My evening routine..... (caution: the word poop comes up)

Okay, so I thought I would share my typical evening routine. It doesn't sway much from day to day... especially since my son doesn't do well at all with changes in routine. I'm sure many can relate. So, it starts in the late afternoon with a few "chores" I have to do - and I swear for some reason until these 2 items are done and checked off my list I feel a sense of weight hanging over me. The first is preparing Ty's flush. We mix 500ml of water, 2tsp salt, 1tsp Castille Soap. I then get a gravity bag- for those that don't know what this is- it's just like an IV bag you would see in a hospital setting- but it uses gravity to drain rather then a pump. So I add it to the bag, then I have to flush his "cord" line. That's literally a cord tube that hooks to his mickey button when it's time to start- that is external on his body. Imagine a beach ball- how you pull out the little plastic plug to blow it up- that's kind of how this is, but instead we pull out a little plug and attach this cord. Anyway, back to preparing his flush. Have to let a little drain to make sure there's no air bubbles. Oh we have learned this one the hard way one too many times- how bad would you feel if you either A. forgot to turn the flush on so it drains, or B. didn't get air bubbles out of the line so it doesn't drain- and there's your kid, sitting on the potty, waiting, waiting, and waiting- but he never notices, never tells us, hey, it's not draining... nope- and if we don't physically check the bag at some point- (which has happened) then he has sat there for an hour, and nothing! Oops. Oh boy- how are we going to make up for this one? A good day a cookie works, a bad day- oh man just watch out. But a little confession here.... shhh... his potty time can sometimes be a nice little respite. Not always, as one of us usually has to entertain him- play a game, just be with him. Which as you can imagine isn't the easiest task at the end of a day, there's still dishes to do, girls to get ready for bed, make lunches if it's the school year, homework, etc.. yes lots to do in the evening no matter how well we plan. So, his flush. Sometimes he's occupied by a video, sometimes by his DS, sometimes by crafts. Pretty much never know what will help him to stay calm and sit. Which is what he has to do. And from anywhere from 45minutes to 90 minutes, if he's not all "cleaned" out. Sometimes we take him off too soon, and well, ugh! So, this is how it works- we let the 500ml solution drain directly into his colon, just below his cecum (anyone take Anatomy here?)- thank goodness I did. Anyway, it literally irrigates his entire lower bowel - emptying as poop into the potty. Sorry for the graphicness - don't think that's a word, but oh well... poop in our house is an every day conversation. I'm not kidding- ever since June 15, 2004, there hasn't been a day that my husband and I haven't discussed his poops. Day 5 of his life was when we knew something was wrong. So flash forward, here we are, still discussing his poops. We always have to monitor because we need to be wary of signals that he's impacted- backed up... but this is not constipation like you think it is. His stool gets stuck all the way at the top of his large intestines, sometimes flowing into his small intestines- now that's not supposed to happen- it's supposed to be a one way valve. Well, not his and so the minute he gets backed up, it's pretty bad pretty quick. Vomiting, no appetite, bloated, and then it means it's time. Time for a hospital visit for disimpaction. Luckily he has the button, so it's not surgical, but he's under anesthesia, he's flushed with their solution, sucked out, they probe, poke, and suck with a vacuum. The button is taken out for them to access inside- so that's why it's not surgical, he literally has an exposed hole from his abdomen to the world. Kind of strange- but also good. So, back to my routine- you can kind of see how important these nightly flushes are- because even doing it every night (for the past 4 years 4months, and 6 days (not that we've counted)he still gets impacted 2 to 3 times a year that require a hospital visit. They know us well over at our children's hospital- they take good care of him and us and try their best to ease all his discomfort and get us out of there as quickly as possible. Alright, nightly flushes. Like clockwork they occur at 7:00pm every night. Yep, and if we get too far from that time, oh boy- again rigidity. So it pretty much controls our evening, and if it's not a night he's willing to cooperate (meaning just get on the damn potty), wow it becomes a circus act. This is where his PTSD really kicks in. Those hospitalizations since he was 2, invasive tests, doctor's visits, more hospitalizations, and more procedures- can you imagine when you have so many struggles, and this all occurred well before we knew about his Autism, Sensory Processing Disorder.... all delays, all issues, all behaviors were originally blamed on his bowels. Well, a lot got missed for a long time. But that's another story for another time. Back to his flush. 