Like a birthday at the carnival, with unlimited food and tickets! Minus the puking...

It was a super busy day. I don't even remember what day it was. I'm pretty sure it was last week. I was sitting on the floor and was just about to get up when the most magnificent thing happened.....ready....here we go.... I got a hug from my son, and a little cuddle. And it wasn't one of those hugs where I'm pulling him against his will to get a half hug. It was a need to reach out and embrace Mommy moment. I didn't cry cause shock had set in first. The kind of blank stare like, what's happening, then the realization, then the welling of tears and then fighting to hold them back so I didn't scare him off. This I must say is the very first hug I've ever received from him where he was the initiator. And to complete this heart stopping moment he laid down with his head in my lap and played with a toy. I was amazed. This is something I accepted might not happen right away or ever really and suddenly there it was. His little arms wrapped around me. He even hummed a little hum as if he'd been meaning to do this but just didn't know how. I will hang on that moment forever.

When we first noticed Keltanys not wanting to be touched it was strange to us. he was almost 16 months. He would get agitated if you comforted him, told him he was cute, or even tried to get near him to hug him. He would fight to be put down. We would constantly tell friends and family it's not you it's just his preference. It's so common these days to have adults that don't want to be touched so why not afford children that same right. I actually was a little glad that he had that preference cause he had no concept of stranger danger. I was still sad that he might not reach out and show love that way but as they say let it go and it will grow.

After months of going through his sensory boot camp, and speech impairment, we got used to the whole idea that it may always have to be a prompted thing every once in a great while. What we were most terrified of losing was more eye contact. That was something my Mom taught me at a very young age was that communication can still take place if through nothing else but eye contact. I was more afraid of losing that than anything else. And sure enough it started to fade.  I was desperate. We reached out to a speech pathologist who gave us some pointers on creating more eye contact and they did work, but then out of the blue he was taking a huge interest in numbers and while walking through the toy department, we found a playdough set with cut out numbers. Thank god for playdough!!!! Every morning we would play and his eyes would light up as we played. Suddenly I could coax him into saying, "Playdough back please," "Flatten please," "Squish it please," all the while maintaining that precious eye contact and showing him what each verb meant. Then while the whole playdough craze was happening we introduced bubbles, and even more opportunities to communicate unfolded and soon enough after months and months of no touching, we got him into rough housing where the opportunities to communicate were vast and the eye contract was more constant. Slowly, but surely it was OK to ask for hugs and kisses now and then. And he got used to it. He would run up and give everyone hugs and kisses when asked.

After a year of that, and many hours of play based therapy mixed with endless rough housing, he now is pretty used to our parental affection. Now were teaching him that not everybody needs to be kissed and while hugs are always good not everyone always wants  so we should always ask if it's ok first. He always gives me a look of, "but I just discovered that they're great. People must be crazy not to want one." Still I remind him, but nevertheless am more than grateful that he thinks they're great.

Thanks for reading again.

With Gratitude,
Amber Jones

The first of 4,323 Pictures

Keltanys with the camera phone. The first of 4,323 pictures.

Went into my camera phone the other day to retrieve  some photos for our blog and found 4,323 pictures of my son. The picture you see above is the only one where he is not checking out the entirety of his face.

I was amazed I know that when I handed him the phone he was playing with the camera but wasn't certain what he found so interesting about it. Well, I found it. I should have clued in I guess. If there is something that can reflect his image back to him he finds it very fascinating. He'll dance to watch himself dance, smile to watch himself smile, do silly faces, run, stomp, act like a robot, he does it all to watch his reflection. He loves it. And then finally something sunk in as we were in the park today. My kid's majority sensory need is anything that is visually stimulating. When he's in the swing he likes to throw his head back and forth and then will crack up. He loves the visual effects it causes. He also loves running really fast while blinking like crazy. When he's tumbling things in his hands he likes to blink really fast. I for a long time thought that it was the feeling he got from it. Nope it's the visual effect that sates that sense. Then things just started to click, the glow in the dark board he can write on, the light up board he has, the way he cracks up when he sees people stop and go and stop and go when doing the robot, the tumbling, the running, the stomping with his eyes half closed or blinking like crazy, his making random shapes with random objects, his need to see things in complete chaos, watching things spin, running in circles with his eyes set in the corners of his eyes, spinning in circles and doing the same thing...almost .e-v-e-r-y-t-h-i-n-g he does repetitively is for the visual stimuli. Finally a direction I can work with artistically. A tool by which I can teach him. 

