next? And he did. Alright! Success..... and he left all the lights on in the house- great so now I have to get up out of bed to turn everything off. But at least he went to bed. He slept until 7:00am. Not bad in our book. But I now wonder what will this day bring? We started off so well this week, things were going so good on so many levels - and then something switched in him? Why? So what will today bring? He's asleep right now- he always takes a morning nap- always- which for me is nice- it's my respite time. I make my coffee, and read the online newspaper, check email, and stay as quiet as possible because I do not want anything waking him up :) So, we'll see what the rest of the day brings my way! But I really hope obsessions are not it today- of any kind- they exhaust me.

Anxiety.....fear.... worries.....

Well Angie Voss, OTR is on a roll with another wonderful article about anxiety and SPD and tips to help manage it. She also gives a great clear explanation of anxiety in kids with sensory processing disorder..... and heck, adults too! My apples don't fall very far from this tree. But I love her professional opinion on the entire medication of these side effects, as she calls them, of SPD. I'm right with her. My son has been on the same meds for almost 2 years now, no changes- the only thing that actually helps him is the control of his environment he comes in contact to... that's why Paradise in a bubble ..... the meds he is on are important, we get that, especially one in particular, Clonodine- that is a really amazing medicine to help just calm him down... but no meds can replace what the control of the environment does.... and in our son's case, his system is also so fragile, sensitive, that the doses of certain meds he's on is all he can take because then there are side effects. So the proper doses can't even be taken by him, that's also why we are in this bubble world. Maybe if he could tolerate the proper doses it would help him deal with the outside environment better, but the simple answer is he can't at this point. So we get back to this bubble, with the combo of meds he does take, and the one thing that makes the biggest difference is controlling the environment. He is on the same meds he was on when he was in school, having hourly violent rages, running away, shut down, not eating, not sleeping. And yet almost 2 years later, same meds, we just now have complete control over his environment (or try to), since he doesn't attend school: and he eats, sleeps, plays, laughs, engages, smiles. Not that we don't have very tough days, of course we do, but it's not daily, it's not hourly, it's not dangerous (usually). You can't even believe the kid that once was when he attended school, and the kid today- this morning I told him my favorite part of the day now is taking the bike ride to school to drop off Sarah. He and I ride home, and laugh, and talk. Oliver hangs out in the basket we "made" for Ty's bike- it's been pretty ideal and perfect in my book.

Haven't gotten in the car once- I"m so proud of him- Before getting in the car, to take her or pick her up- well one word to describe it was HELL. The anxiety that came over him, the behaviors would start, the mean words, the anger, the object throwing while I'm driving. And we were only going less then a quarter mile. I dreaded these daily trips. But not getting into the car, riding bikes in the fresh air with Oliver is wonderful for him (and me). Now it's not like we haven't ever done bike riding before. We live in a town where bikes are the main transportation for many.. it's great. But we had lots and lots of experiences of riding bikes, and then Ty would literally stop, sit on the curb and say "I'm done" and not move. Hmm now what do we do? And that happened repeatedly. Or he even has ditched his bike and started running off. So with too many experiences like this, you just stop doing the activity. That's why this riding Sarah to school in the mornings and picking her up means so much to me. It's something we haven't been able to do- and it's been successful!! (well at least so far... it's only day 5 of the school year- but I"m optimistic). Baby steps baby steps, baby steps!!!! So these rides with Ty in the morning really are an awesome part of my day- because I know how difficult it is for him, and has been in the past. And he's doing it with great success! But Anxiety, and these side effects of SPD that Angie Voss, OTR, explains is real, and when you can take a minute to see the world through these lenses, the world is a pretty scary place from so many different points. That's why behavioral therapy only gets you so far- a good sensory diet is equally critical. Our behaviorists have embedded both behavioral therapy with the sensory diet and this is what helps Ty so much with everything!

Have a picky eater? I sure do, and these tips are right on......

Another great Sensory Tip of the Day by Angie Voss, OTR at www.asensorylife.com Picky eating doesn't really even describe what my son has gone through. Refusal to eat to the point that he loses 4 pounds in a matter of a few months. Becomes skin and bones. It's scary. And no matter what we would try, we just couldn't get him to eat during a few periods of time. He did do feeding therapy- which was actually not helpful at all. They took a pure behavioral approach, rather than this sensory approach. But thank goodness he was seeing his OT during this time and she was the one that really helped him. And helped us understand this eating issue, how to help him, and when you take this sensory approach it really improves. But everyday it's different. I can count on 2 hands the variety of foods my son will eat. But at least he eats- is it well balanced, no way! But he's not losing weight. He takes vitamins. He's healthy right now. But we also see under periods of more stress, more challenges to his system (ie when we went camping), he will literally eat only 2 or 3 foods. Oatmeal, cereal, and some form of crackers. That's it. But for that time we are gone, we just roll with it and know it will improve. So here are top 10 tips from Angie Voss, OTR. Top 10 Tips for Helping a Picky Eater- by Angie Voss, OTR Do not force a child to eat anything. Do not insist on having the child touch it or put it in their mouth. Do not bribe with a reward or insist that they take just one bite, this will only back fire on the nervous system in the long run. Respect that trying new foods is a multi-sensory experience and that the smell and look of the food may be overwhelming in itself...never mind putting it in the mouth to experience the taste and texture of it all. If the child is having an "off" sensory day, then expect the food choices to be even that much more limited...it's ok, each day may be different. Try not to talk about food all of the time. It is hard enough for the child as it is. Our society is so preoccupied with food and the child is constantly bombarded with food choices and experiences...all day long. If your child has a few balanced food choices, then let it be and let the food choices expand naturally (with a sensory enriched life of course to work on the sensory foundation and sensory processing). Offer daily opportunities to play and interact with food, yet in a fun and exploring kind of way. Refrain from even suggesting to "try it" or "taste it". Let it happen naturally. Offer daily sensory activities involving the power sensations. Offer daily tactile experiences, since the oral sensory system is a part of the overall tactile system. Right before mealtime prep the nervous system and brain by 15 minutes of vestibular and proprioceptive play. Prep the oral structures by offering gum or an oral sensory tool prior to mealtime and offer an opportunity for resistive sucking or blowing, such as a bubble mountain.