Progress

just a few words that they've been saying lately...

little man: sea lion (he yelled this out when he saw them at Sea World last wkend), dolphin, shark, dog, cat, a noceros (Rhinoceros), elephant, food, milk, red, blue, yawoah, green, orange, tons of numbers, fish, turtle, cookie, anana(banana), nemo, oink (when he sees a pig in his books) and Mama (((sigh))). He finally said Mama for the first time (again) about 2 wks ago.

peanut: all the colors & numbers, what, thank you much Mama, Momo (Nemo), sharka, dolphie (dolphin), car, bird, milk, fur (bread, but she signs bread perfectly), yum, coco (cookie), come sit down, welcome(your welcome), follow me, color, cracker, and many more little things are popping up.  YAY for PROGRESS!

V.E.N.T

I've realized over this last year that everything seems to be word of mouth in the ASD community.  It's a shame that you are thrown off a cliff at diagnosis.   The only reason we found out about HBOT for autism was b/c we go to events and chat with other parents.  We stood in line for sensitive santa for 3 hours and talked all about it.  (BTW, SS was so NOT WORTH IT.  It was at Westshore Mall and totally disorganized. It's better to wait the normal 20-30 mins for the amazing Santa at I Plaza.)  Two days later, we called the center and were booked for January.  That's how fast it happened.

Any-who, I decided to start an online support group and I named it VENT (Varying Exceptionalities Network of Tampa).  Honestly, we have people signing up from all over, so you don't have to be from Tampa or from the USA.  This is a place where you can go to vent about your crappy day, shout out one of your kiddo's milestones, discuss therapies/treatments, extracurriculars, sell things you are no longer using for PT, OT or Speech, etc etc.  It's a private group, so message me if you'd like to join. It's neat to hear what treatments are working for other families. especially from over seas.

HBOT update

I told you that I'd try and post an update here and there, so here it goes...

Both have been sleeping at least 12 hours EVERY night!  The kids took a couple days to get used to it again and now they are DIVING into the machine, yelling for us to come in.  :)  We are so glad it only took 2 days to get in the groove again.  I always tell people that you need to give it a few weeks when you start.  Most of the kids at the center we were at took a LONG time to get used to it, but that was also a noisier place.  We have moved ours into a spare bedroom that's quiet and cool.

B is saying a lot more words and is even partially spelling a few, esp. "ELEPHANT"!

E is also talking more.  Yesterday she asked for a magazine while potty training!  :)  Speaking of potty training, she is remaining dry all day and is hardly wet when she wakes from 12 hours!

Woo Hoo for less diapies!

Just keep swimming....

Many of you are wrapping up the school year this week and I'm right there with ya.  There are only two, count them, TWO days of school left.  YIKES!  If you are like me, you have been plugging away for months trying to set up therapies and things to keep your kiddos entertained.  I'm sad to report, I. HAVE. NOTHING.  :(  We are keeping up with our HBOT and we are trying to set up in home speech, but we have nothing else planned. All of the camps require the kids be at least 5 yrs old, so those are out.  We are still looking into one or two and I'll let you know what I find.

A friend of mine also posted concerns about the summer.  I wrote back, "Say it with me, 'Just keep swimming, just keep swimming....'".  If  we can just keep pushing along and keep our heads above water this summer, we should be good.  This should be the mantra for all of us in the ASD community.

Life is difficult enough and we should be able to look to our friends for love and support.  A true friend is someone who will lift you up, not tear you down, so beware of the devil working through supposed "friends".  A little something to ponder....

“The righteous should CHOOSE HIS FRIENDS CAREFULLY, for the way of the wicked leads them astray.” (Proverbs 12:26)

Hands full

Okay, how many of you have done this?