Took me long enough. 

Anyway, I will not cease the playing with of the camera phone as I believe it is a great way for him to learn more about himself and take great photo's, especially when I have such a hard time in keeping him still for one. Look guys two birds one stone. 

Hence my creating of the light box. The tutorial on how to put it together will be up this weekend. In the meantime if you're are interested in this project here is a list of things you will need for this project. 

Things you will need to make a light box...
1. A see through plastic bin
2. LED Battery operated lights ( make sure you get the batteries)
3. Parchment paper
4. Tin foil
5. Tape (scotch)
6. Scissors 
7. Coffee. 

And on a side note......

On the 19th of next month we will be having a give away. Stay tuned. Details for the giveaway will be posted on the 31st of May. Until then grab the things you will need to make the light box! 

See ya later!

Always with Gratitude,

Amber Jones

What is the formula?

At 4:46 ....A.M. I woke slowly to a little voice. "Mama lie down? Mama lie down?" Somewhere in Mom brain I realized I have approximately 30 seconds to lie down with him to keep him asleep. For some reason I never listen to this voice. This voice tries to save me precious sleep and I always try to ignore it thinking that I can get creative with my bundle of cuddle. Telling him to "go lie down" or "Mommy will be there in a second." It always fails no matter what I say to the extreme of bribing he doesn't go back to sleep by himself and sure enough that 30 seconds passes and I am awake with the 3 year old. The trick to Keltanys going back to sleep is pressure on his hands and feet. It doesn't have to be continual it just has to happen in his stages of grogginess, and he's out like a light, and the world makes sense again. If only it were that easy some days. The trick to even getting Keltanys to sleep is a combination of melatonin and pressure on his hand and feet and no where else. At first I had some really big reservations about using something that would aid him to be groggy. "What kind of Mother would do that to their kid?" Well I can tell you a little story that propelled me to even think about opening the bottle.

For about 6 months after he turned three we experienced what some would describe as child induced insomnia. My son like clock work would wake at 10 A.M. Go down for a small nap at 1 P.M. and then be up till 2 or 3 in the morning. Then back up again at 9 A.M., 10 A.M, .or even 8 A.M. the next morning. It was less than ideal. Part of him staying up was his under sensitivity to movement that I will discuss another time. Anyway, our melatonin runs well so we were exhausted by 11 P.M. plus we were both working not to mention I was pregnant with our second. In a sleep deprived state we walked into the library one day and Will found an amazing book called, "Healing our Autistic Children." Now as a side note, when I first read the title I was not impressed and to be honest still am not a fan of the tittle. I think Autism is not something that needs to be completely healed. I don't mind my kids repetitive behavior, or his sensory preferences, because they are important to him and I think are there for a reason. What I do care about fixing or "healing" are his tummy and sleep issues.  In that book Julie Buckley, M.D. talks about melatonin usage. My husband was really gong ho about all the information. I on the other hand was skeptical to say the least of anything that could help heal my autistic son. But one thing overruled all of my senses and that was sleep deprivation, that was making me cranky and eating copious amounts of chocolate. So, I said why not. I wasn't getting any nicer and my waist line couldn't handle the pressure.

We got home from the local Wal-Mart and waited for 8 P.M. to hit before we opened that bottle. I was nervous honestly,  always second guessing our decision. Wondering if we were good parents for giving something to our child as a sleep aid. I know I had read over and over how melatonin works and that it is not dangerous even for kids, but second guessing doesn't discriminate between good information from the crap you drum up in your head. 8 P.M. came and we halved a 3 mg for our little man. In 30 minutes we saw Keltanys go from high intense running all over the place to, sitting and doing all the bedtime procedures, to asking for "Momma to lie down", to asleep. I was so nervous that I stayed up most of the night checking him ( he slept in our bed that night) to make sure he was alright because it had been many a night that he was up and I just wasn't used to seeing him with his eyes closed.  In the end he was fine and so were we.

He still get's the 3 mgs at night around 7:30 P.M. There is one thing, however, that the melatonin did not help and that was the need for "Momma lie down?" Like clock work every morning my little man at around 4 A.M. will wander over to our bed, rub his eyes and reach for my hand to drag me back to his bed so that I am there to give his little hands a feet the loving pressure he needs to get back to sleep, and I don't think I would have it any other way. There was a time when touching him was a big no go. But that is another story for another time. I'm just so grateful for the wake up call that tells me my differently wired Son still needs me. And I wouldn't trade that for the world. See ya in a post.....

With Gratitude,
Amber