Moving back

Ok so trying to maintain 2 separate blogs is way over my head esp since SPD is so intertwined in our daily family life. What was I thinking right?? ;)

So feel free to follow us home:

http://www.ashmilydesignedlife.com

Lesson of the Day

Don't fix what ain't broke!

He's 6!

This year we decided not to let Enzo get caught up in the countdown to his birthday. He gets too wound up with the countdown and always ends up upset. So for my sanity, this year we adopted a "don't ask, don't tell" policy. I waited till he was tucked in bed the night before to tell him it was his birthday. He was so excited to find out his birthday was just a sleep away!

This year we didn't get to put up our traditional blow-up birthday cake. We couldn't find the plug! I was kind of bummed because we've done that since Ethan was 5 or 6? But that's ok, a birthday movie with the cousins made up for our lack of props. ;)

Dear Motorola,
My Cliq needs a better camera or at least a flash.
Love, Me =D

He even got to take a trip to the store to buy his birthday present, just like he did last year. He loves being able to pick it out himself and getting to pay for it on his own. Although this year, reinforcements came to help him pick out his present.

Not only did he celebrate his birthday at home with us but he got to celebrate it Desuyo-style in the middle of the Target parking lot too! Jordan and Asher wrapped up a bunch of little presents for him, even a corn on the cob (which Enzo thought was just the sweetest thing anybody had ever done for him) and made him a few birthday cards. He totally enjoyed all their goodies more than any of the presents we got him! The Desuyo boys definitely know what little boys like.

Then of course we had to celebrate again with the rest of the family. Although I did forget to take a picture of the birthday boys - Enzo, Zeke and Dashy.

What a way to celebrate his 6th birthday!
Happy Birthday Baby-boy, hope you had a fun filled weekend!

Almost 6

I can't believe  it's been 3 years since he's come home with us. Seems like it was just yesterday he was running around the house in a Pull Up because he refused to potty train. He always gets so excited and so worked up about his birthday. On August 1st he was double checking that this was the month of his birthday. But here we are on his birthday eve and he's forgotten all about it! I think I'll wait until he's tucked in for bed to remind him. We do have a "don't ask, don't tell" policy around here when it comes to Enzo and excitement and changes. ;)

One more sleep and he'll be 6!

almost 3...

he's 4!

the big 5!

** Clarification: We're not gonna let him miss out on his birthday! We just choose not to let him get caught up in the count down....trust me, we need it for our sanity! I'll tell him when he's in bed tonight that his birthday is tomorrow =D

Giggling Tooth

Oh the drama! We're eating dinner last night and Enzo goes into a spaz and runs to the bathroom hysterical. Turns out his bottom front tooth was suddenly loose. He cried and whined through dinner and we eventually decided that dinner was done for him and he wanted to save his dinner for breakfast. He cried and whined while getting ready for bed. Although he stopped long enough to stare in the mirror. Then cried and whined again while getting into bed.

I was really glad to see he wasn't hysterical anymore this morning (really really glad! not sure how much of that I was gonna be able to take). He has spent much of the morning in the bathroom staring and wiggling his tooth. After one of his many bathroom trips, he ran out to say: "Mommy my tooth is gonna fall out soon because it keeps on giggling all over like this *he proceeds with a silly dance*!"

Disney + GFCF Diet = AWESOME!

(From the hubby's cell phone)

I was so worried about trying to stick with Enzo’s GFCF diet while out of town. Even though everywhere I’ve read, people have said that Disney is the best place to be while on the diet. However they did strongly recommend to contact Disney a couple of weeks ahead of time so they can walk you through it and to make sure at least one dining area can accomodate your needs. Well I didn’t have a couple of weeks and I didn’t call. So when it was lunch time, we found a fast food place (we’re talking greasy burgers and all the good stuff) to ask if they at least have a fruit cup or anything packaged just to fill Enzo’s belly. They called one of the managers over and she said they have substitutes for everything and will cook it any way we needed! WOW…well this lady pulls out a notebook that has every ingredient listed for everything on their menu PLUS a list of additional GFCF items they carry!

So after asking me what we’d like, this lady walks me to the register and orders for us…then they prepare the GFCF food in a separate kitchen. The food items are placed in CLOSED containers, I guess they are really careful about any kind of contamination. One of the staff from the special kitchen walks it to your tray. It was awesome! Definitely the easiest order I’ve ever done for Enzo…it must have tasted pretty good too because Enzo gobbled it up!

SPD Blog Carnival - Sensory Fun Photos

The last few months have been busy being busy, especially on the weekends. This past Saturday was such a rare treat to be able to really spend time at home to just kick back. Toots decided to hook the two little kids up with a little water fun for 3 reasons:

1. Enzo has been incredibly…not his usual Enzo self in a good way I might add! “A happy Enzo is a happy family” is the motto around here….
2. It has been soooooooooooooooo crazy hot!
3. Lizzie and her trach aren’t exactly BFF’s with swimming pools or any standing water for that matter.

 

 

They were out there at least a couple of hours before we had to get cleaned up to head out for more family fun and food. But they had a great time…esp Lizzie since we don’t ever take her to the pool. We did have to remind a certain little boy a couple of times not to splash towards Lizzie’s trach, but nothing that 5 minutes out of the water didn’t fix!

 

 

Hope we can sneak in a few more pleasant weekends like this before summer is over!

Click here to read about other families and their summer fun!

ATEC Score

Any SPD families out there ever tried using the ATEC survey that is available online? And anyone use to to follow progression in your child?

Just wondering because the day we started the GFCF diet (we started with casein first), I filled out the survey. Actually I think I may have been a bit modest when filling out the survey because I didn't want to see this crazy result. Well that was the baseline score and today I redid the survey for the 2 week score (since it's been two weeks since we started - 2 weeks CF and only 1 week GF). Maybe I did something wrong because the scores are off...or maybe he really did improve? hmmm I'll get to that on another post but I do have updates on our GFCF journey even tho it's only been 2 weeks.

There was an SPD blog that I came across a couple of weeks ago that use the ATEC survey to follow her child along. That's where I got the link and the idea to do so, but now I can't find it...if that's you (I know I know it's a long shot but you never know who reads your blog) or you've come across that blog and you know what I'm talking about, can you send me that link pls?

Grocery Shopping Horror

Oh boy...I spent a little over 2 hours on a grocery trip that didn't even buy us a week's worth of food. I never realized how much dairy and/or food containing any form of milk products my kids eat. No wonder we don't have picky eaters; we only ever buy the foods my kids eat...dairy and gluten. I think I'm in trouble.

I just need to at least get past breakfast meals. The only foods my kids ever eat for breakfast is cereal and milk or waffles....all of which contain milk (products).

I have a feeling this is going to be a long week....this better be worth it!

Autism and SPD

Random question. How does a Developmental Pediatrician, who specializes in the diagnosis of Autism and related disorders, not acknowledge and believe SPD exsist? Is that even possible, seriously?

And what happens to the families or where would they go? Esp if there is only that one doctor in your area.

Currently reading

It's so overwhelming to read up on diet alternatives for kids like Enzo. While there's no guarantee it will help, alot of the stuff we've read seems to point that it helps with some of the symptoms/behaviors that SPD exhibit. He's not autistic but SPD is on the same spectrum. And even tho he hasn't ever been officially diagnosed with ADHD, that would not come as a surprise if he did.

So here we are...I'm terrified of the initial side effects or withdrawal symptoms that some kids get. Everywhere I've read says that these kids are 'addicted' to casein (dairy) and gluten just like a drug addict. They get the same natural 'high' that druggies get with their choice of drug, it says it's the same effects people get when taking opiates. So withdrawal can be like detoxing from drugs.

That sounds sooooo extreme! Hopefully we don't see anything drastic like that. I know the South Beach diet gives me the nastiest headaches and grouchiest moods....oh oh oh! Someone want offer to take Enzo home for a week or so while he detoxes from his food addiction??

I wanted to start the dairy/casein free today but we weren't prepared for it. All we have in the fridge/pantry is cereal, milk and buttermilk waffles for breakfast. HA! That's all dairy. oops we'll have to try tomorrow. Although I have this crazy thing about starting on a Sunday or Monday...starting Tuesday is so...mid-week? and makes it feel so chaotic and not right...but yes that the OCD in me. hmm maybe I'll benefit from the same diet! We'll have to see...

SPD Blog Carnival - SPD Dads

He makes me laugh! And trust me, any SPD parent will tell you that a sense of humor is a MUST. We even laugh when no one else is laughing (probably because it wasn’t that funny to begin with).

Last Sunday on our drive home from church, I was telling him about a YouTube post someone had on their Facebook. So I had him repeat what they said. He kept saying it over and over. I was laughing so hard and he still wasn’t getting it. Oh it was hilarious!

Ok so you had to have been there to find that funny. It’s still funny today tho…LOL!

ps. I’d repeat the joke but you probably wouldn’t find it that entertaining. We’re just easily amused and crack up at the most random things that no one else laughs at. =D

Click here to read about other SPD Dads

Milipeder

Enzo was describing this long black worm with a whole bunch of legs that he saw on Animal Planet. He says the males are huge. When asked what it was he insisted that it's called a 'milipeder'.

So I look up this new fascination of his.... when I showed him a few pictures online, he verified that it indeed was his 'milipeder'

Enzo's 'milipeder' (aka milipede)

I know one day I'll miss Enzo's mispronounciations. So for now we're content with his wankagoos, eye-tacs, and milipeders.

Gluten-free

Any of the SPD families out there successfully implement a gluten-free diet for their chiild? I know "success" is relative but I guess what I mean is that you saw a definite change and improvement in your child.

Any one have any insight on SPD and the gluten-free diet? How and where do I even begin? There's so much info on the internet that I'm lost! Help please...And it sounds like a lot of work and effort so I want to make sure that it's worth the energy and time.

Eye-tacs

Enzo: Mom you need to wear your eye-tacs.
me: Wear my what?
Enzo: Wear your eye-tacs because you are not very pretty with glasses.
me: What are eye-tacs?
Enzo: You know, your eye-tacs so you can see. I don't like you with glasses. You haven't weared your eye-tacs in a long time.

Thanks Enzo....

You have got to be kidding?!?!

So tonight wasn't too bad. Although after a couple of weeks of non-stop outbursts around here, I'm still left tiptoeing and exhausted.

My mind is running at crazy speeds lately that I can't even think straight, so maybe browsing the web about SPD and other parent blogs for tips and just to feel a sense of 'normal because we're not the only one' probably wasn't such a bright idea at this hour.

I came across a link to this article on another SPD blog (I can't think which one at the moment because I was reading a few tonight):

http://www.lacrossetribune.com/lifestyles/relationships-and-special-occasions/article_9ac24f88-68fe-11df-bdb0-001cc4c002e0.html

It's by Dr. John Rosemond. This article has left me totally speechless (not to mention angry)! You have got to be kidding! I WISH our struggles with Enzo was as simple as taking everything out of his room. I WISH it were that simple because I'd be tossing everything out of his bedroom right now instead of writing this blog.

I'm exhausted and drained...

Aha moment!

Oh where to even begin...the last 2-3 weeks at home have been crazy...even that is an understatement. The anxiety, the tantrums, the frustration, the overload....

To start...we finally got an appointment to see a Developmental Pediatrician but of course the process is long and tedious. The first part of the process before we can even start the 'process' of anything, we had to meet with one of the workers and do a basic interview about our family and child and why we needed to be there...well well well...we were told pretty bluntly that they don't 'acknowledge' SPD because there are no scientic research and that SPD doesn't come and go...duh I know that! (Clearly this lady hasn't ever lived with a child with SPD.)