Today I made the kids' lunches (back up, in case they don't like the hot lunch), got shoes on and headed to the car.  They made a fuss about taking their stuffed animals, so i grabbed my purse and then offered to carry the crazy amount of animals.  One big problem...can you guess?   Yes, I forgot their backpacks and lunches!  Oops!  We get to preschool, they get out of the van and look at me like, "Where are our backpacks?".  Poor things are so used to having them (even though they don't need them for preschool) that they looked sad.  Hopefully they will forgive me when i pick them up and they see the goodies i got today.  I was very busy shopping for their rooms and even found another elephant for little man. He is obsessed with them now and it's adorable.  Of all the words, that's the one he started saying a few wks ago & I LOVE watching him light up when he gets a new one.  Now he tries to carry them all around the house!

Hyatt Coconut Plantation - Another fabulous resort for Special Needs Families

The Hyatt Coconut Plantation in Bonita Springs is where we vacationed during Easter.  I can't say enough about this resort.  WE LOVED IT!  This has to be one of the best resorts for families, especially those with special needs.  Everything is centrally located and almost all of it is FENCED in!  Bonita Springs was a good location too b/c it's south of Sanibel Island & Ft Myers and just north of Naples & Marco Island.  The beaches were beautiful.  FYI, if you travel to Sanibel or Captiva there is a $6 toll to cross the bridge.  Just a heads up!  We had planned on staying on Sanibel Island last year and changed it to Marco Island at the last minute.  Now that we've seen Sanibel, I think we'll shoot for it soon. All this is less than 3 hours from Tampa!  Here are some pics from our trip.

Our lanai - fully screened in and HUGE!  The kids loved playing out here.

  The kids relaxing.

    
 One of the many pools. This one had a beach entry and basketball hoops.

   This is the baby pool.

  Fully fenced in rubber play ground with sand.

  Our kiddos loved the cabanas and hammocks.  They even asked to nap there.  :)

  The lazy river....relaxing!  There are 2 ports of entry - convenient since it's so long!

Jenny McCarthy on HBOT

Jenny McCarthy on Ellen talking about HBOT!

RFK Jr research paper - INTERESTING!

RFK Jr paper...a must read!

HBOT is up and running!

This past weekend, the hubs, kiddos and I loaded up and drove across the state to Jacksonville to pick up our HBOT!!! Very Exciting!  When we arrived we weren't sure how the kids would behave in this family's  house, but much to our surprise, they got along well with the other kids and we were able to have a long, relaxed conversation.  Entering into another autistic family's house is like coming home.  There's no pressure & no judging.  ASD families welcome you with open arms and are ready to share their most private details.  It was wonderful sharing details of therapies, schools and doctors.  You enter as strangers and within seconds you are the best of friends, sharing your journey through Holland.  You talk about your excursions, things that veered you off course and the shear beauty of this place.  Best part of that day was watching all four of the kids play nicely together.

Our night did not go as smoothly.  We stopped off to visit the grandparents in Ormond Beach and then headed off to our hotel.  As I mentioned in a previous post, hotels are NOT our friends.  We got a suite, but it was too enticing for them.  We arrived late and after some obligatory tv viewing, tucked everyone into bed.  They were excited at first, then.....TOTAL CHAOS!  Needless to say, I didn't sleep more than 2 hours that night.  At one point, everyone was in the same bed, so i snuck off to theirs in the other room and woke to someone coughing in my face.  It was a long night!

Sunday we arrived home and the hubs was all to eager to get the HBOT set up.  I was just trying not to pass out.  ;)  We put the kids down for naptime, set up the machine and all the goodies that came with it and tested it out.  PERFECT!

I'm not sure that i'll be able to keep up with this throughout the summer since the kiddos are home, but i will try to post updates on the HBOT usage.  We have noticed increased sleep.  Here are the stats from the past few days:

Sun slept from 9PM-9:10AM (both napped once we got home from trip)
Mon                9PM-9AM (both kiddos napped)
Tues                9PM-9:20AM (both napped)

The twins sleeping this late is not the norm. E actually asked to go to bed Tues night at 8:30 and walked into her room by herself.  I have been trying to wake them each morning and it's NOT EASY!  If only this weren't the last week of school.  B said "MOM" the other day and made me melt to mush.  (((sigh)))

Here's a pic of our new HBOT set up.

Great autism movie!

