A post from The Life Unexpected Blog by Marianne Russo: Dear School Personnel, Community Members, Teachers, Parents and Neighbors

A post I wanted to share from : The Life Unexpected by Marianne Russo: Dear School Personnel, Community Members, Teachers, Parents and Neighbors 2013 22 May Dear School Personnel, Community Members, Teachers, Parents and Neighbors Posted by Marianne under Blog tagged acceptance, ADHD, Advocacy, ASD, Aspergers, autism, Bipolar, cerebral palsy, child medication, CSE, disabled, educators, gossip, guidance counselors, IEP, Ignorance, kindness, mental illness, Neurodiversity, non verbal, parenting, parents, PTA, schizophrenia, school administrators, self esteem in teens, special education, special needs, stigma, tourette syndrome, tourettes | 154 Comments letter To Whom it May Concern, I am the parent of a special needs child. I was overwhelmed, confused, heart broken and struggling to unravel the complexities before me. Please do not pass judgement of me without knowing why I did not attend the school PTA breakfasts or community picnics. Please take a few minutes to understand why I did not take you up on your offer to have lunch or grab a cup of coffee. Although we see each other in the supermarket or at school functions, I don’t think you really ever knew me, actually, I can guarantee that you did not know me because just as my child was different, so was I. I was in survival mode to keep my family in tact and to give my child the best quality of life possible. I was presented with parental decisions that have torn me apart and kept me up more nights than I can possibly remember. I had spent most days of the week at therapy and doctors appointments and most nights up researching treatments and medication options. I was forced into isolation at times due to the stigma and misconceptions that are epidemic in our society. I became proficient at prioritizing my life and learning to let the little things go, to look at others with compassion instead of tabloid material and to turn a blind eye to the stares or ignorant comments. I did the best I could. I survived. I am one of the lucky ones, my child has blossomed and has exceeded all our expectations. I have now become strong, I have become confident and I have become a fierce advocate for parents of special needs children. The growth did not come without much pain and many tears but it came. So I ask you, please The next time you see a parent struggling with a raging child, a child terrified to go into school, a child making odd movements or sounds, a child that seems to be in a world of their own… .Be kind. Give a smile of recognition for what that parent is going through. Ask if there is anything you can do to help, give them a pat on the hand or offer for them to go ahead of you on line. The next time you have a birthday party for your child remember that their child has a hard time with a lot of sensory issues and social situations. Please send their child that invitation and know that more times than not they will not be able to attend but appreciate being included. Understand that in order for their child to go to the party they may need to stay for a little while and please make them feel welcome. When they let you know that their child cannot make the party consider inviting that child for a one on one playdate or an outing at the park. The next time you are grading homework papers please understand that their child struggles, some with learning disabilities others with the exhaustion of their disorders or the obsession with perfectionism. The Perfectionism is not necessarily to have the answers right but to have it “feel” right for them. They have spent hours doing what most can do in ten minutes. A paper returned with red circles and comments only hurts a child’s self esteem and causes school anxiety. Please understand that when they see the school come up on their caller ID their hearts sink, remember to tell them about all the gains their children are making as well as their deficits. Take a minute before that call and know that they appreciate all you do and want a collaborative relationship in their child’s education. The next time you are in the teachers lounge, please do not discuss their child. Please do not make negative comments about their parenting or their child’s behavior, it gets back to them and it gets back to other parents in their community. The next time you pass the cafeteria and see their child sitting alone please consider inviting that child to eat lunch in your classroom and be your helper that period. Consider working with a guidance counselor to set up a lunch buddy group in a different area. The next time they are at the CSE meeting planning their chid’s IEP know that they are educated, informed and confident knowing special education law. Know that they have found the courage to stand up to conformity and will explore every option to give their child the differentiated educated that will show their gifts and not just their disabilities. Understand that educating a child with special needs is one of the most difficult tasks a parent can face, know that the last thing they want is an adversarial relationship. Please show them the same respect they show you. The next time you are creating an educational plan please take into consideration that their child may have specific interests or obsessions. Foster those interests, instead of taking away that art class for a resource class consider adding an art class instead. Think outside the box, these parents do. The next time you see that child in a wheelchair unable to speak or control their movements, don’t stare, don’t look away, say hello. Do not assume that because this child is nonverbal that they are not intelligent or do not understand the awkwardness that you feel. Take a moment out of your day to show kindness, support a parent enduring incredible pain and just give them a smile. The next time your child comes home telling you how Johnny or Susie is so weird, take the time to teach about differences. Take the time to talk about compassion, acceptance and special needs. Please remember that your child learns from you. Be a role model, mirror respect and discourage gossip. The next time you hear a comment about how out of style these kids are, educate about tactile sensitivities and the fact that these kids cannot tolerate many textures and fits. Imagine what it would feel like to have sandpaper in your stilettos or tight elastic holding on your tie. The next time you see an out of control child do not assume it is bad parenting. Understand that many of these disorders have an organic basis, are biological and are real illnesses. When you hear the words mental illness, take out the “mental” and remember ”illness”. Know that it is this generation that can stomp the stigma and create a world of acceptance. The next time other parents are talking about “Those Kids” be our heroes, stand up for us. The next time you see a special needs child know they are not just special in their needs but in their brilliance as well. Take the time to meet our children. Take the time to know us. AFTER POST: Thank you for the tremendous response to this writing and requests to post or share on your blogs, websites or educator sites. This writing has been viewed over 150,000 times and I appreciate your support. Feel free to copy in its exact form and use author credits to comply with copyright without direct permission.

In the same minute......

I was just starting to post how amazing this moment we had tonight was...

How incredible it is to see all three of my kids actively engaged in one activity, having fun, smiling and laughing.

They were playing "balloon volleyball"..... you know, trying to keep the balloon in the air...

And I was a very proud mama watching this occur.... now this was about 2 hours ago..... and I thought I was in the clear to sit down, and gather my thoughts, and write about this proud moment.

And then in that same minute, my thoughts flew out the window and I had to quickly compose my energy to stop Ty from making an aggressive act......

It was calm, just before bedtime time, the girls are quietly watching a show, Ty was also watching for just a bit.... but then he started to get himself as we call it "all jacked up".....

meaning getting wild, which for him is quite a balancing act

He's a kid who gets so easily over stimulated, over excited, dysregulated that he literally cannot calm himself or his body down and things escalate into a behavior..

just as it did tonight....

So in that same minute, I sat down, then I was being threatened....

ugh... really-

and it escalated to a point that he was not coming back and needed "help" to calm down.....

I hate those moments... the one's where you realize, he's not coming down on his own... he'll carry through on his "physical threats, causing destruction"

But really, hours before it was such a nice moment. A moment that I've tucked way far back in my memory vault!!

That other moment, well, I try to put those in my delete file in the brain vault!

To say life is a roller coaster, up and down, spin around, jump through hoops, cartwheel through a grove of trees

well, that's an understatement! :)

My first born is 12........ and they had a conversation!

