Day 19. Dino Game Night

Monopoly anyone?

Day 18. Dino Movie Night.

Talk about 3D! 

Day 17. Are You Ready For Some Football?!

Ready. Set. Hut!

Day 16. Window Frosted

Day 14. Dino Craft

Looks like the Magic Dino's tried Pinterest and made TMNT ornaments for the kids. 

Day 15. Road Rally

Magic Dino's race it up with a road rally. Don't mind the dead plant in the middle of the track.

Day 13. Puppy Love

Day 12. Rapunzel, let down your Dino hair.

Day 11. Dino Dude Looks Like A Lady!

Makeovers are so fun! 

Day 10. Harry Potter Dino Joke

Even the Dino's have a scence of humor with each other. 

Day 9 ROCKY prehistoric.

The day a Dino stepped in for an injured Robot the crowd started taking bets.

Day 8. PINKS!

Tonight it's PINKS ALL OUT style with the Dino's. 

Day 7

The gunny sack race is on! The T-Rex is in the lead because the longneck had a fall! 

Day 6. Mario!

The sneaky dinosaurs captured the princess. Mario unleashed a mob to her rescue. 

Day 5 Burn Baby Burn! Dino inferno!

"The roof. The roof. The roof is on fire!" That's what I kept hearing while seeing what the Magic Dinos had done last night. 

Dino's and Christmas Magic

The past few years I've watched many of my friends have a lot of fun with their kids and Elf On The Shelf. Heck, I even have a board on Pinterest of ideas if I were to ever get the doll. Notice, I haven't actually gotten the doll. Why? I've talked to my kids in the past and we've seen them in the stores, but my kids just didn't get the idea of it. They were like, Yeah, it's a toy mom moves around. Hello?!?! We are looking at it in the box and seeing you buy it. So, we never purchased one.

I still wanted to do something fun though and this got me thinking. Why not use something we already have? Need I add the toy is $30 and that could go toward an actual present. I read a link on Facebook that a family staged dinosaurs for the month of November to show their kids there is imagination. LIGHT BULB! My kids have dinosaurs! And one night I started it.

To see how they would react, this is what they woke up to.

The letter pretty much says so elves were spying on them and some of their magic they carry with them to get them back and fourth from the North Pole had accidently spilled on them, OOPPS! Now they come alive while everyone sleeps and reports back to Santa.

 It worked! They were SO excited and couldn't stop talking about these Magic Dino's constantly until I dropped them off at school. So, naturally this isn't normal and like any business public relations has to clean up, so Santa sent them a letter explaining more in detail what was going on.

When They came home they found a scroll waiting on the driveway. The squeals as they brought this in the house and read it were deafening. Now I was committed.

This is what they found the next few mornings.

Day 2

Dino workout turned into a silly game of drop the marshmallow in Rex's mouth.

 

 

Day 3

Dino dress up tea party!

 

 

Day 4

The Chair! Hit him with the chair! Wow! Dino's taking on The Undertaker?!?!

 

This has been super fun and the kids are having a blast. After they find the dino's they play and play and play with them in the set ups. I found my two year old, Riot, holding a few of the dinosaurs the other day yelling, "Wake up! Play wif me!" 

Now I just need to think up about 20 more scenes. Hope you all enjoy.





 

 

Living in a Small Town

This past week we had an other assesment about our children who have disabilities. This time it was with a state affiliated office. Let me tell you, those tests are grueling because for each question there are three parts to each answer. Each child's assesment takes about two hours. 

The guy interviewing us about the assesment was kind and helpful so that did help. His office accommodating to each of the children's needs. He was understanding when Paisley got overwhelmed by something and had to dust his office with his tissues while we talked. He explained how her OCD affected her and how her having dyslexia as well as FXS and an autism spectrum fight against each other. Yet, he was amazed at how she at only 7 years old has learned to cope and self soothe to the point you can't automatically see she is affected by something.

