Tag Archives: florida

Laughasaurus.

4 May


Originally uploaded by The Happy Aspie

The tall one is Dorothy (I’ll get a better shot next time), the middle one is clearly Blanche. The smallest one is Sophia. Where is Rose? Back in St Olaf?

Clearly, my brain has turned to cheesecake.

Yes. I have been falling asleep to reruns of The Golden Girls lately. What gave it away?

 

Advertisements

Surfers For Autism

4 Nov

We had the best day ever on Saturday.  Seriously.  EVER.

Biggest thanks ever to Surfers for Autism, the surfers, the founders, the volunteers, Fort Myers Beach, and FMB PD & FD.

I’ll be updating this post as I sift through the 789 images I took on Saturday when we were guest of Surfers for Autism.

They say that we (people with autism) are “Rock Stars”  so if we are, then I’d have to say that knowing them and being there with them on a gorgeous Saturday on Florida’s SW Gulf Coast was like the worlds most epic fantasy jam session ever, because we think they are worthy of the title as well.  Seriously.  If you had three wishes and could wish for anyone to play together, for you… That’s the fantastic and awesome I am trying to express here.

Where to begin…

We rarely go to the beach as days off and not-too-sick days rarely line up.  Also, the beach is sensory overload wearing a disguise that suggests that she (the beach) is a serene environment, but for us it can be overload starting at the application of sunscreen and escalating from there.

We did it though.  We went on Saturday.  I have proof!

Before the first run of the day:

Fort Myers Beach FD brought over a truck and handed out paint! Everyone painted and tagged! It was great fun and quite a masterpiece!

Alex painted these words on the wheel well trim: fire, 911, emergency, truck… I found a blank spot and painted his name, some hearts, and an orange penguin.

Alex didn’t know where to start so I told him, “just find a space that doesn’t have any paint and start painting!” So he painted words (you can see 911 in this image) and then he proceeded to paint all of those little rubber feely-bobber hairs on the tire orange. Nobody else had thought of that! (by the way, those feely bobber hair things are left over from the injection molding/tire making process. The NASCAR peeps have to cut them off their tires! Ahhh Viva La Google!)

Alex’s first surfers/guides/volunteers. The dads on the short kept commenting, “Oh that kid has it rough! Three total babes in bikinis!” It was pretty funny. They weren’t just gorgeous, they were incredibly patient and kind and warm and really made Alex feel so secure in that new and alien environment. I’m very thankful (for his surf goddesses! :-) When he came back to shore he had two more with him! One of the dads said to me, “That kids got talent!”.

For his 2nd run, he had another two fantastic guides. Corey and Marlene Lilly. Corey looks uncannily like Russell Brand and I was surprised when he spoke and his accent wasn’t British. He’s a really kind and mellow guy. He finds and picks up sand dollars with his feet. He brought one over to show us. I’ve never seen a live one… Corey also stopped by Alex’s sand digging extravaganza and talked to him and his dad.  And remembered his name.  These surfers, these volunteers, are brilliant at making each person feel wonderful about the experience.  Alex had a good second outing with Corey and Marlene and he was definitely more relaxed and chomping at the bit to get back in the water! After this we had lunch. Alex’s Oma (my mom) showed up just before he went for his 2nd paddle. We were so excited that she came by to see him surf!

That is my kid STANDING UP and SURFING and nobody is holding onto him! He stood up from his paddling/kneeling position, unaided, with the board gliding toward shore! I know! I was doing fine most of the day but that was it. I let my camera drop around my neck, started flapping my hands and started to cry some very happy tears and cheering loudly. His guides from the 3rd outing are not seen here but they were two guys named Jeff and Jim (or Bill. Spoken language keeps getting more challenging for me over time. It sucks, but it’s also a positive because it makes me more sensitive and aware when delivering any information to Alex who has a similar challenge).

I made this for him today:

Yeah.  I’m still getting goosebumps when I think about him surfing into the shore, with his hands out.  He amazed me.  He amazes me each and every day and has since he was born.  It’s not that I think he can’t do something, because he can do nearly anything he puts his mind to.  That being said, he can’t be neurotypical and neither can I.  We can put on an act that works in some situations, but that’s not us.  Surfers For Autism  has an incredible calm to it, that I rarely feel when with anyone other than my kid or by myself.   The reason for the calm, in a very large group of autistic people and their families, is that everyone there can just be themselves.  We pulled up to the lot next to Crescent Beach Park and I saw 5 kids in maybe 15 feet of sidewalk flapping and walking tiptoed.  I said, “It’s going to be a good day”.