How awesome is this picture...... this is my Meggie boo- the sweet, creative, beautiful spirit- that certainly does her own thing......

and I love her self portraits- because it really shows her creative personal side of how she defines herself!

At dinner tonight, she choose to have Thai food, which we have never had as a family... and when Megan exclaimed how much she loves the wide rice noodle dish, Ty politely offered her the rest of his portion, and then she politely replied, Thanks Ty.

This is what other people call a conversation, and Ty and Megan had one.

Yes, pretty awesome moment in deed!

So here is to my Megan, my sweet kind and creative Megan, and we love you to the moon and back!

My sweet Sarah.....

The sweetest moment I've had today: watching Sarah play quietly by herself the game Mancala.......

I didn't even know she knew how to play

but I know she has watched us play it recently

She's so calm, so patient, moving the marbles from one place to the next, dropping one in the end as she moves them round and round the board.

And as I was watching her and then realizing what an awesome moment that is- seeing how grown up she's getting, now that she's 6 1/2.... full of love and kindness and still continues to make everyone who is around her smile!

I was just watching and watching...... and then she jumped up, screamed and ran off....

What just happened? That was so sudden

and then she screams "spider".... and was out of there.

This nice peaceful moment, we have music playing in the background, the sound of marbles moving around the wood board..... and then boom..... spider freak out!

I have to say, that was funny! Just absolutely funny.......

and now she's right back to playing the game.... moving marbles around the board, not giving a care in the world that she is playing it by herself, and having so much fun! Love that girl.... She really is the kid that always makes lemonade from lemons....

I know she teaches me a lot.... she's got good things happening in her future!

In that moment, they were happy.......

After the rough start to the day, I feel confident enough at 8:45pm that we will be ending this day on a joyous note!

The day was full of smiles, and I had 3 motivated children to "clean " the house so we could maybe put up the Christmas tree early.......boy Thanksgiving is late this year!

With them highly motivated, they were also successful, so I followed through on my part to get the tree out of the shed, and move furniture around so we can put it up!

What is it about a Christmas tree, lights, ornaments, that puts everyone at least temporarily into a good mood!

And it seems to weird doing it before Thanksgiving... but as this is day 2 of holiday vacation for the kids, it's not easy keeping them occupied, especially one sweet boy!

So we broke with tradition and put up the tree today.... and to watch them each ooooh and ahhhh over the ornaments that they remember from year's past, well, let's just say it's almost a tissue moment.

I loved it, and I love watching them talk about memories, and sweet moments of Christmas years past.

It's pretty amazing, considering what most of our day to day life is like.... but for that moment..... I just was glowing with the idea that right now in this moment, my kids are happy! That's pretty awesome!

Feeling frustrated

After what was a great day in the works, baking pies with all three of my kids-

each having a different role in the process, we were all smiling, enjoying each others company, talking about the holidays

it was a great day for most of it.

But I'm feeling frustrated because as great of a day as it was, it turned so sour last night.

A Sour that takes over all the goodness that did happen. A sour that makes us angry and reminds us we really have no control as parents.

That sucks!

An obsessive thought was intruding in his brain, taking over his calm self, taking over his ability to cope

And just when you think things have consistently for the most part been staying in this pretty amazing place, a place where we are breathing, a place where we are laughing, enjoying our moments, watching our kids interact together in such a positive way.

But there is always this lingering thought of when will this ride end?

What will be the "thing" that sets him off and he can't come back from?

He was up at 1:00am, went back to sleep around 2:30am, woke up again at 7:30am.......... and then BAM!

Started all over again.

Last night ended pretty bad, he just couldn't snap out of it, he couldn't pull himself back, and it continued until he fell asleep FINALLY!

It's going to be a long day if it continues. So far, after some behaviors early this morning, he did finally settle into the hammock, and seems to be calm right now.

By that I mean, not wanting anyone around, but that's okay!

It will be a bit of a walking on egg shells kind of day, but that's what has to happen to help so things to erupt.

He's like a volcano just smoldering, and then in another second boom!

But if we can just keep him at the smoldering state, then the day will be okay!

But I hate that a bad night seems to erase the amazing day we had.

But it's because the "bad" is "bad"......

and it's so trying not just as parents, but as people. And we see how amazing he is, and the kid he really wants to be..... but damn these OTHER THINGS just take over and don't allow him to just BE!

I want our good moments to define him, not a moment like last night..... and honestly it tells me we have things happening in his environment that he isn't handling, that are causing over stimulation to his brain, that are causing a disorganized brain that can't get a grip.

So today will be a hard working day to try and minimize what I see as potential triggers.

To minimize too many challenges right now because he's regressed and isn't in the same place he was even just yesterday - his body is feeling challenged, so we have to meet him where he is, and where he is at the moment... not where he was 10 minutes ago, or 12 hours ago, or 4 days ago.

We need to meet him where he is in the moment and try to help him through it.

Wow, this seems so simple as I write this....... and I guess in my calm mind I know this to be true, but the problem is when he elevates, it's a lot to stay calm ourselves. And especially elevates to aggressive behaviors, it's really hard to not react or to simply respond in the way our rational brain knows we need to help him.

But let me tell you, in the moment is a whole different thing. In the moment makes all this 100x harder, and it just sucks!

But as he just laid down, at my feet, obviously tired, curled up in a ball, I'm hopeful that his body will rest, and when he wakes up be more organized and the rest of our day will be all about purposeful activities to help better organize, and calm his entire being.

At least I hope so!

Do I have to get my button changed?

Do I have to get my button changed?

This is Ty's question to all things whenever something isn't the way it's supposed to be(according to his logic).

It's so sad, he hears Brian and I talking, and instantly says, Do I have get my button changed?

He came over to me this morning to tell me his button is oozing, I tell him it's okay after I just check it, and he instantly say's, Do I have to get my button changed?

This is something that is always at the top of his think tank, always present, always a concern, always in control of him.

And there is absolutely nothing we can do about it.

This is his reality, this is his routine, this is something he will have to deal with the rest of his life.

Can you imagine always having something like that that is always an ever present thought, that the minute something is out of sorts, your mind instantly goes there and tells you there's a problem?

It's not easy trying to understand it. It's confusing, it's complicated, it's something that causes him great distress.

And there isn't anything we can do about that.... other then listen to him, console him when he's upset, help him try to understand (the best we can), and help calm his fears.

It's always a presence, he's always reminded about it when it's around 7:00PM, it's after dinner, and it's time to go sit on the potty.... it's a part of him like any other part of his body.

but yet even though it's been 4 1/2 years, it's still just as foreign to him as the day he got it.

I do wonder if he will ever fully accept his button, ever understand it's purpose and importance, and ever realize how critical it is for his life?

.......

1:30AM wake up call

A 1:30AM wake up call from our little guy this morning. And for some reason, I just couldn't fall back asleep.

My mind started wondering, well, actually worrying is a better way to put it.