Then it came time for Seth. We had to go into detail about his issues, especially the behavior. The aggression is our biggest concern right now. During that discussion of the assesment, I had to decide the seriousness of the behavior. The choices to pick ranged from not serious to extremely seriouse, each helping by giving definitions to each answer. The definitions were determand and on how I feel others react or how it affects the public when they see such behavior.

When I answered the first few, the gentalman stopped and looked at the scars on my arms. He then asked me to take him step by step through what typically happens and why I didn't think it was a big deal. I did what he asked and told him I didn't think it was a big deal because I deal with this everyday, some days not as big as others. But it has become normal to me. He asked me to really think about the ansewrs and pointed out the differences between what I thought the situation was and what it really was. I was saying they weren't that seriouse and at most moderately. My reasoning is because of how the public, here in Preston, reacts to Seth's meltdowns and even when he gets "violent". The definitions were, the actions are annoying, cause others to look and wounder what is going on but the disturbance doesn't stop the others from competing tasks, or on the moderate answer that Seth would need to be removed so others can go about without causing a disturbance that is distracting. And we were answering on everything else except for the times when Seth is going to school because those actions are isolated to school. 

I had to stop and really think about all of the reactions I get here in Preston, Idaho. 

My eyes filled with tears at this point. I explained that there has only been a few times where I felt, by the tests definition, that there was a serious problem with Seth in public. This community doesn't shun, make fun, or be rude to Seth. These people, in Preston, are excepting of him, his issues, and when they see him breakdown, they don't point, whisper, or say mean things. They except him for HIM! They love him. It's when we go out of the area, even as close as Logan or Pocatello, we see the difference in how others see the issues. 

Seth walks home from school, by himself. And I know if he ventures off the path of his route I will get a phone call. Our neighborhood knows that Seth's walk home from school his his one thing he does with out a parent by his side. That is his one thing he does indepenantly, as independent for him because pretty much all the houses he walks past watch out for him. 

The gentalman was stunned in a way. He couldn't believe how accepting this community is. He asked how the police react to Seth. I told him the same way. They know he isn't a danger to others, unless he is riding his bike down the highway. I didn't add that part, that can be between us. When I told him we lived here, a light went on. He said he had a few others he assessed from here and heard the same thing. He told us that is rare to find a community as a whole that accepting. We finished up the appointment by having us think of reactions in other places and at the end of the test I wanted to get back home. 

I hear others say they hate Preston. They may have their reasons and that is fine but I love it here. Yes, it is an out of the way place. I have to travel kind of far to really shop. Everyone does know what I am doing, but I also put it out there. I feel safe here. I can let my disabled children outside to play. And, when Seth does run off, it happends, I don't get judged as being a neglectful parent for letting my kid get out of my sight. I mean, think about it if you just thought, "wait, I haven't lost my child and needed to call the cops before. That is bad parenting." 

Do you have to keep a constant eye on your kids? No, not like what I am talking about. You can leave the room and go to the bathroom, throw in a batch of laundry, load the dishwasher, take a shower and not worry your child will walk out of the house and into the road. Your child might know that is dangerouse. Mine doesn't. I have to keep a constant eye and it's not humanly possible. I have to sleep, shower, and take bathroom breaks too. It's during those times they would get out and I wouldn't know. Thankfully, we only had to call the police twice. Everything turned out to be okay, and we were lucky. Lucky, that the police knew us and understand the situation. That is because this is an awesome place to live. I have a little joke  I always tell someone that asks how long I've lived here and it is, I was born, raised, and hopefully will die here. I love it here. 

Just Do It

When people see me in public it is easy to assume that everything is fine. Sometimes it is, other times not so much, but I was raised to be a lady and not get everyone to board my pity train. On those harder days it is hard to keep calm and smile, but it is possible. Today and yesterday were one of those harder days. 

I am just going to say it right out, Autism freaking sucks! It is a blessing at the same time though. One of those double edged swords that cut deep either way you slice it. Rewarding at times, helping me grow as a parent and fellow man (or woman to be politically correct). At times it's no big deal to have multiple children with disabilities. It is my norm and to use another cliché, it has gotten to be old hat. Other times, like this week, it is super hard, exhausting, and the emotional toll is indescribable. 