Everyone talks about the Temple Grandin movie, but not much has been said about claire's hubby, Hugh's. Over Easter vacation I saw his movie called Adam. It's about a man with autism living on his own and dating. it's nice to see more movies being made about autism.

Friendzone at St. James

A BIG THANK YOU to Joe, Paige and Emma for being buddies to our twins today at Friendzone!!!  We aren't sure who was more exhausted.  ;)

Happy Anniversary to Friendzone as well!  Many families would be lost without you, including us!
THANK YOU, THANK YOU, THANK YOU!

Mother's Day

I was treated to yummy Panera and the kids made cute cards at school for me that immediately went up on the fridge. My night ended with me doing laundry & putting spray n wash on the kids clothes. Emma saw me and said, "great job mom!". That made doing laundry all night worth it. ;)  


What did you guys do to celebrate???

Travel - Great places to stay in Orlando

Where are some of the best places to stay in Orlando with autistic kids???  Well, my hubby and I have always loved traveling and we haven't stopped since we had the twins.  Now we just choose places for different reasons.

1. Does it have a fenced in play ground or pool area?
2. Does it have a large pool or multiple pools?
3. Can we get at least a 2 bdrm or larger?
4. Does it have an elevator or are we on a lower floor? (People, you have to ask this b/c you may end up chasing and thus carrying one or more children football style.)  ;)

I know many of you who read this are in different parts of the country or international, but at some point may come to Disney World in Orlando.  Here are some of the best places we've stayed and they can accommodate families of various sizes - studios to 3 bdrms + pull out sofas.

The Marriott Harbour Lakes is an amazing resort.  You have 2 large pools, complete with slides and pirate ships, a miniature golf course, multiple FENCED in basketball courts (great for letting the kiddos run and play with balls/toys), FENCED in water spray grounds, a FENCED in rubber play ground, and a FENCED in children's pool with covered canopy.  We were sorry to not have noticed the children's pool until the next to last day of our trip.  It was so nice to sit in a chaise or have a conversation without worrying that someone was going to run off.  We stayed in a 2 bedroom suite with a full kitchen.  There's a Publix grocery store right down the road, so that made shopping a breeze.

The Hilton Sea World has a lot to offer too.  It has a FENCED in spray ground and children's pool, a few other pools, a movie theater and a FENCED in covered/shaded play ground.  What's great about this place is that it's right across from Sea World.  I'll have to talk about Sea World in another post.  Too many fabulous things for autistic children!  The only drawback to this resort is that it is large!  You'll want to bring a stroller/wagon if you are not near the main pool/spray grounds, etc.  We took them when ours were 2 and took our double jogger.  They show a pool side movie once a week and the kids loved this.

The Hilton International is reminiscent of Italy.  It's nickname is The Tuscany.  It has beautiful grounds, running trails, giant chess game pool side, waterfalls, spray grounds (not fenced) and a massive pool.  The entire pool area is FENCED in, but your kids can roam A LOT in this space, so we still had to chase them a bit.  My hubby and I stayed here before kids and then when the twins were 9 months old & 2 yrs old.  This resort is close to shopping....The Outlets are right down the street and Publix and restaurants are across the road.

Also, there is a wonderful FULLY FENCED in park for kids of varying needs in Lakeland, FL (not too far from Orlando).  If you are making the trip to Florida and renting a car, it's worth the drive.  You can only do Disney or Sea World so many days and then you need a break.  It's called Common Ground Park!

Let me know if you have stayed anywhere else in Orlando that has been a hit!  We've stayed at some other hotels there, but they aren't worth mentioning since it's no fun sharing a hotel room or studio with energetic, autistic children.  They take forever to fall asleep if they can see you are still up.  :)

Resources

I am taking the week off to enjoy my family, but be sure to check back for more resources. I'll be discussing our expereience in HBOT (hyperbaric therapy), safety measures for in and out of the home, play dates with "typicals", dealing with "well meaning" friends or family, multiples and autism, and much more. Please feel free to post if there is a topic you want to discuss.

Free Apps

I heard about these last yr and noticed that they're FREE again this month for autism awareness. Go to iTunes and download the ABA flashcard apps at kindergarten.com. There are 24 apps and they are all great! My little man has been using them a lot in the last 2 weeks (also in HBOT, but I'll discuss that in a forthcoming post). We've seen so much progress in the last 2 weeks that it's unreal. Each day this week he has said bird, elephant & shark and attempted turtle, giraffe, meerkat, polar bear, and many more. He seems so comfortable after using these apps on the iPad, that he is attempting things around the house too. Tonight he chased my hubby and actually said, "I get you". That is HUGE! I know some people aren't into ABA therapy but my hubby and I are willing to try anything that can possibly help our twinkies. These aren't just for ASD kids either, they are fabulous flashcards for any toddler. A bonus is the classical music that plays after every fourth card. Try them out this month because you have nothing to lose....they are FREE! ;).

I've always loved tulips anyhow

And of course...our Holland.  Everyone should be given this poem at their first eval.  The doctor can go over the diagnosis, hand you this and say, "Here is your flight itinerary.".  This poem can make people understand more than ANY book. 

Embrace YOUR Holland!

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

The Special Mother

Everyone needs some uplifting now and again.  Here is a poem I absolutely LOVE! 

Have your tissues handy & enjoy!

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."

Funny Conversations

Em: Ehhh.  Ehhh. (pointing at swing)

Me: Use your words.  Say Words.

Em: Say Words. (then walks towards me grinning with her hand in the air) High Five!

...and so we high five!


Okay, how many of you have had a million conversations like this??? 

Hope all of you have a wonderful Good Friday.

Buddy Break

If you haven't checked out a Buddy Break, RUN, don't walk to your computer and sign up NOW!  You will be so happy you did!  We didn't learn about them until the fall of 2010 and are so happy we joined.  We go to Wesley Memorial and LOVE Janis!  The people there are Saints.  You do a short orientation to describe your kiddo's wants/needs and then you are off for 3 hours.  Yes, you read that right, THREE HOURS!  ****Ahhhhhh**** can you hear the angels singing????  The first time my hubby and i went, we didn't know what to do with ourselves.  We walked around Target (b/c this is such a hot spot, ya know?) for a while and then decided to grab lunch.  Talk about a weird concept...eating a HOT lunch.  I hadn't done that in 3 yrs!  I actually burned my mouth.  My meals are usually luke warm at best, so I was actually shocked...how sad.  Our meal was pretty quiet because we were so used to taking care of the twins and they are usually the ones making noise.  It was like an awkward first date.  lol  We ended up picking the kids up early that day because we had no idea what to do to fill 3 hours by ourselves.  Now, we enjoy every last minute.  :)  Last weekend we enjoyed a leisurely lunch & even ordered an appetizer.   I know, i know, we've gone WILD!  Watch out Tampa Bay, ASD parents on break!  So you see, I'm telling you this to save your sanity.  We don't have family or babysitters, so it's just US.  We need that 3 hours every month.  Most people think 3 hours, that's nothing, but when you have to be "ON" 24/7, 3 hours feels like a vacation! So go ahead and find YOUR wild...you deserve it!


Here's a recent picture of Em when we picked her up.  She was so excited to show off her handmade Easter bonnet and crafts!

Friendzone & Sign Language

I just signed up for the sign language course at St James in Tampa. Not sure if many of you know about them, but they have a wonderful special needs program called Friendzone that the twins have been attending for the last yr. Sally Depalma and her crew are amazing, so you should check it out!

In Holland...you never know

I'm not sure what this is going to be, because in Holland, you never know.  ;)  I have 3 yr old boy/girl twins who are both on the spectrum.  They are two of the most amazing people i know.  Sure, there are days where I pray for patience because poop has been smeared somewhere or just everything that day has gone awry, but most days some miracle has happened...a sound, a word or a tea party.  Then there are those moments at night when you check on your angels and thank God for giving you these sweet babies.  Join me as I embrace Holland, times two!  We're just trying to enjoy it without trampling the tulips.