I could hear him moving about the house, I could hear him in the kitchen, I didn't know what he was up to!

I didn't want to get up, because I knew that would break up his usual middle of the night routine. It's wake up, get food (99% of the time a bowl of instant oatmeal), watch video in front of little heater fire place thing,

about 1 to 2 hours later, go back to bed.

This is pretty much ideal..... because we've had months and months of him waking up that early, and then waking everyone else up... which is not fun!

So for him to just be awake and do his thing, well, other then us wanting him to sleep, which we have absolutely no control over, it's pretty much the next best thing.

But in my woken middle of the night brain mode, I got myself all worried for some reason. Of course it really wasn't rationale.

But at the same time it's not that far fetched from our experiences in the past, not the long ago past.

So it was hard to get back into sleep mode.

I obviously eventually did, but not a very good one... more like sleeping with one eye open- which I kind of do most of the time anyway- it's just how things are here!

Love when old things become new again....

I hate the way I got out of bed this morning.

Ty yelling, Megan yelling, running around, screaming at each other, then at me.

Why? Who cares, I hate having to get out of bed to settle a dispute.

But moment is passed and I'm listening to them gleefully having fun playing Wii sports.

That's there old new thing. We've had Wii for years, and I guess it's that time of year, we are outside less, it's cold, it's been really windy, so I'm so happy they are playing Wii.

It's good for them. And I love that they are playing TOGETHER!

That makes me a proud mama!

A bad moment, is just that, one moment

Well, we had a pretty amazing moment last night.........

pretty amazing indeed!

They actually played a game, had fun, were within "touching" distance......

which in itself is amazing because well, let's just say being in the same room usually causes an uproar!

So this moment made me one proud mama!

Now another moment earlier in the day, one that was not so good, one that was out of anger

my little guy had a moment of lack of control over his mind and body and began to throw objects at me, which I was by the computer, therefore, object hit the computer and well...

we now have a non functioning computer! UGH

I hate when moments like that, which are truly just a moment in the day, but now we are a bit screwed because not everything on that computer was backed up... many of my photos, certain files, etc... you know-

way too much important information in a blink of an eye now completely inaccessible

and to say my husband is not pleased, okay actually freaking out- well YEAH!

because this one moment is now going to cost us A LOT OF money to try and remedy, if we can even fix this problem.....

oh the things that get broken, damaged, destroyed, torn up, in a moment of anger, rage, frustration.

I just look around my desk while I type this new post, and I see one, two, three, four, five.... broken items.... that I keep.... some of it is very special things to me, some of it I hope to "repair" at some point, some of it just now is garbage, which at one point was something I treasured, but in a moment became trash.

Those are sad moments..... and like yesterday's sad moment, it occurred in a blink of an eye, a flip of a switch,

and they suck because absolutely nothing we can do about it.....

I have holes in my bedroom wall and bathroom door, a hole in our kitchen wall, things put away because they wouldn't be safe to have out, and I used to keep most things away... but honestly I was tired of not being able to have "my things" out on display

it's one thing when they are little, but you look forward to those days where you can have more of a grown up house, with treasured items, with keepsakes, with things that I like for my house.

I know I could put EVERYTHING away, but I've come to the conclusion that is not living, it's not the way I want to live my life, it's not being very present, waiting for the day when I can bring my special things OUT of hiding...

That's just not want I want to do, it's not how I want my life to be defined... so I take the chance, I risk things, I hope and sometimes I'm disappointed, but honestly-

it's good for him to see my disappointment and sadness when he breaks something of mine in that moment of anger

it's good for him to eventually see what his actions have caused, what emotional response someone else has to his action.

When the sad/bad moment is over, he is affected by my sadness, he is affected by my clear disappointment that something of mine was destroyed....

can I get it back, no

can I replace it, sometimes but usually not

but when you have a child who has been so emotionally empty, emotionally unaffected, but is growing emotionally, learning about emotions, then honestly that by far is way more important than any item, thing, object,

I guess that's how I look at it....... and sure it sucks, but there are lots of things in this world that suck, and if it's one more way we can help our child, help him to understand (even if just partially understand) how his actions affect others,

well, that is just awesome!

So, computer may be broken, hope we can recover our data, but like all the other bad moments, it's just a moment and we have already moved onto the next moment.

Which he just woke up from a nap and told me about a dream he had.

A dream that he say's I made an awesome outdoor shower.

What's amazing about this?

Ty NEVER tells us about his dreams, he says he doesn't dream, (or he just never remembers them).....

But in this moment, he shared with me a moment of happiness he experienced in his dream.

Awesome!

My affirmation for the day........

What a wonderful day Ty and I had together yesterday..... full of togetherness

full of compromise, turn taking, and just existing and being present!

Sarah was home early from school and she and I made dinner together

She is a lot of fun in the kitchen! And amazingly helpful!

The day continued on in a good way, it ended in a good way....

And today started early, 4:00am with brownie crumbs all over the carpet

but things were okay..... just doing the things we need to do in the morning to get everyone off to work and school

and things continued to be doing fine, until he snapped!

Something out his DS and internet, and blah blah blah.. not sure and then the throwing began

and more throwing of objects at me, and the computer (which BTW seems to be having trouble now, not the one I'm currently using- but my computer- ugh!)

more objects to throw, him laying in "fight position" me reminding him of our lovely talk we had yesterday regarding his question "why do you have to pin me down?"

that's what he calls restraint, which I reminded him it's when his body is out of control and he is either going to hurt himself, or one of us, or he is going to be destroying our property!

It was a nice conversation and I was able to remind him, since he was in such a nice calm state, that we wouldn't have to do that if he stayed in control of himself and his behavior and when asked to go to the hammock or dog bed to "calm down" and he followed through with the request- then he doesn't need restraint....

I hate restraint.... he's getting so big that it's so hard, and really you're supposed to have 2 people - but I"m home alone so what option.

Yep, locked myself in rooms many times, yep, called Brian home because I couldn't gain control of him, and yep every avenue possible is explored in a blink of an eye and the quick check of the situation and what's the best scenario for me to be safe and for him to be safe......... I'm almost certain most other people have no idea what this is like.

What it's like to have a child who can rage and become so aggressive and destructive...... usually in a blink of an eye!

To say it's hard and sucks, just doesn't even come close!

And yet, underneath all of that is this most amazing intelligent gifted, boy

who we love and adore, but those behaviors are hard to deal with!

So, back to today after a wonderful yesterday........ yep, objects, kicking, and me trying to gain control of him to stop further behavior

Yes, ultimately things calm down, ultimately he's remorseful, ultimately he just fell asleep!

But I have to admit, after something like this, I"m mad!

'm frustrated, I'm sent right back into a bad place because I almost feel tricked!

He's in a good place today, why is he doing this?

Why did he flip, and there was no indication, no subtle hints to say "he's off a bit"

nothing...... and I guess the no warning is hard for me.... it catches me off guard, and I like to let my guard down!

Living with my guard up is awful, not natural, and exhausting........ and it's not good for me or anyone else in my family!

but I have to admit, it makes getting through a situation like the one that came up this morning, easier (if I can even say easier!)

I think it has to do with the jump in emotion, jump into a mode that is a bit like survival myself.... do what I need to to protect myself, my son, our belongings, (which is so not that important but at the same time it escalates behaviors if we don't try to eliminate property destruction..... )

bottom line.... I hate it, I hate when behaviors over take him, I hate that he struggles so much and I can't do a damn thing about it 98% of the time... why was he mad?

I don't know....

and nothing is ever worth the reaction that he has!

But it's over, I will let it go

I will continue on with the day as if it didn't happen, we will bake some bread today, we will play games, we will interact and laugh today!

We will move to the next moments and not look back

we will do out best to enjoy the rest of our day, together!

Because, it was just one moment out of many many....

and I will do my best to not let it distract me from enjoying the good moments with my little guy!

He slept!

My little guy slept until 6:40AM today.....

It has been well over a month since the last time he slept past 5am... and his usual is between 3am and 4am.....

Wow, it's so nice waking up in the morning and realizing, did he get up last night?

What was different, what helped him?

That will remain one of life's little mysteries

We have no idea and we stopped trying a long time ago to try and re-play for a repeat!

Doesn't happen....... it's just one night of sleep, that we take as a good moment!

Woo hoo!

And today we have rain, no behaviorists, and we will see what the rest of the day has in store for us.

But at least he slept!

I'm optimistic!

It's Monday once again... boy these weeks fly by fast!

With today came the first time in 3 or 4 weeks that Ty and I HAD to leave our bubble...

We needed to pick up Sarah from school (her ride was sick today...)

I was fortunate to have A the behaviorist with us for pick up- so Ty and her stayed in the car and played Pokemon cards while I went to get Sarah.

It was a great distraction, and was a huge huge help!

He did very well transitioning to the car, for the car trip -all of 1/4 mile...

believe me sometimes that can be the longest 1/4 mile ever.... literally I've had to stop 3 x on that route due to behavior..

so I don't take this positive experience for granted!

So pick up, trip back home, transitioning to a new activity were all successful! That's a big deal in my book!

I was very proud of him-

and I just hope between that little outing, no behaviorists T, W, or Th due to schedule issues- and Sarah on early out schedule all week....

That we continue this path of success, path of coping, path of continued calm nervous system........ I so want to be optimistic, I want to be so confident that these events are now much easier for him to tolerate (and yes it is all about him tolerating these events.... that's about as good as these things can be)

So despite our history on these types of events, I'm going to be optimistic and believe that these "typical setting events" will not be events that turn his ability to cope and deal with the world....into events that once again begin us down a path of dysregulation, inability to cope, intolerant, inflexible and an anxious ball of nerves that spins out of control! I"m hopeful! I"m optimistic! I know we can get through this week- without too much "incident".......

we can do this!!! We will get through these changes in routine this week!

He will be successful! I just know it!

Just what he needed.......

A very fun Saturday for me and the girls.

Lunch with my mom, who we rarely see and don't even ask me the last time I had lunch with her....

maybe when I was in college- some 20 years ago or so?? A long time ago :)

Then off to little cousins 4th birthday party- which my girls think is great because they are the "big kids"....

then back to the birthday boy's house for a little playtime....

Megan laughing and giggling that all these "little kids" want her attention so bad and she's loving every minute of it.

Sarah too is one of the big kids.. which almost never happens!

She just loves playing with her sweetest baby cousin, and it seems pretty mutual! :)

We stayed longer then I planned, and it was honestly so nice to just 'go with it' because that's just not the way our life rolls... it has to be rigid and it has to be as predictable as possible... and I did check in to make sure Ty wasn't sitting and waiting for me as he many times does...... that's hard to watch.

I may only be gone for 2 hours and he is there, sitting on the front porch just waiting for me.. which means it's cause a lot of anxiety for him

But things were fine at home, and I knew based on having a glass of orange juice thrown at me this morning,

he needed a very very very calm house today-

pretty much still recovering from the changes in routine that started on Wednesday.. and wasn't going very well

so these are the times that we know, minimize the number of people in the house, minimize external stimuli in his environment, lots of very good purposeful calming activities....

this is our recipe to help him

So the girls and I were gone almost all day... which I cannot honestly tell you the last time I was out of the house for that long... probably another cousins birthday party back in the spring?

It's been awhile.... and the girls were having a ball playing with all these "little kids", being playful, silly, and just having fun!

It was nice to see them having such a great time, and I had such a fun day with them, starting with lunch!

And when we came home, we were greeted with smiles, and the transition went pretty smooth!

Yep, us being out of the house all day, he getting one on one time with daddy....

Just what he needed..... and it has led us into a pretty good Sunday.

Which hopefully starts us on the right foot for the start of this week-

which has a change in school schedule for Sarah....

But hopefully we've filled his Calm tank up to allow some depletion without too much incident!

I hope! :)

They had fun.......

wow, wow,,,,,, wow!!

My kids never cease to amaze me..... and it wasn't just one, it was 2 that are the least likely to participate TOGETHER!

Ty just simply asked Megan if she wanted to play basketball... (it's an indoor hoop that hangs on the back of a door)

Now, Ty loves sports- all sports. Megan, well not so much.

In fact, if involves moving, she's even less likely to do it- she is hard to get active

And to then play with her brother- well this is just like winning the lottery!

So she agreed..... I think his face lite up like a xmas tree...... he loves to engage with her- she doesn't

And for reasons that are years in the making, Ty has always struggled to PLAY and has such a high need to control those that he plays with

and let's just say, it almost always never ends well

But last night, those two were having so much fun together. Megan was smiling and giggling- and actually playing

Ty was giggling and having so much fun- they were having so much fun!

I honestly couldn't believe my eyes and ears . And especially, for them to play something physical together- well, like I said, Megan NEVER wants to!

They are ok at times to do something on the computer side by side... that's pretty much how their interactions go, and occasionally they'll agree on a show to watch

/

This awesome basketball playing fun went on for about 15 minutes..... Sarah was cheering them on- there was laughter

there was silliness

and for me and Brian- there was an amazing moment for us as parents.

I have never been prouder of my three kids....... and especially of Megan and Ty........ some how, some way they figured things out!

And they had fun!

The slide, but it is just one moment

Well, I would hate to say that I could have predicted events from the past few days.... it would seem like I would always be setting a negative tone...

But ultimately I think too many changes in schedules and routines on Wednesday caught up to Ty's inability to control HIS WORLD!

And for the first time in many weeks..... I love being able to say MANY

he needed minor restraint right at bedtime- he was obviously tired, but started in with aggressive behavior and wasn't staying in control of himself....

I hate seeing him suffer this way...

I know that Wednesday was a challenge to his system, a challenge to his ability to regulate, a challenge to his world....

