A look into a special needs mom's everyday life of raising 3 kids- when one of them won't (can't) leave the house. - This blog was started 15 years ago. It is a window into our world and our journey to supporting our son. Who now has the capacity to not only leave our house (on his terms) but to engage in many other activities of life with joy! This is a story about hope!
Monday, March 31, 2014
This is my story, and I"m stickin' to it......
Nope, that's not it at all.
But as last week with spring break, I saw glimpse's of him like I haven't seen in a long time.
He's been really angry and aggressive kind of since Brian went back to work after his surgery, after Ty's own procedure, and the behaviorists started back in full time.
And they were Uping the challenges big time.
How do you balance having a happy little boy, whose engaging, playful and doing a pretty good job using his coping skills which is our biggest challenge of all
and the call to continue to challenge him to learn new skills, but at the cost of him again being aggressive, angry, and absolutely defiant!!
It certainly makes things very very hard within our family and our household!
The simplest little things were setting him off into full explosions- he was being completely inflexible, completely irrational and completely unpredictable!
It's hard, we know it's hard, we know hard- trust me!
But we also know who is hiding deep inside his soul, who wants to please, wants to play, wants to be happy!
And so, call me bad mommy, but I wanted to have some time with him, just him, to engage in activities, to enjoy each others company, to simply talk with him.
There's nothing wrong with that, right??? ;)
And this is how our day went!
I took a shower- (okay that's just huge in itself because he wasn't asleep, he just calmly played xbox in my room while I showered- yeah!
Then a did a few chores and he patiently waited till I was ready and we went outside to play basketball before it started to rain!
That was fun, and we laughed and were silly together! Doesn't get better than that!
Then we came inside, and it was lunch time so he suggested we look up some fun lunch ideas! Leave it to pinterest to give us some awesome ideas!
We named this lunch, Squid dogs..... hot dogs cut into 3 or 4 pieces, and then we took spaghetti (uncooked) and poked it into the hot dog- then cooked the entire thing- and it looked like squids... how cool is that- he loved it!
Photo to come later.....
Then I did some more chores, he occupied himself- (holy crap- how cool is that!!)
Then he wanted to make Rice crispie treats- gluten free of course- so I just set him up and he did it!
I knew he could, he's done it before, so I allowed him to melt the butter on the stove and the marshmellows- he just occasionally checked in with me, asked me "if this is good"
He was doing it perfectly- and then voila- my little boy made yummy treats.... and even better-
When his sisters got home from school, he willingly offered them some! Yeah again!
I should be counting how many times I say yeah for this day, .... it's so great!
And although it was very very hard for him to wait patiently for daddy to come home (which he came home about 30 minutes late today- so that kind of drove Ty nuts and he just sort of paced around, walking literally in circles saying "when will he be home" over and over
But that's not that unusual for him, but what is is nothing more then that... simply just waiting the best he could, and no behaviors of anxiety!
So, as I look back on my "hooky" day, but not really because honestly he had a cold last week, we all did, and he still has you know, gunk to clear out, and we certainly don't want to get others sick with our germs and I'm going to stick to this story because at the end of this day (almost) I'm just looking back and smiling and so happy I had a great day with my little boy! And to see his face smile and laugh as much as it did today, well,I"m sorry that is truly a beautiful sight
Now, we still have "potty" time, but you know what, even if that goes bad,
it can't erase my happiness from today - nothing can!
And I'm so incredibly proud of him, and how hard he works at every single thing in his life- He truly is our special little boy who continues to amaze us!
to inspire us, and has taught me so much about life and myself-
And I know tomorrow will be a new day, with new challenges, but this is why we enjoy our beautiful moments!
Saturday, March 29, 2014
another photo of these two
once upon a time, they really did enjoy each other and played and laughed and shared some amazing moments!
oh brotherly love......
but none the less- frustrating.
Ty and Megan for the life of me couldn't get along- constant bickering, constant annoying, constant not properly communicating and driving each other absolutely bonkers
therefore driving their parents absolutely bonkers
but after we each made our own pizzas, and enjoyed them for dinner-
Ty quietly disappeared into the kitchen and came back with a bowl of ice cream for Megan and a bowl of ice cream for daddy (plus the special piece of pie we bought for dad just because we know he likes them from the bakery).....
How sweet was that!
Especially because he got it for Megan in addition to daddy... that came straight from his heart!
Love that.
Friday, March 28, 2014
Cutest ever
Especially on this good, then rough, then good, then really bad, then okay, then oh hell, I"ve lost track kind of day!
Tomorrow is a new day:)
This is just the beginning
Or if I'm more sad because it's now Friday, last day of spring break, the week has moved on- but it's been a little tougher than I anticipated!
Tuesday was good... but it seemed to just spiral down hill from there- maybe the rain, so not being outdoors in the fresh air, being active, getting all that extra excited don't know what to do with energy out
Or just change in schedule
but definitely tougher.
And as I think more and more of what needs to be done before going to CCI, and reading through the HUGE packet of information I'm asked to read prior to going, and seeing all the challenges that Ty will experience, what our family will experience- and no longer in the privacy of our home or at the beach where we still have a private area
I am just praying that Ty can some how some way step up (as if it's a choice he has, but I"m dreaming here) and the dog, his dog, his new skilled companion dog will be such an incredible benefit to him
Because he is going to be challenged like he hasn't been in a very long time. I don't think it will be as bad as his school experiences, we'll be there to recognize when he needs a break, there will be a dog, there will be a dog, lots of dogs... did I mention, there will be dogs all around him!!
It will be hard, it will be worth it, I just hope we can all come together, get through this exciting new challenge, and then we cam come home and begin again.
But after this week of spring break, and time keeps quickly moving forward, whether we are ready for it to or not, the up and down of his mood this week, the complete breakdown turning to aggression in a blink of an eye, the constant mean words and need for attention by anyone (therefore more negative cruel words, because there is a reaction by the girls when he does that, right!) (trust me we continue to work on that- my famous words- WALK AWAY) It sounds easier than it is I guess, when you are little.
But we always promised him we would do everything we could to improve his quality of life, to help him be successful, to do what ever is necessary to achieve growth, happiness, and help him reach what his full potential is, no matter what that looks like.