7:00pm, Sunday, Monday, Tuesday, Wednesday, Thursday, Friday, Saturday, then Sunday again... yep- not one break. And you would think after doing this everyday for 4 years, 4monthes and 6 days- it would become a routine for him- but nope! Every time we never know what to expect from him. And even on the greatest of days, he's so happy, so joyful,playful, engaging- and then it's flush time. And it sometimes will be no big deal, but sometimes it will turn that amazing day into well, crap (no pun intended)! So, after he completes his flush- we find it's best to not even let him leave the bathroom otherwise it's very hard to get him back for teeth brushing. So off potty, jammies on, now it's time for teeth. Now he has brushed his own teeth maybe 10 times in his life- he sometimes can do it- but most days, not happening... and it's better then it used to be- (it was like world war 3), but daddy still brushes his teeth every night. It's a goal of ours, but so not a priority when he isn't able to leave the house- I"m sure you can understand that. Believe it or not- it takes a lot of coordination, planning, higher order brain functioning /thinking to brush your teeth. Many of us, don't even think twice as to what we have to do- and for little kids, when they want to mimic mommy and brush there teeth- oh it's so sweet... my girls did that-not him! Gee, wonder why?? Every day tasks can be very difficult, when you have Autism. It takes a lot of planning and processing and heck just the damn toothpaste can set him off, putting something in his mouth can feel horrible to him, causing a reaction. Now, it's so much better then when he was younger. We have one kind of toothpaste we use- nothing else ever. Brian is so careful to be gentle, to help calm him, let him know he's almost done. We've got a system! So, after teeth- our summer routine has been to watch one family show. You have no idea how exciting this is for us. We can all actually sit down in the same room, at the same time and watch a show (of course that I choose because we would like to prevent a war from breaking out at bedtime). Ahh it's so nice to have this- we historically never could do this, never all together. It just ended bad every time- then you begin to realize this isn't working, separate, off to bed. So, it's really nice to have this little bit of family time. Right now, it's the "Cosby Show" that's chosen. We all agree, it's appropriate, and mom and dad enjoy watching it too. Then, hopefully we got through this moment without problems (yes that still happens)and Brian takes Ty to bed. I take the girls to bed. (I have to admit, I really enjoy my night time talking time with them. It gives me a chance to talk about our day, put a spotlight on them without disruption and their favorite part of the day, how was this, how was that- good night time stuff!). Then hopefully off to sleep-land I go! (oh, almost forgot, before teeth brushing- med time!... luckily he knows how to swallow pills- but we put them all in one little scoop of sorbet, again same flavor, same brand, always) These are his night time meds. Now off to sleep; and I pray every night he will sleep at least until 5 or 5:30am. Anything past that- wow bonus! He has a lot of sleep problems. It is not uncommon for him to be up at 2am in the other room watching TV. This is a good scenario. The bad scenario is him awake at 2am, and having this need to have the entire family awake, he is literally bouncing off the walls, and disrupting all of us too! That is not a good night! These occur more often when he's more dysregulated... I put these definitions in the column from my favorite websites. The special needs world, brings a whole new language. Heck, I'm professionally a mom, care giver, nurse, behaviorist, therapist, Occupational therapist, teacher, pharmacist, anything else??? You get the picture. So, we hope sleep goes well, for the entire family, because soon enough, we'll be woken up to start a new day all over again.