And yet there isn't anything we can do to prevent things like that from occurring.... IT'S CALLED LIFE

Could it have been worse, sure, and it has, a lot worse, but it's hard to realize the regression that happens, from what seems like the tiniest of things to the rest of us- but to Ty

it literally rocks his world, and not in a good way :(

So what will the next few weeks bring.... we have lots of changes in routine, school times changing for conference week, then it's Thanksgiving break, then Megan's birthday, and this is all before we hit December!

Well, I'm tired of thinking about it... or really, I don't want to think about it... I know we'll have moments,

both good and challenging

so for right now, I"m going to focus on getting things in a better place this weekend- lots of good calming activities, minimal routine changes (other then it's the weekend- )

and we'll just simply take one moment at a time- and do our best to stay calm in the meantime.......

too many changes......

How do your kids handle schedule changes, changes in routine, changes weather, changes in time, changes in other peoples schedules, changes in siblings schedules, changes in pretty much anything.

And pretty much, the one thing that is constant, CHANGE!!!!!

We have started to experience our little leaks in our bubble world... which of course is bound to happen- I mean really, how on earth can we absolutely keep things "one way" .....

well, as much as we try, we can't...... but unlike most other human beings, it does cause great distress in my son!

And distress in him, is equal to dysregulation, behaviors, inability to cope, struggles- outbursts, meltdowns, verbal aggression.... a completely disorganized little boy who is suffering.

And I hate that I can't control the universe to allow him to be the little boy he can be-

But as good of a run as we've had- which has been absolutely amazing...

When I say amazing- I mean..... we have seen our little boy be so happy and engaging.... calm,regulated, excited, a pure joy!

Now, don't get me wrong... behaviors occur, outbursts are still an everyday occurrence, verbal aggression still happens....

But the big difference is- we are able to parent him!

Parenting to his needs. We have had so many periods of time where things were so absolutely difficult, behaviors so out of control, nothing any of us did was helpful or successful: it was all about 'MANAGING' his behaviors to keep him safe and everyone else safe... he's like a spinning top- spiraling out of control... IT IS THE WORST TIMES IN OUR WORLD... IT'S SO DIFFICULT TO WATCH AND FEEL SO HELPLESS!

These are periods of time we cannot parent him..... it's so out of control- he's so out of control.......

But yep, the one thing that is tried and true that HELPS HIM more than any medication, more than any behavior modification, all the OT in the world....more than ANYTHING........

Closing down his world and minimizing all the external environmental stimuli.....

This is what we have known for years and years and years... and we've done what "all the experts say to do, try, etc.." and what happens.................. a chaotic disorganzied, inability to cope and deal with anything little boy! That's what happens.

So, here we are in the beginning of Fall. Weather has changed. Time has changed with the end of day light savings

Schedules are changing, meetings are occurring disrupting the usual routine,

Holidays are coming, birthdays are coming, more holiday festivities, xmas decorations, xmas lights, Santa, gifts, more changes in weather, more changes in other peoples schedule.....

How many more setting events can we throw his way!!!!

I saw a sneak peak of a change yesterday. Day was going well- but the behaviorist can a change in her schedule and was late by 2hours

Brian had a late night meeting and wasn't home until after bedtime

It was a Wednesday, which means Sarah gets home from school earlier then usual for early out day and Megan starts school later for late start day (yeah, sometimes tough to keep up with all the school changes :) )

And for the first day in quite a while, he got upset over me telling Sarah it was time to go inside..... Sarah and Ty had been playing so sweetly in the leaves- throwing them, jumping in them, racking them up... I love seeing that interaction.....

But this is something that he struggles with - transitions, whether it's Sarah deciding she wants to stop playing, or me saying it's time to stop the activity and move on... to blah blah.. whatever it is.... this is still a very challenging task for him- and usually ends in some verbal words that require him to "take a minute"..... but this time, he got angry at me...

and decided to pick up a stick and swing it at me... do I think he really wanted to hit me?

No..... it's his threat that he tries to use to control the situation... because ultimately it's all about control and him trying to control his world

But unfortunately compared to how things had been going- he didn't back down, he continued, and further aggressed.

Okay, he just stepped into new territory- territory we haven't been in for several weeks now... territory that starts to remind me of what our life is really like- and essentially we cannot control the universe.... to help him!

Luckily it ended okay, and ultimately he spent time in the hammock, and ultimately him wanting my attention became a bigger incentive than continuing on with the behavior....

But it is a reminder of how quickly these setting events, other peoples schedule changes, a simple late night meeting that daddy has....... really really affects him- and causes him to struggle....

Now, he recovered from it more quickly- thank goodness- that's one thing that is definitely a positive even when there is a behavior... his ability to recover is improved right now... but

we have another schedule change for today with the behaviorist, next week is a complete change in schedule for Sarah, then it's Thanksgiving break, then Megan's birthday, then December, then Christmas thoughts, ideas, activities (within our home of course, because I think you can tell going out doesn't happen :0.......)

More big changes in schedules, Brian is home for 2 weeks, behaviorists have schedule changes, girls are off for holiday, Lights, gifts, excitement, anticipation, and just after the first of the year... Brian is schedule for his surgery!

So, how many changes can happen and be thrown our way..... we will continue to do the best we can.... we will continue to help Ty through all these "changes"

and I just pray that we as a team are able to help him continue this streak of happiness, of smiles, of a playful little guy.....

Trust me, even on the best of days there are "things" that cause challenges.....heck, we aren't able to leave the house as a family- we aren't able to leave the house with him, one of us always always has to be home with him..... it's challenging to us as parents...

It's a very difficult balancing act... as if parenting isn't already a challenging balancing act... but imagine trying to do it and not ever being able to leave your house.... or knowing if we do........ what will most likely happen!

Yeah, it sucks...... and yet when it's the only thing we know we can do to truly help our son, it's easy at the same time..... but seriously, enough with the changes occurring... please universe stay in one place for my son!!!!! :)

Uninterrupted sleep please!

Things back to the old routine.

Girls back in school, Brian back at work, me and Ty home, behaviorists coming over as usual. Back to a regular predictable schedule.

Back to a quiet house for a few hours. Back to a focused day of meaning, purposeful, helpful activities with my little guy.

And even though it was a long weekend, full of changes in routine, full of unpredictability, a little more chaos moving about the house

it was indeed a pretty nice long weekend!

Ty and Sarah were really into playing together- and did a great job. Ty loves teaching her all about football, and she's a willing participant.

But even with things rolling along, I cannot for the life of me figure out why he is waking up so much at night.

He's regularly waking up at 2am all last week- he gets up, fixes a bowl of oatmeal, watches a little video, and then heads back to bed. Now, this is better then it used to be.