And this 19 month process of ultimately being selected for him to receive a most incredible tool to help him in life, from this point forward, well, it was well worth the efforts and we're not gonna stop now!
I guess as they say, this is just the beginning!
Wednesday, March 26, 2014
oh my reality.....
Then going into the fridge to get one and holding it, touching it, realizing it's squishy, and then coming to me to ask if they need more time, "they still feel like dough"
And then the realization that these are no bake cookies therefore this is how they are, therefore, I"m mad, angry and going to slam doors and throw things because this is not what I thought I was making!!!! Yeah, that sucks!
Tuesday, March 25, 2014
Agenda from today= spring break day #2
2. Folded laundry and successfully put it all away!
3. Surprise new video for kids- "Frozen"- brings excitement and all four of us, sitting on the couch, eating popcorn, enjoying a movie TOGETHER!
Spent 1 1/2 hours TOGETHER watching a movie!
Cannot believe we all spent time, watching a video in the same room, without issues!
Oh, have I repeated myself.. I guess I"m still amazed by the entire process!
Walked 7 houses down the street to play with a neighbors puppy!
First outing the girls and Ty and I have done in, well probably 2 years or more!
And yes, this is considered an outing in my book- we left our house, we walked down the
street (successfully)that kind of never happens, at least without MAJOR issues
We go back home (Ty was about 4 minutes ahead of us- when he's done, he's done- but that's pretty cool he knew that- and it was only walking a few houses down the street- so that's safe!
The evening brought dinner and a very delicious and fun dessert treat!
I had made home made mixed berry sorbet... and a new recipe for dairy free chocolate dipping sauce with fruit!
When dad's away, we little one's like to have treats!!!
Brian has a late meeting tonight- so it's always fun to "do something out of the ordinary, as long as it doesn't cause too much problems since it's a little different than our usual routine, so it has to be within reason that I believe Ty will be able to tolerate this "change" of the evening routine!
Got it ;)
So, we absolutely enjoyed apples, grapes, raisins, pretzels dipped in yummy chocolate sauce.... so fun!
The kids and I enjoyed the treats, enjoyed the process of dipping using fun kabob sticks, and just simply enjoyed the moment!
Did I mention we enjoyed this ??? Sorry, for day two of spring break, yesterday was less than a desirable but to be expected kind of day- and today, well, just simply an enjoyed day with lots of enjoyed moments- !
And even with refusal as of 8:30pm to do his usual potty routine, ehhh
he ultimately goes on because he now is figuring out the consequences are much greater than this moment of opposition to mom and dad!
He'll go on, don't know when, and it will be about an hour on the potty before bedtime-
But with the exception of this potty time refusal, it's been quite a nice day with my little munchkins.... feels like it's been a while, so it's definitely not without a smile and memory to the vault! These are days that make me feel simply happy!
Oh and one other awesome moment from this morning- just some nice art time!gotta love art coming out so early in the morning- and full of expression, pictures, stories, and absolutely calm focused creative moment!
This is a great way to start the day and really sets a nice tone for how things MAY go!
it's been a while since art has found it's way back to Ty, and just love love love when it finds him and he runs with it!
Monday, March 24, 2014
Flash back "sleep pictures of the day"
These are flash back "sleep pictures of the day"
Funny thing, I didn't even realize my little guy had crazy sleep habits back than!
I mean, I knew he didn't sleep much, and cried much of the nights, and struggled to sleep, stay asleep, but just look how adorable he was!
In these photos he's 2 1/2... I particularly love the mouth open on the couch photo, and the one where he simply fell asleep resting is tired little head in the palm of his hands, propped up on his elbows!
Wasn't he so cute!!!!
Saturday, March 22, 2014
Quote from Ty
where I usually keep a small supply of plastic bowls, cups, plates- so that the kids can access them easily!
Ty walks in, opens the cupboard, says just out loud (not to me, just out loud)
"I'll just use a bowl, there are no cups"
Because that's how he rolls!
I guess that's a plus for problem solving, right?!!;)
Friday, March 21, 2014
two totally different planets....
End result, Megan stomping her feet going to her room, me taking Ty's basketball away and him slamming a door!
Now in all honesty, that is almost a normal kind of response from both of them! So weird to think of it that way- but it cracks me up!
But now the pisser.... Ty standing in a completely different room than where the TV is, playing basketball, Megan walks in and he states "I'm on the TV"
She says, "no you're not"
him getting huffy puffy (literally he does that, he starts breathing really heavy through his nose, puffs up his shoulders, stiffens his entire body and his eye balls start to bulge out of his head)
She then proceeds to correct him (which she is absolutely rewarded on the instruction to "walk away" those two are not capable to ever handling a situation- trust me- been there, done that... over it... However Megan does have a better skill set, therefore we expect her to use this skill to remember to not engage him and walk away!!!!!!!!
So, I calmly (well not totally calmly I was getting really irritated) told those two to simply STOP!
Then Megan (not sure what she was thinking) came over to me, whispered in my ear (yet it was not a full whisper and so a few key words were selectively heard by the other party) - she leans over and says "will you buy me Super Mario Brothers for DS"?
Now a quick background, she got busted by Ty (because she knew she wouldn't be playing his DS game when he has clearly stated do not play my Mario Brothers DS game!
And she secretly has been playing it, thinking she's being so clever, until he starts to figure it out- calls her out- (this was a few nights ago) and she is not good at lying and trying to be deceitful!
Which isn't a bad quality, don't get me wrong.
But she was looking to me to bail her out of this situation she got herself in with her brother! She knew, he had made it very clear (that's why she was hiding it and playing only when he wasn't around)
So anyway, Ty wised up and simply went over to the pink DS and pulled out the game cartridge and surprise surprise, it's his Mario Brothers. OOps!
Yes he was mad, but he actually handled it really well (for him) and luckily she was at school when it was discovered- so when she got home from school (he had calmed down by then) he literally calmly stated to her that she is not to play with his mario brothers game without asking permission. And if you ask permission I will still say no, but you need to ask!
That's pretty clear in my book!
So, back to present moment
her whispering in my ear so that he can hear "mario brothers" and pretty much that's it, sends him into a tizzy - huffing and puffing, and literally wanting so badly to knock something down or throw something!
It is just his instinct (still) unfortunately!
And as he's trying to control himself (and for him doing a better job than his usual anger moment) I swiftly send Megan off to her room- cannot believe she really thought that was a good idea at this moment when he and she were just having a difficult moment literally seconds before!
No one ever said parenting is easy, no one ever said parenting a child with special needs is easy, no one ever said hang on for the ride of your life because if you don't you will never be able to keep up with the emotional volatile craziness that we call life!
My life, my children, and I'm ready for bed!
ps did I tell you it's Spring break next week- which means we will all be home, together, trying to figure out how to do this again, and just when we will all figure it out and we begin to have some nice togetherness, it's back to school!
How do I know this?
Because this is what happens after every single break we ever have had in the history of school breaks!!
I wish I was wrong- but I do look forward to the end of the week when we all begin to figure it out!
Those are my moments!
Thursday, March 20, 2014
My first piece
This is my first official piece!
This is a rustic pub style wood table that my husband found for me.... (isn't he great)!
It used to be in a bar, and trust me was well loved with a lot of history showing all over it!!!!!
But with a solid maple tongue and groove plank boards, and solid redwood 2x4s supports... hmmm definitely potential!
Now, I did something stupid- I didn't take before photos! I know I know, everyone said I should- and I thought about it a lot, but forgot! So you'll just have to trust me when I say, it was definitely a diamond in the rough... wow!!!
But with my new sander my hubby got me for Christmas, my handy dandy putty knife (you should have seen all the gunk caked up from years of drinkers putting who knows what on it- and carvings and just lots of build up!)
It took me longer than anticipated because I didn't realize how much gunk was just stuck on it!
But ultimately- wow!
The solid maple top has a plank style with tongue and groove and I stained it in a dark walnut stain!
The rest of the table is painted using Miss Mustard Seed Milk Paint (which BTW - love love love!!!) in the color Linen and distressed.
And look at it now!!!! I want to keep it so bad- it turned out so amazing!!
But hubby said, not a good precedent to start- keeping all the pieces I love to work on!!
So, I"m selling it!
But it really turned out so beautiful, I describe it as a Rustic pub style wood table- that has a vintage farm table design (look at the support legs, notches fit together like a puzzle- tongue and groove planks on the top... this is quality!!)
Dimensions are 72' x 23' x 32 1/2' and it is HEAVY!!!!
So, feeling pretty proud of this work I've done. This is what keeps me somewhat sane during my crazy days... talk about good therapy- pick up a palm sander and go!!!!
It is something I love to do and always have- re purposing old things... and making them look beautiful, unique, and well useful again!
So I"ve now posted it for sell... and we'll see if it sells! Then my hubby said I can get another piece- to re do!
One piece in and out, then another piece in and out.... I know his system... he hates having things hang around... I like to work on many things at once... I guess I"m a little ADD like that..
Wish me luck!
Wednesday, March 19, 2014
When he was 5 years and 360 days old
It says
quote from Ty, age 6 in 5 days (it's dated ) 6/10/10
"your eyes shine like the sun"
"Your hair flows like the waves of the ocean"
"your tears sound like rain drops"
I kid you not, this was exact quote from my little boy when he wasn't even 6 years old yet (had 5 days to go!).
This is the kid who so many have just wanted to throw their hands up and say, "I don't know".
And if anyone has ever wondered why we do what we do for him- and I"m first to say it's a sacrifice, but isn't that what life is about. Making decisions- we made the decision to have children. With that comes it's own set of sacrifices compared to not having children.
And when you decide you want to have children, you want to be parents, there is no where that says "okay, you've now made this choice, and we guarantee a healthy child"
It comes with the territory of knowing there will be a future of unknowns. Is it a boy or a girl? I don't know, we didn't find out and there's no picking or choosing.
An unknown that the child will be born healthy for the rest of his/her life.
Unknown
what happens if the child is born with a disability? A health condition? These are not choice, these are what life gives us- and a child is not his or her disability. A child is not some medical term used to describe a set of symptoms.
A child, my child, our child, is our child! And despite all his struggles, and disabilities, his behavioral outbursts,
he is our little boy and when he was only age 6 in 5 days (so really only 5 years and 350 days old) these most amazing poetic beautiful words came out of his mouth, thought of by his brain, and said to his mommy.
That's who our little boy is- and "sacrifice" or not, we will continue to fight, conquer, and hold his hand every step of this journey. I/we will continue to do everything in my/our power to allow our little boy, to be the little boy God intended here on Earth. And as much suffering as he's been through already in his short 9 1/2 years of life, it is our job to help him live to his full potential- no matter what that looks like.
But based on this sticky note that sits on my fridge, he has a lot of potential! Wouldn't you agree?
This is a picture of him on his 6th birthday- notice the little blue puppy he is carrying up the slide- that is still a treasured stuffie! This is my boy!
Sleep picture of the day!
So,
It's been a morning of quietness, my coffee, and wonder for what the rest of the day will bring!
Tuesday, March 18, 2014
Gluten Free/Dairy Free Enchiladas- yum
Lots of smiles, lots of laughing, lots of togetherness!
And trust me, this "good day" for us is probably still considered by most so dysfunctional... which is of course- one moment, one day isn't going to change the reality we live!
But this mama was able to make dinner tonight.
A dinner that hubby had 3 servings of... and every kid in this house ATE IT!!!!
Now that's just an amazing in of itself, so you're wondering what this mama made???
Gluten/Dairy free Chicken Enchiladas... and I have never made enchiladas before, in fact, I was pretty intimidated by them.
Lots of steps, lots of prep (or so it seemed) and in reality, I don't like to cook. I think I"ve mentioned that before. But giving credit to my little Ty guy, he has certainly inspired me more in the kitchen than I ever have been. And even expanded my kitchen to include "meals" not just yummy baking treats- cookies, pies, muffins, crepes now!
So it's funny how things are and yet honestly, I think I"ve grown more as a human being, a wife, and mother more than I ever thought was even possible. And I owe that all to my son, as difficult as every day is with him, and we only truly experience moments that are joyous, happy, calm moments.
If you haven't figured out yet, every day is tough with him- and most of the day is tough with him- and we just hope we can get a glimpse of calmness momentarily sometime in the day, momentarily a time where we can actually sit, feel our shoulders relax, our anxiety that we all experience (and yes, we all experience constant anxiety- that is pretty much our own beings defending themselves from the constant chaos that is from raising our special little boy. Of course we love him dearly, we've always promised him and each other we will do everything in our power to find answers, get him the help and support necessary to help him live a happy, fulfilled, joyous true life!
What does that look like, I have no idea- but we will continue our path of doing what we can to help him, no matter what! So with that comes anxiety, naturally!
But on a day like today, it's a little less, a little bit more relaxed then it's been actually in several days.
I got to make a meal for my family- that makes me feel good. I had some nice moments with Ty today, that again makes me feel good. I watched from the distance as Ty had some independent time on his own, without causing issues for others, without needing my constant (or someone else' ) constant attention, as he usually does- this is usually because of his own super out of this world anxiety issues- this is one aspect where we are hopeful the service dog will be a tremendous benefit to him. Just one of many benefits!
So again, I made dinner for my family. I had a few moments myself today of calmness, of feeling pleased with how this day "so far" has gone. That my friends is what is called a good day in my book!
Here's the recipe:
}: Karina's Gluten-Free Sour cream Chicken enchiladas. Recipe Source: glutenfreegoddess.blogspot.com http://glutenfreegoddessrecipes.blogspot.com/2013/08/karinas-gluten-free...
My elementary technology expertise is failing me at this moment- but you can check out the recipe at : glutenfreegoddess.blogspot.com
Monday, March 17, 2014
This is good news - the gut brain connection is real! Ask my son
utism is commonly associated with a number of medical conditions that affect multiple organ systems. The gastrointestinal tract is among the most common of these “comorbidities.” In particular, many children and adults with autism suffer from constipation, diarrhea, intestinal abnormalities and related issues. “In many cases, these GI issues may worsen autism’s behavioral symptoms, either directly or indirectly,” says developmental pediatrician Paul Wang, Autism Speaks senior vice president and head of medical research. In calling for high-quality research proposals in this area, Autism Speaks recognizes a number of high-priority needs: GI Pain and Behavior The pain and discomfort associated with GI conditions can cause behavioral problems, ranging from irritability and inattentiveness to self-injury. This is particularly true for those who have limited or no verbal skills to express their distress. “Autism-related communication challenges can make it difficult for therapists and healthcare providers to recognize GI problems in individuals with autism,” Dr. Wang says. “Too often, their GI disorders go untreated, and medication is used to control behavior instead of treating the underlying GI problem.” Autism Speaks recognizes the great need for clear, evidence-based guidelines for evaluating possible GI disorders and other medical issues in children and adults with autism, especially when new behavioral challenges arise. Exploring Gut-Brain Pathways A growing body of research suggests that some GI abnormalities influence autism-related behaviors directly through gut-brain interactions. One route would be inflammation in the intestines spilling over to produce inflammation in the brain. Some research has linked changes in gut microflora to altered brain function and behavior. Still other studies suggest that certain diets and nutrients can change GI health and brain function. “Many of these processes in the GI and nervous systems may be interconnected,” Dr. Wang says. “Yet they are largely unexplored, even in animal models.” Call for research proposals With its new request for grant applications, Autism Speaks seeks proposals that address the above issues. In particular, it is looking for clinical (patient-centered) research that advances the following: * Understanding of the relationship between gut processes, brain function and autism symptoms * Development of medical guidelines for evaluating individuals with autism for GI problems and other medical conditions that may be causing new behavioral challenges * Interventions that can correct or improve abnormal gut microflora or gut inflammation in those with autism * GI treatments that improve autism symptoms and brain function * Understanding of how autism and its associated medical conditions can affect an individual’s nutritional health * Understanding of the mechanisms that link GI and nervous system processes in individuals with autism.
Sunday, March 16, 2014
At what price?
absolute defiance, absolute the strongest will you would ever meet in a child?
To what point? And to prove what?
Maybe I"m missing something here, but it seems kind of ridiculous to "make" a child we know who suffers so much in every day to day activity, who enjoys learning, who wants to learn, wants to teach but yet we are trying to make him fit into a square box once again when he is clearly triangle shaped.
So, why? He'll read the recipe book I put in front of him and encourage him to cook something, or bake brownies, or I offer him a new book on animal evolution, on reptiles, snakes, dogs.
Why do we make children who are clearly differently abled.... fit into what our society feels is "the best" mold, the square mold, the one that according to everyone else is the 'right' mold?
Continuing to do this with my son, makes him even more unable to access his coping skills and enjoy things in life that he has begun to enjoy.
I can honestly say since he was born almost 10 years ago, there has been very little that has made him happy or that he has truly enjoyed!
He doesn't leave our house without over reaction to his system, without so much anxiety that he flees without hesitation to danger.
Why are we trying to make him say the word 'cat' written on a card, when we know he knows it, he knows he knows it, and to then just say, 'see we MADE him do something he didn't want to do!'
But that still doesn't help him or our family to have an outing, to go to the park, to walk around the block for fresh air, to experience an event that is joyful!
So I again ask the question, why? What price is it worth to people on the outside?
The price is usually too high, when he's simply not ready.
He suffers, our family suffers, it's simply not fair to him- it's petty in my opinion. I'm not here to "rule" over him.
We are here to guide him, to love him, to help him, to support him, to teach him, to do everything in our power to assure him a happy life!
And so far, it's been anything but
And to just sit on the outside, and let people who have known him for a very short time, who think they know him best, to force him so that we (everyone on the outside of Ty)can say we have the power over him, it's such a wrong approach. Just wrong! Aren't we trying to empower him?
Thursday, March 13, 2014
This is going to be amazing!
Our family (Ty) has been called to team training for CCI to get a service dog.
The process started almost two years ago, and we've been waiting once we heard we were on "the list" for 13 months now.... and we're next!!!!
My heart is still skipping a beat thinking about it... is it the answer to all the issues Ty faces?
Of course not, but it will certainly enhance his life, help him in so many ways, and be an amazing companion and literally a "tool" to the rest of us that continue to help him every minute of every day!
This is truly amazing, just getting through the process was pretty grueling, but we did, and they chose him to receive a dog to help him become more independent in his life- not just now, but forever really!
He will have this service dog for a very long time, into his adult hood and will be able to continue to receive a service dog if the need is still there once this dog is "retired" from service!
Amazing, exciting, scary, incredible, and something our family will look forward to. It will be an experience like no other, and will be an experience that we hope we can help Ty get through successfully!
It won't be easy going some new place for two weeks, and being challenged in a way that's new to him- but we are hopeful that the service dog they have chosen for him will enable him and literally be the working tool to help him get through more difficult situations! Service dogs are amazing in so many ways, and the research behind using service dogs for children with Autism, (which there is so much anxiety and inability to regulate)and for Ty he also has Post Traumatic Stress Disorder..... there will be so many incredible benefits to him in his every waking hour.... I'm just so thrilled to be given this opportunity to be able to help our son! Yeah...
Wednesday, March 12, 2014
Remembering the good moments from today- like French Crepes!
How awesome is that... I had never made crepes before (that was always Brian's specialty!)
They were absolutely delicious, with strawberry jam. We sat at the table together and talked about how great these crepes were!
And the other great part (I am just going to skip over the behaviors we had today to keep my mind on the good times of crepes!)...
We saved the rest of the batter after we made the two for us, and I got to make dinner crepes with fresh veggies, (bell peppers, onions, basil, avocado) and cheese!
Awesome dinner! Awesome crepes!
And as part of my good moments of the day, when Sarah came home from school I got Ty and Sarah involved with making a Leprechaun Trap (believe it or not, we have never made one before in this household!)
But I threw the ideas out there and they started to work!
And again, I am going to skip over the behavior details we experienced during portions of the Leprechaun trap making time- and forget that Ty was, well being difficult and rude and I will just remember how he was trying to tap into his creative side and come up with an idea, and had lots of ideas, so many ideas he couldn't stop!
But ultimately 3 traps were made and here is a picture of the child who didn't mind having her picture taken during this crafty time (Ty protested, which was absolutely fine- I do always ask if it's ok- and today, it was not! )
So bring on the Leprechauns...... we have gold waiting!!!!
"The Effects of spinning- A sensory Life" by Angie Voss, OTR
My son is the one who does not respond and me, well one spin and as Angie puts it I "toss my cookies!"
Ty would be called an under responder in this situation- and I would be an over responder. And believe me, my entire childhood was spent "over responding" to all motion, swings, spinning things at the park, the car (literally kept a barf bucket at all times).
Ty, he is definitely an under responder and lacks the PRN (post rotary nystagmus), however ONE time, during an OT session when he was maybe 6, his OT (who was really great, but just missed this one thing one time) and Ty kept spinning and spinning and spinning (even though he was in prone position.... I can hear him just going "weee" and giggling, but now we know this giggle to be the giggle of dysregulation- he's a little out of his mind- and she stops him from spinning, he stands up
I see a look on his face, a look that only a mommy knows!
I tried to rush him to the bathroom, but nope- not even close!!!!!
Anyway, excellent article once again by Angie Voss, OTR from A Sensory Life.
By Angie Voss, OTR
The Effects of Spinning on the Brain
"Think about it...spinning is probably the one thing, that if done long enough with the neuro-typical brain, it WILL cause some type of systemic reaction. Not just dizzy and falling over, I mean a REAL reaction like nausea or flushing of the face, or even tossing your cookies. This reaction happens for a reason...the brain is protecting itself from detrimental input and neurological impact on the brain, therefore it responds by telling you it is time to STOP by causing a systemic reaction. This is why the fair and carnival have so many rides which spin you intensely and for long periods of time...they don't know why and what it is doing to the brain...all they know is it provokes an extreme reaction, especially when they switch directions on you when you have been spinning very fast for a long time. Spinning is terribly misunderstood in the therapy community and also often used as the "go-to" technique for therapists attempting to incorporate sensory integration in to the treatment plan. Many parents of children with sensory differences also do not know enough about spinning, all they know is the child craves it...so it must be good for them. And then you throw in the child who does not register or under-registers rotary input and it is almost like a special little trick or talent that they show to others. We must help educate our community in understanding the powerful impact of spinning on the brain. Here are some basic facts and points to consider... Rotary vestibular input (spinning) is the most powerful form of sensory input that the brain takes in to process 15 minutes of vestibular input can have a 6-8 hour impact (good or bad) on the brain and self-regulation Some children with sensory challenges do not register rotary input at all and lack a post rotary nystagmus (PRN) Some children with sensory challenges over-register rotary input to the point that one rotation can cause a significant response and a systemic reaction. It is possible to register rotary input correctly in one direction, but not the other. So basically, a child could handle spinning or detect the feeling of spinning when going to the left, but not at all to the right. So here's the deal....spinning can be a very important and powerful technique used in sensory integrative treatment, but it must be controlled, monitored, and understood or it will likely back fire on your child and you won't even know it. I say you won't even know it, because the meltdown that occurs over the door closing a little too loud may have been due to the brain still trying to "unload and process" all of the spinning input the child received 5 hours earlier. You are probably wondering...well what about the child who doesn't get dizzy and doesn't show any type of reaction to spinning? It is obviously still not doing it any good since it isn't registering the input. INSTEAD, have the child spin in prone extension, and control the spin to 1 revolution per second, spinning a maximum of 10 times then STOP (for a second or two) and then have the child spin the other way. This way the brain begins to learn to register the rotary input. The uncontrolled and unlimited spinning is not the answer. I have witnessed in the clinic many, many times over the years a child first assessed who does not display a PRN at all...no reaction. Then, even after a few sessions and addressing the vestibular system correctly, a PRN is elicited! It is an incredible moment, yet often very scary for the child at first, because they have NEVER had the feeling of being dizzy. So here is what I would love for you to walk away with after reading this...and PLEASE share this and spread the word! Spinning needs to be controlled, supervised, and monitored with our children who have sensory differences Teach your child to spin no more than 10 times in one direction at 1 spin/revolution per second...then stop briefly, then spin the other direction For those children who do not get dizzy, encourage spinning in prone extension (on tummy) to help the brain learn to register the feeling of rotary input, along with following the two items above Spinning is incredibly powerful and the brain may need a long time to process the input Swinging in linear planes in prone extension and full body flexion are sooooooooo much more important and beneficial for the brain in regards to the power sensation of vestibular input. Focus more on this type of swinging rather than so much spinning."
Tuesday, March 11, 2014
I'm stepping in
We are all tired and can't get to bed early to try and make up for the lost hour. Yesterday was okay, but talk about dragging today- wow!
Ty struggled a lot on Sunday- it was so up and down, I don't think my head has stopped spinning yet!
Yesterday he was the last one to wake up- that was quite nice...
And today has been a pretty good day- until something I've talked about with the behaviorists (a technique that was not working and was not something that could continue at this time since it consistently sends him into a behavior that is pure aggression and destruction and well, what the hell does he learn from that- it's the only way he tells us he's not handling it....
So last time it was a few weeks ago and I had a talk with them, we just can't go there knowing the outcome, it's not fair to our family and it's not fair to Ty... he may be a very difficult child, okay, not maybe, he is... but I do not have the right nor does anyone else have the right to purposely challenge him on something we know isn't effective and always sends him into "freak out" mode....we will know when he can handle it... believe me- he has come so far- yet to everyone on the outside, they would never know it.
He gets himself dressed now, and not only that, when he needs help, he simply asks. Do you know what he used to do?
Freak out, scream, cry, throw, and become very destructive. Even as a 4, 5 and 6 year old... and even 7 and 8.
It's hard to explain to others who don't understand these types of developmental delays and issues that putting on a pair of pants, or putting on a sock, well it was and still is a very challenging task to him. But after years of OT, and practice at home, and patience by us as parents, he gets himself dressed.
It's not easy, there are a lot of steps involved and the coordination of one's body and brain sending the correct signals, well, it's not that simply and when your brain and body don't communicate properly CONSTANTLY, well, no wonder it's frustrating and difficult.
anyway, back to this challenge, I usually no matter what don't step in unless asked or there is a behavior occurring that I need to help control.
With that being said, Ty was feeling so frustrated and kept asking me to help him, that B was listening and I'm using my words, and why should I use my words if no one is going to listen, I'm feelings frustrated!
WHAT!!!!!
He's feeling frustrated- this is so flippin' huge!!!!!
How could I stand back and not help him - this is exactly what we are continually working on all the time, every hour of every day, using our words to communicate how we feel, what we need, what we want, etc.. this is called 'FUNCTIONAL COMMUNICATION"...... it goes far beyond "words".... so yeah, I'm going to step in and assist my little guy who is struggling.
Sunday, March 9, 2014
Wish him a better day tomorrow
Yep, that he definitely is...... and I wish I could make it better for him!
All I can do is help him safely get to sleep and wish him happy dreams and a happy next day!
Tomorrow always brings a new opportunity for well, everything!
And that's all I can do tonight- is wish him a better day tomorrow!
Not gonna happen at this point
The time change, well, yes we lost an entire hour of our day- and I miss that hour.
My day struggles to exist on less time- and is constantly in need of more time.
However, as we've jumped our clocks forward, waking up to silence this morning was a very nice start to the day.
And then, well,
My trusty Mr. Coffee- well it served it's last Peppermint Mocha with Almond milk!
So that was disappointing this morning.
Then the day continued quite nicely- I finished my latest project and I can't wait to reveal it- it's just gorgeous!!! (Well I think so!)
I saw this flower in bloom in the garden- what a great reminder of this lovely spring weather that is coming our way- trees in bloom, flowers in bloom, things are green and lush and well it's just lovely!
And then my little guy did this for Brian and I..... gotta love when he's in this kind of mood!
Yes those are margarita glasses (outdoor plastic one's of course), a bottle of Margarita already to drink (it's quite delicious- from Costco!), a few snack foods, and his last touch was going back into the house, and getting the nicely arranged flowers he picked for me from the garden on Friday and put into a lovely Mason jar
Pretty perfect, and Brian went and got the outdoor campfire, and for the first time this year, it was campfire, margarita's, and just simply chilling!
It was nice, then our next moments, well, they became very different moments!
I'll give the quick low down- obsessive behavior over making our own pizza's
Locking us out of the house
Then making lemonade for all to share
Then obsessed with pizza's again
Then yelling and screaming and knocking over patio chairs and locking us out of the house again
Then all is calm, until he perceived his pizza as being burnt
Knocking over things, locking himself in our room- and then quiet!
He's asleep under the bed and it's only 6:00pm
Then he wakes up, enjoys his pizza and we have lots of laughter around the dinner table.
And then he chooses to take a bath (thank goodness, that little boy stinks!)
Then he gets himself all set up for the bath- now it requires quite a bit of lego's, organizing what he wants to bring into the bath, and some lego building prior to bath- so ultimately he gets into the bath.... and after about 3 minutes..
He's screaming once again- saying the water is cold
Brian turns up the temperature, and he is still unsatisfied with the temperature and gets angry once again...
He throws all the toys of the bathroom, he throws water on the floor, he screams some more, and then he simply picks up a bucket full of water, gets out of the tub and proceeds to throw it on the carpet in the living room!
We ignore him (it's part of the behavior plan0
He refills this bucket and again throws it in the same spot on the carpet in the living room.
Brian is about to lose it... I remind him we have to ignore the behavior... and Ty again fills the bucket and dumps the water... and then does it one more time before Brian has to take control of him. This sucked!
there is simply not much we can do, ultimately Brian can no longer restrain Ty, between still recovering from surgery about 8 weeks ago and his abdomen still be sore at times and his back which has once again been bothering him- I didn't want Brian to get hurt- it's only water... (well sort of!)... As items were thrown, objects knocked off shelves, and his little fit of property destruction continued, I grabbed a giant couch pillow and started to pretend to be a cave man (grunting noises only) and use the cushion to essentially Sumo Wrestle him
This could have gone one of 2 ways- he either gets more angry and destructive or as my plan was really hoping, he couldn't keep up the anger and it refocused him perfectly.. and so for the next 20-30 minutes I only grunted silly deep noises and sumo wrestled him... with the intent to give him some good proprioceptive input that provides a nice calming effect to help him gain some control over his own body!
He fell for my plan perfectly, he wasn't angry, he couldn't stop laughing and the play continued on.. .luckily!
But as we've lost one hour in our day, and my head is still spinning from all the events that took place in the last 5 hours- I sit quietly here, pausing for a moment, realizing this is the day of change once again. Once again, we are springing our clocks forward, moving our hours ahead, taking one away, my flowers are beginning to bloom, the weather is beginning to change, the season is coming to an end quickly- and so with this change, as usual for our little guy, this change has proved to be just a bit much!
Is it any different then the day we changed our clocks last spring? Nope, and it's not any different from the day we changed our clocks back when he was 3 or 4!
And if it isn't changing them forward, it's changing them back only a few short months ago...
Again having it's impact on my little guy ... and as great as some moments were today, although brief,
it is a reminder once again that the universe is in constant change- and even though we try and do what we can to help Ty, sometimes it just doesn't matter.
And at 9:35pm tonight, as he FINALLY got onto the potty- and has now been sitting for about 30 minutes, Brian just comes out and tells me "the bag didn't drain"!
Which means the bag of solution we use to irrigate his bowels, didn't drain and there fore he has been sitting there for absolutely no reason because well
his bag didn't drain! UGH
This is just the thing to happen at the very end of this day that we lost an entire hour.
And although we are all exhausted at this point, and want to desperately climb into the bed and close my eyes, it's just not gonna happen at this point- we have to use every trick in the book to keep him on the potty- and it's 9:40pm! arrrggggghhhhh!
Friday, March 7, 2014
My three sleeping pups!
Three pups in dreamland!
Thursday, March 6, 2014
Sensory tip of the day- by Angie Voss, OTR "Understanding your child's sensory signals"
This is great information- and so true in my son's case! Co Regulating sponges in deed!
The boy hasn't stopped moving or talking!
But I think someone, that would be Ty, has beat me to the start to an energetic day.
That boy hasn't stopped moving or talking for the last 2 hours....holy he's making my head spin!
And then,
CRASH
he's asleep on the hard floor, in front of the little heater fireplace.
And just like that, I am now sitting, and listening to my music, and it's quiet for the first time since I woke up.
Thank goodness because my head has been pounding this morning, and well, when he's so jacked up (as we call it), it's hard!
Here is to a calmer, quieter, slower day..... cheers!
Wednesday, March 5, 2014
Good Luck Ty
Sarah is out of school early today 1:30pm - an hour early for conference week.
Brian has to pick up Sarah from school and bring her home and the girls both have dentists appt. today at 4:00pm so Daddy has to come home early to watch Ty. (We are not able to leave him with anyone else- it's either myself or Brian always supervising- it's just not safe for him or someone else when his behavior is so unpredictable!
So lots of things going on, I have "planned" (we'll see how this goes) for Ty and I to do an activity in the kitchen.
We are going to make crepes- fun huh!!!
I gave him a little information yesterday about this idea, he seemed to be willing yesterday- so I"m hoping today goes "as planned"...
you just never know. But what fun- crepes- but with all the different events of the day, happening all within 3 1/2 hours of each other (that maybe not be that big of a deal to some of us, but to Ty- 4 different transitions, so close together
well, let's just say I better be prepared for things to "not go as planned"
That is a lot of challenges, a lot of transitions, a lot of demands that will require him to access his ability to cope, control and simply regulate himself (or at least attempt to) to get through this 3 1/2 hour window.
When you look at the world through "his eyes", the world changes. The world becomes a faster, noisier, bright (as if you are always looking directly at the sun kind of bright, where you just can't stand it)
You don't know what's coming next, you know the feeling you get when you are inside an haunted house during Halloween.
Where every step you take, there is something jumping out at you, or something trying to touch you, a new noise, a new scream that startled you, not ever knowing what's going to come next as you approach the next corner.
This is a perfect analogy of what his world is like to him.
Some days are better than others of course.... it all depends on his ability to regulate enough to meet the demands being thrown his way.
But at any given moment, the demands and challenges "he perceives" to experience, can instantly jump him right into fight or flight and it's all over. No reasoning, no rational thought, no understanding, no ability to cope with this increase in demands.
His body says "get the hell out of there- or you better put up the fight of your life!!!"
End of story-
So who knows what will go as planned, what will challenge him beyond what he can handle, or despite the increase in challenges, he is able to "cope and move forward!"
Wouldn't that be nice.
And as they say in the Disney show "Good luck Charlie" (which is our nightly family show we all enjoy watching before bedtime
"Good Luck Ty!:
Tuesday, March 4, 2014
*Sensory Tip of the Day!* Do you have a little "W-sitter"? from Angie Voss, OTR
Understanding Your Child's Sensory Signals ***Sensory Tip of the Day!*** Do you have a little "W-sitter"? It is important to address this at an early age, it can adversely affect development. Possible reasons why children W-sit: 1. Poor trunk control and lack of core strength 2. Feels good to the nervous system, since it provides a dose of proprioception to the lower body 3. It makes sitting "easy", often due to lack of pelvic stability 4. Can serve as a sensory anchor which is regulating for the nervous system Reasons why children should NOT W-sit: 1. W-sitting places too much strain on the knee and hip joints, which can lead to orthopedic issues 2. Does not allow for proper core strength development 3. Inhibits trunk rotation and crossing midline 4. It is a very hard habit to break once the brain and body develops muscle memory for this position. 5. Creates substitution patterns for functional sitting posture Ideas to Help! 1. Encourage (without scolding or making it seem as though they are doing something bad) to "switch their legs"....say this in a supportive and fun tone. 2. Encourage long leg sitting, criss cross applesauce, or side sitting instead 3. Encourage sitting on a ball chair, T-stool, or low bench instead 4. Encourage prone on elbows (laying on tummy) as an alternate floor position ~Angie Voss, OTR
>p>Monday, March 3, 2014
Bummer
gone
I was letting, as I usually do, Ty use the SD card from my camera to video tape himself dunking his indoor basketball... he typically uses my camera to do this, but wanted to use his camera.
and as fast as that, it's all deleted- gone!
Wow, that was a big lesson for mom.... and with all the times I have let him do this before, nothing like this has ever happened- and believe me, he does this a lot!
Quite a bummer! sigh
Kabobs prepared by Ty
He asked me to help him cook chicken, he wanted to make kabobs.
So the only thing I did was stick some chicken tenderloins in a pot of boiling water (this is most certainly the easiest thing to do at this point, it gives me flexibility to reuse this chicken that he plans on making into kabobs)..
He got out frozen bell peppers (he thought this would be easier then cutting fresh one's, and I may have tried to persuade him away from the fresh bell peppers since those are for a meal later this week and we have lately been going through so many veggies, and other foods because Ty is so into cooking right now
So, he 'chose' frozen bell peppers for his kabobs. But he read the directions on the package as to what to do with them, and put them into a bowl and put them into the microwave- and there he has it!
Bell peppers, chicken, and kabob sticks.... so while he was busy preparing 'his meal', I was able to make our meal for dinner.
Which pretty much never happens, if I haven't said it before, I hate cooking, I love baking- end of story!
Luckily I married someone who does like to cook and is good at it- I know we bore him because none of us have very sophisticated palates, well except for the 12 year old, I have to say she has way more sophistication then her mom when it comes to food, flavors, and even trying new things.
I have always said, I have the palate of a child- and the blander, the better.... may be boring, but as I have to remind others, we all have different taste buds and we all taste things differently, what's bland to one person, maybe quite full to another, sometimes too much flavor!
Anyway, Ty made his very colorful kabobs: here is a picture
okay picture is on the camera (yes I still use a real camera, I know old school!), anyway, picture is on the Sd card, but not showing up on the computer.. so this is what I call a glitch, and I have no idea how to fix it at this time- so picture thisWhite plate, red bell peppers, yellow peppers, chicken, all placed along a kabob stick. It's colorful indeed!
And best of all, it's made by my Ty- that is pretty great!
And even though the day was far from perfect (who am I kidding, no such thing as a perfect day- life isn't that way whether you have a kid with Autism or not... agreed??? lol)
But even with all the little kinks in the day, as he prepared his dish he was so excited about making, and I was able to work beside him in the kitchen cooking my meal for the family,
well it was simply nice.
Now, if you have never cooked with your kids before, or baked bread or cookies, muffins- anything- well I have one piece of unsolicited advice (usually not my thing, trust me the last thing a mom, especially a mom with a kid with special needs wants to hear is "other peoples opinions" which is usually how unsolicited advice comes out- and it's not usually EVER phrased in a way that is well, KIND, it's usually a thing that well, pisses us off!
but here is my advice-
cook with your kids, bake with your kids
I have always done even simple things since they were literally toddlers- and well, you just never know what that experience will do for them! I was doing this well before we ever knew anything about Ty's Autism- it kind of helped put some pieces of the puzzle together, but we definitely enjoyed moments of baking cookies, stirring, helping mommy, whatever it was- maybe this is why he loves to cook today... and when you have a kid with the issues Ty does, well, this kind of practical life skill-
It's pretty incredible! And I know it helps him on so many levels the rest of us will never understand.
This warms my heart!
Sunday, March 2, 2014
I just love Lego's- I think I've said this before-
We watched "Blackfish".
My kids love documentaries, they love NOVA, they love animal documentaries, they love "Planet Earth". It's actually something we've usually been able to watch all together and enjoy it.
So, again back to "Blackfish", as it was of course disturbing because of the way the industry treats these incredible animals, but nothing inappropriate by my standards... (now my kid is not able to watch Transformers, Marvel Super heroes and several other cartoonish shows because they are simply too activating to his brain.
One thing I've learned through all the OT over the years, input in, is input out.... no matter what- things that stimulate the brain, in put in.. also has to have a release, in put out!
And for Ty, this is never a pretty situation. So, many many cartoons, are too fast paced, too quick with lights and activity, and it doesn't have to be a cartoon- just something that we have noticed is too activating to him- therefore causing an input out reaction that he is never capable to stay in control.
Remember my posts on self regulating... well he doesn't self regulate!
So, documentary was good. My kids enjoyed it, it's eye opening to them about how things seem, but what the reality is. I like that it teaches some good critical thinking skills and especially inhumane situations- it helps them with empathy- and empathy towards animals is much easier (actually for both Megan and Ty), but especially for Ty.
So, love when he gets all geared up in his mind, filling it with ideas, imagination, creativity, and then is able to act out his ideas. That's the greatest thing to watch.
And so (as I always do, ask permission to take a picture of "his play") he granted me permission to take a picture of this mornings creative lego play. It's so awesome- and so detailed!
It's a picture of a lego platform for the audience, in front is a bowl of water (yes real water)with a toy Orca Whale in it, as it's giant pool. The people are in the stands watching the performance of the Whale, and then Ty continues to show me how the whale jumps up and splashes the people. How cool is this imagination play!
The next picture is the rest of the Sea Land- 5 more bowls filled with water, different sizes to house different sea creatures. One has several sharks, one has a Manta Ray, one has other species of whales-some bowls have ladders leading into them, so of course the workers can enter the tanks. Then he also built the ticket booth where people pay and get a ticket to enter the exhibit (as he called it). Love this !!!
And there is a boat that can take them around or they can walk and go see all the different animals that are part of the park. Picture is below:
This was a great moment. He was playing, being creative, being calm, focused, using knowledge he had learned, acting out his idea. I just love what Lego's do for him.. I know I"ve said this before, but it's worth repeating!
It really allows him to him!
Saturday, March 1, 2014
It simply ended....
A turn for the better.... as hubby had to work this morning, I am sitting here watching my oldest and my boy play pool on our mini pool table.
And they engaged for about 30 minutes.!!!
30 minutes.. are you kidding me... that is simply record breaking!!!
And and..
get this, Megan showed so much flexibility whenever Ty came up with a "rule change" mid game, or didn't like something....
rather then completely being argumentative back at him, as usual
she choose to just say, ok whatever, I'll let it go- let's keep playing!
Now I totally understand the unfairness with this.. but when it something we are constantly working on with him, and she historically will hold her ground to no end, which she herself has flexibility issues and rigidity issues.... I was so incredibly proud of her!!!
And him, because he too wanted to keep playing with his big sister and showed as best he could good sportsmanship (we established the rule from the beginning of no trash talking and one re-do for missing the white ball from the beginning)...
So they did it. They even choose to play 5 games of pool. And and........
it ended on good terms! At the end of the last game, with no yelling
no unfair whining, no hitting, no throwing, no stomping off in anger....
it just simply ended, they talked about how Megan lost because she hit the 8 ball in the wrong pocket from which she called... and that was it! They laughed about it, and went their separate ways!
oohhhh mama is a happy mama in this moment!!
Here is a picture of a different awesome moment between these two... they make me so proud!