Taking autistic kids to the carnival...10 tips......

There came a point in the assessment process that made me feel , for lack of a better word, bummed. And that was the whole not knowing whether or not our son would enjoy some of the simple pleasures in life that we as kids enjoyed. I think that's one of the most difficult things as a parent is not knowing whether your kid is going to enjoy what kids typically enjoy. I remember last Christmas being at a loss as to what to get for him. Do we get him the transformer he has never seen before or something sensory that we know he'll play with repetitiously for hours on end? Obviously the latter was by far the better choice but in some weird sense it bummed me out a little. But, on Christmas day when he opened his sensory geared gifts it was as if he had discovered magic. And that little grey cloud left my vision. 

 When we saw the little carnival pull into town I was super excited. And I was hoping that our boy would be too. Sure enough, he saw the rides and immediately was asking to, "play" while pointing at the kid rides. I was beyond thrilled. Now, I know that the carnival was a hit last year but every year he's shown us something new in his preferences and you just never know what will be a hit tomorrow and an absolute no-no the day after. Well folks....

It was a hit! Of course he remembered things I was hoping he'd forget, like the cotton candy, but it was all something that I had always hoped for and that was and is that my kids will always have fun regardless of sensory preferences. And he did.

Of course I realized, sometimes, when doing the great carnival experience, things don't always go as planned. Here are ten tips (from professional carnival goers) for taking a kid with ASD to the carnival that will make the trip more pleasant.

1. Employ some sort of waggon or stroller to accompany you to the fair and already have them in it when you hit the gates. In between rides put them in it. When getting off rides put them in it. Worked wonders for us.

2. Eat before you go to avoid meltdowns and bring plenty of water with you and a small snack and maybe even a picnic depending on how long you're staying. 

3. Expect anything. If your kids wants to just watch the rides. Let them. It's no biggie if they don't take advantage of what we think is fun. Let them just watch happily if that's what they want to do. 

4. Take other family with you. It's always better to take the understanding people with you that way they can sit with the kidlets when you wanna ride the rides. Or agree to trade off on the riding of rides with your partner. It's OK to go on alone. Sometimes you need the thrill to put things into perspective. lol

5. Bring one of their vices. If they like a certain video on your phone let them hang out with that while they process everything around them. Let them stim, hand flap whatever they need to do to feel comfortable that's appropriate. Forget about the stares. Whatever people think about you or your little one is non of your business. Just as mush as it is non of their business, but always be flexible to answer the genuine questions about why it's happening, in the most it's "no biggie" voice you can muster.My son had a vast treasure of receipts he would flap to process the ever changing environment of society. We encouraged him so he would get used to it. Now he doesn't need them but back then it was a must or tantrums would ensue.

6. I would suggest, for first timers trying this, to stay an hour tops. You know your kid best and what they will and won't handle so plan accordingly. We have a pretty small carnival that comes through so 35 minutes is how long we stayed and it was enough.

7. I know this might be crappy advertisement but don't play the games. My kid loves repetitive movement and games. If I were to let him play the games we would have been there for hours on end and 100's of dollars less. Don't do it unless you think your kid can part with the activity.

8. Rules on riding the rides. If you have a kid that can go to the bathroom by himself and not get hurt or into anything then I would say they can ride the rides alone as long as they are tall enough and know what's going on. If you have a kid that's a runner, will not sit still, doesn't like being harnessed, I would say use a lot of parental discretion in deciding whether it's a good idea or not. Again you know your kid.

9. Be prepared to spend money on tickets for rides. I let my son know how much money we had and that once the tickets were gone that was it. He understood for the most part and decided he wanted to ride the kid rides all night long. Well, that's what we did. Watched him on the rides the majority of the time. I enjoy that. Many people don't.  It's refreshing for me after having a long hard day of tantrums to see the wonder and hear the laughter of my son. 

10. Don't over do it. If you see the eyes droop and hear the slurred speech of a child that needs to rest the senses, leave. Call it a day. An overwhelmed kid with ASD can, sometimes, be easily overwhelmed so the second you see it call it a day. Again you know your kid and how much they can handle.

or yeah I guess there are 11 tips.