She was surprised that my child sat through the entire interview and was able to play with the legos and answer questions...AGAIN this lady really has never lived with SPD. My child was able to sit there because I made sure that we really did ALOT of sensory work and spinning (we do the astronaut spinning program) and it really helps his sensory alot!

But by the end of the appointment I felt like a failure and felt like all this work was useless and that any progress was all in my head and that my child was merely a behavior issue.

Well here were are a couple of weeks later at the peak of Enzo's overload and meltdowns. I'm racking my brain trying to figure out where I've gone wrong or what we've missed. I know part of my hang up is that stupid appointment. But tonight after another sleepless night, I had an 'Aha! Moment'.

His sensory goes in overdrive anytime there is change...the anxiety in him is so unbelievable high and makes it all go down hill.

I think our culprit is the anxiety about moving on to the 1st grade. I can't believe I'm even excited that he's anxious about it but I think I'm just excited to know what may bugging Enzo.

I'll have to probe and see but hopefully I'm right...so for now my excitement will have to wait until the little guy gets up.

Poor kid, I've been sooooooo rotten to him too! I can't even begin to imagine what is running through his head....

Gremlin or Vampire?

He doesn't like the sun (or any bright light esp flashing/moving lights).

Butterfly Chaser

When Enzo is wound up and his sensory is out of sorts, he chases bugs. He screams and hollers both out of excitement and fright but regardless, he only gets like that about bugs when his sensory isn't in check.

He's doing a lot of bug chasing and hollering today =)  Crazy thing is, he's not even outside. He notices all the creepy crawlies that are outside his window.

Do other SPD kids do that? My friend's son is that way too...it is kind of funny when you step back but when all I've heard all day is the hoots and hollers, ummm yeah, I'm not seeing the humor in it right this minute.  =}

Really?? We walk in a restaurant (any place really that has a lot of random unorganized noise) and it's too loud for him. It's really not all that loud but too loud for him nonetheless. He looks funny, still cute tho (Thank you Lord for such a cute face!). But hey I'm not complaining, especially when it keeps him still and focused on what's in front of him. I mean really...funky head accessory or a spazzed out Enzo??

Yes, I choose the funky fashion too. =)

Our Sensational Blog's new home

Here we are! We've finally transferred all our SPD blogs over. All these blog posts were our own family posts before we found out our children has SPD and also before we realized that sensational stories deserve it's own blog. =)

We hope that our stories helps other families find humor in the midst of frustrations and struggles. There is light at the end of the tunnel and our kids, like many children with SPD, are like butterflies waiting to emerge!

We truly believe they can and will emerge when we begin to understand what SPD means for our family and find ways to help and relate to our child's sensory world. We're not therapists, so please don't take our  own experiences as that. But having the opportunity to have worked with awesome therapists that really know SPD, has given us a wealth of information to help our child, along with lots and lots of reading (more internet than books tho). Knowledge is key to helping your child and family!

While each child and family is different, what works for our family may not work for yours. Even some of the things that our therapists have 'highly' suggested for us haven't always worked for our family. SPD is part of our life, so the activities surrounding us has to work with our life. But no therapist knows your child and family the way you do, don't give up and things don't have to be done by the book. Find what your child enjoys based on what he needs. Find what works with your family or if you like something, find a way to change it up to make it work for you. We get creative like that too!

We have yet to purchase a true SPD item. Sensory stuff can get expensive, esp the weighted items. So the budget part doesn't work for us, BUT we've found alternatives to some of the weighted items and sensory things that we've purchased and even made!

So what does this blog mean for you? We hope you enjoy our stories but we want to hear yours too! If you'd like to share your day with us, email us! We'd love to have other families share their stories. We want to hear from other families too and get ideas or even just to feel 'normal'. Most likely, that's how you found this blog right? If not that's ok too!

It's one thing to hear from and talk to our therapists but it's another to live with SPD. For now, there isn't a local group in our city that serves as a resource or support for families with SPD (not autistic). We hope to change that soon, but that still requires more planning and thought. So for now, here we are! We're looking forward to sharing our crazy life with you and hope to hear from other families too!

Happy blogging!

Mummy or Butterfly?

Enzo craves being snuggled, squished and rolled...some days more than others. So when he asked to be rolled up in this crazy soft blanket, it was a welcomed request on this particular morning. Yes, our day had barely started and we were more than ready to be squished. He has his pj's on to prove it! Oh what a day! =) Btw, his choice of pj's is another post for another day.

So he was telling us a story as I rolled him up. He said he was like a caterpillar in a cocoon - spinning and spinning. Then one day struggle to come out as a butterfly. Although half way through his story he remembered a story we listened to for history (Story of the World by Susan Wise Bauer). King Tut was carefully wrapped with cloth and 'smell good stuff' - his mummy. But in the end he decided he was a butterfly because King Tut didn't come out of his mummy cloth.

He can tell me his story any way he  pleases as long as he comes out ready to start his day! ;)

An Appeal

Dear Confused Florida Weather,

The chill in the air you are so graciously providing is turning my Enzo into a sensory mess. Please make up your mind - cold or warm?

Better yet, how about leaving us with consistently beautiful, yet breezy, spring weather...one that will leave Enzo focusing his sensory energies elsewhere. =)

Love,
Me

PS. Please reconsider your cold wet days too. The sound of your raindrops, along with the chill in the air, keeps the yoga ball occupied...A LOT! I'm sure Mr. Yoga Ball would appreciate a break, as would my arms and back. Feel free to use the picture below as inspiration for your decision. Thanks.

Meet Enzo

[via SPD Foundation]

I found these today on the Sensory Processing Disorder Foundation website. They have these to print out as cards for over-whelmed SPD parents. Where was this 3 years ago? haha would have been so much easier than trying to explain something I couldn't understand either.

HOWEVER, now that its been almost 3 years since Enzo's diagnosis, this (in my opinion) comes across apologizing for my child's disability. Not sure how I feel about that because I don't think anyone should have to apologize for their child's disability. But then again when you're an over-whelmed mom that's kind of what you (or we) do right? I guess this would be pretty useful for the over-whelmed parent who can't figure where to even begin explaining. I should know, we were there and still are a lot of the time.

But hey at least my kid has an excuse for being a nut and all over the place...what's your child's excuse?? haha I am SOOOOOOOOO just kidding!! =)

You know God definitely has a sense of humor. What are the chances that God would give one family 2 kids that have SPD and the kids aren't even biologically related?! Not only do we have 2 kids with SPD but they are two different types of SPD kids - we have a sensory avoider/defensiveness and then we have Enzo, the sensory seeker/crasher (if you've been around Enzo, then you know exactly what that is). We make a hilarious household if you have that kind of sense of humor (which btw, I don't) And we thought Lizzie would be our high maintenance child because of her medical needs...hahaha God is showing off his sense of humor I tell ya!

For more info about Sensory Processing Disorder, please visit:

• SPD Foundation


• Sensory Processing Disorder


• The Out-of-Sync Child


• Sensational Kids

Pomp and Circumstance

Good morning sunshine! or is it? We shall see! Today is the last part of Enzo's reevaluations for Occupational Therapy. He's grown in every way and has worked hard to accomplish his goals. He's been discharged from Speech and Physical Therapy  for a little while now, so this is the last leg for him. After today, he could be therapy-free!

He's been all 'therapied' out for a long time now (not sure who's more 'therapied' out, me or him). He loves his therapists though, esp his OT (so do I, so I'm not sure if I'm ready to discharge her). But since a month after coming home, that's all he's known...week in and week out. So this is long over due.

Although last week when we were talking about his reevaluation and graduating from OT, he was really bummed and said he wasn't going to work hard next time. I'm hoping he forgets today =)

So...will we be marching to 'Pomp and Circumstance'?

...to be continued...