My peaceful music this morning........

https://itunes.apple.com/us/album/imaginary-roads/id254821403

great info from A Sensory Life- on Auditory strategies....

"Understanding Your Child's Sensory Signals ***Answers from Angie*** Question: Is there anything I can do to help my kids regulate their voices? Also, why is it that my kids are always complaining about everyone and everything around them being too loud, when they are often the ones making the most noise? Answer: The combination of sensory signals you listed indicates auditory processing difficulties...the brain is having a difficult time processing sound, volume, pitch of voice, etc. And it is very common for a child sensitive to noise to be the noise maker. Sound is heard differently when projected from others and the environment vs coming from their own voice. A few suggestions: Have them wear noise cancelling headphones...not only to protect their nervous systems from uncomfortable noise, but it will also lower their voices since they will hear their own voice magnified. Also, be sure there the home environment is calm and quiet (no background noise from a TV or computer). It is even more difficult to process auditory input when there are alot of competing sounds around them. And in regards to working on auditory processing the most effective way is to work on auditory skills while involved in a movement activity. And over time auditory processing skills will improve and process sound more efficiently. (I will post separately for you on this topic). I have linked a handout for ideas for in the classroom as well. http://asensorylife.com/auditory-strategies-in-the-classroom.html" BY Angie Voss, OTR

Here's a look at my story.........

I am a wife, a mom to 3 children- ages 11 1/2, 9 and 6. I do not work outside the house, as my son who has Autism, PTSD, ADHD, Bowel motility disorder with cecostomy is not able to function outside our home environment. I mean literally has no coping skills, no ability to self regulate and lives in fight or flight. As you can imagine this causes a lot of disruption, chaos and absolute craziness at times. When he was little, we could "make him" go by strapping him into a stroller, buckling him into a car seat and yes, we did have a lot of screaming fits. Well, we've begun to understand the full depth of his issues, both medically and psychologically. Now at 9, he no longer rides in a stroller, can unbuckle himself from seatbelts. And my scariest moments- him running- literally just running away like a scared deer just bolting! This makes for a very interesting life to say the least. We have behaviorists in our home every day working with him, he's seen a psychiatrist since he was 5- oh yeah, the reason for our first visit with her- "HE WOULDN'T LEAVE THE HOUSE"! No joke. So now 4 years later, well he's a lot bigger and stronger so this makes things way more challenging. This makes life as most of us know it difficult, interesting, and pretty much everyday a whirlwind. I have yet to meet another family in a situation like ours- So this is my story- and our family's journey to help their child who suffers so much from the external environment- all the while raising 2 daughters and trying to have them exist in a world outside our home.

well, not sure if I should say it.....

Well, happy Tuesday morning. My oldest has her first "paid" job- being a mother's helper 3 houses down... so nice for her. Ty and Sarah are actually... ohhh do I dare say it- it tends to blow up in my face to even think happy thoughts... okay I will.... they are playing so nicely this morning- together!!! First they built a huge fort, so yes of course that means one room is completely occupied and a mess. Then they moved on to a new clean space, and are playing so sweetly together. They are using polly pockets, that are on a farm, with Duplo and lincoln logs... can you say hodge podge of toys! That's how my son rolls though- he can take the most random items and link them in his play. And the amazing part today is HE IS PLAYING!!!! This is a very big deal in our house. He will go 6, 9 months without playing without playing with a toy. It's really hard to watch- he is a little boy and for him to not be organized enough in his brain to sit and just play- well, it's really hard. When he does play, it means he's better organized, calmer state, able to focus, regulated enough to enjoy playing. And for him to be playing with his little sister- well, that's just icing on the cake, especially if they are getting along, he's not screaming at her and telling her she's "doing it wrong". Which is usually the case, sigh. So, I will forget that my house is a complete disaster, that we can't even walk without stepping on something, because as I look at my son, who has a horse, he has attached his Woody doll to it, and gave the horse a bath and setting up the rest of the horses for dinner time- wow. This is what I call, a moment! I don't get good days, there are always hiccups to our day, behaviors, one thing that occurred. But what I get are moments. I'm sure many of you mom's with special needs kids understand what I am talking about. Because even on the best of days, for me, it's still a pretty hard day. We always end our night with his nightly bowel irrigation on the potty. And this is of course a nightly trigger to his PTSD. In fact, the other night he quietly came up to me and asked if he needed his button changed (he has a mickey button (which is a feeding tube button) in his colon, where the appendix used to be). Anyway, still a few times a year he has to go into the hospital for bowel disimpaction- and to say that's a hum dinger of an experience these days is an understatement. Put it this way, the Anesthesiologist was ready to meet at us our car in the parking lot to give him an injection of Katemine (spelling??) it's a horse tranquilizer- but that's how bad it gets now that he's gotten older. And this is with a lot of pre-meds at home. We gave him 5 x his usual Clonodine- and luckily he could only protest with his eyes closed and words, while my husband carried him into the surgery center. (We are on a first name basis over there) They know us well and if they don't know my son, they've heard of him! Anyway, where was I, oh yeah even on a great day- it's still harder then most people's day. But that is why I live for a moment, I live for a happy smiling pure joy moment that I can get from my son. My girls, well I get those moments a lot. They are amazing. I'll talk more about them later- but the ultimate joy I can get as a mom, is when all 3 of my kids are actually engaging in an activity having fun getting along. Now this experience usually only happens once every few months if we are lucky. Ty and Megan especially struggle to play, be in the same space, cooperate, not compete, control. Both are so inflexible it drives me crazy most days! Anyway, that moment when it occurs- is like fireworks. It usually only lasts 10, maybe 15 minutes before a fight erupts. But for those 10, 15 minutes- I smile, I observe from the distance, I soak it all up and allow myself to be with them in that moment. It's beautiful! As a parent, I definitely had different ideas on how my children would play, engage with each other, what there individual relationships would be like. And never in my wildest dreams could I have imagined the life we have and the struggles that have been give to us. And for adults it's different, we can adapt, we can cope, we can adjust. (Well, usually- stress certainly makes all these things harder). But for kids, siblings, that are just trying to figure out the world, their place in it, their role in the family, who they are- it's not easy to do when you have a situation like ours. But I hope one day the girls will realize we did the best we could at the time, with the information we had. We loved them, we expressed our love for them, we tried our best to balance this crazy life. And I know some days we do a very bad job at it, but I hope other days, other special moments, make up for it. I hope. My dream for them is they will grow up to be compassionate, patient, strong and understanding young women. I hope they will have confidence and self esteem to go tackle the challenges of the world. And I hope they will grow up to truly love, and be more patient with their brother. I know most days when you are that young- it's hard when all you see is the behaviors. But I hope they will one day really see who he is- and the behaviors are not who he is. We see this little glimpse of him, every so often these days (we used to say it was 2% of the time) It only occurs when every star is aligned just perfect in his universe. Not easy to do- but when it occurs, wow. I have the most amazing, intelligent, kind hearted, loving little boy. That's why we do what we do. We know who's in there, we know who is waiting to come out most days. But most days are just too difficult. That's why we do what we have to do- that's what helps him more then anything in this world. We have always known and always told others- if we surround him with this bubble, protecting him from all these elements that cause him so much angst and pain... what an amazing HAPPY, regulated little boy he is. The more we allow holes in the bubble, the more dysregulated he becomes, he becomes very anxious, he becomes more angry, more aggressive. His appetite is affected, his sleep is affected, he is so disorganzied in his brain, to sit down is too much- so he literally at times walks around the house, just causing chaos, trying so hard to figure out this world. And realizing it's all too much and all things cause him pain. He literally lives in fight or flight unless we pull back the bubble- tight for a while to get things back regulated for him, then we can loosen it a little (and I mean a little).... but the simple act of getting into a car, to drive 1/4 mile to pick up a sister (not even getting out of a car) is too much- he physically changes the minute we are transitioning into the car- he starts yelling at everyone, his anxiety takes over and he begins to be aggressive. Now it's not like it was a year ago- that's an entire other story- I"ll get to later. But put it this way, just 2 x having to pick up his sister- changed him and dysregulated him so much- that for the next 10 days we dealt with aggression, property destruction, him needing restraint quite a bit, me having lots of bruises from being kicked and hit- lots of mean words and screaming fits. Ugh... our typical day- so not easy. Me telling the girls- to go to their safe zone- yes we have a plan and they follow it well. We will never ever ever let anything happen to them when he's in this rage state. And that's what it is- he's so out of control, there's no thinking, there's no rational thought, nothing... except pure rage. Anyway- I noticed yesterday, I wasn't hit, kicked or didn't have anything thrown at me. Yeah- that was day one of our recovery from that outside the bubble experience. (And trust me we have every professional, behaviorists, psychiatrists, doctor's, etc.... we aren't causing this- so save the judgements.. trust me- we've been judged, and judged and judged more then anyone ever should be- and if many people would have listened to us in the first place many years ago- we may not be in this position. But again, people like to judge when they don't understand something, when something doesn't fit neatly into our society's box. Luckily we have professionals in our home everyday for the last 1 1/2 years.... so skeptics, people who think they know, people who don't understand therefore it's not real..... talk to the professionals. You should see the amount of data we have on my son. Binders full. This is why my paradise is in a bubble..... and if this is the life we've been given- it's what my son needs to exist- then I'm okay with it. I didn't say it was easy- and some days it's impossible. But I do have an amazing husband. I'll end here for today- on that happy note.

Laughed when I read this......

http://www.laurashumaker.com/why-autism-moms-act-the-way-we-do/ I hope this is okay for posting- I look forward to reading more of this mom of autism's columns- especially as she has an older son- I always wonder as these boys get older, do they outgrow certain behaviors, do they get more magnified, just a lot of wondering. But this made me laugh on this Monday morning.. so I thought I would share.... and it is all so true! Thanks Laura for giving us mom's who can relate a good chuckle! ************************************************ Why autism moms act the way they do July 28, 2013 · by Laura · 2 Comments I have changed since becoming an autism mom. I used to worry about how I changed and wondered it I’d ever be my “old self” again. I am not worried anymore. I’m grateful to Matthew for helping become the person I am today. What about you? The following is the third in my summer series: *** Why autism moms act the way they do I ran into a friend at the dog park this morning and she asked me if I was “OK”. “When I saw you last week, you looked like you were on the verge of tears.” What was going on that day? Oh yeah… In the spirit of Chantal Sicile-Kira’s terrific article Why do children and adults with autism act the way they do? inPsychology Today, I thought it might be helpful to to write an explanation of another mysterious cast of characters in the autism community: Autism mothers. Autism mom (me) holding it together--for now Autism mom (me)holding it together but about to snap Why to we act the way we do? Here are just some behaviors you may see in moms like me and what they could mean: 1) We cry spontaneously for what appear to be weird reasons. Our specialty is crying in public and at IEP meetings, and let me tell you, it is not pretty. Cashier at 7/11: “May I help you?” Autism Mom: sniff, sniff, sob…”I’m not sure.Thank you for asking. I’m just feeling emotional right now.” Why do we behave this way? We aren’t sleeping Our already busy and emotionally intense days are punctuated with phone calls that catch us off guard and hurt our feelings. Our child does something amazing or really funny, we tell a friend and it is clear they don’t get why it’s such a big deal. We hold it together until the nice cashier at 7/11 say’s “May I help you?” 2) We join a book club. We think it’s a good idea to do something intellectually and socially stimulating,and then we never show up. Why? Evenings are hard. Our kids need us. We are drained. We did not read the book and worry that we’ll say stupid things just to sound smart. We are nervous about hosting book club at our house. 3) We are socially awkward. We didn’t used to be, but now we blurt out bold statements like “Hysterectomy? I had mine vaginally. What about you?” (or worse “has your wife had one yet? “) Why do we behave this way? We are immersed in the world of quirky kids. We’re out of practice. We’re tired We feel so lucky to be invited places that we are manic. 4) We bristle when well meaning people say “You’re a saint” or “Bless your heart” or”at least the other two are normal” or …grrrr, someone real said this to me “At least you don’t have cancer.” WHY? Because we love and admire our children so much. We would rather be considered good moms than saints. *** Can you share some more autism mom characteristics? xo Laura

Wholesome Dinner Tonight: Asian Chicken Salad {Gluten Free}

Wholesome Dinner Tonight: Asian Chicken Salad {Gluten Free} I made this last night- and trust me coming from someone who essentially despises cooking, unless it's in an oven- this was so good and so easy. Even for being Gluten free and dairy/casein free. And it was a hit for my husband and 2 kids... that's what I refer to as majority rules. There's always one that doesn't like something. And considering the one is usually the same kid, who at points stops eating, has gone to feeding therapy in the past, pretty much hates most foods, except oatmeal, cereal, and sandwich (made with crust cut off just so, just the right amount of veganaise, and one slice of the Oscar Meyer deli thin turkey - okay I think you're getting it- he's a bit picky and has some food issues- but these days- he eats, so who cares what it is at this point!!) Anyway, to get back to my most delicious Asian Chicken Salad- this is where I love the internet- Google dairy free, gluten free Asian chicken salad- and waa laa.. which one sounds the easiest... hmm I will be posting some of my favorite blog spots, and this is one for great recipes- esp when you have picky eaters, (including myself) and food allergies. So, want to try a new recipe- this is certainly a thumbs up review from our household. And even if you are not a food allergy household, you can just substitute for non gluten free, non dairy free (that sounds so weird to say- it's always the opposite where I have to make the appropriate substitutions). It's especially easy and especially yummy on these warm evenings! (and doesn't heat up your kitchen). PS I literally took 3 frozen chicken breasts, stuck them in boiling water for 35 minutes (check to make sure they are cooked as that can vary)- nothing fancy for the chicken- and it allowed so many of the other wonderful flavors to come through (and of course we leave out things we (I mean I) don't like, ie almonds. Happy cooking!

just now getting to drink my morning coffee (it's 11:15am)....

well, a kink in our morning routine- The AC was having a problem- and where we live- one word- HOT!!! I knew how to fix it- hubby went off to work, Ty was happily playing Lego's (that's a great start to our day!), so off to the backyard to turn off the circuit breaker for the AC.... oh first stop actually was to the computer- to see exactly what I need to do for a clogged AC drain. Two hours later- fixed... yaa hoo! So, luckily all went well and peaceful in the house while I was fixing it- I know that's not easy for my kids to not have my attention or my help. I just really wanted to get this fixed before it starts to heat up today! My dear friend picked up my oldest for a trip to the library with her daughter and for some fun after- that helps out so much! It's just a little calmer in the house with fewer people. Plus it's good for my oldest to be able to get out be with a friend, at the library (there favorite spot), and pretty much, away from her brother! So thank you Jen- that helps our morning so much! And I have to say as friday has come, I am so tired! What a week, and my anxiety is higher because of the behaviors we've been dealing with.... so just tired! Well, I am going to enjoy my coffee, stop typing, and enjoy the quietness going on right now. Ty is occupied by his behaviorist- they are learning how to throw different pitches. Did I mention my son is like the most amazing athlete! Whatever sport- boom he's like a pro. So talented- just unfortunate he's not able to deal with being on a team. He's played soccer on a team- he is pretty much frozen on the field- but he is very skilled player. Baseball- wow, he's a lefty, who throws left, can bat both left and right- watch out major leagues- he might just come out of no where some day. Tennis, yep- even when he was just 5 and 6- very good! Basketball- he can dribble a ball unlike most 9 year olds.. his only thing- height may not be on his side- but I know that won't stop him. Karate- he's really good at manipulating their tools- the bow staff, screamer sticks (now I have no idea how to spell these things- but this is how it sounds....) He's earned his white belt just from being at home with one of his behaviorists- who just happens to be a karate instructor/owner and has been working with him- Not bad, private Karate instruction in the safe zone of our house- that's his ideal! Anyway- it's incredible how coordinated and talented at athletics he is, but if you can't go out into the world without freaking out- none of that matters.. Well, cheers to a better Friday- my goal is to get through the day without being hit, kicked, and most importantly not having to restrain him today- he's needed restraint the last 4 days- which is very unusual for how things have been lately. We were going up to 1 -2 weeks - doesn't mean there was difficult behaviors, it just means he used better coping skills and responded to our assistance- rather then carrying it further. Restraint is just to keep him safe, keep us safe, and to keep him from destroying property. Not fun, so few understand, and as I"ve always said, it's one thing having a 2 or 3 year old having a tantrum/meltdown... heck one of the safest places for him was his car seat.... but just like kids do- we knew the days would come- he's bigger and stronger- but still has no coping skills. That makes life tough for him, and our family. But baby steps, baby steps baby steps..... we have a great team of professionals, and we all work together to help Ty everyday. And some days are better then others, and some days just suck. But there will always be tomorrow. And I never know what that will bring, but it's a chance to have a better day, have a few laughs with my kids, see my son engaging with our family. And if there's a chance of that happening- I look forward to tomorrow!

Our paradise, our beach...

My mornings.....

well, a typical morning in this household. Ty is already onto a nap by 7:00am, usually for a few hours (nice respite). Girls playing quietly, my soft tunes of piano or guitar playing- time to make my coffee..... had to give up Starbucks a few years ago- Ty just couldn't handle getting into the car and even just going through a drive thru.... it didn't happen without his anxiety getting the best of him and then him lashing out with behaviors and even at times trying to escape from the car... so that wasn't going to happen anymore. But my good ol' Mr. Coffee Espresso maker has been quite faithful the last 2 years- everyday, making me my cup of energy- I make my own Peppermint Mocha- and it allows me to use Almond milk. It's delicious! I look forward to it every morning... kind of sad, huh??? I guess it's my ritual. But drinking my coffee, listening to calm music, and things actually quiet in our house for the time being- allows me to breath for just a moment - before the rest of the day begins. Now, as some of that history I mentioned in an earlier blog, this blog to me is like my diary- and a place to share my fun craft ideas, recipes, and support for others who have struggles everyday, like our family. Because unless you know what it's like to deal with constant chaos, constant conflict, constant behavioral problems, constant medical needs, then it's hard to understand what some families in this country go through. And dealing with it everyday- well all I can say is it's hard-even on the greatest of days.... it's still so hard. Our great days are still filled with conflict. I just consider it like this, hey he only screamed at us today, I wasn't hit. Yes, my son age 9, who has autism, PTSD, Mood disorder, ADHD, Reflux, asthma, bowel motility disorder that requires nightly irrigation through a devise that is external in his colon, has probably been in the hospital more then at school in his lifetime- anyway, he has major aggression, behavioral meltdowns and major sensory processing problems.... and this is where my "paradise in a bubble story" starts. I do wonder if there is another family somewhere who deals with what we deal with. There hasn't been one specialist who hasn't said to us, well, he's very complicated. And this is in terms of his medical problems that are poorly understood, his mental health....everything. But also our society loves to put people, kids, everything neatly into a nice little box, so that they can fix it. And if you don't fit into this box, hmmm a lot of head scratching begins, many over the years have blamed us as parents. I'll save those stories for later. But We love our son, are committed to our son and our family, and we promised him a long time ago- that WE would never give up on him - as so many others have (professionally speaking). He can be the most generous, loving, sweet little boy- but his world is really tough, so tough that leaving our house- makes him literally try to crawl out of his skin. Think of it this way- he is allergic to the world. So our bubble is what we know helps him to be the little boy God intended. He is just a little boy... and has been through more in his short life, you can't even imagine. But like I said, we will never give up on him. well, behaviorists will be here in a few minutes, so better start my day and I pray today is a better day. He's just been really off the past week... and we have to really focus our energy into helping him. Helping him deal with life, deal with coping, deal with everything that happens throughout the day- because he has no coping skills!!! And when you're 9- ummm yeah, kind of tough- and throw major sensory problems, umm yeah, kind of rough, my sweet boy- we just love to see him smile and laugh and be a little boy- and that's not easy. So my day begins- and pray it's a better one!

what a day to start.....

well, a lot of history will come later- but for today- glad it's almost over. Not a good one when it comes to my son, who has Autism, and behavior meltdown. I've been hit, kicked, thrown objects at- not a good day. It started right when his behaviorist arrived this morning- and then occurred again when she was leaving. Geez, can anyone tell he has a problem with transitions. Those of you in the Autism world know what that means.... and so our story will continue- but for today- wow all I can say is I hope tomorrow is better. And those of you who also understand medical issues, I am off to get my son set up for his bowel irrigation- and yes that is exactly what it sounds like- flushing him out! Wish us luck- he's "delayed" it already by 15 minutes- not a good start... but goes with the rest of the day. I look forward to posting and connecting with those with similar situations, interests to share and support and of course VENT!!!!