11. Take photos regardless of who enjoys it, you have every right to enjoy it. This is your family moment. It is what you make it. Don't let a tantrum and crabby people mess it up regardless if its the child or the partner or anybody. Enjoy it this is your family moment and make sure you record it as something great to look back on. 

Anyway, those are my tips for families who are willing to try it. I can't state this enough. You know your kid and what they do and do not process well. If you think it might not be a good idea but still want to go, find a sitter and take your partner or friend and hit the carnival like your 16 all over again. Do things that scare you, make you laugh till you cry. That is what life is worth living for...happiness. 

As always thanks for reading.

With Gratitude,

Amber Jones

Is Autism evolution, spiritual enlightenment, or a disorder?

I read a lot of articles these day about what autism is and how we must "fix it." Or understand it. On what level does it operate, the mental or the spiritual? May advocates thinking it's a horrible disorder that requires a specialist with little parental interruption and then the other side of that coin is the requirement of a dedicated parent with little specialist interruptions. So, many different descriptions of what autism is and is not. It can make any parents head spin and undermine the creative way of looking at it.

Here is my personal definition of what autism is. A repetitious new way of experiencing and reacting to the senses. I find that that definition works for our family. My son feels and reacts accordingly. Does not make him less? No, just more interesting and with new perspective on a world we see one way. Does it mean evolution. Yes. There's something new. A growth of different neural processes that senses and reacts to the world differently. I wouldn't say it's a disorder because they are seeing something we're not. A new way of being. 

Is it spiritual. Well, we are spirit having a human experience so of course it's spiritual. 

The important question. Is it a disorder? Depends on who you talk to. I don't have a son or daughter that I have to worry about self-harm with. I imagine there are those parents experiencing extreme behavioral problems who view it as a disorder. What I know is my son. And while the communication is still something we're working on. And the tantrums are a bit crazy when something triggers him, we know he is processing the world around him differently and why not give him the time and space to do so. Do we still keep a routine for such a free thinker? Of course, but we don't force him into something unreasonably uncomfortable to him. 

So what is autism? Well it's something that people have made a title out of. I use it because it gives people a little heads up, that they need to be patient with my kid who doesn't think the way they do....I think. lol. I also use it to help guide people to my blogs, so that they know they are not a lone in the whole parenting a kid on the spectrum. 

In the most simplest of terms. It's a new way of processing. People may not think that, if they have a child on the low functioning side of the spectrum. I accept that. It's not my place to tell them what they should think it is. I only know wheat it means for me and my son.

It means drawing numbers endlessly on the menu at our favourite restaurant. It means blowing bubbles and playing play dough at all hours of the day. It means reading him his favourite book 10 times a day. It means learning more about our solar system that he is fascinated by. It means making sensory toys and helping others parents to make them. It means sharing stories and networking with other parents. It means sleep deprivation, not understanding all the time, making it through the obstacles, and supporting our wonderful community of autistic children. That's what it means for me.

As always thanks for reading.

With Gratitude,

Amber Jones

Changing an autistic kid's room....lesson learned.

May look random but it was perfectly placed by a 3 year old and with reason. :-) Photographed by Keltanys.

Well, I learned something new about my Keltanys yesterday. He doesn't deal well with change. I guess that shouldn't surprise me really. Most kids on the spectrum don't deal with it so well. I also should have known, he is my kid and I don't deal with change well either.

I remember when we started to set up the bedroom for bringing Keltanys home from the hospital. I felt a bit of grief and just icky about the way things were changing so fast. It bummed me out. Kinda the same way I feel when someone springs a surprise visit on me or when plans change to quickly. It takes me a minute to adjust.

My son deals with it on a bigger emotional level. So, the story starts with stepping on a smurf. I was less than happy about the state of his room. He likes to make pockets of nests everywhere and often times if you move something in them while he's looking, he gets upset and puts it back. So, after stepping on jokey smurf I decided that it was time to clean his room and make it so that if he wanted his toys he needed to ask us for them. Mistake number one.

Regular toys that he has made friends with.....you don't take away.

