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.