At least he isn't waking me up, or the rest of the house. We have definitely had the periods of time of this night waking and him thinking it's party time... and causing chaos and purposely waking everyone up..... that was not a fun time :(

This, well, he wakes up, (Brian helps him because it's dark and Ty won't walk into a room that is dark- so Brian turns lights on for him and gets him set up. And then goes back to bed

So the last several weeks it's been 2am, even some days at 1:00am or 1:30am- ugh

This morning Ty gets out of bed at 8am and tells me "well I got up at 4:00am- that's better then 1, 2 or 3am, right?"

well, um sure, I guess 4 is better then 1, 2 or 3am.....

But when I think back to when he was much younger- before we even had any diagnoses, when he was just a little guy, 2 and 3....... what did he always do?

He ALWAYS woke up around 2 or 3am...... crying, screaming..... and then would continue to cry for the next several hours,

This was every night.... it was so tough, and we got so little sleep- Brian went and slept in his "dedicated" room, and Ty slept in our bed with me

Brian had to go to work.... it was so hard sleeping so little, night after night after night- for years.... talk about feeling like you're going crazy- not sleeping - does that!

Ty would just cry and be inconsolable for 3-4 hours every night- the only thing that would ultimately help was me bouncing him vigorously on the big yoga ball.....but even that wasn't always effective, but the only thing that would some what soothe him.

Not exactly what I wanted to be doing at 3am- bouncing on a big yoga ball for an hour while holding my toddler.... and still being up for 3 or 4 hours every night-

oh and then having to get up to get Megan off to school.

Those were really tough times and really tough nights.

But that is what is so puzzling to me.... because he's done this night waking thing more years in a row then actually sleeping well. We've have good periods of time (all were before he started school)

But we have not been able to ever consistently count on sleep, consistently count on him not waking up and wandering around the house at night

and even if he's not purposely waking us up...... him wandering around the house, fixing himself food, well it's not a time I can easily just fall back asleep, until I hear him crawl back into bed with Brian.... and so I"ve lost that sleep too.

It's funny, Brian can sleep right through it all.... but I can't... I think it's back to that whole mommy / daddy thing when you have a baby... and how mommy's can't just ignore different cues the baby gives.. heck I can't ignore cue's other babies give... it's such a maternal instinct to help a baby.... soothe a baby, comfort a baby... where as for dad's, well it's just different and I don't think anyone will argue with that!

So this whole night waking, not sleeping through the night, waking up and eating something- then about an hour later returning to bed is puzzling me....

and even with reinforcements, even the rare one time he doesn't wake up and sleeps all night, well...... never consistent.

the only thing that is consistent these days is his night waking.... and whether it's 2, 3, or 4am...... it just happens.

And it's happened more times then not throughout his entire life.....

But with the days we've been having, with him waking up and not waking everyone else up, what are we to do?

It just is, what it is..... and whatever the cause is, it is stronger then any reward, incentive, threat, plea, that we may do.....

It is what it is.....and pretty much there isn't a damn thing we can do about it!

It's just like the picture I have posted above on this blog.... Autism sleeps, just not where or when we want..... that is so true...

He naps more often then not.... regardless of the situation.... sleep just over takes his body at some point.. and that's it.. he's asleep..Very much like a newborn- where boom- they're out like a light

We just have to nurture it, accept it, and allow it to occur..... he's a kid, a growing, developing, little boy that needs sleep....... so when it happens, we just let it happen.

But seriously, it would be nice to have at least a few nights in a row of uninterrupted sleep..... just a few.... we don't have a high bar of what we expect.... but just a few, and in a row..... please!!!

Nothing more to say.........

two hours to myself.....

Yep, I got two whole hours to myself this friday morning.

No kids,

no chores,

oh but one thing: I was at the dentist!

Funny how something like that can seem so wonderful-

heck I almost fell asleep in the chair!

And I love when they ask " how are things? Have fun plans for the weekend?

I feel bad for lying- so I don't

so I"m never quite sure how to answer these vague questions of life.

It's polite chat, it's short talk... you know we all do it

but I've realized it's harder and harder for me- I just have no answer.

And then if you do just say something little, or vague back, it always comes back to

oh, what grade are your kids in?

Which okay, again polite chat- I have Sarah, Megan and I again never know how to answer for Ty.

Heck, people will occasionally ask him (neighbors, anyone walking a dog in the neighborhood) what grade he's in and he looks stunned, not sure how to answer to.

I guess as a society we define kids by their grade and even if you give an age, they always come back and say, oh is he in 3rd grade?

Again, circled back to school.

And don't get me wrong- polite chat is nice, quick hellos how are ya's, it's how our society works- we see people at the store, hi how are you?

You see people at school drop offs, at the park, anywhere around town.

But I guess this is where my world has almost squashed my social skills- trained my social energy, and always gives me pause to decide how to proceed with the conversation.

What grade is Ty in..... well, he did a partial year of Kindergarten when he was 5, but did finish out the year (with lots and lots of extended breaks and no school on Wednesday - so a 4 day school week.

Then he started the second year of kindergarten at age 6 and it lasted 2 1/2 months before it was necessary to pull him out and I began homeschooling through our school district (independent study).

That was still pretty much not successful- the home part was fine-

it was the once a week going to meet with the teacher for just one hour that was the struggle and part that caused major problems.

Yep, just one hour a week...... and again it's a second year of kindergarten

but the going there, well pretty much hell.

Then forced by hand to "once again show everyone this system isn't working for him- and we were advised legally to "let him fail to show them "...

which was the hardest thing in the entire world.... literally putting him through something he physically and emotionally can't handle and we have no choice

besides, what do we know- we are only HIS PARENTS!

It seems so simple, but let me tell you the process and hell parents go through to help their kids and are consistently pushed to the side and then people who have never even met your child are giving advise and deciding what's best

Yep, that's the broken special education system

and it sucks!

Our son was actually in a really good place- he had been out of formal education for 9 months,

it was summer time,

we were able to maintain a pretty descent "bubble" although taking little one to preschool

when it was time for him to have to start school........ he was now entering the first grade

It was exactly this time 2 years ago in fact.....

and nothing literally killed us emotionally more then having to put him back into school for an entire full day school day, 5 days a week- to show "them" this is not the proper placement for him

I still cringe just thinking about it- he had been doing so well- for him,

behaviors had again improved,

he was more stable,

he wasn't living in fight or flight-

he was more engaging

very much like where things have been for us for the last 2 weeks

and it was literally as quick as 1 week, then 2 weeks:

it all unfolded, and it unfolded badly

he was threatening us like he had never done before, his aggression was so severe and of such serious nature

all I can say is it was already a parents worst nightmare, and let me remind you, he's 7 and in first grade

and it didn't matter what we said, because remember in the beginning, he tries so hard to hold it together- to just physically exist in that school space- that he's just a physical body

was he learning- no

was he engaging- no

were the problems that were completely dismissed- yep!

anyway- it got bad very quick and we had to let it "keep happening"

He wasn't eating (he lost 4 lbs in just 2 1/2 mo), he wasn't sleeping (and I mean literally), he wasn't playing, he wasn't a little boy

He didn't smile- his spirit was completely lost

So fast forward finally one of the last "episodes" that occurred- and by this time we had our behaviorists on board documenting all things!

it was first week of March- he had lasted 3 months this time

but the last episode was so bad, we either had to take him out or

he'll have to be hospitalized

that's how bad things were

bad doesn't even describe the hell he was going through and the hell our family was going through

Fast forward we are now two years from that point of "throwing" him back into the school environment (and yes he had every support the school district offers- just cause they have services, if they are not the right services, what good does it do?

So, two years ago, we descended into a hell that we never knew even existed

and it's taken a lot

a lot of love, patience, tears, the right professional people helping support him and our family

and again, "closing his world down to bare essentials"

And I can tell you after that experience, we see his spirit, we see him smile, he's stable medically, he's grown, he's learning, he's engaging, he's so smart, he's funny, he's sleeping (well usually, just inconvenient times during the day :), he's full of life and spirited emotions

He's our son- and the good part is "we have him back"

The boy we know is in there, but just struggles so much

but he lives in our house, we take care of him, we love him, we are a family unit, and as tough as some of our days and weeks are and can be

He is our son and part of our family.

So, I don't really care what grade he's in, I don't care how people judge our circumstances, I don't care if others don't understand

So, not that I am grumpy to have social chit chat, polite chat-

it's just hard because it's so hard to even just say "he is homeschool-ed" because that alone gets people asking more questions, that lead to more uncomfortable chit chat that continues and then the "wow you and your husband are so amazing,"

and then the added "I don't think I could do that"

Trust me, you become the parent your child needs you to be

so no, we aren't amazing

we are parents-

and just trying the best we can!

See this is what happens when I do get two hours to myself.

I start thinking, and realizing this is an entire world outside of "our world" and I'm not sure how to fit in myself these days....

It's easier to stay home and watch my son do something new, try a new recipe, read a loud some sports statistics that gets him excited, play with his sister,

because these are all amazing things that we went so long without seeing....

I almost feel like it's like when you have a newborn -

where you can just watch them and you are amazed at all the cute little things they do and noises they make..

when I think back to 2 years ago and what became of that time- we almost completely lost our son-

That was hard.....

So, my bubble world is zipped back up and he is right now happily playing indoor basketball.... laughing!

True confessions.........

So, a bit of an off week.

We are all feeling a little under the weather with this darn chest cold. But it is what it is.

Yesterday was a bit of a "test" day for Ty.

As things have been going so well "for us"- but within this tight controlled environment

Until yesterday. Brian stayed home from work, change 1.

I took Sarah to school- change 2

Megan stayed home from school not feeling well- change 3

It's Wednesday, which means Sarah comes home from school earlier for early out day- change 4

I took full advantage of my hubby being home and went and ran errands and had lunch with my friend- change 5

I think you're getting the picture....

And with all this, ultimately Ty needed physical restraint due to aggressive behaviors. :(

First time in weeks ( I think, at least to this level)....

and just like a little toddler, he had the behavior, and after we physically had to take control of him- he fell asleep!

Yep, asleep..... he didn't fight the restraint (as he usually does)... and as he lay there on the carpet of our TV room, his eyes slowly begin to close...

But, I"m physically restraining him... AND HE'S FALLING ASLEEP!

He didn't fight it, he was obviously so tired- it's just like the toddler who acts out because they're exhausted and then CRASH! fast asleep

So he slept- which was good!

So here is my true confessions....... ugh-

basically he didn't handle the day very well- he hadn't hit me like that in several weeks- and really the behaviors were just all over the place-

he was trying really hard to "control" his world, trying really hard to "organize"

but struggled greatly!

Were these things so significant to cause regression...... well in the world the rest of us live in-ABSOLUTELY NOT!

but to him........ it's everything!

The teeny tiniest of things cause these over reactions- which for him typically mean aggressive behaviors

And in reality- it was really nothing- except 5 different changes for him-

So where does this leave us... well this morning he wanted me to 'LOOK UP A LEGO SET'

NOOOOOOOO!!!!

This is not a good sign.. and when I simply ignore the request- he ultimately threw a cup of water at me...

it ended there, which is great

but the fact that his mind is going somewhere which we consider dangerous territory,

an area that begins to take it's hold and manifest behaviors

an area that without a doubt 100% of the time results in out of control behaviors, the sole reason for aggressive behaviors-

and it's simply because he's trying to gain CONTROL of his world.... and for some unknown reason this is where his head goes :BUYING SOMETHING...... I"ve mentioned before

we absolutely have to run the other direction when we hear him say "buy me something from Target".....................ugh-

That by far is the worst words we can hear him say to us because it simply means-

watch out

I'm totally out of control and can't stop myself-

So true confession time:

this is his reaction to very small little changes (as we see them)

he has been in a good place, and I really thought he would have handled all these things better

but between now and the first part of 2014...... I have 2 words

setting events

These are things that are likely to cause an uproar to Ty and his ability to cope and not have problematic behaviors, aggression, etc

We'll start with tomorrow: Sarah has teacher work day- so no school.

Monday, holiday for all

Then it's teacher conference week so early release every day

our behaviorists have to change the schedule because they are taking part in a special training to help protect themselves and be certified to deal with physical behaviors - it's a training specific for my son's case

then it's the Thanksgiving Break for the entire week

Megan's birthday

December: Christmas time: Christmas decorations: Christmas lights and decorations: (can you say sensory system overload:

and I try to tone it down: but the tree alone-

WOW- if you have an over reactive system

Some school events that have been packed in right before xmas break

Brian has several late night work meetings

Xmas break for the girls and Brian

Our awesome behaviorist is taking those last 2 weeks of December off- so she won't be here

And here's our ticker: I've mentioned before my husband is donating a kidney to his older sister.

And it's almost time

We're looking possibly sometime in December before xmas- or just after the new years

And it truly is the most amazing thing - incredible he was a perfect match

and true confessions: how are we going to manage?

Ty couldn't even handle these small changes of yesterday

how the hell is he going to handle Brian gone, in the hospital for at least a few days-

I'll have to figure out some how to get Sarah to school- solo parent with these major changes

Oh, and yes I would love to try and spend some time with my husband and support him while he's in the hospital donating a kidney.... that little thing- you know, the person I love and want to support and be there by his side

how the hell am I going to be able to do that.... I have Ty, I don't leave the house, unless Brian is here with him- we have no one to take care of him- no one who is able to take care of him (we had to stop having babysitters come - it's wasn't a good situation any longer)

And even when Brian is out of the hospital and home recovering

we are looking at probably 6 weeks recovery off from work

me taking care of him as he's recovering

me responsible by myself for Ty and the girls

meals, the house, the dogs, errands, the store, dishes, laundry

yes, most of this seems like no big deal- I"m a mom, I of course wear many many many hats

but the problem is- I have a child who becomes so aggressive and dysregulated and developmentally requires a lot, including medical bowel irrigation every night

how will this all happen?

How on earth will I be able to even manage some of this- when even on the best of our days

he requires a lot!

Heck, he needs Brian so much, and Brian won't be available

and not just for one day, for weeks and weeks

How will this happen- when we have so many setting events coming up

these are things that are completely out of our control

Our controlled bubble environment that helps our son so much- helps him in ways that are absolutely incredible to see

and the bubble is about to have lots of holes

and his controlled environment will leak and leak without much pause

And if yesterday was any indication: of his lack of ability to cope with the slightest of changes in routine:

is it okay if I say "we are screwed!

IT honestly frightens me to think of- because my husband and I have been such an awesome team: but there is no way either one of us could do this with out the other

we each have our roles

and our roles play a critical part in all of our children's lives

despite all the things we go through with our son

we have 2 daughters- who also need us, want us, and deserve to have our attention and focus too

so true confessions: I have no idea how on earth we are going to get through these next few months

I'm scared

I'm worried

I'm strong and I know we will ultimately end up on the other end of all this

but at what price

It will be so incredibly hard and challenging to be a good supportive wife while my husband is going through this very major thing and recovery

It will be so incredibly hard and challenging to be the mom I need to be for my children

It will be so incredibly hard and challenging to be the person I know I am

And just when we think we've been "challenged" in life..... we have this new curve ball as they say

Well, I guess God really thinks highly of us- right!

Or, maybe he forgot that we called Uncle a long long time ago....... because seriously

I certainly hope he's sending us down some Angels to help us and perform some miracles during this time.... do you hear that God?? Come one now, extra strength, extra miracles, extra anything - Alright.... !

For my family, please!

He slept.......

Although my little guy has not been feeling well with a bad cold, asthma flare up......

although I've caught the cold now and feel worn out....

are your ready for this......

HE SLEPT ALL NIGHT!!!!

The nights since Friday have been tough, he's waking up every 3 hours coughing like crazy, waking up and having a hard time going back to sleep

It's been a pretty rough few nights- and just when we think our sleep situation can't get worse

and we are feeling TIRED!

He once again surprises us with sleeping through the night!

I don't even remember the last time he slept through the night without waking,

without needing something to eat,

without watching a video,

without having such a hard time going back to sleep

And you don't even realize how much we wake up every night until.....

you don't wake up! WOW!

Now, I'm happy because:

it meant he wasn't up all night coughing which is good

but I think the only reason he slept was

because he is sick with a cold

which means it's pretty much not gonna happen again.

This is the weird thing we've always experienced with him

When he's sick, something happens to him

he's always calmer,

he tends to sleep,

he tends to be more engaging,

he tends to be, well more of himself that we know is there,

just so much gets in his way

so it's kind of this weird thing and not that we are ever happy he gets sick- trust me, he's not the easiest patient

but it does give us a bit of rest from our more typical days where he is just needing so much from us all day

we are working on independence, but even on the best of days, he's a very needy kid,

and struggles a lot with basic skills,

and even just existing without our presence

It's always a work in progress,

that's why he falls asleep usually at my feet when he naps, or needs our attention to accomplish things

it's probably a lot due to trying to self regulate, but needing us to co-regulate

but when we have days as we've been having (even before he wasn't feeling well)

well, we don't mind.... it's baby steps, it's tiny steps forward, tiny steps back,

and when we see him smiling and more full of life

it's all worth it!

and then he sleeps....well, that's just icing on the gluten free dairy free cake! :)

Sick sleep picture of the day :(

Poor guy is fighting a bad chest cold and having problems with his asthma....

he's up a lot at night- but at least he's getting some sleep during the day.... and I guess it's sad,

but not feeling quite well certainly calms one's body down-

yes that's sad- but we always know

not feeling good= calm Ty

A little rest time for all of us!

My football historian.....

It's Sunday.

That means, football Sunday.

That means Brian and Ty will be watching football, playing football, hanging out with football on the TV.

This is a good thing.

This makes Ty happy.

This makes Brian happy.

Ty has become quite a little football historian. He right now is watching about the 1982 Super Bowl game of 49ers vs Bengals.

I think it's super bowl 16?

He's so excited to talk the old plays, the history making plays, to talk about the old greats in NFL.

He loves being to talk to daddy about all of this.

This is a good passion. It's not just football- it's learning about things from the past.

It's connecting Ty and Brian to things that not just Ty enjoys- but Brian too.

And Ty knows that! That's what makes this even more awesome.

After all, connecting to people isn't his strong point- this is where Autism usually interferes.

He likes to connect to animals.

But he is trying, and I love that they can connect over football.

This is great!

Ty and I connect over baking and building things.

These connections are wonderful. These connections are critical.

These connections kick Autism in the butt......

and I'm proud of Ty for working so hard to make these connections.

And I"m proud of us as his parents for fueling these connections- we are an awesome team and I knew that before we got married......

Let's get this Sunday of Football started!

I have never said this before.......

What a fantastic Halloween we had.

Never before have I ever said these words, ever!

He did it. He had fun. He definitely struggled, but he did it!

My little cheerleader and K-9 unit Police officer came back after trick or treating and even traded candy- without problems!

Then it continued into yesterday evening- Ty had been waiting to trade with Megan. (She was off with friends on Halloween)

I had a moment yesterday afternoon, where all three of them sat in the living room, trading candy, no complaining, no crying, no hitting,

nothing- just sitting around trading candy.

It was truly a moment that is put into my memory vault. All 3 of them sitting together (first of all this is huge in itself)

then trying to negotiate the world of candy trading- wow!!!

I'm just so proud of all three of them.

The girls are being patient with Ty, especially Megan and he's trying so hard.

He's able to try hard, he's able to deal with certain situations right now. Even disappointment with the candy trading-

I mean really the minute big sister gets in there, she likes to drive a hard bargain.

But Ty too took total advantage of Sarah- that's kind of how it goes with big brothers and sisters-

I remember!

Now we are into November- Halloween is past us- and I will smile every time I think of this years Halloween.

And if anyone ever wondered how we can possibly "live this way" closed up in our bubble....

Well, now you know. And days like this make it easy!

It brings our family together! It helps us be a family!

From only 1 1/2 years ago at the age of 7 his anger, aggression, chaotic behavior was so much that we had the realization that we might not be able to bring him home after one of the last episodes of rage. There is nothing that can make you feel worse as a parent.

But we were talking safety for everyone!

His behavior at the time was a symptom- when he has behaviors it's a symptom.

A symptom of a body that cannot get control of itself, a mind that cannot get organized- absolute dysregulation and it's like it's just spinning and spinning- out of control.

But he is still just a little boy...... he's our little boy.

And this is what his external world needs to be like so that he can be a little boy.

This makes me feel good as a parent- and honestly some days I feel like Super Mom because I know most people could not do what we do.

It's hard for sure, beyond what most people can imagine:

but at the same time- it's absolutely incredible to see the little boy that is thriving, growing, developing, and best of all

HAPPY!