And it was a good day.  It was the best day we’ve had in a very long time.  We deserved that and I will treasure that feeling probably forever, though we will have days to match once the 2013 Surfers For Autism season kicks off.

xo

B

Oma’s Matzo Ball Soup!

9 Nov

P.S. on the Matzo thing…(my apologies for my wacky punctuation and grammar… I’m hiding right now. I don’t know why I can’t hide and use proper grammar, but that’s my story and I’m sticking to it….)

 

Here, have a picture that has maybe just a wee bit to do with the rest of this post… It’s Alex (a very little Alex as I was holding him up while this picture was being taken and I haven’t been able to do that for a long long long time) and me at Oktoberfest here in Cape Coral at the German-American Social Club.  Only in the south would you find this wooden picture thing with the cleavage this covered up!  The hat is Alex’s.  It’s his first traditional German wool hat.  We try to add a pin to it every year, but we did not go to Oktoberfest this year due to scheduling and me being so damn sick.  I did find a little charm that says “Kunzelsau” which is where my grandparents lived and where I used to visit them when they were alive.  I found it on ebay and I have it in my pile of stuff to fix and make… I’m going to modify it into a small pin for his hat.  He does need a bigger hat now, but as it’s so hot here, I think we’ll just keep decorating the one he’s had since he was 2….

 

The recipe I started out with was this one:  Oma’s Fabulous Matzo Ball Soup.  I chose this one because I had nearly all of the ingredients and the “Oma” in the title gave me the warm fuzzies.  My mom is from Germany and Alex calls her “Oma” (my dad is Popi pronounced “pop E”… My mom claims she never spelled it this way.  Every time we see them we have the “Pope I” or “Pope Eye” discussion. Every. Single. Time.  I called my dad’s dad “Popi” when I was growing up and it is spelled “Popi” in the funny little captions my mom put in all of my baby albums.)… I called her parents “Oma and Opa” and my dad’s dad (my grandmother died the year before I was born) “Popi”.  So anyway.  The word Oma gives me warm fuzzies and makes me remember some of the foods my Oma made for me during summer visits to her house on the Kocher river in Kunzelsau, Germany.  She never made Matzo ball soup.  But she did make tasty treats like Pflaum kuchen served with Kartofle Suppe (potato soup)… Please don’t mind my spelling… I’m blogging in secret right now as if kiddo discovers I’m out of the shower I’m going to be his captive video game audience before I make him some dinner.    Oooh and she would make baked apples for my grandfather and a pitcher of cool vanilla sauce to drizzle over them.  She would give me a glass of the vanilla sauce to drink (it was like a thick but not frothy vanilla shake…and not too cold.. perfection)… Summer was one of the few times I was allowed to have such sweets and treats…. Ok… I’ll post how I modified the recipe in a little bit…  I’m also baking a cake tonight as a surprise for a belated 70th birthday for my dad, 8th birthday for Alex, and 36th birthday for me.  We haven’t been together as a family, with me feeling up to baking anything, in the past few months, so I figured that I’d make a baked cake inspired by icebox cake (Dad’s favorite)…  Ok. Off and running!

 

xo

Bek

You Just Can’t Trust Giant Food With Faces….

5 Nov

My Happy Aspie

6 Oct

(That’s my Happy Aspie in his Happy Aspie t-shirt.  I have one of the shirts as well, but totally miscalculated the size I needed and now have a big gray t-shirt that could provide coverage should a hurricane strike and if post-hurricane FEMA runs out of tarps.  It’s bigger than big.  And I’m not some slip of a girl. I’ll be posting a link to these as soon as I have the link up and running.)

Anyway, Alex is HAPPY. Sorry for all of the caps, it’s not some weird acronym that means anything but happy, he is just that HAPPY!  I want to shout it again: HAPPY!!!  Ooops.  I think I just woke him up.  Shhhhhh.

I’ve delayed in telling all of you this, because I didn’t want to jinx it.

It has been almost 7 weeks that he has been happy, so I thought I could finally share as so many of you have offered shoulders, concern, kindness, and understanding over the years.

I reported, way back when, that his school was closing permanently.   It closed at the end of the Spring semester, leaving us without a school in August, and without a camp in between. We had no other options, and didn’t feel safe and secure putting him in a program for neurotypical kids with new instructers/camp counselors and I was all hopeful that I’d have more energy after my new RA meds kicked in.