So, we cleaned his room and got rid of some stuff that we know he doesn't play with anymore and put everything away. Unfortunately, where we had originally placed his toy ottoman was in a blind spot so he couldn't even see the thing. All the while he was at his Aunties not able to be part of the transition. Mistake number two. For me if something's changing I like to be able to see it happen or be the cause of the change, or be the organizer of it. I don't know what I was thinking not making him apart of it.

Anyway, we brought him home and he seemed ok that night but when the next day came we saw a vast change in behavior. He was super sensitive. Would cry if you looked at him funny and all the while would be in his room making a nest of the few items available to him.

And today has been even worse. When a change happens my son feels like he's lost some control since he doesn't process change very well yet. And I think he knows that in some small way. He'll sit there and be super upset if things change to fast that he just wants the person with him to be still as possible unchanging, unmoving, quiet and without will. Well, he's been mad at me for everything today. And when we were at therapy appointments today for him he let them know how upset he was. I cried a little with him knowing how hard it must be to be so little and feel like the world is falling apart. My heart kept breaking every time he wanted to see people be still and quiet. And it dawned on my quickly that if we are to make changes to his world we have to do 2 things

1. Have him help.
2. Keep something as a constant. Something that will always remain in his foundation so that when something changes he still has something to hang onto in the roller coaster of change.

So, lesson learned. We've given the toy ottoman back with the stipulation that he picks everything up when he's done. So far so good.

My heart still breaks thinking about it but I know for next time right. This has made me question some things regarding my going back to school. I think it might be OK for two years, but, a whole seven years with the intensity of the last five will be over the limit of time I'm willing to spend sporadically away from him. So, much needs to be thought of when it comes to getting him ready for this world. I'd rather spend my days getting to know every aspect of my Keltanys than go further into debt, and the other stresses that we create for ourselves.

Anyway, plans are under review and I have learned that change isn't easy for my boy. Better now than never!

Thanks for reading.

Always with Gratitude,
Amber Jones

Milk and the Autistic Child...

Milk is an absolute no no in our house. My Husband is lactose intolerant, and my son is lactose intolerant...and as many papers have said, it sends our autistic child through the obstacle course of cognitive difficulties.

What we have found is something quiet interesting. If my son has any dairy at all, he experiences all that would be associated with lactose intolerance and then the added effect of tantrums, less verbal communication, chronic bowl issues, loss of appetite, and insomnia. It sucks to be quiet honest. Not because I have to give up milk, but because it's in e-v-e-r-y-t-h-i-n-g.  

We first realized this last year when he was having explosive accidents all the time. Call me a little blind but everyone I had talked to said it was normal until one Mom said, "No way! Something is wrong." I don't know that being lactose intolerant is all that bad considering the works of "The China Study." Awesome book! Go read it. It does make it difficult to buy anything processed since they use it as an ingredient all the time. It was fortunate for us that my husband is already lactose intolerant, so, we never had milk in the house to begin with.

Things, however, like butter and cheese got the ax quickly. And finding alternative solutions to those ingredients came, thankfully, to the lovely cook book "Forks Over Knives."

For dairy alternatives check the link below.
http://www.peta.org/living/food/dairy-replacements/
Also get the cook book "Forks Over Knives" mentioned above. Super awesome recipes!

I'm not sure what the connection is between having an upset stomach and cognitive function difficulties but I did discover something interesting about my boy and head injuries. Whenever my son has had, a not horrible, but decent, bump to the head his chronic bowl issue takes off as if he's eaten some ice cream. It is the most interesting thing. I know that some concussions may produce similar effect but his falls have been super minor and he reacts as if he's eaten a ton of yogurt. It definitely tells me that whatever the connection is, it is an intense and super sensitive one. So, it would make sense that when his stomach is upset from say eating ice cream or yogurt, he becomes more repetitive, more rebellious, agitated, prone to tantrums, less verbal, and an insomniac. He feels his tummy ache on a totally different level. And the link while sometimes unfortunate is pretty fascinating. Said the future Doc of Traditional Chinese Medicine. he he.

Anyway, this is what we've discovered with Keltanys. If anything it's worth a try. Just remember to read the labels. Things won't say they have milk but then list thing like casein which means milk. Here is a link with a list of things that mean "milk", "may mean milk" and "should be safe", to help you if you decide to try the Milk/Dairy Free theory....

http://www.kidswithfoodallergies.org/resourcespre.php?id=37

One more interesting thing to consider. In Traditional Chinese Medicine when it comes to diet the first thing the Doc will tell you to cease with autistic children is the consumption of Dairy and Gluten. I will tackle the Gluten argument another day.

As always, you are the expert on your kid, as well as the nurse, the doc, the teacher, and sometimes the scientist. And hey if something works why not adopt it into practice.

As always thanks for reading.

With Gratitude,
Amber Jones

Being a minimalist with an autistic child.....

We live in a 17 ft by 23 ft apartment. I wouldn't say it's too small. I actually enjoy us all in close proximity cause it's easier to keep an eye on both children and brings the family together. What bothers me is the accumulation of stuff. I think I've always been that way though. When I moved out of my house and into my own place I never had so much that I needed a U haul. As I came into being an adult my accumulation got smaller and smaller. I hated the hassle of having to pack so much junk around. I got so used to getting rid of stuff that I realized what I needed to learn was how to not accumulate so I wouldn't have that problem. When Will and I became a couple I had a suitcase of stuff. That was it. As time passed and we realized our dreams together we moved out of his Aunties house (she's amazing by the way and we loved every minute with her. Such awesome company) into this apartment in May 2009. I love this place and it will be heartbreaking to leave in July.

Anyway. when we moved in it was the perfect size for us. We had just enough room for everything. And then in 2009 in October we found out we were pregnant with our son Keltanys. Many people had questioned if we would move and find a bigger space. I was never keen on moving since I have been a nomad most of my life, I wanted to stay in one spot for longer than just a year. So, whenever anyone would kindly offer us something bigger we declined. Time moved on and we still found that we enjoyed the space. All three of us fit comfortably. We have one room a small living room a kitchen and a bathroom. We were happy. We did start to notice that stuff was piling up so we scaled down appropriately now and then. We did many purgings and took a lot of stuff to Raven Recycling's free store. After two years of having our son we scaled down even more and realized that a lot of stuff we bought or received as a gift before our son was born we never used.  Then in the spring of 2013 we found out we were expecting a second. We were thrilled and more than excited to start planning out the kids room. Everyone was convinced that we would move into a bigger place before the baby was born. When we didn't people thought we were nuts. I didn't want to move and still have a hard time wanting to now as school in B.C. looms in the distance.

In order to prepare for our daughter Will and I did some serious soul searching about materialism and what really matters. We bought e-readers, signed up for library cards (we're bookaholics), and read Annie Leonard's "The story of Stuff." We were determined to not accumulate anymore. In late October we had a baby shower and we received so many clothes it was amazing. What I did to make sure that clothes got cycled through appropriately, was to sort them according to size and pack the bigger clothes away. In November my daughter was born. As we got used to being a family of four in our 17 ft by 23 ft apartment, I realized it was time to minimize even more. My daughter, Eltiyena had so many clothes she could start her own department store. A lot of it was clothes she grew out of. So I went through her clothes that did fit and kept 6 pant, 6 shirts, 3 onsies, 3 sleepers, 3 jackets, 2 dresses, and a packet of socks. 3 stockings, 1 pair of shoes. I also kept one box of clothes that didn't fit yet so I didn't have to buy any when she grows out of what she has. That being said if something doesn't fit in that box it goes. I was a little liberal with her amount of clothing cause she's creative in the way she messes a diaper. he he.

As for my son. How do you go about minimizing things from a kid with repetitive and sensory needs. It was easy for us because he loves interaction now. So, anything that I play with with him usually gets put away after we're done playing, and that amount of stuff we play with together is small. He values interaction, over singular purposed toys. So, we bought an ottoman with a lid 15 in by 15 in and 15 in tall. Stuck all the toys we've seen him play with, and enjoy, into that thing and what ever didn't fit we got rid of (He has a bin of stuffies to that he shares with his sister). As for clothes. 5 Pants, 6 shirts, 2 jackets, 2 sweaters, 6 pairs of socks, 6 pairs of underwear, and 1 pair of shoes.

For my husband 3 Shorts, 3 pants, 9 shirts, 2 hoodies, 1 sweater, 7 boxers, 7 pairs of socks and 1 pair of shoes.

For me. he he. 5 pants, 6 shirts, 2 hoodies, 6 unmentionables, 3 upper unmentionables, 1 skirt, 7 pairs of socks, and 1 pair of shoes.

The collective of our clothing can fit into dresser with 4 drawers.

When we move a lot of furniture will get sold. And when we arrive at our destination we won't even have half of what we had here. We have still got a ways to go in terms of our one closet and what it holds. It's not full to the brim but I would like to have it so that when I walk in to our place what I see is what we have. It takes time and practice to get used to being without so many things that take up space. I love open space. So does my Son. He loves to run. So, it's been easy for him and me. And since we have been on this journey we've learned to appreciate the things we have, and we also have come to know the things that really matter to us. They are the memories we make that are important to us. Anytime we laugh together, any time we make it through the hard times together, seeing each other light up at the fireworks on the 1st of the year and 4th of July. Watching Keltanys discover the world around him. Seeing him light up when his favorite songs are turned on for him. Seeing him run through the forest and laugh as he goes.  Watching Eltiyena take her first steps and listening to her first words. Those are the things that matter to us.

Our goal is to own a small parcel of land and order, from this great place in Maryland called Hobbitat Spaces, a home that is as big as the place we're in now, but with a loft. We will have our own garden and do a lot of homesteading.

Every step we take now is towards that future. And we while we can't wait, we revel in the journey because along the way we can look back and see that nothing is impossible. Will and I started with nothing and have come so far. But that is a story for a different day.

Can you minimize and live in a small space as a family of four? Yes. Can it be done with a kid on the autism spectrum. With determination anything is possible and we are living proof that it absolutely can be done.

Anyway, if you have any questions about minimizing or living in a small cozy space, just leave them in the comments section below. As always thank you for reading.

See ya tomorrow.

With Gratitude,
Amber Jones

P.S. Link to Hobbitat Spaces of you're interested. ;-)
http://hobbitatspaces.com/

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

Light Box!! And a sweet giveaway!

Well I thought I learned my lesson yesterday when I fell asleep blogging at this hour....apparently I didn't.

Anyway, I am pleased to announce that our light box tutorial is up and awaiting your views.  Here are some things you will need before you start this project.

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

You can find the video link below in the P.S. section of this blog. 

You'll notice that because it is summer now (Yukon only really has two seasons..hehe) a lot of our videos will be shot outside. The reason?

Well, I guess i's time to say it. We are relocating for schooling purposes and want to capture as much of the Yukon as we can so why not make it a part of our vlogging. Our next stop is British Columbia for 7 years of crazy schooling, all to become a Dr. of Traditional Chinese Medicine. Yes it will be awesome! Yes we are insane. But if we weren't we wouldn't know what might be possible. It's a huge adjustment for our son but we plan on integrating him into the idea everyday to make the transition as smooth as possible. He like's his routine and will miss so many people he sees here, but if we don't repetitively teach them about change nothing can grow and, as result of that growth, change. 

A new feature to our blogging and vlogging will be talking about Keltanys' diet and what you can do about a fussy eater. Meal plans and great recipes will be included. I will also go over some holistic things that have helped our little guy. 

And last but not least....thhhhheeeeeee GIVEAWAY!!!

So, every month on the 19 we will have a giveaway. This month I will be giving away two aprons with some spiffy artwork on them. Both designed by me. All you have to do is Share this blog link on facebook, from our FindingK profile page, like it, and your name will be entered into the draw for a free Amber Walker designed apron. So, simple. Pictures of the aprons will be posted in a week when they're finished. 

Anyway, that's all I got for tonight. Today was a crazy busy day with my Son at the reigns. Have a good night all. 

With Mass Gratitude,
Amber Jones

P.S. The link for the light box tutorial. ENJOY!! 
https://www.youtube.com/watch?v=mNUebvwsxSs&feature=youtu.be