I have dealt with this severe autism for 13 years, I am tired. I haven't had more than 4 hours of sleep a night either in that Same amount of time. My youngest child is now 2 and I see the same behaviors in him as my oldest. So, yes, as I get asked all the time, he will be just like Seth. The good and the hard. Don't say to me now, "oh, you poor thing. I am sorry." Because, I am not. In a way, I get a do over. I know what works and what doesn't. I can help the issues in the early stages.

With my oldest, I am still learning. His stages are still new to me. Right now the strict routine we've had in play for the past decade seems to not be working any more. It has been suggested that before school he not be allowed to have anything that isn't school related. No television, iPad, DVDs, computer, so he doesn't feel like we are taking something away and school is the punishment making the transition from home o school easier. Sounds pretty simple right? Yeah, it's not. Maybe I am just lazy. He wakes up at 5am, 6, if I am lucky and has to be to school by 8. That is two hour of fighting him not to play with anything, because really, anything he does will feel like it is being taken away. Plus, I have three other children to get ready for school as well. And remember, two others also have their issues to work with.

 My one child that doesn't have a label has grown to be an amazing help. This boy sees something the others need help with and he is on it in the morning. It helps we have a listed schedule so each one can see what is next. We use a toke economy in our house and it is what has worked for the past 10 years. The kids bust their hides to get the list done, almost like a race, and look forward to that reward of down time before school on the iPad or what not. Maybe I should change it to loading them up with sweets and letting them burn it off at school, kidding.

Well, this no fun things during down time is dang near impossible. I am constantly reinforcing and redirecting. I am always doing two things at once. Stearing one kid away from this and helping another one do something else. I'm the only parent at home from 6am to 5pm. (Right now he's helping my son's football team and practice goes until 7:30pm) My husband works extremely hard to provide so I can help our children. He can't just come home to help me carry my teenager into school, and my husband is a type of person that has to do backbreaking type work. He just doesn't feel happy if he isn't getting dirty at work. Maybe his parents shouldn't have let him play in the sandpile when he was a kid. Joking again. But seriously, I am handling this on my own. I'm the one who get the multiple phone calls from my oldest child's teacher everyday, drag him out of the truck, kicking and screaming every morning. I help the kids do their homework, cook dinner, clean house, and set out the clothes for the next day and ready the schedule to start all over again by myself. 

So, this one more thing I am being asked to do now and not let my son have anything not school related is hard. Almost the straw to break my back. I don't know how other moms, especially ones with mulitble disabled children, do it. My hat is off to you. You are rock stars! 

DING!

Summer vacation was almost at an end and I had been growing braver at letting Seth have more independence with going around the neighborhood. Usually, I would be in the front yard pulling weeds or what not but be able to keep a close eye on him. But, this time I stayed inside the house and let him go out... Little did he know, I was watching him from the upstairs windows while he ventured between neighboring yards. An hour or so past and I called him back in.

Seth didn't answer, nor could I hear his humming. Great, I take my eyes off of him for less than five minutes and he is gone. I open my garage door and thought, hmmm, maybe he is just around the corner and I don't have to drive the car to get him.

Barefooted, I ease my way to the corner to look for him. Nope. Not there. On my way back, I saw the little stinker sneak into the open garage and get on his bike. I met him in the drive way and he looked at me with the biggest puppy dog eyes, "Please?"

Awh! I am such a softy! I let him ride it around. He had gotten better and usually stayed on our street and in the culdisac. USUALLY. I got distracted by another one of my kids that needed a diaper change. It hadn't been more than a few minutes, I mean how long does it take to change a messy bum? When my phone rings and it was a teacher at the middle school telling me Seth is ridding his bike down the street.

What?!?! Apparently the time it takes to get to the school from my house on a bike is the same amount as wiping a baby's bum! I loaded the kids in the truck and headed out to pick up Seth and his bike.  I guess Seth remembered that ridding down the highway brought the cops because he stayed on the side streets. Thank heavens! Well, Seth wanted to ride the bike home so I followed along side ( more of a racing style with me revving the engine. Yeah, I am a dork like that) all the way back to our street.

Seth was having a blast. I noticed sweat dripping down the side of his face so I back off to let him slow down and not over heat himself. Wrong thing to do! He got mad, flipped his bike around, and took off at full speed. Let me tell you those three wheeled bikes can haul!

I turned around and sped up about three or four houses in front of him. I positioned the truck so it would cut him off and he would have to stop. I got out of the truck and waited for him. Seth was coming at me full speed. He was now only 2 houses away. I yelled out, "Seth, stop or you will hit the truck."

Seth's eyes are huge at this point and I guess seeing the truck parked sideways across the road made him freeze because this kid wasn't braking. All of a sudden, CRASH. The bike stopped.

Seth was okay, the bike was okay. The truck..... Not okay.

I loaded the bike in the bed of the truck and walked back to Seth who starined at the driver door and front side panel. He looked at me then points to the truck. "Dad! Mad!"

There was a huge scratch down the side. I let him know, he wouldn't get into trouble, I would. He smiledand said, "okay."  Hey, thanks for having my back kiddo.

So, I need some touch up paint, because these scratches weren't here when Jess left for work.

Reality Assessments

Sometimes I forget my kids have FXS. It seems like my family lives in this little bubble around our house and our everyday routines become the norm. I've come so accustomed to the signs of over stimulants that it's second nature and I redirect the little person having the meltdown without knowing it. The knowledge of the abilities of my kids that I research and educate myself with is never ending. This is my normal.

In our world routine is key and schedules are kept so a 7 year old girl doesn't breakdown and cry because her hair isn't styled any later than a certain time every day. A two year old has to nap for so long or he turns into gremlin. A preteen has to be fed, properly clothed in the right textures, and relaxed or the rest of the day is shot by him not cooperating and getting violent. Lunch is served everyday at 11:00 and dinner is by 6:00. Each child has their own therapy routines, goal deadlines, and ways we've incorporated each developmental progression into everyday activity. Errands are done before noon and after school activities are talked about the night before so everyone is ready for the run arounds and nobody gets upset. This is my life.

I don't go to lunch dates and rarely venture to a girls night out. Play dates are far and in-between that I am not hearing what the average child's benchmark milestones are so my child's progress isn't compared to their peers very often, by me. I forget.

The other day we had a couple of our children assessed for their insurance qualifications. These were two days of  grueling evaluations to see where they were developmentally. When Jess and I returned a week later for the results I was reminded of their delays. The charts and grids all familiar and the stupid little dots that showed how far below the line they were. The in depth discussions of what range of autism they fall under.

Then, a new discovery. A new test that our daughter must have to see how much hearing loss she has from the damage the tumors she had removed when she was a baby. Discovering she isn't hearing complete words, not being able to understand sentences being spoken to her. Mind blowing, a new heartache, more worries, more education I will fill my brain with to help her. A new adventure. My new fight.

Being reminded of those stupid dots below the line I realize within my little bubble I can't rate my children's abilities to their peers. I can't even compare one to the other on their benchmark developments. I use to be asked by their therapists "how is this child compared to this other child when they were this age?" I answered but then followed up with "but they are also so different in so many ways I can't compare. Even their personalities are so different they do thing different and at different stages. It's impossible to compare to each other." They no longer ask me that any more. Now I tell them when this one struggled with something similar to this, I tried this because of this. And it works.

In reality I do compare my children's progress though, but I compare them to themselves. I look at where they started and see how much they've grown and developed. Where were they a year ago and see their progression. Now that to me is mind blowing. I see them developing, it may be slower and not to the charts pace, but they are moving forward and growing. That's the comparison.

I get asked a lot how I don't go insane. I usually smile, shrug, and say it is what it is. They are my kids. But, I thought about it when I got home from the meeting and came up with this. This is what I was given. My husband and I asked for children, we made these beautiful creations of life. How could we not love them? How could we not try and give them the best life they can live? They are ours; they are us. They are our love. And, that I won't forget.