So kiddo spent the summer at home, with us.  We just didn’t have any other options for him.  So it was a summer of nearly no activities, spent inside (it’s Florida. It’s brutally hot here and we are pasty folk).   I was fairly sick and in bed most of the time, trying to sleep and rest to get to my goal of doing one thing around the apartment, one thing with Alex, and one thing online everyday.  That may sound like a minimal amount of stuff but I am seriously begging for more spoons once I run out before mid afternoon hits.  The good news is that Enbrel has relieved a great deal of the pain from the RA, the bad news is all of my labs are screwed up and I’m still so fatigued that some days have me struggling to just pull enough covers back over to my side.  Kid and his dad spent most of the time either playing video games or locking horns, or a brutal combination of the two.  It was like no matter what, kid couldn’t get the benefit of the doubt or be understood and for some reason his dad’s understanding moved from accepting to denial.  I’m not going to say it is ever easy.  Kids with Asperger’s have Aspie/Autistic traits, but they are also still kids, and if they have been around typically developing/neurotypical peers, they may have picked up some habits, some attitudes that are less than desirable with the family.  Mostly though, it made me realize that while I have presented every possible source of material to his dad, given the prescribed “space to parent in his own style”, and I needed to intervene multiple times per day.  I started off exhausted and stressed and apparently my capacity for both was going to be stretched to the max.  There is a precarious balance, between being wife and being Mama and trying to get communication flowing freely and appropriately.  I have yet to find that balance, especially when I’m acting as sort of a berlitz go-between trying to translate Aspie into NT English and NT English into Aspie for two people who just could not get their messages across to each other, without hollering, crying, and stomping.   We survived.  I’m not sure we solved anything, but things have calmed since kiddo is at school, his dad is being much more mindful,  and my boy is hap-hap-happy.

What was that?  He is HAPPY.

We did something we swore we would never do while living in Florida (for many reasons).  We had him re-evaluated by the school district and we followed their recommendations.

They assigned him a school and a classroom.  He started school a couple of weeks late (long story). We went in the first day to see his classroom and meet his teacher.  They had computers, hermit crabs, a lego table, a smartboard, and a trampoline in the classroom!  He’s with 6 other kids, mostly boys, all with communication disorders.  I showed his teacher the inflatable wobble cushion we brought with us (really helpful for Alex at his old school) and started to explain and his teacher said “Oh good!  Here’s his desk.  You can put that right here.”   I didn’t even have to explain about how he needs to wiggle around in his seat to help him focus (yes, it is in his IEP, as well as other tools). The teacher knew this about my kid, about kids like him. They have a mini-trampoline in the classroom! He can jump on the trampoline to help with transitioning (which is what he does at home).  It was all amazing and felt like a whirlwind of fresh, cool, clean air swirling around us in those few minutes we spent in the classroom.

We went home.  We stopped at starbucks on the way back and it was strange. I don’t think we had been anywhere, sans kiddo, except for trips to the lab for blood draws every 4-6 weeks for me.  It was such an odd feeling.  We picked him up at the end of the day and he got in the car looking like he was about to burst into tears.  As we drove away from the school I asked him “how was your day at school?”  and he just bubbled over with glee.  He was trying not to cry when he got in the car because he was so happy and grateful that it was threatening to come bubbling out of his eyes, so he hid his feelings as well as he could and then BOOM!  It was like fireworks of joy and enthusiasm.  I felt like I could start thinking about compiling a list of of pros and cons so I can decide if it’s safe to breathe again maybe.  And then I will.  But it has been seven weeks.  Seven weeks and he has only reported a couple of issues, all related to the other kids in his class.  They all have communication disorders and are on the spectrum.  Naturally, they all drive each other a little bananas.  So we are working on strategies to deal with this, but for the most part, the daily notes from his teacher have been positive.

I know!  It’s so amazing fantastic wonderful that between this and allergies making my face feel like it’s been whacked by a frying pan, it’s surreal and almost trippy feeling. Am I hallucinating?  Was I dreaming?  I wonder this every single day, and everyday my kid runs into my room, jumps right on my bed, hugs my head so tight (he seriously wraps his arms around my head to hug me when I’m sleeping or in bed resting) and tells me he had another great day.

I’ve stopped pinching myself (the Enbrel makes me bruise and bleed very easily).

Anyway, just wanted to share.  Are you happily squeaking and hopping up and down like me?  (again, that could be the Enbrel.  It’s made from hamsters.  Really.)

Goodnight, my friends.

And Thank You.

xo

B

 

%d bloggers like this: