Natural play...... it's not so natural to some kids

" HOW DO KIDS FEEL PLAYING OUTSIDE? It's all about sensory experiences; children judge nature by how they can interact with it rather than by how it looks. And all the manufactured equipment and all the indoor instructional materials produced by the best educators in the world can't substitute for how it feels to a child to build a trench in the sand or squish mud between her toes. And they cannot replace the sensory moment when a child's attention is captured by the sparkle of sunlight through leaves, the sight of butterflies or a colony of ants, or the infinite space in an iris flower." by Vicki L. Stoecklin, M.Ed. I totally agree with this idea of free and natural play. And I also have been a mother to children who struggle to play naturally. Playing isn't always easy and second nature to certain children. I try my best to create spontaneous creative play areas, and provide just the environment for them to be creative and run with their ideas. It seems so simple to just tell a child to go and play- many parents do this and the child happily skips off to play with toys or in the backyard. When I say this to my kids- I get a lot of anxiety, whining, and "I don't know what to do!" comments. Playing is hard for a few of my kids. So I love natural playscape ideas, for kids to be outside, to breathe the air, feel the wind, hear the leaves rustling. I myself am much happier outside than inside. And the sensory experiences are real, and can be wonderful, but also overwhelming for some. So I try to create a safezone that provides just the right amount of sensory but without overload- colors, gardens, climbing, swinging, pretending, exploring, digging, textures, butterflies, ants, bubble bees, hummingbirds, blue jays, squirrels, ladybugs, catepillars. These are things to explore, learn about, observe, play on, stimulate the creative mind. And without too much structure. Structure can be great for many times of the day, but when you have children who are driven only from structure and struggle with unstructure- something seems to be absent in the childhood. Play is critical. Play is important. Playing is learning. Play based learning is researched, well understood, and in reality works for so many- then the structure of the classroom comes in to their world without the balance of unstructured time. Free to imagine and explore. Free to observe and learn from. Whether it be a mud kitchen, making great concoctions, mixing, adding this, adding that- pretending it's food, a cake, a muffin, spaghetti dinner. That's wonderful childhood experiences. So below are a few of my natural playscapes I've created for my children in the yard. A pirate ship, a 3 level climbing tree house, swings, ladders, gardens, rope bridges, stumps to play with, rocks to line up, stepping stones, a musical wall (bamboo hanging from a tree limb)- and climb, and climb and hang, and climb, and climb some more. Okay you probably got the picture - especially for my kids, climbing has been a scary difficult thing and they didn't do it. So if I can encourage them to climb, to swing from, to hang upside down, right side up, then I know it's a good day. Especially for my Ty. These are all wonderful proprioceptive activites that bring organization, calmness, joy to him that can be very helpful for at least the following few hours. That's about as long as a good proprioceptive session lasts- 2 to 3 hours. So here are some examples of things my children like to play with in our yard that helps faciltate fun, messy, engaging, creative, playful activties. And really there are no age limits when it comes to this kind of play. I even enjoy playing on the rope bridge, creating a mud cake, and of course digging in the dirt. I love dirt! And to see my kids exploring nature, pausing for a butterfly they see, or a hummingbird- it's wonderful and always makes me smile. Because after all, it is the little things in life that can bring so much joy. I love the phrase- remember to take time to stop and smell the flowers.

Sensory Modulation........ this is what happened last night!

http://asensorylife.com/sensory-modulation.html Another great article by Angie Voss, OTR from A Sensory Life on Sensory Modulation. And this is definitely what happened last night for my little guy, after a pretty good day, getting little sister to and from school, a new routine, lots of great heavy work- proprioceptive input- pretty calm, but in the end: BOOM... but it was a different boom. It was despair, tears, so many tears, hallucinations, freaking out, crying and crying, okay sobbing really. This went on for almost 2 hours- he crawled around trying to hide, he freaked out when anyone approached- so we didn't do that- he was hugging the fan, he kept saying the strangest things that made absolutely no sense. There was continued crawling around the house- and alligators chasing him, and snakes trying to bite him, and just very strange behavior. We were not sure what was happening to him. We had to just let it ride itself out- he wasn't damaging anything, or hurting anyone, but I was scared. I was scared because I haven't seen him do anything like this before. And it continued over a period of almost 2 hours- this strange behavior, pretty out of it mumbling, and seemed like hallucinating. I wanted to cry- but I knew I couldn't. I just sat quiet, non threatening, watching and wanting to hold him- but he didn't want that and he freaked out every time we approached. So we didn't. So I continued to just sit. And wait. My heart breaking for him- is he having a major mental breakdown? Is he hallucinating? What is happening to him? We know his aggressive, anger and crazy behavior that he destroys property and tries to hurt us because he is literally in fight or flight. But what was this? What are we missing in him is what I wondered during this episode. It did remind me of many times when he was little- like 2,3 and 4. He would have these strange episodes of just running around the house, crying, screaming, sobbing- completely out of control just almost like trying to escape his own body. And no way we were ever able to console him- when we approached him he would just hide and run away. But he only cried and screamed. This time there was a lot of verbal talking, didn't make any sense, but snakes were trying to get him, alligators were everywhere, he thought at one point I was a ghost and dead and he kept saying he didn't want to die. Then he thought our little dog Oliver was dead. It was all very strange, very odd, very different, and very scary. But I"m wondering- trying to put pieces together- because I always have to know WHY and how to help... that's my role - so he had a good day, he had a lot of good proprioceptive input, we did leave the bubble to take Sarah to school and pick her up. He had a few minor behaviors, but nothing major. Why was this meltdown different? I definitely know sensory modulation is a big problem for him- what this article describes is him- the quick switching, the constant shorting of circuits, the not knowing how to speed it up, or slow it down- all this self regulation, that he struggles with 100% of the time. Was this a short circuit moment (okay period because it was so long) that it was despair and sadness and honestly a bit of craziness- and not his more typical pure anger and aggression and destruction behavior? I just don't know, it's a very helpless feeling. So sensory modulation- when things get jammed, confused, put down the wrong signal line- it certainly makes for some very difficult moments for these kiddos. And for my particular kiddo- when he's over responsive to some things, under responsive to other things- one day it's this, the next day it's that... always leaving us guessing- always leaving us trying to figure it all out to help him. Trying to just get through the day the best we can, maybe have some happy moments- helping spend some loving time with the girls, and know that tomorrow is always a new day and we- I have no idea what it will bring. But we are doing are best- we are trying to bring the best possible quality of life for Ty and the girls. Good quality family time- good examples of love, respect, joy, forgiveness, and acceptance. Isn't that what all parents really in the end want for their families? It's not about THINGS, it's not about BIG TICKET ITEMS OR TRIPS, really it's about your kids knowing they are loved, and helping them through the bumps of life. Spending time reading a book with them, if they won't look at a book, then finding common ground to engage with each other- our animals have brought that to our family. And one moment at a time- one conversation at a time, one cuddle at a time, one big family giggle at a time- these are our families precious moments that we focus on and strive to achieve everyday! Now of course, I absolutely hope the rest of today continues as well as it began. I pray that Ty handled the bike trips to and from school to bring Sarah and pick her up. I hope I've provided enough of the right inputs to help him remain calm and continue on with the day without major behaviors. I hope that tonight is nothing like last night. That was simply awful! And if I felt this way watching Ty go through it- I can't even imagine what it must have felt like for him, experiencing it all.

first day of school can bring lots of feelings.........

Well, first day of 7th grade, first day of 1st grade, and first day of a new schedule once again for Ty. Lots of emotions this day- very excited for all my kids for all different reasons. But my first baby is off to Jr. High- don't know how that happened so quickly. My 3rd baby is off to first grade- at school now all day, eating lunch at school, just not having her around so much- which is good and bad of course. But she's my baby- and has moved into a new level of school, and development and she is nice to have around. But proud of her as well- of course. And this day also brings lots of emotions I have for Ty. If he was following the original trajectory of his education plan- he would be entering 4th grade. But we opted for him to do a second year of kindergarten, for so many reasons. So that would then make him a 3rd grader this school year. But as this school year begins for so many- he doesn't start school. Just like last year, he doesn't attend school at this point. Why many wonder and just ask? Well, we did preschool with him- not successfully. He went into Kindergarten, again, unsuccessfully (this was all before the Autism Diagnosis- all his delays were simply "blamed" on his medical issues"). Then we gave another try at Kindergarten, and that attempt lasted 3 months before we had to pull him out- then we continued that school year through an independent study program through our local school district. Basically it's homeschooling- but we have the guidance of a teacher and we would meet with her once a week for an hour. Seems pretty simple, I didn't have to create lesson plans (although he was only in Kindergarten). But this too ended not well. During this period of 6mo was when he was Dx with Autism and a Mood Disorder-NOS. So we were still in the gathering of information period for him. So then it was once again a summer break- but no services had started yet. He qualified with out local Regional center and we were on the right track- but wow everything takes forever to process, to get appointments, to continue to collect and gather information for what his needs are. We had our local Area Board 3 representatives on board for support for his IEP. As school district continued to fight us on providing him with services and proper supports for his individual needs. Literally to the point that they had said Autism is not interfering with his ability to learn- WHAT!!!!! Are you kidding me??? Here we go again- now it's not fighting the medical establishment to get the proper care for him- now it's the school system. And what a system it has been for him. Just because these are the services you offer (and nothing else) doesn't mean that's the services that best support my son in an educational environment. Period! Our district is a full inclusion district- which is wonderful to have that as an option for those children who will thrive and do well with inclusion. Problem is my son can't handle the inclusion. If he can't handle going out in the community to do "fun" things, if he can't handle going to friends or family's house for a fun gathering, if he can't handle eating at our family dinner table, if he can't handle simply walking around the block without behaviors- well how on earth is he going to handle a classroom environment of 30 kids, where it's supposed to be a stimulating environment to learn, to grow, to socialize, to thrive. He can't even sit in a chair without almost falling out- he can't look at others when they are eating- it's as he say's it "so disgusting"... his sensory is off the charts, his trying to compose himself, to not fall out of his chair, to try to follow instructions when he doesn't understand them- so he literally just 'COPIES' his classmates aka imitate. Which is amazing, yes, but ultimately that kind of stress, that kind of overload to his system, that kind of constant disorganization, from noises, to lights, to smells, to trying to understand and socialize, to following rules, to trying to tune out distractions, literally just trying to navigate this giant classroom, filled with kids, and things all around. Until you have ever experienced a sensory overload to the point of meltdown- I don't think most people can even comprehend what the world is like for some of these kids. And to them- all at once the world begins to collapse around them and it's like suffocating- and nothing is stopping it- I myself have had sensory overload meltdowns, even as an adult. I definitely have major sensory issues. A lot of people do, and it's how we either learn to cope that can help some of us be at least somewhat successful. Also, I am an avoider- just simply don't put myself in certain situations- because I know I'm not able to properly handle it- and it really is stressful. And from my little bit of experience with this growing up, I remember lots of things that "overwhelmed" me- and the physical stress it caused. I was always that kid to throw up due to either excitedness, or anxiety. I always got car sickness, motion sickness even on the playground (damn those tire swings). But what I experienced is still nothing compared to what my son must go through at every waking moment, at every single minute of every single day of his life. If you just stop for a minute- and where ever you are pay attention to the sounds, the smells, the tiniest of noises, the feeling of your clothing, having someone "make you eat dog poop", and people telling you to do this or don't do that, or go there- and trying to put all these sensory messages in there proper place in the brain to then have the proper response.... well it just isn't going to happen! All the messages are all jumbled up, and confusing, and he can't understand someone's direction and no way is he going to eat 'poop' (because to him that's what a lot of foods look and smell like), and every minute of every day for him is "ahhhhhhhhh" get me out of here- So, maybe this will help some understand and look through a different lens of the world for a child who not only has Autism, and Sensory Processing Disorder, and a Mood Disorder, and major medical problems that cause him quite a bit of pain, regularly, anxiety, PTSD, and this is his world. And he couldn't at this point deal with this intimate world of his own, and participate in the outside world where he can relax, enjoy, develop, grow, and learn. But in our closed bubble world.... WOW - he eats food, so he's physically growing, he's wanting to learn- he's engaging, he reads, he cooks, he participates (albeit minimally compared to a kid his own age), but it's what he can do- he smiles, he's happy, he's got a beautiful kind spirit that shines for the most part- until of course that bubble has leaks. But every day he's trying, every day we're trying to help him, everyday we just take a moment by moment- and over time you realize the progress that is being made- is tiny little baby steps. Rather then major regression to the point that maybe hospitalization would be necessary. That's what it came down to the last school attempt. Only a first grader- only was in school for 3 1 /2 months- but that was the decision- it's either we take him out of school or he'll have to be hospitalized at only age 7 1/2. Wasn't a tough decision. We were done fighting school, we were done doing it everyone else's way- sorry no one understands my son and the extent of his complexities, but he's our son and we know him best- and right now- from that day forward we had a lot of very hard work to do- to literally almost have to tame a wild animal. I hate using that analogy- but that's how things were. If he wasn't asleep (which was so hard for him- he was literally running around like a crazed manic, harming himself, harming others, destroying property constantly, running away, not eating, not sleeping - what kind of life is this for a child. Because this is the alternative for him. It's either the bubble- or so much chaos and self destruction. So as today is a joyful day for many- including me, my girls are excited- it's also a reminder that my son, age 9, is home with me and his behaviorist- working on very basic skills- coping, effective communication, independence, transitions, some very basic basic basic skills that most develop naturally- but not for him. And not early enough was his intervention- ever wonder why everyone say's early intervention. Well, prime example- because when a child only communicates like a 2 year old with hitting, tantruming, and other very ineffective ways to express their needs, wants, etc.... well you get a 9 year old who is bigger and stronger who still only communicates like a 2 year old. But that's hard, and now even dangerous at times. But interventions are in place- and almost 30 hours a week we have professionals- helping us, helping our family, and continuing to slowly but surely make tiny baby steps of progress with Ty. But as I"ve said, it's a moment by moment, day by day, and you can't teach someone 'anything' if they are literally never calm enough to stay out of the brainstem fight or flight response.... and that's what our bubble brings to him- for most of the time- so that these skills can be taught to him. And what the future holds, no one knows- but he's our son, we love him, and we will NEVER give up on him- so strange feelings today- but couldn't be prouder of all my kids today-This is a family effort- and our family is strong! And today we smile.

Had to share this article..... WOW!

Please read this article from the Huffington Post. All I can say is WOW! Some people live very simplistic and judgmental lives... very unfortunate! Maybe our society needs more education on "invisible disabilities". Either that or people should just mind their manners and not judge, right! Curious what others think after reading this... http://www.huffingtonpost.com/suzanne-perryman-/to-the-author-of-the-anonymous-note-left-on-my-car-window_b_3806012.html

First day of school for the girls...

How to help our kiddos who don't know where their body is.... read on

Another great share on kids and decreased body awareness and how to help them. From Angie Voss, OTR Understanding Your Child's Sensory Signals ***Sensory Tip of the Day!*** Children with sensory integration challenges tend to have decreased body awareness (body awareness is knowing where the body is in space without have to look at the body parts). To understand this concept...close your eyes...and most likely you can identify exactly where all parts of your body are positioned. Our sensory kiddos often are unable to identify where their body is in space. So just imagine how difficult it can be to learn a new gross motor skill or sport or even imitation of body posture in a simple movement activity. The very best way to improve body awareness is to incorporate ongoing mini doses of full body proprioception throughout the day. There are many ideas all over my website and in my books...here is a link to some of my favorite ideas. One other recommendation is swimming...it is such an effective form of full body proprioception, and overall very calming, organizing, and regulating for the nervous system.http://asensorylife.com/joint-traction-and-compression.html

Mommies Monday morning.....

Well, the bad part was having to get out of bed because I was having objects thrown at me. Never a good way to start off a day. Plus Ty had woken up at 3:30am. Woke me up- he finally at 4:30am took Oliver out of the crate (our dogs sleep in crates in Ty's room)and he and Oliver crawled under my bed and finally fell back asleep. Until 6:30am. So this was the start of my Monday. Which I don't even mind the 3:30am wake up call since he was calm. It's the having to get out of bed to deal with his behavior that I hate. So, ultimately things calmed down- he picked everything up that he threw. And today his "shop" is open for business. Yes, we have put a store together, actually a boutique, for Sarah to shop for her school clothes in. Full of clothing racks, shoes on display, and pretend money and cash register. She is our third child, my second girl, and the youngest of all of our friends kids. That is the recipe for HAND ME DOWNS! And she loves it- gets beautiful dresses, skirts, everything she'll need for school. It's wonderful. But she misses out on the whole shopping experience- well sort of- but just like I took Megan, she wanted to shop for new school clothes. So, this is what we do- we set up the boutique of clothes in our living room, including a dressing room. It's fun! She loves it- and this year Ty has really gotten into it. Even hanging up all the clothes on clothes hangers to be displayed. This serious business. The store will open at 10:30am and Sarah got to do a preview of clothes at 9:00am.

So this was a good part to the morning. Especially because Sarah is so excited about starting first grade. And getting dresses from cousins, friends, well she loves it. So the store will open shortly for her to "shop" and pick out new school clothes. A second part to my morning- which was so cute. Ty getting creative. His brain spinning trying to come up with ideas. And after a big weekend of garage re-organization, I was able to put the platform swing back into the garage- which serves as an OT space, a craft space, laundry room, tool work area, pantry closet and bike storage- and pretty much all things storage. But spaces carved out to do the crafts, to play on the swing- it's especially helpful as the weather gets bad. And we're not outside as much. And for Ty, movement with his feet off the ground is hard. And I've been noticing lately he hasn't been doing it at all. Not to swing, not to play, he always wants one foot on the ground- yes gravitational insecurity for sure. I even built a new swing yesterday- it's kind of a 4 in 1. Old skateboard, handles on side. It can be a regular swing front and back. It can be a glider like swing- I said it's like a horse, or a motorcycle, it moves back and forth- it can be a standing swing holding onto the sides to project either side to side, or hang on to the water ski rope above and it can be a "wake board" kind of experience. Personally I thought it was pretty cool, so did the girls. Ty, nope didn't want to even try it. He really is a tough audience. So anyway, back to my day and Ty being difficult to get to swing. Which it tells me that system is really out of whack with him. I enjoy seeing him feel more secure to experiment with motion, with his feet off his ground. So when he went into the garage and started getting creative with the platform swing- yippee! Then he got even more creative- and put his high back booster on top of the platform (it's very low to the ground) and pretended it was not a race car. Then his wheels really started turning. Steering wheel, gas pedal, brakes. So he asked me to get him a few supplies- and he was off! Love when he gets the creative juices flowing. Then he called me in and it was no longer a race car, but a Star Wars flying ship- even with his own little creature friend and levers.

So this was my morning- and it's still only 10:30am. But even though I had to get out of bed in a bad way, these are the types of ups and downs through out EVERYDAY that I experience. Everything is a moment- a moment of bad behaviors and aggression, name calling- anger. A good moment of ultimately being creative, actually doing an activity on his own that is a purposeful activity- the swing, the dog on his lap, cutting a steering wheel out of paper- all very good useful activities (but please don't tell him that) :) So I will continue my day, wondering what each moment will bring my way. I'm hoping for more good moments then bad- but I"m also realistic to know there will be the bad- I just hope it's not too bad. My one wish for today- pretty simple. I told my husband last night- on this last Monday before school starts in 2 days: the behaviorist isn't coming today- so I"m here, with my 3 children without interruption, and I would simply love to be able to take a short bike ride with them. That's it- nothing fancy, nothing monumental- just a short bike ride- where we all enjoy it, smiling, no yelling, no anxiety getting in the way- oh and be able to come back home too! (that's a luxury- biking one way is easy- getting back home is never easy- and that's why we stopped doing it- takes the fun out of it when you have a kid who ditches the bike and runs, or sits on the curb, refusing to move. And as the adult, wondering how the heck am I going to get him home?? So, a simple bike ride on this last day- that's my one wish. We'll see how the rest of the day goes.... and just maybe we'll try it. Wish me luck!

Another great article I wanted to share- about MESSY PLAY!

http://asensorylife.com/messy-play.html from Angie Voss, OTR Messy Play! Picture Homemade paint, shaving cream, and painting tools Picture In the tub with no water for a contained messy zone! Picture Let em go to town! It seems as though the art of messy play is lost. From my experience, the typical American home and lifestyle does not offer messy play as a part of early childhood anymore. Now if you let your 10 month old smear the spaghetti all over the highchair tray and in their hair and you let your 2 year old sit in mud puddles, and you encourage some type of messy play each and every day... then you don’t need to read another word of this page. Now if you fall into the other category….then keep on reading... In our super-hygienic and academic-focused world, messy play and mud pies are words not known by children. Messy play is a crucial sensory stage of development for the tactile system and the nervous system for gross and fine motor development, body awareness, bilateral integration, left/right discrimination, and self regulation…just to name a few. Encouraging messy play on a DAILY basis will "do the body good". Let your child know it is ok to get messy, show them how to dress for the mess. Designate a messy zone and messy time…so they know when and where it is ok to get messy. Explore new textures and encourage tactile experiences. Let baking and cooking be a time to get messy…dig in! Messy play in the back yard on a warm or hot day is the easiest clean up ever….just a garden hose away . Beginning with infancy, let your baby feed him/herself, dump the baby food jar right on the tray and let em go for it. Bath time is an excellent time for messy play. Use play foam soaps, Sudsy Mudsy, or tub paint. The bath tub is also an excellent contained spot for messy play (without the water). Use a tub of cool whip, pudding, yogurt and let the child paint their whole body. THEN give them a bath, you are already there! Finger paint, finger paint, finger paint. Cook a big pot of pasta, add a little oil and let cool. This is quite the sensory experience for the hands and feet. A shaving cream slip and slide outdoors in the summer or put the shaving cream on the slide in the backyard, and watch them fly! Use soft paint brushes and pudding and let your kiddo paint himself from head to toe. And get creative...the possibilities are endless!

15 years later........

Well, big day here at our house. First, it's our 15th Anniversary, which wow, unbelievable- very proud of my husband and I and all that we've done these past 15 years- especially with our family. Because to say life is hard, well, we've created a new definition. But we still smile, we still laugh, we still tease, we try to keep our foundation that brought us together in the first place. (Which is funny because when you have a child with Autism, the whole teasing, being silly, a lot of sarcasm thing is not understood, and taken usually very badly- or he'll try and it's all inappropriate)- but that's what we do- that's been one hard aspect of "us" to hold our tongue on. as they say if we're not laughing, we might be crying- so I prefer to laugh- sarcasm keeps our world sunny... but we certainly do a lot behind closed walls, lots of laughing lots of goofiness. So, Happy Anniversary to my love! Second big thing of the day- I had to register my oldest for Jr. High. We walked her schedule, we figured out the locker (that wasn't easy for me, let alone my daughter), and just trying to figure out this whole strange time of life- as they call it now- TWEEN! I know she'll do fine- but wow I have a kid in Jr. High. How did that happen? And Jr. High isn't easy, well really for anyone- but then there's our family. And our home life, and the struggles that she has to "put up with" which I know isn't fair. Of course it's not fair. It's not fair for Ty, it's not fair for her, it's not fair for Sarah. But I"ll tell you one thing- we continue to tell our children "LIFE ISN'T FAIR".... But I know she will become a more compassionate, kind spirited person that has so much to contribute to this world because of it. Or she'll hate us forever and spend her life in therapy- but you know either way.. we did the best we could at that time. Isn't that what parenting is about anyway- no matter what circumstances you are given. No one ever knows what will become of their life when they have children, no one "plans" on your child having any special needs, any medical issues, things just happen. And as our vows were "in sickness and in health"- it really is that... and if you're not ready for that, then well, don't get married, don't have children, don't breathe air. Because no one really knows what the future holds. And whether it was myself, my husband, or any of our children- this is our commitment- to love them, take care of them no matter what, and to help them become independent individuals. That's our commitment- and no one said what the path would look like. No one said it was going to be easy. And in reality nothing would have prepared us for the life we lead right now- all we can do is show our children that we love each other, that we love them, and that we are going to make mistakes, but that's okay. This is especially important for our children that have "perfection" syndrome as I call it... that things "have to be this way and it has to be perfect"..... I don't know how many times I have to tell them- no such thing... I know it's just sort of in their brains, but with continued coaching and example- hopefully they will get that nothing is perfect, everyone makes mistakes, it's what you do with that information to help from repeating the mistake. But trust me, I still repeat mistakes, especially when I'm having 'A DAY'... because sometimes, it's just hard. There isn't a day that I/we don't deal with conflict, excessive behaviors of some kind, chaos. It's hard- day after day after day. In fact you don't even remember what it's like to not deal with that. That's our normal. But it is draining, it's exhausting, it's tiring, it's sad, it's hard, it's nothing I"m good at- dealing with conflict. Heck I am the type that avoids conflict at all costs... I really don't know how to deal with it in a constructive way. I've had to learn and learn very quickly- and how to apply it to a child who struggles so much from both psychological and neurological issues- and I crack sometimes. But that's where for the most part- my husband and I are a good TEAM! He brings me back to my feet, and I do the same for him. It's hard to always everyday hold yourself together as a mom, wife, woman, human being- when pretty much every waking minute is consumed by my kids- which can be wonderful at times. It's the excess behaviors, the not full understanding when he'll blow up, the constant need to make sure our household is in check and not overwhelming to his system or he will blow. And when he blows- it's not like when he was 2 and 3- the cost is now too high. Property destruction, self injurious behaviors, injury towards others. This can be the face of autism. Not for all kids, but for many families- and it's hard. Especially as our child is getting bigger, stronger, older. We feel even more pressure to 'HELP' him because soon he'll be an adult. An adult who will possibly still lack coping skills when frustrated, still lack effective communication skills to help others understand what he WANTS/ NEEDS. Be able to control his anger and outbursts. An adult who will need to take care of his bowel irrigation procedure on his own, take his medicines, be responsible for his own body, and be responsible in this world. These are my worries. But today, right now, he has spent the last 30 minutes wrapping special things in towels for myself and my husband. He was writing me a poem. He wanted to "spend his money to buy us our Anniversary dinner". These are the special moments that melt my heart and I simply let myself just enjoy the moment. And not let my worries take over. He's here, right now, being incredibly sweet, engaging, and calm. He's trying so hard and I know it- this is the boy I know who wants to come out a lot more then is able to. And I even more appreciate how hard it is for him every single minute of every single day. People always ask me, how I'm doing? And although I appreciate the kindness, very few ever ask how Ty is doing. I know from the outside we live a life that to most would essentially be impossible. But my husband and I, we are committed. We are committed to each other. Committed to our family. Committed to our daughters. And committed to Ty. Many many years ago we promised him that we would never give up on him. So many have, so many have wanted us to. You just can't believe some of the things we have heard over the years. But Brian and I no matter what- are survivors, we are strong, we don't give up. And our children know this. We will continue to fight for what our son NEEDS, fight to give him a good quality life- and that may not look like something that we currently know. But the life we are giving him right now, well, he's certainly happier. He smiles more, he's less volatile, less angry, less mad. Very simple things will set him off, but it isn't his every day demeanor. He wants us to be proud of him, he wants to please us, he wants to be happy. But for him, there are just so many things that get in his way and he doesn't yet have the skills or tools or language to properly deal with it. But that's why we'll never give up on him. We love all of our children and we try to provide them with the security of knowing our family is strong and there will be good times, there will be bad times, there will be struggles, there will be laughter, there will be tears,there will be unconditional love and support. Okay, so got a little side tracked, but my thoughts are flowing right now. Jr. high, anniversary, Ty writing me poems, a very emotional day for me. And to get to my third event today, was also registering my little one for first grade. This is my view of first grade. Kindergarten is pretty much like preschool- a few hours in the morning. Not a big transition. But first grade, well this is a big year- plus it's my baby. My youngest- she'll be at school all day now. She's the kind of kid who you really don't mind having around most of the time. She's just so happy, kind, and always wanting to help others. She truly has a beautiful kind spirit that makes everyone smile who meets her. And I'll miss her. It's the big jump that she's gone more then she's home. But I'm also very proud of her and I know how excited she is. Which is wonderful- she can't wait to eat lunch with her friends, have more recess time with her friends, and to continue learning so many new things. She has this kind of spirit- and it will give Ty and I and his behaviorist more time to work on his skill deficits, his coping skills, to bond, to grow, to learn together and to see him smile. He isn't able to attend school- we've tried, and tried and tried.... and luckily now with all the right supports in place, he's growing, making progress, but like I"ve mentioned before- the external world creates too much chaos for him, overwhelms him so much that he simply lives in fight or flight, he can't cope, he can't even co-regulate. It's the hardest thing to ever see in your child. They are just like a skeleton - no emotion, no joy, physically never present and somewhat lifeless. But we know he has this most beautiful spirit that wants to come out, wants to be present, wants to please, wants to be part of our family, wants to learn, wants to teach, wants to play, wants to enjoy the day. So really it's not so hard to "stay in our bubble" when we see this child come out- our goal is to continue to keep him out, keep his spirit open, see him grow and develop like children should. Is he unique- absolutely, aren't all children. When we signed up to be parents, we didn't sign a clause saying only healthy children without any life struggles, disablities, no medical illnesses. No, we signed up to love our children no matter what. To provide them with what they NEED to grow, develop, love, learn and be happy. And this is what our son needs in order for that to occur. Really, what parent wouldn't do what we are doing to help there child? And so 15 years later, we continue this journey- albeit rocky and bumpy at times with lots of struggles and chaos. But also with love, support and laughter we march on!

My sleeping Ty...

So, this is the blueprint of our family trips....

So, day 3 back from the beach. Monday, settling in actually quite nicely. In fact, my little guy has already made dinner for the family (minus 2 steps that I will help with in a bit). Yep, that kind of Monday. He came up with the idea, his behaviorist and him sat down and looked up a basil gluten free pasta recipe (he came up with these key words), and right now the sauce is simmering. He wanted to use the basil from his garden plot in the front yard. I just love when he's motivated to cook- it's a great very calming activity for him. It helps him get into a good zone :) In fact, he met a new behaviorist as well today- she'll be coming two times a week, and so something NEW, and Monday so a CHANGE in schedule from the weekend, and first day back after our trip... so lots to get used to and lots to get into groove with. This could have been a huge recipe for a disaster.... but I have so say, he's been settling back into home quite well since we've been back. Which is good- because this is the story of our trip (and it is exactly the same as all our other trips- literally at least 6 or 7 times over the past few years- and this is how it goes: Our family was not able to go on vacations for so long- ever since my son's cecostomy has been in place- he HAS TO BE HOME TO GO ON THE FRONT BATHROOM POTTY AT 7:00PM... NO MATTER WHAT!! Well, as you can imagine, quite restrictive. In so many ways. Plus, going places historically has been so difficult, and it's not easy eating out since I have 2 children including myself now, that are wheat/gluten and dairy/casein free. Let's just say between dietary restrictions and a very very very picky eater- very hard to eat out. And never mind the entire being out in public in a restaurant- well to say it's hard is a huge understatement. So vacations just were not happening- our kids were growing, getting older- and we had never even taken our little one on a trip. It becomes overwhelming just thinking about that... no beach experience, no special memories. Sure, my husband would take time off from work, and we would do stay-cation, before it became a thing to do. And we would treat it like we were on vacation- not get preoccupied by chores, and other household things- just simply be together as a family- and swim, BBQ, indulge in sweet delights, stay up light- even backyard camping (a few times anyway). My husband and I camped well before we had children- we went from Tent, up to little tent trailer- up a little bit to a hybrid trailer- back to a tent .... And it just never seemed possible to go anywhere now that Ty was having such great struggles. So, with some retirement funds, not much, but enough to get us a used travel trailer, sell our electric car (yes a car that has no doors, pure electric that only goes 25mph- perfect for around town until my son learned how to unbuckle himself and tried escaping a few times- so that car wasn't going to be so great for our family after all), so we were able to buy a bigger car to tow. So we did- my husband loves to hunt for a good deal and found us one. An awesome trailer- so now we are one of those families at the beach with all the accommodations of home- including a bathroom- and a kitchen to cook our own meals. Perfect, now just to get Ty to use the potty on the trailer. We literally practiced and practiced.... so now he does go on that potty- yeah- victory! And for the last 3 years we have had this set up- we go to the exact same campground, the exact same campsite, the exact same EVERYTHING>.... so it truly is our home away from home. We try to go 2x a year- for a minimum of 5 nights. Why 5 nights? Well, this is how it goes. Getting there, a simple 2 hour drive for some- for us- 2 hours of hell. Before we are even on the freeway from our town- we hear from the back- how much longer??? ugh, really???? And heaven forbid if there is traffic- oh boy! The longest 2 hours ever! So, it's always a huge accomplishment to just simply GET THERE!!!. So, once we are there, now it's set up time. As my husband always says, "what are you bringing, our entire house??" Well, actually almost- it definitely helps Ty to have 'his things'... plus our site has the most wonderful tree- the perfect climbing tree... and on one of the first trips out- we saw how wonderful this tree was to have. Not right away, but by the end of the week- Ty is climbing, swinging, playing, engaging, being independent for more then 5 minutes. It's such a beautiful thing to see- esp when you have a child who struggles so much with these basic activities. But like I said, not right away. Day 1, have to just get through. Usually major behaviors, usually needing restraint to keep from hurting himself or us, not a lot of sleep, not a lot of organized brain activity. But between myself and my husband who is incredible- we literally take turns, playing with Ty, occupying Ty, doing activities with him that help him through this transition, help him organize himself enough to even co-regulate (there's that word again, told you I would use it a lot), literally keep him busy and do very purposeful activities to calm him, organize him, regulate him. And most of the time that means, NEVER leaving our campsite. But that's okay- because we are literally camping in the sand, hearing the ocean, have wonderful camping loops to ride bikes, scooters, play catch, play with the dogs. Then the sand right at our site- is such a great sensory calming fun time- lots of digging (good heavy work), lots of collecting, lots of different fun things. I always come prepared with my list of activities- plus we keep things on the trailer that are new and novel. Things we don't have at home. And Ty has a very important job for our family. He builds the camp fire. Not set it, but stack the wood good for a camp fire to light.. he's quite a little master at it. He takes great care to pick the wood, find the scrap wood for kindling, and arrange it just right. So daily that is his job- to get us started. There was once a time (well less then 3 years ago) where he was deathly afraid of the campfire. Where we couldn't even have them- it just caused him so much anxiety. Then he progressed to just staying in the trailer, watching through the window- that was a big deal- he allowed us to have the fire, roast marshmallows, and he was okay with being in the trailer watching. Then he progressed to hanging out inside this great little tiny tent (his little sensory retreat)- where we would place it outside, at a distance, but he could still talk with us. Then about 1 1/2 years ago, he decided he wanted to set up the wood- okay. And the rest is history now, and he will sit around the camp fire with the family, roast marshmallows, and be present with us. It's wonderful. It's one of my most favorite things to do with the family when we go. So, fast forward, this latest trip. Same story, takes about 3 days for him to get used to being there. To really calm down enough to smile, laugh and be present. And it happens slowly. Where he invites one of the girls to play in the tree. Or they all ride bikes together. Basically it means he isn't needing myself or my husband 100% of the time any more. HUGE!! And this is when we get to relax a little. Now don't get me wrong- we don't have too much relaxing going on- there's this issue that they are fighting about- there's still his nightly flush that causes angst for him- and heaven forbid if we leave our campsite, walk about 500yards to the beach... nope- not a good experience. Should be, sure! But not for him- he becomes anxious, he becomes, irritated at all things, he's nervous about everything little thing everyone else is doing. He just can't settle in.. and then requests to go back to the trailer, and sure enough- we don't usually get back without behaviors- him screaming, starting to hit/kick, etc. So not quite the pleasant beach experience most have. But no what, we're here! Yeah- victory- even if we can't now leave our campsite. Oh we've tried, many different types of things- I won't even begin to tell you when we went to the tide pools- I"m still a little traumatized by the whole experience- lots of crying, screaming- he was so absolutely terrified, thought we were all going to die, just so much. Of course I did take pictures of it and also video taped- because only my family does this happen. Things that are supposed to be fun, great family outings, activities, whatever you want to call it- NEVER HAPPENS FOR THIS FAMILY! But that's okay- we have come to the conclusion there are just things that aren't going to happen, things that are just too much for him (and let me tell you, the girls were not much better on that experience- lots of sensory overload happening). But just like at home, we do a lot of divide and conquer, divide and go have experiences, divide and have fun. That's really the only way to do things within our family. So we do. The girls and I go to the beach a lot, my husband loves to take Megan on long bike rides to get ice cream, we do crafts, we play baseball, we cook all our meals over the campfire- including pancakes. So we do give our kids a good fun experience. But what's the point of an experience, if the child just can't tolerate it. So we meet him where he is, we hope to bring him out a bit (literally out of this little box world), and allow him to have positive experiences away from our house, at the beach. And some would say, well then you're just stuck there. But I say, heck yeah- stuck at the beach- fine! It's actually quite liberating knowing you aren't going to go anywhere- just hang out, have fun, play with your kids, get tuned into the family- get tuned into nature. Yes sir, fine with me. So back to his transition- 3 days pass, one day a little better then the day before (at least we hope so), and then day 4 comes, and we notice, he's off playing, he's off climbing, he's digging giant holes in the sand at the campground (not much better proprioceptive activity, right?), wanting to engage, being patient, sleeping better, and overall calmer, more focused, and smiling a LOT!! LOVE THIS PART!!! And mind you, when we are there, he eats, oatmeal, cereal, and not much else. To expand his food while there- is just too much to ask- but that is fine by us- I have what he wants, he's good to go! Sometimes he'll eat grapes or other snack foods, like rice chips (always salty crunchy- again very helpful regulating things). So now we get to really enjoy our trip- my husband and I will typically get to drink a glass of wine or have a beer by the campfire, this trip in celebration of our wedding anniversary coming up we had campfire mimosa's- (like they say, everything tastes better camping, right? :) )... so we simply exist, enjoy, smile, laugh and capture the memories. It's wonderful. Then for the next 1 1/2 days- we have this bliss. Then after night 5, day 6- IT'S TRANSITION TIME AGAIN!.. we head home- We have to pack things up, get the trailer back together for towing, drive 2 hours (and hope there is no traffic) and head home. This trip was quite a good travel home- he slept a lot- yeah! That certainly makes for a more pleasant drive home. Then we arrive home and it's unpacking time- laundry (lots and lots of laundry) and cleaning out the trailer to put back in storage for our next trip- whenever that will be. But I will post one more picture, this is Ty 20 minutes after arriving home, after sleeping almost the entire way in the car.... because leaving home, no matter what is just exhausting to him- and the fact that he just falls asleep, well considering the alternative- it's beautiful- like a newborn baby.

Okay, so we left the bubble... went to our other paradise- the beach...

Just got back from our beach trip- too tired from all the laundry, house cleaning that didn't get done before we left, the toys everywhere, it's hot, it's been humid- and we are dealing with transitions and behaviors associated with it now that we are home again. I will post more about our trip when I have the energy- and all the laundry done. It's exhausting trying to go- and it's exhausting being there and it's exhausting coming home. Okay, done whining about it- off to finish laundry. Boy do I have some good stories to tell you all! Stay tuned :)

so, now it be would nice to go ANYWHERE!!

So, of course my latest creation is the magic bullet to help my son be able to leave our home, right :) . Not that we haven't tried MANY MANY things before- we have transition routines. Transition items, count down to leaving visuals, focused activity items, crunchy food items, animals, so many things tried, and tried again. But the overall day to day transition of leaving our house, getting in the car is still too much and not worth the behavioral over reaction that becomes a very unsafe environment for driving in the car. So I am ALWAYS trying to come up with SOMETHING that can help him, me, our family, the entire situation. So, now what does everyone think?? My girls, who also both suffer from sensory issues but have better coping skills (usually) love them... and as I sit here typing, I have a weighted snake buddy on my neck- to help provide calmness as I have my own sensory issues (my apples don't fall that far from the family tree- between myself and my husband, definitely sensory issues. ) So, when we absolutely have to leave the home, go out in the world, I hope I am able to bribe him enough to put it on his lap, or wear it on his neck along with all of our other strategies to help relieve his anxiety and provide some calmness and be able to get through the car ride. As school approaches, it's a lot less do-able to stay in our bubble. That's why I love summer time so much. It simply helps him. I know I know, many would say - that's no way to live. But you know what, when you have a child with special needs, both medically, psychologically, and deal with what we deal with, priorities change, your life has to change, and we do what our son can handle. Even our behaviorists have asked to make outings that are only absolutely necessary. Because you can't even teach him coping skills, when all you deal with is major overreaction behaviors that are dangerous and scary at times- he doesn't know how else to communicate except using these behaviors- it's called fight or flight- and to him, he is in danger. And we will continue to work on helping him access coping skills, communication skills, functional language skills. But until he's better able to do this, we have to meet him where he is. That's our bubble.

my latest creation...... Snake Buddies: weighted sensory friend you can take ANYWHERE!!!!

Snake Buddies: A weighted sensory friend you can take ANYWHERE. Made with socks, beans and love. It can be worn around the neck or simply placed on the lap to help provide calmness to those with sensory issues. If you would like one, message me.

phase 2 of my deck.... complete...

So deck is complete except a few minor details: ran out of stain, so just need to finish the staining and I have to finish the step- and trim... but here is a look at the almost finished deck... I love how 2/3 of it is made with reclaimed lumber. Now, some of you may not know what reclaimed lumber means. Sometimes you have to buy reclaimed lumber- lumber used and salvaged for a new use..... however- I have received all my reclaimed lumber FREE!!! Yes, FREE... quite my little find- and really I tailored the design and structure of my deck to utilize the pieces I had- most were 4ft 2x4's.... so those are all the joists- and then to make it fun and funky- why be traditional... I mixed in the use of the reclaimed lumber along with the store bought lumber. And I intentionally made it obvious. The reclaimed lumber is in a pattern with mismatched seams, not perfect, a little funky, because the boards were all a little different. The new lumber I left as 2x4x12's and 2x6x12's... so full length boards- no seams. I love the way the stain (red oak) has been absorbed into both the new wood and the old wood- it really gives it an old deck feeling, but with new deck support- this thing is sturdy and not moving! I"ll post complete project pictures when I am able. But I have to say a little pat on my back- I did the entire thing by myself. Not that my husband wouldn't have helped, but in our circumstances- both of us distracted usually means chaos will occur in our household- so I really do consider this was a respite project- and I loved when Ty or the girls wanted to participate, even if it was minimal. Also, my favorite quote from my husband regarding the deck, as we sat on it for the first time, with a camp fire going in the fire pit, drinking a nice glass of wine, "Our yard is really relaxing and feels to calm and comfortable".... a very high compliment from my hubby! It meant a lot and made my heart smile!

Managing caregiver stress.......... found this to be a good resource:

http://www.thespeciallife.com/stress.html#axzz2bOpXzJvG from the special life: Managing Caregiver Stress Just being a parent brings its own level of stress and anxiety. But, if you have a special need child, then it goes without saying that your entire family deals with additional pressure in your daily life, and caregiver stress is a whole different problem to deal with. Everything is just a little bit more difficult. And what often goes unnoticed is that difficulties aren’t just experienced by the child with the disability, but by everyone in the household. Yes, obviously the person with the disability has the most to deal with. And they deserve all of the support they can get. But caregivers need support too. We know that just getting through the day is usually exhausting. After a few years of constant extra effort, you’re likely to find yourself totally exhausted, not just physically, but also emotionally, mentally and spiritually. You’re not alone! One of the hardest things to come to terms with is the realization that it isn’t a temporary situation that you’re dealing with. Most of us are able to draw on extra reserves of strength to deal with calamities in our lives. And somehow, we manage to get through it. But, when the situation is ongoing, we need to consider an ongoing support process to be able to replenish our reserves, so that we’re able to deal with all of the additional tasks and stresses placed upon us. Caregiver stress management is something that the whole family needs to be aware of. Parents are especially in need, since they set the tone for the whole family. Read more: Manage your stress from dealing with special needs http://www.thespeciallife.com/stress.html#ixzz2bPoOF5wv

oh he almost cracked, but then crashed........ and a little about dogs!

Well, my second day in Paradise was almost interrupted by frustration and anger and simply "fighting over a sister". Yes, I have 2 children who continually fight over Sarah's attention. UGh.. so frustrating for me- because in the end Ty gets so worked up about it- he literally say's things like "Megan stole Sarah from me"...and breaks down into tears, sobbing, weeping in fetal position; as if Sarah has no choice in the matter of who she wants to play with or what she wants to play. In fact, she's the kid who say's things like "guys guys, can't we all just play nicely together!" ahhhh music to my sensitive ears- but the answer 91/2 times out of 10 is, no they can't :( -When simply asked, she wanted to play with Megan and not Ty. But that's too hard for him to process when he's just on the verge of falling asleep. I knew something would set him off, even just a little bit- before he would crash. So this was the "setting" event, aka antecedent for all those ABA language folks, he tried to get physical, he threw something, I prompted him to take 1 minute- he went without complaint in the dog bed with the dogs- fast asleep probably in less then 2 minutes! Pretty typical- just like a toddler... cranky behavior then crash! (Day's like this are piece of cake... it's the other days that behavior is far more severe that is hard and more of the norm). But for today, even with 2 behaviorists here, he showed quite a bit of flexibility. He and I baked cookies after they left, and he had lots of smiles. Pin this one to the memory bank! So, now I have some clean up to do - which I don't mind when the rest of the day has gone well.... he and I made Peanut Butter with Chocolate sprinkles. They are so tasty- and naturally gluten and dairy free... we have no peanut allergies here- thank goodness.... that is a source of protein that my children survive on. Hungry, have a peanut butter pop- aka a spoon of peanut butter with bakery sprinkles on top. Hmm good and a quick protein boost! But these cookies are also yummy- I'll post the recipe on pinterst under Gluten/Dairy free ideas. And it's one of my favorite activities to do with my little guy. He loves to bake and so do I..... so it's a nice shared interest. He usually likes to bake things for the dogs... and he's very quick to turn a baking idea into a treat for the dogs... hmm which is fine- but wow do we waste a lot doing that. And especially not my expensive gluten free mixes- no way- they are not cheap and the dogs do not appreciate them enough! Plus a lot goes un used because he makes so much. We love making special dog biscuits, or dog treats... Ty's favorite is literally peanut butter with dog kibble in it... (that's his no bake recipe). But trust me, you don't really want to eat the peanut butter once he's done with it- the whole oops got dog food in the peanut butter thing is kind of gross, wouldn't you say? But I love that he wants to do special things for the dogs. That's 'HIS' connection to the world. Literally... he speaks through the dogs a lot. For example, he'll say things like "Ollie doesn't like that noise, or Ollie's tummy hurts".... or "that scare Ollie" (btw Ollie is Oliver our sweet kind little Chihuahua Terrier mix that is 12 lbs... he is the greatest dog for Ty- so loving, patient, and literally let's Ty do anything. Ty loves to dress him up, bathe with him, and Ty literally used Oliver to (caution here's that word again) REGULATE.... he grooms Oliver, he strokes Olivers ears, he picks his toes, and literally lays with Oliver to nap. Not much else is as sweet as this... Oliver is the most amazing dog for Ty. Now, I didn't say he was the perfect dog. Almost, but not quite... one little thing about Oliver- he gets car sick- real bad!!! Even just going 1/4 mile around the corner- ugh... we almost thought Oliver was the perfect companion service dog for so many reasons... but he throws up in the car, then Ty wants to throw up in the car... quite a chain effect. But it taught us a lot about Ty and how Ty uses animals, loves animals, but really truly connects to them. In fact, this is our connection to him. We can't really sit around like other families and just talk. But we can if we are talking only about the dogs. Look how cute Oliver is being, look at little Sadie (she's our other little Chihuahua Pekinese mix- also 12lbs, and way more DIVA like and feisty- a great dog, but she's sort of boss). Our family can all connect around the dogs. It's the most beautiful thing we experience. So this leads me to another post some time soon- when our family has been accepted into the Canine Companions for Independence service dog program. Well, I should say Ty has, but since he's just a kid, it's really an entire family thing and I will be the actual facilitator as they call it. Yes, my son will ultimately we getting a service dog- that will be a beautiful, kind, loving, helpful dog- that can go EVERYWHERE with Ty. Now I know this is alot of pressure for this dog- but we are really banking on the dogs ability to help relieve some anxiety and help keep a focus for Ty when he's out in the external world - outside his home environment - his safe zone.... we've seen it happen with Oliver. It really helps Ty to be calm and focused and regulate. Problem is Oliver is a little chihuahua who gets car sick and can't just go into any place. But service dogs.... well trained dogs to help relieve his anxiety, help him regulate (by the dogs physical presence and by Ty petting, hugging, staying focused on the dog..)... ohhhh it was a long process, but if there is anyone who would benefit from a service companion- it's my son! So many studies showing the positive effects of animals with kids on the spectrum, and the positive benefits and independence that service companions can bring to a kid (who will grow up to be an adult) on the spectrum. And for a kid who just can't handle the external environment, who struggles with so many regulatory problems, who regularly has to go the hospital for bowel disimpaction and other medical issues..... wow I can only imagine how much a service companion can help him get through all these life events. And in reality- some day, he will be an adult. He's already 9 and lacks so much practical life skills, is developmentally a 3 1/2 year old, and is so smart, and suffers so much day to day. A service companion will only enhance his abilities, increase his independence (we're hoping to literally shift dependence he has on myself and my husband for regulating (called co-regulating) to the service companion dog which would be more a big deal! I'll post more about this, especially as we learn more- we are just waiting "to be called" right now- made it through all the interviews, background check supports, the entire list of requirements- down to receiving the beautiful letter that Ty has been accepted! That was a joyful day as you can imagine. But we wait, and look forward to this experience. And Ty can't wait!

quite a crafty day.......

I love days like this. A day filled with my kids wanting to be engaged with me by an activity- First, both yesterday and today are days where no behaviorists have come over- a little bit of a vacation for me. Love having them for so many reasons, but 5 times a week for 4 hours- well, someone in your house and things are just different. The dynamic is different, schedule is different, more challenging day for Ty. Lots of reasons. But a day like today- well, this is why I like Summer. First, I was greeted in bed at 7:15am with Hot Cocoa made by Ty. Very sweet- and you should have seen how chocolatey it was... I smiled. He then told me don't worry mom, I cleaned it up. And even if he didn't, gosh I"m proud of him for even trying. Now, he really wanted me to drink it right then, but I persuaded him to let me get out of bed first. So, I'll take that kind of wake up call any day, compared to our usual getting hit, kicked, jumped on, darts shot at from a nerf gun... always a rough start. So, very pleased and smiled as I got out of bed. What does today have in store for me, I wondered? There was no fighting, no behaviors, even one time, he politely asked Sarah to not make so much noise. AHHH sweet words coming from my little guy! He took his usual morning nap. I was getting a craft ready for those that wanted to spend time with me (that's how I always phrase things- who wants to come do something fun with mommy!!!). The girls were takers- Ty wasn't interested. I'll post later- or you can see the idea on my pinterest. We made Hedgehog Leaf craft- we also made hedgehogs with paint and forks. This was really cool- painting with forks- turned out good! Well, Ty kind of walked around, aimlessly, not sure what to do. Kept saying, he was bored, but didn't want to take me up on any my suggestions. So when the girls and I were done with our hedgehog crafts, I invited Ty to make the fountain pond he started yesterday. He gets quite obsessed about certain things- and this is one of them- making a pond, making a fountain- so I try to engage it and channel it properly- he has very big ideas sometimes. He has literally dug a hole in the garden and stuck tin foil in it and filled it up- creative, but I"m a little tired of all the holes he's dug- trying to build a new pond. So, I let him use the little mini pond pump I got for the fountain I made for my husband's birthday (it got kind of taken apart during our deck construction- which I"m okay with - I can rebuilt another time). I figure, Ty wants to engage in an activity with me- I was able to channel him a bit, meaning he was a little bit flexible today- yeah! So he was out in the backyard, digging in an area by the new deck that was a perfectly good place to just dig. He wanted to make it be a stream that went all the way under the deck to the other side of the yard, but I convinced him to start small and see if this works first. Distraction worked. So, we built a mini pond with the fountain pump flowing water over rocks. Very nice- he's off to the next thing. And he seems a little tired today, maybe it's a "down mood" day, we just never quite know what mood it will be. Over the weekend, he was what we call "jacked up"... a little manic, bouncing off the walls, very distracted by everything- no focus. (he also has ADHD)....and he's very hard to keep up with on those days. Even if he's in a good mood- wow he really has no end to his energy and ideas.... and is like the energizer bunny that just keeps going and going and going. But starting yesterday, and definitely today- a little calmer, more focused, kinder, helpful, patient, flexible, patient, oh an did I say patient. So, we had lunch (the 67th smoothie this summer - or however many days they've been out of school.... it's a smoothie everyday- could be worse, but I do make them pretty good!)So, after lunch- he falls asleep again (this is very typical for him. He always takes at least one nap a day, and many days two). We've learned this is a form of regulation. This is the only way he really knows how to self regulate. By sleeping. And it does help him a lot- even on a tough day, he will nap with our dogs, and when he wakes up, he can be in a much better mood. So while he slept, the girls and I got a chance to do another craft- this time it was Salt Dough Shell Fossils. This was cool- we've done salt dough many times- so this was a nice new twist - I have lots of seashells- and they turned out really cool. Pictures to come later.... They are baking right now. So when we are about done, Ty wakes up. Now this could have gone many different ways- no predicting his response to us doing an activity without him (even if he didn't want to do it..) But he was okay with it, I asked if he wanted to do another craft- but no, maybe tomorrow. Okay, maybe tomorrow- really- ahhh nice moment once again. No overreaction, no problem behaviors, no screaming. (Well, we had one little thing- he broke one of the fossils (unfortunately Sarah's) to give to the dogs to chew on. She was pretty upset, but he politely said he was sorry (after I prompted him). The fact that he followed my prompt and didn't over react to that- again, success!! So, the day of course is not over- but for me- these are the kind of summer days that I love. Being crafty with my kids- even if it's not all together- at least I got to spend a little time with each- which on a typical day is very difficult to achieve. And well, as I type this now- my husband is just getting home- transition time is happening. And I hear screaming from Sarah because Ty is bugging her intentionally, Ty is locking all the doors so Megan can't go to a bathroom. So, our evening routine will begin- and I"m off with the girls while Brian and Ty play ball, and that will help us all get through the transition. At least until dinner and flush time. But again, a smile on my face, and a heart filled with happiness today!

My little chef.....

Well, not the best start to a weekend. But today, Sunday- Daddy and Megan off grocery shopping (that's their Sunday thing), I was working in the back yard finishing up the back deck (post pictures later)and I knew he was up to something. He was awfully quiet. Which is good, sometimes, but decided to check in on him anyway. He has been in a good mood (ever since he woke up from his morning nap.... before that- well I was pounced, and almost literally dragged out of bed.. just a little off at first). So I walked into the kitchen- and I see all the cupboards open, the step stool next to the counter, things taken out of the bottom cabinets and laying on the floor- and there's Ty, standing on the stool, putting tomatoes and bell peppers he cut into a mini food processor- trying to figure out why it won't turn on. He turns to me and smiles and say's "I'm making Daddy salsa". Well, yep, he is- why not. But he is having trouble with food processor- it won't turn on. He simply asks me why and can I help him. Well, sure- I even ask him to put the things that were on the floor back in the cupboard and then we'll figure this out. HE DID! Yeah. So I pretty much knew why it wouldn't turn on- if it's not properly put and secured on it won't turn on. I explained this is a safety measure and that's why it's important to ask for help. So he begins the chopping- he adds green onions we grew from our scrap green onions, and I add some lemon juice and salt and pepper. All I can say is WOW! It was so good. Now he never actually likes to eat the stuff he makes for some reason. In fact, he said it looked weird to him and it was bubbly. That's from the mixing of course- so he was now done- and off he went. I encouraged him to try it with a chip- but he didn't want to. He was now on to the next thing- he wanted to make green salsa. But I luckily distracted him enough to move past that and we'll make that later today. But Sarah and I sat there munching on chips and his homemade salsa- and I just think to myself- again here is an amazing gift he has. Cooking- he loves to do it- he loves to make things (when he's in a really really good mood) for me and Brian. He doesn't usually allow the girls to have any of what he's made- it's for mommy and daddy he always says. And it's always good- he really has an amazing gift for putting flavors together- reading recipes (as he doesn't read books- but he'll read sports scores and recipe books to make something.) Well, fine with me! This is one of those moments... the moment that he is wanting to do something for someone else, he's excited about it, and he's being so creative. Now these are the times that we just cherish- and soak in- and remember that he's just a little boy- who struggles with so much and tries so hard- when he's able. Some days, he just can't. It's too hard- but some moments he can and he smiles and enjoys the moment too! Now that's an awesome moment- a shared moment! And a very proud mommy moment!

the quick switch.....

well, just a little venting time here. I guess this is why I've chosen this format- just ugh today! But not the entire day- in fact, I thought for the most part the day was pretty good, this week has been pretty good- at least by my standards (only a little kicked, and only a few things thrown my way. But no restraint for my little guy. That's a good day in my book. But even a little better then that the last few days. Even responding to minimal challenges as we call them. The rest of the world calls it, asking your kids to do something, ie pick up a toy left out, wash your hands before getting food (esp since you were outside playing basketball and they are black with dirt), please just ASK for this or that. We call this using his functional language- which he doesn't have very much of. He loves to state a problem, but between problem solving and using his functional language to express it, well that's why he has a lot of meltdowns, pretty much like a 2 year old who cannot express him or herself. Anyway, back to a pretty descent day- until I asked him to pick up 3 small toys he left on the lawn (as I knew today was a day I could ask him to do that) There are those days that I wouldn't dare as the cost of the reaction is too high. This is what we call walking on egg shells a lot of the time. But even our professional team has recognized the difference in my son- and his multiple issues play a large part into how we approach him and his ABA. But, to keep tonight simple- he switched on me, he switched fast and I really wasn't expecting it- and then he flipped over the toy chest, flipped over our exercise bike, and threw cups of water on the floor. Sigh! Really, that kind of response- so we do our behavior plan- and luckily he walked away from it all rather then engaging in further behavior- which means he's calming down- we don't dare engage him in anyway just after this kind of behavior- and in fact, I think today was a day I can then request him to clean up the water, put back the toy trunk and the exercise bike. Well, he did- okay- good response. I'm a good mom now! (that's kind of how it feels when you have no control over your child what so ever... ) But then we have dinner- and for some reason he starts crying and weeping because he thought Megan made a face at him- well maybe she did, who knows, but again- that response. Ugh.... so I can see he's really struggling with modulating his emotions. I can see he's having a difficult time. I know if he allows me to hug him very tight, then maybe that will help even for a little bit. So I do, I hug, and I hug him tight- where my arms are about to break off!!! But he calms down- and he allowed me to give him this input and calm him down. Yeah! So now dinner is served, and he gets this great idea of what he wants for dessert, and even better if he goes on the potty right after dinner, so okay! He's motivated- until I don't know what happened, maybe a comet hit our house and struck him in the head and we didn't know it- but he flips again. Are you kind of getting the picture now- up and down up and down- which emotion shall it be... hmmm and everyone keep up please as I cannot regulate myself. Well, this is where things are hard for me- this up and down up and down, switch here switch there- what's it gonna be, are you made, angry, sad, frustrated, happy, gleeful, what!!!!! ugh- I can't keep up. I'm tired and now I have to "clean up the mess" created by your little spat and we have to get you on the potty, and I have to do dishes. Oh yeah, this reminds me- in an earlier post- I mention all my special duties, mom, nurse, doctor, behaviorist, etc, but oh yeah- I'm a house cleaner, a gardener, a cook, a chaperone, a family organizer/planner. I"m sure I'll think of more later. So back to my frustration with his up and down.... and mind you- this is all in the time frame from 6:30 to oh maybe 7:15.... tiring isn't it? So, finally he gets on the potty after a little song and dance, and I can now finish the rest of the chores, including night time meds, dishes, feeding the scraps to the chickens (oh yes, we have chickens- I will post another time on our animal house!). So, he's now calm, in his jammies, teeth brushed- yeah! I finally showered- (I have to shower at night, as I cannot leave the children unattended in the morning to shower- made that mistake one too many times. Now of course it's not the girls who struggle with being unsupervised- my little guy pretty much needs supervision 23 out of 24 hours... otherwise he's doing something he shouldn't, doing something to someone else, kind of like a toddler. So, that was my evening tonight- and it's really hard some days to go through the emotional roller coaster- I can't keep up and damn it's exhausting! Well, as I always know tomorrow will be a new day. Tomorrow can bring anything- but there is a chance in my world that it will be a fairly better day- as this is the first week (after our bubble was leaking from our pick up excursion 2 weeks ago - that's the 2 x I had to pick Megan up from VBS. Just 2 x, and 2 weeks later we are still just starting to get our groove back. So thanks for the vent- as for some reason (maybe because thursday) I"m tired! And I realized- it's AUGUST FIRST! Oh my- seriously, August- already. And as Brian and I were discussing calendar for the month- (via email while he's at work, because we don't really get to talk much once he's home) we have junior high registration, First grade meet and greet, a few appointments, and it all conflicts with his schedule. Oh crap- how am I going to pull this off at the end of the month- to get Megan ready for Jr. High- (kind of a big deal change of school, change of so many things), and luckily for my littlest, same teacher, same classroom, same school, but she's now a first grader. Again, kind of a big deal. She'll be spending all day at school, eating lunch at school, you all remember- kindergarten is pretty much like preschool. But first grade, well, that's the transition year- I remember with my oldest- wow serious adjustment- and Sarah is not much of a morning person- she is lovin' summer, not having to get up , and eat breakfast right away- taking her time- it's like pulling teeth to get her to get ready for school- even though she loves school. Just not that early! Anyway- don't know how August has come to quickly- where has the summer gone? I'm worried about things. I had a goal that I wanted to be able to take Sarah to school this fall- as last year- that didn't happen. Between Ty either taking a morning nap at that time of a transition of everyone leaving the house, or him not cooperating and then the girls were late to school- we found it best to have Brian take them to school. It's only 1/4 mile- no big deal for most- it's the longest 1/4 mile- I did have to pick up Sarah- and that was about all that Ty could barely handle. And there were many times I had to call my husband because he refused to get in the car- thank goodness he works close by. But maybe this is giving you a better picture of my world. Even when I have to be somewhere- well, never know if someone will cooperate and physically get in the car- even though it was something we did everyday- it was still never routine. We have behaviorist with us- they would come with us- as that is a goal of his transitioning into and out of the car without over reaction- ugh..... I rarely drove that 1/4 mile home without having to pull over to tell him what was expected while we are in the car- he tends to get very anxious, nervous, serious sensory overload- anyone talking- he screams at, anyone do anything he doesn't like- well that's a very long 1/4 mile. I really don't like to be a negative nelly. In fact, I try to always have my kids see the positive things, the wonderful things of that moment, look a butterfly in our broccoli, listen, did you hear that circada? And of course I wouldn't complain about these things to them. However, unfortunately (here's a confession) I take out my frustration on them- even when they are just doing typical kid stuff. But you know, sometimes that one noise, that -you didn't listen on the 2nd time I asked you to do something, the please be quiet as your brother is sleeping and it's been a rough morning. Yep, guilty here! I hate that too- but I also admit my wrong doing and apologize and just tell them, mommy has bad days too. Mommy sometimes doesn't handle a situation as good as I should have- mommy didn't use her words to express my frustration. Or I'm not frustrated with you, so I"m sorry for raising my voice, or getting upset... blah blah blah... Hey, I'm a mom who is known in my house to put herself in time out!!! Well, I feel a little has come off my shoulders. I think we have a lot going on, and a lot coming up- and I'm really not ready for the changes - as it just means more adjustment time - which usually means more behaviors . As you see, we try to keep a bubble. But in reality- it's damn near impossible. And even though we keep things to a "absolute have to do" , soon that will come up everyday- and the bubble will once again have its leaks. So how will it affect him?